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I cn't break this cycle

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I've been in the most severe chronic cycle now for at least a month. Have tried all previous busting methods but nothing works now. Has anyone ever heard of someone unable to get any relief for the rest of their lives? I am scared to death. 3+ CH or more everyday. I have tried all remedies which I won't bore you with. Answers?

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Since you say "I have tried all remedies," I'm only going to ask whether that includes the D3 regimen, following the whole regimen carefully (including adding Benadryl)?   https://clusterbusters.org/forums/topic/1308-d3-regimen/

 

Wish I could say that there's something that eventually helps everyone -- and it seems to me there almost always is -- but of course you read about "intractable" cases for which some kinds of surgery are the next step.

 

Regarding busting, I would say that many people find that they have to switch substances at some point, for example going to seeds if they have typically used shrooms, or vice versa.  This often helps.  Some, maybe even many, busters (including chronics) have found that the synthetic tryptamine 5-MeO-DALT helps them. Sometimes the results are pretty miraculous and sometimes they're disappointing.  We have not really talked about DALT at this forum for quite a while, but if you are interested in that, I can get you some contacts.  As I understand it, DALT is not explicitly illegal in most US states, so it can be purchased online (from foreign vendors), but you have to know who to go to.  DALT is (or at least once was) discussed extensively at the Facebook group, "Cluster headaches."  You have to request to become a member there.  This link might take you there -- I'm not sure whether it will work: https://www.facebook.com/groups/17789934480/

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Okay please tell me more about DALT......I can't take this cycle anymore either.  Back story...I have had clusters for 20 years or so but I have been lucky the cycle lasts about 3 months and then nothing for about 2 years.  The past couple times I have tried Botox....which worked but they don't tell you a side effect is hair loss and when the botox wares off the headaches come back and you start the cycle all over.  Next I tried the nerve blocker which worked but again the cycle came back and the blocker did not work, now I am 4 months and no sign of going away.....I read the blocker can cause cycles to last longer so now I am feeling it will never stop.  They wont give me predosine anymore and that is the only thing that holds the headaches off.  Being a single mom with in a new town and no support, I am scared I can't keep this up any longer.  (Sorry it is late and I am venting, scared to go to sleep.  So if DALT works I am soooooo ready.  

 

Thanks 

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Treelove2,

 

Have you read over the primary methods discussed on this site?  Magic mushies, LSD, LSA (legal seeds), etc?  

 

Also,

Have you tried energy drinks (they really help reduce the pain level of individual attacks)?  Do you have 100% high flow O2 (Oxygen)?  Do you primarily get the night attacks / day attacks, or mixed?

 

 

Sorry for the 30 questions, just trying to get an idea where you are in regards to common cycle and attack treatments.

 

J

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Treelove, J's questions are worth answering. It would probably be good to tell us what else you have tried. Verapamil?  Triptans?  Those are the two most common prescriptions (oxygen should be the most common, but it often isn't), but even if you had them, if you were given too little verapamil or an ineffective kind of triptan (pills instead of injections), you haven't really "tried" them properly.  Doctors screw up all the time in treating CH. 

 

In my post above yours, I give all the information I have about really learning more about DALT, which is to go to the Facebook group called "Cluster headaches" and become a member.  There you will find lots and lots of informed discussion about DALT.  I provided this link in that post, though I can't say for sure that it will work for you: https://www.facebook.com/groups/17789934480/  If you go there and request membership but have any problems getting accepted (which shouldn't happen), let us know. 

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Wow I did not really expect anyone to take the time to read my rant.  Thanks!  I will be happy to answer 20 or 100 questions if it helps.  I have tried just about everything.  Once had a cocktail of Verpamil, Caphrogot (Which I am sure I spelled wrong), Topomax (Which is terrible), Botox...which worked but only for 3 months then I started the cycle all over again.  Tried the SPG Blocker which worked the first time like a charm....downside the cycle came back sooner and now seems to last what seems like forever.  I use Imitrex to get rid of the headache, which works like a charm but I am sure it causes rebound headaches but carrying oxygen around to my daughters theater, school, etc is something I try to avoid and the oxygen takes much longer than imitrex.  So now I am feeling maybe the blocker did something and this will never go away. I have to say I have a fantastic doctor who says I know more about this then him so he will let me try just about anything.  

 

So what works is Predonise.  Yes I know .....the side effects.....are killing me.  I have gained 20 lbs, my feet are swollen and I am moody and scared to death that I am just killing myself (I read about the damage I could be doing to my body being on it).  I am taking 50 mgs a day and have for about 3 months but it is the only way I can get away with only having 2 or 3 headaches a week which in itself is a miracle but I have to say I feel like a drug addict, between what insurance will allow me to have and when my prescription runs low, I run around begging for more steriods and hate myself for taking them.  I know I should be happy and grateful that I am getting more relief than many I read about  but I can't keep doing this forever.  The doctor is going to make me stop at some point or I will not be able to walk because I have gained so much weight and falling asleep on my fat feet.

 

 I just read about the D3 Regime and went out last night and bought everything and started it today but I did not see anything about if the steriods will effect taking the vitamins and I am scared to stop them.  

