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Title: Positive ... Post by kyitb on Jul 16th, 2007, 8:42am I've had a real rough week and last night was one for the ages. I think I need to hear something positive. I don't have a real support structure (no family to speak of) and last night is not one that I think I can take again. I was thinking maybe some positive stories from CH sufferers like me might kinda help with today. |
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Title: Re: Positive ... Post by nani on Jul 16th, 2007, 10:21am on 07/16/07 at 08:42:22, kyitb wrote:
Yes you do. You have us. :) There's always hope. You might find the right meds, you might find the right alternatives, and you might even go into remission. Clusterheads are the strongest people I know. Hang in there, OK? pain free wishes, nani |
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Title: Re: Positive ... Post by birdman on Jul 16th, 2007, 11:05am Once again Nani nails it right on the head. We are your family, you inherited us. Stay strong and keep fighting. Have you tried O2 are any alternative medication? |
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Title: Re: Positive ... Post by kyitb on Jul 16th, 2007, 11:18am I've tried Zomig, Imitrex, Amerge. (Abortive) Verapamil & lithium (preventative) I've tried hot showers cold showers caffiene no-caffiene. Alcohol no-alcohol. You get the point. Oxygen currently is not an option. I have no insurance since I lost my last job. I am in sales. It's a gift. However, when you don't make it to appointments because of attacks. Companies aren't likely to keep you around. My last boss was understanding but, there comes a time when they have to be real. I'm willing to try anything though. Yesterday I tried the red-bull thing. Woohoo it worked but alas an hour later I was doing the dance. The frequency has grown in the last 2 years to a point where I get around 5 a day none lasting less than an hour. My back and neck are one big conjoined lump. If I manage to get comgofrtable long enough to take a nap I get one an hour later. It's a constant struggle. Anyone ever have anything good come from these? I appreciate the support. I hope my reply doesn't seem argumentative. I'm just not in a very happy place right now ... |
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Title: Re: Positive ... Post by nani on Jul 16th, 2007, 11:25am on 07/16/07 at 11:18:29, kyitb wrote:
Well, I like to think I've gained a real ability to empathize. I'm a stronger woman because of them, too. And the friends I might not have ever known without them...well... that's priceless. I got my oxygen when I didn't have insurance. I bought a new tank at a welding supply for about $130. I get refills for $24 I got a 540 (high flow) regulator from e-bay,and a clustermasx from www.clustermasx.com Check out this site, also: www.clusterbusters.com Alternatives broke a five year chronic cycle for me. ;;D |
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Title: Re: Positive ... Post by kyitb on Jul 16th, 2007, 11:37am I've checked out that website. I'm a little concerned that my "partying" is what caused the Ch. Have used since and it had no affect on frequency or strength. I'm not trying to shoot down your suggestions. I'll look into the oxygen tank. |
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Title: Re: Positive ... Post by birdman on Jul 16th, 2007, 11:49am Definetly look into O2, it is not that expensive if you shop around and get your equipment online. Here's wishing you pain free days soon. Tim |
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Title: Re: Positive ... Post by nani on Jul 16th, 2007, 11:51am A lot of us blamed partying, LOL. Alcohol and marijuana trigger some, but it's a basic problem in our hypothalamus that likely causes these. |
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Title: Re: Positive ... Post by starlight on Jul 16th, 2007, 12:02pm kytib, I'm sorry you are having such a rough time. Please look into oxygen like Nani said. I always end up paying out of pocket too--but it raises your quality of life so much it is worth it. Make sure you get the right O2 flow and right mask. I'm episodic but when I get them I get same frequency and length you are describing--you gotta get that O2. One other thing you could try is melatonin--according to studies it does help some chronics. Try taking 12mg before bed--make sure it is vegetarian kind. What is your pattern? Do you get these mostly during day? Either way, try taking it. Let us know how you are OK? Star Edited to say: might want to start with 9mg and go up to 12 mg if that is not doing the trick --good luck to you |
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Title: Re: Positive ... Post by kyitb on Jul 16th, 2007, 12:15pm My pattern is 24 hours. I haven't found a real pattern other than that I can't remember the last time I didn't wake up with one. It's been months. Even when I did work I never had to set an alarm. I'd wake up at some point and stay awake until I had to go to work. In the last 3 months I've been getting them all day any time of the day. When the sun goes down is when they are at their worse. I rarley have one that makes me insane during the day. I usually get at least one during the day. |
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Title: Re: Positive ... Post by birdman on Jul 16th, 2007, 1:20pm Have you ever done a prednisone taper? I am not a big fan of it because it makes me very agressive and grounchy but it has always given me a two week break. |
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Title: Re: Positive ... Post by BarbaraD on Jul 16th, 2007, 2:31pm The pred taper is a good idea. It's cheap and it does give you a break. Melatonin at night (give it a couple of weeks to get in your system -- don't give up the first time it doesn't work - took me three tries before I stuck with it). Get the rest at night and you'll do better during the day. Keep Red Bull handy and down it at the first sign of the demon. O2 is wonderful (most of the time). Right now I know just how you feel. I'm coming down off a hit and trying to deal with the IRS on an audit (and the auditor is a witch with a capital B). Just hang in there honey - we've all been where you are and we get tougher and tougher. Just know you're not alone - we're here for ya and we DO know how you feel. Hugs BD |
