I'm looking for some advice, friends.
The migraines, they are getting worse. I've come to (almost) the end of the road with the doctors. And here and now, I'm going to lay it out for you, because I have very little shame when it comes to spilling things on the blog (HI!), but I do understand that some are squeamish, so look away if you need to, I won't mind. This might be too much info for some. In which case, please hop over to Hipster Puppies and have a fabulous day.
My adorable, smart primary care doctor has done what she can and has sent me away to specialists. My neurologist has ruled my migraines to be simply hormonal in nature. He's put me on Topomax, which is fine, but I don't really like being on it, but I also don't hate it. I'm on a high-enough dose, don't want to go higher, but it doesn't make me feel stupid; it just makes my fingers tingle sometimes and I have a hard time staying warm (something I'd never struggled with before).
My ob-gyn has done almost all she can, too. I have tried every single birth control out there and nothing has helped. Progesterone, both simulated and natural (even the plant-based creams) don't help and sometimes make it worse. She says, after five years of trying, that we're down to two options, neither very good. (See, I also have endometriosis, and we're dealing with that, so I've got all sorts of monthly pain, ugh.)
#1 Hysterectomy, but they won't remove ovaries at my age (37), nor would I really want them to, so even if they went that route, the headaches likely wouldn't stop, since they come from hormone production.
#2 Drug-induced menopause (like Lupron) – which would be great, except for the side-effects, and except for the fact that my doc said I could only be on it for a year, and then I'd have to go off of it. Hearing this, I burst into tears.
I'm seriously at the end of my rope. I have a hard time talking or thinking about it, actually. Lately, I've been getting four or five migraines a month, either at my cycle or at the middle of it, and they're debliitating.
What I don't need: Advice on pain management. I have Fioricet and Midrin (the triptain family of meds don't help me). These two pills sometimes help, sometimes they don't. Whatever. I get through it.
What I'm looking for (kind of desperately): advice from women who have gotten through this. My lovely ob-gyn is sending me to a Pain Management clinic within Kaiser as her next step, and I'm hoping for good things from them (but no more drugs! Hate drugs! I don't want to mask all this, I want to get rid of it).
Things I'm thinking of:
A radical change in diet? I have tried acupuncture with limited success. Exercise? Meditation? More yoga? Running (which sometimes makes it worse, or used to, when I was running more). OH GOD DON'T MAKE ME CHANGE THIS MUCH! But honestly, I can't do this much longer. This much pain a month, between the migraines, endo, and cramps, is too much. I try not to complain a lot here on the blog or twitter or FB, so I apologize if this is out of left-field, but you all know a hell of a lot about just about everything. What has helped you or someone you know?
With all my heart, I thank you in advance.
*Edited to add: I'm 37. I don't want kids. If I *DID* kick and scream and MAKE them take both ovaries in a hysterctomy (although my doctor said they wouldn't — she also said I'm in the driver's seat), what direct experience do you have with that, if any? Besos.
** More: I'm feeling distinctly hopeful after finding this book: Heal Your Headache on Amazon. I've never seen more positive reviews of a book, EVER. I sent it to my Kindle and have already read a quarter of it, and I've made another appointment online with my neurologist (this is all done in the middle of the night! God bless technology!).
*** NEVER GONNA STOP ADDING TO THIS! The end of the night, I've read most of the book, and just found this synopsis on NPR.org. I think I'm going to give his method (elimination diet, no pain pills) a try and I'll let you know how it goes, before I try anything more radical.
I would opt to go with the hysterectomy. They’ve come a long way in doing the surgery. You should come out of it fine and not subject yourself to more chemicals. Maybe leave in one ovary and take out the other? I haven’t looked back since mine.
I had a hysterectomy with my ovaries out in my early 40s and it was wonderful. No hot flashes, nothing. I am so glad I did.. hang in there…
One ovary is still enough to provide all the hormones you need until natural menopause, though. I just had one removed last week thanks to a giant cyst on Righty.
I just don’t know if you have other options. Early menopause might be an acceptable trade for all the pain you’re putting up with every single month, but …it might not.
Mostly I’m commenting because of a question: visual migraine? Is that what it’s called when there are cartoony lights right in the middle of everything you’re trying to look at? That’s happened to me a couple of times before, and I was just wondering.
Have you tried acupuncture? That’s what seems to work best for mine.
But I also have to say I had my ovaries removed a couple of months ago for other reasons and I have not had a migraine or any other headache since.
I hope you find relief soon!
Wendy Knits has gotten rid of allergies through the Clean Eating regimen, which does not sound fun. However, if it can get rid of allergies it might do for migraines. I also vote for the hysterectomy though. It sucks to think about at such a young age, but I think it could be worth it. A friend of mine just had one and has no regrets. I have similar problems to yours and think the trade off would be worth it.
Lookit your caffeine consumption. It was years before I saw my connection and made sure I got my daily minimum dose :-).
Meanwhile? for natural drug-free pain control, keep a large jell-ice pack in the freezer. Ice pack on head & heating pad on feet will help draw all that extra blood from your head to your feet.
Got that from the best chiropractor ever, and it did bring some relief.
Hysterectomy? I’d take one if I could get one, but my BABY is almost 30, so I KNOW I’m done 🙂
Good luck tweasel.
I’ve suffered from migraines since high school (I’m 31 now) and when I was younger I think they were stress related, but as I’ve gotten older they have very much become hormone related. I get them 2-3 times/month at the same points in my cycle. I’ve come to the point where the only thing that helps is a change in diet. I cut out gluten (most grains, really) and I became a different person. Much more clear headed and the migraines were greatly diminished or did not appear at all.
Now, I’m not saying I’m very strict about this diet, but when I do go off of it, I dearly pay for it with the mother of all migraines. So, for me, diet is very much connected to my migraines.
Hello dear dear Rachael. My ballet instructor is plagued with migraines, too. She absolutely swears by this simple remedy – apply ice packs to the back of your head and to the back of your neck and upper shoulder area. Try it – if it doesn’t work, it won’t hurt anything.
I feel for you. I used to get visual migraines with each pregnancy. Not painful at all, but super freakzoid freaky and frightful. I wish I had known about the ice trick.
Hoping that you get better really soon.
FWIW, I’ve never heard anyone say bad things about getting a hysterectomy. The worst thing I’ve heard is, “Shit, I wish I had done this 10 years ago.” With that, know that no surgery is without its risks, too.
Rosemary
I don’t know if it helps for hormonal migraines, but have you tried any supplements like Migravent? My neurologist recommended it for me, and I do find it helps. The magensium seems to make the biggest difference for me.
The other thing that helps more than anything else is eating as few ‘processed’ foods (99% of food goes through some sort of process, yada yada yada, you know what I mean) as possible. I can bring it down to one or two migraines a month if I’m really working it.
I don’t think a hysterectomy sounds that bad, but I’m not planning on using any of that equipment and don’t feel any great attachment to it.
I hope you find some kind of answer. Migraines suck.
For me the cause was salt and wine. As soon as we figured it out and I cut out all salt and foods with salt in them, the migraines were gone. Now I’m past menopause and salt doesn’t bother me any more. I will still get migraines from wine and occasionally from stress.
Evelyn
Personally, I’d consider the hysterectomy for the endometriosis alone, if it’s that bad.
If it were me, I’d need to be absolutely sure the problem is hormonal. Would a spell of Lupron constitute a good test? More information might help you make a decision.
By the way, I had a subtotal hysterectomy for a different problem a few years ago. It was fine, a lot easier than other things I tried for my condition. Lots easier. Rest assured, with a good surgeon, nice hospital, and a bit of luck, a hysterectomy won’t be horrible.
