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Topic: What the heck? Sleep (lack there of) (Read 296 times) |
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De_Minimis
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What the heck? Sleep (lack there of)
« on: Apr 10th, 2005, 12:06pm » |
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What, am I back in college? Did not sleep a wink, not a nod, last night. Haven't done that since trying to write papers at the last minute or due to all night frat parties. Man oh man is my clock screwed up. I've got so many different orange script bottles around the house that I think I'm a walking DEA incident. That's it. I'm reducing some of these things. Verapamil, you did nothing for me but give me shakes. Bye bye. Kudzu, had to order you over the Net and all you did was provide me the opprotunity to fart on command. Well, maybe I'll keep that one for dinner parties and bosses' offices. Meletonin, you've been something of a blessing, but even with 9mgs, my eyes were slammed wide open all night. Depekote? I don't know if you're helping or not. Don't think you're messing me up, so I'll keep you around in case my neuro is right about you. Then, our good friend Mr. Pred. I love you, I hate you. Pred, you help prevent my CHs as repeatedly tested by slowly backing off and having proportionate increases in CH episodes. My complexion is worse than in high school because of you and you are being blamed for these ten new pounds I find aroung my gut (although you do make a convinent pasty for that whether that's fair or not). I'm just gibber-jabbering now. I'll chaulk it up to a lack of sleep. On the upside, no sleep equals no CH for me last night. Now, where did I park that heavy machinery??
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De Minimis
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E-Double
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Re: What the heck? Sleep (lack there of)
« Reply #1 on: Apr 10th, 2005, 12:27pm » |
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What dosage of verap. are you at?
When are you taking the melatonin?
HOT steamy shower before attempting bed? could help ...then pop the melatonin.
TRY HARDEST to go to bed @ same time and get up same time (of course assuming you get night hits under control)
The taper of the pred. could bring back an increase in hits IF you have not reached a therapeutic level on prevent.
DO NOT just stop verapamil abrubtly...bad for your heart!!
Hang in there!!!!
E
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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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Tara Ann
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Re: What the heck? Sleep (lack there of)
« Reply #2 on: Apr 10th, 2005, 12:31pm » |
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Most of us understand your feelings. I was too so tired of those little orange bottles and the doctors. And consequently swore off meds. For awhile I was doing well, after trying LSA in the form of morning glory seeds (and getting sick as a dog for over 24 hrs afterwards) but in a way I think it was worth it. I dosed twice and had about a week break, then weeks of very much reduced CH's. I'm started to go back to the old CH schedule here lately though. BUt the illness I experienced on MG seeds, I don't think I will go that route again. I'm considering Hawaiin Baby Woodrose seeds now, they have a higher concentration of LSA and from what I've read the naseau is less pronounced.
Also, I'm still not sure if my break can be credited to the LSA or not. Or if it was coincidence.
Have you considered Shrooms? I'm nearing that option now.
Hugs and vibes to you. I hope you get some sleep soon! What a precious thing sleep is.
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De_Minimis
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Re: What the heck? Sleep (lack there of)
« Reply #3 on: Apr 10th, 2005, 2:39pm » |
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Dr. did not agree with members' dosage recs on Verapamil. She started me on 120mg long acting and is willing to double that to 240. However, with even the 120mg, the jitters really bug me. At 240, I'd probably look like a bobble head. Enough of that.
But for this freakish lack of any sleep last night (building on weeks of very little sleep), I feel I've rounded the corner. Historically, my clusters do not go any longer than eight weeks, but what an eight weeks it usually is (days, nights, 8-10 or more debilitating CHs in a single day). However, this year, the series is running about one month late (start). I only get these in late Winter, until this year (Spring) and usually only about every three years. Also, they are almost exclusively at night (every 90 minutes of sleep) this time. Shawdows only during the days with only a few exceptions this go-round. I'm past the four-week mark, so feeling better. I know the pred has a lot to do with the relief. Gonna try and take a nap now (even though nap experiences have produced some doozies for me before). 'Night. Thanks.
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sandie99
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Re: What the heck? Sleep (lack there of)
« Reply #4 on: Apr 11th, 2005, 1:17pm » |
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I'm so sorry... 
I hope that something would work for ya... 
I'm just on verapamil, 600mg, which works for me (for now). But I can understand how you feel, though. I have tried so many meds!
By the way, my pal, ex-insomniac, found cure in a simple way: she eats a banana before going to sleep! 
Best wishes & PF days and nights,
Sandie
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
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Gator
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Re: What the heck? Sleep (lack there of)
« Reply #5 on: Apr 12th, 2005, 6:37pm » |
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on Apr 10th, 2005, 2:39pm, De_Minimis wrote:Dr. did not agree with members' dosage recs on Verapamil. She started me on 120mg long acting and is willing to double that to 240. However, with even the 120mg, the jitters really bug me. At 240, I'd probably look like a bobble head. Enough of that.
But for this freakish lack of any sleep last night (building on weeks of very little sleep), I feel I've rounded the corner. Historically, my clusters do not go any longer than eight weeks, but what an eight weeks it usually is (days, nights, 8-10 or more debilitating CHs in a single day). However, this year, the series is running about one month late (start). I only get these in late Winter, until this year (Spring) and usually only about every three years. Also, they are almost exclusively at night (every 90 minutes of sleep) this time. Shawdows only during the days with only a few exceptions this go-round. I'm past the four-week mark, so feeling better. I know the pred has a lot to do with the relief. Gonna try and take a nap now (even though nap experiences have produced some doozies for me before). 'Night. Thanks. |
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Sleep? Sleep. What is this sleep? LOL Lack of sleep can definitely contribute to a really shitty day. It can make any daytime hits just that much harder to handle.
