For those of you that don't remember me, I was episodic for a few years, chronic for almost 4, and then had the great luck of going into remission.  And when I say remission, they never went away completely but I only had minor shadows, nothing over a KIP4 unless I screwed up and ate something I was allergic to.

I was so happy about it I decided to leave my insurance analyst position and go into neuroscience.  Being aware that CH would probably morph eventually and not wanting to end up disabled with $300K in medical school debt I decided to first go into nursing and then work my way through, or maybe do a few years of travel nursing first and save up, then pay cash for medical school.  I found a great job in a hospital that will pay for nursing school and even graduate (medical school) if you agree to work for them for a certain number of years.

Everything was going well until one night in November when a feverish violent patient escaped his restraints and assaulted me.  I ended up with bone bruises to my face, a severe concussion, and the return of KIP-10's within a few hours.

At first they were limited to a few times a day, but the longer this has gone on the worse things have gotten.  For the last few days the hits have been almost nonstop (45 minutes on, 45 minutes off; all KIP-8's & above).

I'm exhausted and over emotional.  Nothing works for me really except Lortab 10 (disclaimer for newbies: narcotics don't work for most and should be an absolute last resort. If you've been chronic for less than 3 years there's no way you've had time to try everything else first). 

The last time things were this bad in less than a week I started getting suicidal in between hits and not just during them.  At that point my neuro suggested I switch to methadone (she said it was safer due to no tylenol) and wait for surgeries to improve.  That, quite frankly, scared the hell out of me and I refused. 

I don't even take Lortab unless I need a psychological break from the pain because 1) I don't want to develop a tolerance that would mean it would stop working entirely and 2) even though I've never been addicted to anything but sugar, addiction is a very real thing on both sides of my family so I'm sure I have a higher capacity than most to develop a dependence.

My neuro wants to do some IV protocol from someone named Dr Kineke, something with benadryl, toradol, and compazine or reglan.  I'm open to trying anything at this point but I haven't been able to get insurance to cover it or get the funds together. 

I don't even know why I'm posting this, I'm just so frustrated.

I guess I want to know- for chronics who've gone into remission and then had them return,  did you manage to go back into remission?  Did something help you to go back into remission?  Or do I need to adjust my expectations and accept that these are likely back, probably for years?

Sometimes I think that dashed hopes about getting better are more difficult to deal with than the actual CH.  I had so many plans for things I wanted to accomplish, and at this point I may never get to do any of them.

In some ways a relapse is easier than the first time around because I know more about what kind of pain I have to deal with.  In other ways it's harder.

I am episodic, not chronic, so I cannot answer or directly help, but you were the one person who respected my wishes in my thread about my problems and I wish you all my best!

I was sure that I had found more material than this--but it looks like memory isn't to be trusted! You might look up the article since this is the only content of the PubMed citation.
--
Sprenger T, Seifert CL, Miederer M, Valet M, Tölle TR. Successful prophylactic
treatment of chronic cluster headache with low-dose levomethadone. J Neurol. 2008
Nov;255(11):1832-3. Epub 2008 Aug 4. PubMed PMID: 19156493.
=====

The IV protocol struck me as something I'd expect for the treatment of migraine but, given your history, it's worth a trial.
===
My personal success has been with Zyprexa.

Headache 2001 Sep;41(8):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.

PMID 11576207 PubMed

--------------------------------------------------------------------------------

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.

O.K., went back to my old buddy, Robbins, and found this encouraging report:

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This site is worth exploring and he has a good book, written for M.D.s, which you might examine.

Katherinecm wrote on May 19^th, 2010 at 4:16am:

I guess I want to know- for chronics who've gone into remission and then had them return,  did you manage to go back into remission?  Did something help you to go back into remission?

I had changed to chonic about six years ago but last year had a two-month remission with daily shadows before needing the usual routine of preventative and oxygen again.  This year have been very gradually able to taper down the preventative to practically nothing with shadows.  Could be a sign of episodic again, but just take it day to day. 

Can't offer any reasons, I just decrease meds whenever possible and apply what works when the situation requires. 

