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Title: greetings Post by xorn on Mar 26th, 2004, 9:43pm Reposting because I left it on the wrong thread I usually just chat or mud(don't ask). So I hope I am posting this at the correct place. I have not used message boards. For the last month I have had the worst headache I have ever had. I do not get headaches but a week ago I wanted to take a hammer to my head. Literally. I went to the emergency room and set up an appointment with a doctor. I have stayed well most of my life, so I haven't had much experience with hospitals or doctors for that matter. I went yesterday and was diagnosed with this cluster f***. It hurts. I have been reading and researching it when I am able, but I am up at all times of the night. Sleeping has been a nightmare. Imitrex is very expensive. Midrin makes me sleepy. I feel lost. My partner is lost too. There is nothing he can do to help. In the information provided, I am hoping that since it has been 4 weeks, this will end soon. Average is 8 weeks, I am half way there. I want to say it helps that I am not alone in this. But it doesn't. I want to cry. I do cry. Well thanks for listening. If I posted this in the wrong place, let me know. I am not the most computer literate Xorn...aka....John |
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Title: Re: greetings Post by FZfan on Mar 26th, 2004, 11:21pm Hey john, don't worry, you're in the right place. You mentioned research. Definitely research this site, especially the menus on the left. Check out the OUCH site also. There is plenty your partner can do to help even if it seems like they can't do nothing. There is a supporter's corner here. Have him check it out, in fact, share everything you find here with him. The more he knows, the better support he can provide. You said you were recently diagnosed. You didn't say it directly, but it sounds like you've had these before? You mentioned an average of 8 weeks. Do you have relatively long remission periods, say 6 months or more? One thing I and many others recommend right up front is o2. If you've never done so, get a high flow regulator and a non-rebreather mask. Check out the link to the left for more detailed information. I've tried lots of med, but o2, applied properly, is the only thing I've found that consistently aborts the attack. It doesn't work for everyone, but it works for quite a few and there is certainly no harm in trying. If your doctor is knowledgable about CH, he should know about this. Other than that, sorry you had to find your way here but glad you found us. All the information you need to do battle with the beast is available here, the challenge is to find what works for you. Good Luck, and grab your weapons, it's time to do battle. |
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Title: Re: greetings Post by Superpain on Mar 27th, 2004, 12:29am Crying during a headache makes it worse for me. Sorry you had to come here, but you've found the right place. Get the O2 ASAP! |
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Title: Re: greetings Post by Charlie on Mar 27th, 2004, 1:50am Welcome aboard but sorry you have to deal with this horror. Here is something that I worked for me...very well most of the time: What follows is a technique learned from a neurologist: I am not sure what mechanism is triggered by this method 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 a slight expanding of the artery into your arm while at the same time literally 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 Strand |
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Title: Re: greetings Post by cathy on Mar 27th, 2004, 4:42am Hi John sorry you and your partner are having to deal with this, educate yourself as much as possible and think yourself lucky that you found a doctor who diagnosed you so quickly!!! Good advice above, good bunch of people to be around... PFDAN's to you Cathy :) |
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Title: Thanks Post by xorn on Mar 27th, 2004, 5:10am I didn't think anyone would respond. And so fast. It's 3:11 in the morning. I have taken 5 midrin in the last 5 hours, and ate an imitrex. The doctor had samples. and I am using them before I go buy the nasal spray prescribed. It's 140$ for 6 doses. I am sure you all know this. but I was stunned. How can they charge so much for something NEEDED by people? The ache is all the way down my head and now my jaw is hurting too. It does not help to rest or sit in the dark. So since we are in the process of selling our house, I filled the nail holes in the wall and touched up the paint in the hall. I was hoping it would stop by now, because I am so tired, but its not as bad as it was. Lying down makes it worse. I think I am going for the nasal spray 2morrow. The doctor said there are many things to try and some things work for some and not for others. I dread the idea of steroids. Is there a chat? I thought if I kept talking or something it might help. Anyway, I appreciate your responses. And I am glad to have found this place. I'll keep reading. John |
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Title: Re: Thanks Post by Superpain on Mar 27th, 2004, 12:08pm on 03/27/04 at 05:10:14, xorn wrote:
Because it is such a desperately NEEDED drug is why they charge so much. My mom had an anyeurism years ago and had to be on "nimidopine" (sp?)... It's an anti seizure med, and because the only people that need it, have to have it or they will die, it was over $100 a pill, and she had to take one a day for months.... >:( |
