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Chris H

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Cluster symptom or something else?
Oct 29^th, 2010 at 10:12am

Background: chronic CH without remission for 16 months. Frequent dizziness, occasional vertigo.
prior meds - Vicodin, Topomax, Lamictal, Depakote, Toradol injection. Current meds - v=erapamil, Lithium, Gabapentin, Imitrex iinj, O2 15lpm.

Over the past 3 weeks I've had 4 episodes of very sever dizziness and passed out completely once. The last time I felt extremely hot, was sweating profusely and could do nothing but lie down and wait it out. Episodes last about an hour.

I think this is not CH related, but may be related to meds, I started lithium after the first episode, was on depakote at the time, so I don't think it's either of these.

I went to cardiologist and he's putting me on heart monitor. EKG was fine. My blood pressure normally runs about 120/80, was 110/75 at cardio office.

Anyone had similar symptoms? Ideas?

-Chris

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George CH.com Moderator CH.com Alumnus Offline Black-Billed Magpie Posts: 8126 Boise, Idaho USA Gender:	Re: Cluster symptom or something else? Reply #1 - Oct 29^th, 2010 at 10:21am Might be meds-related, or it might be something else. Getting it checked out is a good idea. I doubt whether it has anything to do with CH itself--at least I've never experienced anything similar, FWIW. Best, George
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mikstudie CH.com Old Timer Offline Beastmaster Posts: 284 Westland Mi. Gender:	Re: Cluster symptom or something else? Reply #2 - Oct 29^th, 2010 at 10:23am Does sound like a medication thing, dont mess around, sounds like you and your doc need to figure this out ASAP!!!
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wimsey1 CH.com Alumnus Offline I Love CH.com! Posts: 2457 MA Gender:	Re: Cluster symptom or something else? Reply #3 - Oct 29^th, 2010 at 10:54am Man, that's a lot of stuff. I'd definitely get a doctor's opinion. One thought...sometimes even 15lpm aren't enough. I go as high as 60lpm through a demand flow valve and then ease up on the pressure as the pain ebbs. Just a thought. Hopin' and prayin' you find some answers. lance
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his wife CH.com Old Timer Offline The sweetest sound is my children's laughter Posts: 271	Re: Cluster symptom or something else? Reply #4 - Oct 29^th, 2010 at 11:14am Hi Chris...sorry to hear you're still suffering. Just curious...our PM conversations...did you happen to get an appt for vestibular testing? Hang tough...
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Kim D

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Re: Cluster symptom or something else?
Reply #5 - Oct 29^th, 2010 at 11:27am

How much verapamil are you taking? Is it immediate release or extended release? (is it a pill or a capsule?) During my last episode, I had just turned 19 and I weigh about 145lbs, and I was taking between 480 and 720mg of Verapamil Extended Release daily. I'd take 240mg in the morning and the rest before I layed down to sleep and I'd wake up and could hardly stand or breathe. There were times I'd be in the shower and I couldn't stand so I'd sit and wash up. I even counted my heart rate at 25-30 beats per minute once. I ended up passing out one morning and my doctor lowered my dose, now I take 240mg max with Lithium (and it's working, PRAISE GOD).

Also...like right now I'm on prednisone, and that alone makes me really hot and sweaty. Read up on the side effects of the medicines you're taking. Getting hot isn't necessarily a bad thing, just a side effect. I just started lithium, and I have been a little achy and dizzy but it's a lot better than having a CH, right?

I'd definitely keep checking in with your doctor though!

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Faith is being sure of what we hope for and certain of what we do not see. Hebrews 11:1.

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Chris H

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Re: Cluster symptom or something else?
Reply #6 - Oct 29^th, 2010 at 11:46am

Wimsey, 60LPM seems so high! I assume you need an on demand to get there. I haven't seen many regulators that go that high. I did order the optimask...still using the standard non re-breather. I was considering getting a 25 lpm reg. Is that worth the $100 or so?

His wife (I feel kind of awkward to addressing someone as "his wife") I have requested vestib testing at Jeff, don't know when yet.

Kim, I was on 720 verapamil, cardio dropped that to 600 yesterday. I don't feel any difference yet, but it's too early to tell.

-Chris

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Kim D CH.com Junior Offline Posts: 77 Nashville, TN Gender:	Re: Cluster symptom or something else? Reply #7 - Oct 29^th, 2010 at 12:01pm Where do you get you O2 from and do you have a prescription? I rent my tanks from a medical supply store through my prescription, and they gave me a +25LPM regulator and a NRB mask. I pay like 20 dollars a month for unlimited tanks + the regulator/mask.
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his wife CH.com Old Timer Offline The sweetest sound is my children's laughter Posts: 271	Re: Cluster symptom or something else? Reply #8 - Oct 29^th, 2010 at 2:25pm Chris H wrote on Oct 29^th, 2010 at 11:46am: His wife (I feel kind of awkward to addressing someone as "his wife") I have requested vestib testing at Jeff, don't know when yet. Ok, you can call me "Pickles" lol Seriously, glad you're looking into it.
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black CH.com Old Timer Offline I Love CH.com! Posts: 347 Greece,Athens Gender:	Re: Cluster symptom or something else? Reply #9 - Oct 29^th, 2010 at 2:34pm My personal opinion,and only of course, is that verapamil and Lithium AND Gabapentin is too much. Maybe i am wrong but i ve never read a study that suggests take all three together. but as i said just my opinion.
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Chris H

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Re: Cluster symptom or something else?
Reply #10 - Oct 29^th, 2010 at 6:46pm

Kim, Yes, I have a script, but it's actually for 12lpm. Jefferson Headache Center doesn't support the use of higher rates.

PICKLES! That's much better!

The Gabapentin was started when I was on Depakote. He stopped the Depakote but not the Gaba, started Lithium. I've been on Verapamil since March. I honestly thinks it's all too much and I wonder if I'd be doing better without the meds. All things considered, I'm down from 2-4 major hits a day to 1-2 with occasional free days.

-Chris

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Callico

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Re: Cluster symptom or something else?
Reply #11 - Oct 29^th, 2010 at 10:55pm

Look into Kudzu. Research it well before making a change. I switched off of Lith and Verap and went to Kudzu. Have the same relief w/out side effects. DO NOT make the change cold turkey, and NOT without researching it VERY carefully. Talk with your Dr. It sounds med related to me, but there are other issues that can have similar symptoms to CH also and can be a whole lot worse.

I'm not trying to play Dr. with you Wink

but I would be camping in his office until I got some kind of an answer.

Jerry

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