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Topic: thanx for your responses but i still need help. (Read 340 times) |
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Nemissess
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thanx for your responses but i still need help.
« on: Apr 8th, 2004, 4:42pm » |
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[flash=200,200][/flash] 
Thanx so much for those who send me responses to my last post ! 
but i still have questions some say to go see a Neuro. why??? is there something i dont dont know about that could be wrong with me????
also some say to try heat well..... when i have an attack i have hot flashes and i feel like i am boiling but when i check my temp it is 2 to 3 degrees below norm. is that supposed to happen?
also o2?? where in the world can i buy that and what are the dangers? i know i sound like a pest but i dont know who else to ask no one else i know has this prob.
until i came here i felt so alone and scared thankyou to all for your info and support. Mike
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Virginia
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Re: thanx for your responses but i still need help
« Reply #1 on: Apr 8th, 2004, 5:10pm » |
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on Apr 8th, 2004, 4:42pm, Nemissess wrote:[flash=200,200][/flash]
Thanx so much for those who send me responses to my last post !
but i still have questions some say to go see a Neuro. why??? is there something i dont dont know about that could be wrong with me????
also some say to try heat well..... when i have an attack i have hot flashes and i feel like i am boiling but when i check my temp it is 2 to 3 degrees below norm. is that supposed to happen?
also o2?? where in the world can i buy that and what are the dangers? i know i sound like a pest but i dont know who else to ask no one else i know has this prob.
until i came here i felt so alone and scared thankyou to all for your info and support. Mike |
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Mike,
You need to see a neuro so he/she can rule out everything else besides clusters. We are not Dr's here so we don't feel that we can responsibly diagnose others. Only a neuro can properly diagnose you (hopefully) and prescribe the needed medications.
As far as the ? about heat...some people like heat, while others prefer ice. There is no set remedy for all with clusters. When my clusters hit I break out in a sweat and my skull gets really HOT so I prefer ice packs.
O2...no dangers, unless you light up a flame around it...NOT A BRIGHT IDEA! Go to the DR, get him to write a scrip for it. Do you have insurance? Most insurances have at least partial coverage for "durable medical equipment" and oxygen falls in that category. I'm one of the lucky ones, my insurance covers it 100% and it comes from a medical supply company. They deliver it every 2 weeks.
There, I think I covered everything.
Good luck,
Virginia
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The Clusterhead formerly known as 9erfan.
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firebrix
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I must never weaken.
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Re: thanx for your responses but i still need help
« Reply #2 on: Apr 8th, 2004, 5:44pm » |
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Sorry, Nemissess but I didn't hear your last post, but bet you played it perfectly!I am far from the best to advise you as I am only a supporter, but we are both awake at the same time. Later others with more experience of the USA will come and advise you.
Please check out the Oxygen button on the left of your screen. There, you'll find everything you need to know about O2.
Its a good idea to see a neuro, because CH is often misdiagnosed by GPs and other medical professionals. Neuros also help GPs to prescribe drugs that may help in the correct quantities and you as the patient, know that you have an expert on the job. Check out the OUCH US site for neuros in your area - you'll find a link to OUCH near the O2 button.
Where some CHers are helped with heat, others are helped by cold. The killer about CH is that what works for one, may not work for another. This is true of hot/cold, drugs prescribed and many other features of this complaint. It is a good idea to read as much of the site as you can and learn from the experiences of others. Check out the archives, search and generally get as informed as you can. This will help when you get to see a neuro as you will be better informed to ask the right questions.
BTW - you don't sound like a pest to me! You sound just like I did, curious and fascinated that DJ has supplied such a mine of information with this site, and keen to learn.
Wishing you all the best and PFDANs
firebrix
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"All that it takes for the triumph of evil is for good men to do nothing."
Edmund Burke
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FZfan
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Re: thanx for your responses but i still need help
« Reply #3 on: Apr 8th, 2004, 6:38pm » |
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Mike, welcome.
I'd like to post something helpful for you, but Virginia and Firebrix covered every point that I would have contributed quite well, so I won't repeat them, other than to also highly recommend O2, and mention that you can get O2 without a script but you have to go the welder's O2 route. Lots of info is available on that option here.
Anyone who says they never felt scared or alone at some point when they had these is lying. Don't feel bad about that. Anyway, since you have found this miracle web site, you are no longer alone.
Hope you get some help for this soon, and please let us know how you're doing, good or bad.