I developed a dairy allergy (not lactose intol, but actual allergy — throat closing sensation, feeling like I would drown in my own phlegm — there’s TMI right back at you!) last fall. I stopped dairy, started looking at alternatives. This led me to vegan recipe books from the library, which led to raw vegan foods, which taste so darn good and are so amazingly filling and nutritious and energizing that I’ve continued for the past few months and have no intention of stopping. Along the way, my skin has become softer, my joint pains are gone, my energy level is through the foot, and – best and most unexpected of all – my lifelong migraines and headaches have disappeared! (Apparently, this is not at all uncommon. The stories of all sorts of recoveries and elimination of need for pharmaceuticals are amazing.) Oh, and I’ve dropped ~30 lbs. without even trying. Seriously. This is even with delicious raw snacks and sweet raw treats and meals that even my meat-and-potatoes husband and adolescent kids think are fabulous.
If somebody had told me a few months ago that I’d become a raw foodist and be LOVING it, with a sense of abundance rather than restriction, I would have thought they were high on the wool fumes. Who knew that eating raw foods could include healthy versions of everything from spaghetti to falafel to ice cream and brownies?!
The way I see it, adding more raw foods to your life can’t hurt and just might help a whole lot. And fast.
There are plenty of raw food websites out there, but one I’ve found to be particularly supportive and informative is Raw Food Rehab, http://rawfoodrehab.ning.com/ . Believe it or not, I visit there more often than Ravelry now. 😉
Regardless of which path you choose, I’m sending best wishes for relief.
Dear Rachel,
so sorry to hear everything you’ve been through .. I’m right there with you and have been going nuts myself with all the doctors and different options and oppinions.
One thing I’ve done that has helped me a lot and has caused that I don’t have to take topomax on a regular basis anymore is to cut out everything that has aspartame in it. Cut all things diet .. aspartame is known for causing migraines and it’s in so many things that we eat and drink. It’s been ½ a year since my last migraine but if I take just a sip of a diet coke – I might as well just go to bed and wait for the migraines to take over.
Feel better soon!
Birgitte
Try to find a GOOD osteopath. I used to have migraines once a week that lasted two or three days, nowadays I get them maybe once month, if that. I’ve found that seeing both a massage therapist (who actually uses osteopathic methods) and an osteopath helped a lot. They also give good advice on exercise and food.
No advice, just an I hope you figure it all out and feel better very soon.
Go for the Hysterectomy – never looked back after mine. They did mine vaginally, and left the one ovary that was healthy. This was 8 years ago, and I am 49 now. My problem (besides the diseased insides) was behavioral shifts to rival tornados. Gone. Very few and very mild menopausal symptoms a couple of years ago, and that’s it. I also would investigate the no-aspertame thing – that has helped a few of my friends with various issues. Hugs!
I’m sorry things are so crappy, stuff like that really interferes with life. Even if it’s not a painful day, I am sure you are still thinking about it.
While I can’t give any thoughts personally, my mom had a full hysto at 34 for endo. I know she has said that she is so glad that she did it, but obviously it put her into menopause super early. I know that is the point, but it does mean she had all the usual things associated with menopause – hot flashes, mood swings, change in body shape (thicker in the middle) etc. Some of those side effects were things she had to deal with for 20 years (particularly the hot flashes). That being said, I know in her case she does not regret her decision at all (and that was also many years ago, so I am sure the procedures and post treatments have improved).
I don’t imagine that helps much, but it’s my two cents. I hope you find a solution that works well for you, and soon.
Amen to cutting out aspartame! My h/a stopped immediately–40 years ago! Also am now using Calm magnesium supplement, Kombucha tea (synergy) and Gluten-Free for joint aches and weight loss. Its all about the diet. Raw foods sounds like something I should visit! Yipee. Good luck Rachel and thanks for being so open and brave and honest as well as for writing a good read! 🙂 Barb
Look into the Fat Flush Diet, when I went on this, my blood pressure dropped, and I had NO PAIN whatsoever, all the little aches and pains we all get seemed to go away, no more headaches (course there is NO caffeine on this diet, which may have something to do with that) and I had NO PMS! NONE, why did I stop this diet? I felt so good on it…well, it is a pretty radical thing, and when you are a mom, it is hard to cook a meal for everyone else, and then something different for yourself….anyway give it a look!
Your story sounds like mine, except add 20 years and throw in the fact that I am now in the first year of perimenopause when hormonal migraines are supposed to be even worse (and they are). I actually just started the Topamax Friday and haven’t ramped up the dosage yet and am a little disconcerted to learn that you’re always cold, since I’m already always cold.
Anyways, I can add to the ice pack on the neck idea that if you also at the same time, put your feet and/or hands into very hot water (do the dishes for instance) it draws the blood away from your head and quiets the throbbing.
The migraine trigger food lists are daunting and downright depressing (Google for specifics), but what you might try eliminating first is wheat, especially anything with yeast like bread.
Also helpful is this thing my aunt gave me which looks like a whisk-type egg beater with the wires all cut and the ends dipped.(search head massager). Put it on your head and ask the people in your life to give it a tweak occasionally as they walk past you. Works better if others do it for you.
((((Rachael))))) Migraines are awful. I had bad ones for a lot of years, but now only get a really bad one every couple of months.
Everybody’s bio-chemistry is different. My sister also gets bad migraines – worse than me – but much of what works for me doesn’t for her, and vice versa. So, the things that helped me may or may not help you.
I gave up coffee a lot of years ago. I only used to have one mild cup a day, but if I didn’t have that one cup, I’d get a migraine by 3pm that would last for 5 days. I avoided all caffeine for a long time, but now I do drink tea, and it doesn’t create the same problems.
Re other food stuffs & hormones, for me I’ve figured that it’s not necessarily any one trigger, but more like a build-up of triggers/toxins, which in combination can produce a migraine. I now avoid acidic foods in anything more than tiny quantities – orange juice, bell peppers, tomatoes, wine – and I also try to steer clear of processed foods as much as possible, because the additives can be nasty. As Birgitte experienced, aspartame is a big trigger for me, so I don’t have any diet drinks or ‘diet’ foods.
There could be a range of reasons why I get fewer migraines now: I gave up the stressful day job; I’ve had a hysterectomy (still have the ovaries, but I’m off the pill); I cook mostly from scratch; I drink a lot more water; I’m on medication for slightly high blood pressure.
In addition to the occasional migraine, I do sometimes get what I call ‘painless’ migraines; they don’t hurt, but my brain races the weird way it does in my normal migraines, my head feels uncomfortable and I can’t sleep – and these happen after I go out for Chinese food (supposed to be non-MSG, but who knows), or after I eat a couple of slices of orange and almond cake – both migraine triggers for me. I’m assuming that the various blood pressure/blood thinning meds I’m on stop them being full-blown migraines.
Anyway, I’m rambling, but my suggestions would be to think about the diet and what might be triggers in combination, and also to check the blood pressure (although you’re much healthier than me, so that’s probably not an issues for you.) It may be for you that a hysterectomy would help, but it doesn’t for everyone – my poor sis gets her migraines just as badly if not worse without her ovaries as she did with them, and HRT made no difference.
Much love to you, and I hope you find answers that work for you.
Being a woman is hell sometimes! I had a hysterectomy (kept my ovaries) about 18 months ago because of WICKED endo, migraines, and periods that lasted almost 3 weeks a month.
Best thing I ever did, honestly – I feel more like myself now than I ever did, after years (like 30) of trying different birth control options, and whatever else we could find to try. I’m 48 (well, 49 in a few days), so kids weren’t the issue – I really can’t say enough good about it…
I’m thinking of you, and hoping you find some relief soon…
I’m so sorry that it has gotten to this point for you, Rachel. A good friend of mine (also named Rachel!) had a hysterectomy last year to deal with her endometriosis. She had been putting it off for ten years, and says now she wishes she had done it sooner as she feels soooo much better.
