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Title: Hi all! I would like to introduce myself.... Post by TraceaTX on Jun 1st, 2003, 9:18am My name is Tracea and I live in Kingwood, TX. While I have been what I thought was a "migraine" sufferer most of my life (starting at 8 years of age) I learned the hard way that I am a clusterhead. I hadn't had an episode in a few years and last October BAM! The devil hits me square in the face. I thought I was going to die. My right eye and temple felt like someone had beat the crud out of me and then kept a knife stuck there for good measure. Nothing I did helped. Of course in the past nothing ever worked anyway (sleep, narcs, etc) so of course I went to my family doc who said it was a sinus infection (huh???) after 2 weeks on antibiotics she sent me to and ENT who said I had Trigeminal Neuralgia and sent me to a Neurologist. At least he had the mental capacity to tell me I was suffering from the migraine from hell. Unfortunately he put me on a low dose of DHE and narcs which did absolutely nothing. But now I could pace like a mad woman at the hospital instead of freaking out my 5 year old. :( At discharge I was prescribed Topamax and a couple of other meds that I can't even remember now (we are now into November). Eventually - because the cycle still never ended, I was prescribed Stadol which completely freaked me out because I really hadn't slept in 8 weeks. I had had enough! I went to see the Headache Center of Houston. They admitted me back to the hospital, detoxed me, and I spent 11 days there on high doses of DHE, Topamax, Depakote, Steroids. Eventually the cycle was broken!!! By now we are into late January 2003. Now here we are on June 1 and guess what? I am headed back into the hospital because I am into another cycle. This one has lasted for a month. I have fought going back in for 2 weeks because I feel like I have failed for some reason. I hate my brain and I really wish my nose would stop running and my eye would stop swelling. My short term memory is fuzzy and I am over all these meds. I am on a ton of Seroquel just so I can try to sleep at night (it only lasts 3 hours). I am grateful that I found this place with other folks like me that understand the horrors of CH because if I have to go thru this alone I don't know if I can do it. My family tries to understand but it is really isolating. I am sorry for rambling. I promise to be more upbeat next time. Tracea |
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Title: Re: Hi all! I would like to introduce myself.... Post by OneEyeBlind on Jun 1st, 2003, 9:24am Welcome to the board !!! Sorry ya had to find us though. Some good drugs for clusters are Verapamil as a preventative, and Imitrex (I like the injections ... they work really fast and make life bearable) and O2 as abortives. Read around on the site. Let us know what you have tried, and we'll try and steer you in a direction that may help with this cycle. Lots of different stuff works for people on the board, but the ones I mentioned are probably the most commonly used. There is an O2 page being worked on that has great info in it. There is currently a thread with a link to it. Again, welcome, and kick back and start reading. |
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Title: Re: Hi all! I would like to introduce myself.... Post by dellp on Jun 1st, 2003, 9:57am Greetings Tracea, So very glad you found us. In just 2 weeks this group has literally changed my life. Settle in and look around. Great Stuff here. Great People here. Praying PFDAN find you real soon, like RIGHT NOW ! Dell |
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Title: Re: Hi all! I would like to introduce myself.... Post by Roxy on Jun 1st, 2003, 9:59am Hi Tracea, nice to see another face, so to speak, from Texas.....just hate that you have had to find us. Here's the link on 02: http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm Print out the information, and take it to your doctor. You say you are going to the Headache Center of Houston....I'm not sure which one that is. I go to Dr. Mathew at the Houston Headache Center.....and he wrote me a script for 02 the first 2 minutes I was in his office. He is also very charitable with the imitrex scripts. Good luck, and NO.....you aren't alone anymore, Tracey |
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Title: Re: Hi all! I would like to introduce myself.... Post by don on Jun 1st, 2003, 10:09am In 26 years of CH hell I've spent exactly one night inpatient at the hospital. It's just not neccesary with a good pain management program in place. Get yourself an aggresive, open minded and knowledgable nuero. My one night in was because my neuro seemed to be more frustrated than I was., LOL He hit me with a shot of morphine before I could escape to the parking lot and called my wife on me. LMAO |
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Title: Re: Hi all! I would like to introduce myself.... Post by catlind on Jun 1st, 2003, 10:25am Welcome aboard Tracea! Sorry you had need to find us, but if you are going to be anywhere, this is the place to be for support and understanding :) Read read and read some more, there is a wealth of info in these pages. Ask questions and hopefully you will find a combination of meds that works for you. The most common ones are verapamil as a preventative, and immitrex and O2 as abortives. There is no need for you to rely on narcotics as they don't work. Good luck! Cat |
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Title: Re: Hi all! I would like to introduce myself.... Post by cathy on Jun 1st, 2003, 1:23pm Hi Tracea...Welcome to the family, you are no longer alone...lots of great informaion and people who not only understand what your going through, but care...sorry you had to find us...wishing you some PF time. Cathy :) |
