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Recently diagnosed with migraine variant balance disorder


#1

I have been off sick since April 2018 with this - luckily I had read about Dr. Surenthiran via this website in an article by Jem, and he was also recommended to me by my brother-in-law as he had helped his wife to recover from a ‘destroyed’ labyrinth which was a result of having meningitis.
I saw Dr. S in London as a private patient and it was money well spent. My follow up appointment at his balance clinic at Medway hospital in Gillingham will be covered by the NHS. I am improving gradually since taking Pizotifen tablets. I still have days where I feel unbalanced and my head feels as if something is pressing down on it and my ears feel ‘full’ and are ringing with tinnitus but I feel much much better than I did before I saw Dr. S.
Jem’s article from Nov 2012 " Appointment with Dr. Surenthiran" describes to a letter what Dr. S told me at during my consultation which is that my head has been tipped over the edge as it is overloaded and is on flight or fight mode. My ears, eyes and brain are no longer working together hence feeling unbalanced and dizzy. If I have to stand with my eyes closed I start to list to the right and can’t stand up straight. My father has migraines and Dr S said that it is an hereditary complaint, and I think this MVB has been building up for a few years although interestingly I don’t get many headaches, however, as my head feels odd maybe that is a different type of headache? I have been put on the migraine elimination diet and that with the Pizotifen hope that I continue to improve - the follow up appointment is on 24th July so I will report back after that!


#2

Jan,

Usually one of us comes along and responds. Sorry we haven’t. Those of us in the USA are doing the 4th of July vacation thing. I’m glad you got to see Dr. S. We’ve heard great things about him. I’m glad you’re doing better. I hope you keep improving. Please do come back after the 24th and give us a progress report.

You are welcome here and we’re glad to have you.

Emily


#3

Stick to the diet and Pizotifen. @gidlabu had great success on that drug.


#4

Hi Jan,

I also rarely ever got headaches before all of this happened to me. I wouldn’t have described my brain as a migraine brain. All I have now is what I’d call head pressure or maybe sinus pressure. Totally different than a regular headache. Like you, I also believe what I have was building up for years, where I’d get mentally fatigued with minor head pressure and muscles pulsing around my nose but not really understanding or realizing that this was potentially a neurological thing. In my case, an unexpected reaction to a nootropic drug kicked off the whole thing.

Migraine elimination diet is a must to try. Haven’t tried Pizotifen, I’m on Verapamil. Also look into the supplements.

Best of luck, keep us posted!

Erik


#5

Hi

As @flutters said welcome. I read yr script and was very impressed. You seem to have it sorted. I couldn’t see you were looking for additional info. You seem to have it sussed. Amazing really. Most people take a while to get their heads around it which is very understandable and I was much the same when I was first diagnosed myself. In fact some days I still am.

You were lucky to have access to Dr S. UK wise, he’s pretty much top of the tree. All yr symptoms sound like MAV to me, not that I would imagine anybody would doubt one of Dr S’s diagnosis least of all me. I’m no medic. It’s common not to experience headaches with this. I’ve had it for years and don’t get them. That’s probably one reason it goes undiagnosed by local GPs. The migraine connection isn’t made. That’s why I said you were lucky to have access to Dr S.

Be interested to read yr follow up. Once again, welcome.


#6

Thank you Emily - I will certainly stay in touch. I am really grateful that this community exists. I hope you had a great July 4th!

Jan


#7

Thank you GetBetter - that is good to hear.
Jan


#8

Hi Erik
Thank you for your reply. Head pressure is exactly what I am getting - today it is on the top of my head but other days at the back. My ears are also ringing. Dr S told me to also take Migraleve, but I really don’t know when to take it - I don’t want to get hooked on it!
I will definitely keep everyone posted!

