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Title: Gamma Knife Surg. Post by J._Hall on Oct 31st, 2003, 4:31pm Hello. I am a 4+ year sufferer (sp?) of "Daily Chronic Cluster Headaches" (i.e. I am not given the grace of a period of days/weeks/etc. of no pain). I am a 35 year old white male that smokes and drinks occassionally. But, for the record, I have given up smoking/drinking and a dozen other possible triggers for up to 60 days at a time with no change. I was recently (today) referred to a neuro-surgeon that talked to me about Gamma Knife Surg. I seek to: 1) Actually know others with my same condition 2) Receive feed-back from others in my position 3) Not feel like a freak any more. Thank you all in advance. Jeff Hall Atlanta, GA USA |
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Title: Re: Gamma Knife Surg. Post by Prense on Oct 31st, 2003, 4:49pm Welcome aboard Jeff, I cannot help you with any info on the surgery. However, what meds have you tried? I would assume that whatever you did try didn't work if you are at this point. There are numerous meds/combos used for CH. I have been a chronic sufferer for the last 10 years, but diagnosed three years ago. So far, nothing has worked for me as a preventative. Imitrex has worked excellently as an abortive and O2 has helped some. I have come no where near trying all the different preventative meds in my CH history. Until that is exhausted, I will not be considering surgery. Regards, Chris |
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Title: Re: Gamma Knife Surg. Post by J._Hall on Oct 31st, 2003, 4:52pm Chris, Wow, thank you for the super fast reply! This is a very good and much appreciated sign. I have tried/used the following: * Sansert - Most effective thus far (No longer being made) * Zoloft -- 200MG Daily * Fiortal / Fiorinal (1 cap. 3 times a day as needed) No effect * Nortriptyline 50Mb - Current 4 morning 4 evening (very sleepy, no major headaches 4 -5's only) shortness of breath - slurred speech - VERY dry mouth * Topamax 25Mb - 25Mb - No effect after two weeks of use * Verapamil SR / Calan SR -- 240Mb - No apparent effect * Neurontin 300Mb - 1 cap. 3 times a day - * Piroxicam 20mg - 1 cap daily * Indomethacin 50Mg - * Depakote 250Mb * Naproxen 500Mb * Serzone - 150Mg * Oxycontin * Codine * Lithium Carbonate 300Mb * Amitriptyline 50Mg * Ozygene Tank * Imitrix (spell?) Injection / Pill / Inhaler * Cafergot * Amitriptyline * Serzone * Zonegran * Neurontin 1600Mb 3x day Plus some I'm sure I've missed. Thanks, Jeff in Smyrna, GA |
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Title: Re: Gamma Knife Surg. Post by Prense on Oct 31st, 2003, 5:00pm Damn, that's quite a list! ;;D The only other thing I could think of is have you tried any of those in combination with another? For example...a few here combine lithium with verapamil, some toss in topamax with that. Even when the individual meds have no effect, the combination of those non-working meds sometimes get outstanding results. Also, an alternative can also be found here. www.clusterbusters.com One other thing...some of those doses seem a bit low to rule out. Specifically, some take verapamil at 960mg a day, topamax @ 100mg/day... Additionally, the release can make a huge difference. Seems most folks swear by verapamil in the immediate release form, whereas you were taking a low dosage in a sustained release form. Just some thoughts... Chris |
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Title: Re: Gamma Knife Surg. Post by J._Hall on Oct 31st, 2003, 5:21pm Chris, Thanks for the great advice. I will give my doc. a call first thing Monday morning. Cafergot (2 plus 1 each half hour) in combination with exced. mig. (over the counter) has thus far given me the best relief. Of course when I say "relief" I mean less than 1 hour of laying/rocking/banging in the dark while wishing God would just let me die and/or the devil would take me. I can't imagine Hell to be much worse than this. I have been lucky to have a wife that believes she understands. Of course she cannot fully understand...but she has been incredible. Jeff |
