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Topic: Need some more advice Please (Read 316 times) |
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zoey
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Need some more advice Please
« on: Jul 13th, 2007, 4:26am » |
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I intraduced myself a little while ago maybe a week or so. I've been in a weird bad cycle for little over a month; which is unuaslly since they haven't happen like this for 2 yrs. They are hitting to an 8 to a 10 where my hair hurts and my scalp and parts of my face feel numb. I know it sounds weird. This only happens when the pain last this long. I finally got my PCP to give me steroids and Trex because before that for a little while I was taking Relpax which wasn't doing much of a darn. I been on almost every gamit of treatment. But been switch to Topomax for the past two years. The last time that it was this bad it lasted for months. I found a nuro in my area to see if I could go back a better preventive. My spouse I think wants to give me anything to sleep or knock me out. I want to drill a hole in my head. I been to the ER and they end up given me Trex or something like antinflamtion drug. I have advil and Trex at home. I end up just given up on the ER and on my PCP. The nero appt still a week a way. I feel bad because I end up taken it out on my spouse. I wish there was something better I could do. Its been getting harder to stay positive. I been acting like a total jerk. I wish there was something. When I first has ch they were chronic and went a way for a bit. I just hope and pray there something I can do. I know I am ramble it just feels good to type this out and anyone with similiar experiences feeling anything makes me feel not alone. Thank you, all for being there. This site is the best thing. And thinks for the jokes pages.
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BarbaraD
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Re: Need some more advice Please
« Reply #1 on: Jul 13th, 2007, 5:13am » |
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You might try Red Bull at the first sign of a hit.
O2 is the best abort for a lot of us. Trex is still the drug of choice for the most part (I take ergotomine).
Prevents -- verap, lithium, topamax, etc. Everyone has their own "magic" cocktail.
Melatonin at night (6-12 mg).
Hope it's a short cycle foryou.
Hugs BD
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GrandPotentate
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Re: Need some more advice Please
« Reply #2 on: Jul 13th, 2007, 8:28am » |
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Oxygen has done wonders for a lot of us, I recommend that you give it a try if you haven't done so yet. A little bit doesn't do squat, you need the rebreather and pure O2 as soon as it hits.
Caffiene and RedBull did nothing for me except perhaps delay pain. But that helped at work - a mild buzz got me through the day and kept the pain on a pretty regular evening / night schedule where I could handle it better.
I haven't had any experience with the other meds, but could give you a long list of others I've tried that did nothing but make me dopey between the hits.
I wish you luck with the Neuro. Where is their sense of urgency? In the meantime, keep a log and take lots of notes, get your questions in order.
Jon
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Jon
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Patrick_A
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Re: Need some more advice Please
« Reply #3 on: Jul 13th, 2007, 2:25pm » |
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Take a hot shower or bath. Immerse yourself in the hot water. It always made it a little bit better for me. Other than that I don't have much else.
I am sorry you are hurting. There are a list of good Neuros somewhere on this site or the OUCH site. Go there and find a good Neuro nearest you and then you can find someone you trust.
Patrick_A
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DennisM1045
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Re: Need some more advice Please
« Reply #4 on: Jul 13th, 2007, 3:39pm » |
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Barbara is right on target with her advice on meds. Especially on O2. I hope your new Neurologist is up on CH. It makes all the difference. So your challenge now is to hang on for a week to get to this new Neurologist. I know how it feels to “take it out on my spouse” and feel like your “acting like a total jerk”. My wife says its exhausting trying to keep the kids away from me. When I’m in cycle my wife would love to knock me out too. So I’ve been there, done that.
It seems when we are at our wits end with pain we hurt those that love us most. The guilt can be crushing. Venting/ranting/rambling here is great outlet. We know. We live it too. You are not alone. Stay in touch and let us know how things go.
Hugs and vibes are coming your way.
-Dennis-
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sandie99
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Re: Need some more advice Please
« Reply #5 on: Jul 13th, 2007, 4:07pm » |
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Zoey,
I'm absolutely sure that you will find a treatment, which works for you. There a plenty of things to try. I know too well how frustrating that search before that can be and I hope and pray that you will find that soon.
PF wishes,
Sanna
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"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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chrisw
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Re: Need some more advice Please
« Reply #6 on: Jul 13th, 2007, 5:16pm » |
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Also, when you go to the nuero, ask him point blank if he has had experience with clusters. I went through so many nueros who had no idea what they were dealing with. Many spend most of their time dealing with stroke victims and epilepsy etc. Tell him you want O2 right away, and trex injections. follow the trex tip on the side, and it will last a lot longer.
good luck,
chrisw
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