Sunday, May 27, 2012

frustration!

By bimini colt Sunday, June 08, 2008

After being told that I wouldnt go further in the PFO study, I was referred to an arrythmia specialist. He told me he thought I had a form of dysautonomia called "P.O.T.S" which is often comorbid with migraines. He sent me to my Canadian neurologist, who referred me to another specialist to get the test done to DX. I was made to believe the test was june 12, so the neuro told me to get off topamax, since I had to be med free for the test.

In reply to "what med after topamax?" he said " well topamax isnt working, so I guess you don't need meds. " HUH? After confronting him about that, he said " well MAYBE I'll try some meds later on, you never know, but not till after the test results."

SO I wait for Dr Young's opinion before tapering off. His opinion was I should taper off then after the results, start effexor.

 

Late may, I called to see if it was really the test or just a consultation. sure enough, just the consult , and the test would be " 6 months, a year, who knows. you're lucky you are being treated at all"

 

So I'm left with no meds for "6 months or a year?" I'm beyond frustrated. My migraines started getting worse almost immediately when I started going off the topamax, and by the time I was at the lowest dose, I started some seizures again.

 

I feel so betrayed by the Canadian health system, it's just driving me insane to think of the lack of caring, not to mention the fact that the neuro who told me i didnt need preventative meds is one of the top migraine specialists in Quebec! Why is it that I have so much trouble finding a decent Canadian neurologist!?

 

Ugh! I'm just a mess about the whole thing and my migraines are back to daily now, being off topamax. There's only so much a gal can take!

 

All my love and hoping you are having better pain relief than me!

Bim

pain and darkness- a poem
Nancy Harris Bonk, Health Guide
6/ 9/08 9:10am

Sorry to hear about the continued issues with this Bim. I think you may have it the nail on the head when you said how come you couldn't find a "decent Candian neurologist".  They are neurologists, not Migraine/headache specialists. You have a good Migraine specialist - in the US - not one in Canada. That's part of the problem, right?

 

It stinks any way you look at it...hang in there.

Nancy

6/ 9/08 9:19am

Dear Nancy,

thanks for the support. Just woke up and saw this:-) But the funny thing is, my canadian Neurologist happens to be one of the top migraine specialists  in my province!Yell And those kind of comments are what I get from the "best migraine specialist" in Quebec? It's time for a new migraine specialist, but its discouraging to think he is considered the best!

 

love and hugs,

bim

Nancy Harris Bonk, Health Guide
6/ 9/08 9:00pm

Remember all Migraine specialists are not created equal!!

6/ 9/08 1:17pm

I'm sorry that it still seems to be a round and round battle for you. I hope the Effexor becomes some what reliable with diminishing your migraines.

 

I hope you start seeing results on it soon!

 

Hang in there!

 

 

10/10/11 2:09am

Interesting Ihave been having the same problem for years. i have dysautonomia (POTS) www.dinet.org can give you suggestions to take salt tablets drink gatorade or vitamin water. Its not a fun condition at all and I would also try to go to a cardiologist to have tilt table testing done. The migraines were awful... I found that (xanax, klonopin) made them worse. I'm sure this dosen't make alot of sense other than experience. My Neurologist said the same thing to me in the US and nothing helped my miagraines. I learned I was having dehydration headaches due to POTS and my body dosen't retain fluids and my blood pressure drops to low when Im in certain positions.  Need salt to help retain fluids.

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By bimini colt— Last Modified: 10/10/11, First Published: 06/08/08