I understand you wanting to ditch the verapamil if the side effects are bothersome. Last thing you need on top of the ch is the shakes. Also, pardon me for saying so, but doctor is a moron. The higher verapamil dose is not a "member suggestion," but a pioneer in ch research and treatment suggestion. Verapamil has been given in doses up to almost 1000 mg as long as it is handled well by the patient. 120mg doesn't even really reach therapeutic levels for CH. Also, from my readings, the standard release taken several times a day delivers much more consistent results that the extended release form.
Ah well, hopefully this won't be an issue for you much longer and your 3 year remission turns permanent.
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yikes-another-one
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Re: What the heck? Sleep (lack there of)
« Reply #6 on: Apr 12th, 2005, 6:48pm » |
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I know it seems like all you are doing is pushing one pill after another....
but if you are pred....
you cannot trust your feelings.
So many people experience such negative moods and
manic episodes....
not only your body temperature rising....
Taper off the prednisone,
get a clear head....
then start a new trial....
I can't remember if you tried oxygen or not.
If you are sick of meds, that may be an option for you.
Either way, I just hope you get
some pain free sleep ASAP.
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De_Minimis
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Re: What the heck? Sleep (lack there of)
« Reply #7 on: Apr 12th, 2005, 6:52pm » |
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Here I was saying I rounded the corner. Well, I rounded that corner last night and ran straight into a brick wall. Even the 02 didn't fully abort one of the worse ones.
Man, I hope I can get through this jury trial tomorrow without an episode. I hate this defense attorney with the whole of my being, so if I have to forfeit due to a CH during trial, it will be more painful than the CH. Of course, I don't treat the defendant any different jsut because of his poor choice (IMHO) of a defense attorney as that wouldn't be fair. But to run away (in pain).....aaagh.
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De Minimis
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Jonny
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Re: What the heck? Sleep (lack there of)
« Reply #8 on: Apr 12th, 2005, 6:57pm » |
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on Apr 10th, 2005, 12:06pm, De_Minimis wrote:| Verapamil, you did nothing for me but give me shakes. Bye bye. |
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The list of side effects for Verap do not mention tremors, are you sure your talking about the right med?
At 120 mgs aday of Verap you should see no side effects at all being such a small dose.
Your Doc is a fucking idiot and knows nothing about CH if he wont up the Verap.
How do I know?......half a dozen Neuros and taking Verap everyday for the last 14 years.
Mix some Lithium with that Verap 
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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.
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Gator
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Re: What the heck? Sleep (lack there of)
« Reply #9 on: Apr 12th, 2005, 8:42pm » |
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on Apr 12th, 2005, 6:57pm, Jonny wrote:| The list of side effects for Verap do not mention tremors, are you sure your talking about the right med? |
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Now that you mention it, I seem to remember tremors being a side effect of Depakote. After looking it up, seems that you may want to discuss dropping the Depakote and keeping the Verapamil at an increased dosage with a new doctor.
http://www.drugdigest.org/DD/DVH/Uses/0,3915,1018|Depakote,00.html
What side effects may I notice from taking divalproex sodium? (Back to top)
Side effects that you should report to your prescriber or health care professional as soon as possible:
•agitation, restlessness, irritability, or other changes in mood
•blurred or double vision or uncontrollable eye movements
•changes in the frequency or severity of seizures
•double vision, or involuntary eye movements
•redness, blistering, peeling or loosening of the skin, including inside the mouth
•skin rash or itching
•stomach pain or cramps
•trembling of hands or arms
•unusual bleeding or bruising or pinpoint red spots on the skin
•unusual swelling of the arms or legs
•unusual tiredness or weakness
•yellowing of skin or eyes
Side effects that usually do not require medical attention (report to your prescriber or health care professional if they continue or are bothersome):
•breast enlargement, unusual production of breast milk
•changes in menstrual periods
•clumsiness or unsteadiness
•diarrhea or constipation
•difficulty speaking
•dizziness or drowsiness
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•increased sensitivity to sun or ultraviolet light
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•loss of bladder control
•loss of hair or unusual growth of hair
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•nausea or vomiting
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don
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Re: What the heck? Sleep (lack there of)
« Reply #10 on: Apr 13th, 2005, 6:55am » |
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Quote:| Mix some Lithium with that Verap |
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straight up, shaken not stirred.
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De_Minimis
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I Eat Glue!
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Re: What the heck? Sleep (lack there of)
« Reply #11 on: Apr 18th, 2005, 12:29am » |
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Thanks all. Damn Gator, those Depakote side effects are dead-on (a number of them anyway - I haven't noticed any change in menstrual cycles). I'm getting a new nuero this week (mine just doesn't listen). The HR director at the college I work at (part-time in evenings because I don't already have enough to do), is a fellow ("fella" = female?) sufferer. She's hooking me up with her nuero. That easily injured skin as a side effect sure calmed me down. I was like, "What the f*** is that!?!? and "How the f*** did that happen!?!? I won't even mention the part of the body I'm referring to, but damn. I figured it was one of these freak'n drugs I'd been taking.
Get this: Was out of town for a training for three days/two evenings. Altitude is not all that different (I think about 1,000 at most). Weather about the same, but wetter. Completely PF the whole trip. Got home last evening. Three episodes last night. There is no rhyme nor reason to these things.
Still not smoking! Coming up on a week!
Thanks again.
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| « Last Edit: Apr 18th, 2005, 12:32am by De_Minimis » |
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