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Title: Re: greetings Post by Giovanni on Mar 27th, 2004, 1:56pm Greetings to you xorn, About the cheapest thing you'll be able to get is O2 for aborting the headaches. When that doesn't work--then to the imitrex. Click onto the O2 button on the left. Also, never leave the doctor's office without some free samples. In previous cycles I used the imitrex injections which are lighting fast <5 minutes. The tablets are too slow and the nasal spray just didn't work on me (but does on others). Go back to the old posts on melatonin. Dirt cheap over-the-counter and seems to help about 50% of us to varying degrees. I hope you find relief soon. Regards, John |
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Title: Re: greetings Post by Pegase on Mar 27th, 2004, 4:47pm Hi and welcome aboard... Are you taking some preventive medication too... Since i'm on Verapamil i feel way better and i think my cycle is near the end... It's being going on for more than 10 weeks now... Anyway u'll find a lot of info and support here... stick with us;-) Pegase |
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Title: Re: greetings Post by Luke63 on Mar 27th, 2004, 5:55pm Welcome..sorry you're here too.....but we're all in it together. Ive had Ch for almost 25yrs now...and just found out about Oxygen this time for the first time.......and boy...what a relief...don't knock it til ya try it. So frickin simple..but for alot of people...bigtime highly effective. Luke |
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Title: Re: greetings Post by xorn on Mar 27th, 2004, 7:47pm I am taking varapamil (spelling?) The blood pressure medication. I am taking it at night because it makes me feel dizzy. I have only been taking it for 3 days now. Midrin is another and helps the in and out. Is that what yall call shadows? It feels like it's coming on then it waves out. It's the worst at night. I would be worried about that but I lost my job over all of this. It was a crappy job anyway. I do not have another dr. appointment for another month. and if this doesn't work she is going to try the steroid. Is oxygen a prescription? Or can you just go get it? It is really nice of you all to give your advice. I picked up some melatonin today and am giving that a go tonight. At this point I'll try anything. I found myself saying I wish I didn't feel drugged today. My how things change in a few short years. It made me laugh John |
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Title: Re: greetings Post by Superpain on Mar 27th, 2004, 10:23pm O2 is prescription, however many of us use welders O2 with the same great success. And it's about 20% of the price of medical O2. Look up my "C*I*L*L my doctor!" thread for tons of useful info on the subject. |
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Title: Melatonin Post by xorn on Mar 28th, 2004, 3:53pm I slept last night. I really do think it helped. I woke up with the ache however. I am looking into welders oxygen as well. Praise MELATONIN! John |
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Title: Re: greetings Post by xorn on Mar 29th, 2004, 4:58am I spoke too soon. I was lookig at the pain scale, and it is 3:05 am and I believe this is an 8. My stepson and partner are asleep, and I am sitting here, tired............so tired. I think it will stop, but then it flares back to that 8. I want to talk to someone, anyone but everyone I know is asleep. Oh well. Perhaps just writing this....................... *sigh* John |
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Title: Re: greetings Post by Giovanni on Mar 29th, 2004, 8:18am Hey, Don't give up on the melatonin--it might take awhile to work. Also, experiment on the dosage. I had taken 9mg during my last cycle. Other have used from .3 to 12 mg or more. Take it at the same time each night one hour before planned bedtime. Good luck, John |
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Title: Re: greetings Post by TxBasslady on Mar 29th, 2004, 10:35pm Hi John, Welcome to the board. The others have given you very good advice. Read all you can....the info here is so valuable. The support you'll find is the best in the world. Usually someone here 24/7. Just like Motel 6........."we'll leave the light on, for ya" Good luck and stay with us. PF vibes, Jean |
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Title: Re: greetings Post by xorn on Apr 5th, 2004, 2:30pm It's been 5 days since a major one. Shadows are coming and going. I really appreciate all of your advice. It helped me so much. The melatonin has been a god send. It seems the varapamil is doing it's job. I am getting back to my life. I was wondering how I could help here? I am new to all of this, but would like to do something for the others who have this nightmare. Anyway, this place is a Godsend. John |
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Title: Re: greetings Post by FZfan on Apr 5th, 2004, 4:44pm John, so glad you're getting some badly needed relief. It does seem something is working, but you can't discount the possibility that the son of a bitch isn't naturally fading away on ya too. You should still check into getting equipped with some o2. Nice to have around for when the next one hits. How can you help here? You're already helping just by being here. Continue to relay your experiences with the beast and just hang out. I'm sure you'll find all kind of ways you can help. You're absolutely right. This place is a godsend. Glen |
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Title: Re: greetings Post by BobG on Apr 5th, 2004, 8:03pm Hey John, on 04/05/04 at 16:44:12, FZfan wrote:
Yeah, what FZfan said. |
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