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Cluster Headache Help and Support >> Medications,  Treatments,  Therapies >> A must read for CCH sufferers.
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Message started by Hoppy on Feb 1st, 2014 at 5:11pm

Title: A must read for CCH sufferers.
Post by Hoppy on Feb 1st, 2014 at 5:11pm
Ketamine Trial for Cluster Headache.





Ketamine Trial- Initial results:

I am very happy to report that the initial outcomes of my one week ketamine infusion therapy are very positive. I remain absolutely pain free and for a long-term and medically intractable chronic cluster headache sufferer, that is a huge leap forward. It has only been a short while now, but I have not been completely pain free for several years.

The advantages of ketamine in chronic pain treatment are many. Ketamine gained an unflattering reputation as a street drug that curtailed it’s use medically for some time, but it is a highly effective analgesic and anesthetic used in human and animal therapy that is well tested and FDA approved for safety and efficacy. It’s disassociative properties actually work extremely well for regional neuropathic pain syndromes when used as an infusion over an extended period (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE, 2013).

The great thing about this trial is that it was truly a team effort, working closely with both the neurology team from the Jefferson Headache Center as well as the Pain Management Center team from the Jefferson Pain Management Center. Each day, we discussed the approach, therapy levels, and augmentation with other medications to break ongoing break-through pain events. At one point, I suggested adding medical marijuana as an adjunct to ease side effects and in order to increase dosage, and we were able to use diazepam instead. It worked a charm and we were able to reach a treatment level of 90% ketamine ml/hr dosing. The ramp down was fast and by the time I was able to leave the hospital entirely side-effect free and absolutely pain free.

This is an exciting event and a leap forward in treatment options for medically intractable cluster headache. I am excited to report that CHSG will be working with the Jefferson teams to perfect the protocol for reuse. We will also hopefully get this in front of pharma in the near term, leveraging proven medications in combination, and likely leveraging our recent adoption as an Orphan Drug through our work with NORD.

It’s an exciting step forward toward pain free living for cluster sufferers.

Update on Ketamine Infusion.

It has been a full 3 months since my ketamine infusion and I remain largely pain free. I say largely because I havr experienced a few attacks, all triggered by known triggers for me (hair spray, candle scent, perfume, and alcohol). However, other than that having 3 full months pain free has been nothing short of miraculous for this chronic intractable sufferer.

The key elements of the infusiom therapy are as follows:
- at least 5 days infusion in hospital
- reaching 90% ketamine at 3 ml/hr
- adding an antihypertensive med to keep blood pressure normal
- a sedating medication to level out side effects (hallucinations)

these are the basics of the protocol at this point. We are continuing to work with Jefferson Headache Center on outcomes.

Very promising results so far!

Great news regarding progress with ketamine infusion therapy for CH. In my most recent meeting with Jefferson Headache Center, they are actively enrolling people in the evaluation and recently completed the therapy for one other person with very positive results. We (CHSG) will continue to work with Jefferson in developing a repeatable protocol and they have committed to publishing at least two clinical reports on outcomes of the trial! I am hoping more people are enrolled soon, and we have been helping with suggested candidates in the Philly area. I am hopeful that within a few months we will have the final protocol and results data published and ready for broader use. For me so far, still completely cluster headache free! That's saying quite a bit for a medication resistant chronic sufferer like me. Absolutely fabulous working with Jefferson to bring this preventive / possible CURE to more sufferers!




Title: Re: A must read for CCH sufferers.
Post by lwatson8 on Feb 3rd, 2014 at 4:15pm
Hoppy,

Thanks for the post as it is always better to have an option as to not have one. I have no illusion that this will be available in the states any time soon. It is wonderful that you have gotten relief from this protocol. As a CCHer for whom meds have not eliminated CHs, my options are D-3 that has been partially successful. Fortunately the lithium has decreased the severity to a low level. Again, Congratulations!

Lars

Title: Re: A must read for CCH sufferers.
Post by wimsey1 on Feb 5th, 2014 at 9:50am
I believe it is Ricardo who has discussed ketamine before. I have mixed emotions about this post, primarily stemming from a full mistrust of narcotics for any extended period. To be clear, I am chronic, and can have as many as 12 attacks per day/night for weeks on end. At the worst times I would consider anything to stop the pain. But I believe I am at the far end of the CH spectrum. I would not encourage new episodics, or even veteran episodics, to explore such an avenue without exhausting absolutely everything else. And we know many people glom onto one "solution" and do not try other preventatives or abortives. Just my thoughts. lance

Title: Re: A must read for CCH sufferers.
Post by CH Brain on Feb 13th, 2014 at 7:46pm
Credit to the source, as lifted from the Original Poster (OP) on Facebook:

10th November 2013:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

The OP:


Quote:
Regards.
-Chris Hannah
President, CHSG, Inc.



Title: Re: A must read for CCH sufferers.
Post by Hoppy on Feb 14th, 2014 at 3:16pm
Hi Lars,
I'm a walking "confusionist".Is that a word lol.This person
isn't me. But, i'll keep you posted on any updates.

We are continuing to work with Jefferson Headache Center on ketamine infusion therapy for cluster headache; however, it will take a while to complete the research and publish the results. Based on my own experience as a chronic intractable sufferer who went completely pain free, and I remain that way after 3 full months, I recommend that you look into it now. It is not a new treatment, and it is well understood by the medical community and regulators as a viable, effective and safe treatment. Research ketamine therapy for CRPS, RDS, and Phantom Limb Syndrome and you will find similar stories of success, along with several locations who are able to provide this therapy today. It's a week in the hospital and for it, it's like my CH was surgically removed, completely, shadows and all. Don't confuse this with street drugs or K holes or induced coma, etc. It's a simple infusion procedure where you remain conscious, although tripping for a few days in a hospital setting.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

Title: Re: A must read for CCH sufferers.
Post by CH Brain on Feb 17th, 2014 at 6:35am

Quote:
This person isn't me.


Credit to the source:

Once again, a post lifted from
Quote:
" -Chris Hannah President, CHSG, Inc."


Originating source:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

When posts from other sites are selectively lifted, posted here and the original poster or "Author" not credited for their ideas, this can lead to the kind of confusion seen in this thread.

If the President of CHSG wanted to post their thoughts here (maybe they do), I'm sure they would be very welcome. I can empathise with the CHSG president, having had my ideas from the Oz CH site extensively plagiarised here before...

I provide supporting links to published Journals and publications, in the public domain. There is a clear distinction made between my own opinion and thoughts and those of others more informed and qualified, whose ideas appear in publications, or on other websites.

I always quote directly, using the "quote" feature on this site. To maintain the integrity of the original poster, their ideas and their work, I think the originator(s) of the work should be credited fully and links provided to the source.

Scientists, Patients and organisations that put in the hard work, do the clinical trials and participate in the pioneering work going on in headache research should be correctly credited for their immense and helpful input.

Hoppy, drag that cursor a little further down the page before you cut & paste. Give people some credit for their ideas. Not attacking the person, just defending their ideas.

My 2 cents on crediting Authors for their ideas.

Cheers, Ben.

Title: Re: A must read for CCH sufferers.
Post by Hoppy on Feb 17th, 2014 at 8:31pm
I'm not here to advertise other facebook CH sites, i'm here
to help other clusterheads where i can.

Hoppy.

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