The Vestibular Migraine Community

Hormones


#1

Hello all,

I haven’t posted on the forum in awhile as my MAV has been somewhat under control.

i’ve had it for a year now. It was hell until I was put on Amitriptyline in January.
I worked my way up to 20mg per night.

I now am back at work and living my, mostly, normal life.

Even though ami has raised my threshold it has not fully stopped the vertigo.
I am still getting bouts with the dizziness.
For months I charted the days I was feeling really dizzy.
In a super nerdy way I input them into excel and found out they match identically to my monthly cycle.
I get dizzy days about 2 days before I ovulate and 2 days before my period.
These are both times that hormones drop.

I am going to have more intricate hormone testing done to see if I am eligible for hormone therapy to put a stop to these migraines altogether.

I have had hormone testing done through blood tests with my doctor and was told everything was fine.
The only other time I had migraines was when I was going through puberty in elementary school.
It seems right then to assume something about my hormones now (I was 27 when they began) is making them happen again and this will hopefully be the key to fixing them.

I think all women should be aware of this link.
i also wonder if anyone else has had the hormone saliva tests done?

This is a really horrible disease. When I had it every single day I had trouble recognizing anything good in my life. I hope everyone here finds some way to get relief and am so happy that this forum exists.


#2

Laura
I had the saliva testing done about six years ago. Mine was a thyroid test as the thyroxine I was taking at the time wasn’t helping enough and the blood tests showed everything was OK. Fortunately I had a GP who was prepared to do further testing. The saliva test showed my T3 levels were too low and have been supplementing since with a special compounding med which has made a huge difference. So for me the saliva test was very worthwhile.
Hope it works out for you.
Barb


#3

Hi Laura, a few years ago I had both blood tests and saliva test done to find out my levels of estrogen, progesterone etc. The blood tests were done on the NHS and the saliva ones were carried out privately.


#4

hi laura
thanks for your post - i definetly think the hormones affect me - i def get more dizzy around my period, and i have recently had a new Mirena Coil put in and i am sure it has ramped by my symptoms so am planning to have it taken out - going to speak to my consultant tomorrow about that, i might also ask him about whether its worth testing for hormones - what tests do the doctors run, and what are they hoping to find out by running the tests?
regards
cath


#5

This is the site I am currently considering (for any interested)
johnleemd.com/store/prod_stest.html
I had a friend who was having really serious headache migraines who had the saliva tests done and from there worked on her hormone levels with natural supplements and is now basically migraine free.
She encouraged me to have the testing done.

Brenda: Thanks for the feedback! What is the NHS test? Did you order the saliva test online? I think that it what I am going to do.

Barb: This is really interesting. I had the thyroid test (which they used my blood) and said everything looked ok. (I believe she said my FSH levels were good?)
I’m so looking forward to having the saliva test done after reading your post. Thanks for leaving feedback.

Cath: I would really encourage you to get the hormone testing done as well. Check out the site above. There is a clear link in women between hormones and migraine and vertigo.
I have spoken with other female family members who have said things like "i had a couple of years where I was dizzy, then it just went away"
Which leads me to believe they were likely going through hormonal changes (as i likely am) and experienced migraines (which I clearly have a genetic predisposition to)
Most of the women in my family have had different forms of migraines at different points in their lives.

also - advice on the IUD. I have had a copper coil IUD for about 4 years. it’s fantastic. I have never had problems with it.
The mirena iud has hormones and I opted for the hormone free its birth control option because my hormones have always been super temperamental.
From a young age I knew I had more extreme pms/hormonal sensitivity than my other friends. I have worse mood swings, weight gain, bloating etc.
So the birth control pill (hormones) was something I never wanted to mess around with.
The copper iud has been a an amazing birth control option for me. no hormones!! no pill!!
also- the pill is risky for those of us who have atypical migraines. We are at a higher risk for strokes and clots. The first thing my doctor told me when she diagnosed my atypical migraines was - "you can never be on the pill"
So phewf - glad for the iud.

The test I will have run is this:
Female/Male Saliva Profile III (8 Tests)
The works, provides the most complete and in-depth evaluation of hormone balance, imbalance and interrelationship of specific hormone levels as related to symptoms of menopause, andropause and adrenal function. Eight Tests: Estradiol (E2), Progesterone (Pg), Testosterone (T), DHEA’s, and “Diurnal Cortisol” (All four cortisols) morning (C1), noon (C2), evening (C3) and night (C4).

Keep in touch! - good to know how other hormone-sensitive migraineurs are doing :slight_smile:


#6

I spent a lot of time reading John Lee’s site too. Actually read a couple of his book on balancing hormones. I guess he was my intro into the whole subject.

The NHS test was to measure my sex hormones, a blood test taken in the morning.

Yes, I ordered the saliva tests online at a clinic here in the UK. In fact, they were exactly the same 8 tests as you are going to have done.

I also had some saliva thyroid tests done. I have reams of paper work from them all!

Good luck with your tests.


