The Vestibular Migraine Community
Please read our welcome post and user support wiki!

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