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Topic: Been away for awhile need help now (Read 327 times) |
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Samiam
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Been away for awhile need help now
« on: May 25th, 2005, 7:48pm » |
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Ok where do I start. I'm a cluster head and have been in remission for almost 3 years now up until then I cycled every year for 26 years. This seemed to have been my cycle for the last 2 cycles. I'm due to come out of remission this July but I'm starting to get that jab pain behind my left eye every now and then and a funny feeling on my left side (hard time explaining this but its the feeling I get when they are about to start). I'm starting to freak out with this. You see since the last go around I now am on Thyroid meds (Levoxyl) and Klonopin .05mg at night (I when hyper last july and heart rate when over 170 so I was in ICU for 2 days) well of course the male Doc told me it was panic attacks....LOL...I'm 42 and never had a panic in my life until I went on thyroid meds. the meds where too high and since were lowered.
Since last July and even before that I have been having chest pressure which over time has been getting worse. Well it landed me back in the hospital in ICU for 3 days with a tacky HB and my EKG said Heart attack yet my bloods said no (CPK) I have no blockage it seems it's my heart going into spasm's and cutting the blood flow off to my heart when I become upset or under stress. Well here's my problem....I'm scared.....I use to use Imitrex nasal up to 2 a day and that was my life line to keep me going the 6-8 weeks that I would cycle no other meds would help and I was also on botox now I know for sure that will not be an option for me now because of the many meds that I'm on for my heart. Does any one know of any new break throughs since I last cycled? I haven't been back to my neuro and to tell you the truth I'm so sick and tired of Doc's I don't care to see another but I do have to see my MD every 6 weeks along with the Cardo. (which know nothing about cluster's) I'm on right now Levoxyl, Klonopin, Folix, Altace, baby asprin, crestor,and q10 because of muscle pain from the crestor....If these start on top of everything else I will take the bridge......Thanks for any advice or input.....Sami
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pattik
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Re: Been away for awhile need help now
« Reply #1 on: May 25th, 2005, 7:54pm » |
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O2 O2 O2-----this is one of the most benign abortives I know of, and it usually works very well for me. Check out the O2 info here on this site, and you will also find many threads that give good insights for using it properly. You will need a RX from your doc for 10-15 LPM, and a NON-REBREATHER mask. You will rest easier if you have researched as much as you can. PFDANS to you.
Pat
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The voyage of discovery is not about seeking new landscapes, it's about having new eyes--Marcel Proust
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Jonny
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Re: Been away for awhile need help now
« Reply #2 on: May 25th, 2005, 7:56pm » |
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on May 25th, 2005, 7:48pm, Samiam wrote:| Does any one know of any new break throughs since I last cycled? |
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Maybe if you stuck around and supported some folks after you went PF you would not have to ask that question.....now would you?
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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pattik
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Re: Been away for awhile need help now
« Reply #3 on: May 25th, 2005, 7:58pm » |
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A little cranky, are we Jonny 
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The voyage of discovery is not about seeking new landscapes, it's about having new eyes--Marcel Proust
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Jonny
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Re: Been away for awhile need help now
« Reply #4 on: May 25th, 2005, 8:00pm » |
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on May 25th, 2005, 7:58pm, pattik wrote:| A little cranky, are we Jonny |
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Nope.....just dont like..."Take and run"
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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Samiam
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Re: Been away for awhile need help now
« Reply #5 on: May 25th, 2005, 8:07pm » |
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I'm sorry Jonny you feel that way but I have been ill and haven't been on the computer for a long time. Hubby just got me a new laptop and I'm trying to get use to it. Also in that time that I was trying to keep my life together I was trying to raise my kids as normal as possible dealing with being in and out of the hospital and not knowing if I was going to live or die....again I'm sorry you feel I wasn't pulling my weight supporting others.......Sami
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Samiam
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Re: Been away for awhile need help now
« Reply #6 on: May 25th, 2005, 8:11pm » |
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Thanks for the info on the O2. In the past that didn't work for me but I think I was on 6 with an non rebreathable mask. Maybe that wasn't the right setting. I may ask for stadol just in case to have on hand. I'm crossing my fingers that this is just a warning and won't come to play. I don't really think I could handle that on top of everything else that I have been going through....Blessings Sami
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Mr. Happy
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Re: Been away for awhile need help now
« Reply #7 on: May 25th, 2005, 10:58pm » |
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on May 25th, 2005, 8:11pm, Samiam wrote:| Thanks for the info on the O2. In the past that didn't work for me but I think I was on 6 with an non rebreathable mask. |
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Heh. Step into my Branch Office.