I used to work with someone who had debilitating hormonal migraines and she get amazing relief by upping her daily intake of water. By drinking 3-4 qts of water throughout the day and making sure she had some salt in her diet so as not to throw her electrolytes off, she had fewer and less intense migraines. I know that I don’t drink enough water, and most people I know don’t, so it probably wouldn’t hurt to take a good look at your consistent intake of water.
Best of luck to you!
Dear Rachael,
First let me say, I’m on ch. 28 and loving the book.
Second, I struggled with hormonal migraines from age 19- age 45. I also have endometriosis. I had an ovary removed at age 22 and some other growths removed at age 45. I’m now 50.
I found that 20 minutes of exercise a day, plus eating a more natural diet to be very helpful. Wine, chocolate, coffee, soda, along with most grains seemed to make the migrains the worst.
When I exercised and age right, I still got headaches, but they were tolerable. I could function.
I hope you find what works for you. It’s miserable.
Nora Brown
I know you said that you’d tried stuff with your OBGYN, but did you do the mini-pill? I think it’s progesterone only, so you might have … but that’s what finally worked for me. My migraines were primarily hormonal, too, and I found that the key was keeping my hormone levels as stable as possible. The mini-pill severely reduced the frequency of my cycles (to the point where they actually stopped altogether for about 8 mos) and helped clear the migraines.
Plus, once I got them under control, it seemed like I broke some nasty cycle. I no longer take the mini-pill, and while I get an occasional migraine, I can treat it with an on-demand med, not a preventative.
At any rate, I hope that you find something that works. Migraines suck. Good luck!!
Hello! I also have the dreaded migraines. I thought mine were hormonal because they would come right before my cycle, but they weren’t. I was more susceptable to them, but food was the trigger. If you have tried this and it hasn’t worked, I’m sorry to bend your ear, but this has worked for me and I have only had ONE migraine in SIX years.
I only drink pale ale, white wine, or clear liqour. No dark beers, no red beers, NO RED WINE (this one is such a trigger that I get a full blown migraine from one swallow).
No sausage, not even meatless. I could be going overboard with that, but again…One migraine in six years.
No processed meats. Period. If a deli person has to slice it, I don’t eat it.
No artificial sweeteners. Period.
Limited all-natural peanut butter.
Limited dark (65% cocoa or more) chocolate.
Limited pickled foods.
Lots of sleep, lots of water, not much dairy in the week before my period.
My sister had a full blown hysterectomy when she was 36? 37 maybe? because of her severe endometriosis. It seemed to fix that problem, but now she has many worries including bone density. We haven’t seen enough yet for me to recommend it or not. It’s only been about six years since she’s had it done.
Email me if you want to talk more about my diet. I swear it works like a charm for me, and I will answer any questions you have.
I used to have a coworker who suffered hormonally-triggered migraines and she found that Singulair (yes, the asthma medicine) helped a lot. I have no bloody clue why it would work for her migraines, but she swore up and down that it did.
Unfortunately I have no advice to offer – I wish I did! – but I do send sympathy and love.
XO
I had a hyst and both ovaries removed when I was 44 (cysts, big fibroids, endo, etc.) I did lupron for 6 months before my surgery.
I used supplemental estrogen for a few years post-hyst, although now that I’m at menopausal age I’ve gone off.
The hot flashes from the lupron were no fun. Other than that, I’ve never looked back and I feel so much better now.
Have you tried delaying your cycles with BC?
The only other thing I can recommend is to look at your diet – a lot of times there are food triggers with hormones. Nitrates (added to meats), sulfites (in red wine), wheat, MSG, artificial sweeteners, etc. I remember you talking about your food allergies (soy lecithin right?) and I have to wonder if there isn’t some relationship.
Whatever it is, I hope you figure it out and the suffering can end soon.
Also WHOA, I just saw your add-on about the NPR site and how funny that the triggers they mention are some of the same ones I mentioned.
Carefully read labels, MSG and aspartame/other sweeteners are in things you WOULD NOT EXPECT these days. It’s actually horrifying.
Also one other question (sorry to post a million comments) but do you take vitamin supplements? Specifically vitamin D? It has not been linked to headaches but pretty much every osteopath thinks that vitamin D deficiency is the root of all health problems, so it might be worth the $10 bottle of gelcaps.
Hi – short term lurker here – but migraines- ugh. Have you considered that scents (perfume, dryer sheets, cut flowers, lotions etc.) might be a cause? It took me years to figure out that trigger. Sounds like you’ve been very thorough, tho – best of luck –
Gosh, I wish that I had some advice for you. I had hormonal migraines, but they pretty much stopped when I when went off the pill. Neither of the doctors that I went to seemed recognize a connection, but I’ve gone from being debilitated at least once a month to having a migraine maybe once a year. Best of luck to you; hope you can figure something out soon….
No useful advice here, but lots of knitterly hugs. My hubby suffers from a degenerative disk in his neck and migranes, so I can see how painful they are.
More warm and fuzzy thoughts for your health.
I had a total hysterectomy at 32, almost 20 years ago, and have *never* regretted it. Only side effect I’ve seen is that I always seem to run warmer than anyone else. Upside is that I rarely need a sweater. Downside (as a knitter) is that I rarely need a sweater ;^)
I know it sounds like seriously crazy stuff (which I am usually pretty dismissive of, with the not being a jumping on the bandwagon kind of gal), but a friend of mine swears that her migraines stopped completely after getting the silver fillings removed from her teeth and having them replaced with composites. She was losing a good day or two a week to them, and is like a new person now and is migraine free since last April.
Like I said… weird, but worked for her.
You’ve got a lot of info to digest here. I am on increased calcium(1500mg/day) and magnesium (500mg/day) supplements. Severe reductions of sugar and white carbs(rice/bread/sweets) have helped a lot. Being militant about getting 8 hours of sleep has also helped. I have a hunch yeast is a trigger, and I’m not quite ready to deal with the elimination of my whole grain breads, beer and wine just yet. I may get there.
I still get ’em, and I seem to get them over 2-3 days, during which time I just suppress, alternating Fioricet with Maxalt with Aleve. My neurologist advised me to use the Maxalt in conjunction with a small amount of caffeine (like a cup of tea) and the Aleve. Icing the area does help, as can rubbing my feet with lavender and peppermint oil. (crazy sounding but give it a try) Exercise, super hot showers have also helped a little.
A homeopathic med, Kali Phos has helped a little too. It is also sold in a stick form, called “Head On”. Be careful with it, it triggered an allergic itchy reaction when I used it on the back of my head. It DID work with the headaches, though.
I know this sounds like a scattershot approach. Acupuncture has not helped me directly, though I think it has helped with related problems like insomnia.
I like the idea of an elimination diet, though I do think it’s kind of a perfect storm of factors that might be triggering it and the diet may be just one key to uncovering what’s causing them.
I’m not sure if it would work with hormonal migraines, but I’ve been successfully using effexor to prevent migraines for almost 2 years. I was getting them almost every day, and I was unwilling to try specific migraine meds, with their scary potential side effects.
Now, this comes with the caveat that I had been on effexor before for anxiety, but also that I have since gone on the pill to further alleviate anxiety, which is at least partially hormonal for me. So it might be something to try — I’ve had two migraines over the past two years, as opposed to the daily ones I was getting. It’s an off-label use, but my insurance was fine with it because there’s now a generic for it.
🙁 Migraines suck. Your experiences may be completely different than mine, but the migraines I had ever since reaching puberty completely went away when tried being raw vegan. It was not a sustainable diet for me in the long run (looked great, felt great, thought about food ALL THE TIME), but it helped me figure out that gluten is a major trigger for me. I rarely get migraines anymore. I hope you find what works for you.
Have you looked into Uterine Ablation therapy? http://www.novasure.com/
It’s for treatment of heavy menstrual bleeding. I had it done and not only did it fix the bleeding issue, but also the PMS. It’s not sure how it works to alleviate the hormonal issues since it only deals with the endometrial lining…..but I know first hand that it does!
