HELP! Where do I go from here? (migraines and PCOS)

Allsmiles · 09-07-2005, 06:30 PM

I have migraines… They are persistent, and when I am not having a migraine (5-6 times a week), I have a headache. I haven’t known a headache free day in about 3-4 months, and I am really at my wits end…

I have been to 7 neurologists over the course of several years (started having headaches at age 9, went to my first neurologist at age 14). I have tried every kind of doctor known to man. My pregnancies and breastfeeding were nearly headache and migraine free. For four years (two pregnancies and a year each of BFing), I was in HEAVEN! I had never felt so good. A month before I stopped BFing my son (May of this year), my headaches and migraines began again. They are unrelenting (as I said above)….

I called my RE’s Physicians Assistant (whom is overseeing my PCOS and medications), and she referred me out to a neurologist who is supposed to be very good. I called the office and asked if the neurologist does anything other than the traditional migraine medications (such as Imitrex, Migravert, etc). I have had no success with these medications, and no success with the preventatives. I think my migraines are related to my PCOS. I think they are hormonal. The front office said that this doctor only deals with traditional migraine, and that they hadn’t even heard of PCOS.

I took Metformin while trying to get pregnant with my first child. I felt like my headaches were much better on Met. I am now on Fortamet (Met gave me too many side effects), and I am not getting any relief. I am also taking CoQ10.

HELP ME! Please tell me what should I do? Neurologists have always just wanted to put me on medication after medication, with no real help. I need to find out what is CAUSING these migraines. I am getting depressed. Everywhere I turn for help is a failure. I cannot live my life like this. I can function, but I am in constant pain.

Are there PCOS clinics out there? Do they help specialize in migraine? Where are they?

What else would be a good option for me? Headache clinics? Non-traditional doctors? Herbs?

I cannot afford more MRIs, CT scans, and the like. They have shown nothing in the past 10 years, and I am expecting that there won’t be anything on them now.

Any advice or suggestion would be appreciated. I felt like this in college, was bounced around to so many doctors, and I ended up in a very deep depression. I am trying to fight this right now, before I fall into that hole again.

Thank you in advance,
Allsmiles

Allsmiles · 09-09-2005, 01:50 PM

Migraine ladies, I know that you are out there. Please office advice/suggestions.

Thanks,
Allsmiles

Jashobeam · 09-09-2005, 02:53 PM

My migranes I'm sure were related to my diet. When I was TTC and pregnant and on low-carb I had almost no migranes. I cannot remember the last time I had one. Before I was having them often enough to take pills at least once every other week or so. I thought it was my sinuses, but it may have been something in my diet. I gave up bread, caffeine and table sugar. I dont' know if it was one of those, but I almost migrane free.

dna · 09-09-2005, 03:09 PM

I did accupuncture and it helped immensley...now I have stopped for a month they are slowly coming back..they figured I am having neck muscle spasms that are contributing to them...did you ever consider your sleep as well as diet ?

Good luck, I know what its like to be down for weeks at a time

momo3 · 09-09-2005, 03:35 PM

Mine are totally hormonal & got much worse as my PCOS got worse. When I first started met, the migraines subsided for almost 4 months, but then came back with a venegence. I switched Drs (for many reasons other than the migraines) & she started me on Topamax & increased my dosage of met. Topamax is supposed to be good for women w/PCOS b/c it has some androgen inhibiting properties. I'm on an extremely low dose because I have a history of kidney stones & I'm extremely sensitive to meds that make me drowsy. Topamax really zonks me, but I take it at bedtime, so it's not that big a deal. If I was able to tolerate a higher dose, I'd probably have better results, but it is helping. As I said in another post, I've got from 15-18 doses of imitrex/zomig a month to 8-10. I have a really bad weeks during & immediatly after af & then a couple of good weeks, so those 8-10 migraines tend to cluster together.

A gal at my church hasn't had success on any traditional preventatives (but is not PCOS) & she regularly has Botox to her neck & it really helps her. We both see the same family physician. I haven't seen a neurologist yet, as I'm new to preventative tx & I've had progress with what I'm doing. I sincerely hope you find help. It is soooooo hard to lose so much of your day/week to a headache & know that you can't get that time back.

