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Halp! (And Possible TMI, Forgive Me)April 13, 2010

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.

Comments

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?

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