Check it out. It’s an in/out procedure…..I was having lunch with my husband 2 hours after having it done. BEST thing I ever did
Hi Rachel. I was just reading a blog recently where the author was using that book with great results so far. Check it out:
http://www.themayfly.com/weblog/2010/03/the_headache_post_part_two.html
Hi there! I just read the npr review of this book and it is so funny he mentions all the things I had to find out the hard way! Where was this book back when I thought I was gonna die of migraines?
One suggestion is to watch your soy intake – soy has natural estrogen, which just adds to your own body’s estrogen and ramps it up.
I have PCOS, too, so I have to watch anything that adds estrogen to my system. I haven’t been able to tie my migraines into my cycle (as it is) yet, but cutting out artificial sweeteners (and trying to make sure things are sweetened with sugar, not HFCS) have helped mine a lot.
I’m trying to talk my doctor into a hysterectomy now (bleeding issues, what fun) and I’m hopeful that a lot of my other hormonal issues will go away, too.
Before I was pregnant, I used to get pms migraines too. Last May, I started seeing a nutritionist, both for the migraines and for acne. She put me on an elimination diet, not wheats, yeasts, or dairy (eggs okay) also, limited caffeine, and plenty of water.
The supplement that made the difference though, was an herb called belladonna. I took 4 little pills once a day, and after a week or so, saw a huge difference in my headaches.
So my advice is to seek out a nutrionist. Mine worked wonders on me.
I think the idea of trying the Lutron is a good one-if that seems to work, then the surgery would likely be successful. It is major surgery(I’ve had 2 c-sections and hated that) and it is not something to sneeze at. This way you have attempted something that is relatively non-invasive and could give you a baseline. Good luck-all the food advice sounds great too. I am sorry you have been going through all this-
Have you tried a chiropractor?
I was always completely skeptical & made fun of my friends who had weekly dates with their chiro. But I had my massage therapist tell me I needed some hip adjustments and against my better judgement I started going. I thought I would NEVER let them touch my neck. Two years later, I did let her adjust my neck and within about 6 weeks my migraines (which are hormonal or stress induced) went away for a YEAR.
Then I quit going & they came back…
I don’t know if the ED in your book suggests this, but no dairy and/or gluten can do amazing wonders. Keep us updated. I’m so sorry. 🙁
Good luck with your research and decisions. I also suffer migraines, bu not to the same degree you do. I understand how debilitating they are, hopefully the people around you at work and such understand that as well. My job doesn’t and think that I am just playing hooky when I call in with a migraine.
Have you had tests done to see if your thyroid is functioning properly? Alida South Africa
I’ve got endo that caused infertility and since I did want kids, that was a problem. I went to a naturopath and acupuncturist to treat my endo and my associated hormone imbalance (I too got cycle related headaches…I’m pregnant now (yay!) so no more headaches for now). I can’t say enough good things about acupunture and my naturopath. The naturopath prescribed castor oil packs (do a google search) to deal with the endo. It made a huge difference for me, and my naturopath who used to suffer from endo was actually cured by castor oil packs. She also prescribed high amounts of fish oil, vitamin D, and an antioxidant that was from grape seed extract. Acupuncture (and associated herbs) regulated my hormones and the cycles and headaches got better before getting pregnant. Acupuncture does take time, I went weekly for 4 months and saw changes, but slowly, fortunately acupuncture is also extremely relaxing for me. I also eliminated wheat, dairy, caffeine and alcohol from my diet. That was tough, but I think it is a good way to deal with the endo…and I do think the endo was the cause of my hormone wackiness. Good luck!
I work for a chiropractor in Benicia and we have a few patients who initially came to the office because of severe migraines and have stayed because they were so happy with the results. Have you tried adjustments?
I”ve been where you are. I got to the point that I didn’t have a day without a migraine, just some days were worse than others. Mine got much worse after a hysterectomy. I saw a neurologist that only saw headache patients.
He took me off a lot of the foods that are mentioned in the NPR link you posted. I didn’t believe that food was the cause but I was wrong. I also had other triggers and they are different for everyone. When there is an extreme barometric change, I get a migraine. If I’m out in the heat I can get one. I used to think it was the sun but when I lived in Colorado I’d get sun without the heat and I didn’t get one. Also, loud noises. I can’t go to concerts even when I love the music.
Medication wise, that doc put me on a low dose of tricyclic anti-depressants and a beta blocker. I also took a class in his office on biofeedback. This stuff really works but you have to do it religiously and have someone who is trained in this area. Most pain management clinics have someone like this.
Later, when the new meds came out I switched to Zomir when I got an attack and I thought I’d gone to heaven. I was told that you almost have to try each of the meds in this family to find one that works optimally.
After menopause, mine almost completely went away. I only have one or two a year now and not the raging ones I had before.
I have the same problem that you have. My OB put me on YAZ that I take for three months and then take the little sugar pills for one week. Just 4 periods a year. That has helped. Have you tried UDO’s oil? The blend has lots of good fats in it and has really helped me. You can buy it at any natural food store. Just remember to keep it in the ‘fridge.
Take care.
I live in central coastal California and go to the Keeler Center for the Study of Headache in Ojai. It has helped me so much. Dr Cowan, the founder, has written a book, The Keeler Method, which discusses his methods. Many are lifestyle, to regulate hormones. Like going to bed and getting up at the same time every day, eating at the same time every day for every meal and snack, and exercising at the same time every day. Wearing sunglasses when under flourescent lights. He uses meds, too. He also helps you figure out what foods and other things are triggers for YOU. He’s a neurologist that has migraines. A great book!
Hello,
I went the elimination diet route, too – this one:
http://www.wholelifenutrition.net/id16.html
with great results. No migraines in a long long time, now. I feel for you – hope you find relief!
Hugs,
Lori
Dear Rachael:
I had migraines and other headaches
but not a severe as yours. I no longer consume alcoholic beverages,
candy, cheeses, MSG, caffeine and red meat. Also, stay away from any foods that are “aged” like balsamic
vinegar. I stopped soy sauce too.
Now, I go for weekly acupuncture for my fibromyalgia and arthritis–this keeps me going.
I had a hysterectomy in my early
40’s and felt fine afterwards.
Also, this sounds simple but drink lots of water and get some
exercise every day. May you be
blessed with renewed good health and realize your dreams.
Greetings from Israel, your fan,
SJS
Rachael, I’ve suffered with migraines since I was 16. (I’m 55 now.) I still get them when the barometric pressure drops – can’t do a thing about that. (And it’s the same effect when I fly.) Sitting under florescent lighting for hours also triggers for me.
I used to have a migraine almost all the time – literally. I didn’t learn until about 20 years ago that I was feeding those migraines myself. Obvious culprits: MSG, aspertame (I used to live on diet coke so it was quite dramatic when I gave it up.) But a friend of mine (who was married to a physician at the time) gave me a list of foods that are known triggers. I found that any and all of them can trigger migraines but, depending on how I’m feeling, I can usually have small amounts. These are, (nutshell version)
citrus;
anything aged or fermented (this includes freshly baked yeast breads, yogurt, sourdough, alcoholic beverages of all sorts, aged cheeses, anything vinegary, etc.)
bananas
onions
soy (tofu, edamame…..)
too much chocolate
legumes (beans, peanuts, peanut butter, etc.)
MSG, yes, but there are other compounds that are added to foods that are “hidden MSGs” – with different names. You can find those on the internet.
Smoked foods, too. That is real smoking, or even the liquid “smoke” flavoring.
any “hydrolyzed _______ protein” – I read labels voraciously.
