Tapering off meds-again

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Tapering off meds-again

Post  sailingmuffin on Tue Nov 29, 2011 8:22 am

Hi All,

As many of you know, I spent the week before thanksgiving at the Cleveland Clinic to get another opinion regarding the fainting. They did several tests- a tilt table, hemodynamics (blood volume) and another test to check for POTS/orthostatic hypotension.

I also saw three neurologists- the head of thier headache program, a specialist in vestibular disorders (dizziness, but he is also certified to treat migraine) and an epileptologist.

The head of their headache program wasn't helpful. He simply told me that I "was one of the worst migraine patients he had ever seen." He also told me to get off the pain meds, but that he could not or would not treat the headache until the fainting was under control. So once again, I am just supposed to go it alone. (I wasn't impressed and their headache program is not any different from what was done at MHNI or Diamond.

I also saw a specialist in vestibular disorders, Dr. C, who also treats migraine. He said I didn't have new daily persistent headache, but only because I didn't fit one tiny piece of criteria- I had a history of headaches before the onset of NDPH. Still I believe it is NDP- most of the neurologists who have seen me over a long period of time agree with this diagnosis. He also wanted me to get off the pain meds. But, he did state that if I got off them and even if it helped the fainting some, but I was completely incapacitated by headache, then it was not a good solution."

Yesterday, after careful consideration, I decided to taper off the medications one more time. I decided to call Dr. C's office to see if there was anything at all I could take for the really bad ones while I am getting off the pain medication and subsequently when the migraines get bad when I am off medication. I just wanted to have some sort of back-up plan so I can stay off the pain meds when they become unbearable. I called and got his nurse. I hadn't even finished my sentence when she said, "No, we can't give you anything." When I asked why, she said "Well, he thinks you have medication overuse headache/rebound." I know that I am not in rebound- and several neurologistts have told me that "I am way, way past rebound." and shifted thier focus focus to treating the pain and keeping me out of the ER. During the appointment, the doctor reccomended stopping the medications to see what impact it had on the fainting. He never mentioned rebound.

I just don't understand any of this. How do I deal with the headaches when they become unbearable? How do we deal with the fainting? I just hate the fact that I have to go through this again without any pain medication, and without any clear way of treating the fainting. It feels like they are telling me to stop the pain meds, but are not giving me any alternatives in how to deal with them- just telling me to get through it alone.

Anyway, I started tapering off this morning. I am keeping a detailed record. Maybe then they will realize that both the pain and the fainting need to be treated and will stop blaming the meds.

Any ideas/thoughs would be welcome.

Thnaks for letting me vent.

Pain free days,
sailingm


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sailingmuffin

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Re: Tapering off meds-again

Post  Jewishmother on Tue Nov 29, 2011 8:41 am

Vent anytime my friend........you certainly have every right to be frustrated! I hate playing phone tag with nurses - is there any way the doc could return or call or could you communicate with him over email? From my experience nurses are just talking off the top of their heads and not taking the time to check medical records or check with the doc. Please continue to let us know how you are doing! L
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Re: Tapering off meds-again

Post  kathy on Wed Nov 30, 2011 12:28 am

If you can I really still recommend Dr. Reed at American migraine center in Lyndhurst 440-442-6000.I have never heard anything negative about her. I love her and a guy my hubby works with has gone from missing work almost weekly to maybe a couple times a year . Personally I try to avoid Cleveland Clinic at all cost. You are just a number.
I hate to say I am not surprised at your visit results. You have been curbed.
Kathy

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Re: Tapering off meds-again

Post  sailingmuffin on Wed Nov 30, 2011 2:51 pm

Hi All,

Thanks so much for the advice and support.

Kathy- if I lived closer I would check out your dr, but that would be kind of far for me. I do appreciate your comments on the cleveland clinic. I certainly felt like they did not want to deal with the problem when I spoke with them on Tuesday.

I am on day two of tapering off the meds. (I am glad I knew how to do it, because they were not helpful in that department.) I am down to 2 Tylenol3/day and 3 klonopin a day. Tomorrow, I go down to 2 tylenol3 and 2 klonopin, then one T3 and 2 klonopin, and finally one klonopin. I should be off both by Sunday.

Right now, the head pain is nearly unbearable and I have fainted/fallen 30 times today. I am taking some benedryl or periactin and that is helping some, but not nearly enough. I am keeping a detailed record and we will see how things go.

Pain free days,
sailingm
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