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Title: Re: Gamma Knife Surg. Post by tommyD on Oct 31st, 2003, 5:35pm No experience, but there are many tales of horror and woe about the gamma knife surgery in the archives of this board. It 's usually a treatment of last resort, and now new kinds of surgery and implants are better treatments of last resort. Another combo is prednisone/verapamil, where you take the prednisone (side effects can be bad) only until the verapamil kicks in. It sounds like you need another neuro. The clusterbuster treatment (indole ring hallucinogens - psilocybin and LSD) works very well. It's illegal in most countries, and you may have to stop other medications first, but results can be amazing... and only a small dose is needed so the trip is minimal...about like a two-beer buzz. No neuro needed. -tommyD |
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Title: Re: Gamma Knife Surg. Post by J._Hall on Oct 31st, 2003, 5:39pm Tommy, Wow, I will clearly have to do some more research on the Gamma thing. But I am truly at the point of taking extreme steps ONE WAY OR ANOTHER to end this misery for me...and my wife (who suffers with me in a way I cannot imagine just as she cannot imagine my pain). Thanks, Jeff |
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Title: Re: Gamma Knife Surg. Post by Karla on Oct 31st, 2003, 7:43pm on 10/31/03 at 16:52:43, J._Hall wrote:
I couldn't help but notice that your doseage was very low on these medicines. I tried Topamax at dosages that were at 25mg incriments all the way up to 600mg total a day. No effect for me. Verapamil I took at 600 and some mg /day No effect for me. Indomethacin I took 50mg 3x/day for 5 months and was pain free and then the beast took over again. Lithium I took 900mg a day. It cut my ha down from 8/day to 4/day and made my 10's 5's. Much more manageable. It worked for a couple of years and then the beast took over again and the lithium lost its effectivness. You may want to find a specialist who knows a bit more about these medicines and the treatment of ch and try a couple of these meds again only at higher doses. You may find something that then works for you. |
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Title: Re: Gamma Knife Surg. Post by thomas on Oct 31st, 2003, 8:47pm There are a few firm believers in using mushrooms on this board, I would try that before surgery. |
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Title: Re: Gamma Knife Surg. Post by Unsolved on Nov 1st, 2003, 1:23am I agree with the rest ... those dosages are low ... and I would try something a little less permanent first ... like perhaps nerve blocks. (Occipital, Facet, or the Sphenopalatine block). Gamma Knife still sounds dangerous to me since nerves WILL be destroyed ! Unsolved |
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Title: Re: Gamma Knife Surg. Post by Jackie on Nov 1st, 2003, 8:38am Hi Jeff, My husband, Blake, is a chronic clusterhead. His list of meds. looks like yours. It has taken 16 years but we have finally landed on a good combination. He's taking 900mg lithium, 720mg Verapamil (instant release) and 150mg Topomax. I agree with the others that your dosages seem very low. Perhaps you could speak with your doctor about increasing these and trying different combinations. We have not tried the 'alternative treatment' but many have with good success.....some however with no success. Such is the nature of the 'beast'. As to the Gamma Knife.....I've never heard of much success with the procedure. Often times the CH returns worse than before or the CH switches sides. The risks have never seemed worth it to us. Good luck to you, Jeff. Please tell your wife we have a good support group here. Extend our invitation to her to join. Jacks 8) |
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Title: Re: Gamma Knife Surg. Post by Svenn on Nov 2nd, 2003, 6:12am Hi there amigo First of all my advice is STAY AWAY FROM THE GAMMAKNIFE. Have a buddy here in Norway that did that surgery and got worse after then before Then i see that you have tried a lot of great meds for us clusterheads The question is that if you have found the right coctail among those. Last but least i`ll take the liberty to add my coctail that has helped me a LOT Verapamil Retard 120mgX5-7/daily during cycle Oxygene alone at 10ltm for at least 15 minutes on a nonbreathermask 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 60-40-30-20-10-5mg every 3dh day Tapering down the verap im on full dozage 7 days after my last hit,then over the next 5 weeks im down to 1/daily. after 1 week on Verap retard 120mgX1 and still no hits i can quit that to Check Elaine`s thread in generalpost on the subject Take care friend The best from Svenn |
