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brs82
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This current cycle is my worst to date. I've had clusters for 21 years now, but they seem to get worst with every cycle. This cycle has my worried , I'm totally dibilatated right now . I was on high amounts of steroids for 3 months with no response , immitrex has stopped working, nerve blocks work for about a day, DHE infusions didn't work , oxygen didn't help either. I'm currently take depakote and verapamil daily.  I have attacks at times that last for 10-12 hours . This cycle is going on 5 months, and its about all I can take. Looking for any advice at all thanks in advance. 

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Very sorry to read this, brs'.   The only substantive suggestions I can make are (1) to start the vitamin D3 regimen ASAP (http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708); (2) to be sure that your oxygen system is optimized (at least 25 lpm flow rate and the "ClusterO2 Kit" mask that is designed specifically for CH); (3) perhaps to try melatonin at night, starting at about 9mg and working up as needed); (4) to try Benadryl 25mg 3 times a day and 50mg at night (probably not taking both Benadryl and melatonin at night). Severe CH outbreaks seem to sometimes be associated with allergies, even if you're not aware of those allergies; and (5) try an energy shot such as 5-Hour Energy at the first sign of an attack.

#3 - #5 seem so trivial in the face of what you are dealing with that I have been hesitant to bring them up, but it's what I can think of.  Wish I had more, and I hope others will.

Do you think it's possible that you have developed another kind of "headache"?  It's so rare that none of the standard things are working -- Imitrex, steroids, O2, etc.  There is the CH "lookalike" condition, hemicrania, that is not usually successfully treated with those things but is responsive to the drug indomethacin.  That might be worth looking into.  There have been people here who have both CH and some form of hemicrania.

I hope things get better for you soon, and again I'm sorry to not have more to offer.  The D3 regimen has been very effective for many people, and the fellow who formulated that regimen, Batch, is a great guy who would be completely willing to help you with doing it.

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Agreeing with CHfather 100%. All of the things he mentioned have helped me out a little, add them all together and you have a manageable day. 

I take Verapamil at a low dose of 160 twice a day now, the vitamin D3, benadryl at 25mg 3 times a day drink lots of water and down a 5hr drink on my way to the O2 tank and take 20mg of melatonin before I go to bed. Sometimes sleeping in a recliner. I went from about 10 hits a day down to 1 or 2 a day. I then added busting cycle every 5 days and am now down to 1 or 2 hits a week. 

Other things people try are drinking ice cold drink with a straw pointed at the roof of your mouth on the cluster side, chewing fresh ginger and putting your feed in very hot water. 

You may of had a way that worked on your last cycle and need to tweak it a little. with all the mentioned things on this site you can hopefully mix up a system that works best for you and when you find that please share your story, it may help someone else. 

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To me, this sounds like a cluster that has been boosted into a whole new level with the help of prescription medication - steroids and triptans (Imitrex) being absolutely two of the worst. They are like fuel for the fire in the long run. For some it happens in few years and for some it takes a decade or more - regular use of either one, both together being the faster route. I have almost exactly similar personal experience and nowadays these kind of patients arrive to our finnish group almost weekly. For some of us, steroid&triptan combination is able to make oxygen work less efficiently at first and if the use is continued lead to oxygen not working at all. Triptans not touching a hit at all is very rare but it is doable with steroids but at this point you usually are receiving them intravenously or you have done too many high dose courses for one lifetime. At my IV time nothing touched my hits anymore. Depakote and verapamil obviously are not helping here, first being able to screw up your brain more and verapamil obviously useless since it's a preventative. 

Because this does not happen to all of us, not even all who regularly overmedicate with the two, it's not always though of and even questioned at. It's certainly a possibility to be considered when there's a pattern. What I personally don't get is how doctors systematically miss this; in my country the most usual way to neglect this is to say some cluster headaches transform this way - which is not the case. It should jump right out of those patient files reading 5 years back for an example.

