@Belindy -Iām more and more convinced by the hormone link (not for it all but the worst times do tie up with my mid cycle and menstruation). My specialist warned me that perimenopause would ālob a bombā into my recovery. I try not to use triptans, when I had chronic migraine headaches several years back before I was on a preventative the pain (and all the other associated symptoms) had got so bad that I became too reliant on triptans. I had a prescription for sumitriptan and also one for Rizatriptan (Maxalt) which is more expensive but melts in the mouth, so good if your stomach is upset. I found triptans helped with the worst of the headpain but I still felt wiped like Iād been out clubbing and drinking all night. My GP isnāt keen to prescribe them for over 55ās due to stroke issues.
I find that the pizotifen has dampened my symptoms down but canāt quite quell them during some periods. I take 4.5mg a day, Iāve been on pizotifen for just over 2 years but built up the dose really slowly. Iāve been on 4.5mg for almost a year. Iām about to add in Clonidine. The idea is to stay on this combo for a year and then taper off. My specialist said I was a very hard case to treat and that it would take a long time. Iāve had MAV for decades largely untreated so he said Iām like āa nail that is hammered hard into wood and is so difficult to prise out it may take many triesā he said that if a younger person came to him who hadnāt had MAV long then treating them would ābe like pulling out a thumb tackā it would likely be easier and quick . Treatment would be the migraine 6cās diet, a med for about 9 months to a year and then taper off to see what happens. So perhaps you would be in this latter category. If you taper off and stop pizotifen in June and the dizziness returns you can always go back on it and try again. My specialist loves his metaphors, he says the meds are like using a plaster on a wound to allow it to heal. You peel it off bit by bit (tapering the meds) and may be able to take it off or have to stick it down again(stay a bit longer on the meds).
You also asked about Perimenopause - Iām 56 but feel like Iāve been perimenopausal for over a decade. In the past 6 years my periods became more frequent until it was every two weeks, not surprising I got chronic migraine really. A friend who runs a menopause clinic suggested I get a Mirena coil fitted to try to lessen the number of periods, perhaps I should have done that in retrospect as I wasted time building up the dosage on propanalol that didnāt work for me and then amitriptyline which did work but the GP would only give me for 6 months. I hope Iām in the end game as the past 6 months my cycle has elongated out again but is really unpredictable and when my period comes Iāll be very nauseous and have a headache, feel nervy, heavy bleeding - often need to take tranexamic acid to control it. The neurologist and neuro otologist have both said that if my MAV is heavily period linked that things could really improve for me once my periods stop but I try not to think that way as I know several women (including Helen on here) for whom things started, got worse or stayed the same once they were in menopause.
Oh yes it is definitely linked! Triptans have been great. I didnāt realise the stroke link over 55. Oh no! I feel quite weird on them I must admit. I take Maxalt and sometimes when Iām teaching, I feel a bit spacey.
Ok, so more frequent at first then less so after a while. I am dreading peri - honestly. I feel I could lose any control over it I had gained.
You sound like me, migraines that are strongly linked to hormones. The way I see it @sputnik2, is that if it has given us grief during the period era of our life, it must be due to fluctuations of hormones and should settle after menopause. Those that first experience symptoms AFTER menopause must be caused by a different reason - ie not fluctuations, but something else entirely. Iām holding onto hope thatās for sure!
I donāt think there is any solid evidence of a stroke link to Triptans, even in older people unless they also have high blood pressure. I think I just have a difficult GP. Iāve recently moved house to a different catchment so Iām changing GPās.
I think everyone has a different experience of perimenopause. If you search on the site I think there are several younger women who are using the mini pill or the mirena to control periods and symptoms (along with meds). My younger sister is a OBGYN, she doesnāt have a migraine or MAV history but she has a Mirena and intends to keep it and mess about with bio identical estrogen gel to āsail throughā her perimenopause.
Oh I have the mirena! I got my second one a month ago. Migraines same. I love it as you donāt really get periodsā¦ but that makes it hard to know when the migraine is coming as the hormones are still there.
You could def get some handy advice from your sister
Thereās strong evidence - a paper @turnitaround posted on here etc - links have been proved hormones causing fluctuations in ear pressure. I guess main trouble is, unlike insulin, thereās no way of measuring and adjusting for the deficits/excess whatever to rebalance everything.
As @sputnik2 posted you will find lots of references to each hormone linked variant on here. I think best chance of it all clearing post menopause is amongst the post Partum starters. I have one personal friend total proof of that. First migraine hit within days of birth of first born. She only ever had straight migraine but they stopped the instant she passed her last period. Never to return.
