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docblondie
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fearing the night- not making it
« on: Aug 19th, 2005, 11:39pm » |
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Just wondering how many fear this-
I am on loads of meds- 80mgs Pred, 400mgs Topamax, 200mgs Verapamil (I have low BP), 40mgs Prozac, Imitrex as needed, .50mg ativan to sleep.
High doses of it all.
I get hit at night with clusters. I take the imitrex- have learned to split them in three doses.
With the combo of all these meds, I worry about the impact it has on my 37yr old body. I have been doing this for 17 years now. I am eposodic but the past 5 years, close to chronic. Few remission cycles.
So, when I take the imitrex at night- I feel my body react to it (tight chest, closing throat, sweating, heart pounding, twitching) and I genuinely fear I will not make it through the shot. I live alone and wonder how long before someone will find my body. Does anyone else have these thoughts? If so, how do you cope? 
Would love to hear from you!!!
~Christine
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Roxy
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Re: fearing the night- not making it
« Reply #1 on: Aug 19th, 2005, 11:55pm » |
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Hey Christine, I think at one point or another in our ch lives, we all have that feeling that the meds are going to kill us....so you aren't alone in that thought.
I'm chronic...very chronic. On a good day I'll have three or four ch's. On a bad day, it is pretty much every hour to hour and a half. I had a bad experience with meds, ended up in the hospital....it scared me enough to go med free. Amazingly enough, when I cut out all the meds, used only 02....the ch's got better. I'm still med free, but I do use triptans when I find myself out in public. At work, I keep a bottle of 02 handy.
You don't mention 02 in your post. It is a lifesaver and all I can say is RUN as fast as you can and get some.
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
Also do some reading here:
http://www.clusterbusters.com/
Roxy 
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docblondie
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Re: fearing the night- not making it
« Reply #2 on: Aug 20th, 2005, 12:00am » |
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THanks Roxy. I used to have a handle on the O2 but it broke...  When I use O2, the headaches come right back.- I do keep an H-tank handy for the times when the HA's are only 6 or 7's on the scale.
I will check out the links.
Can you work and have a normal life with chronic ha's that frequent?
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mcf69
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Re: fearing the night- not making it
« Reply #3 on: Aug 20th, 2005, 12:26am » |
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Hi Christine,
You aren't the only one with these thoughts and feelings. I've often thought the same thing and I'm not on half as many meds as you are. Like Roxy siad, the O2 is a godsend, it works so well for me along with the occasional dose of Imitrex I've been able to avoid all the preventatives. Are you using a non-rebreather mask?, that can make all the difference, if you need one, let me know, as I have quite a few. The biggest thing with oxygen is to keep it on after the headache has subsided, another 5-10 minutes or so, give it a try and see if it helps. You deffinately need something more portable and easier to manage than the H tank. See if you can get some E's, they are easier to have around and get filled without having 1 huge tank. If you ever need someone to talk to don't be afraid to give one of us a holler, someone is usually always around. Hang in there and best of luck.
Ben
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nani
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Re: fearing the night- not making it
« Reply #4 on: Aug 20th, 2005, 2:37am » |
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Hey Christine, the meds scared me, too. I can't even use Imitrex or any triptans now, I have heart issues. In a way, I'm glad... at least I know CH won't kill me. I always thought the trex might. 
Do look into clusterbusters, it's working pretty well for me right now. Kudzu also worked very well for me for a while. There are several threads to read on it. All the links to them are in the What's this kudzuuu about thread on the top of the medications board. Look into melatonin, too. It helps many with the nighttime hits. There are several threads about it on the meds board as well. Hang in there. Pain free wishes, nani
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BobG
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Re: fearing the night- not making it
« Reply #5 on: Aug 20th, 2005, 3:05am » |
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Prozac? Why?
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Kevin_M
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Re: fearing the night- not making it
« Reply #6 on: Aug 20th, 2005, 6:22am » |
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on Aug 19th, 2005, 11:39pm, docblondie wrote:| I am on loads of meds- 80mgs Pred, |
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This, should be only very, very temporary, and tapered to nothing in weeks, if you are referring to prednisone.
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docblondie
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Re: fearing the night- not making it
« Reply #7 on: Aug 20th, 2005, 1:02pm » |
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Kevin,
I take 80mgs of pred for 7 days, then 60mgs for 7 then 40 for 7 then 20 for 7 then 10 for 3 days then stop.
I wil usually have about a week of no ha's then I start the pred. all over again.
My cycles are 6 months headaches, 11 months no ha's.
The last 5 years the cycles have been sporadic. Longer cycles- few remission.
I have been on and off pred. since 1989. I am aware of the side effects and am tested every few years. So far, no problems. At this point (I'm 37) I am healthy and OK, and don't care about side effects- the headaches are worse. My neuro. is OK with that. I have tried al other meds. and am considering Kudzu but reluctant due to the problem of combining with triptans and verapamil. Imitrex is the abortive that has been 100% effective for me. Take away my pred. and imitrex, you might as well kill me.
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docblondie
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Re: fearing the night- not making it
« Reply #8 on: Aug 20th, 2005, 1:15pm » |
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Bob,
If you have not read about it, Serotonin plays a part in cluster headaches. A mysterious part, nonetheless. Prozac helps synthesize Serotonin.
Additionally, Cluster Headache Sufferers are prone to depression, especially chronic, which I have matriculated into from eposodic.
Prozac may be helping with both symptoms- serotonin depletion and depression.
Does that help?