#7

Very interesting stuff. I’ve had the full hormone blood work done, it showed my dhea hormone was low, but my GP said that can also be explained by having high anxiety and at the time it was super high. It’s coming up to a year since I had it last done. I would be really keen to get the works done like you’re having. Laura, you’re on a relatively low dose of ami, have you considered increasing it to see if it could knock the remaining hormonal dizzies out?


#8

I never even thought to have hormone testing done. I just presumed that MAV reacted to the normal natural hormone fluctations.

Is this new theory then, that we can be depleted or low or high in some and if we even it out, MAV may react more normally? I am a little lost.

Thanks


#9

Krystal: It is really interesting. I’m really interested to see how it all turns out.
I have thought about upping the Ami but am nervous as to side effects. At the moment it’s a miracle drug.
It also helped me tackle the anxiety that comes along with this disorder.
My only side effect is that sometimes I am groggy in the morning and have more trouble getting out of bed than I used to.
I think I’ll consider talking to my doctor about what she thinks about upping the dosage and whether that might kick it for good. Thanks for the feedback.
I am so apprehensive with daily drugs. I’m really nervous to ever have to go off of it, or what might happen if I decide I want to have a baby and need to change to a more suitable drug.

Anywho, it’s definitely worth a talk with the doctor!


#10

MissMoss83

http://www.womentowomen.com/womenshealth/menstrualmigraines.aspx

Check out the above site. It has some really good information regarding migraines and hormones.

This has been research for me & just being aware of my own body’s cues.

I know I have a migraine brain.
I have had migraines when I was younger and am genetically predisposed to them.

So, as we always talk about the ‘threshold’ and ‘triggers’ this is where my thinking comes in.

  • I think that something about my life (age,stress, hormones etc) has triggered my migraine brain.
  • The ami has helped up my threshold so that I am not having serious migraines every single day
  • At this higher threshold my hormonal cycle is the trigger that is still overcoming the threshold and causing my migraines

My thought is that by addressing what seems to be my strongest trigger I may find relief.
And because it’s happening around my 30’s (27-28 to be exact) there’s a large chance that my hormones are changing and this may have caused the migraines to reappear in the first place. (The only other time I had migraines in my life was when I was going through puberty)
I have a few other hormonal imbalance symptoms, and have been “baby crazy” for the year that I have had the migraines. My hormones are definitely doing something! :wink:

I think all in all it’s just being aware of a trigger and getting it looked into.
Hope this helps… I’m not a professional, but as with everyone else on here, I’ve done non-stop research this past years because I refuse to have this illness and not try and do anything about it.

I accept that I have a migraine brain, but I want to be educated about it and be aware of my body’s cues etc.
:slight_smile:


#11

Hi all

My hormone link was exactly what ended up assisting me with my MAV diagnosis after 15 years. Prior to me working out that my vertigo attacks were occurring 3 days prior to my period, doctor for years had been mis diagnosing inner ear problems ranging from labs to menieres to anxiety! I would be unable to walk for a week and very unsteady for two. It was horrible. Then I started keeping a journal and noticed the link. Then…the docs took notice.

My dizziness started during puberty. I’ve always suffered headaches but only one true visual migraine.

Since I have been on topamax I have had 8 months without the attacks when I get my period.

I also found out my thyroid was under active. This is also now under control. I believe this has also played a role in getting my MAV under control.

Hormones have so much to answer for!!

My husband and I want to have a baby next year. So scared to see what that will do!!


#12

Hey AG, was wondering how you were getting on with Topamax! Sounds like you are feeling a lot better?

What dose of Topamax are you up to now xx


#13

LauraB- That site is amazing!!! Thank you! I have just had a brief scan through but will look more in detail as soon as I cna;/
It baffles me as to why a dr like Dr S doesn’t recognise this sort of thing however, and work with an endocrinelogist or whatever to try to reach a resolution.


#14

I’m trying the hormone replacement route after noticing a strong link between symptoms and menstrual cycle. I have about 1 week a month where I feel relatively ok and it’s the same week every month. I did the blood testing at day 21 of my cycle, which showed almost no progesterone. I’m about to start the mini-pill (progesterone only) after finding that adding estrogen seemed to be making my migraines worse.

Laura - I’m about 10 years older than you but also went a long time (15 years or so) without migraine symptoms and they suddenly came back much, much worse than before.

Any time I do research into this, it appears that so much is known about the fact that there is a relationship between migraine and hormones, but very little is known about how to treat it. Trial and error is what I keep hearing.

Has anyone modified their diet to increase or decrease soy? Likewise, any luck with cutting out hormone disruptors in cosmetic products, lotions, hand soaps, etc?
Sarah


#15

Hi all,
this is an interesting thread. I can definitely see how hormones can affect symptoms. I’m still trying to find the link with me. Like a lot of you I have had a long history of vertigo, more of a rocking sensation really. (15 years, on and off sometimes continuous for months). Although I have never had headaches. Sometimes I get pressure in my head but not what I would consider a headache… more like a “fog” or something. I just feel cloudy headed when I’m dizzy. My twin sister does have a history of migraines though. She gets the really bad headaches, no dizziness.