Email me if you’d like more info. I found that by observing these restrictions, I’ve been SO much better off. Still can’t do a thing about the weather, but if I get enough rest, try to keep stress minimal (ha) etc, it’s just much better. The list sounds hopeless – the first time I read it I nearly cried; everything I liked is on it. But when I realized it was often these things making me so sick, it became easier. And as I said, depending on how I feel, I can have some. I just don’t have orange juice and peanut butter toast with banana all in the same meal – or even in the same day.
I had severe endometriosis and a total hysterectomy at 34, ovaries included. It didn’t actually help the migraines. (and there are other effects of that surgery they don’t talk about; don’t do it if you don’t have to.) I also was on hormones for 10 years – didn’t help. I’ve had some relief through chiropractic, but not complete. Watching the foods and dropping aspertame – dramatic improvement!
When I need it, the med I use is Zomig. Makes me feel like I weigh 600 lbs and can’t move (I really can) for about 2 hours, but it helps the pain go away. I just don’t take it unless I can lie down for that long.)
To your health!
Dear Rachael,
We are the same age, and I had a near constant migraine for years, starting when I was about 15. I tried Imitrex and it sent my bp haywire so I did NOT trust the drug route. The only thing that would make them go away was sleeping in a dark dark room – I tried herbs, chiropractic, and finally what helped me was a naprapath (do they even exist anymore?). He did electrody (totally not scary) stuff to my spine along with some deep tissue massage and it was AMAZING and I only had to go a few times before I was “cured.” After that, I found a woman that did hardcore shiatsu massage, and would go to her when I felt a headache coming on and although I felt beat to a pulp when she was done, no migraine. I have only had a few migraines the last few years, and they were when I ignored the symptoms and didn’t try to sleep/massage/something before the full-blown hit.
my best,
Katerina
I’ve had experience with migraines (a few times a week at their worst) and endometriosis, and what helped the most was acupuncture. My HMO at the time covered it, and I went to one acupuncturist who kinda sorta helped (but not enough). Then I switched to an acupuncturist who wasn’t covered by my HMO because she had gotten such great recommendations. This woman did ridiculously amazing things for me! I am off my migraine medication, off my birth control, and I’ve only had one migraine in the past 12 months. I still get cramps but they are manageable, whereas before I wanted to kill myself once a month (I am only mostly kidding). If you can find an acupuncturist who is really highly regarded, I would advise you to give acupuncture another try. I’m a scientist so I understand when people express skepticism about acupuncture, but I personally don’t care how it works as long as it works.
The other thing that’s helped me has been Vipassana meditation (in the Goenka tradition). It’s not a quick fix, though.
Lori at this blog:
http://the10centdiet.blogspot.com/
releived her migraines by adopting a gluten/caffeine free diet. You may want to check her blog/email . Not everything works for everybody but I would definitely try the Elimination Diet before considering surgery.
Good luck with the Heal Your Headache book. I read it and applied it about 4 years ago. I literally went from 3-4 Migraines a week to just a couple of them a month. It completely changed the quality of my life- I could finally live!!!!! And I even flushed my pain meds (WOW was that hard at the time…) and have never looked back! I wish you the very best!!!
Lupron gives me migraines – some of the worst I’ve ever had. I’m not sure how it could help the situation?
@Krista — For bone density, have your sister look into taking D3 (in oil form) and the MK-7 form of vitamin K2 (or eat natto). I’ve remineralized my bones!
Rachel, all the advice above is sterling. I’ve had migraines since I was 7 years old (you weren’t born yet) and DD has migraines that even terrify the paramedics.
I don’t have anything to add about hysterectomies, etc., other than the fact that hot flashes really aren’t so bad if you’re already good at coping with migraines, and I’ve had many friends feel infinitely better after having a hyst for endo.
My areas of expertise are diet, supplements, blood test results, and acupressure/chiro. Do you have copies of your blood test results? Have you had your thyroid checked? Do your sisters get migraines?
Rachel,
I had a hysterectomy, at age 39, due to endometriosis (with ovaries removed due to cysts). I also had migraines, but no where near the intensity of yours. I did lots of reading prior to agreeing to this and feel I made the best decision. Living with pain sucks and the hysterectomy took that away. I still get headaches, but they are very mild and manageable. My advice is to do just what you are doing, reading, research and once you make your decision, embrace it!
Wow. I get the feeling I’m very lucky not to have any female related pain. I have no advice to offer but lots of sympathy and positive energy! Farmer Joe’s has a good gluten free selection if you go that way. The big one and the little one have different products so you would need to check both of them. Best of luck!
Migraines suck. Here’s my experience (obviously, everyone’s mileage varies). I spent about 2 years proactively trying a lot of stuff because I was done. Mine are mostly hormonal and stress-related.
The Pill: I initially switched to a 3 month pill (Seasonique) in hopes of evening out the hormones. It definitely helped but was not a total solution. After 1.5 years of that, I went off the pill by accident (vacation, forgot pills) and lo and behold! the frequency, intensity and duration of my headaches is *significantly* reduced to where I can anticipate and manage what little I now get.
Stress: My pattern is usually a “let down” headache. They are almost always at the end of the day and most usually at the end of the week, when you finally relax from dealing with all the stress. Travelling is a frequent trigger. While I haven’t eliminated stress triggers, I did make a significant change at work, which has reduced stress. I also are more attuned to watching caffeine, alcohol, overbooking myself and other triggers when I’m likely to encounter a stress trigger. I also have an awesome massage therapist who deals with headache relief, and I see her every 3 weeks.
Musculoskeletal issues: My headaches are 90% on the left side and shoot up my neck to their landing place, so my doctor sent me to a PT. Sitting at a computer all day wreaks havoc on your back, neck and shoulders. The PT worked with me on posture, ergonomics and strengthening to try to prevent the constant tension in the area where my headaches start. I also tried accupuncture to address this aspect. It was actually too effective and ultimately caused headaches for me. I have an everpresent giant knot in my left shoulder where the headaches come from. Accupuncture gets rid of the knot, which feels great for a few hours. When the knot returns, I get a headache.
Diet and exercise: For me, exercise is good (especially things like the arm cycle, which gets blood flowing through the shoulder area, and other aerobic activity). WRT caffeine and alcohol, I do not avoid but I try not to deviate from my regular pattern. Coffee in the morning. alchohol at night = good. Coffee in the afternoon, alchohol during the day = bad.
During a headache, icepacks on my head and neck are really helpful. I didn’t believe until I tried it.
Sorry for the long post. I hope something helps you. Good luck!
The elimination diet sounds like a very good plan.
If you would also like to give acupuncture another go, I have a friend who is studying acupuncture who is VERY GOOD. Like, I am constantly amazed at how knowledgeable he is. He has spent time apprenticing in China, is finishing up his schooling here very soon now. He is local to you, and I’d be happy to give you a referral if you email me.
I am so sorry you are going through this. It’s hell.
I had to stop eating all of my trigger foods: No cheese (not even cream cheese),No bananas, No chocolate, No alcohol, No MSG, Limited citrus. That and Topamax have kept me migraine free or almost.
Also trying to keep a regular sleep schedule, and an exercise schedule (failing hopelessly there). I am in a difficult situation because the medications that stop the pain could trigger respiratory effects that could be fatal (lovely isn’t it!), so prevention is my best bet.
What I did was take everything away and try to add it little by little. When half a milk chocolate chip gave me a halo for a day, I knew that it was out of my diet for good!!
Oh, and I stopped taking any hormonal treatments too. That really helped.
I hope this helps you.
I was wondering about diet, food triggers. But I see you already got that advice! I think you figured out something good to try before surgery/more meds. (I’ve got stupid eczema and should be doing something similar. Just can’t face it though)
You know this wonderful Western Medicine of ours has so few options. Surgery or pills.