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Title: Re: Positive ... Post by Patrick_A on Jul 16th, 2007, 5:08pm The Prednisone taper worked for me, alongside with 920mgs of Verapamil. I was episodic, I take it ur Chronic, but still might work. The main thing is, DON'T GIVE UP! Lots of support here, and lots of friends here that have the same thing in common as you. Get up off of the couch and do something, DO NOT let these things rule your life. If there is anything I can help you with, just holler. PA |
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Title: Re: Positive ... Post by thebbz on Jul 16th, 2007, 6:33pm Alot of good things can come from CH. You become a very good planner. Timing is everything. I have lost work because of these, but not in the last ten years. You have to have abortives, transitional, and preventative meds. You will have to use them in tandem, one at a time and all togther sometimes depending on the frequency and intensity, interfacing with your work schedule. First line..02,caffeine,cafergot. Those are the cheapies.02 anytime and caffeine in the morning and through the day. Save the big aborts...triptans for the bad nighttime hits if you can. Transitional meds next.....pred and lithium...sometimes other cocktails. You just cant keep beating your head, you need meds, timing, and a couple of plans. Never relax ever. Reconsider the alternatives, only this time they are medicinal and not recreational. The numbers of pain free people because of them are fact. try not to be to hard on yourself, by anyones definition these are unbearable. YOU are tough. Lots of tricks These are just a few. all the best jb |
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Title: Re: Positive ... Post by Guiseppi on Jul 16th, 2007, 6:47pm And don't blame your party days. I'm a goody two shoes who never did any of that stuff and became a cop. Going on 30 years with the beast. Another strong vote for oxygen!!!! Guiseppi |
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Title: Re: Positive ... Post by kyitb on Jul 16th, 2007, 6:53pm Wow. I'm overwhelmed by the response. I plead ignorance on the taper thing. Gonna have to look that one up. Thanks i'm actually smiling now ... Hopefully tonight will be a better one. |
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Title: Re: Positive ... Post by Guiseppi on Jul 16th, 2007, 7:01pm Prednisone taper just refers to going on prednisone for a week or two. It's nasty stuff to take long term but is awesome when you are at wits end, sounds like you might be geting close, and you just need a break. I'll go from about 80 mg a day of prednisone, "tapering" down 5-10 mg a day till I zero out again. It provides a complete break from the headaches for me. Guiseppi |
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Title: Re: Positive ... Post by thebbz on Jul 16th, 2007, 7:03pm Atta girl....and the pred is dirt cheap. [smiley=twocents.gif] |
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Title: Re: Positive ... Post by kyitb on Jul 16th, 2007, 7:06pm Stupid question ... Why not stay on it? Side effects worse than the attacks? |
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Title: Re: Positive ... Post by thebbz on Jul 16th, 2007, 7:12pm Quote:
http://www.healthline.com/multumcontent/prednisone?utm_source=drugs&utm_campaign=multum&utm_medium=msn&utm_term=prednisone Exactly jb |
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Title: Re: Positive ... Post by kyitb on Jul 16th, 2007, 7:18pm Ahh. I see. I'll have to see if I can get it prescribed to me... Thanks again to everyone ... Do you think seeing a masseuse is a good idea for all the lumps on my back or are they different from normal tight muscles? They are much more tender than your average soreness ... |
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Title: Re: Positive ... Post by George_J on Jul 16th, 2007, 7:39pm on 07/16/07 at 19:18:45, kyitb wrote:
Sounds like they may be "cluster lumps"--actually swollen nerve ganglia and the surrounding tissues. Some of us have them, some don't. Lots of people have them at the sphenopalatine ganglion at the base of the skull. Some have them near C5 at the back of the neck. Mine seems to form at T1/C7 where the neck meets the shoulder. Some have them on the roof of the mouth. They form on the cluster side. One of the less pleasant side effects of CH, IMO. Not much you can do about them that I've found. I've tried massage therapy during a cycle to try and loosen the stinkin' thing, and I can't recommend it. Hurts like heck to have it manipulated by a massage therapist, and it doesn't seem to help. Your mileage may vary. Best wishes, George |
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Title: Re: Positive ... Post by Guiseppi on Jul 16th, 2007, 8:12pm I'll second what George said. Had a deep tissue massage to try and iron my lump out. Very painful, minimal; relief!!! Guiseppi |
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Title: Re: Positive ... Post by kyitb on Jul 16th, 2007, 8:30pm Anything give relief to those things? I've been rubbing capzasin on it like a mad man lately with no relief ... |
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Title: Re: Positive ... Post by George_J on Jul 16th, 2007, 8:40pm on 07/16/07 at 20:30:47, kyitb wrote:
Try applying ice. Seems to provide some temporary respite. If the lump is more prominent and painful during a hit, ice applied to them can actually help to tone the thing down a bit. Best, George |
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Title: Re: Positive ... Post by kyitb on Jul 16th, 2007, 9:38pm Thank you i'll be sure to try that ... |
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