Author |
Topic: Good Night's Sleep and CH??? (Read 1986 times) |
|
Renee
CH.com Alumnus
New Board Hall of Famer
May we all find some pf time! Is it summer yet?
Gender: 
Posts: 1060
|
 |
Good Night's Sleep and CH???
« on: Dec 29th, 2003, 1:34pm » |
 Quote  Modify
|
I've read some of the posts on REM, sleep and CH.
I've been MUCH better since getting on o2, indocine and verapamil. I even made it thru the holidays with just some shadows that I was able to keep as just shadows with my meds and o2, but I have not been sleeping well. I've been waking up around 430 a.m. and tossing and turning the rest of the night then taking a nap in the afternoon due to lack of sleep and still no CH.
Well,,,last night I slept like a rock, never woke in the middle of the night, not even for a restroom break, and woke up feeling rested but with increased pain and 30 min. later I was visited by the demon and he has come back already twice again.
What i'm asking is...does a good night's sleep tend to bring the demon on?
also, the verapamil is causing dizziness and confusion at times for me. I already have a normal bp of 90/60 and am wondering if the verapamil is dropping my bp too low and that is what is causing the confusion, etc?
confused and visiting with the demon
renee
|
|
 IP Logged |
23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
|
|
|
Miklos
New Board Hall of Famer
Gender: 
Posts: 620
|
 |
Re: Good Night's Sleep and CH???e
« Reply #1 on: Dec 29th, 2003, 2:10pm » |
Quote Modify
|
Got caught once last month when I added a second BP medicine to my regimen. BP was way too low for me and left me dizzy and somewhat more confused than usual. I skipped a verapamil dose that evening and was back on schedule.
Go to a pharmacy and take your blood pressure if you don't have a cuff or portable at home. Or, stop by the doctor's office, and let them check.
|
|
IP Logged |
Don't be offended by my frank analysis. Think of it as personality dialysis.
|
|
|
Renee
CH.com Alumnus
New Board Hall of Famer
May we all find some pf time! Is it summer yet?
Gender:
Posts: 1060
|
|
Re: Good Night's Sleep and CH???
« Reply #2 on: Dec 29th, 2003, 2:12pm » |
Quote Modify
|
thanks miklos on the bp info.
have you had any correlation to sleeping good and then the demon appearing after a good night's sleep?
renee
|
|
IP Logged |
23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
|
|
|
Miklos
New Board Hall of Famer
Gender:
Posts: 620
|
|
Re: Good Night's Sleep and CH???
« Reply #3 on: Dec 29th, 2003, 2:25pm » |
Quote Modify
|
Sorry, not one of my patterns. Don't get to sleep too much when in cycle unless it's at my desk during the day.
|
|
IP Logged |
Don't be offended by my frank analysis. Think of it as personality dialysis.
|
|
|
Renee
CH.com Alumnus
New Board Hall of Famer
May we all find some pf time! Is it summer yet?
Gender:
Posts: 1060
|
|
Re: Good Night's Sleep and CH???
« Reply #4 on: Dec 29th, 2003, 6:04pm » |
Quote Modify
|
has this happened to anyone else to where they get a great night's sleep (much sounder sleep than normal) and wake up and immediately get hit with the demon?
|
|
IP Logged |
23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
|
|
|
athos
New Board Hall of Famer
Reality is for those who lack imagination!
  
Gender:
Posts: 770
|
|
Re: Good Night's Sleep and CH???
« Reply #5 on: Dec 29th, 2003, 6:28pm » |
Quote Modify
|
the lack of sleep is what kills me.... As well as too much sleep.
I have a hell-uv-a time getting to sleep. 1 am 2 am is very normal for me. getting 3 - 4 hours a night.
I am scheduled to go in for another sleep study... My apnea has returned... it has been almost a years since they fixed a deviated septumn and roto rootered my nostrils... It helped for a long time, but now it seems that my nose is backt o where it was. I have avery hard time breathing through my nose, which contributes to my apnea which O2 deprivation and more than likely a contibutor to my chronic CH.
So I have 2 problems... not getting to sleep and then not getting a good sleep.
|
|
IP Logged |
http://www.XdUP.com
Find Your Value For X
|
|
|
thomas
Guest
|
|
Re: Good Night's Sleep and CH???