Jan


#9

Hi Onandon - thank you for your reply. I was definitely lucky to get to Dr S so quickly - it helped that I found an article on this forum and that my sister-in-law had sen him for another balance issue. My GP said ‘well done for finding him’! I guess it is difficult for our GP’s to pick up exactly what this is from the symptoms. I must admit I am still trying to come to terms with this.
Will keep everyone posted re how I get on.
Jan


#10

Hi

I see Dr S and I started on pizotifen and am now on pizotifen + gabapentin. I’m doing pretty well now, after nearly a year on the meds, although not back to 100% yet, i am usually in the 70%-85% area.

i had, and still sometimes have, all kinds of weird head sensations once the main dizziness stopped. they are just… weird. fuzzy, bouncy, heavy head sensations. sometimes with actual headache or other symptoms, sometimes just with a smidgen of tinnitus.

anyway - i seem to keep gradually improving, which is great :smile:


#11

Hi
That is very encouraging - thank you. Today is the second day in a row that I feel almost normal, although I have almost forgotten what normal is. I seem to have one good day followed by 3-4 not so good days, so 2 good in a row is an improvement!
I am hoping that the pizotifen will keep working so that I can go back to work in September. I am also keen to start driving again - are you able to do that now?
Did you follow Dr.S’ elimination diet too? I am finding that quite difficult as MSG seems to be in lots of things and not many soft drinks are free from lemon!
Many thanks.
Jan.


#12

Hi
Just wondering if you have also experienced a crawling sensation on your head? This seems to be a new thing which started yesterday. It seems to start from my neck - today on the left-hand side - and then spreads over my skull. It also feels a bit like my hairs are standing on end. I forgot to mention it to Dr S who I saw again yesterday, doh! Also are you able to drive and did you have to contact the DVLA? :grinning:


#13

OK so a progress report as promised: @gidlabu, @Onandon03, @ander454, @flutters, @GetBetter

There isn’t much to say really, it was a lightening visit as I am now seeing Dr S via the NHS, but he seemed quite pleased by my progress. I have to stay on the same dosage of Pizotifen for another 4-6 weeks and if no further progress need to increase it to 1:1:2 , then after another 4-6 weeks if no additional progress increase to 1: 1: 3.
I have to stay on the elimination diet for at least a year :slightly_frowning_face: - in my naivety I thought it would be for about 3 months! I have been eating a lot of nuts and using almond milk, but having read that nuts and almond milk are triggers for some people I asked Dr S if I should avoid them. He said that a few nuts would be OK and no problem with almond milk -I would be interested to hear other people’s experiences with these.
I can stay off work for another month - quite a relief as some days it is difficult to concentrate and take in tricky concepts which most jobs require!
I would be interested to hear if anyone is able to drive at the moment . Dr S said I needed to inform the DVLA, but I am worried that they will take my Licence away as I need my car for work - when I eventually get back to it!
I am still up and down - have had 2 not so good days this week, but am blaming the weather and being anxious about the follow up visit. I also thought I might have to do some of the tests I have read about but all unfounded fears as Dr S has decided they are not necessary at the moment.
Phew!:disappointed_relieved:
Apologies if I am not posting things in the right place - I am still trying to get the hang of how best to use it. It is a fab site - very easy to navigate and find things. Such a brilliant support network.
Thank you.


#14

Surprised to learn that. I would be interested to know what a nutritionalist would say to that one. I’m not medical and don’t do the diet. My consultant said there was no need and I had to ask her. She only mentioned eating a well balanced diet. I know lots have had excellent results with the diet and some experts insist on it. I’d be concerned as to what it might be lacking, ie no dairy. Calcium very important. Need to guard against osteoporosis in later life.

I avoid nuts because I think they -and particularly almonds - might be a trigger for me. Glad you’ve another month to rest the system. Think it gives the drugs more of a fighting chance.

If you read the DVLA instructions that is correct. Apparently you should also advise your insurers. A friend of mine who had labs. Did all this. DVLA took away her licence initially for 3 months then she could reapply. You don’t have to take another test. Supposedly it’s done on driver honesty but if you think about that dustbin lorry driver in Scotland who killed 6 people just before Christmas a couple of years back who had been driving professionally all his life knowing he had regular dizziness/blackouts which were undiagnosed and who lied by omission to get the job, it makes you wonder.


