Hormones!

Am I the only that is convinced hormones are somehow related to MAV? All the Dr.'s I’ve seen for MAV don’t seem to give them much credit. They just kind of shrug it off. I’ve read several studies that say hormones can be a culprit, at least a trigger. So why aren’t Dr.'s more willing to address this!? I’ve had mine tested and they came back normal. However, I’ve read that 95% of people’s hormones come back normal. I’ve even gone as far as to buy some bio-ID progesterone. I’m just kind of scared to use it as my Dr. didn’t really have much to say about it. I will certainly address this with my new Neuro I see at Duke next week, Dr. Adkins. I refuse to take Birth Control pills as they have ALWAYS made me sick. All my MAV problems began within months of having my 2nd child. The migraines themselves started immediately after his birth. It just seems like such an obvious thing. Am I just not seeing the right Dr.? Should I see and endocrinologist? I’ve read that you must do a saliva test to get accurate readings and you must test at different times during the month. I just can’t find a Dr. that gives this a whole lot of credit. Even Dr. Kaylie at Duke shrugged it off.
Has anyone had success with any kind of hormone treatment for MAV???
I’m 32 years old, a little young to be in perimenapause, but certainly feel like hormones are off!

I think hormones are definitely a factor for me. I believe that I have started having the dizziness problems right after being told I was in menopause. I also have read that menopause can be a trigger. I am only 45, but have had hot flashes, night sweats and my fsh level is 63 (above 20 is considered menopause/peri-menopause).

Donna

Hi Donna,
Has anyone suggested any hormone treatment? Forgive me, I’m not too educated in hormone treatment, I just am curious if there is anything they can do to regulate hormones and maybe give us some relief?

I haven’t been offered any hormone therapy especially since I had breast cancer when I was 28, so they wouldn’t give it to me anyway.

I think you should pursue it though if you think your hormones have something to do with it.

Good luck,

Donna

Hi
I thought hormnes too since i was 42 when this started. I had very low progesterone, took the bioidential stuff, and nothing changed MAV wise, but my cramps went away. Unfortunately, I got my period twice as often, so I bagged it.
I don’t have mav fluctuations with my cycle, but I still wonder about those pesky hormones.
Kelley

i believe mine is definitely hormone related. mav started for me when i was 10 years old (when my hormones started kickin in) and had my worst attacks near the end of both pregnancies, after delivering (when your horomones crash) had the worst attacks of my life and 2 days before my period my dizziness always gets more vicious. coincidence? i think not. i am on the lowest form of birth control and take it all the way through to keep my levels at bay and never get my period. i can’t stand to get anymore dizzer than i already am once a month.

go with your gut. i am sure it is related to your horomones.

There is no question about fluctuating hormones being a migraine trigger for women. Some women experience it every month, some only when the fluctuations are more pronounced, like when periods first start, around childbirth, or perimenopause.

The question becomes, do you really want to “treat” hormone fluctuations? Monthly fluctuations are, of course, normal. Those of us who are migraineurs are more sensitive, so in addition to any other triggers you may have, what may be perfectly normal hormone fluctuations may still push your trigger “load” over the top and bring on symptoms for you. So can a change in the barometric pressure, if that’s a trigger for you - we migraineurs are like canaries in a coal mine.

MAV started for me and my mother during perimenopause, and our dizzy spells started at exactly the same age - only I didn’t even know about hers because I was away at college (my younger brother, still living at home back then, told me about it after I went to urgent care due to a severe dizzy spell - by then, Mom was deceased).

Your hormones probably aren’t “off” at all, since your tests came back normal - when you’re having MAV symptoms, it can amplify everything that feels bad and you might THINK it’s due to female problems, but it’s more likely due to migraine stuff, which is simply reacting to normal female stuff (not anything abnormal, which I think is what you’re worrying about). It can be difficult to treat the MAV - I’ve been fortunate since Topamax worked for me. Hope you can find a reasonably good treatment for your MAV.

I certainly feel that hormonal changes are an issue. I have noticed symptoms with the menstrual cycle, as well as hypoglycaemia which triggers a set of hormonal body responses, including adrenaline. I just changed pill type, and will see whether symptoms ease.

However, my impression from observation of my body, is that hormonal fluctuations are just one kind of fluctuation that can tip off MAV. Hydration levels, stress levels, sleep (too much and too little or broken) and changes after sporadic exercise are also fluctuations that can trigger the little bad@$$ MAVIS (as I now like to call her).

I also thought of having hormones checked but i can just bet that test results, like just about everything else I’ve had tests for, will come back ‘normal’. Still, if you ARE having hormone issues and test results reveal this, then it is good to restore that balance is it may be one more trigger you can eliminate.