(((((((((hugs))))))))

jlbrown122 · 09-09-2005, 04:44 PM

Since you didn't have problems with migraines while you were pregnant and breastfeeding, it sounds like your migraines are definitely hormonal. The traditional migraine medications never did help me either. I used to work for a chiropractor and while I was working for him, I got free chiropractic adjustments, massages, and acupuncture. I did not have near as many problems with migraines during this time and I didn't have to take any pain relievers, I would just let my boss know when I felt a migraine coming on. We used to have patients that were afraid to get the chiropractic adjustments, and they responded well to just acupuncture and massage therapy. Good luck and I hope you find something that helps you.

Allsmiles · 09-10-2005, 02:21 AM

Thank you for your replies...

Jashobeam - How did you learn the low-carb lifestyle? I am not good at learning from books... I am a teacher, but I have always learned best when I was involved in it. Touch it, feel it, do it, learn it. Maybe a nutrition class? I would be willing to change my WOE. Went on an elimination diet once for over a year. I lost tons of weight. It was tough, and didn't change my migraines, but I was willing to do it to see if it would help.

dna - I sleep like a baby. I get 7-8 hours a night, religiously. I do find that my neck is SO stiff though. I always have my husband giving me neck and back massages, but I never feel like he is doing it hard enough. Maybe I have knots? Diet suggestions?

momo3 - I will have to research Topomax and Botox. Thanks for the suggestions. Does topomax have any side effects for you? Are there any long term side effects from the Botox?

jlbrown122 - My husband is a physical therapist and HATES chiropractors. Regardless, I did about a year with a chiropractor once, and it did help a little. I don't know if it was just getting to relax in the middle of the day, or what... It wasn't life altering help, but I was a bit relieved. Acupuncture.... That is one that I would try! Massage therapy too. I wonder if insurances cover those services.

A question for you all... I look normal. I mean, I don't look ill. I definitely don't look how I feel. I don't feel like my doctor is really understanding how much pain I am in. I am not one to go into a doc's office and break down (although I was considering suicide 5 years ago when seeing my final neurologist... COMPLETELY broke down in her office, and she is the one that diagnosed my PCOS). How do I get the doc to see how this is affecting my life? I can't seem to get my point across. She sort of has the attitude of "Well, lets just give this a try (wink wink)." I cannot handle this anymore. I am seriously becoming depressed with the whole issue. I think the office is good, but I am not thinking she knows enough about PCOS and migraines to help me effectively. What would you do? Should I find another doc? Find a holistic clinic? There is a PCOS doctor in Denver. I don't think my insurance would cover her, but I would go into debt at this point to figure out what's going on. I would have to drive about 1 1/2 hours to see her.

Yikes. I am full of problems lately. Everything is sort of bombarding me at once.

Allsmiles

SuzanneStar · 09-10-2005, 02:27 AM

((((((Allsmiles)))))) wamr hugs to you hun.

I used to suffer from bad migraines but i started to keep a trigger diary of things that would set the migraine off.

the most common are
Smell of Cigars (is on of my personal triggers)
Smell of Bleach
Cheese
Chocolate
Coke
Coffee & Tea
and many more.

Have you ever tried Migraleve hun they are a really good tablet that takes away symptoms when a migraine first starts to get painful.

hope this helps a bit hunni

Love & Light
Suze
xxxxx

*Shellie_Star* · 09-10-2005, 08:31 AM

As mentioned previously, low carbing also reduced mine immensely. i suffered a few times a week before but now and practicaly NEVER left my house because of it. Now I only suffer about twice a month. I always get migraines around the time of AF too as I have a reaction oestrogen my body, which is what your body naturally produces so there's not much I can do about that! Hope you feel better soon and find the causes. x

momo3 · 09-10-2005, 09:50 PM

Quote:

Originally Posted by Allsmiles

Does topomax have any side effects for you? Are there any long term side effects from the Botox?

Topamax makes me really drowsy, so I just take it at bedtime. It also has left me with a weird aversion to carbonated beverages; they taste like metal. I posted about this side effect here & found out that lots of people have it, too, so it must not be unusual.

As far as the long-term effects of Botox, I don't know. I don't personally have those treatments. But, the girl I know has been having them now for over a year. Seems like she goes every couple or three months.

I so get what you mean about not "looking" sick. I can almost always function with a migraine, but it's not fun. I often wonder if they'd pass more quickly if I'd just stop & let the pain take over for a while and get it over with. But then one of the kids needs some juice or it's time for church & I've got to try to forget about it and keep going. It would be so much nicer to not have to just "keep going" and enjoy the "going."

((((((HUGS))))))) some more & GL with your research!!!