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Topic: Dont know what 2 do 4 the best (Read 329 times) |
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Itz_Me
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Dont know what 2 do 4 the best
« on: Apr 10th, 2005, 12:31pm » |
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I really dont know what to do for the best!
Ive been taking varapamil even though its against the doctors wishes, as i cant go on any longer in this much pain getting more and more attacks a day.
ive been taking imi and o2 for every attack but they dont get any better as im actually getting more attacks everyday.
Im not coping at all, I feel like a vegtable, im not going out far incase i get an attack and because im getting more each day i dont know when the next will come.
Because im getting alot of shadows and find it hard to sleep ive been taking tramadol but its only taking the edge off the pain.I'll take my imi as soon as I get hit and then use o2 until the pain goes altogether and this can take up to an hour.
I spent most of yesterday being sick and im not sure why perhaps its because im not coping with the pain very well or because of all the drugs im taking.The doc has told me not to use the varapamil as they think they have found an abnormality on my ecg test but im so desperate to stop having these attacks ive been taking them. I have a few weeks until i see my neuro which seems like a decade away, i dont know what to do for the best.
please can anyone give me any advice?
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KMT
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Re: Dont know what 2 do 4 the best
« Reply #1 on: Apr 10th, 2005, 12:41pm » |
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Itz_me
Seems like you are having a very ruff time. I am so sorry to here this. Your Dr. has a point with the Verap. I would tell you to try Kudzu that would be a similar issue like Verap.
Some have luck with heat/cold. I take a hot shower to take the edge off.
What is your liters on the O2 and is it a tank or concentrator?
Have you tried Melatonin for sleep?
I am not a ton of help I am still struggling with it myself. I only what is working for others and I am spreading their word.
We are all different. Don't give up...
PF wishes and vibes coming your way...
Kim
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Itz_Me
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Re: Dont know what 2 do 4 the best
« Reply #2 on: Apr 10th, 2005, 12:51pm » |
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hi kim
Thanx for your advice. I usually turn me o2 up to 12 ltr per min for about 15-20 mins and have imi shot before starting the o2. Rocking back and forward relieves my pain slightly but only while im doing it. Ive not tried anything hot as when im too warm my pain seems to either start or get worse but ive not tried cold things either. Perhaps if I have a cold drink, do you think this could help?
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KMT
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Re: Dont know what 2 do 4 the best
« Reply #3 on: Apr 10th, 2005, 12:57pm » |
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Cold may help you. Try an icepack to the affected side of your head till pain subsides but no longer then 20 min. (don't want frost bite)  Some have said that eating or drinking something cold helps. Can't hurt to try.
I am just the opposite cold is my trigger along with count less other things. I can link some attacks to some smells. So I plug the nose or stay far away. It doesn't always happen that way and it doesn't always work but it is all worth trying.
I always say what do we have to lose..... 
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Itz_Me
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Re: Dont know what 2 do 4 the best
« Reply #4 on: Apr 10th, 2005, 1:18pm » |
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Thanks kim i'll try the ice pack, im so desperate to stop getting hit as the pain gets worse everytime i'll do anything. I will end up jumping in the freezer!! 
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KMT
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Re: Dont know what 2 do 4 the best
« Reply #5 on: Apr 10th, 2005, 1:30pm » |
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Good luck and feel free to IM me any time ok.
Keep us posted on how you are doing.
On Mon. more members will be back and they might have some advise as well so check back ok.
Gotta go to work talk with you later...
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Jeepgun
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Re: Dont know what 2 do 4 the best
« Reply #6 on: Apr 10th, 2005, 1:58pm » |
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Hi there!! I'm so sorry you're having such a rough time. You mentioned that you're using the Imitrex/Imigran shot everytime you get a cluster headache, and THEN trying O2. Um... Look: If you insist on using Imitrex/Imigran, use it as sparingly as possible. Nearly everyone agrees that Imitrex not only causes rebound headaches, but also lengthens and intensifies cycles. Imitrex, if you are going to use it, should your LAST RESORT, rather than your FIRST.
Your FIRST option should be the oxygen, and use it AS SOON as you feel a hit coming on. If you wait until you're in the middle of a hit, all you're doing is wasting the oxygen.
Save your Imitrex for the really MONSTER hits. In fact, if you can avoid using it all together, this would be your BEST bet.
Have you tried kudzu? I think Helen (LeLimey) knows where you can get it on-line, and it has worked wonderfully for a lot of people, myself included.
Imitrex/Imigran: I will tell you this: I will NEVER touch that stuff again. The way it made me feel, the shadows that hit the next day, the intensified hits, the prolonged cycle... It's not worth it. Yes, it brings temporary relief, but it's a deal with the devil, and it's very bad for your heart. Again: If you must use it, let it be your last resort. LAST.
When you have one of those rare hits that begins to radiate down into your molars and crawl down the back of your neck: Those are the ones I used Imitrex for. Otherwise, try the O2, pacing, deep breathing, whatever...
And if your physician took you OFF of verapamil, s/he did so for a reason. Continuing to take it against professional medical advice is the wrong answer. There are other preventatives and abortives out there. Research them. Dig around on this board. My personal advice is this: Steel yourself and become determined that you are going to get OFF of the Imitrex as soon as possible.
I hope you gain some relief soon. I hope I've been able to relay to you just how strongly I feel about Imitrex/Imigran. I am not exaggerating or engaging in hyperbole, here. Also, make a new appointment with your doctor and find some alternative to verapamil. Also, be sure to ask her/him WHY you aren't able to remain on the verapamil.
My best to you,
-Frank
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Itz_Me
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Re: Dont know what 2 do 4 the best
« Reply #7 on: Apr 10th, 2005, 2:33pm » |
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hi frank
Thanx for your advice.
The reason my doc told my not to take the verapamil is because when the nurse did a ecg test she told me my heart missed a beat.
I had by this time already had two doses of verapamil, 2x80 doses. Perhaps the verapamil made my heart miss a beat, im not sure.
I am still taking it because im not at all coping with the amount of pain im in when I get hit, im getting hit 5 x day now.
I do feel like a coward, I should be coping better.
Im new to this amount of pain and will do anything to get out of it. The imigran helps because when I get hit within 15-20 mins my pain has normally gone, plus I use 02 with the imigran.
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Jeepgun
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Re: Dont know what 2 do 4 the best
« Reply #8 on: Apr 10th, 2005, 3:24pm » |
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on Apr 10th, 2005, 2:33pm, Itz_Me wrote:| Im new to this amount of pain and will do anything to get out of it. The imigran helps |
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Okay: Maybe you missed the part that I wrote about Imigran (Imitrex, on this side of the pond) prolonging and intensifying cycles.
So, have you given kudzu a try?
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Itz_Me
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Re: Dont know what 2 do 4 the best
« Reply #9 on: Apr 10th, 2005, 4:08pm » |
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Yes, well i started taking kudzu.
I had 2 in the evening when helen brought them round for me then 2 the nx morning but for some reason all day yest i was sick at least once every hour. Im not sure why I was so sick but because of that I have not been able to take any more, thinking I wouldnt keep them down.
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nani
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Re: Dont know what 2 do 4 the best
« Reply #10 on: Apr 10th, 2005, 4:23pm » |
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I'm not sure it's wise to take kudzu at this point if you are still using Imitrex and your not sure if you should take verapamil. Have your dr tell you why you shouldn't take verap. Kudzu has a calcium channel blocking properties, like verap, although the effect seems to be slower and more gentle. I'm really sorry you're suffering so much. Imitrex is very hard on the heart. You should discuss this with your dr, as well. Hang in there...it's hard, but it won't kill you. Hugs and pain free wishes, nani
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pubgirl
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Re: Dont know what 2 do 4 the best
« Reply #11 on: Apr 10th, 2005, 7:12pm » |
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Are using the right mask with the 02?
Also, how are you getting the right flow rate and the amount of 02 you need for multiple attacks?
Wendy
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Jeepgun
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Re: Dont know what 2 do 4 the best
« Reply #12 on: Apr 10th, 2005, 8:19pm » |
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on Apr 10th, 2005, 4:23pm, nani wrote:| I'm not sure it's wise to take kudzu at this point if you are still using Imitrex and your not sure if you should take verapamil. Have your dr tell you why you shouldn't take verap. Kudzu has a calcium channel blocking properties, like verap, although the effect seems to be slower and more gentle. I'm really sorry you're suffering so much. Imitrex is very hard on the heart. You should discuss this with your dr, as well. Hang in there...it's hard, but it won't kill you. Hugs and pain free wishes, nani |
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Good points, Nani.
Agreed on the O2 administration, as well. 12-14L/min, with a non-rebreather mask.
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| « Last Edit: Apr 10th, 2005, 8:20pm by Jeepgun » |
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Gator
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Re: Dont know what 2 do 4 the best
« Reply #13 on: Apr 13th, 2005, 12:42pm » |
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on Apr 10th, 2005, 12:31pm, Itz_Me wrote:
Because im getting alot of shadows and find it hard to sleep ive been taking tramadol but its only taking the edge off the pain.I'll take my imi as soon as I get hit and then use o2 until the pain goes altogether and this can take up to an hour.
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Are you saying you use O2 for an hour at a time? If so, you shouldn't be doing this. While O2 is almost side effect free for short periods, using it for long periods of time can scar your lungs. If it hasn't worked in 15 - 20 minutes, it's probably not going to work. If you are getting relief after an hour, I doubt it is the O2 doing it.
I am sorry you are going through such a rough patch. Please be careful about what you take and how you take it. We'd kind of like to keep you around another day or three.
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pubgirl
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Re: Dont know what 2 do 4 the best
« Reply #14 on: Apr 14th, 2005, 9:58pm » |
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Wise words all of you. Same advice given on UK board, abnormal ECG's + Imigran + Verap + excessive 02.
Not good!
W
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