#15

Me too! I am also slightly concerned about vitamin deficiency - I forgot to ask Dr S about the merits of taking supplements. Maybe I should just check this with my GP. I am really trying hard not too eat too many nuts and will try rice and goats milk instead of almond milk to see if that makes any difference. It is really difficult to decide if certain foods are the culprits when all you have to go on is head and ear pressure and tinnitus!
I must admit apart from doing the diet for MAV/MVBD reasons, I am feeling much better in other ways. I have IBD and that has improved dramatically so I probably should have been giving up red wine etc for years. I have always had an issue with milk right from when I was a child and have never had much milk. I do miss cheese :disappointed_relieved:.
I have had a new symptom since yesterday - again forgot to mention it to Dr S - creeping head - it only lasts a minute or two, but I don’t like it much. feel as if my head has goosebumps and my hair is standing up, which of course it isn’t. A bit like when you are cold and your arm hair stands up! Maybe I should stop the nuts!
Thanks for the advice about the DVLA - always best to do the right thing. Dr S said I could drive on a good day but to inform the DVLA. I tend to know straight away if it is going to be a wobbly one!


#16

Good updates! For me driving is the only activity where I feel zero dizziness. I’ve thought about just driving Uber for a while, but decided against it because I would just be avoiding the recovery process… I’m walking a lot now, its tough, but since my head pressure is mostly gone I think its safe for me. Mostly I just feel a bit whoozy/sick.

I have had a bit of the head crawling sensations myself. I specifically get it when I get chased by a bee, like I’m anticipating the sting. I wonder if it is related to a stress hormone and muscle contractions in the head, have no idea, but it is weird.

I happen to be in the strict diet camp. Almonds technically fall into the tyramine camp and so I avoid all nuts and seeds. A few nuts or seeds is not a big deal, but I was having a couple handfuls between meals and I “think” could tell that it was increasing the head pressure over the duration of a week. I say “think” because there is no hard proof the diet really helps. On average, if I am doing the strict migraine (low tyramine only) diet, I feel better. It takes a few days to start to feel it and a few weeks to really feel better. I’ve tested it many times and although I still think it could be placebo, I don’t care. It’s a perfectly fine and healthy way to eat anyways. I basically live on buckwheat/rice/bread, fresh apples/pears/cherries, cooked greens, raw carrots/salads, fresh chicken/pork, and organic milk. That’s mostly it. Keeps grocery shopping simple. Should cover all the major vitamins/minerals. You can get a good amount of calcium from cooked greens actually, don’t need dairy.

But if diet doesn’t seem to modulate any symptoms for you, than don’t stress about it. It’s not a proven thing, just something that works for some people. I hope someday I won’t need to be on a diet at all (-:


#17

Thank you! I am trying hard with the diet so will try to give up the nuts - I eat a lot of seeds too so perhaps they must go as well. It’s definitely worth a try. My husband thinks I am taking it too far, but I really want to crack this asap. You have encouraged me to get back to driving asap too - I am going stir crazy and hate relying on lifts. I like a simple diet - I like the sound of the food in your list of tried and tested. My husband loves lots of sauces and gravies so I shall have to adapt our recipes to suit us both! Avoiding MSG is a big issue - not sure I have cracked it yet.
I am so glad I am not the only one to experience the creeping head feeling - it is very reassuring. I was wondering if it was the heat, plus I seem to be having lots of ear trouble today.
Onward and upward! :sunglasses:


#18

Yes, my wife and Naturopath believe I’ve gone too far. On trips I pack a full chest cooler full of “my food”. I think it just correlates with suffering, if anything helps, do it. If they were in our shoes I’m sure they would act obsessively about many things as well.


#19

I’ve been accused of the same. Just yesterday my husband unpacked my Thrive.com box and said, I stored your ‘hippy food’ in the dishwasher (which is broken). I follow a ketogenic diet to deal with MAV. I guess high end pork rinds, bone broth and cans of fish can be called hippy food.


#20

Yes, I can drive fine now. I started driving when I started feeling about 50% better - short distances. Sometimes it was hard. But now I can drive 4 hours + no problem.
You only need to tell DVLA if you have a medical condition that gives you sudden, unexpected incapacity (like BPPV). You don’t need to tell them if you are just predictably unwell. You wouldn’t need to tell them if you had another condition or disease - the important thing is only to drive if you are able to do so safely.