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Migraine variant balance disorder

Hi, my name is Jo and this is my first posting. I was very fortunate to see a neuro otologist privately last
Friday who has given me this diagnosis of Migraine Variant Balance Disorder. He explained about blood vessels in bran stem going into spasm and has advised me to try the 6 c’s diet and also medication called Pizotifen.
My symptoms started very suddenly 2 months ago when I woke up to find that I couldn’t balance and everything was swimming around and I was throwing up because of the dizziness. I called out my GP who diagnosed labyrinthitis and prescribed stemetil. For 9 days I was confined to bed as every time I got up I was swaying around and felt very unsteady.
For the next 3 weeks I had fullness in ears, a cotton wool head, ear and neck pain, and tinnitus. My head felt like it was too heavy for my neck and the feeling in my head was like a tinny sensation (very hard to describe), like a reverberating sensation. I returned to work and for a further 3 weeks the symptoms gradually got easier. we had a visiting osteopath come to our work for freebie session and I had some work done on my neck and also acupuncture. I felt a lot better the next day and had a my first weekend where I felt relatively normal! On my 4th week back at work I caught a sickness bug and was off yet again for 3 days, on the 4th day I lay down for a nap, and woke up to exactly the same symptoms as first mentioned. this scared me and I called my GP who said it was probably the labyrinthitis back again, and because I had caught the sickness bug, it had triggered it off again. I was very depressed at the the thought of going through weeks of recovery, and became very depressed and anxious about this condition. I am my own worst enemy when I’ll and trawl the Internet looking for answers, sometimes reading things that scare the life out of me when you read of people suffering for months or even years, and I become convinced that this will be me. I came across the Medway Hospital in Kent and read about Dr
Surethiyan, who is a specialist in balance disorders and was very fortunate to get an appointment last Friday and he straight away dismissed the labyrinthitis diagnosis. what I am finding hard to take on board that all these awful symptoms in my head and ears and the dizziness and unsteadiness is a form of migraine, as Although I do get occasional headaches (in particular what I call neck headaches), I don’t get the typical migraine where you have the flashing lights, aurora etc. I did tell him that for years that I thought I had sinus headaches which went on for weeks, and also had tension headaches, where I literally walked around with a baseball cap or towel wrapped round my head as it was the only thing that relieved the pressure round my head. However, I had not had this for for a long time. I’ve always had problems with tension in my neck and usually have a massage to relieve it, but like most people when you feel ok, you tend to discontinue things.

I’m now going into my 3rd week of this second bout and am at the stage where the dizziness has eased off, and just got the fullness in ears, as though they want to pop and pressure, but it’s my head that causes me the most discomfort. My vision also seems a bit worse and it’s a very strange sensation when I am walking around for a period of time. I just have I lay down and he pressure sensation decreases. I am struggling with this diagnosis of migraine variant balance disorder, and worrying how long it will last. I know from reading posts on here that I am relatively mild compared to some people, but it’s still very scary. I also get tingling sensations in my body and numbing sensations on my head. (I used to get these symptoms when I had all the sinus problems, but am now wondering whether this was just another variant of migraine). If anyone after reading this post can relate to my symptoms and I am a MAV sufferer (is Migraine variant
Balance disorder a form of MAV? ).
I feel so low in mood because of this and feel that I am just waiting to feel normal again.
I have just started a new job and for once I have very little stress in my role, but have spent more time off sick than at work. I do have certificates to cover my absence , but I do worry that they wont keep me on because of so much time off sick and I am in my provationery period. I am normally a happy go lucky person, who loves spending time with my family and friends and my grandchildren. I am 52 and female. I suppose I am looking for some reassurance that the diagnosis from the consultant is correct as I do tend to question everything, ado found it quite hard to take in that it wasn’t labyrinths, yet the symptoms mimic that condition. Any comments great fully appreciated.

HI Jo Bee and Welcome! I am personally not aware of the disorder diagnosis you were given, but it sure sounds a lot to me like MAV. This will be a very helpful website to you and make sure you try the diet and identify your triggers which could be horomone related with your age??

I also don’t get the typical migraine where you see flashing lights or aura’s. I also personally don’t get tingling but I think others here do. Are you going to try any medications?

Try not to stress as this can make things worse and know you have a great support group here!

There are some docs that are now theorizing that a lot of diagnosed “sinus problems” are actually migraines.

My migraines manifest with no pain but start with tingling in my head (specifically the top of my head) and then progress into a feeling that my head or brain is numb. I’m used to it now but it was definitly disconcerting when it first happened!