Thanks everyone! I was starting to feel nuts! Although I’m sad so many of us are in this situation, it’s nice to know I’m not alone! I’m just not sure what exactly they can do???
Has anyone had any success with hormone therapy? Do you think hormones will ever just “readjust”, or go back to normal levels? I got my first few BPPV attacks after my first child but NOTHING like this! Should I go see and endocrinologist???

BTW, the Verapamil has really helped with the daily headaches but I still have so much rocking vertigo. Does this mean it’s helping I just need to be patient to see if it works on the vertigo?

TINA - There’s a huge difference between hormone “fluctuations” (elishat’s are, according to the tests she had, completely normal) and hormone “imbalances.”

There are a lot of quacks out there who will try to convince you that if you think something feels “off” with your hormones then it must be, and they are more than happy to let you hand over wads of money every month for whatever remedy they’re peddling that will make you feel better (it will surely make THEM feel better, and with a little placebo effect, maybe you will too for awhile). But it’s not based on good science, like the tests elishat had which were scientifically based, and they showed NO problem with the fluctuations that she’s having. After all, that’s what a monthly “cycle” is: the perfectly NORMAL ups and downs of hormones doing what they’re supposed to do to prepare for the possibility of a pregnancy. If your cycles are not regular, I don’t think that recommending hormone replacement of some kind is the first thing a doctor should do, but I am surprised that you haven’t had an ultrasound or something like that. Or have you had one already, and it was OK? I’m not sure a homeopath is the best route if you have irregular periods - other things can cause that besides hormone imbalances, and I think that should be explored with a doctor.

ELISHAT - When I got on Topamax, it took me a few weeks to get up to the therapeutic dose. The severe dizzy spells stopped right away. But, I continued to have daily wobbling (rocking) and head motion intolerance (I’d feel like my head was still moving whenever I moved then stopped moving it) for about 3 months. It took that much time for the daily “rocking” as you call it to go away, so try to be patient. Some other people who post here have found this to be the case as well for whatever med they took - the daily rocking takes longer to respond, so hang in there. The fact that you’ve shown improvement with your headaches suggests this is the right med for you and you’re on the right track!

My neuro, who specializes in migraine especially women and hormonal issues, told me that a woman has changes in her migraines 5 times in her life: when they first get their period, pregnancy, perimenopause, menopause and post menopause. My MAV didnt start until a year ago but I’d been having “normal” migraines since I was 16. Along with the MAV came severe tinnitus and daily headache. Neuro said its hormonal - perimenopause in my case. He’s not a big believer in hormonal treatments so we’re trying other stuff first.

— Begin quote from "Tamsha"

My neuro, who specializes in migraine especially women and hormonal issues, told me that a woman has changes in her migraines 5 times in her life: when they first get their period, pregnancy, perimenopause, menopause and post menopause.

— End quote

This is really interesting and has certainly held true for me. My neuro says that most of his patients suffering from MAV and other significant changes in their migraine pattern are women in their mid forties. But short of hormonal treatment, which I haven’t even explored is there a way of specifically addressing the fact that the trigger is hormonal? Or is the key just to try to control all the other triggers?

Alli

Other than checking your hormonal levels at different times of the month and noting any other menopausal symptoms ie. hot flashes, not really. I’m 47 and have no other menopausal symptoms other than the change in migraine. Because MAV started now, he pretty much figures perimenopause is the cause and we are working on prevention. His orders were as follows:

  1. no caffeine
  2. no aspartame
  3. no painkillers of any kind (Advil, Tylenol, etc) unless absolutely necessary
  4. exercise at least 3 times a week
  5. drink tons of water
  6. reduce stress wherever possible

Still trying to find the right med combo.

@Mary Alice- I have not had an ultrasound, my Dr. didn’t even mention this. Do you think I could have some kind of cyst or something? I had an IUD put in last Dec. and had it removed within 2 weeks bc it made me feel like I wanted to die. I’ve never really been the same since. Maybe I need to bring an ultrasound up.

This is all great and helpful info from everyone. I am praying my new Neuro, who is female, will have some more answers on hormone treatment for me.

I have the same question as Alli, do you treat the hormones or is it effective to treat MAV as a whole.

ALLI - The key is more research so they’ll get better treatments for migraine!!!

:!:

Seriously, I think you hit the nail on the head. Hormone replacement (via pills or patches) is something that is now generally recommended for only very short periods of time because of the risks associated with it. Personally, I had to go with a “local” version (administered locally) that helps keep the skin “down there” from ripping due to thinning of the skin from lack of estrogen (apologies to the boys who are following this icky girl stuff). This problem doesn’t happen to every woman in menopause - I was one of the unlucky ones. This version allows relatively little to get into the bloodstream, but some does go there. I’m sure it affects my migraine brain, so even though I’m over a year into menopause and it was perimenopause that caused my MAV, I think that medication itself now brings on some MAV symptoms! (So I had to increase my Topamax, and now I’m better.) I’m kind of stuck!