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docblondie
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Re: fearing the night- not making it
« Reply #9 on: Aug 20th, 2005, 1:21pm » |
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on Aug 20th, 2005, 12:26am, mcf69 wrote:Hi Christine,
You aren't the only one with these thoughts and feelings. I've often thought the same thing and I'm not on half as many meds as you are. Like Roxy siad, the O2 is a godsend, it works so well for me along with the occasional dose of Imitrex I've been able to avoid all the preventatives. Are you using a non-rebreather mask?, that can make all the difference, if you need one, let me know, as I have quite a few. The biggest thing with oxygen is to keep it on after the headache has subsided, another 5-10 minutes or so, give it a try and see if it helps. You deffinately need something more portable and easier to manage than the H tank. See if you can get some E's, they are easier to have around and get filled without having 1 huge tank. If you ever need someone to talk to don't be afraid to give one of us a holler, someone is usually always around. Hang in there and best of luck.
Ben |
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Ben, THanks for the info- yes, I have used the O2 masks, and at a high flow for duration of the HA. I ahve had smaller tanks but for me they run out very quickly- When I use O2, the headaches return within 1/2 hour or so.
Unfortunately, prednisone has been the only preventive that works. I can spilt the imitrex into 3's so that is a plus.
THanks for the info.
Best of luck to you too-
Chris
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Redd
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Re: fearing the night- not making it
« Reply #10 on: Aug 20th, 2005, 1:42pm » |
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I'm a 40 y/o female, and just 6 months ago I would have said the same thing about the Verap and imitrex..take it away and you might as well kill me. But the two of them were also slowley killing me. I was, by definition chronic, and with my low BP to begin with, even 100 mg's a day was dropping me to dangerously low levels and I would nearly pass out at the sink mornings getting ready for work and have to call in sick.
Topomax only made me dumb as a box of rocks, wasn't on Prozac, but Lexapro there for a while and my mood was much worse on it than after I stopped it, and it did nothing for the CH anyway.
I had no real choice, I decided to go an altrnative route. Detoxing from the meds was difficult, but I had to do it. Maybe I was crazy, maybe you call me a glutton for punishment, but over 2 weeks I weaned off the Verapamil, and stayed off of imitrex for 7 days. I used up all my remaining sick days and personal days at work to do this and scheduled it to give me this time when the kids would be with their father so they didn't have to witness me going stark raving mad in pain.
Been off all conventional meds for almost 6 months now. It's not 100% and I'm still officialy chronic, but it's a whole hell of alot better than it was with the imitrex rebounds and being weak from the verapamil. My hits are harder then when on the verap, but shorter in duration over all.
to add: I cherish my PF time now and make the most out the few days, or even hours between rounds of hits. To fear and worry is to give in to the beast. I refuse to do that. I will fight with all I have untill I can fight no more. With this family here to support me (and you too) we will make it out of the darkness if we so choose.
Brighter days ahead, Christine.
Pegg
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| « Last Edit: Aug 20th, 2005, 1:47pm by Redd » |
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docblondie
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Re: fearing the night- not making it
« Reply #11 on: Aug 20th, 2005, 10:05pm » |
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Thanks Pegg!
I am thinking of gong off some meds- trying just pred.
I feel fogged by the topamax and I teach university classes so I need my mind! Also, I counsel so it is helpful to remember my clients.
Verapamil is making me weak also- my BP is usually 90/60. I can split the imitrex in threes so rebound is usually not too bad of a prob.
Good for you that you could get through-
Hope more PFDANs ahead for you!
Best of luck!
Chris
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kissmyglass
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Re: fearing the night- not making it
« Reply #12 on: Aug 20th, 2005, 10:55pm » |
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Look into Lithium...saved my chronic ass
Kev
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madaline
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Re: fearing the night- not making it
« Reply #13 on: Aug 21st, 2005, 5:47am » |
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Hi docblondie, I was on a lot of different meds also. I still take 600mg. Verapamil daily but was able to cut out many of the others when just about 7 weeks ago I accidentally discovered that the caffeine with the analgesic in Excedrin (or Tylenol and caffeinated soda) is a good abortive. Have you ever tried the caffeine and analgesic thing? Might be worth a try, as simplistic as it sounds. Good luck. Madaline
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Jonny
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Re: fearing the night- not making it
« Reply #14 on: Aug 21st, 2005, 5:59am » |
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on Aug 20th, 2005, 10:55pm, kissmyglass wrote:Look into Lithium...saved my chronic ass
Kev |
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Saved my chronic ass, also, for the last 15 years
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LadyElaine
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Re: fearing the night- not making it
« Reply #15 on: Aug 21st, 2005, 8:11am » |
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Same thing happen to me that happen to Roxey. I am med free and they seem to be better. I don't use triptains cause I can't. I now use O2 and ice.
I do know the fear of the night. I think the fear hurts us. Its just natural we fear it, we fear the next attack.
I will keep you in my prayers.
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burnt-toast
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Re: fearing the night- not making it
« Reply #16 on: Aug 21st, 2005, 9:18am » |
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I don't need meds to fear the night. CH has that one all wrapped up. There are a lot of meds. out there that help. Talk with your doctor, explain your experiences and symptoms and start discussing/reserching options that may be less difficult for you to handle.
Tom
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E-Double
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Re: fearing the night- not making it
« Reply #17 on: Aug 21st, 2005, 12:35pm » |
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on Aug 20th, 2005, 12:00am, docblondie wrote:
Can you work and have a normal life with chronic ha's that frequent? |
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YES!!!
Since you appear to have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful
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 8-10 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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