Hi and welcome to our club (which we always hate to have new members of)! :smiley:

My neurotologist used the term “migraine associated dizziness” when he diagnosed me, and then he sent me to a neurologist for treatment - the neurologist used the term “migraine variant” but I think we’re all talking about the same thing here! And I was just about your age when the dizziness hit me - fluctuating hormones can bring it on. I also used to get what I THOUGHT were “sinus” headaches in my teen and earlier adult years - I know now that those were in fact migraine headaches. Most people don’t get aura with migraine (flashing lights or other visual weirdness) - the kind without aura is called common migraine because it’s more prevalent than migraine with aura.

I’m not dizzy any more; medication took care of it. I hope that gives YOU some hope!

Hi jo
I too see the same Dr as you and am on the same medication, take heart, it works. Dr S really knows his stuff, follow the diet STRICTLY , do everything he says and you will get there. I am on pizotifen and another med called gabapentin,I’m back at work full time and look after my little boy. I’m not 100 percent but I’m well on the way
We are here for you
Susie

susy,

thanks for your response it is very encouraging. I am missing my cheese and crisps!! Have been having the decaf tea and coffee and cut down a lot, as realised I was having up to 6 coffees a day at work and probably 3 cups of tea, which I know is way too much. Dr S is writing to my GP to refer me to his NHS list, so I know I will have a wait of up to 11 weeks before zi see him again, but if my symptoms get worse, then will go back privately to see him (my bank balance is going down rapidly!!)

Glad to hear you are on the mend, and don’t know how you coped with looking after a young child as well. were your symptoms similar to mine?

Jo

HI JO
I spent 2yrs with a inner ear damage diagnosis before i went to see Dr S and got a MAV diagnosis - still not convinced but feeling better so going to go with it as nothing else to go on! Been on the diet for over 2 months and just started taking some meds. At a point now where i will do anything to get rid of this. Try and put your faith in to Dr S, its a very hard diagnosis to understand i find but as i say, have nothing else to go on. Have been off balance every day since january this year so really want to improve, and seem to be slowly at the mo.

Hi jo
Yes my symptoms were similar, I also had panic attacks that were so bad I thought I was having a heart attack.
You can have plain walkers crisps, they’ve got no msg in. How long have you been on the pizotifen? What dose are you on?
Susie

Jo - (Welcome to the group!) Just a quick note… Watch out for the decaf coffee and tea if you’re really trying to stick to the migraine diet, as they really do have a smidgen of caffeine in them. (I think it’s something like 3%… can’t remember for sure, though.)

(I’d kill for a great big iced coffee drink right now, with a great big blob of whipped cream on top! Might have to break the decaf rule myself this weekend… Mmmmm… :wink: )

Susie, I tried to private message you, but for some reason couldn’t do it, so sorry, posting on here and hope you see it. I have bee on he Pizotifen for 10 days, and built up steadily to now taking 0.5mg 3 x day. Can’t say I am noticing a drastic did fence at the moment, altho my dizziness is not constant like if was aim the first 2 weeks. I feel as each week goes by, symptoms start to face, and am just hoping and praying that it goes like it did last time which took about 6 weeks, then I go a sickness big from work and on the fourth day I just woke up from a nap, and if was there. falling to one side, throwing up, vertigo sensation and couldn’t stand up straight for e first week as it made me so sick. No headache, just very tender in my neck (I call them neck headaches). Its the ear fullness, tinny head and general head fog that drives me insane. It has brought on tinnitus, but that does not really bother me. My faces feels stiff and full like sinus blocked. Looking back over fh years of my life, I suffered terribly with sinus trouble, but every ct scan I had nothing showed up and sinuses were clear. I now feel that his was a type of migraine, nd I’ve probably had this since I was 15. I used to get periods where I thought my sinus were the problem, but in hindsight I prow oh didn’t have sinus. I all used to wear a baseball cap or wrap a work tightly round my head to ease other pressure and light headedness. As I suffered fom really bad post natal depressions, and even when’s he depression had lifted I have a intense band round my headd and my neck plays ups.dd I had years and years of these symptoms and no one got to the bottoms of it.
I dove my car today and felt ok but heady.
I hope to be back at work next week, and dreading that something will start up again, but I realise I cant stop worrying about when or where it may start sgain,

Hopefully speak again soon

Jo xx’’

D

Hi jo
Hope you’re feeling a bit better. The pizotifen does tend to work gradually, I think i was on it several months before I felt a lot better, but if you’re symptoms are fading, that is excellent. As for returning to work can you do a phased return? I did that and it really helped me.
When do you see Dr S again? He will review you regularly and add in another medication if needed, I’ve found the gabapentin to be amazing.
Anyway take care, contact me anytime, we can phone if you want to chat, I know how isolating this thing can be
Susie :smiley: x

Hi susie and fellow sufferers

I have tried many times over the last few days to private message you but with no luck. So sorry,but I’m on this thread again.

