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Title: I can't believe that I am not alone! Post by IndianaJohn on Jul 17th, 2004, 10:00pm Hi, I am new here. I have been suffering with CH for 12 yrs now. Usually the cyclical kind. This last cycle has been going on since May. I usually just tried to fight them off or suffer through it. But a couple weeks ago they became so severe that I started using my nasal sprays (Imitrex). I usually have to take one a night, right around 11:07 pm. I am so tired of being tired. So tired of not being able to sleep, being afraid to sleep. I found out today that my insurance company would only approve one box (6 doses a month) and I was just crushed. I called the company, luckily they were open on weekends and found a way to work around the limits. But come on, 6 doses a month, what a joke. I also take Verapamil, but it doesn't seem to be working any more. I am not sure what to do about that. I have to educate my GP about CH since he knows so little about them. I am usually the one to come up with the treatment plan and he goes along with it. The shadows have been following me for weeks now. What a wonderfully apt name for them. And the beast is slapping me around every night. It has gotten so that I am getting a couple of headaches a night. A couple in the evening the the big one during sleep. I sometimes think of the pain as being in a box with the walls, ceiling and floor nothing but pain. Light hurts. Sound hurts. Everything that passes through becomes distorted. My wife can make the kindest of comments and it comes across as condemnation. I can make the most innocent request and it comes across as criticism. She is the only one that shows me any compassion. My teenagers just don't know how to deal with it so they don't. I apologize if this post is a little disjointed. Exhaustion and the shadows are with me now and thinking straight is kind of difficult. It's so good to know that others are going through what I am. I have never even met anyone who had this. The water thereapy sounds promising. I have noticed that the more dehydrated I am the more intense the headaches. I'm so tired. I haven't right slept in weeks. Hopefully tomorrow I will be able to get the medicine. I have one nasal spray left and I will probably have to use it tonight. If I am not able to get my meds the I will be truly doomed..... If you have made it this far through this post, I am grateful. I will check in again tomorrow. I hope some of you can get some sleep tonight, I know that I will not, and I am dreading it..... IndianaJohn |
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Title: Re: I can't believe that I am not alone! Post by BobG on Jul 17th, 2004, 11:09pm Hello John, Welcome to the board. Wish you didn't have any business here. You told a story that have been told a thousand times over the years. We do know what you're going through. And it sucks! About the imitrex, 6 doses a month. Yep. That may be the biggest complaint you'll hear here. The stuff is expensive and insurance companies don’t like paying for it. It was originally made for migraine headaches and the insurance companies are sticking with that out-of-date thinking. It has been approved for cluster headaches but because of the cost the insurance companies don’t want to recognize it. How did you find a way around the limits? About the verapimil……..how much are you taking? Some people are taking as much as 800+mg a day. Some are taking lithium with the verapimil. Talk to your doctor about it. About your wife and kids. This board has a Supporter’s Corner. There are some wonderful people there that your wife and/or kids can talk to. You can try talking to your family about your pain but do it at a time when you are not in pain. Explain what you go through and what you need them to do or not do during an attack. Educate yourself and then educate your family. Look under all the buttons on the left side of your screen. Stick around here. We know what you are going through |
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Title: Re: I can't believe that I am not alone! Post by IndianaJohn on Jul 18th, 2004, 11:05am Hi Bob, and thanks for the welcome. I actually made it through the night without waking up. What a releif! I did something a little out of the ordinary. The beast came back around 10:30 last night and instead of using my nasal spray, I used an 50mg Imitex pill instead. It took longer to work, but I wanted to save my last nasal spray for when I was sleeping. Once the beast left I went to sleep and the beast didn't return. I am wondering if taking that pill is what did it. Has anyone ever used the Imitrex 50mg pill before bed and not gotten a headache? As for the limits on the insurance. Most companies have a appeal process in place (depending on the company). It usually takes a fax or call from the doctor or pharmacist to the insurance company to get it to go through. Though you must be specific in stating that it's