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Topic: ANY NEW TREATMENTS OUT THERE?? (Read 994 times) |
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Luanne
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ANY NEW TREATMENTS OUT THERE??
« on: Jan 2nd, 2004, 9:22pm » |
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I haven't posted in about a year, going through my own private hell with these beasts!
I've been able to keep them in check using various combos of Norco, Nubain& Phenergan, Rox IM injections. Roxicodone.
I have tried just about everything out there and then some!! My neurologist has really been pushing the "Gamma Knife Surgery on the Occipital Branch of the Trigeminal. I don't know much about this and I'm not sure I'm ready to reach that point.
He has also requested I see a Dr. Jean Claude Krusz in Dallas, Texas for a second opinion.
I am searching here for any and all information any of you might be so kind to offer. Thanks!
Luanne
P.S. The Clusters have been chronic/daily and quite severe since July 3, 1998. Sometimes I wonder how I have survived this long! Thanks again!
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BlueMeanie
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Re: ANY NEW TREATMENTS OUT THERE??
« Reply #1 on: Jan 3rd, 2004, 1:53am » |
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Luanne,
Sorry to hear such a long time with CH's. From what i've read over the last couple months here, it seems that if your chronic, the only way to break the cycle is the shrooms. You may want to check out their post. Those guys are very thorough and will help you attmept to break the cycle. The only other option i've read that may work is the DHE IV.
Good luck to you. Maybe the Neuro's will come up with something.
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TxBasslady
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Re: ANY NEW TREATMENTS OUT THERE??
« Reply #2 on: Jan 3rd, 2004, 2:27am » |
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It sounds like you are taking narcotic pain meds at the present time. You won't find many here that have had ANY luck with those kind of meds.
Guess if you have tried everything though, I suppose I understand it.
I had very good luck when my doc put me on a Prednisone taper. Doesn't work for everyone.....but it worked for me. For some, when they finish the taper, the ha's return. I have been pf for 116 days, with no return of the ha's.
Blue is right........check out the shrooms......they have been successful for alot of folks here.
Let us know how you are doing......
PF vibes,
Jean
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Flounder
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Re: ANY NEW TREATMENTS OUT THERE??
« Reply #3 on: Jan 3rd, 2004, 11:52am » |
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Check out the posts on psilocybin.
Read this site.
www.clusterbusters.com
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| « Last Edit: Jan 3rd, 2004, 5:10pm by Flounder » |
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notseinfeld
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Re: ANY NEW TREATMENTS OUT THERE??
« Reply #4 on: Jan 3rd, 2004, 12:44pm » |
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Luanne, as a fellow chronic I'm one of the few, the proud, who actually can related with your current 'life' as it is.
My recommendation is, in this order--
1. Prednisone. 10 day taper. This corticosteroid is usually a terrific breather that'll help you at least think clearly while the headaches are at bay. This would be a good time to plan your next strategy in dealing.
2. Shrooms. Indeed they are magical and in the case of CH salubrious as well. There's no neurologist in the world that'd recommend them as it's clearly outside the scope of their pharmaceutical repository. Surely, surely, surely worth a try. There's a ton of research and other's experiences at clusterbusters.com. Read up.
3. Gamma Knife. It's not really a knife! It's just focused radiation that will make a lesion in the upper branch of the trigeminal that will, in essence, cause a chasm in the transmission of pain. I know 2 people that have had this done. The first one went off all meds and is pain free after 25 years of suffering. (don't know how he made it that long frankly). And another friend who posted on this board named Jeff had his done about a month ago. Apparently it takes UP TO 90 days after treatment for the process to 'take hold'. He's on week 4 and has noticed some positive changes already though admittedly not out of the woods yet. I'm keeping a close eye on him and undoubtedly he'll post with an update.
Hope this helps you and don't underestimate the power of concerned people here on this site! Support groups are just that---Support. No need to stay away for a year, gal.
nots
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Bob_Johnson
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Re: ANY NEW TREATMENTS OUT THERE??
« Reply #5 on: Jan 3rd, 2004, 4:31pm » |
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If it's a year, you may have missed this one. I've had 100% success within 20-minutes using it.
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1: Headache 2001 Sep;41( :813-6
Olanzapine as an Abortive Agent for Cluster Headache.
Rozen TD.
Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.
OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. The initial olanzapine dose was 5 mg, and the dose was increased to 10 mg if there was no pain relief. The dosage was decreased to 2.5 mg if the 5-mg dose was effective but caused adverse effects. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and two patients became headache-free after taking the drug. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. It alleviates pain quickly and has a consistent response across multiple treated attacks. It appears to work in both episodic and chronic cluster headache.
------------------------------------------------------------------------ --------
Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
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Bob Johnson
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jflynn
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Melatonin maybe your answer
« Reply #6 on: Jan 5th, 2004, 10:03am » |
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Read the varioous threads here. It's cheap, OTC, seemingly harmless and easy enough to try. It works great for some, not at all for others but at least is worth a try. It's changed my life and worked for others.
I live in Dallas and the best headache doctor here bar none is Dr. Richard Black. About a 3 month wait to see him. The guy you listed is also well-regarded but not the genius Black is from what I've heard.
But ... a $5 bottle of melatonin may well be all you need. You're crazy to not at least give it serious consideration.
Opiods work well for me also but address the symptoms, not the cause. I found effervescent codeine works the best (basically Alka-Seltzer with codeine) and are very fast.
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Unsolved
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I'm still alive ?
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Re: ANY NEW TREATMENTS OUT THERE??
« Reply #7 on: Jan 8th, 2004, 11:16am » |
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Olanzapine is Zyprexa. It is an antipsychotic medication used to treat schizophrenia (and now clusters). I have alot of information on this drug but the one thing I wanted to point out is:
This drug may cause TD (Tardive Dyskinesia) after prolonged use or following discontinuation of long term therapy. TD is characterized by involuntary movements of the mouth, tongue, face, or jaw. Involuntary movements of the extremeties and spine may also occur. The risk is greater in older women and those with brain injury. The symptoms are persistant and do not always disappear when the drug is discontinued.
The risk of developing TD is low but physicians are now requiring the patient to sign papers stating that they understand these risks and are accepting the risk.
The above info comes from MHNI.
Unsolved
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