Mine Iām sure are hormone linked. I never experienced MAV like symptoms until menopause but I had had sick headaches and what could have been Abdominal Migraine as a teenager and was always incredibly motion sick. It was many years later I realised my headaches must have stopped just about the time I started my periods. I never had any migraineous symptoms through my fertile years but vertigo attacks hit me a few months after I had what turned out to be my last ever period. Have since read itās not an uncommon pattern particularly the headaches to return as imbalance after a total break in symptoms. Itās supposedly much less common for true straight classic migraine to just morph into vertiginous symptoms although, as we all know, it happens. One neurologist told me my symptoms are āall backwardsā for it to be hormone driven however she has also told me foods cannot affect the condition so migraine diets are not necessary and other things I have subsequently disproven so I added her hormone comment to the scrap heap too.
Oh I certainly sailed through mine no probs. One point very much in my favour at the time was Iād never even heard of it. In fact it wasnāt til I hit this site I ever came across the word. Just sometimes total ignorance can have a distinct advantage. Iād heard whispered horrors about the Big M between Granny and others years back but never had any cause to anticipate any problems before. As it was I had none, my normally heavy periods tended to lighten up quite a bit, I once missed one, had maybe six others and then they just stopped for good. Nothing untoward at all, no mood swings, nothing so unless the Brain Fog every morning which I had for about a decade and the MAV which arrived later were related perimenopause for me was a big non event. I have never reached a conclusion about the Brain Fog. Iād had MAV for years before I read there could be a connection with either or both. In fact it was only last year I discovered thereās a long list of symptoms that can apply to either/both conditions. I always think itās best not to go looking for trouble. It seems to manage to come find me quite quickly enough as it is!
Yes the compete opposite to me (so far). Although Iām 100% sure yours are hormonal linked too, I feel your triggers are completely reversed . What my body hates - yours must need and vice versa in terms of hormone level and the response the brain makes with its neurotransmitters - particularly Serotonin. I know of lots of people who say they have had hormonal periods and they stopped after menopause. Still, hope is necessary for me to hold onto, even if it is years away. Hope youāre feeling better Helen. X
Ah Serotonin. Apparently levels are lowest during winter and my symptoms have always been worse through the winter seasons, in fact I barely remember any episodic attacks occurring other than in winter. Another link there somewhere no doubt.
āMyā pattern is uncommon but not unique I have read. Yours is much more common and I am sure you have a strong likelihood for it stopping at or post menopause. You, indeed all of us, can only travel in hope. Thereās no other way. In your case could well be a cure might be discovered long before you reach menopause anyway. Thereās plenty of time.
I have just had results through for a test Iāve been doing via my Nutritionist called the DUTCH test. For those that donāt know, you basically take a urine sample by weeing on a special paper and allowing it to dry. You do this each morning of your cycle starting day 7 until your next period starts. I also did a cortisol test as part of mine. You then send it all off together and wait for results. Iāve been convinced I was perimenopausal for years as I have many of the symptoms and both my Mum and Nan had an early menopause. However my tests have shown that I am not, but that I do have an oestrogen and progesterone imbalance! I kept a symptom diary to run along side my test and I can correlate the days when I felt āoffā to the imbalances in my test. Absolutely fascinating! Waiting for my appointment this week to discuss next steps but it definitely feels like a forwards step to hopefully managing my hormones and getting a better balance with my vestibular symptoms. Also have a referral to the doctor as my cortisol levels were so low as to nearly not register which could also be impacting my dizziness etc. I thought worth mentioning as hormones are a massive trigger for me and I am hopeful I can start to see improvements. Fingers crossed!!
Vitamin D could be a factor here. Do you take daily Vit D supps? Iāve started and hope it helps. You made me realise that my two attacks occurred in winter and beginning of spring. Interesting
Not sure where it all fits together but there does seem to be a seasonal element. Interestingly a friend, and her doctor, have noticed a seasonal element to - of all thing - labyrinthitis. One Spring she personally knew seven cases at one time!
No I donāt take any supplements at all. I should do for other conditions however I find taking tablets very difficult as I have a GERD diagnosis and tend to get extreme reflux from almost everything. Some allergy to pill coatings consultant who popped lots of camera gear down my throat a few years back told me. Some supplements came in liquid form but unfortunately they re always orange flavoured and have exactly the same effect on me as the solid form.
I did manage Vitamin D3 tablets for a whole week once but had to stop because I suddenly started experiencing lots of BPPV type vertigo! Doctors couldnāt believe it but āourā Erik, @ander454, who seems to have forgotten more about vitamin supplements than I will ever know, then told me synthetic Vitamin D is actually a synthetic hormone.
How goes it now. I assume you probably saw a functional doctor? Thatās about the only way of discovering levels of such things. The NHS doesnāt do root causes. Interestingly Having had occasion to read rather a lot of material about Vitamins, mainly the D3 and all the Vitamin B complex ones the possible links with hormonal affect that probably influences our condition begins to really shine through. Vitamin B6 apparently has a strong influence over all other hormones and, from my own very recent experience, Vitamin D3 certainly seems in control of hot flushes/night sweats and autonomous symptoms associated with both menopause and migraine. Perhaps the NHS really should be routinely checking vitamin blood levels in ladies of a certain age who are experienced problems such as ours,
Any luck yet? I would work on the principle that treating a discernible root cause should give a far better prognosis than using so called āpreventativesā to treat symptoms. Bound to.