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Title: Re: Hi all! I would like to introduce myself.... Post by fubar on Jun 1st, 2003, 1:39pm Tracea, Congratulations on finding the board! I had never met another clusterhead until I found this place. I felt like this condition was beyond explanation. I didn't think I would ever be able to understand this pain or explain it to anybody. Now, I am armed with information and supporters and friends who understand. It's a great thing. Sorry you had to look for us, but now that you're here, I hope we can help change your life. -Fu |
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Title: Re: Hi all! I would like to introduce myself.... Post by cootie on Jun 1st, 2003, 2:23pm Hey TraceaTX.....nice ta meet ya. Good luck with the next hospital stay and hope you can end this cycle FAST and not go thru all the hell. Am wishin good luck on ya !! Pam that doesn't like goin ta hell |
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Title: Re: Hi all! I would like to introduce myself.... Post by Kirk on Jun 1st, 2003, 4:23pm Hi: Sorry to see a nice girl like you in a place like this. Verapamil, Imitrex and O2 works for me. You might wantto talk it over with your Doc. Good luck and please be PF TTFN Kirk |
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Title: Re: Hi all! I would like to introduce myself.... Post by ShariRae on Jun 1st, 2003, 9:17pm hi TraceaTX....sorry ya had need to find us.. but welcome, read all you can & take the info with you to the docs. Like anything else, nothing works for everyone, but I too had my greatest success with Verapamil & Imitrex...ya may want to ask the doc for this combo..it has worked for a lot of us here...so has Verapamil & Lithium...it may take a while, but hang in there till ya find what works for you...and we are here to help ya anytime. Huggsss Shari |
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Title: Re: Hi all! I would like to introduce myself.... Post by Charlie on Jun 1st, 2003, 9:32pm Welcome to our madhouse Tracea. You'll find a ton of good ideas here and feel free to come and rant. It's what we do. I'll wager that your short term memory loss has something to do with Topamax. It had that effect on me too. Can't take the stuff. Here is a technique that worked great for me and others here. Give it a shot and good luck. Dr. Wright's Circulatory Technique This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been helpful to many. When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand. This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. Often, I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time but when this works, the relief is almost immediate. I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. Don’t let up until you are sure the attack has ended. This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience. When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance. I wish you the best of luck - Charlie Strand |
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Title: Re: Hi all! I would like to introduce myself.... Post by Mastifflvr28 on Jun 1st, 2003, 11:00pm welcome to our nitemare Tracea, Please listen to all the advice you've gotten. There IS a better way for you. Wish you luck, Mast |
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Title: Re: Hi all! I would like to introduce myself.... Post by oringkid on Jun 1st, 2003, 11:48pm Wow Mast that brings back memories and is very appropo... Welcome to my (our) nightmare I think your gonna like it I think your gonna feeeel right at home...heeere Welcome Tracea! (wish I could remember the rest of the lyrics..LOL) Sherry |
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Title: Re: Hi all! I would like to introduce myself.... Post by Georgia on Jun 2nd, 2003, 12:11am Hi Tracea, I started with migraines too...had them for as long as I can remember. My clusters started about 5 years ago. I thought my migraines had just gone bolistic, either that or I was having an aneurism. I now deal with both. I was also hospitalized with DHE treatments for a week a few years ago. I was totally pain free while I was in the hospital, once I got out though, the CH came back....with a vengeance. I would NEVER do that again. This site has so much information, so many options, so much support. It's been home for me since the day I found it. It's more than just a website - it's an addiction. Coincidentally, my fiance (Dennis - aka rumplestiltskin, also a CH'er) and I live about 30-45 minutes from Kingwood in Montgomery (west of Conroe). If you have never met another clsuterhead in person, there is no way for me to describe it.....wonderful beyond words. He and I would love to meet you, if you 're interested. You can email me anytime, for whatever reason. Oh - and by the way...you never have to apologize for talking about your ch here....you don't have to pretend to be upbeat...we know it hurts like hell, all of it....the CH, the fear, the isolation...we know, we understand, we care. Welcome home. Peace and love, Georgia |
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Title: Re: Hi all! I would like to introduce myself.... Post by gene on Jun 2nd, 2003, 12:49am So truly sorry to hear the horror you're haveing to endure just now. But Don said it so well. These nightmares can be arrested by medications: imitrex shots. They work unbelievably well for me!!! 2 minutes or so GONE. They have put me on a 10 day taper of prednisone and within an hour of the first dose the first day no more chs (4 full days now!!) May we both be strong enough, LOVE Gene |
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Title: Re: Hi all! I would like to introduce myself.... Post by Callico_Kid on Jun 2nd, 2003, 1:34am Welcome aboard! As was mentioned several times, READ, READ, READ! There is a lot of info here tht most Docs don't know. Find out how knowlegeable your Dr really is about CH. You may have to educate him or fire him and find another. Narcs are not the way. The best they can do is dull things to where you still hurt, but you just don't care. Then you have to deal with addiction and the constantly increasing doses do deal with the pain and the side effects. Really glad you found us. It took me twenty five years to find this place, and I wouldn't trade it for all the Drs in the world. Don't hesitate to vent. You won't shock us. Check out the O2 link. It helps. jc |
