Botox Article in NY Times today (link)

[Mei Mei]

http://query.nytimes.com/gst/fullpage.html?res=9E05E5D71E3CF931A3575AC0A9669D8B63&ref=botox_drug

Mei Mei

[Captain Deb]

The makers of Topomax, originally an anti-seizure med used to treat epilepsy may have gone through the same hoopla.  It was not originally developed as an anti-migraine med at all.  Drug companies that manufacture triptans and other migraine meds surely don't want another med like Botox around that, with a few quick shots in the head, would eliminate the need for their expensive products, either!

Capt Deb

[Mei Mei]

Yes, and Topamax surely worked for me in prevention of my migraines for years.   Incidentally, my neurologist is weaning me from Topamax so now I am going through withdrawal symptoms.   I had urology problems last month and he said Topamax causes kidney stones.

Mei Mei

[Captain Deb]

Topamax causes all kinds of weird crap! I ended up with a 6 cm fluid filled cyst on my liver.  I went to have it aspirated (drained) CT guided, even, and ended up with a punctured lung which put me in the hospital for 5 days with a chest tube (talk about painful) and then I had nerve damage from the chest tube, which still bothers me.  The problem was that I should have been closely monitored with bloodwork every 6 months which would have included a liver function test, a bone density test at least once a year (Topamax blocks calcium absorption) and told to take extra calcium supplements, as I now have osteoporosis.

What I have learned from all this is do tons of research on every med you get put on!  Thanks for the Botox article.

Capt Deb

[Captain Deb]

As of now, Allergan has two varieties of Botox it markets--Botox Cosmetic, and Botox . When My neurologist first suggested trying Botox on my headaches in 2003, it was definitely an off label use which is why my insurance co denied coverage of it.  With so many new studies since then and so much success treating migraine and cluster headaches, there is simply no excuse for an insurance company to turn down coverage other than that is how insurance companies turn a profit--by denying as much coverage as possible to their customers! (You do not want to get me started on THAT one!!)

Capt Deb

[Mei Mei]

And me too, Deb.  I could go on and on.    I had blood in the urine and a UTI two months ago.  The UTI treated and OK but still blood in the urine so had a cystoscopy and it showed scarring or something where the bladder connects to the kidney so I was sent to get a CT scan and came back and he said I was OK and that it was something old.   I got away this time and I'm lucky.  Glad I'm off Topamax.   I must have taken it for ten years, but my calcium and bone density is OK thank goodness.

You've been through alot.   Gotta CUT BACK!
Hugs,
Mei Mei

[Captain Deb]

Being that you had headaches before your surgery, you should have been counselled that they may intensify after surgery, as I should have been!  I learned that one at the past ANA symposium!

Capt Deb

[Mei Mei]

Hi!   I really didn't have headaches and pain for the past ten years.   The myofascial pain (fibromyalgia) was controlled by Cymbalta and Topamax.   It really helped.   Didn't have a headache until right after surgery and since then!
Mei Mei