And I’ll admit that I’m scared - don’t like all the cancer risk talk on the literature that comes with the stuff. That’s why I think it’s best to work with all the triggers we can (regular sleep, regular meals, regular exercise, staying well hydrated, food triggers if we know them, etc.) and stay away from manipulating hormones uless it’s absolutely necessary. Migraine is bad, but it doesn’t kill you. Cancer on the other hand, does.

ELISHAT - NO!! I don’t think YOU should ask for an ultrasound, unless you’re having periods that are “all over the place” like Tina said she was. My ultrasound suggestion was for Tina, whose irregular periods are of concern to her, as they should be if it’s more than a few days late each month. She’s entitled to a workup for that, and an ultrasound is a non-invasive way to have a “look-see” for things that might cause irregular periods - cysts could be one of those things (they’re very common, and usually non-cancerous).

I tend to agree with Maryalice. I think hormones flucuations can cause problems for us, but not the constant dizziness that comes with MAV. I’d be more inclined to spend efforts in other areas where you may see better/faster results rather than hormones, which can be very hard to control, at least that’s my opinion. Even with Topamax on board I still can get migraine headaches around my period. It’s out of my control and it does suck, but Topamax does dial it down.

When this started for me two months after my son was born, I did see an endocrinologist and found that my estrogen level was 20 when the normal range was 60 I think it was. The premenopause level is below 30 so I was very low, even for after birth when levels are typically lower. But my FSH levels were not indicating that I was anywhere close to menopause. They started me on estradiol and it didn’t make a difference.

My MAV symptoms are worse around my period and I’ve always had bad PMS so hormones have always been a trigger for me. But relief for me has come with Topamax and SSRIs–Lexapro lately.

Have you tried any migraine meds?

— Begin quote from "~tina~"

maryalice I have only had out of whack cycles since having my son. My cycles have always been 33days-19dpo for O and 14 days LP. Even after having my daughter they went back to that, then after my son they have been all over the place. When I mentioned it to the Dr’s i saw they suggested going on the pill to regulate them (and for birth control) I am going to request an US next time i see my Dr as I beleive I have a cyst growing on my ovary :frowning:

My reasoning for seeing a homeopath is i think they will be more thorough with the hormone testing. If anything is found I won’t hesitate to go to my GP and follow this up. Going to my GP and asking for the tests based on my ‘feelings’ will result in him, at the very most ordering routine bloods which won’t even be relevant! It can’t hurt to have another set of eyes and ears look and listen to whats going on and a new perspective.

ETA- I’ve been taking Prothiaden 75mg for the past year.

Tina

— End quote

Hi Tina,

Personally, I would get an US if you’re worried about your cycles. I had a GP palm me off for a year - telling me to go on the pill. Then off it. Then back on it - as my periods were going for over a month at a time, non stop (sorry if that’s TMI guys and there’s more coming so you’ve been warned), incredibly heavy and excruciatingly painful. Eventually I went to a new GP who straight away sent me for an US. Turned out I had a massive fibroid. Once that was removed all was right as rain again. When it doubt, check it out.

I have to disagree with you on your reasoning for seeing a homeopath. Apart from the fact that their ‘practice’ for want of a better word has NO evidence nor plausibility to support it I can’t understand why you think a homeopath would be more thorough than an actual doctor. Save your money.

I definitely think hormones play a huge roll!! This all started for me about 2-3 months after I had a full hysterectomy. I am 40 and went straight into menopause :(. Even though I started estrogen replacement right away my body didnt absorb it, after my body was depleted completely from the remaining hormones of my own I had, that’s when things started going down hill for me. My estrogen level is better, although not great. At least I feel better and am mostly through the roughest of the MAV. Just an FYI-I would not recommend a full hysterectomy unless absolutely medically necessary!?
Hormones/Estrogen can really wreak havoc on us!!

I have been battling this dizziness for quite a while, but I did feel better when pregnant. After the birth of my second child I felt fine and then 3 months into it the brain fog and all of the horrible sensations when I first got this horrible illness returned. It’s like I am right back to square one. At 3 months is also when my first period started after the pregnancy and my hair started to fall out. I am angry bc I hate feeling this way and all I want is to be a normal, good mother to my children. Makes me so sad I can’t stop crying about it, I love my children so much and I am a dizzy mess. :frowning:

I think mine is 100% hormones. It all started 2 months after giving birth and got worse after I got my first period after having my daughter. Not to mention my symptoms get worse right before, during and right after my period, and are topped off with vertigo at either the beginning or end of my period…never any other time of the month. I asked my neuro about hormones and he said there is a hormonal connection for sure, but since homones fluctuate so much it isn’t worth testing. Not sure how much I buy into that.