I never noticed a link between the dizziness and my period though. I used to have regular period and have no issues. Then about 2 years ago I began to lose some weight. I’m 35 years old, so not in menopause :slight_smile: Over the course of a year I lost 35 pounds. I felt great, but my period disappeared. On the advice of a doctor I went on birth control because my estrogen levels were really low from the weight loss. My other hormone levels were fine. I did okay for about 1 month on the pill then the dizziness came back and i stopped the pill. Interestingly before I took the pill I took progesterone for 10 days to try to get my period back (progesterone challenge). Which did nothing for my period, but made me dizzy as well. I didn’t think it had to do with the progesterone as this has happened on and off, but when the birth control pill made me dizzy, I became suspicious.

Since about January/February of this year, my dizziness is on and off for weeks at at time. Then i’m okay for a bit, then it comes back. I saw a neurologist and neurotologist who both told me they think this is all migraine related. I’m on the migraine diet, magnesium, and B12 for a little over a month. Not much change yet.

My period did come back on it’s own 6 months ago then a week ago. I wonder if all these fluctuating hormones are doing this to me.

For those of you on migraine meds… sounds like they do help. My neurologist wants me to consider taking something. I’m nervous to take pills… I always worry about side effects. I do have a lot of stress in my life for the last few years (family stuff) and I also wonder if the increase in stress has caused me more issues as well. I guess I don’t understand why it won’t just settle like it always does. Has anyone else noticed that over time it becomes more persistent?

It’s so hard to know what this is. I’ve been told so many things between Labs, BPPV, menieres (because I do have some tinnitus… which I have read can be a migraine symptoms too). When every doctor says something else, it’s hard to know what to believe. Although I’m leaning more towards migraine the more I read about it.

I’m so glad I found this forum, hopefully I can learn from everyone and figure out what to do.
Thanks!
Joy


#16

Very interesting thread. Thanks for bringing this up.

Kathy x


#17

I keep wondering what could doctors do about hormone triggers. I guess some women would respond well to birth control pills or hormone replacement, but if birth control is what set you off in the first place, what is left to do? Take migraine preventative meds?

I’m so hesitant to do it. I have had this on and off for 15 years, and it has always gotten better. But this is a serious relapse in the sense that it just won’t go away. I feel better for a bit then it gets worse again. Maybe I should just try something. I guess I’m scared of side effects… I’ve never taken anything like that before.

Joy


#18

Laura - this is excellent guidance! Thank you so much for your post and updates regarding the testing and steps you’re taking. I wholeheartedly believe that there is an absolute link to my vertigo symptoms and hormones. Like you, I too experience elevated vertigo (dizziness) right before and during my period. I’ve had a history of migraines in the past but I attribute that to the same timing you described related to when my menstrual cycles began (many, many years ago :slight_smile:). Now that I’m getting older and approaching pre-menopausal and menopause state, the vertigo is getting worse - again, I believe related to hormonal changes. I appreciate the details related to the copper IUD. It’s something I’ve considered switching to but have been reluctant due to all the “horror stories” you hear about IUD’s. Planning a visit with my doctor in the coming months to discuss further. It takes the collection of all of us who experience this horrible condition to better understand our own symptoms, learn from each other and find a sense of compassion relating to those around us who’ve experienced the same. Thank you!


#19

I am very new to the vestibular migraine forum, but I wanted to add my 2 cents. I started getting migraines 6 weeks after I had my first child at 35 (my mother also got migraines). I have been subject to mild dizziness during my life at various times-I even got dizzy on a cruise I went on. Fast Forward after 27 years of hormonal migraines, my regular migraines pretty much stopped and they turned into vestibular migraines (I am self diagnosed after doing my own research). I went to my family doctor and showed her a couple of articles about MAV and she prescribed me Effexor 37.5 mg in April of 2017. The Effexor worked really well until I just had my first break through MAV on Nov. 21st, so I went thru a glorious 7 months without an MAV. It’s good to know that there may be break through MAVs, but it was awful. I am going to ask to have my hormone levels and my thyroid checked at my physical. I did have to take progesterone for a short time when I first went thru Menopause (9 years ago), but nothing since. I never took hormone replacement therapy. I’m really fascinated at how pervasive this problem is. Thanks for letting me share. I have not been to a neurologist because I haven’t had the need yet, although my family doc gave me a referral to a neurologist. Good luck to all!


#20

Hi Sue,

Wow 27 years of migraines. You have had it rough.

Is there any tinnitus in any of your ears ? The reason i ask, we have folks with different kinds of MAV manifestations hence trying to gauge if you have any ear trouble going on.

Effexor is a good drug for MAV. Did you have any side effects taking it. Also Effexor XR is supposed to be better as it is extended release, something for you to be aware.

Could it be you did something out of the norm which could have caused the MAV breakthrough ? Trying to see if there are any triggers you can try to avoid.