Botox

Hi,
Just wondering if any of you have used botox to treat our MAV? If so where? I’ve been reading a facebook MAV group and some of them are trialling it but I haven’t worked out where they are getting the botox. Could it help our neck/shoulder pain? Mine is so chronic at the moment. I’ve just titrated up to 35mg of amitriptyline and no luck with it touching the constant pain. I feel if I could get a handle on it I’d feel almost ‘normal’ except for the tiredness but that I can cope with. The dizziness, nausea has gone which is awesome. I’ve been trying physio but it really only relieves it there and then, the next day I’m back to square one. Deep heat is good, pain meds don’t do a thing. Hate being in constant pain.
Thanks in advance
Jan xxx

Hi Jan,
Gosh it is actually good to hear from someone who is in pain all the time like I am with pain in the neck shoulder all the time. Sorry to say that.
Sometimes I feel like such a freak! :?

So to answer your question. I have had both Botox and Lidocaine/steroid injections. Both of these have been to my neck/shoulder/occiput. I have had no relief from the pain. I was supposed to have another Botox injection last week and canceled it. This is just my experience and hopefully others will jump into the conversation. Right now I am also in physical therapy and getting some relief from the exercises and being aware of my posture at ALL times. This is helping. I have forward head posture so I am building the muscles of the back of my neck and also opening up my chest. On a complete aside, my son was in the military and served in both the Iraq and Afghanistan wars, I feel as though I guarded my heart by pulling my head down and pulling my shoulders in and rounding my shoulders. Ten years of this along with so much other stress and other triggers has caused the unrelenting neck shoulder pain. I have just been given 8 visits by my insurance co. to see a myofasical specialist and am hoping for some real improvement.

Lisa

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Hi Lisa,
Stress does amazing things to our bodies doesn’t it. I’ve had two major stress issues for 4 years, diagnoised with PTS last year and it feels like I’m now suffering the effects of so much stress floating around in my body.

I’m a bit disappointed no one else commented on the botox, I’m unsure whether to look into it seriously or not. Sorry it didn’t work for you, and good luck with your appointments.

Cheer
Jan

Hi Jan!

I am new to the board and just read your post on whether Botox works for MAVs. I was diagnosed with MAVs in 2007 and have been struggling for years with the many crazy symptoms. One of my worst symptoms was chronic Migraine headaches. I would typically get 5 to 10 bad headache episodes a week.

In 2010 I decided to try Botox. I went to Dr. Alan Herskowitz in Miami. He is a neurologist who specializes in Botox for Migraines. I had the Botox procedure done three times over a two year period (every 6 months). Despite some of what I have been reading from doctors and patients about the lack of effectiveness of Botox for Migraines, all that I can say is that it worked exceptionally for me. I now get migraines once or twice a month. Not only is the frequency down significantly but the severity is also reduced significantly. I am a HUGE believer in Botox as it really did work for me. I had tried a number of the MAV drugs (Effexor, Zoloft, Topamax) with varying degrees of success. For me the greatest improvement in my life has come from the Botox.

Please keep in mind, however, that it only reduces the headache symptoms. I still get many of the other MAV symptoms (dizziness, tiredness etc.). Perhaps these have been reduced because I experience fewer Migraines but I am not sure.

if you have any other questions, please do not hesitate to ask.

Good Luck!

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Thanks for you input and so pleased this treatment is working for you. I’m currently under the care of another migraine specialist neurologist in Melbourne, Australia and once I get my meds to the desired level, he has also suggested trialling some botox treatments.

Good luck with it all,
Warm regards
Jan