« Reply #6 on: Dec 29th, 2003, 6:28pm » |
Quote Modify
 Remove
|
on Dec 29th, 2003, 6:04pm, Renee wrote:has this happened to anyone else to where they get a great night's sleep (much sounder sleep than normal) and wake up and immediately get hit with the demon?
|
|
Only after I first tried melatonin, then I tweaked the dosage and tried some med combos, then the cycle broke completely, mag and fluoxetine
|
|
IP Logged |
|
|
|
TxBasslady
CH.com Alumnus
New Board Hall of Famer
Bass fishin' is a h00t It's the catchin' that sux
Gender:
Posts: 3201
|
|
Re: Good Night's Sleep and CH???
« Reply #7 on: Dec 29th, 2003, 11:19pm » |
Quote Modify
|
Sounds like the ha after the deep sleep could be related to REM.
I am like athos.....sleep very little. In or out of cycle, about 4 or 5 hours is it for me.
You might try sleeping in a recliner or propped up on pillows on the sofa. This worked for me. Something about lying flat in the bed made me a wreck. I slept on the sofa for about 4 weeks. I think it kept the REM away.
Can't hurt to try it.
Hate to hear that the ha's are back....you were doing so good.
PF vibes,
Jean
|
|
IP Logged |
How lucky I am... to have known someone who was so hard to say goodbye too.
Take a kid fishin
www.takemefishin.org
I adopted a Vietnam POW/MIA from El Paso, Texas! 
|
|
|
ClusterChuck
CH.com Alumnus
New Board Hall of Famer
The BEAST rises again, and again, and again, and .
Gender:
Posts: 3181
|
|
Re: Good Night's Sleep and CH???
« Reply #8 on: Dec 29th, 2003, 11:33pm » |
Quote Modify
|
Quote:sleep ( P ) Pronunciation Key (slp)
n.
1. a. A natural periodic state of rest for the mind and body, in which the eyes usually close and consciousness is completely or partially lost, so that there is a decrease in bodily movement and responsiveness to external stimuli. During sleep the brain in humans and other mammals undergoes a characteristic cycle of brain-wave activity that includes intervals of dreaming.
b. A period of this form of rest.
c. A state of inactivity resembling or suggesting sleep; unconsciousness, dormancy, hibernation, or death. |
|
Sorry had to look up the word to find out what it meant. It is a word I am not familiar with. Heehee ...
In answer to your question, NO, never had that happen to me.
Chuck
EDIT: Damn I forgot the most important thing: Get that BP tested!!! Too low is very dangerous! Don't put it off.
Did ya do it yet? Get off yer ass and do it!!!! We luvs ya too much to let you let this slide by the wayside! DO IT!!!
|
| « Last Edit: Dec 29th, 2003, 11:36pm by ClusterChuck » |
IP Logged |
"No man can be happy without a friend, nor be sure of his friend till he is unhappy."
Thomas Fuller
|
|
|
Rick_K
New Board Old Timer
Gender:
Posts: 291
|
|
Re: Good Night's Sleep and CH???
« Reply #9 on: Dec 30th, 2003, 12:54pm » |
Quote Modify
|
When in cycle I never get a full nights sleep. The beast does not like me sleeping and must like late night crap TV.
Like Chuck said, get that blood pressure checked...
|
|
IP Logged |
episodic since 1969........damn
|
|
|
Renee
CH.com Alumnus
New Board Hall of Famer
May we all find some pf time! Is it summer yet?
Gender:
Posts: 1060
|
|
Re: Good Night's Sleep and CH???
« Reply #10 on: Dec 30th, 2003, 4:21pm » |
Quote Modify
|
thanks for the input and I love y'all too!
Got bp checked after not taking verapamil for 24 hours and it was normal for me 90/60. The ha finally quit hitting me yesterday evening.
I have now been off the verapamil for 48 hours and am having an extremely good day! This is first day in over 3 months where I have not even had a shadow!!!
yippee!!!
now, that leaves me with just indocine and o2 and trex inj as needed but i have an rx for topamax. Has anyone tried that? side effects? I'm stopping the verap for now.
renee
|
|
IP Logged |
23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
|
|
|
Big Dan
CH.com Alumnus
New Board Hall of Famer
SMASH BRAIN!
Gender:
Posts: 1513
|
|
Re: Good Night's Sleep and CH???
« Reply #11 on: Dec 30th, 2003, 4:24pm » |
Quote Modify
|
on Dec 29th, 2003, 1:34pm, Renee wrote:| Good Night's Sleep and CH??? |
|
That's kinda like using "Hydrogen Bomb" and "Beautiful Day in the Park" in the same sentence.....
-Big Dan
|
|
IP Logged |
Not going anywhere for a while?...
