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Title: New Blood Post by race2jzus on Sep 13th, 2002, 10:22am Hi, my name is Larry and I'm so greatful to find this site. I had no idea there were so many others with this and people far worse off then me in duration of the attacks. I'm sorry to see that because these are so terrible. Me, my mom and sisters deal with these. I get them every August and Semptember. No one has really ever told me much about these. Honestly, the most I ever heard is on the site and I'm a bit overwhelmed by what I'm reading. I have had them start at a very early age and the only treatments I've used is cold, diverting tactics, and sinus and pain killers. The older I get the more accute they are. I'm in Michigan and when I lived in Florida I had them less intense than I do here. Recently I tried a new doctor. He was a jerk. Ever get one of those? Anyhow he wanted to put me on Lithium and Steriods right away. Well, he scared me and I was out of there. I went back to my old doctor and got some more sinus and pain killer stuff. I'm wondering though why it seems you use something for awhile, it works and then it no longer works? First, Benedryl alone worked. Then it didn't and I got Duccosate Potassium. That worked for years but then I had to use sinus meds and pain killers. I guess you do what you have to do right? I'm just kind of scared. Last night I took Allegra and Advil Migraine and still had to take a Naproxin tab and use a cold pad. It worked great but wow. But see I know mine will only last for several weeks tops and I don't want to go Lithium and Steriods really. Do you have to? Does that really work? Are the side effects bad? What I would like to do is somehow prepare for this next year. I'm also wondering if any of you suffer with a stiff neck or upper back or even low back problems throughout the year. Lots of questions for new blood :) I have a good sense humor too so don't be afraid to joke with me. Thanks, Larry |
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Title: Re: New Blood Post by Marshall_D on Sep 13th, 2002, 11:00am Welcome aboard, Larry, I'm an old time Cluster sufferer (Since 1981), but new to this site also. Re: the neck issue...I did find out I have two very severely herniated discs in my neck (C-6:C-7) & C-8 Nerve Root. I don't know if this is an issue with my Cluster's but who knows ;). You do whatever takes away or limits the Cluster. If OTC Meds or Analgesics work for you, keep with it. The less meds the better. Good Luck... |
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Title: Re: New Blood Post by domm on Sep 13th, 2002, 4:43pm Larry - I've also lived in Fla (my first cycle started there) then moved again and again, and again ending up in Michigan also. (Check my profile for location if you're interested.) and yes the meds do work. I have found through moving so damn much that you have to educate the docs. print out the info you can find by clicking on the medical info button in the upper left and take it to them. Visit the OUCH site too - outstanding info there. Good advise there also in dealing with docs. Hang in there and good luck finding the right doc and meds that work for you. domm |
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Title: Re: New Blood Post by ChristineL on Sep 14th, 2002, 7:51am Larry, I have had CH's since the early 70's. Yes, Prednisone works for many of us. For me this bout the Pred lessened the number of attacks and the severity but it did not break the cycle so I have moved on to Verapamil. When I get a CH I do O2 and Imitrex and the headache is gone within 5-10 minutes. I had some mild side effects as I was going off the Pred but nothing I couldn't live with. I was only on it for 2 months. I don't think your new Dr. was a jerk. He prescribed meds that are very helpful to many with CH's. Pain killers are not the usual choice for CH's and many times they can cause rebound headaches. Lithium is a big help for many here. I tried it years ago but have not used it this cycle as the Verapamil seems to be working. Check out the buttons on the left for the best info on CH's and the OUCH website is also great. Chris L |
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Title: Re: New Blood Post by Ueli on Sep 14th, 2002, 10:35am Hi Larry, I'm with Christine, reverse the judgement which doctor is a jerk. Cluster attacks are so short that OTC painkillers are far to slow to kick in. Here some quotes from http://www.rxlist.com/: Advil (Ibuprofen) ... is indicated for relief of mild to moderate pain (hardly the description of a cluster attack >:( ). (Advil Migraine is the old stuff in a new package and a fancy name, in an attempt to grab a higher share of the market. It is not even mentioned on rxlist.com) Benadryl (Diphenhydramine) ... is an antihistamine drug to amelioration allergic reactions Allegra (Fexofenadine) ... is a histamine antagonist to treat allergic rhinitis Once upon a time it was thought that histamine plays a major role in clusters, implying a connection to allergies. But the stuffed up or running nose often accompanying a cluster attack, although looking like a hay fever, is a secondary effect and treating that may alleviate this problem, but has no effect on the pain of the attack. It is your choice to ride out the attacks without any effective treatment (painkillers and antihistamines don't count as such, they only burn a hole in your stomach) or go an effective course of prevention and/or abortion. Time honored preventative treatments: A burst of steroids can sometimes end a cluster cycle, if not it gives a few days relief until other preventative kick in: Verapamil and lithium are for many very effective for prevention. There are two (and only two) medications to abort an attack: Imitrex (Sumatriptan) injections abort an attack in 5 minutes. Inhaling 100% oxygen at the beginning of an attack aborts it often in 5 to 10 minutes. Oxygen is much more benign than OTC painkillers, and it has another advantage: it usually helps. Larry, seek the help of a neurologist knowledgeable in CH instead of sticking with a GP that wants to treat sinus problems. PFNADs Ueli |
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Title: Re: New Blood Post by race2jzus on Sep 14th, 2002, 12:51pm Thanks for all the replies. I want to clarify something which is hard I know to understand in a post. I was NOT saying the Dr was a jerk because of what he described. He reall was just a jerk. He was agitated with me and acted very arrogant. I have read a little on this and steriod is an option. Steriods and Lithium all togather at once for a first time is a bit extreme especially since he doesn't know me. He wasn't even going to see again for another 4 weeks later. Honestly, I guess I'm lucky. The pain killers and anithistimine do work for me. I just don't like having to take all that but to have to fiddle with Lithium and all the toll that takes on your body, I rather take a Tums for the stomach :) Thanks for the imput. We all have to do what we have to do. Larry J. |
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