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New CH.com Forum › Cluster Headache Help and Support › Cluster Headache Specific › Seeing 2 Neurologists....?

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Seeing 2 Neurologists....? (Read 783 times)

Skyhawk5

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Seeing 2 Neurologists....?
Oct 24^th, 2008 at 6:29am

Due to our insurance co. stopping coverage for my current Neuro of 16+yrs. My PCP and finances are forcing me to see a covered Neuro. I saw both today. To say the least, with no sleep and a bit of nerves it made for a day that left me a little troubled.

The first appt. @ 8:00am was the new one a Dr. Cheng @ the U of Mich. PHD "Headache specialist". My wife and my daughter (budding RN) were with me.
This Dr. came in and soon impressed us as being not the every day Dr. HE took my blood pressure, no nurse or aid took part in the 1.5 hours with him.

To try and keep this short. He did an ONB, that lasted about 20hrs. (darn) Said I need to come off the 6 weeks of 60mgs of Prednisone (Rx'd by Dr. Riess) in 18dys. Up my verapamil from 480mg to 720mg. Try Lyrica 75mg 1-2 @ bed. Call him and HE will call me back if problems. OK. (I begged for the long pred from Dr. Riess) At 1:00pm see my dear DR. Riess Neurologist of mine 16+yrs and whom I plan to keep seeing as I can aford to: You haven't been on the pred that long we will tapper off in "5" days. 720mg of Verapamil for someone that has slightly low blood press when not in cycle (sometimes 100-/50) may get dizzy when you stand up and it's only a several more weeks and you should be coming out of cycle. (true). Lyrica side effects can be a bit much too. Also the pred crash may bring a CH flare up but we have the tools.

Understand I have only slept less than 2hrs in the last 48hrs. and am still just a little overloaded by these two appt.s. I know a little sleep will make it all better. I'm actually waiting a bit longer to knock myself out with a shot of DHE-45 as I met the limit for the week and the hour is approaching and the beast keeps waking me, so maybe all I'm asking of you fellow CH'rs is to tell me it's OK and go to sleep. ,Don

« Last Edit: Oct 24^th, 2008 at 6:36am by Skyhawk5 »

Though I walk through the valley of the shadow of the Beast , I have O2 so I fear him not.

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Just Plain Carl

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Re: Seeing 2 Neurologists....?
Reply #1 - Oct 24^th, 2008 at 7:16am

Hello Skyhawk,
   I'm by no means a doctor, but maybe changing your meds around might do the trick. I hope so for you sake.
   I use Prednisone also but for only a 10 day period. 60mg for a week and tapering off. I take this along with Verapamil, 360mg per day.
   As far as sleep goes, you can't function without it. When I go for 2-3 days with just a couple hours sleep, I am a complete zombie. Part of the problem is that when I am in that mode, I will force myself to stay awake, fearing the inevitable. Eventually I have to bite the bullet and go back to sleep immediately after an attack. Sometime this is every other hour.
   Your neuro should be able to give you something for that. I use Ambien and Melatonin. Can't say that it works all that well, but if it got me an extra hour or two sleep its worth it.
      Hang in there. Hope things get better for ya
   JPC

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DennisM1045 CH.com Alumnus Offline One wave at a time! Posts: 3437 Haverhill, Massachusetts, USA Gender:	Re: Seeing 2 Neurologists....? Reply #2 - Oct 24^th, 2008 at 10:37am 1st, Go to sleep It sounds to me like you've found a Dr that knows something about CH. Trust him to make the right decisions for you. Just make sure you work with him and let him know everything that is going on. Good luck... -Dennis-
Back to top	Where there is life, there is hope. Where there is Oxygen, you must use proper caution. So be safe, don't smoke while using O2. Kill the pain and not yourself. IP Logged

Skyhawk5

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Re: Seeing 2 Neurologists....?
Reply #3 - Oct 24^th, 2008 at 11:15am

Thanks guys. I am getting an hour at a time with the wake up K- 4-9 but aborting with the O2. I usually can't lay right back down. I find that if I take anything for sleep I wake dazed & sometimes don't get on the O2 as fast enough. I'm in peak cycle and being on my toes saves me from the dreaded k-10 killers.

Sometimes I do think if I just let one go maybe it would let me sleep. But often for me after one of those I get the afterburn that makes me want go to the ER for a shot of DHE. 12hrs of hell, BUT now as of last week I have it here at home. Just trying to hold out a few more hrs.

I used a Migranal inhaler this week to sleep and it counts for 2 shots of DHE and by the book I should wait until 8:00pm tonight to not go over the weekly limit of 6ml. Am I being too cautious? ,Don

« Last Edit: Oct 24^th, 2008 at 11:19am by Skyhawk5 »

Though I walk through the valley of the shadow of the Beast , I have O2 so I fear him not.

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