Vestibular migraine

[1567]

Hi,

I am at my wits end, i have had migraine variant balance disorder for 6 years now i have been on propanolol, pizotifen, nortriptyline and now been advised to start candesarten which i am a little reluctant to try. I constantly for the past 6 years have battled vertigo every single day and im exhausted with things not working. Has anyone tried botox injections? Did this work for vestibular migraine? Did it work for a while and then stop working? Where can you get this from, kent sussex area.

Thank you!

[Xandi2]

Gammacore worked really well for me. It's about £350 for 3 months of uses, it's a vagus nerve stimulation. The reason I know this is because the constant rocking almost disappeared, I really didn't notice it apart from the odd vestibular migraine but my migraine pain it really didn't help and I'm self funding Botox and had stopped Gammacore and noticed the rocking came back. What we have is PPPD, The National Migraine Centre told me after seeing another guy for years and trying the same drugs you're on ,- possibly guessing Mr S as he called mine the same name? The drug I was advised by the national migraine centre was Effexor, this is supposed to be extremely effective for what we have. You take it for a period of time till you body recalibrates and then come off it. There's a lady there called Dr Chari who if you can have an appointment with I would really recommend - don't settle for someone else she was the only one who knew what PPPD was and the implications of vestibular migraine. It is private but obviously if you get Effexor the GP can then prescribe it. She also talked about Botox, I'm on my second round. Some improvements to my pain and possibly vestibular.

[1567 in reply to Xandi2]

Hi,

Thank you so much for your reply! Yes i see Dr S have done since the beginning and there is always the promise it will get better with this drug or that drug but mine just continues to worsen.

That’s so helpful thank you i looked to make an appointment with her but she isn’t listed under their doctors currently working?

Good luck with your journey xx

[Xandi2 in reply to 1567]

I also asked my GP to refer me to UCL Neuro-otology department. It was a long wait but the Dr I'm seeing has referred me to vestibular physio and has also mentioned Flunarizine as mentioned by Joyceito. I would try this too as they have so many more resources at their fingertips. She also said if the Botox works they would be able to hopefully fund it. There's also a department at Kings if that suits you better. Best of luck

[Joyceito]

I have vestibular migraine with dizziness and nausea. Flunarizine is the only drug that worked at all for me.

[Ceedee]

in Southampton we have a pain/botox clinic I attend for TMJ . They have suggested I be referred by the gp for migraine , to their clinic , for Botox

[beowulf1234]

I tried botox but unfortuneately made no difference. However, every bodys different. but it was expensive

[1567 in reply to beowulf1234]

Oh that’s unfortunate sorry to hear that, how do you manage the condition?

[Carpe_Diem]

I am so sorry for the delay in my reply computer problems and resetting my password but that's enough of that. I am no expert all I can say is I suffer with essential Tremor and it has been suggested I can take x 3 40mg tablets a day. I have just turned 66 and I HAVE NEVER HAD A HEADACHE IN MY LIFE. MY BALANCE IS appalling just as well I retired as I was totally unable to control a pc mouse. The shakes seem to appear once a week have to use lidded cups like a child. The propanolol definitely stops the shaking. I get PIP not sure what happens next. I live halfway between Bournemouth and Poole where are you based?

I'm afraid my GPps are total crap sorry to hear about your struggles I also haven't driven for about 3 years. Got a daft 3 story house got. Measured up for a. Stairlift but that was a non starter local authority sorted a nice shower room. Please let me know how things go for you, take care bfn Mags

[Musicat]

hi! I can’t answer your question directly, but I also have vestibular migraine. I’ve never tried Botox, but I take topiramate for it which keeps it under control.

Started taking candesartan last summer for high blood pressure and it’s been helpful.