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back again (Read 980 times)
Tojokom
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back again
Feb 3rd, 2011 at 6:20pm
 
nov or oct of 2008 , last time i was here. would like to thank all that helped me get swet up with non rebreather mask and point me in right direction on how to handle ch.  since 2008 only had a couple MILD run in with ch. prob kip 3 or 4 at most.

come jan 2011 find out i had heart problem, had a 90% clogged vien in my heart which eneded up getting heart cath surgery and a stint.

3 days ago ch comes back full force, not sure if the meds doc put me on are triggers or not, or if Mr CH just decided he has not visited me in a long while and thought he would pop in and remind me that he still around.

been at kip 5+ for 20+ hours with 6 full blown 9 and 10 bouts in last 20 hours.
have only gotten like 90 mins sleep total in 15 to 30 min cat naps with headache waking me each time.

ran out of o2 at 6am this morn and had wait till 9am when supply company opened up to get 2 more m tanks. as you can only imagaine those was the longest 3 hours of the day

see ya'll have new o2 mask set up in ch.com store got old non rebreather set up had ordered from susan at SEALONG in tx. the new o2 set up the same or better tehn one from sealong ?

well to those that remember me from 2008 heyas and hope ya been doing fine. pardon me for not being around more when my ch was less aggressive and letting me get on with my life


tojokom
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doing it magemonk style 12+ years
 
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Guiseppi
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Re: back again
Reply #1 - Feb 3rd, 2011 at 6:37pm
 
Do you have anything else you are using besides oxygen? A great abortive but at the level you're getting hit I'd talk to the doctor about a 10-14 day prednisone taper to give you some immediate relief, let you catch your breath and maybe get  alittle sleep.

While you're on the taper, see if he will start you on a prevent, Verapamil is the typical first round prevent, I use Lithium, others have had success with Topomax. The idea is to reduce the number and intensity of your attacks.

For the night time attacks, look into melatonin. An over the counter sleep aid, start with 9 mg about 30 minutes before bed time. You may have to adjust the dose up or down, it saves many from the night time terrors. Some use a combo of slow release and standard release melatonin to get them thru the night.

Sorry the beast came back to bite you, he's kind of a pain in the butt that way. Cry

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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Tojokom
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Re: back again
Reply #2 - Feb 3rd, 2011 at 6:56pm
 
nope no meds for CH just oxygen have tried couple other tricks like strong black coffee / red bull etc items listed in variouis posts here.
have only see 1 doc and he was the emerg room doc at a hosp in a small town in illionois when i was driving 18 wheelers in 2003 he gave me 1st hit of oxygen and told me what i had. i called home and had my GP doc write me a script for oxygen. and for most parts has worked as a abortive fine since 2003.

but these last 3 days and the last 20+ hours is prob going see me driving to the VA hosptial and seeing what they  recommend.

just not all into the " drugs" abortive route like i said oxygen has seemed to woprk fine up until like yesterday. not sure if the plavix and lipator i been taking since jan 7th is playing a factor in my normal abortive with oxygen.

heh and i reckon time for a new mask setup also looking at this one 4 years old and starting to show some age like me

thanks for th reply "g " you was one the 1st ones to steer me in right direction in 08 ... much apperciated


tojokom
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« Last Edit: Feb 3rd, 2011 at 6:58pm by Tojokom »  

doing it magemonk style 12+ years
 
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Tojokom
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Re: back again
Reply #3 - Feb 4th, 2011 at 10:06am
 
36 hours from start to k3 and k4 wake up calls every 90 mins to 2 hours this morn it on a down slide i hope..

will go get some meletoian today gus and start that of tonight and hope for the best.

thanks again ya'll for being here and sharing all the idead trials and errors we find along this road. here's hoping to the road crew filling in the potholes so we all have pf rides ahead..


tojokom
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doing it magemonk style 12+ years
 
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bejeeber
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Re: back again
Reply #4 - Feb 4th, 2011 at 12:54pm
 
The melatonin sounds like a good idea to me too. Glad to see that Guisseppi continues to advise you well over the years.  Smiley

About seeing what the VA hospital recommends......WATCH OUT!!! There's a serious chance they won't know jack, and will only recommend wrong, potentially harmful crap, because when it comes to CH,  doctors (except for headache specialists) are typically ignorant boneheads. To put it politely. Shocked

So the moral of this story IMO is to not trust anyone (including rank and file neurologists) except a headache specialist. Unless they have a specialist there at the VA, Guisseppi and many others on here may be more informed about meds for CH than anyone at the VA will be (!).

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« Last Edit: Feb 4th, 2011 at 3:47pm by bejeeber »  

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.
bejeeber bejeeber Enter your address line 1 here  
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Tojokom
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Re: back again
Reply #5 - Feb 4th, 2011 at 9:17pm
 
once again Joe and Batch have helped alot

thanks for the info in the PM batch went and got those and took them about 130pm now 815 pm and just a mild shadow more like aftereffets froma  40 hour bout with the beast.

will let ya know tomorow how the night goes be nice get some sleep instead o a 30 min cat nap


tojokom
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doing it magemonk style 12+ years
 
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Guiseppi
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Re: back again
Reply #6 - Feb 5th, 2011 at 9:37am
 
Keeping fingers and toes crossed for ya! Smiley

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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