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Title: Re: Hi all! I would like to introduce myself.... Post by juvy on Jun 2nd, 2003, 1:38am Tracea, I hate it that you have to be here but WELCOME to the family. ~April |
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Title: Re: Hi all! I would like to introduce myself.... Post by cbolony on Jun 2nd, 2003, 8:23am TraceaTX welcome to the board sorry you are getting hit so hard.Can not add anything here all the members gave you great advice they are better than the neuro. I take verapamil 240mgs 2x aday and imitrex injections |
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Title: Re: Hi all! I would like to introduce myself.... Post by jonny on Jun 2nd, 2003, 4:15pm on 06/02/03 at 00:11:49, Georgia wrote:
TOUCHE' GEORGIA!!! Give the troll a nuggie for me, please ;D ..........................jonny |
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Title: Re: Hi all! I would like to introduce myself.... Post by katethecelt on Jun 2nd, 2003, 9:19pm Tracea, Welcome to the family. You are not alone & will get through this. I hope your stay in the hospital is short and ends your cycle. It's helpful to keep notes on treatments, meds, side effects, symptoms, web sites, along with a journal of your CH's. Everyone has given you great advice. Wishing you PFDAN's, Kate |
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Title: Re: Hi all! I would like to introduce myself.... Post by TraceaTX on Jun 7th, 2003, 3:25pm Well I am out of the hospital..... The new meds added to my list are Lithium 300mg bid and Verapamil 240 bid (my blood pressure is really low). I went in on 6/1 and they started the DHE, Decadron, Depakene along with my reg meds of Effexor, Topamax, Seroquel, (they left out the Depakote & Indocin)& O2. Yesterday I got an Occipital Nerve Block. Dr. Mathew @ the Houston Headache Clinic took a 2" needle and jammed it into the nerve in the back of my skull. :o Well, that pretty much made me forget about my fricken h/a for the moment. Since the addition of the Lithium my h/a have come farther between and are less intense so I am not complaining. However I am really sleepy which I think is due to the drop in blood pressure from the Verapamil. What do you all think? Dr. M. also wants me to talk to a Neurosurgeon about a Trigemnial Rhizotomy to zap that damn nerve around the right orbit. I am not too thrilled about that so I am not going to be jumping into doing that one anytime soon. ???.... I did so much better when I was on Sansert as a preventative. Does anyone know where to get any? I heard that the manufacturer is no longer making it. Oh well, I am going back to bed.. ttfn Tracea |
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Title: Re: Hi all! I would like to introduce myself.... Post by jonny on Jun 8th, 2003, 12:07am on 06/07/03 at 15:25:58, TraceaTX wrote:
Ahhhh, Lithium and Verapamil cocktail...A combo sent by the Gods for me. You sure you should be on Verapamil?.....it lowers blood pressure. L&V love me and I love them!!!! ..........................jonny |
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Title: Re: Hi all! I would like to introduce myself.... Post by Live4Fun on Jun 8th, 2003, 11:01am Welcome Tracea! All too familiar with the diagnoses you went through at the beginning. But now you know what you have and you know you aren't alone. Welcome to the family... wish you didn't have to be here though! Sending PF thoughts your way! :) Bryan |
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Title: Re: Hi all! I would like to introduce myself.... Post by TraceaTX on Jun 8th, 2003, 3:02pm on 06/08/03 at 00:07:01, jonny wrote:
That is what dropped it for me...the doc increased the Verap from 180. At this point with all my other meds I am completely covered for Angina, heartattack, HPB, stroke, seizure, manic episodes, schizophrenia.....lovely. Tracea |
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Title: Re: Sansert Website Post by Hazelhig on Jun 13th, 2003, 7:43am I am going on over 3 months for this cluster period. I have been on verapamil, lithium and prednisone, all with little or no relief. My doctor has just prescribed sansert for me. I have placed my order with canadameds.com. The medicine should be here in two weeks. Can you tell me about your experience with sansert? Hope the canadameds website can help you out. Bobby |
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Title: Re: Hi all! I would like to introduce myself.... Post by Svenn on Jun 13th, 2003, 7:58am Hi there TraceaTX Welcome to Clusterville You will find a lot of friends here and a lot of info. Here is my coctail when i fight the devil Verapamil Retard 120mgX5-7/daily during cycle 3 weeks after last hit tapering down with 1 verap every 3/4 days until you are on 1 a day.1 a day for another 2 weeks you can decide to quit the verap or take 1 a day.Oxygene alone at 10ltm for 15 minutes or combined with imitrex-shots does miracles.The shots should start working in 6-9minutes.a few seconds after that you are almost painfree Prednisolone in high doze for 10 days 80mg then over a 3 weeks periode step down like 70-60-50-40-30-20-10-5mg every 3/4 day This work fine for me Maybe you can talk to your doc about this or what you find here The very best from Svenn from Norway |
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Title: Re: Hi all! I would like to introduce myself.... Post by stuey on Jun 13th, 2003, 11:55am Hi Tracea, I can't medically add anything but I hope some of the advice here works for you. Welcome and I hope your cycle ends soon. Stuey |
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