shahooty

I'm not sure didgens, I'll try to find out at my next visit. But I have another question for you guys. The drug they tried is one of the anti-CGRP antibody drugs. I either got the placebo, or it's not working for me. I have used nothing but Oxygen to stop my attacks for the three weeks I've been in this trial. Wondering if I can still bust with mushrooms, or if the mushrooms and the anti-CGRP antibodies will conflict with each other. I think I received the Placebo anyway, but in case I got the real stuff, do you think I'm safe to do my normal dose of mushrooms? Thoughts/advice appreciated, Shahooty over and out.

Found out the trial is for an anti-CGRP therapy. New info is that I have to wait for two weeks, writing in a journal before I get the injection. That's two weeks with just oxygen and imitrex injections. No pills. I usually use Frova at night and I am able to sleep through the night. Not sure I can do two weeks just for a fifty fifty shot at something that may or may not work. Blarf. Not sure what to do. Might try. So far this round of clusters hasn't been as bad as I've experienced in the past. I've gotten up to about a 7 and the oxygen has been working really well for me. Aborting the headaches a lot faster than it has in the past. I'm just worried that I'll get too deep into this cycle as it builds steam that if I do decide to use mushrooms in a week it's going to be a lot harder to break out of it. I keep thinking I need to do the trial so that in two years this stuff will be available for everyone. Take one for the team. I'm basically just thinking out loud right now. Beep.

Looking for advice. I have a chance to be in a clinical trial for something that shows promise. But it means I can't bust. No mushrooms. There's a fifty fifty chance I get the drug. Fifty fifty I get placebo. But the upshot looks great if I get the meds. Just worried if I get placebo I'll have to make it through the trial with nothing but oxygen. What to do? Thanks

Yup. Well, that's decided. But interested in hearing your other options.

Wow, so you can actually order the stuff? Has anyone here tried ordering it and taking it? I would be really nervous to try it, but desperation can make you do things.

In my twenty five years of clusters, I've had one that switched sides. I think the pain level was just as high, but I could handle the pain a lot better. The analogy I used with my wife was to imagine I'd been carrying a bucket full of water with my left arm for five hours, that arm is all warn down and achy. Then I get to switch arms for five minutes. It almost feels good to give the left side a break. The switcheroo actually just happened with me. Along with a few other new symptoms that I've never experienced before. A constant pain at the base of my skull. Sore and tense neck and back. And two cycles happening with just a two week remission. Hoping I didn't just make the jump from episodic to chronic.

I couldn't check out that article without registering. But I found it here without registering. This is pretty exciting. I've got about a week left of these headaches and then I'm going to start hunting down a surgeon that can get this done. http://www.futuremedicine.com/doi/full/10.2217/14750708.4.4.451

I think you can probably get testosterone treatment wherever you are. I've done some searching and there's a testosterone treatment place close to my house in Los Angeles, it seems like it's for aging men with lower levels, but I'm going to call and see what's up. Also, I wonder if using something like androgel might have the same effect.

Just wondering if any of you episodic sufferers, like myself, have noticed any patterns when your cluster series comes to an end? In the past they've always sort of petered out for me. But during my last cycle, they built to a crescendo and then I had a really bad one, that seemed to last all day. Then as the headache finally left I felt drained and had a good nights sleep and they were gone. But this was the exception for me not the rule. Shahooty

Beaming happy vibes your way Ajax. Hope it works. Let us know if it does.

Have any of you tried Botox for episodic clusters? I'm having a bitch of a time getting through my most recent bout and was thinking of trying it. Would love to hear any stories you may have.

Yes. Definitely weather/seasonally influenced. And when I'm in a cycle I get my very worst attacks, my 10's, on nights or days when it rains. Wonder if the change in barometric pressure has something to do with it. Good luck getting through it.

Bejeeber, that's where I think I am right now. This has been a pretty shitty series for me. I'm just hoping the verapamil will work enough to get me through the day and that the oxygen can get me through the night time attacks. I think I'm going to stay off the Frova. Seems like taking that every night will be habit forming. I don't want to just prolong things and face them later which it seems like the Frova will. Although, I had a good night sleep last night after taking the Frova and just woke up with a five that made it to a seven before the oxygen chilled it out, and have a feeling I'm going to get a couple more tonight. Just gotta be strong. Get through the next few weeks. Then I can start a true busting strategy.