for CH, otherwise they will deny you. Several years ago, I was gettin Imitrex from a mail order pharmacy and they denied me. Then I called them and talked to their pharmacist and was told to have my doctor fax them a letter with the reason and dosages. The insurance company squeeled quite a bit, but I received a three months supply for about $60. It also helps when talking to the insurance if you state that without the medicine you will be forced to go to the ER. They hate paying for that more than paying for the meds. The $10 coupons from Imitrex.com help too. I am currently taking 480mg of verapamil a day. Divided between two doses, morning and evening (240mg each). I am so grateful to have someplace to talk to prople about this. This is a buden I have been carrying alone for quite some time. Men aren't supposed to complain about pain are they? Well it helps just knowing that there are other people out there. One last thing. I have noticed that if I let myself get agitated or give in to the pain that the beast gets worse. By staying calm it seems that it keeps the beast from taking complete control. I rock quite a bit, but if I panic or let my pain get the control of my mind that the pain gets much worse. It doesn't make the pain go away, but it seems that the pain is less than it could be. I usually sit and rock and try to concentrate on relaxing or stretching muscles (perhaps this is a little biofeedback?) in my face and neck, since they are the ones that seem to cramp up. Doesn't help with the pain around the eye or forehead. Anyone do anything similar? Thanks again..John |
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Title: Re: I can't believe that I am not alone! Post by Rock_Lobster on Jul 18th, 2004, 12:00pm Heya IJ... Yes, the Trex Nasal limits suck. What I use is Trex injections... vials and syringes. Insurance pays for 16 vials/month. I get about 3 doses out of a vial (.125ml pre dose is all I need). That would get me through 48 in a month. That said, Topamax keeps me CH free, so I have quite the little stockpile of Trex vials. You need a prescription for o2. o2 works for many as an abortive. Give that a crack. (oh... Trex == Imitrex) Best of luck, Lobstah |
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Title: Re: I can't believe that I am not alone! Post by BobG on Jul 18th, 2004, 7:46pm Quote:
A couple of tricks many use to get through the night...... Melatonin before bed time. Dramamine before bed time. Sleep with the head elevated or sleep in the La-Z-Boy. Quote:
We all do. We also pace, scream, run and bang our head on the wall. Some even attempt, God forbid, strenuous exercise. LOL Quote:
For me it's ice packs. Right on the eye! The colder the better. More than once I've had an ice cube frozen to my eyelid. But the pain from freezing flesh is nowhere near the pain of the cluster pain. |
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Title: Re: I can't believe that I am not alone! Post by Kris_in_SJ on Jul 18th, 2004, 8:17pm Hi John (or Indiana?) So sorry you have to be here, but you'll find the greatest group of supporters possible - all willing to share their knowledge and cluster buster "tricks." A couple thoughts for you. First, I'll say that I also have chosen to stay with my GP - he listens, reads what I bring him, and is willing to follow my suggestions. But I've also seen a neuro who specializes in clusters - maybe you should consider that too. As new treatments become available, a good neuro will probably be the first to know about them (besides you, of course). Second, you might need to up the Verapamil - cluster sufferers can take really big doses (up to 800mg/day), but you want to be sure that you wean off it when you're not in cycle. Otherwise, you just need larger and larger doses. Also, a Prednisone taper can work wonders for stopping CH. For some it can totally stop a cycle. For others (like me) it works really well at stopping the HA until the higher doses of Verap kick in. Imitrex injects are my abortive of choice, but many, many sufferers swear by Oxygen. Were I you, this would be my next request to GP. Read the posts by Superpain - he's the resident expert on O2. There's no limit on how many times a day you can use it, and no side effects! Keep us informed, read and learn all you can and ... NO, you are definitely not alone! Hugs and best wishes, Kris |
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Title: Re: I can't believe that I am not alone! Post by UN_SOLVED on Jul 18th, 2004, 9:27pm John, Welcome to the boards ! Sorry for the reason that brought you here. Look everyone .. I'm NOT the only person from Indiana ! ;;D Unsolved (fellow 'hoosier' and CH'er) |
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Title: Re: I can't believe that I am not alone! Post by Kris_in_SJ on Jul 19th, 2004, 7:57pm Good for you Un_Solved! Just remember, we Michiganders aren't far away either! Hugs, Kris |
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