Firstly I will give my history and try to make it as brief as possible. I am from the UK and the treatments and options are probably different in the US, Candada and elsewhere.
I am 54 years old and remember my first bad headache was at about 8 years old. Unfortunatey they are in my family,My Mum had migraines with aura so has my Dad,My younger sister has migraines with aura, my Granny had them and died of a brain haemorrhage and my Granddad died of a brain tumor, not a very good history! I had my first migraine with aura at 22 years old and remember it well! I suffered my first vertigo attack when I was about 25 and didnāt have another bad attack until years later, I have got dizzy occasionally from too much alcohol when I was younger. I am really shortsighted which doesnāt help especially now with the lack of focusing. I was diagnosed with āpost viral syndromeā about 15 years ago and saw 2 neurologists,one privately and paid for a brain scan who said I had c5/c6 discs that were worn so they are probably worse now and I think maybe it is a combination of things and my neck is making it worse.
The migraines with aura have continued and the vertigo attacks got more frequent when I got into my thirties and forties but not as often as the last couple of years. In the evening of February 2017 I had a really back attack in the evening,luckily I was at home and the ambulance came out. I was referred to an ENT/balance Specialist who diagnosed MAV. He did various tests but didnāt do a brain scan as didnāt think one was necessary! Following on nearly two years it has been horrendous. I am on a beta blocker and various supplements but the attacks arenāt improving. The doctor referred me recently to a neurologist but he cancelled my appointment as said he didnāt do botox injections!Menieres disease has been ruled out with 2 hearing tests. My ears seem to have fluid in them and get blocked.I have had a sinus cat scan but they didnāt bother with the ears. Now I canāt work at the moment.
I have also have ulcerative colitis and finally after two years have been diagnosed with parathyroid disease and waiting for an operation and wondering if abnormal calcium levels have anything to do with this and canāt find any answers.
Please can anyone advise?Sorry for long post. Kind Regards R
Hi, welcome and sorry to hear you are suffering, and have been for so long. I have no idea whether abnormal calcium levels are involved. Nobody really knows cause(s) of MAV. No medical people here to give you a diagnosis Iām afraid but plenty of help and support and discussion. You do seem to have alot of MAV red flags and a MAV diagnosis, so that sounds like could well be MAV.
Things Iāve picked up on, maybe your age. MAV can be very hormone linked. Fluctuating hormones maybe increasing the severity. Ring any bells? You say a ābetablockerā. May I ask which one, how much and for how long? Have you tried Migraine Diet, caffeine restriction, and the usual migraine lifestyle changes regarding sleep, routine and identifying and avoiding triggers. Youāll find info under Welcome and Wiki section or just use Search facility for specific words. Lots of valuable archive info available. If youāve already been down these roads, next step is finding a neuro-otologist or migraine specialist neurologist or specialist headache clinic and them arranging an MRI if they think necessary, and then give you advice on preventatives to try. Another alternative, if you have an obliging GP, is to read up more on MAV, Dr Hainās US website, and see if your GP is prepared to work through some meds with you. Iāve found few UK GPs understand much about MAV or migraine prevention but you might be lucky. Try to educate yourself about current treatments and be proactive and push forwards, increase/alter treatment, if necessary. You may need to add in Botox or something else to obtain more relief. I take a betablocker myself, Propranolol with great success but you need a high enough dose to get results or may even a second drug added in. Helen
Hi.Thanks for reading my post and your suggestions. Believe you me I couldnāt have done much more in my research and am already on propranolol but on a low dose as canāt tolerate high amounts. I tried amitriptyline and couldnāt take it. I am very sensitive to drugs. I am already following a migraine diet and think tyramine is a trigger as bananas and avocados cause a headache, but canāt always be sure what starts one off! I take supplements and try to follow a gluten free diet.I think it could be autoimmune and probably drugs for UC donāt help. Definitely think hormones play a part. My doctors will not refer me to anyone else as he thinks my parathyroid is making me worse as I have got abnormal calcium levels and when something is out of whack it effects everything. As I said the neurologist sent back my appointment.I wonāt get botox on the NHS!He wonāt even see me!Defintitely think hormones play a part.I will keep researching and thanks for reading my post.R.
Hi Helen. You have must have been reading my thoughts as that is the next one I am going to ask my Doctor about when I can get an appointment! My sister takes it for something else. The only thing is that it can raise your blood pressure. Do u know if u can take it with a beta blocker and have u tried it and at what dose. Many thanks R.
Yes I know it can raise BP but itās dose dependent so it may not or not by enough to worry. You can take Venlafaxine with Propranolol. Definitely. Itās one of Mr Hainās recommended combinations to try after failing the singles. I suggested it because several very med sensitive people on here have managed to take it with success where they failed many others. I havenāt tried it personally. @jojo65 takes it and will chip in if I ask nicely Iām sure. It can initially cause upset tummy I believe so that could be problematic with UC (Iāve had that myself too) but itās worth thinking about. I always work on the principle never to accept defeat. There must be something out there to improve quality of life with MAV. We are living in the 21st century after all. Iāve struggled many years with MAV. Itās no fun. One needs determination off the end of the scale to conquer it but conquer it, we must! Iād never give up as long as I have breath! Helen
Thanks for replying. Interesting you mention you have UC. Can I ask how long you have had it. I am on drugs for it which I hate taking, it is an autoimmune disease and I understood that it never goes away. Strange how you have both too.Do you have rotary vertigo like the type when you get off a merrygoround.? It is evil and mine can last for hours. If I havenāt got that I have got 24/hr dizziness with or without a migraine. Yes we must keep trying to find the source and a cure. I must the only person I know who gets excited when they go into a health shop and I hate shops!It may be the 21st century but there is still so much we donāt know.I will look at Dr.Hains website and again and see if there is anything I have missed. Thanks again Helen you have been really helpful.R.