Hugs! and luck and will to you
I am sorry to hear that you suffer so much from your migraines. Although hormonal, I find that my migraines can be kept under control if I avoid coffee and dark chocolate. I had a hysterectomy as well (kept ovaries),I found it took me some time to come to terms with the loss of this organ. Even though I was perfectly happy with the family I had. Mind you, 7 years later, I do not regret it one bit: no more painful cramps, no more periods! I write this to you, because no one talked to me in advance about emotional repercussions of this decision. I hope your diet works though 🙂
Hi Rachael,
My love and sympathies are with you. Reading this was like reading my own diary. After years of jumping through the many MANY hoops they dangle in front of you with the hope of relief, my doctor advised me to try betablockers. This was 8 years ago – at this time they weren’t sure why they worked for some people. Anyway I was getting 2 migraines a month each lasting 3 days and both severe, one at the start of my cycle and one mid cycle. Mine too are purely hormonal and have no other triggers. I have been taking half inderal (I’m in the UK so don’t know if the drug names are the same for you) for 8 years now and I only get maybe 3 or 4 A YEAR. I’m not sure why it works and tbh I don’t care. I offer this only as a suggestion and as a hope that there may be an alternative out there that gives you some relief. Please contact me if I can tell you any more. Take care
Seona
Having a hysterectomy at 32 was the best thing I ever did. I kept my ovaries for a few years until I developed cysts on them, then they came out. All that pain from your endometriosis and cramps will disappear and that is a very good thing. It may help with the migraines; however, if it doesn’t, at least you will have gotten rid of a great deal of pain (and mess!). Do seriously consider having one… you will feel soooo much better! Take care.
Please google botox injections for migraines. All the best to you! That would be horrible to have such ongoing pain.
Hi, sorry I haven’t read all the previous posts so I am hopefully not repeating too much. Most of my migraines were caused by a food trigger. I cannot combine chocolate and coffee (on the same day), ever even a little bit. Once I discovered this life got a lot better. My husband also suffers from migraines and we think his food trigger might be sulfates or associated chemical (no beer, including pale ale or cocktail wieners or processed meat/cheese for him!)Have you talked your doctor about a hormone pill( usually birth control) that suppresses your cycle completely (sorry don’t know that much endometriosis, not sure if that is counter-indicated)The pill I am on now works really well and keeps the hormonal migraines away(they were never as bad as the food triggered ones)
Please take a look at Feingold.org before you undergo surgery. I strongly believe in this eating program, which eliminates food dyes, preservatives and artificial flavors from your diet. Yes, this is a huge undertaking in this fast food crazy society we live in, but so worth it. You will be amazed at how you feel within 6 weeks and how great real food tastes.
All of my children, three of which are college age now, have benefitted from this way of eating. My youngest son was a migraine sufferer and was tested at age 2 1/2 for seizures (which he did not have). Even at age 20 he will experience a migraine if he consumes too many food products containing dyes, perservatives and artificial flavors. My second son suffered with asthma for 8 years, after 5 weeks on Feingold he has not had an asthma attack unless he consumes foods with the above products.
It does not cost you anything and you will benefit from the program in only positive ways.
I don’t kow anything about migraines but I do know the pain of endometriosis and I recommend hysterectomey for that alone. I had severe endometriosis with endometrial tissues surrounding both ovaries. I had uterus and ovaries removed in 1978 at age 27. I was on very low dose estrogen replacement for a time. My bone density is better than either of my two sisters.
I don’t have much experience with migraines (started getting them a few years ago, but mine are just visual things and no pain so I have no basis whatsoever for discussing migraines). But I did do a spell on Lupron for endo many years ago. I did that before opting for surgery because surgery is a major step and I wanted to cover all my bases first.
First of all, the Lupron was a delight, but the real surprise was that after being on it, it was good even after I went off. In fact, it’s been more than ten years since I went off it and I’m only starting to see the endo coming back a little like it was when I was a teenager; I figure I have five to ten more years before it’s as bad as it was when I went on Lupron.
The other thing is that it’s basically reversible, unlike surgery. You can do the Lupron, and if it works you may not have to have surgery at all. If it stops working, you can have the surgery. If it doesn’t work, you know that surgery isn’t likely to help. If you start with surgery, you won’t know until after you have removed a major organ in your body whether it will even help or not. And if you can get the results with the less invasive procedure, do that.
I totally understand why people are recommending surgery — I am likely to have it in the next ten years when the end gets bad enough again. But surgery comes with real risks, including death. That’s not a small consideration.
I know your pain and have no suggestions for you. My migraines were totally hormonal–they started when I was about 38 and I charted my cycle and headaches for at least 10 years or more. They finally started lessening when I started going through menopause in my early 50’s and stopped all-together after several more years. I know–not encouraging. I really hope you find something that helps instead of having to struggle through like so many others have.
as an endometriosis survivor, I ended up having a total hysterectomy at age 35/36. It took finding a doc that would work with me, visits to another doc, a couple of courses of Lupron, continual birth control pills, and basically telling him that at my age I knew I didn’t want kids. I consider having the hysterectomy one of the best things I ever did for myself. Hang in there and feel free to email me privately if you want to talk.
I had a friend that got migraines from eating CORN. With high fructose corn syrup, corn is EVERYWHERE in the standard American diet.
I sympathize. My mom had, and my sister has, migraines. I’m lucky in that I just have lots of headaches, some of them bad, but most of them not so much.
I’ve seen diet change accomplish a LOT of good things. I’d try that first.
Best of luck — migraines are AWFUL.
Lots of good advice, but no one mentioned Feverfew. It’s an herb, I used to take it daily as a migraine preventative, it really reduced the severity of my migraines. Another way to take it is to use the fresh leaves in a “sandwich” when you feel a migraine coming on.
If they really are hormonal and you have endo, i would definitely consider the Hyst.
Good luck and hugs for you.
Rachael, So sorry to hear that your migraines are worse. I’ve had migraines all my life but they exploded when I went through chemo. 2 neurologists told me it couldn’t possibly be the chemo ( yeah,right) then I found a neurologist who gets migraines…best possible type. Anyway, I have to agree with the NPR article although I got to that point backwards….instead of avoiding foods, I just started only eating food I had made from scratch and noticed a big change. Every time I eat out, I will invariably get a headache. If I cook my own food and stay away from anything I think of as having “chemicals” in it, I do MUCH better. Also, I take 3 tabs of Magnesium citrate daily. There is some evidence that will keep migraines away. I also tried Vit B2 but saw no results.Yoga does help. If I think of anything else, I will write in again. Best to you, Mary in cincinnati
I feel your pain, Rachel, I’ve been there, the whole thing. Hormonal migraines, cramps, periods that lasted sometimes 45 days, all of it! I had a vaginal hysterectomy (they left one ovary) at 40, and haven’t looked back since! I will be 49 at the end of this month, and the only side effect was that I lost a bit of my girlish figure and am now more athletic shaped rather than curvy. It was a small price, I think, to get my life back! I still get the occasional migraine, (about 2 or 3 yearly)which is nothing compared to 3 or 4 a month. And my doctor wishes his 30 year old patients had my bone density! I would not recommend this to everyone, however, my migraines were ruling my life, and my endometriosis had gotten so bad, it was growing into the uterine muscle wall, which is, to put it mildly, unbearable. Talk with your doctor, ALOT! Don’t discount this as an option if it can give you your life back! Good luck whatever you decide!
Hey, longtime reader de-lurking to provide some input. I absolutely think you’re on the right track with a diet-first approach. It’s reversible, and no-risk!
I don’t have migraines, but all sorts of other un-fun, debilitating, mysterious, and seemingly un-diet-related health issues. I’ve had some amazing results with diet, as well as supplementation for liver health. Your liver, apparently, processes the excess estrogens when that time of the month comes around.
