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Topic: Any addvise? (Read 278 times) |
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ftblfrk
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Any addvise?
« on: Dec 11th, 2002, 7:49pm » |
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After 29 years of this BS, I am finally going to see a doctor for my clusters. Is there anything I should do before i go? What should I look for in my doctor? I just don't wanna be fu'ed around with this. I'm not a doctor person. I think most of them are just there for the money. I'm going to the Houston headache clinic. Has anyone been there? What kind of meds should i ask about or avoid? Any help with this would be greatly appriciated. Thnks.
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ftblfrk
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Re: Any addvise?
« Reply #1 on: Dec 11th, 2002, 8:02pm » |
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Kind of funny i'm repling to my own post but, It just seems to me that there is so much medication out there. It's just confussing. I'm not a big drug guy. Is any medication out there stopping the clusters all toghether? Or are they just making them subside?
(confussed and bewildered)
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OneEyeBlind
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Yea, I can do this
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Re: Any addvise?
« Reply #2 on: Dec 11th, 2002, 8:04pm » |
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Imitrex and O2 is what works for me. It works for a lot of other people on the board as well. Verapamil as a preventative as well. Good luck !!!! Let us know how ya make out. If you haven't had an MRI and possibly an MRA they should do that as well to rule out any serious problems.
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Mark C
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Re: Any addvise?
« Reply #3 on: Dec 11th, 2002, 8:23pm » |
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Howdy ftblfrk,
May I suggest that you search and print articles from this and the OUCH site. The more you are prepared the better the response from your Dr. will be. Unfortunately most Doctors know less about CH than you do so depending on the Doctor you may have to educate him, in a nice way of course. I have attached one of my favorite links from the OUCH site that gives a good overview of CH and its treatment.
http://www.clusterheadaches.org/library/general/management_of_ch.htm
There have been many threads about Doctors and their care and if you search this site you will find a lot of collective experience that will aid on your treatment.
Good luck,
Mark
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Charlie
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Re: Any addvise?
« Reply #4 on: Dec 11th, 2002, 8:44pm » |
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I know it isn't easy but maybe you will find a good doctor. In case he needs help, copy a lot of good information from this site for him. Tell him you know what this is and that you need help for CH. No doubt he'll want to do some tests. Neurological tests are boring and painless but they like to run you through them.
What follows is a technique that I and others have used with some success. In any case, let us know how you make out.
Dr. Wright's Circulatory Technique
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 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. Often, 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 but when this works, the relief is almost immediate.
I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on 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. Don’t let up until you are sure the attack has ended.
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
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ftblfrk
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Re: Any addvise?
« Reply #5 on: Dec 11th, 2002, 9:50pm » |
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I may have to go and get a med degree so that i can understand what i'm reading. lol..Or a very big dictionary
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firebrix
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Re: Any addvise?
« Reply #6 on: Dec 12th, 2002, 2:01am » |
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NO! Do not be daunted ftblfrk!!! ;D
Its all quite interesting and informed people are more difficult to deceive.
If there are things you don't understand in the CH archives and searches, just ask, and someone wll either explain it to you, or send you links to sites that will enlighten! I'll help if I can.
Imitrex injections abort most CH headaches within 15 mins, but are not preventative.
O2 works for some, but not for others. It will do no harm, used wisely. Of course, you don't want to smoke around the tank!!
Altho' you say you're not a doctor sorta person, if you are to receive any benefit from seeing one, it may be useful to listen to what this medical professional has to suggest, research it for yourself so that you're informed, and make your decision then. I wish we had done this in the early days, when all we heard from docs was that it would end soon; "Try this!" It did not end soon, and had we known then what we know now,Mopar would never have tried the cocktail of drugs of all kinds thrown at him in desperation for relief. I am yet to be convinced that all these drugs did not take him more quickly from episodic to chronic.
In my humble opinion, Try the more simple and harmless drugs first, like oxygen and the short-acting Imitrex injections for very bad times.
I wish you luck and PFDAN. Let me know if I can be of any help, and keep us posted.
firebrix
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SommelierCH
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Re: Any addvise?
« Reply #7 on: Dec 12th, 2002, 2:59am » |
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As always a double edge welcome. Sorry you had to find us, but glad you are here. Put on a hard hat, mouth guard and thigh high boots and wade right in.
What works for me is a triptan, Maxalt MLT 10mg. or Zomig ZMT 5mg. (fast acting, under the tongue dissolving tablets) combined with oxygen therapy. You can’t get many Maxalt tabs from insurance (6 per month max. for me) so you have to save those for the Big One and you can’t take more than 2 in any 24 hour period, so the oxygen is absolutely necessary for all the other times you feel the shadows creeping in. Go to the search button in the top right corner and type in “oxygen” and read up. This site is your one stop information resource, so start reading all the categories on the left hand side of the page, read it all, the more knowledge you have the better you can communicate with the medical community. Be sure to read about and do a search for “triggers”, these are catalysts that can really set us off. My triggers are alcohol (even the smallest amount, like a non-alcoholic beer) and bright light in my right (cluster side) eye. When I feel the shadows creeping in I hit the Oxygen and that pushes them back. However, when I’m asleep I can’t feel the shadows increasing and I wake up with the Big One. Jonny clued me in that if you take abortive triptans (I use Maxalt MLT 10mg. or Zomig ZMT 5mg., both are quick dissolving tabs) before going to bed, they can prevent that night time attack, especially if you get hit, like I do, within 2 hours of going to sleep. The half-life of both of these tabs is in the 2-3 hour range. This has enabled me to get quality sleep these last 2 weeks. (thanks again, Jonny). Avoiding triggers during your cycle can dramatically affect the intensity, duration and number of attacks.
The cumulative amount of knowledge residing within these people on the board, is amazing. Give them as much info about your problem (see “Hints for your first post”) and they will be able to help that much more.
Good luck, friend,
David J.
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