The whole shroom has taken off nicely over the past few years, but may not be the first choice for anybody with a cheesy ticker.
Take a few minutes and check out the latest thrill......Kudzu.
If everybody stuck around forever all the time, we'd never get a word in edgwise. That you knew where to go in time of need is testimonial enough. Pay no attention to the grumpy long haired nit from Boston.
He hasn't had a haircut since you were here last.
Head lice.
RJ
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E-Double
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Re: Been away for awhile need help now
« Reply #8 on: May 25th, 2005, 11:32pm » |
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1: Headache 2001 Sep;41( :813-6
Olanzapine as an Abortive Agent for Cluster Headache.
Rozen TD.
Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.
OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. The initial olanzapine dose was 5 mg, and the dose was increased to 10 mg if there was no pain relief. The dosage was decreased to 2.5 mg if the 5-mg dose was effective but caused adverse effects. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and two patients became headache-free after taking the drug. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. It alleviates pain quickly and has a consistent response across multiple treated attacks. It appears to work in both episodic and chronic cluster headache.
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I can't believe that I have to bang my
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But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Mr. Happy
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Re: Been away for awhile need help now
« Reply #9 on: May 25th, 2005, 11:53pm » |
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Bob-Dangit........yepper, E2, olanzapine is on the latest hit list....Bob J sure is a fan. And let's not forget Zomig Nasal, yet another innovative recent release. And what about Cheddon's Lithium Pulsing? Exciting times.
What else do you have?
RJ
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E-Double
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Re: Been away for awhile need help now
« Reply #10 on: May 25th, 2005, 11:56pm » |
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Don't forget about contacting the mothership or wearing your tinfoil hat!
Those are good options with no doubt solid empirical data!
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Mr. Happy
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If I can do it, it ain't art.
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Re: Been away for awhile need help now
« Reply #11 on: May 26th, 2005, 12:22am » |
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Everybody knows tinfoil hats are only 39.2% effective. Chees.
Here's another treatment from a sufferer:
tony battled for two weeks at a time with his attacks .... the last time (about 4 years ago) we gave up in despair and sought natural treatment ..... he was told as follows:
* peel an apple at nite when you go to bed
* first thing in the morning (before you even get out of bed) eat the
apple - it should be brown by now
* strong cup of coffee
* brisk walk
* and drink (and this is big helper) at least 2 litres of distilled
water everyday
he has not had another attack for 4 years, we advised anther sufferer to try
this remedy - after being in hospital for 2 weeks as well .... stopped his
attack after 1 day .... maybe worthwile mentioning
Then there was the Den and Georgia Vinegar and Blue Cheese chest rub treatment.....only thing came outta that was Georgia dropped Jonah 9 or 10 months later. Hell of a preventative.
SinusBusters deserves Honerable Mention.
Lest we forget Ali, the Syrian Mendicant......
RJ
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Samiam
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Re: Been away for awhile need help now
« Reply #12 on: May 26th, 2005, 8:09am » |
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Thanks guys you have all been great. I knew when I get into trouble I could count on you for the info that I needed. I will print this out and "if" these start again I will have some info to present to the neuro or my MD.
For years I have dealt with these every year even carring 2 babies going cold turkey (would not take a thing for these when preg) I often wonder if all the meds that I had taken over the years to try to control these are the reason I have the heart problems that I have now. I've never had high blood pressure low if anything and the cluster's (which you guys know is enough to take the bridge in its self). The three years that I've have had so far where not a complete repreve although I was without pain I wasn't without other medical problems that has taken a toll on my life. I have young children that need a Mom full time and a hubby that needs to have some kind of normal life at our age....Thank God I have him and the kids or I would have checked out a long time ago....
The Heart thing is scary enough to add the cluster's on top of that....well I freaking out. My security blanket which was the imitrex is not a option for me anymore. Stadol just numbed me but never really took the pain away and all the abortives that I tried never worked. The last go around I tried the new one out then, I think it begain with an "F" or and "R" with no results.
That Jefferson study I bet was done by Dr. Silverstein who I use to go to until he dropped me when I became prego and he didn't want the risk to take me through a healthy term. I also didn't like his bedside manner he had a real ego and his take on things was "I'm God you do what I say without questions".....Blessings Sami
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zebb37
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God damn the pain
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Re: Been away for awhile need help now
« Reply #13 on: May 26th, 2005, 10:28am » |
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brown apples?????????????
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