 

I even ordered some seeds to try.....never thought I would go that far but I have to be honest I feel like I am losing this battle along with my mind, spirit, and fight.  I know we all feel alone with this but during the day I am a business owner and have to act like everything is okay and at night I am a single mom so I have to act like I am in control but deep down I am scared this is my new life since the cycle should be over by now. 

 

I joined the facebook but am awaiting approval.  In the meantime, does anyone know if I do try the seeds do I need to stop the steriods and the D3?  I think I read if I try seeds then no imitrex (which terrifies me, I try not to have a headache in front of my daughter as I know it will scare her so letting go of the imitrex is very scary.)  Wow I sound like such a wimp.  

 

Anyway, thanks for reading my rant again.  Hope I answered the 20 questions and look forward to reading your thoughts

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G'mornin Treelove

Wow! Ok young lady, the first thing we need to figure out is WHY the oxygen is not working better.....what flow rate?....are you using a non rebreather mask? It's imperative that you get O2 working so you can get off the steroids before they cause irreversible damage...weight gain is the least of your worries with long term use of that stuff!! And, you need to detox a minimum of 5 days prior to busting so it's important that the O2 is aborting rapidly...I routinely abort in 5 to 8 minutes...just about a quick as a jab of trex!!

DD

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What Denny said.  What flow rate is the regulator are you using, and what mask do you have?  Have you tried an energy shot or energy drink right as you're starting the O2?  Are you getting good deep breaths of O2, and holding it in your lungs for a moment before you exhale?

 

If you're using trex, you should at least be splitting your injections: https://clusterbusters.org/forums/topic/2446-extending-imitrex/

 

Have you read the document and the follow-up posts about triggers?  https://clusterbusters.org/forums/topic/4568-triggers/

 

You can't take the seeds yet because of all the blockers, but you don't have to worry.  With 90-plus percent of people, there are zero psychedelic effects.  If you get things more under control with O2, D3, energy drinks, you can also start with low doses of seeds to be close to 100% positive that you won't get any effects.

 

You don't sound like a wimp.  CH is miserable, scary, and incredibly hard, particularly on someone in your situation with kids and a job.  You're doing what you can, what you feel you have to do.  It's a war, and you're doing what you can.  We're just hoping, and believing, that maybe we can help you find better ways.

 

I've also PMed you regarding the D3 regimen.

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I am sorry I fell off the face of the earth.  I have had a brief but beautiful break for about 2 weeks and it was much needed.  Thanks for all the encouragement and assistance.  I did try the D3 and I think it worked for a little while.  I came off the steriods but could not stop cold turkey so had to go done until off.  I have been off for 5 days tomorrow and up until 2 days ago was headache free but they came back....UGH!!!!  I really don't get it, my normal cycle is 3 months and if I can go a week without a headache they are gone but not this time...which is the scary part to me.  I am on month 4 and can't predict them at all this time.  But I will say even though they are back the D3 seems to still be helping, I would say the pain is only a 7 instead of a 10 so that is something.  I am scared I restarted my cycle though because I was up to 3 headaches a day (which use to be how I could tell they we going to go away) now I am at 1 a day.......dear god don't let this mean a new cycle.  Anyway, I ordered some seeds and am going to try that.  I have only done oxygen the last 2 days so I should have a clean system to try it.  I can't think you enough for talking to me, it really does make a huge difference to know I am not crazy and not the only one.  Fingers crossed this works.

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Checking back........I have gotten the seeds and tried them not sure if it is the d3 or the seeds that is helping.  The first night I took 30 seeds, I got a headache at about 2am but I have to say it was probably only a 4 on the pain meter.  I still feel a ton of shadows during the day and one headache at night but it has not gotten more than a 5 so something is helping.  I waited 5 days and tried the seeds again, this time bumping up to 45 seeds. (Last night) and Wholly cow no headache last night.  I woke up on cloud nine but by around 11am today I got shadows UGH!!!  I was going to try one more time in 5 days but go up to maybe 50 or 60 and see if that will do the trick. I usually take them right before bed so happy to say no side effects for me.  At least it is giving me hope that something is helping me fight back.  Also stated research the dalt but thought I would continue on the seeds while reading more about dalt.  Hope my next message is they are gone.  

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Treelove, I too just tried the seeds 6 days ago and it has definitely changed things for me.  No major hits since.  Something you might want to try for the shadows is Claritin-D 24 hour.  Go to any pharmacy.  Ask for the generic 24 hour version of it.  It is has to be the -D kind.  I am taking one every evening and sometimes half of one during the middle of the day.  Doesn't make you sleepy.  For me, this and the seeds seem to make life almost normal again.

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Thanks for the Claritin advice. I was wondering about that. I have been using tyneol sinus because the weather here in Dallas has been overcast and that usually triggers headaches for me but it does make me sleepy so I will try the Claritin. By the way....second night with no headaches....still shadows a little but wholly cow I am doing the happy dance!!

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Sorry to hear they came back after going off prednisone, but it was probably good you went off of it. I just wanted to offer some encouragement: My last cluster was also way longer than usual, and I was getting really worried I was turning from episodic to chronic. However, it did end, although the remission time was shorter than usual. That said, I've had better luck this cycle--so many mitigating factors. I hope this longer-than-usual cluster comes to an end soon for you.

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