Oh, I had UC. Donāt have it any more thankfully. Painful isnāt it. It was in 2008 it started from memory. They thought it was gall bladder at first, then UC. I had it for a couple of years. No meds though, just very low fat diet (I got even slimmer than ever) then it just went away. I had what seemed like IBS then for a year or so, then GERD. Then somehow it all went before my MAV went 24/7 chronic so retrospectively I think it all stemmed from the MAV somehow. Sure itās all linked but who knows. I have since met an anaethestist who had UC that sounded just mine as mine, and he was early fifties Iād guess and his went and came back and then went away again seemingly for good. Yes, Iāve had rotary vertigo attacks. At one time lasted 48-72 hours a time, regularly 72 hours almost exactly, then just like somebody switched it on and then, 72 hours later, off again. Then it got worse and lasted 8 full days and nights at a time. Then one December day I recovered from one attack and all the symptoms left except the 24/7 dizziness which stayed another three? Years. Then when these longer 8-day attacks occurred maybe 4 or 5 perhaps over a 6-7 week period, it really was time to find some sort of solution and I saw a neuro-otologist. (A fuller version of my story is under Personal Diaries section). Oh, just in passing, I donāt get headaches, ājustā vertigo. Havenāt had headache since a teenager. Helen
Hi thats terrible. Did you actually have the spinning non-stop for 8 days and night? How did you manage?When I get it all I can do is lean over the bath! I cant lie down or stand up its horrible. Its comes on suddenly does yours and without any warning?Its strange with the UC it went away or did it just go into remission, maybe there are different types. I had mine diagnosed with a camera. I am also sure it is hormone linked. R u in the UK might I ask. I will look at your personal diaries. Do any supplements seem to help?Thanks R.
Yep, non stop. Best practice was to lie in bed, eyes closed and not move a muscle in the dark for hours day after day. Fortunately my husband could help with getting to bathroom and did everything, even hold straw to my lips to drink. Couldnt tilt my head. Iād just lie still only moving to vomit. Iāve been totally unable to stand, yes and/or walk and walked into walls! Darenāt open eyes you see. Mine virtually always started overnight. Iād either wake up with it or dream I had it and wake up with it. With UC, GERD, IBS and gallbladder, cameras found nothing with me nor tests or scans. No evidence of UC, gallbladder in perfect condition. Iām in UK. Itās hormone related for me. First vertigo attacks occurred five monthsāish after my last period. Though it was years later I realised the significance. Pretty near the only time I ever got GERD recently was trying supplements. I gave up. No supplements. Actually I got a vertigo attack within days of hitting the recommended dose of Vitamin D. I later heard somewhere thatās a hormone too! If thatās true? Helen
How horrible. There are some nasty conditions out there but vertigo has got to be up there with them!It isnāt right to get it there must be a reason. Poor you and people donāt understand. I got it more when the doctor told me to take high dose vitamin D last year for my low vitamin D levels. It started getting a regular occurance instead of maybe a couple of times a year athough I still got regular migraines with aura and nearly always had a headache. I knew I had parathyroid disease as I had low vitamin D levels and a higher than normal calcium levels plus I had a high PTH level when the Doctors finally got round to testing. They always insisted it was because of a low vitamin D Level.Have you had your vitamin D levels checked along with calcium and PTH?I also get very disorientated in the dark is that part of it?Thanks R
Yeah, that happens when your vestibular system is off and youāre visually dependent. Iām getting better, but itās still unsettling. Took forever just getting used to closing my eyes for sleep. My 3 year old has toys all over the floor and Iām always weary of my step in the dark.
Thanks for replying. My vision is not good anyway but the dark makes me even worse. IF MAV is really what I have, amongst other things, I have had this nearly 30 years or more!Regards
No Iāve never had any blood/urine tests for vitamins, calcium or anything. Itās not standardUK practice it seems even when people have oesteoporosis and advised to take calcium and Vitamin D. In fact Iām surprised even when doctors advise people with photophobia to stay indoors, they never suggest taking vitamin D. As ander454 says disorientation in the dark is not uncommon with MAV, itās linked to being overly visually dependent. Your brain is relying on eyesight for balance because other senses are providing conflicting information, or insufficient information and not getting it. The longer one has vestibular disorders the more visually dependent one tends to become. Helen
Hi Helen. I am in the UK and if you ask they will check your vitamin D Levels. If you have vitamin D checked they will check your calcium, its a bone profile. Ask for your PTH levels checked as well. It might be worth it as if you have parathyroid disease if could make things worse. Its a long journey and the consultant said it is ārareā,but I said probably because not many doctors check for it or even know about it. Thanks R.
You are right there. Alot of things are not ārareā - just ārarely diagnosedā I think. MAVās one, sure many others, I was told there was no necessity to check levels. Even the Osteoporosis Clinic said that. They just expect you to swallow buckets of pills assuming you are deficient. Iāve never pursued getting bloods tested. Iāve never thought of thyroid issues. Nobody ever seems interested is tracing MAVās root cause. Itās ever been mentioned to me. I was told itās āmultifactoralā, ātake preventativesā. By timing mine fits perfectly with being hormonal. Helen
I canāt believe the osteoporosis clinic have not checked your bone profile or PTH levels! What part of the country are you in? Hormones definitely play a part.R
