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Advice needed. Getting desperate


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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.

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The Imitrex and the Prednisone can block the psilo.

Not sure about the depakote, maybe someone else has experience with it.

IMO, ultimately detoxing off all rx meds. is a big plus.  You can still dose, but may have limited results until your system is clean.  Try to wait 5 days before trying the psilo again, as your receptors are likely closed until then, and it can't get in anyway.

Hang in there, right now this is really hard, but it will get better. 

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Hi shahooty and welcome to the board. You're wise to get a proper oxygen setup and learn how to use it correctly. That's a good start. You'll learn many things here that you'll find helpful in dealing with - and hopefully getting an upper hand on - your CH. I wish I could tell you to take this followed by that and then do this and your CH problems are over - but I can't. There's a lot you'll need to learn 1st. All the info's here for you and you'll be glad you learned it but you gotta learn it 1st.

To get you started, this video (

) of a talk given by our founder, Bob Wold, will give you a broad overview of what we're doing here and how Psychedelics have been found to abort and often provide longtime relief of CH. The Menu to your left provides a link to the CH.com Oxygen Page that will show you how to get a proper oxygen setup. In the Forum Jump at the bottom of this page is a link to the ClusterBuster Files. There you'll find what is probably the most complete collection of articles regarding CH and Psychedelics on the internet and possibly in the country. They're in no particular order, but may I suggest you first read "disclaimers and warnings." Then, follow your interests, but be sure to include "*BUSTING INSTRUCTIONS* and info for Newcomers" along with "Quick Rundown."

The folks here are anxious to help you. Please ask questions about anything you're unsure of. Join in the conversations and help us to help other sufferers. You are needed, appreciated and we're glad you're here.

Ron

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shahooty, oxygen is probably your most urgent requirement right now.  I know exactly what you mean about having a heard time thinking -- that beset my daughter, too, and she's a darn smart gal.

With many curses hurled toward your idiot doctor who won't bother learning about oxygen, I'm going to assume that you'll get a welding tank.  You need a large one, or two, and you might want a smaller one for portability.

Then you'll need a regulator that allows a flow rate of at least a maximum of 15 lpm (liters per minute).  Many people are now using 25 lpm and higher.  And you'll need a non-rebreather mask.  Because there are two different kinds of regulators, you'll need to know what kind your tank requires before ordering it.  You can generally find regulators at eBay.  We got ours here: http://www.tinashomecare.com/oxygen_therapy_oxygen_regulators.htm?gclid=CMP24tObqacCFRVx5Qod_wypDw.  In my experience, the eBay shipping took about 5 days, which is a long time to wait.  If you're anxious and willing/able to pay more, the folks at that link I gave you will overnight it.

The Optimask is the preferred mask.  You can order it at http://www.clusterheadaches.com/khxc/index.php?app=ccp0&ns=catshow&ref=LifeGas.  I don't know how fast they'll ship.

While you're waiting for all that, a few suggestions (which I should say I've only read about): Have you tried chugging RedBull to abort?  Here's a testimonial about red pepper: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1297394064/0#0 .  Some people suggest going to a fire station and asking for oxygen treatment, since EMTs there can administer it.  Some suggest inhaling very cold air forcefully through your nose (I've read about some who do that through their car's air conditioning vents if they don't live in cold climates).  Intense physical exercise helps some people abort or reduce the severity of an attack. 

I think many people would advise that you might want to continue any meds that work for you if your attacks are severe, nothing else helps, and you don't yet have your oxygen set up, and then you can detox once you have the oxygen.  But that's a judgment call for you.

You might look at licorice root as a "busting" option, but again that's your call, eventually:  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068

I'd like to return to the subject of your heartless idiot doctor with some suggestions, but that also seems like a subject for another time.

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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.

That is unfortunately a very common prednisone story right there.

And what the above responders said about O2! Especially since once you get it reliably aborting attacks it can provide good cover for detoxing from the meds as you prepare to really effectively bust.

So if I were you I would follow up immediately with getting the welding O2, and get right on ordering a good regulator and mask (if there are none available in your area). I remember Ron mentioning that "Harbor Freight" stores (I think it was) carry them, but I don't actually know what those stores are  :P

As far as any imitrex injections you use in the meantime, hopefully you are (or will be) deploying the very effective partial dose method, which really enables you to stretch those doses. Here's the link if you haven't seen it:

http://www.clusterheadaches.com/imitrex.html

We know your desperation all too well shahooty, but hang in there - it looks like things could get significantly better for you pretty soon.

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Harbor Freight: http://www.harborfreight.com/catalogsearch/result?category=&q=regulator

They have regulators, but I don't think they have masks.  As I recall, Keith got his regulator at a Harbor Freight, and it didn't have any lpm settings, but he (and I think Ron, too) was able to adjust it to an appropriate flow just by "feel" of what kept the bag full.

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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.

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Thanks so much for letting us know what's going on!  Good luck with the verap (I'm not saying that sarcastically -- I really hope it works out for you.)

