Author |
Topic: back again after three years rid of the demon (Read 354 times) |
|
evilbob2k1
Guest
|
 |
back again after three years rid of the demon
« on: Aug 14th, 2002, 7:58pm » |
 Quote  Modify
 Remove
|
Hi Fellow Clusterheads-
No offense but I didn't ever want to have to come back to this site. I have been cluster-free for going on three years now, and hoped beyond hope that I would never have another one. But, last week, they started again. They used to only attack the right side of my head and my right eye, but now I get them on both sides. I don't know how I can live with this again. I have no insurance this time around, so I have been suffering through them. I used to get maybe three to four attacks a day, now it's jumped to 7 or 8 a day. None of my remedies work anymore. I tried laying in a steaming hot bathtub with my head submerged in the hot water, then lay still steaming from the tub in front of a fan on high. I have been through three jars of Vicks Vaporub, but the upside is I have lost about 15 pounds because I can't even eat without getting nauseous.
The last cycle I can remember lasted six months, and I pray to God that this one doesn last nearly that long. I must close for now because I feel another one coming on and don't want to egg it on by staring at a monitor.
Take care, my fellow cluster survivors. I'll check in soon.
Bob
|
|
 IP Logged |
|
|
|
maria
Guest
|
|
Re: back again after three years rid of the demon
« Reply #1 on: Aug 14th, 2002, 8:52pm » |
Quote Modify
Remove
|
Hey Bob, if you don't have insurance, just settle for the oxygen. One tablet of cafergot before bedtime, might help. Don't let the beast win. Maria
|
|
IP Logged |
|
|
|
Opus
New Board Hall of Famer
(Insert witty comment here)
  
Gender: 
Posts: 2509
|
|
Re: back again after three years rid of the demon
« Reply #2 on: Aug 14th, 2002, 9:34pm » |
Quote Modify
|
Sorry to have you back Bob, Try some ice on your head, going to a cold place (in front of an AC) , Hot sauce under the tongue for five min. or just eat some. Try to get welders o2, many have said they use the same tanks for medical and welding. I'll pray you have a very short cycle. Many PFDAN to you, I just had my first day without even shadows so it is possible. Paul B.
|
|
IP Logged |
Zed-Zed-nine plural-Zed alpha,
There is no place like home.
|
|
|
evilbob2k1
Guest
|
|
Re: back again after three years rid of the demon
« Reply #3 on: Aug 14th, 2002, 10:09pm » |
Quote Modify
Remove
|
Thanks to those that replied to my posting. I have tried everything that I could think of. I was a regular on this site back three years ago, so I picked up a few tricks here and there. When my remedies didn't work, I tried the tricks I picked up here. Nothing worked. I can't get oxygen but even if I did, during my last cycle, I had a doctor put me on some oxygen and it didn't help a lick. I tried hot sauce this morning and all I got out of that was a tore up stomach on top of the CH. I tried the cafergot last cycle. The only thing I have found so far that worked for me was Imitrex injectibles. I tried the pills first, then the nasal spray but they didn't even faze the beast. The injectibles though, whoooo, I fell in love. The first time, I took a shot and less than five minutes later I was pain-free, I was amazed to say the least. My neurologist had given me a few samples, and when they were gone I called him for a scrip of it. When I went to pick it up at the pharmacy, the lady told me the total was something in the neighborhood of $350 for two doses!!! I informed her that I had a prescription plan and she said she was aware of that and that my insurance did not cover injectible medication. Not being made of money, I had to decline the transaction. I called my neurologist to inform him of my predicament, and being the saint that he is, told me to come to his office and he would hook me up. Doing the math on the pharmacy prices, he gave me over $1000 worth of Imitrex. By the time I ran out of those my cycle was over, for THREE glorious years. Now I have no insurance and the only job I could find for the time being is a measly paying job, so I can't really afford to be going out buying stuff that may or may not work. If I get another one tonight (that will make 7 so far in a 24 hour period) I am going to give up and go into the ER and pay well over $1000 for some doctor to tell me I have CH, after sitting in the waiting area for two to three hours with screaming kids and such. But if he gives me some Imitrex and something to knock my ass out (I haven't got any good sleep for around a week now) then it just might be worth it.
Don't worry, Maria. I WILL NOT let this get the best of me. It's just in the middle of a CH, I wish like hell I could just die. Anything to make it all stop. I wonder what we all did in our previous lives (if such a thing exists) to deserve such hell on earth.
Thanks for your concern and your help. I wish you all many pain free days and nights as well. I'll pop in soon to see how everyone else is doing. This time even after the cycle is over I will come back often. Sorry for not thinking of y'all when my fight was over. You really did help me through alot three years ago.
|
|
IP Logged |
|
|
|
Charlie
CH.com Alumnus
New Board Hall of Famer
Happy to be here
  
Gender:
Posts: 14968
|
|
Re: back again after three years rid of the demon
« Reply #4 on: Aug 14th, 2002, 10:24pm » |
Quote Modify
|
Sorry Evilbob but here is my thing. The price is right and good luck. It worked very well for me:
Dr. Wright's Circulatory Feedback
This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been very helpful to many.
When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand.
This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time for this to take hold but when this works, the relief is almost immediate.
I learned this from the doctor in a few minutes. He simply told me to concentrate on keeping blood away from the head. He thought the easiest is the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. I like to keep at it a few minutes longer than seems necessary to insure success.
This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience.
When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance.
I wish you the best of luck - Charlie Strand
|
|
IP Logged |
There is nothing more satisfying than being shot at without result---Winston Churchill
|
|
|
Drk^Angel
Guest
|
|
Re: back again after three years rid of the demon
« Reply #5 on: Aug 15th, 2002, 12:19am » |
Quote Modify
Remove
|
Welcome to the board! Take ya coat off, put ya feet up, and stay a while... Or else we'll nail ya to the chair! Hang in there. We're behind ya all the way. You'll make it through.
PFDAN.......................... Drk^Angel
|
|
IP Logged |
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss