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        New Message Board Archives >> 2006 General Board Posts >> Just Want To Spout Off
        
(Message started by: noranate on Dec 29^th, 2006, 11:23pm)

Title: Just Want To Spout Off
Post by noranate on Dec 29^th, 2006, 11:23pm

Just want to spout off about my doctor. My daily/weekly schedule goes like this. I average 2 to 6 of these damn things a day at my worst. I am on verapamil neurontin lexapro and Imatrex. You can only take 2 shots a day of imatrex so I have to some how try and pick which two headaches of the day are going to be the worst. Now my doctor says that I am only to take the imatrex 3 days out of the week after taking it daily for 8 months so now I am able to only treat 6 headaches out of the average of 21 I get a week. I use oxygen at home but it really does not work for me unfortunately. It does relax me but does not abort the headache. I am unable to use it in work because i work in construction and it just is not feasable to have a tank with me and I was told by the GC that due to all the welding going on at the job a open tank of O2 would be a really bad idea. My primary doctor has prescribed me 5 miligram percocet that I can take during the day once I have reached my max dose of imitrex but as we all know that does crap. It calms me down but the pain is still there. It does allow me to keep working so I dont lose any money. The catch there is he wont prescribe more that 15 per week with the recomended dose being 2 every six hours. So that is a three day supply. So some how I have to make those last. So I asked my imitrex precribing doctor what i am supposed to do at night when I cant take imitrex the o2 isnt working and I need to save the percs for the next day so I can struggle through work to support my family and he prescribes me stadol nose spray. I can use that once a night. The does is one shot in the nose per night max. It gets me so high that all the pain from the headache is still there but I dont have any control over my motor functions to get up out of bed to react to my urges to move and rock that I get with these things. Now thats a horrible feeling. So his final answer is increasing my verapamil again for the 5th time so I can deal with the headaches more frequently and the side effects of the verapamil. Now he says he forgot to tell me that I was not supposed to take the imitrex more that 3 days a week and that I am seriously endangering my self not to mention all the rebound headaches I proably have caused my self. Now this "expert" makes $180 hour and I am no better off than before I ever started going to the doctors. Well thats it for my bitching. Thanks for listening. I hope not too many of you have had similar experiences. Happy New Year everyone.

Title: Re: Just Want To Spout Off
Post by Kevin_M on Dec 29^th, 2006, 11:59pm

on 12/29/06 at 23:23:22, noranate wrote:

So his final answer is increasing my verapamil again for the 5th time

I don't know what you were taking or what it is now going to be but for the first many years without prevention, adequate amounts of abortives were always the problem and I remember them well, not preferrably at all though. Prevention was the only turning point, working on that.
I hope the verap works for you, it will take time before any difference may be noted if it is effective for you.

I got lucky, though I still use trex and oxygen at varying times the CH fluctuates. Best to you with finding prevention, a more understanding doctor in the meantime would be valuable.

Title: Re: Just Want To Spout Off
Post by Opus on Dec 30^th, 2006, 12:05am

on 12/29/06 at 23:23:22, noranate wrote:

You can only take 2 shots a day of imatrex so I have to some how try and pick which two headaches of the day are going to be the worst. Now my doctor says that I am only to take the imatrex 3 days out of the week after taking it daily for 8 months so now I am able to only treat 6 headaches out of the average of 21 I get a week.

See the imitrex tip on the left. If you can get the vials and needles and that makes taking 1/3 shots much easier. That will give you 6 shots instead of 2.

O2 isn't good with my job either, leave it at home and use it for night time hits.

Paul

Title: Re: Just Want To Spout Off
Post by Kevin_M on Dec 30^th, 2006, 12:29am

on 12/30/06 at 00:05:38, Opus wrote:

All good advise!

With verap, for me, right now 600mg is essentially needed. Even at 480, there seems to be little help at all. It's like there is suddenly a threshhold of effectiveness that happens at a certain point, but not anywhere below that certain dose.
For me, decreasing at the wrong time, going even a little below what is doing the job, has frequent repercussions and takes too many days to correct again when I get the brains to figure out to get back to what was working and leave it alone. Seems I have to always test what is the minimum dose needed when things are going ok. It can be surprising how slow I am to learn, and damn repetively too. But there appears a sudden threshhold as to what works and what will not when utilized slightly below an effective level.

Title: Re: Just Want To Spout Off
Post by taraann on Dec 30^th, 2006, 10:02am

Have you ever tried a steroid taper? Prednisone sometimes will give a much needed break, or at least slow down the CH a bit. It's about the onlything that gives me a break.

As for stadol, I've been on that. I won't touch it anymore. You can build a very high tolerance to it very quickly. I was on it for months once and at one point was prescribed one squirt up each nostril. When it did nothing for me at all (in the beginning for me it took the edge off) I stopped taking it and went through some pretty crappy withdrawals. Personally I think it can be good for a short term use but not for day in and day out clusters.

Title: Re: Just Want To Spout Off
Post by Charlie on Dec 30^th, 2006, 4:29pm

The others know what they are talking about. Pay attention. I can contribute this: (It might be good for work, especially)

Dr. Wright’s Circulatory Technique:

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.

Charlie

Title: Re: Just Want To Spout Off
Post by Callico_Kid on Dec 30^th, 2006, 5:02pm

When I was using verap a couple of years ago it didn't work until the doc also prescribed Lithium along with it. Then I was able to get some relief, but quit using either after a while because I didn't like the side effects for the amount of relief I got. I know it works for some though, so you might talk with your doc about it.

Red Bull, or its equivalent really works to knock back a hit for me if I can get to it quickly enough. It's a lot cheaper than Trex too.

jc