Thanks Psiloscribe. I'm definitely not taking the shrooms right now. I'm going to really try Dr. Kudrow's plan and see where it takes me. I'm almost off the prednisone, and the verapamil seems to be having some effect in blocking. I had to increase dosage to five 80mg pills a day instead of four, and I feel pretty yucky, but it seems to be keeping the worst at bay. The one thing that has me concerned is the nightly Frova. It seems like if I'm taking this every night I'm going to become dependent on it. And it'll lead to more rebounds. Does anyone have any experience with this? I asked him specifically twice if it was a good idea to be taking a Frova every single night and he was pretty adamant that it would not lead to rebounds, which contradicts a lot of personal stories I've been reading online. What do you guys think?

Yeah, Depakote was bunk prescribed by a jackass, TakinitEZ So, I made it through last night without an attack until five AM, usually get three a night. Got up to about a six but oxygen brought it under control. I forgot to post above that Dr. Kudrow also put me on Frova at night. One pill that apparently works the same way as Imitrex but has a 12 hour half life instead of a three hour half life. I believe it kept me pain free for about eight hours. I was so skeptical about the verapamil as well. But Kudrow was emphatic that it's very often prescribed wrong. Taken as immediate release pills four or five times a day instead of as extended release tabs is the way to do it. I aborted this morning with Oxygen and have taken two verapamils so far and have been attack free! Seems to be working. I'm a little scared of taking the frova at night as anything Imitrex related seems to have given me rebound headaches in the past. But he was pretty emphatic about it not working in the same way, so I'll give it a try. Just having the oxygen there is pretty reassuring that if rebounds do happen, I can use it to abort for a few days and get off the Frova, even if it means missing work for a while longer. My company has been very understanding. I'll keep you all posted. But this new verapamil dosage seems to be doing the trick. (Knock on wood). It was news to me. So if any of you have tried it in the past and it didn't work. Might be worth requesting this dosing method. Although maybe this is old news and you've all tried it. And once again, thank you all for your words of support, your advice and encouragement. You are all very special people to reach out to help others in this way. I read some of these posts and they bring tears to my eyes, and not horrible cluster tears, the good kind. Shahooty

And just ordered the optimask. Thanks for that advice guys. I believe the one they're bringing tomorrow is just a standard mask. Hopefully it'll work well enough until the optimask arrives.

Thank you all so much. The concern and brotherhood on this site is pretty amazing. Just knowing there are other people that really "get" what I'm going through is a source of strength. Since posting today I managed to get an appointment with a real cluster specialist last minute. Dr. Kudrow in Los Angeles. He prescribed oxygen for me (with a 15 lpm regulator), and they're delivering a large tank tomorrow. He said the neurologist I saw was full of BS (thanks CHFather for the anger at him on my behalf!) and that Depakote almost never works on cluster sufferers. He also told me to try the verapamil one more time before trying mushrooms. He said that most doctors don't dose it correctly, giving out time release capsules that don't work. Instead he prescribed immediate release 80mg pills to take once ever four hours. That verapamil works best when you get spikes of it in your blood throughout the day. He said that he really feels like I should give this one last try before going for the mushrooms. I feel like giving him the benefit of the doubt because he really was so knowledgeable about clusters, the first doctor to really give me a sense of hope in a long time. He was definitely aware of "busting" and was open minded about it. But seemed to really believe that the verapamil dosed correctly would work. So, I'm looking at one more (possibly) rotten night before the oxygen gets here. Good news is, I already have a supply of mushrooms to use periodically as maintenance from here on out, once I get through this cycle. Or in case the verapamil doesn't work. And I just know I'll be able to detox from everything once I get the O2 tank set up. Thank you all again. The love and empathy I see on these boards is truly a beautiful thing.

I'm a newbie to the board, so sorry if this is covered somewhere else. Just started one of my worst cycles ever. Prednisone taper tamed the cycle for a week while I started verapamil, but as I started coming off the taper they came back worse than ever. Verapamil which worked in the past is making them worse now. Ended in a saturday night with four Imitrex needle sticks. Went to emergency room on Sunday, oxygen got me through one attack and the doctor gave me more prednisone to keep the attacks at bay until I could see a specialist. Saw a neurologist Monday. Prescribed Depakote. I haven't been able to find many success stories from the Depakote online. Am I wasting my time? At the same time I managed to track down some mushrooms. Took them once, and it seemed to abort an attack and keep me pain free for about four hours. until they came back even worse. I'm currently Imitrex free for 48 hours and mushroom free for 72 hours. Although I am on 80Mg of prednisone a day. And I took my first dose of depakote last night. 1000 mg. Should I stop the depakote and try the mushrooms again? Having trouble getting a dr. to prescribe oxygen. Contacted a welder supply place today and am pretty sure I can get a tank in a manner of hours. I can't think right now. Someone please tell me what to do. Getting desperate.