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MSDean

1st time on this board

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Hi fellow CH sufferers,

 I got diagnosed 8 years ago with Clusters by my neurologist, and after that bout I forgot all about them until about 1 1/2 months ago when the monster came back out of nowhere and decided to attack me again.  My neurologist has moved, so I went to a local NP who had no knowledge of CH's.  I told her what I had been prescribed before, Depakote and Prednisone, and Imitrex injections.  Suffice to say, this has not been helping much this time.  So I went to a real doctor who had some knowledge of CH's.  He gave me a higher dosage of Prednisone, started me on Verapimil, and for a week (while the steroids lasted) I was mostly headache free with only a couple of very minor ones.  Steroids are gone, CH's came back fierce, so doctor doesn't want to keep doing prednisone, and put me on a non-steroidal anti-inflammoratory called Toradan.... and still having CH's.  I came to these boards to see what or is there was anything out there to help with the pain, because it has reached my max pain threshold twice during this last 1 1/2 months and I have come close to putting an end to it all.  Insurance will only pay for Imitrex injections (2) every 9 days, leaving me 7 days of anxiety worrying about an attack without a shot at hand, I had to go the ER one night to get a shot even.

 Do you think there will ever be any help out there for people like us who suffer through this pain from hell???

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No OXYGEN?????  That's what you want and need most right now!!  https://clusterbusters.org/oxygen-information/

You can split your trex injections: https://clusterbusters.org/forums/topic/2446-extending-imitrex/

What's your verapamil dosage?  Some people don't see benefits until the 900-plus mg/day level.

Start the D3 regimen: https://clusterbusters.org/forums/topic/1308-d3-regimen/

Check for triggers:  https://clusterbusters.org/forums/topic/4568-triggers/

I don't think the Toradan is going to help you.

Some things to try: Drink an energy shot at the first sign of an attack (most people seem to prefer them very cold); take melatonin at night, starting with 9mg and working up if needed; when you're having an attack, get your feet into a bathtub of water that's as hot as you can stand.  All of these help some people.

Consider busting (see numbered files in the ClusterBuster Files section of this board).  It's been the only reliable source of long-term relief for many people.

Yes, there will be help some day.  Research is going on.  Not enough of it, by far, but some. Here's one example: https://clusterbusters.org/forums/topic/4711-14-years-in-the-making-psilocybin-clusters-enter-the-lab/#entry49962

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So ,Im am so new to this, I don't seem worthy of any opinion, but i have had enough CH to be in the club. Background on me, 4 years ago 2012 JUNE/JUly age 46 started getting these CH but didn't know What the F$$K was going on Brain Tumor? ETC... 

 

After talking to a friend that had suffered the same for a lot longer, I was checking all of the boxes for CH. Went to DR. got on all of the common meds , IMtrex,P-zone etc. (NO O2 ODD) any way had two or three bangers each day for 6 weeks and went away. not a sign of them from then (I never get a real traditional headache ever) BTW these CS's are not a headache in any way. I don't know what to call them but the worst headache couldn't hold a cup of water to this shit.

 

Moving on, its Nov 1st 2016 and as soon as i felt the pain in my right base of the nose i knew it was ON, shit. so back to the Dr i went and the same Rx;s given to me (still no O2, its been 4 weeks now, and this time 3 per day 2pm, 8pm, and exactly 2 hours after i fall asleep no mater what time i go to bed. 2 hours later its on!!!

 

 having enough of the pain and becoming a complete AH to my wife and family, i had my one of my offspring score the magic busting med.  Last Sunday two days ago i took the first installment .75g. have not had a CH from that time till now, i have been shadowing each day but i didnt detox from IMtrex so that could be why.

 

Im in my my 3rd day of IMterx detox now, and looking forward to my next installment of busting meds. Hope all will go well and i can put this to bed for a few years.

 

If all goes well, i will stay on this site as I'm sure it will be back some day.

 

I have very little hope in the Dr's today, thank you good people for driving the studies on the cure or prevention needed. 

If i had only one wish i would wish every person that has told you great people no in the past could have 3 days of CH 3 per day and then tell you NO???

 

Thanks for letting me rant, i am looking forward to becoming a voice for the cure

Fins

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Hi,

 

I have suffered from episodic CF for about 12 years.  Usually I get a cycle that lasts around 1 month a year. I have tried many options to cure it.  

 

     1. Oxygen works well but, as you know, it is difficult to move around.  And it does not abort a cycle, it just makes it less painful and each attack less long.

 

     2. Veropamil worked wonders the first 2 cycles.  It cut the cycle.  But on the third cycle it made the pain less strong and I had less individual attacks, but I still had almost the whole cycle.  I also took this with other anti-inflammatory medication.  So this option makes it more tolerable but it seems to be wearing off and I am not very excited of increasing the dose.

 

     3. LSD has also been an experiment but I am not sure if I am doing it correctly. 

 

-I have been taking LSD for 2 years and perhaps, these 2 years have been the ones where I have had more CH cycles…Not as strong, but more cycles.  I tested the acid with PEN TEST and it seemed to be LSD.

 

                -I have noticed this year (3 times) that when I take LSD (I think around 30-60 micrograms –or sub hallucinogenic levels-)  I get a CH cycle weeks after…

 

                               -perhaps I am taking too little? 

                   -perhaps there is a form a rebound?

 

                Although last year that I took small doses of LSD through the year (10 times) the rebound effect did not happen, but I also met no recognizable improvement in CH.

 

-When I have tried to “bust†(again with around 30-60 micrograms) during the LSD effect I get no pains.  This is also due to the fact that I take the LSD during the day and I get less headaches during the day…Pains gradually start the next day. 

 

     4. Psilocybin has been similar to LSD but gentler.  The effects are less lasting and it is easier to go to sleep.  But I also don’t know if I took the right amount.  This cycle I have taken 2 doses. (Barely felt the effects) About 5 days apart without other medication –except oxygen- and the cycles is not too strong, but it keeps coming like a growing tide…

 

Usually after my trials of “busting†do not work I go back to verapamil. 

 

CONSLUSION

  1. “Busting†does not work for me.
  2. I am not doing it correctly
    1. Frequency of use (It is not too clear for me)
    2. Dosage (I could not find a more specific answer of how much LSD to take…)
  3. LSD and psilocybin may cause a sort of feedback and trigger an episode. 

Thank you

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Sebastianewald

Are making sure that you are off all meds that block the busting? I believe the list on this site is playing well together.

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