I hope this is not the case and it's just a really evil cycle. But if you see a pattern going steadily worse cycle after cycle this is probably it. Not many things one can do but to detox to a point that oxygen begins to work again. After detox anything you will do (Anti-inflammatory regimen) will be more effective than they would be when on prescriptions (when they are the cause for things going worse). I can't but wish you all the best and I hope you feel you are somehow able to detox and find better routes, busting, Vitamin D, Herbal protocol.

Edited by Tony Only
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45 minutes ago, FunTimes said:

chewing fresh ginger

Among his thoughtful and excellent suggestions, F'T' made that one about ginger.  I'd be surprised if people chew fresh ginger -- but maybe they do.  I'd love to be corrected.  I'm most familiar with suggestions for strong candies that are made from real ginger (The Ginger People make some), candied ginger (with a sugary coating), or ginger tea made from fresh ginger.  Although these are typically more recommended for shadows, there are people who have gotten some abortive benefit from them for attacks.

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Thank all of you for the helpful advice, information, and definitely the encouragement. Their was a few things mentioned here today that I'll definitely check into. I have tried MM several times and seeds twice  , that option is still on the table but would be my last resort. 

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Hi brs...some thoughts...

I also second what CHf  and Fun Times said...

My initial thought was "needs a headache specialist"....but with the treatments you describe it sounds like you already have one. Has he or she discussed the possibility of a headache form other than (or in ADDITION to)  CH....like the hemicrania continua CHf pondered?  Have you tried indomethacin to at least rule that out?

Re O2. What flow? (15-25 LPM recommended)….what mask (must be a non-rebreather or direct mouth to mouthpiece)? What technique (breath and hold or hyperventilation)? When started (first sign of a hit)...for how long....do you continue for at least 5 min after hit fades?

What dose of verapamil....what form (immediate release (IR) or extended(ER))? Has your Doc tried upping that?  In peak cycle I was at over 1000 mg/dy ….at low cycle 480/dy.  480/dy  of IR is reported "sweet spot" for many. Timing dosing to expected hit times was somewhat successful for me.

Both verapamil and Imitrex have been reported to negatively affect cycles for some folks...either lengthening and/or causing rebounds. Personally hadn't heard that for steroids...but could be... and it can produce some really nasty side effects, so is generally used in a taper and/or IV to break a cycle while a prevent med kicks in (10-14 dys). Since it's not working for you anyway... ...I'd drop that one like a sh**ty diaper....3 months is too long for CH.

What form of Imitrex...injection or oral (usually worthless as an abort)? Have you tried other types? I have great success with Zomig 5 mg NS with minimal side effects, no rebounds...might be worth a try. Come to think of it, in your situation, an oral form (there are several kinds other than Imi) may give some preventive relief.

Can't comment on busting other than:  you are in exactly the right place to learn about that....and it is especially important to be off certain other meds (listed in files section)before trying.

Ooops...forgot to add... Tony has some really good points.... and based on the failure of all the meds you listed... it might be in your best interest to taper off all of 'em!  Did that once myself for 7 years (as have others)....O2, energy drinks and maybe D3 got me through. Kinda a reboot startover….doesn't seem ya got much to lose....

Best

Jon

 

 

Edited by jon019
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Hi Jon, thanks for the response. As I'm still trying to decide my next moves, here is some extra info . As for the 02 I have a regulator that goes up to 25 lpm, a non re breather mask that I purchased from the cluster website. I take instant release verapamil 80mg 4 times a day =320mg. Immitrex is injectable  , zomig nasal actually ramps it up . And I also took indomethacin for over a year previously. Even lidocaine nasal seems to ramp it up and make it worse. Thanks again for listening 

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10 hours ago, brs82 said:

I have tried MM several times and seeds twice  , that option is still on the table but would be my last resort. 