The ten years prior to chronic, episodes were twice yearly, three to four months each.  This is new ground now, simply stable, so no news of how long, but can be encouraging.   :)

Just in case you haven't seen it yet Katherine, there are some incredibly severe chronics who have found tremendous relief and completely turned their lives around going the non toxic clusterbuster route.

I suppose you've seen the ubiquitous Newsweek article I post links to, so in lieu of that, AS A ONE TIME SPECIAL BONUS  :), here's a must see video on the subject that I just saw today courtesy of a link supplied by Bonkers:

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I have tried RC & HBWR seeds about a dozen times thinking I wasn't getting potent seeds but it didn't work for me.  Trying other clusterbusters treatments isn't really an option for me because when I'm this bad, I move in with my mom, who has a government job with a security clearance.  I'm originally from Florida where the legality of fresh mushrooms is a lot simpler, I've thought about making a trip & going for a walk in the woods simply for clusterbusting but the irony is that traveling and long hikes in the heat when I feel this bad is not really an option for me.

Yesterday I spent a small fortune at the local healthfood store on the Kilowatt3 regimen  (I know you can get those things for less than half the cost online and at some pharmacies, but in my 3 days without more than a few minutes of sleep state I wanted it fast).  I'd tried kudzu & melatonin each individually before and neither worked but the all of them together last night did seem to make a difference.

I slept through the night, almost 12 hours, and woke up a little drowsy  (I feel drugged like I did on topamax, without the wonky side effects).

I got a strong shadow less than 20 minutes after waking up, a redbull sugar free energy shot & the morning doses of the regimen seem to be keeping it in the Kip-5 range.

So.  It's a little too early to tell much but that's a major difference for only one night.  I was starting to get so despondent I was considering the ER.  It's amazing what a difference one night of sleep makes.

Thanks for all your posts Bob, I'll print all of those and look into them.

Katherinecm wrote on May 19^th, 2010 at 4:16am:

My neuro wants to do some IV protocol from someone named Dr Kineke, something with benadryl, toradol, and compazine or reglan.  I'm open to trying anything at this point but I haven't been able to get insurance to cover it or get the funds together.

This is a DHE treatment.  It's rough on the body but some folks here have gotten a break using it. 

Quote:

I don't even know why I'm posting this, I'm just so frustrated.

That's exactly why you should post.  And it's is a big part of why this board exists.  [smiley=hug.gif]

-Dennis-

Hi Katherine,

Well glad that you got that good night's sleep at least, and that you are dilligently going after all the non toxic stuff.

Kinda sux that it's so tough to be able to dose with mushrooms doesn't it? OK it doesn't "kinda" suck, it totally BLOZE!! >:( I understand your predicament there.

From the little I've seen so far regarding severe cases like yours, it does seem that the psilocybin can be be about the only non toxic preventative that can still offer powerful results, whereas the seeds don't necessarily offer so much promise (?)

You're clearly determined to beat this thing though, and my money says that you will.

DennisM1045 wrote on May 20^th, 2010 at 2:03pm:

This is a DHE treatment.  -Dennis-

Well I don't know why she would want to give me a DHE treatment, since I'm allergic and EVERYTHING I'm allergic to is a trigger.

bejeeber wrote on May 20^th, 2010 at 2:14pm:

Hi Katherine, Well glad that you got that good night's sleep at least, and that you are dilligently going after all the non toxic stuff. Kinda sux that it's so tough to be able to dose with mushrooms doesn't it? OK it doesn't "kinda" suck, it totally BLOZE!! >:( I understand your predicament there. From the little I've seen so far regarding severe cases like yours, it does seem that the psilocybin can be be about the only non toxic preventative that can still offer powerful results, whereas the seeds don't necessarily offer so much promise (?) You're clearly determined to beat this thing though, and my money says that you will.

Thanks.  I hope you're right.  Yeah, it only seemed to work the first night, so it may have been a fluke.

As for mushrooms,  I recently heard about how there's a loophole in the law in the British Virgin Islands- the only mushrooms that are illegal there are ones that don't naturally grow there.  Apparently there's a place on Apple Bay in Tortola called Bomba's Surf Shack (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE) where every full moon he has a full moon party and serves mushroom tea.  So I'm thinking THAT might be worth a trip to the Virgin Islands.