... Grab a Snickers, Fatass.
|
|
|
Renee
CH.com Alumnus
New Board Hall of Famer
May we all find some pf time! Is it summer yet?
Gender:
Posts: 1060
|
|
Re: Good Night's Sleep and CH???
« Reply #12 on: Dec 30th, 2003, 4:31pm » |
Quote Modify
|
but Big D,
It's been 3 months of little sleep and I finally got a good night's sleep, then WHAM BAM the CH appeared upon wake up instead of the middle of the night!
I thought I'd give anything for a good night's sleep, until it happened! lol
|
|
IP Logged |
23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
|
|
|
ClusterChuck
CH.com Alumnus
New Board Hall of Famer
The BEAST rises again, and again, and again, and .
Gender:
Posts: 3181
|
|
Re: Good Night's Sleep and CH???
« Reply #13 on: Dec 30th, 2003, 5:08pm » |
Quote Modify
|
on Dec 30th, 2003, 4:21pm, Renee wrote:| i have an rx for topamax. Has anyone tried that? side effects? |
|
Comoinly called dopeomax...The first time I was put on it, I was in the hospital. When I got to my house, I did not even know where my bedroom was! Didn't know how to get food out of a can. Did not know how to turn on my computer or how to go online. Powerful stuff!!!
But, I was on too high a dose, too soon. I am now on it, and don't have as bad a reaction. I started with 15mg, and increase every two weeks by 15mg.
Lots of people have had great success with it.
Good luck, and whenever you do something stupid, or can't remember something, you will now have a legitamate excuse .. Blame it on your drugs!!!
Keep us up to date on how it is working for you!
Chuck
|
|
IP Logged |
"No man can be happy without a friend, nor be sure of his friend till he is unhappy."
Thomas Fuller
|
|
|
Renee
CH.com Alumnus
New Board Hall of Famer
May we all find some pf time! Is it summer yet?
Gender:
Posts: 1060
|
|
Re: Good Night's Sleep and CH???
« Reply #14 on: Dec 30th, 2003, 5:19pm » |
Quote Modify
|
my rx call is for 25 mg tablets. take 1 each day for 1 week, then 50 mg per day for second week, then 75 mg per day for third week and on out.
what dose were you on when you couldn't find your bedroom?
|
| « Last Edit: Dec 30th, 2003, 5:20pm by Renee » |
IP Logged |
23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
|
|
|
BarbaraD
CH.com Alumnus
New Board Hall of Famer
Hugs to ya
Gender:
Posts: 5164
|
|
Re: Good Night's Sleep and CH???
« Reply #15 on: Dec 30th, 2003, 7:31pm » |
Quote Modify
|
I've been on topamax since 99 with very few side effects -- short term memory (but I'm OLD!). I did get suicidal on 400mg when I was really getting hit bad, but Nancy C caught it and told me to get back to a normal dose. My neuro agreed with her.
I've leveled out at 100mg per day most of the time and for the most part it's put me in remission until the last couple of months. Now I'm off and getting it out of my system until I see my neuro in a month or so. I may get back on it then. It just seemed to stop working all of a sudden after doing so well (my miracle drug) for several years.
They like to graduate the dosage up. My neuro started me on 75 and then a week later upped it to 150. since then I've regulated it depending on how often and how bad I was getting hit. But it worked almost instantly on me when I first started it and I was about the the point of Carl D's shotgun at that time.
Hope you get the meds straight and get some relief.
You've got work to do girl getting the next Texas meeting going.....
Hugs BD
|
|
IP Logged |
What don't kill ya, Makes ya stonger!
|
|
|
Cerberus
New Board Hall of Famer
Whomever said that two heads are better than one?
Gender:
Posts: 2117
|
|
Re: Good Night's Sleep and CH???
« Reply #16 on: Dec 30th, 2003, 7:56pm » |
Quote Modify
|
A Good nights what?...........ain't had one o them in a grip.
Ramon
|
|
IP Logged |
I would rather face the end with terror than terror without end. - (Deitrich Sawatsky 194?)
|
|
|
don
Guest
|
|
Re: Good Night's Sleep and CH???
« Reply #17 on: Dec 30th, 2003, 8:09pm » |
Quote Modify
Remove
|
I dont know if this helps you but Dr. Goadsby suggests that you begin to taper off the meds 14 days after what you HOPE is the final attack of a cycle.
I dont see if you stated what dosage of verap you have been taking?
|
|
IP Logged |
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss