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        Cluster Headache Help and Support >> Cluster Headache Specific >> Clusterf*cked in Wisconsin
        
(Message started by: slhaas on Dec 3^rd, 2006, 3:55pm)

Title: Clusterf*cked in Wisconsin
Post by slhaas on Dec 3^rd, 2006, 3:55pm

I write this post a defeated man. I finally must submit to the beast and admit I am powerless against it. There is just no more I can do. For years I suffered from CHs, but did not know what they were, yet somehow I made it through them. Last year they really started to get more severe and consistent, and I admitted I needed a diagnosis and help, but I still battled on. I fear I am becoming chronic, and after my latest bout I admit defeat.

I wrote on this forum at the mid-point of my last cycle, and I was in pretty bad shape. I received a lot of support from all of you, and for that matter a lot of different kinds of support. It really helped me through it all, and made me feel that I could conquer this beast, and learn to cope. I thought that was my worst cycle, but I was wrong. After my shortest remission the demon is back, and filled with more hate than ever, and to make matters worse, my situation is more dire than before.

Last time I was starting a new job and waiting for my new health insurance to kick in. It sucked, but there was a defined time to wait, and I could see the light at the end of the tunnel. My doctor worked out a working combination of imitrex, prednisone and verapamil, and if I could just make it the 90 days, I'd be fine. Well, since then I was unfairly terminated from a job, and partly because of these headaches, unable to find decent work since. I am on unemployment for now, which isn't much, but it pays the bills. The problem is that unemployment can't pay cobra and doesn't come with insurance. I just hoped I wouldn't get hit with another cycle, and then I did.

I've been getting by with the help of my brother's girlfriend. She gets free imitrex pills for her migraines, but hasn't had a migraine in months. She gave me 18 100mg tabs of imitrex, but probably can't get more for a while. I figured I'd suffer through a week or two of some bad hits, and then have enough imitrex to make it through the holidays, and at least then I could enjoy that time. Usually if I take one pill before bed I wont get hit at night and can pretty much abort the hit altogether for 24 hours. Well, this cycle has been giving me 2 and 3 hits per day, and the good ones have been a kip 8. They've also increased from an average of 45-60 min of severe pain to 90-120 min. of severe pain. I've actually been crying, vomiting and begging god for mercy during these hits, all for the first time. In an effort to make the trex last I've been trying every other possible solution at my disposal. Water didn't work, massive amounts of Kudzu didn't help, melatonin not only didn't help but now no longer makes me tired, oxygen makes the pain go away but as soon as I stop the flow the pain comes back worse than it was before the oxygen, I had a few RC seeds but not enough and they didn't work, motion tabs did nothing, benadryl did nothing, ice did nothing, sleep interruption did nothing, sleep deprivation did nothing, and that's about it. Part of my attempt at a solution this time has also been to take a ton of pain meds. I know they aren't supposed to work, and don't work, but I've been trying anyway just in hopes of a miracle. I've been popping aleeve and excederin migraine pills like candy (acetaminophen, aspirin, caffeine) and especially before sleep. I fear that all they've done is ruin my liver, and I know for a fact that my stomach is in bad shape right now from it.

I would absolutely love to try busting the cycle with mushrooms, but all the begging, pleading and bribing of every friend and friend of a friend that can get mushrooms has turned up nothing. When I don't need them (not in a cycle) these people have them all the time, but whenever I am in need they can't find a spore to save my life. Short of driving into the ghetto and asking thugs for mushrooms, I have no more options in that regard, which is a shame.

This morning I decided that I will take my 1 or 2 imitrex tabs per day starting today, even if it means they wont last through or even to the holidays. I simply can not go through another instance of what I experienced this morning. I don't know what I'm going to do when I run out, but I'm hoping I will have found something by then. I'm working with my doctor as much as she will for free via the phone, and there is a chance that I can get in on some manufacturer programs for verapamil and imitrex, but they're a long shot, and the process is very slow. If it gets bad I can try the E.R. for a few days, but that will screw me financially.... but we'll see.

I'm sorry to burden you all with my very long ranting sob story, but I really needed to vent, and you have all been such a moral boost for me in the past, so I figured it couldn't hurt. I ask that if any of you can offer any suggestions for remedies I didn't try, drug programs or solutions I haven't thought of or tried, or even some nudges in the right direction for some of the gray area "busting" solutions, that you PLEASE, PLEASE share them with me. I really am at my wit's end, and I truly do understand now why these are called "suicide headaches".

My girlfriend fears for me with every attack, and I can't stand to allow her to witness them anymore, so you are really my last place to vent, so I really do appreciate the kind words, thoughts, prayers and suggestions.... and thanks for taking the time to read all of this.

Title: Re: Clusterf*cked in Wisconsin
Post by pattik on Dec 3^rd, 2006, 4:32pm

SL, I'm sorry to hear that you're having such a rough time of it. There is another alternative to shrooms which could help you until you are able to grow or procure your own. LSA from
RC seeds or Hawaiin Baby Woodrose seeds (HWBR) has helped many people at least reduce the intensity of their cycles. You can get the seeds fairly quickly and inexpensively, and most or all of the info you will need to try this is at:
http://www.clusterbusters.com/faqlsa.htm

Good luck if you should decide to try this alternative.

patk

Title: Re: Clusterf*cked in Wisconsin
Post by slhaas on Dec 3^rd, 2006, 4:36pm

Does the baby woodrose work better than RC seeds? I've taken RC seeds in the past, and they seemed to help lessen the severity, but they didn't kill the cycle. Although, I took them at the end of my cycle, and the cycle ended a week or so after trying the RC seeds, so maybe they helped bust it a little... it's really hard to tell. I spent the last of my expendable income at the moment on Kudzu in hopes of it helping. I have another shipment on the way that vitacost.com wont cancel, but I'm hoping to get my money back on that with a return and use that for RC seeds... or baby woodrose. Which do you think is better?

Title: Re: Clusterf*cked in Wisconsin
Post by pattik on Dec 3^rd, 2006, 5:00pm

I haven't tried the HBWR yet--just the RC. Maybe someone will step in and give an opinion about it.

Title: Re: Clusterf*cked in Wisconsin
Post by chewy on Dec 3^rd, 2006, 5:23pm

Why not welders or medical oxygen?

Its cheap and effective for most.

Title: Re: Clusterf*cked in Wisconsin
Post by slhaas on Dec 3^rd, 2006, 5:36pm

Here is my experience with oxygen. It isn't cheap without insurance, and my old insurance didn't want to give it to me. With that said, I do have an ample supply of oxygen from a while back, and even a clustermasx (sp?) from here. Several times the oxygen did nothing at all, but it may have been too far into the attack to help. Other times, I've gotten to the oxygen early in the attack, and yes, it seemed to stop the progression and even tone back the pain a great deal. I would then stay on the oxygen for varying periods of time after the pain plateaued or regressed completely (from a minute to a half hour), and I had the same result each and every time. I took off the mask and felt good... then within a few moments I started to feel a shadow. Within minutes I was back to near the level of pain I was in just prior to initiating oxygen. A few minutes later I was in the throes of a kip 8-10. I think I am a rare exception to the oxygen therapy. I am also a rarity in that imitrex works as a preventative for me, albeit a somewhat risky one.

Title: Re: Clusterf*cked in Wisconsin
Post by Kevin_M on Dec 3^rd, 2006, 5:37pm

I guess in one variation of HBWR use, I got consistent 6 hour pf time with each three* seed soak for a month but discontinued that regimen. Be careful with any initial doses going a few than more for longer pf time, I found it very ill-suiting and wouldn't recommend it personally but did get several days pf.

Others will have perhaps better methods with HBWR seeds, that was just the way it seemed to work for me. By all means, reference the link/site Patti posted if you should lean that way.

And there can be different variation in potency/quality with different orders of them.

* the number of seeds below threshold of feeling any effects dosing a few times daily but got some results from, four was a might edgy and began digestive differences.

Title: Re: Clusterf*cked in Wisconsin
Post by kcopelin on Dec 3^rd, 2006, 8:15pm

Check your PMs.
kathy

Title: Re: Clusterf*cked in Wisconsin
Post by slhaas on Dec 3^rd, 2006, 11:17pm

Thanks for the [smiley=heart.gif] guys!

Title: Re: Clusterf*cked in Wisconsin
Post by Guiseppi on Dec 3^rd, 2006, 11:24pm

I had the same problem with oxygen, 10 minutes after I shut it off they were back. I've had awesome success taking 2 cafergot when I start the oxygen. It stops the head ache from coming back when I stop the 02. Cafergot is cheap, please don't give up on the 02, with welders oxygen and the cafergot you might have the same success i have, keeping you in my families prayers.

Guiseppi

Title: Re: Clusterf*cked in Wisconsin
Post by Pinkfloyd on Dec 4^th, 2006, 12:40am

If you go with seeds, I would suggest the HBWR.

If you go the psychedelic route, you will need to do the detox period, as I'm sure you know. In any case, please do try to 02 again as it may help.

I understand your problem with it.

I would suggest trying;
Once the cluster has subsided, keep the 02 flowing at the high flow rate and then, after about 5-10 minutes, slowly begin to crank down the flow rate a couple lpms at a time, stopping at each level for a minute or so. This will slowly bring you back toward "normal air mix" instead of going so quickly from 15lpm pure 02, to room air. This might stop the rebound effect you're experiencing.
I'm not sure how this would work with a clustermasx...it may continue to give you a full breath of pure 02 all the way down. Are there side ports that can be opened?
Somehow, try to slowly go from pure 02 to room air. Maybe your GF can give you CPR every 4th, 3rd, 2nd, breath ;-)

Bobw

Title: Re: Clusterf*cked in Wisconsin
Post by slhaas on Dec 4^th, 2006, 12:43am

I'll definitely look into Cafergot. The oxygen seems to be an effective and relaxing abortive, if only it held. I'm glad I'm not the only one with this oxygen problem though. The cafergot doesn't seem too bad, but to be honest, it's still out of my league price-wise for the time being anyway. I'll keep it in mind for the future though.

Title: Re: Clusterf*cked in Wisconsin
Post by BB on Dec 4^th, 2006, 1:18am

This is what I have learnt with the oxygen. Start it early so that it has a chance to work properly. Once the headache is gone, the drilling etc has stopped, continue on oxygen for another 10 mins, slowly turning the flow down from 15L/min to 13, 10 , 8, 6, 3 every 2,3 mins then stop. Once you get to 6L/min, lift the mask off your face a little to allow some room air to come in with each breath. This way it will allow your body time to adjust back to normal room air from the high flow of pure oxygen. This should help stop the rebound.

Ice applied on neck, temple and eye also helps with the pain, Again here the ice should be removed slowly to allow steady nornalisation of temperature.

Good luck and painfree wishes.

Annette