My partner has migraines, and we’ve also had major improvements both in frequency and severity with the diet changes. Extreme, but worth it. I have done the specific carbohydrate diet, minus milk and nightshades. I’ve dealt with all the ins and outs of food allergies and trying to figure out what the problems were; if there’s anything I can do to ease the process, feel free to email me. I’d be happy to share the rather hard-won lessons of my illness with a fellow knitter-in-distress.
-AJ
I get migraines from dairy. I cut out all dairy products and no more migraines! There’s lots of alternatives now – soy, rice, etc. Also, alcohol gives me horrible headaches. Good luck!!
Ihad endo and a complete hysto incl ovaries at age 28. It did nothing for the migraines. One migraine 20 years past surgery was 17 days long. I wanted to die. I use ice. No drugs. I tried every drug and had side effects. As the single mother of two I couldn’t afford to be out cold because of drugs. I have found that an ice pack and a weekly massage have done more for the migraines than anything else. You have all my sympathy and many hugs.
I second chiropractic care. I have been seeing my chiropractor for 3 years and in the past year I’ve only had 2 migraines. 2, and I was still functional while having them. I used to have at least 4 per month that had me living in a cold dark room for days, pulling my hair (counterpressure sometimes helped) and twisting myself into knots to try and find the one position that would relive a little bit of the pain until it was so bad I threw up and had to hock something to go to the ER to get a shot because I didn’t have health insurance because I could barely function much less work. I tried to limit the shots to twice a year, it’s about all I could afford and to try to avoid being marked as a potential drug seeker. The only times I had fewer migraines were when I was pregnant, but when I did get them they lasted a lot longer.
I do not have endo but my sister in law does and she has been successfully treated by our chiropractor. She now lives in a different state and drives down to see him a few times per year to continue treatment. My female issues were a highly irregular and unpredictable cycle that was heavy and extremely painful, this was the way it had been since puberty. I would generally get my period about 3 times a year so I wasn’t really able to tie my cycle to my migraines, but since I’ve been in regular chiropractic care my migraines are effectively gone and I have normal periods every month like clockwork.
Sorry if this is a little disjointed, I’ve been laying pavers all day and going back and forth between typing and mixing biscuits 🙂
Not a big fan of the hyst. Try the elimination diet..be honest with it…if that doesn’t work..try the lupron..sometimes a year of lupron shut down of the ovaries is enough to make everything quiet down for good..and if it’s not..well, gosh, you haven’t had to have surgery. And yes, laparascopic hysterectomy is available and it’s not the big bad radical surgery that takes 2 months to recover from like before..but it’s still surgery and you still would have your ovaries unless you convinced your surgeon to remove them….and frankly, i believe that a little estrogen is good for you…so my sage medical advice is elimination diet first, lupron second, hyst, last resort. mwaaaa. good luck kiddo.
So much good advice! I’ll keep mine short: Partner had Hysterectomy – best damn thing she ever did for long-term health issues, your milage may vary.
I did a rigid elimination diet, made two grains and a couple stupid additives off-limits, and have had near-miraculous results.
Best of luck!
So sorry to hear that it’s so bad, Rachael… And endometriosis too, awful. Good luck with the diet!
One additional thing: have you had your eyes checked recently? I think you have, I think you mentioned glasses a while back. I recently found out I’m sort of cross-eyed, which may be giving me some of my headaches. Some simple, weird exercises should help (if I did them, sigh). It’s not a thing all eye exams check for, I think, but it may be another non-invasive thing to investigate.
Can I suggest that you consider going to see a Chinese physician?
They will customize chinese herbal medicine that will help to regulate your body so it’s not about pain suppression but improving your overall health being.
I find that a better alternative than to be on painkillers or hormonal drugs especially for ladies health issues.
oh honey, I feel for you.
I’ve also suffered from migranes since my 20’s and most of them were triggered by hormones or allergies as well. Changing the diet certainly helps but have you taken a loong hard look at your sleeping patterns? I know you work nights and that could be wrecking havoc on your system. The reason why I say this is because I have had two sleep studies in the last year and have really learned alot about my sleeping habits ( poor at best!) and have been working with a neurologist to help stop my migranres and she suggested the sleep study. She also recommended Topomax (which I have not tried yet) but fixing my sleep issues, getting on a regular sleep schedule, stopping the birth control pill, have helped me TREMENDOUSLY. Seriously. For reals. I don’t know if you have neck pain associated with your migranes, but ice on the neck does help and I’ve heard that botox injections done by a neurologist, directly into the neck muscles helps as well. I was going to try that route if the sleep study didn’t work, which thankfully, it did! Best of luck and I hope you find relief soon – I know it sucks!
oh also, if you DO have neck pain with migrane be very careful about going to a chairo…I was almost disabled from a bad chiropractor..you have to be VERY careful….can do more harm than good unfortunately – same with massage therapy, they can also screw with your neck which can induce migranes. Also-try getting a neck pillow from brookstone, it also helped with neck pain which in turn reduced migranes
I’ve skimmed the comments but not read them all – sorry if this is a dup. I did notice that some people mentioned aspartame- It was a trigger for me (as well as pretty much every other artificial sweetener). The kicker was that it takes about a month of eating it for me to start having migraines,and about a month of not eating it for me to stop. As you’re working with an elimination diet, I’d advise you make sure you give each food a good long time before the next one before you decide it isn’t a trigger.
Rachael – I have a disease (cervical dystonia) where the treatment is botox injections, in my neck, every 2 1/2 months. My neurologist, who performs the injections, also treats migraine patients with botox injections. Have you considered this treatment option?
Hi Rachael, just finished “How to Knit a Love Song” and I thought it was great. (I actually overshared with the poor Borders clerk something that went like this: “We both went to Mills! I am so proud!!! Eeeee!”)
Anyway, I feel like I can contribute something to your headache issue, even though I’m a little late. I too am on Topamax and love the Midrin for my migraines (triptans don’t work for me either). What worked the best for me, in combination with medication, was total dietary modification. I cut out alcohol, processed foods, chocolate, cheese, sugar, caffeine, soda, bacon, you name it … it sucks, but between that and the Topamax, it was the difference between 5-6 migraines a month and zero.
Hopefully this will help. I had to take the traditional “migraine elimination” diet a step further. Also, I second the avoid corn recommendation – my coworker gets horrible migraines from corn, even though I don’t, so it really is trial and error. I was lucky that mine weren’t hormonal, because that adds a whole other layer for you. Good luck.
PS. be glad that you don’t get stupid from the Topamax. I spent 10 minutes yesterday trying to remember the word for “bleacher.” “You know, where you sit at a baseball game … out in the outfield …” Ugh!
Ouch. I’ve had migraines all my life still do. After breast cancer when I was Tamoxifen I had a constant migraine for 5 year — no joking — caused by the drug. Off it now and back to 3-4 a month– I don’t suggest this as a way of looking at them as wow hardly ever now. I tried diet changes and acupuncture. The acupuncture has taken the edge off a lot of the pain but still get them.
Sending lots of hugs and good wishes that whatever you try works.
Try CranioSacral Therapy, it’s light touch bodywork. http://www.upledger.com/ to find a practitioner in your area, look for someone with lots of training. A good CranioSacral therapist is worth their weight in gold. They have great luck with migraines but worst case scenario it will be a bit of lovely relaxing self care. Good Luck!
I’ve had menstrual migraines since I started menstruating and I’m nearly 45. I’m lucky, Relpax is a miracle and the only triptan that does work. I also have Midrin on standby when it’s taken too long to get to a Relpax.
My neurologist, also a migraine sufferer, recommended Heal Your Headache, which was great. Another one of my neuro’s patients has a recipe blog here: http://www.migrainefreecooking.blogspot.com/ since there’s nothing worse than getting a list of don’t eat foods without having ways to fix the foods you CAN eat.
I also take Cymbalta and a magnesium supplement, but that’s based on my own blood work.