I feel as though I am going backwards. Had one relatively good day, but been awful the last 2 and am racking my brains as to what I did or ate that has made it worse. been very tearful and anxious as to how long I’m going to feel like this. My head feels to full of foggy.dizzy twanging and my neck hurts from trying to support it and also I seem to get these “neck headaches” very hard to explain. I can only describe the sensations in my head as if you we’re eating a sweet with a bit of foil on and it gets into a filling!! :? I have got a party to go to tomo night and dreading it, and also i am due to go back o work next Tuesday, and I don’t feel ready headwise to do that, but so worried as to what they will say. Sometimes I think, if I go back will take my mind off it, but I then feel worried that It won’t, and will have to go off sick again. Am going to my GP on Monday and see how I feel then before I make decision to take more time off. Last time I gradually got better after 3 weeks off, then went back to work for month, and then it hit me again a month ago, and this is how I have been every since.

I don’t know how long I will have to wait to See Dr S again, as my GP hasn’t received his referral yet, but if I don’t get an appt in the next 6 weeks will go private again. can’t say I am feeling any benefit from the Pizotifen and this is first week on 3 x daily at 0.5mg. I know from past medications that I take that I am one of these people that drugs seems to take a few weeks to get into my system. Every morning I wake up thinking that perhaps today will be when I feel more like my old self, and it’s so frustrating and depressing when as the day goes on you feel worse. My partner is not as supportive as I wold like to be and he finds it hard with me not being my usual self, so sometimes I feel extra pressure to “put on a brave face” , but inside I just want to scream at him for not asking me how I am. I know he is just waiting for me to say I feel bit better etc, but he must get fed up with me crying and constantly saying how I feel. Its hard on he partners as well as the Sufferer of this awful condition.

anyway, I will sign off now.

Jo x

Hi Jo
I have sent you a private message
Susie xxx

Hi Susie , I have just found this forum ( my first time on one ) and i came across yours when typing in Migraine Variant ,
Last week i went to see Dr Surrenthiran , what a lovely man :slight_smile: he to diagnosed me with Migraine Variant and started me on the Pizotifen the 6c’s and the eye exercises sitting down to start with, its just that i do not know of anyone who has gone on this journey of recovery so hope you dont mind me contacting you, i do feel positive for the first time about " all this " so i would love to ask you a couple of things if you dont mind.
Thank you
Jane :smiley:

Hi all, I had my first meeting with Dr.S this afternoon who also diagnosed me with migraine variant balance disorder, I have just typed this in on google and found this forum, cannot believe that there are others who have been diagnosed with the same in the Medway area. Dr has started me on the 6Cs plan, and I have to go back and see him again in 3 months with the possibility of being prescribed drugs if the diet doesnt work. I am a little concerned as I am vegetarian and I will struggle to give up cheese and eggs, but have been told I can eat goats cheese so will give that a go. I am pleased to have a diagnosis for how I have been feeling, my mum has been really ill (so I dont think the stress has helped matters) but got the impression from my family when I described how everything felt like it was spinning as though I was on a boat on a rough sea, that I was just making it up, hopefully they will now appreciate that what I have is a medical condition and will help me work at the plan so that I start to feel better soon.

Hi, i have just seen your post from a little while ago, i to was given the diagnoses of migraine variant by Dr Surenthiran in sepetember this year, i was wondering how you are getting on with the Pizotifen ? i saw him for my second appt this last week, he is sure a lovely man and very kind to :-).
Jane :slight_smile:

— Begin quote from "Jo bee"