Glen
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There is no such thing as a dirty word. Nor is there a word so powerful, that it's going to send the listener to the lake of fire upon hearing it. - FZ
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HypnoticFreddy
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Re: thanx for your responses but i still need help
« Reply #4 on: Apr 8th, 2004, 10:48pm » |
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You are new and don't let the veterans scare ya's. Some of 'em scared me a few weeks ago and I have been with this site since '99.
Oxygen - A Neuro who KNOWS about CHs and a medical insurance company (most) will be able to help you get the oxygen. The doc writes a precscription just like a medicine. The thing is the prescription goes to a medical device company. It all depends on your insurance company as to how much coverage they will give. I see it is a mixed bag. But there is a KEY thing. THE ONLY WAY TO GET A CLINICAL TREATMENT USING OXYGEN IS TO USE THE CORRECT EQUIPMENT. You must, absoulutley must go over this with the doctor. My new neuro was absolutely adament about the usage of a non re-breathing mask and high flow rate regulator (>7 Liters/min). You may also need a humidifying water bottle too so you don't dry out your lungs. My doctor said it is the only way to really test oxygen as an abortive. Unfortunately 2 years ago during an episode I used a canula (nose) and a regular face mask at a flow rate of 7 L/min. I did not get relief.
Imitrex injections are, for me the best abortive. Many probably agree. The problem, as many cluster heads know is the absolute ridiculous cost ($75/shot). The insurance companies will generally pay for 2, yes 2 per month. If you get a doctor to fill out an override form, you can get 6 per month. Many cluster heads get 4-8 attacks per day. This is why oxygen is a necessity.
Go to the OUCH site and read and print out the oxygen info. Bring the literature to the doctor. Be smart and prepared to deal with a doctor who may not know much about these awful headaches.
-Freddy
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| « Last Edit: Apr 8th, 2004, 10:55pm by HypnoticFreddy » |
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Lobster
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Re: thanx for your responses but i still need help
« Reply #5 on: Apr 8th, 2004, 10:51pm » |
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Use the search features. Many others, myself included, have had many of the same questions over the years. There is much accumulated knowledge out here.
Good luck with the no-meds route. You are braver than I.
Rock
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Rock beats Scissors.
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snyder
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Re: thanx for your responses but i still need help
« Reply #6 on: Apr 8th, 2004, 10:57pm » |
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The link published above: www.maplefallswebdesign.com/misc/oxygen/oxygen/htm is non-functional (404 Not Found), which usually means there used to be a page there but there is no longer.
There are plenty of other places for the info including the tab to the left.
Bill
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| « Last Edit: Apr 8th, 2004, 10:58pm by snyder » |
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"Comedy is the last refuge of the nonconformist mind." -- Edward Albee
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Dover
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Re: thanx for your responses but i still need help
« Reply #8 on: Apr 9th, 2004, 5:43pm » |
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Nemissess,
I hear ya. Mine started the first of March and with the first one, I literally thought I was going to die. Scared the living #$ out of me. So, I go to my GP, he says no problem just migraines. Here take this. See him again three days later, I say "you got to be kidding right?" So he gives me Imitrex tabs. Great but I learn they are not for CH because they don't work fast enough. (I was chewing them to make it work faster.) Now a month and half later, I have read a library of information on CH. My GP never diagnosed me, so I kind of diagnosed myself through research. Diagn. was confirmed by neuro.
Some things that helped me. Imitrex. Double Shot of espresso (very fast acting, especially if you swish it in your mouth). I wouold order six to ten shots and put them in the thermos for emergencies. Heat pad on neck. Massages. Hot shower on neck. Staying calm. Breathing deep (hyperventalating to increase O2) to slightly dizzy stage. Staying clear of TV and loud noises. Smoking/Nicotine. Sleeping in a more up right position. Making sure the air was fresh in my room at hight.
And as I posted on the other thread, I found quinine to reduce the intensity and frequency of my HAs.
I am currently on the high end of prednisone cycle and I am feeling great. I hope it lasts.
As others said, we are all different and what helps me may not help you, but I have shared what helped me. I hope some of this helps relieve the pain. Don't be afraid, some day soon it will end and you will live the rest of your life without the beast. 
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Charlie
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Re: thanx for your responses but i still need help
« Reply #9 on: Apr 9th, 2004, 11:05pm » |
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Hope you're finding some help here. You might try some rather vigorous exercise. It has helped some. This link may help while you are waiting too:
[http://www.netsync.net/~charlies/
Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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