This left me puzzled, what happened that made you go back to pharmaceuticals ? Tryptamines (MM) will abort this kind of situation but there's a detox from everything that is blocking, anything that might be even interfering and even then it can be hard with pharma background. Those who have had the certain drugs on a long term use may need additional tryptamine or cycling of tryptamines LSA-psilocybin-LSD but if this is done right, on a prescription medication body I can not imagine going back from that. I am just wondering why. If you do these with blockers in your system, you will still get the psychedelic effects but no response to cluster headaches. If you are able to detox to medication free, you can do subhallucinogenic doses if the effects are unpleasant.

Again, in our finnish group there has never been such amount of busting not done right than in the last few years. Probably because many will not discuss what they are about to do (laws) to have others help if treatment response is not what it should be - which is absolutely terminating clusters. Tryptamines are not just an addition one can throw in, you absolutely must know what you are doing and how to have those receptors free for healing molecules. I am sorry I don't have the skill to write in encouraging way, I see a bad situation and jump right in being very solution orientated.

Edited by Tony Only
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8 hours ago, jon019 said:

Both verapamil and Imitrex have been reported to negatively affect cycles for some folks...either lengthening and/or causing rebounds. Personally hadn't heard that for steroids...but could be... and it can produce some really nasty side effects, so is generally used in a taper and/or IV to break a cycle while a prevent med kicks in (10-14 dys). Since it's not working for you anyway... ...I'd drop that one like a sh**ty diaper....3 months is too long for CH.

I have been administering the finnish group now for 6 years, I would say steroids are the most potent to affect negatively on cluster headache cycle length and via that to status; most episodics that go chronics do way more steroids than anyone should (if you consult GPs) - if you are in that group that medication will transform your condition in the long run. On steroids it would mean annual use or several courses inside the same calendar year. Many self-medicate using it non stop. When the regular steroid response is gone, adrenal cortex might not be working anymore (which should be kept eye on anyway if on steroids) and the last option is IV steroids. In a large group it's fairly easy to do comparisons or questionnaires on cycle lengths among people who have never touched a cycle with steroids and those that do regularly and only one of those groups has extending cycles. 

Same deal with triptans (Imitrex) - they are not this dangerous to everybody but for some. But they usually bring additional attacks and intensify the ones happening. But since triptan molecule is around your receptor for days, it is doable to keep the cycle neverending with them as well. Verapamil probably affects least to the condition itself in a bad way. Yeah, I remember when it was thought to be one of the worst. Still many people account it for making them chronic.

Patients descriptions about this phenomenon should be recorded somewhere. To me at least, it happening for some is equally destructive on quality of life than cluster headache itself. It doubles the misery.

'There's probably zero scientific data on this.

Edited by Tony Only
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6 hours ago, Tony Only said:

 

When I first tried shrooms things were alot different , for one the oxygen was working so it was fairly easy to detox. Another reason I say it's my last resort I have a family now  , and a 3 year old daughter. If things were like they were back then I wouldn't bat an eye. As a matter of fact I have plenty in my freezer . It's just kind of a nervous experience for me and causes way to much anxiety. With that being said I'm coming of a 3 year run of pain free, I had forgot how bad it could get. So that tells me before now I was episodic  , I just fear I've turned chronic as I'm now entering 5 months into this cycle. If I could just break this cycle so I could get back to myself again. 

Thanks Brandon 

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I can totally relate to this. I have PTSD and pretty severe trauma background and for me, every "trip" for cluster treatment I won't be expecting anything good - so the set & setting is way off. I can't do mushrooms on the normal doses pretty much at all. For me who prefers not "to go there" but still needs to treat clusters, LSA is a good option. Or a bad option, since it's no "fun" - mostly nausea but there are almost no psychedelic effects. There's always kind of a pressure present in my life because of the need to prevent with something I am super uncomfortable with but if I don't, facing cycle is way worse. That's a tough spot you are on. BOL would be a life saver for guys like us.

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