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godsjoy777
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Rebound Clusters
« on: Feb 5th, 2005, 12:44pm » |
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I am starting the 5th month of clusters.....They used to only last 3 months....but....last cycle was 5 months and this cycle seems to be worse than ever......Verap was not so good to me......so I am on Zonegran ......was ok for the first couple of months ......then....OH MY Gosh!!!!!! I has a 2 week reprieve.....yippee!!!!!! Then........Wow....I got hit like gang busters.....I used to only get the clusters at night and only a at the end of cycle during the day once or twice.....NOW.....I am having break throughs right and left....Thank God for the O2....I feel like I need to strap it on my back ....I take it to work and when I feel one comming....I go to the break room and suck O2....a couple times a day....and I take my Maxalt when it doesn't seem to look like it will stay away....Then at night it is up several times a night.....so.....Overall I am getting hit like 6 or 7 times in a 24 hour period and I can't be taking the triptons so much.....I'm getting tightness around the chest and the Dr has ordered a stress test and EKG to see shat is happening htere before he orders any other meds....AND he wants me off the maxalt until we find out about my heart....I told him...."AIN'T NO WAY".....He said that I probably don't have a heart problem....but he can't legally tell me its ok to take them until we find out about it.....The O2 only prolongs the inevitable......I am wondering if what I am getting now is a rebound effect from Maxalt.......I thought rebounds were only from over the counter meds....BUT.....what do you all have to say......I am sucking as much O2 and "trying" to stay away from the Maxalt like my Dr says....BUT I have it at least 2 times in a 24 hour period....once to get through the day and once to get through the night....although now I am waking up several times per night with breakthroughs anyway...THANK GOD FOR THE OXYGEN!!!!!!!!
Any and all comments are welcome....You can imagine I am worn out...after 4 months and now it is harder and stronger than ever before....and stress wise....my daughter is getting married March 5th.....trying to keep functioning through all this in ONLY the grace of GOD....but HE is awesomely here......All prayers are welcome....we also had our 2nd grandbaby born 2 weeks ago....I want to function!!!!!!!!!!!
Love you guys!
Karen
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E-Double
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Re: Rebound Clusters
« Reply #1 on: Feb 5th, 2005, 1:24pm » |
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Karen,
Since you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be a savior.
Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep.
With the exception of 5-6 times.....I have slept through the night since August.....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time.
Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not...
The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern.
I stayed with melatonin and have had decent sleep overall.
It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression.....
Like I said we are all different.
Best wishes, good luck & stay as positive as you can!!!!
Eric
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godsjoy777
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Re: Rebound Clusters
« Reply #2 on: Feb 5th, 2005, 8:28pm » |
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Thanks Eric....Have used Meletonin....but not lately...I don't know what to say has really helped or not...It all seems ro depend on the time in my cycle....There is a time in my cycle when nothing seems to really work....and then.........aaahhhhh......another 10 months of pain free....Praying for that time again......
What I started out asking was......Do the Triptans....Maxalt....etc.....cause "rebounds"? I think I saw that in one of the articles somewhere on here....If so......I would like to "try" to break any rebound I might be in....unless what I am in is just a BAD BAD cluster cycle.......hmmmm........
I have been popping Maxalt like 3 or so a day....maybe even more....not sure......I used to try to only have one to 2 in a 24 hour period.....the tightening of the chest etc......My Neuro says that even Meletonin and Verap. can cause heart problems if he had me start them and try to ramp them up......just waiting for my Monday stress test and EKG.....I did get my blood work back and my cholestral was too high so I am back on Zocor starting last night....Maybe that will help....
aha....a new question.... 
Love you guys and need you here,
Karen
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nani
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Re: Rebound Clusters
« Reply #3 on: Feb 5th, 2005, 8:37pm » |
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Hi Karen...have you considered stopping the triptans altogether for a few days? My guess would be that if you can do that then you could see whether your HA frequency and intensity ease up.
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godsjoy777
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Re: Rebound Clusters
« Reply #4 on: Feb 6th, 2005, 10:24am » |
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OUCH!!!!!! I have "considered" and even tried to go as long as possible without triptan help.....but the only thing I have that works at all in O2....which only last an hour long during the night....so that makes me keep getting up every hour sucking O2......and then I try to take some Excedrine if I don't want to take a tripton.....BUT....when push comes to shove....I gotta have the maxalt to keep it at bay for any length of time to live in the real world.....I still drag around the O2 tank for the break through clusters.....Hopeing for the EKG-stress test results so my Neuro can prescribe something for me....even Verap effects the heart he said....
Anyway....He said he may have to put me in the hospital for a DHE drip....Hope not....too much going on....
You know how it is.....You just GOTTA GET RELEIF!!!!!
Praying for real breakthrough,
Karen
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