Bilateral Perilymph Fistulas

Chris says, "I was diagnosed with bilateral perilymph fistula's and suffer with daily persistent headaches. I'd like pharmaceutical suggestions for the headaches." Any suggestions?

Comments

NickyD

Hello Chris -

I'm sorry for your situation, but can relate quite well to what your feeling regarding constant headaches.  I as well suffer from this disorder, however, only one that is within my right ear.  Headaches were quite frequent almost each and everday post surgeries.  The fortunate thing for me is that I have a neurologist on my team, as well as an otolyrangologist, that discussed Botox injections for my chronic headache condition in July 2012.  After several months of researching, asking questions and thinking, I finally approved the Botox from a "try and see" approach.....boy am I happy that I did!  My first injections were in November 2012 and I must say that I am impressed and quite pleased about the results as my head pain has almost completely gone away and only the "fullness" remains.  The next dosage for me is in February as the injections are given quarterly for 1 year.

Please let me know if you need further clarifications as the side effects for me have been NOTHING to report!

 

My best, Nick

 

 

Christoph

I tried Botox for about 3 treatments (9 months) and Trigger Point Injections which is shots of Novocain at the base of the skull and top of spine. That seemed to help. I also just tried Topomax which seems to help. A while back I read a Medline article saying that (everyone) with PLF's has daily persistent headaches. Unfortunately that article in on another computer which is in the shop. I think I read it someplace on VEDA. I need to get that computer back Monday if it's fixed, or not. I know I have a copy of that article on the HD.

 

jeni

I am interested in finding out how topomax helps with headaches. Also wanted information about pain that is related to gaze stability ranging from headaches, neck pain , shoulder pain and tension what medications help or other modalities.

i am also interested in help for general pain fromcompensating for balance and gaze stability from vestibular loss. walking and looking at the ground compensation from ataxic gait , fall prevention. Memory issues and solutions. Any help. Damaged from gentamicin ototoxicity.

jk

luluz

Hi, I have bilateral PLF's and daily headaches as well. Im interested in talking to anyone who has PLF's too...

Christoph

Maybe I should go back and try some of the pharmacuticals I've tried previously. I've tried topomax and botox. 

 

My thoughts that there would be a majic bullet were most likely misguided.  A neurologist I saw said that the goal is to decrease the headach as much as possible and it takes a multivers approach to help with the headaches. 

 

The Botox didn't help much, nor did the topomax. 

 

I hate taking pharmacuticals because of the potential side effects. 

 

At this point, being almost bedridden, maybe it would be worth exploring some of these medications again. 

 

Do you know that more people die from pharmacuticals than automobile accidents?

 

Chris