Hi, my name is Jo and this is my first posting. I was very fortunate to see a neuro otologist privately last
Friday who has given me this diagnosis of Migraine Variant Balance Disorder. He explained about blood vessels in bran stem going into spasm and has advised me to try the 6 c’s diet and also medication called Pizotifen.
My symptoms started very suddenly 2 months ago when I woke up to find that I couldn’t balance and everything was swimming around and I was throwing up because of the dizziness. I called out my GP who diagnosed labyrinthitis and prescribed stemetil. For 9 days I was confined to bed as every time I got up I was swaying around and felt very unsteady.
For the next 3 weeks I had fullness in ears, a cotton wool head, ear and neck pain, and tinnitus. My head felt like it was too heavy for my neck and the feeling in my head was like a tinny sensation (very hard to describe), like a reverberating sensation. I returned to work and for a further 3 weeks the symptoms gradually got easier. we had a visiting osteopath come to our work for freebie session and I had some work done on my neck and also acupuncture. I felt a lot better the next day and had a my first weekend where I felt relatively normal! On my 4th week back at work I caught a sickness bug and was off yet again for 3 days, on the 4th day I lay down for a nap, and woke up to exactly the same symptoms as first mentioned. this scared me and I called my GP who said it was probably the labyrinthitis back again, and because I had caught the sickness bug, it had triggered it off again. I was very depressed at the the thought of going through weeks of recovery, and became very depressed and anxious about this condition. I am my own worst enemy when I’ll and trawl the Internet looking for answers, sometimes reading things that scare the life out of me when you read of people suffering for months or even years, and I become convinced that this will be me. I came across the Medway Hospital in Kent and read about Dr
Surethiyan, who is a specialist in balance disorders and was very fortunate to get an appointment last Friday and he straight away dismissed the labyrinthitis diagnosis. what I am finding hard to take on board that all these awful symptoms in my head and ears and the dizziness and unsteadiness is a form of migraine, as Although I do get occasional headaches (in particular what I call neck headaches), I don’t get the typical migraine where you have the flashing lights, aurora etc. I did tell him that for years that I thought I had sinus headaches which went on for weeks, and also had tension headaches, where I literally walked around with a baseball cap or towel wrapped round my head as it was the only thing that relieved the pressure round my head. However, I had not had this for for a long time. I’ve always had problems with tension in my neck and usually have a massage to relieve it, but like most people when you feel ok, you tend to discontinue things.

I’m now going into my 3rd week of this second bout and am at the stage where the dizziness has eased off, and just got the fullness in ears, as though they want to pop and pressure, but it’s my head that causes me the most discomfort. My vision also seems a bit worse and it’s a very strange sensation when I am walking around for a period of time. I just have I lay down and he pressure sensation decreases. I am struggling with this diagnosis of migraine variant balance disorder, and worrying how long it will last. I know from reading posts on here that I am relatively mild compared to some people, but it’s still very scary. I also get tingling sensations in my body and numbing sensations on my head. (I used to get these symptoms when I had all the sinus problems, but am now wondering whether this was just another variant of migraine). If anyone after reading this post can relate to my symptoms and I am a MAV sufferer (is Migraine variant
Balance disorder a form of MAV? ).
I feel so low in mood because of this and feel that I am just waiting to feel normal again.
I have just started a new job and for once I have very little stress in my role, but have spent more time off sick than at work. I do have certificates to cover my absence , but I do worry that they wont keep me on because of so much time off sick and I am in my provationery period. I am normally a happy go lucky person, who loves spending time with my family and friends and my grandchildren. I am 52 and female. I suppose I am looking for some reassurance that the diagnosis from the consultant is correct as I do tend to question everything, ado found it quite hard to take in that it wasn’t labyrinths, yet the symptoms mimic that condition. Any comments great fully appreciated.

— End quote

Hiya Jo Bee

I’m sorry you have had to post because of having this horrible illness, it’s debilitating and invisible. I have had this for 3 years now and was also told i had labyrinthitis in the beginning but since seeing ENT specialists they think i have migraine/MAV.
I am currently pregnant but intend to see a good neurologist after the babies are born for some advise, you are lucky to have seen Dr S so early on and hopefully this will mean that you get some treatment quicker.
I follow the diet from ‘Heal your Headache’ by David Buchholz which includes the 6 c’s but also goes into a bit more detail with things that can be triggers, it might be worth you taking a read, it’s very informative about migraine.

You CAN have crisps is you choose plain/ready salted ones that just contain potatoes, oil and salt :slight_smile: Tortilla chips that are just corn, oil and salt are ok too. The diet is very hard to stick to to begin with but after a few months it can become a way of life and some people have very good results with it. My biggest no-nos seem to be caffeine, nuts, cheese, sweetners and msg. Soon you learn to adapt recipes and find things that you can have safely.

I hope you get more relief soon xx

I’m bumping this thread up especially for ‘ladies of a Certain Age’. I just stumbled on it yesterday for the first time and, although it’s common time for MAV issues to fully blossom, consultants waiting rooms being full of menopausal women, this thread from 2012 really does include a glut of them. Reassuringly, I think, several are reporting being seen and treated and no further posts appear. I can closely relate to many of their histories. Amazing how many people still are getting misdiagnosed with, in most of these incidents, labyrinthitis. I suffered under the ‘BPPV’ banner. Helen