Oh, sweetie. I’m late to this but re: the endometriosis, I am waaay surprised your gyn didn’t make you aware of uterine artery embolization. I suffered for 15 years (did 2 separate rounds of Lupron) and FINALLY this old technique was used in a new way and was magic. No more anemia so severe as to require blood transfusions, not more eating naproxen like candy for two weeks each month, no more… well, you get the drift. If you want to know more email me and we can set up a time to talk (easier that way?) Much less invasive and easier on all systems. I send you hugs.
There’s a wonderful book that I’ve found great helpful info in called “Listening To Your Hormones” by Gillian Ford. Some women who weren’t helped by taking progesterone (either natural or synthetic) are helped by taking estrogen instead. She gives all kinds of great information and breaks it all down in a very easy to read way. I highly recommend the book!
You might think about TMJ – my migraines have been a lot better since i have been trying to keep my teeth grinding to a minimum. Good luck!
Hi Rachael–it’s kind of weird this is my first comment but I’ve been reading for a while. Anyhoo–
have you tried going gluten-free? it’s tough at first but there are so many great replacements out there that we *hardly* notice any more. (OK, pizza is still tough.)
I haven’t gone through any of the stuff you are describing, which sounds HORRIBLE, I’m so sorry. But we have been gluten free for two years because our daughter has celiac-sprout.
One more voice about to be heard from, so settle in…
I could begin with the “been there, done that” speech, long winded but packet with experience. Not what you’re looking for though, I suppose.
So here goes I into the “reader’s digest” version of my answer:
Food diary is a must, then when you look back after a killer migraine (and look back over a 48 hour’s worth of entries -NOT just 12 to 24 hours worth) you can start to see a pattern develop. ‘Cause what triggers for me may be fine for you and vice a versa.
Check into asthma meds, albuterol inhailer that I started using for an “unrelated” condition cut my migraines in half!
Have a COMPLETE blood panel work up, including thyroid, and para-thyroid, calcium & phosphorous levels, and FSH levels. The results may provide some insight to other underlying conditions.
And to add to your book shelf:
http://www.amazon.com/Womens-Bodies-Wisdom-Creating-Emotional/dp/0553384104/ref=ntt_at_ep_dpt_2
And, even though you are clearly too young to be ready to worry about it:
http://www.amazon.com/Wisdom-Menopause-Creating-Physical-Emotional/dp/0553384090/ref=pd_sim_b_2
And just because it changed my outlook on my relationship with my body (and my life):
http://www.amazon.com/Conscious-Conception-Elemental-Labyrinth-Sexuality/dp/0938190830/ref=sr_1_1?ie=UTF8&s=books&qid=1271533838&sr=1-1
Also, there is new research that holds that the uterus produces it’s own hormones and that simply removing the uterus and leaving the ovaries in place can have significant impact on the quality of life. It is not really necessary to remove the ovaries to see improvement in the “hormonal hurricanes” -having suffered from “Homicidal Hormonal Hideousness” (and why do they call it PMDD??- I know this to be true. The ovaries do more than produce eggs (which I am sure you already know) and later (~read MUCH later~) in life you will be glad to have at least (if not both) of them.
Happy reading, hope some of this helps.
Can’t wait to see you for the book signing at Yarns @ the Adobe soon. I’m going to see if Carrie can bring me back a copy of the Aussie version of it so I can have 1 of each. I want to start a knitter’s book club and begin it with your book -and let’s face it, we could use a little steam around here!
Until we meet for real,
Bonni
Heather O cut out gluten & that cured her migraines.
(I know you’re not looking for pain advice, but I did just hear on NPR that for some people a high dose of aspirin can have the same effect as prescriptions.)
Well FWIW, I think I’ve had a sympathy headache since you posted this! Sux.
Forgive me for coming late to the party. I had a hysterectomy at 41. Best.Thing.I.Ever.Did. Hands down. I also had endemetriosis, but no migraines. I also had them take everything, ovaries and all, out. Again, best thing ever. I do not take hormones, have very easy hot flashes, and overall, I was sort of the poster girl for hysterectomies. I am fully aware my experience is not the same as many, many others, but for me, it was the best thing I did.
SO I suppose, in your shoes, I would give up all the good stuff and see if that worked, and if it doesn’t, take all those girly parts out. (not having periods anymore is worth it all on it’s own!)I am now 50, and have not grown a beard or any of the other scary parts. Also again, I do understand that my great experience is not necessarily the norm.
Hi Rachael,
My cousin used to have the worst migraines, they had put her on all sorts of stuff that didn’t work. She ended up finding & using a herbal supplement called Butterbur. She said it has to build up in your system and once it does (and the migraines stop) you wean yourself off of it. No more migraines for her. You might look into that! 🙂 I need to get some for myself as well, my migraines are escalating to puking migraines every time. :-/
Blessings!
Hi!
Have you tried supplementing with Magnesium? “The Miracle of Magnesium” would have the specific dose, but since I’ve tried this I rarely get migraines anymore (down from 1-4per week!)
Good Luck!
Every friend I know who has had a hysterectomy were So Glad they did it, except one. This is the only one of these friends that suffered from migraines (for years). She still has migraines and additional hormone related issues. She had a complete hysterectomy last year at age 36.
My sister and I both suffered from migraines, and mine were getting worse (in my mid to late 40s). A few years ago a parent who brought her children to the nursery school my sister taught at and is a neurologist, suggested B vitamins and magnesium. She specifically mentioned one B vitamin, but I looked into that and found that you should not take one B vitamin without the rest, since you can cause an imbalance. Also, be careful with magnesium, it can have a laxative effect. I can say, however, that I have been taking a 100 mg B complex tablet and one capusule of 400 mg magnesium oxide a day and I hardly ever get a headache! Maybe one or two migraines a year at this point, and I even get fewer headaches in general. Good luck to you, I hope something helps you soon.
My hormone troubles caused both physical (multiple ER visits for hemorrhaging, transfusions, etc)and emotional synptoms. I had a hysterectomy in 2004 but kept the ovaries, trying to eke out that last estrogen. Best decision I ever made. Until…one of the ovaries ruptured last August. I should’ve just had them removed with the misbehaving uterus. The first 2 weeks were hell (I opted out of replacement hormones), but then I was fine. Now life moves along on a much smoother road. Oh, and no headaches or abdominal pain, ever. ‘Nuff said.
I got nothing to help except a hug.
My mother had horrible hormone based migraines. They went away after menopause. She had a hysterectomy but kept her ovaries. So it seemed it was the menopause that helped (ie no more pesky hormones).
I hope you find something that helps. Migraines suck.
Check out the forums at Hystersisters.com. I came across this site when I had my hysterectomy. It appears that hormonal related migraine sufferers continued to have migraines. It’s still possible to get these migraines even if you had your ovaries removed.
I suffered from endometriosis since my teens. I wish I had a hysterectomy earlier. It would have saved me a lot of pain over the years!
I don’t have experience with migraines, but I saw an episode of Oprah that had Dr. Phil’s wife on talking about menopause. Her ob/gyn customizes hormone creams to your body based on test results. It brings the hormones in your body in balance. You might want to give it a try. Her name is Dr. Prudence Hall in Santa Monica. She sent another woman there who had been having terrible menopausal symptoms for years. After going to Dr. Hall she finally felt normal again. I would try this before having surgery. Good luck! I hope you get some relief.
Hey, I haven’t read the comments others have made but having the Hystero was the best thing I’ve ever done for myself. I did have the ovaries too – might as well get it all over with at the same time but I am over 50. Honestly, tho, I’ve never felt better in my life.
I work for a pain management office in San Carlos and the doctor uses Botox for migraines. It works really well. He also does trigger point injections as well. Maybe consider coming to see him. Not too bad of a drive for you from Oakland.
any relief from book? do you drink much diet soda?