Goodness, so much has happened since that appointment! My results basically showed that I have an imbalance of oestrogen and progesterone. I donāt produce enough of either, but am not perimenopausal (which was a shock as I have assumed I was for a few years now!). Although I donāt produce enough oestrogen, my ratios are off - so I produce a higher ratio of oestrogen and my progesterone levels are very low post ovulation. Also low testosterone and low cortisol. I did a symptoms tracker alongside my test and I can match pretty accurately the wobbles I had with my cycle mapping results. So interesting!!! Iāve since had blood tests to further investigate my cortisol levels and they showed issues with my thyroid. So now waiting for further tests on that but they think there might be a link between the labryinthitis that put me in hospital and triggered my vestibular migraines, and may have also triggered damage to my thyroid. Joy of joys! I think that the tests were useful to do as theyāve given me a lot of information and I can at least move forwards with that.
Absolutely they were useful. Any clue as to why you are where you are would be. Best outcome would be the āsomethingā, whatever it is, proves treatable. I laughed reading elsewhere Older post on here references made to how lucky women are having a cycle so hormonal imbalance can āeasilyā? Be treated. Obviously written by somebody without much of a clue really. Not as straightforward as all that I fear. Apart from anything else with MV folk thereās tolerability to consider. I guess that poster was imagining hormones could be fixed simply with HRT but that is unsuitable and indeed even unsafe for some people.
Am I right to assume all your investigations were through the Functional Doctor you saw. IMO NHS doctors are very reticent to carry out any research into cause, indeed to draw blood even either. They found an hormone imbalance. Have they also checked for a Vitamin Deficiency/imbalance as well. From all I read very recently they are inextricably linked.
Yes, through a Function Medicine practitioner - a Nutritional Therapist. Blood tests were then through my GP from her recommendations, but I can have further ones via my NT if needed. They tested for all the usuals plus inflammation markers etc so were pretty thorough. Iron levels were low but not anaemia low so Iāve been put on an iron supplement for the next month. Hormone imbalance my NT says can be addressed with diet, lifestyle changes and potentially supplements which is great as I wasnāt keen on the idea of taking hormones. Testosterone is via specific exercise as they donāt want to use medication due to the risk of it then triggering something else. Have read so many stories on here of hormone therapy triggering vestibular symptoms, plus I already feel as if I rattle!
Amazing. Looking forward to hearing more about that one. As one always associates it as being a male hormone I just hope you arenāt going to be expected to take up being a lumberjack, or maybe lumberjill.. No Iām convinced it will be more subtle than that.
Another interesting comment. Not heard any reference to diet and lifestyle changes before. When it comes to ātaking hormonesā they certainly arenāt safe for some people even if they were keen which I have never been either. Supplements are a new ball game to me too. Been doing much reading since my Vitamin D deficiency dx in January. The interwoven relationship between vitamins and hormones has to be understood to be believed and I am still trying to do both. Inextricably linked most particularly so far Vitamin D3 and hormones, and Vitamin B6 ditto.
I too have read a few of the āhorrorā tales of the resultant vestibular attacks brought on by hormone treatments. One doctor tells you local estrogen cream is very low, barely hormonal at all and the next notices youād had a script for some and tells you that was the cause of your current vestibular distress and was bit crestfallen to hear it couldnāt have been because being the overcautious person I tend to be when it comes to medication I tell her I never tried it. Guess it might not affect some people but sensitive MAVers? Um? My prescribed vitamin D3 brought on adverse hormonal effects in much the same way I imagine the cream would have done. D3 is a steroid hormone in itself or so I promptly discovered. Frustratingly enough apart from that I really felt better on it within a couple of weeks and I am sure it had a positive effect on the vestibular stuff.
This gave me the giggles! Was my first reaction too. But have already started this and itās just more resistance training. Boring though! But Iām 5ft10 and built like a (slightly shapely) string bean so canāt see me turning into a lumberjill any time soon
Iām sensitive to lots of medications too, would definitely be cautious about starting anything hormonal. Which makes me slightly anxious about menopause etc! Thank you as always for your input and wise words, hope youāre feeling a bit better now x
Really glad it raised a smile. I would not want to be thought flippant but thereās not been much to laugh about in the world in general has there lately. And they do say laughter is the best medicine.
When it comes to supplements might be best to follow MAV protocol and go ālow n slowā. But do make sure you stipulate how low. My doctor started me on 3200IU Vitamin D3/daily which was obvious in hindsight too high for me. She was very glib saying it was only a small dose and some people take 20000IU to which I replied āno this some one for sureā. She still hasnāt grasped my sensitivity levels obviously. The side effects stopped soon after I stopped the supplement however that still leaves me with the untreated deficiency.
. No Iām convinced it will be more subtle than that.