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Title: Re: Gamma Knife Surg. Post by forgetfulnot on Nov 2nd, 2003, 6:25pm J. Hall, a guy named Harty posted this reciently. Quote:
[quote][/quote] "Lee, My Email address is hart4083@bellsouth.net I am 53 , had CH since age 29,live in atlanta now,originally from Annapolis MD., work in Insurance industry. If you,ve ever read the profile for ch sufferers it's me...6ft 3, slender, brown hair ,green eyes,responsible job,smoker,social drinker. Had the procedure done at Piedmont Hospital in Atlanta. Only 2 surgeons with this experience in Atlanta. I had heard about the possible paralysis and speech side effects about 6 years ago but multiple doctors told me they have perfected the targeting of theeffected area so much that these complications are no longer a problem. Only side effect now is some very small and minor numbess. I had about a one inch diameter spot of numbness on top of my head but that' s no bother at all. Currently that is the only known complication. I certainly did not mean that everyone should not run out and get this done right away and I know 3 months is no gauge for total success but my results were so drastic that I could not wait to tell others that there is a procedure that worked for what several doctors have described to be the most hopeless case of CH they've seen. Most doctors wont consider the surgery until they've exhausted all other non-invasive remedies. If you'd like to know more just write. " Lee |
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Title: Re: Gamma Knife Surg. Post by CLSTRHTR on Nov 6th, 2003, 8:23am Jeff, I have fought the beast for 30 years now. As for the Gamma Knife Surgery, I believe this is more for brain surgery. My mother, age 72 just went through Gamma surgery in Albuquerque and had five brain surgeries prior, including major decompression and Tic nerve touchups. If as a cluster sufferer I could gain an end-all surgery to my pain, I would jump on it in a heartbeat. No matter the cost. There are a few sites out there that can better explain the Gamma routine, but I think we CH folks are stuck with current technology and meds. Good Luck! |
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Title: Re: Gamma Knife Surg. Post by Len_Rogers on Nov 25th, 2003, 7:06pm Jeff: Hold everything!!!!!!!!! Judging from the list of med's, and from your picture, your been "round the bend" a few times in trying to tame this beast, much like myself, at your age. I'm 61 now, (had them all my life,) and very fortunately asked an ENT doctor if it might be related to allergies. His direct reply, no, and his certain evaluation of the cause immediately caught my attention: "it's usually related to bone spurs in the nose". He did an in depth exploration and confirmed it, much to my surprise. (And, much to my surprise, he was right: minor surgery, a year or 2 ago, and the clusters ceased!!) My fear for you is excessive medication, or misguided surgery. A brain surgeon, back in the '60's, wanted to surgically diconnect the (nerves of) the hystemines: at that young age, I reneged. I'm glad I did. The trouble wasn't "in my head"-- it was in my nose!! Bone spurs, sprouting from the skull, I guess, had grown into the nasal cavities: after (very minor) surgery, the cluster (and clusterS!) immediately stopped-- and has not been back, even through several severe "allergy seasons"-- which had frequently coincided with clusters. I know nothing of Gamma Knife, so can't comment, but hope this helps you. Please email direct if you have more questions!! Len Rogers Connecticut rrogersjr@ft.newyorklife.com |
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Title: Re: Gamma Knife Surg. Post by ave on Nov 30th, 2003, 6:37am . Lwen Riogers, will you stop pushing unnecessary surgery at sufferers? You have in your first post about this, and in your replies in that thread, not proved anything about its efficacity. You have NOT read replies to your arguments and have given replies yourself that are widely beside the pioint. I agree that all of us are not doctors, just co-sufferers. BUT: Surgery is irrevocable. And getting people to try non-proven and badly argumented surgical procedures for CH is downright irresponsible. |
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