One last trivial piece of advice: Be sure that the folks who deliver your oxygen set it up for you and show you how to use it.  Yes, it's pretty simple, but you want to know it's set up right when you need it.  Stuff happens, and this is definitely a time when you don't want it to.

There's more useful advice at http://www.clusterheadaches.com/O2/index.html

Best wishes!

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GOOD WORK Shahooty! O2, an optimask, and an appointment with Kudrow - excellent!!!

Some folks who have to make do with a rebreather mask for a night will tape over the holes and just alternate it on for inhale, off for exhale.

I wouldn't be surprised if Kudrow isn't one of the very best CH docs out there. The way I understand it he's a CH sufferer himself (!)

Trivia tidbit: he also happens to be Lisa Kudrow's dad.  :)

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Shahooty,

Glad to hear there's A doctor out there somewhere that gets it...

When I was first properly diagnosed years ago I was perscribed Verapamil and it worked beautifully.  I thought I had found the miracle drug for my clusters.  I came off of it a few weeks after I was sure my cycle had ended.  When my next cycle started I again got another perscription for Veramamil, but this time wasn't so good.  Firstly it didn't work and the attacks seemed to actually be worse it also caused heart palipitations called PVC's Premature Ventricle Contractions.  I had to stop the Verapamil and again start searching for something else. 

I hope it works for you, and you can get some relief.

Pain Free Wishes!

Jeff

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Shahooty, I was on Depakote for a short time. It didn't work and once I got up to therapeutic level in my blood stream, some sort of switch went on that made me voraciously hungry, constantly. Not good.

Sounds like you're on a great path now.-T

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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

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For the record, Dr. David Kudrow is well aware of Busting.   I've not met him but I understand he is a very good Neurologist.

So if you do later decide to use the 'shrroms Shahooty I think you'll find him understanding.  Likely some professional responsibility issues will have him recommending standard medical treatment first, this is often the case. 

It was his father, Dr. Lee Kudrow that first "discovered" and discussed oxygen therapy for CH.  Dr. Lee was also a clusterhead, as far as I know no one else in the family has CH.

FG

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CHfather,

WOW! I just now read your post. Lisa Kudrow as our spokesperson - what a great idea! Even if she isn't herself a CHer, there's apparently some family incidence of CH. She KNOWS what it is. Either her father or grandfather or both are sufferers. Also, they're both apparently professional HA specialists. Damn! There just has to be somebody who knows her or some avenue of contacting her. I'm really excited. I gotta go have a cigarette. Damn!

Ron

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My problem always is . . . now what???  I'd be willing to try to participate in finding her, or imploring her . . . but what would be asked of her?  (Pretty sure she wouldn't endorse busting, of course (though I guess you never know), but as spokesperson for some campaign for research or awareness or whatever . . . it does seem like an absolute natural.

Also seems like maybe NatGEo could use her as some kind of spokesperson/narrator and get more attention . . . but then again, there's the "illicit" connection.

I don't know anything about the rest of the CH world; for example, I've only been to ch.com once or twice.  Is there some organization that has any kind of act together in terms of research and advocacy??????

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As FunGuy stated, David is Lee's son. Lee Kudrow did more early cluster research than just about anyone, including the discovery of 02 as a treatment. That was almost as long ago as LSD being outlawed so you can see how long it takes to get cluster treatments recognized.

David is one of the best and most experienced cluster docs in the US.

Shabooty, I know you're desperate and hurried but its best to take your time to get it right. I know the desperation this pain can bring about but.....

You found a great doc so I would try to stay connected and work with him. Even if his med regimen doesn't work in the end, you'll need to properly and safely make the transitions.

Not that you said you would but,,,,Don't be dosing with mushrooms along with the Frova. Not only will they not work but you don't want o be building up too much serotonin in your system

Prednisone is the biggest blocking agent out there for the CB treatments. Not only do you need at least a 5 day break but the longer you are on it and the bigger the doses, the longer you'll need to detox from it.

All that said, I think the most important thing is exactly what people have been saying (and you understand) and that is....get the right 02 setup going....and continue reading.

best of luck,

Bob

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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?

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Welcome to the group Shahooty.

I am impressed with your Doctor but...

Verapimil nearly killed me after being on it for two years. My pulse was down to 48bpm. I couldn't Sh*t, I could barely get out of bed and the attacks finally busted through all the medication. I have tried it all with the exception of deep brain stimulation. I took Prednisone and have had a total hip relpacement due to the side effects. Bad Stuff! >:(

Mushrooms have literally saved my life. I would advise you to save yourself a lot of time, energy, pain and money. Get detoxed and bust the beast with 1.5g of dried mushrooms. The mushrooms together with oxygen are the only reason I am alive. No exaggeration.

I am sorry you had the need to find us but you found the right place.The people on this board are my best friends. They have saved my life as well as countless others.

Hang tough

Dan

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