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Topic: Hey everyone...... (Read 408 times) |
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eyhavhedaches
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Hey everyone......
« on: Dec 21st, 2004, 1:11pm » |
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Wow, what a season so far! I have not been on for some time due to my clusters, I have had it real bad so far this year. It started out real light and then december hit and boom 3 to 4 a day. I have had three emergency room visits this year already one due to passing out because the pain was so bad. They are now considering taking my drivers license away because of the fact that I passed out. I am also into my third week of medical leave from work, I have not beable to get out of my house due to the recurrent attacks. I get up cluster headache and than it's right back to bed. They have raised my doses of verapimil and depakote, the prednisone taper was ineffective yet again. The only thing that saves me is my immitrex injections! They wipe me out though normally have to go back to bed right after taking one. My insurance company is fighting me on paying for oxygen and it's getting harder to make people understand what I am going through. God, I am so depressed and just want and long for a normal healthy life.
I sometimes just sit in a dark room pounding my head against the wall and cry like a little baby because it hurts so goddamn bad!! Why me?? The only people that truely understand my pain is my family and all of you! My docter is considering prescribing me marijuana for the nausia from the imitrex injections, never heard of this being a legal treatment. I do not think I want to go that route! Well, just wanted to update everyone on my shitty life and how much it sucks three months out of a year. Talk to you all later.
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When pain is a daily event, the smallest of things can be a miracle!
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becky8
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I haven't met you yet, but like you said we are all family, I feel your pain and I hope it gets better real real soon!
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karma
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Re: Hey everyone......
« Reply #2 on: Dec 21st, 2004, 2:11pm » |
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Sorry your having such a rough time. The ganja treatment for the nausea may make the ha's worse so be careful before you decide to go that route.
Try and get your doc. to fight for you for the 02. 02 may be the ticket to reducing the trex which may reduce number of ha's. You are in charge!
Go to the the meds and treatments board and read up on the shroom treatments. There are a couple pretty good threads about it.
I know it may be hard but get out of the house and try and get back to normal life as much as possible. Don't let the headaches run your life. You are in charge!Good Luck
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| « Last Edit: Dec 21st, 2004, 2:12pm by karma » |
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floridian
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There are a few states (mostly western) where doctors can prescribe marijuana for medical purposes, and the state and local officers won't bother those patients. It is pretty much up to the doctor, but the common reasons are to prevent vomiting/nausea, to control muscle spasms, and to reduce glaucoma pressure. The feds, on the other hand, sometimes have nothing better to do than go after old ladies with cancer who are trying to keep the chemo-vomit fits from killing them.
Not sure if clusters-imitrex-thc is a good combo. If you read the archives here, there are many people who have their cluster headaches intensified by THC. There are a few who say it has no effect, but only 1 or 2 who ever said it helped. Maybe the imitrex would block the THC intensification, or maybe not.
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Jeepgun
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So then, the only question would be, Santana's "Abraxus" album, or Pink Floyd's, "Dark Side Of The Moon"?
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Bill-G
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Re: Hey everyone......
« Reply #5 on: Dec 21st, 2004, 3:13pm » |
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Sorry to hear your having such a problem and are here.
I'm new to ch and like you have found this site to be a haven of sanity..and help. Hope something works out for you soon.
On the O2 issue. If your doctor is willing to prescribe it you might consider paying for a small bottle. I think its an E2 or something like that. Only about 30 inches high,and slightly less than 4.5 in wide. The bottle would only hold enough O2 for and hour or so depending on the flow rate prescribed and would be an out of pocket expence of less than $100. Just got one for when I'm away from home. If it works the insurance company can be given the option..pay for X number of trex treatments or Y( some number less than would otherwise be needed) One week of trex would buy a bunch of O2!
Hope your feeling better soon.
Take care
Bill
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Had heard about CH and wondered if anything could posiiblly be all that bad. Seriously thinking of having idiot tatoo done on my forehead now
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nani
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Re: Hey everyone......
« Reply #6 on: Dec 21st, 2004, 6:14pm » |
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Others may come and go, but MY power is MINE.
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don
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Quote:| never heard of this being a legal treatment. |
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Marinol.
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Charlie
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Re: Hey everyone......
« Reply #8 on: Dec 21st, 2004, 11:16pm » |
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Damn. Real sorry you're having such a time. All I can think of is to try this techinque. It gave me lots of relief most of the time. It has worked for some but I wish they were posters.....
Dr. Wright’s Circulatory Technique
What follows is a technique learned from a neurologist:
I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.
I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.
Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.
This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
I hope this technique is helpful and I wish you the best of luck
Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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cootie
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Re: Hey everyone......
« Reply #9 on: Dec 21st, 2004, 11:44pm » |
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Man pot may give you ha's......or make you more paroniod of the attacks. Not got nuthin against it......everyone is different. Got freinds that smoke ta keep glucoma at bay. Who knows. Either that or you'll crave entire bags of oreo's. Munch mania Pam
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Cause and Effect......"Cause is the effect concealed, Effect is the cause revealed"
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Jeepgun
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Doritos, Pam. Doritos.  
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eyhavhedaches
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Re: Hey everyone......
« Reply #11 on: Dec 23rd, 2004, 12:52pm » |
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Great news........ how do you spell relief??? Oxygen!!!! My insurance company will now cover the oxygen after a lengthy battle. My docter called them again this morning while I had my visit with him. He told them that they were holding up my treatment and that they were just plain stupid not to see the benefiets of covering the oxygen. He explained to them that right now in order to get oxygen that I have to go to an emergency room. So he told them to do the math. Plus not to mention the benefiet of reducing the amount of imitrex I will need to use due to the fact that I will have the oxygen at bed side. So, my oxygen is on it's way as I write this! Finnally I am getting some where! I would like to thank this website! For it was your section on h20 that I printed up and gave to my docter!!!
Finnally even though my clusters are still going strong I am not so depressed today because of the fact that maybe.. just maybe I will beable to control them better with the oxygen. Advice for those who have insurance companies that give you a hard time about covering medications for clusters, FIGHT THEM!!! You pay them money and they need to help you! Do not take no for an anserw. It took me three months to get them to cover my immitrex and almost 5 for the oxygen. Most important is that your docter needs to be active in helping you with the fight, have him fill out a letter of predetermination and send it to your insurance company. Also have him fax the insurance company a letter of medical necessity!!! KEEP FIGHTING!!! Sometimes for us to fight back is hard because we spend most of our lifes fighting this horrible desease, however do not give up!! If you have a docter that does not listen to you, fire them and get another one! It is so important that you have a docter that will let you help make the decisions in your therapy. Tell them what works and what don't, make them understand. You would be surprised how many docters out there do not have alot of knowledge about what we are suffering from, or even how to treat it. I am lucky, my docter is willing to learn with me and he was so thankfull for me bringing him in the information on the h2o from this site. I am frightened about the public knowledge of what we have to go through. It is little next to scarce. There must be something done to bring to better light about our disease and to raise awarness to the general public as well as to employers and docters. How much government funding is being allocated to researching this disease and is it taking a back seat to other disease research. Whats going on with the national pain care act bill, is it still stalled in the house of reresentatives??? As sufferers form this disease we need to be the most active in getting people educated on our disease!!!!!
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When pain is a daily event, the smallest of things can be a miracle!
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Langa
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Re: Hey everyone......
« Reply #12 on: Dec 23rd, 2004, 1:36pm » |
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on Dec 22nd, 2004, 8:40am, Jeepgun wrote:| Doritos, Pam. Doritos. |
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I was more partial to Twinkies 
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