Author |
Topic: new to the club with questions (Read 595 times) |
|
n4xft
New Board Newbie
Gender: 
Posts: 9
|
 |
new to the club with questions
« on: Nov 21st, 2005, 10:28pm » |
 Quote  Modify
|
 just about a month into my first experience with CH. been to my doctor a number of times, tried all her solutions, [she keeps trying to tell me migrain] none worked and some made the episodes worse. have ALL the indicators, taken the quizz here and other nuero sites. had CAT scan to rule out the really nasty other possibilities. nuerologist appointment next week but not looking for any miricales from there.
so far my routine is lots of water, hot strong coffee, pace and cuss. I orderded some kudzu extract that I saw suggested on this site and wondering what you guys use for dosage and times to take the stuff. it is solray extract 150 mg. also really wondering about the o2 setup, how do you go about getting rigged up for that? a couple of nights ago I was ready to go out and crack open my cutting torch and huff away, figured if I blew myself up at least I would have some relief!
time for bed now , and I sure do dread it, guess I will be back here in about an hour and a half , spitting and cussing and wondering why me.....
|
|
 IP Logged |
|
|
|
mcf69
New Board Old Timer
I am acutely aware of where my trigeminal nerve is
  
Gender:
Posts: 337
|
 |
Re: new to the club with questions
« Reply #1 on: Nov 21st, 2005, 10:49pm » |
Quote Modify
|
GP's can be quite unfamilliar with cluster headaches, the neuro is your best bet. Also, check for a headache clinic, quite a few larger hospitals have one, just make sure it is through a hospital or other reputable health care system. Check with Johnny and Mr Happy on O2 setups. Meanwhile, look around the board, read, and don't be afraud to ask questions. Oh yeah, BTW, print out some of the info from the links to the side of the page and bring them with you. Let us know how you make out, best of luck to you.
Edited to add: If you're getting hit at night, make sure to check out melatonin, it can usually be had in drug stores, comes most commonly in 3mg tabs, try one before bed, alot have had good luck with it.....
|
| « Last Edit: Nov 21st, 2005, 10:52pm by mcf69 » |
IP Logged |
|
|
|
nani
CH.com Alumnus
New Board Hall of Famer
Got kudzu?
Gender: 
Posts: 7953
|
|
Re: new to the club with questions
« Reply #2 on: Nov 22nd, 2005, 2:03am » |
Quote Modify
|
Most of us have had the most effectiveness when we "pulse" the doses. You can start with just a couple of tabs a day and add (only to the maximum number on the bottle) as needed. Take your biggest dose at least 2 hours before the time when you usually have the most CH activity. So...for example, if you're a 2 AM-er and a 9 AM-er...take your kudzu at bedtime and by 7AM. The Solaray are a pretty low dose, BTW. Most of us used either Natures Way (613 mg tabs) and Planetary Formulas (750 mg tabs) I took 6 - 750 mg tablets a day. So, you may be able to increase yours a little more than what it says on the bottle.
I hope that helped. pain free wishes, nani
|
|
IP Logged |
Others may come and go, but MY power is MINE.
|
|
|
n4xft
New Board Newbie
Gender:
Posts: 9
|
|
Re: new to the club with questions
« Reply #3 on: Nov 22nd, 2005, 2:22am » |
Quote Modify
|
thanks for the info nani, went with the soloray because I had seen it mentioned somewhere in one of the posts. now I have a better idea of what dosage may be useful. I am new to this game and just trying to find my way thru the night...more of a 1AM person here, it's 2:20 now and I think I will try to lay down again..hope I get to stay there. again, thanks so much for your reply
david
the area I live in is covered up in kudzu, it was brought in long ago to stabilize the railroad passages thru the mountains and now it is everywhere. maybe I could just go out and graze like a goat or something 
|
|
IP Logged |
|
|
|
Barry_T_Coles
CH.com Alumnus
New Board Hall of Famer
Gender:
Posts: 1348
|
|
Re: new to the club with questions
« Reply #4 on: Nov 22nd, 2005, 7:05am » |
Quote Modify
|
Good to see you are keepin a smile on your face, go graze to your hearts content.
Kind regards
Barry
|
|
IP Logged |
Worry is like a rocking chair it gives you something to do but gets you nowhere.
http://mushys.com/kiwi
[img]
|
|
|
BMoneeTheMoneeMan
CH.com Alumnus
New Board Hall of Famer
In remembrance of KingCazman. RIP
Posts: 2082
|
|
Re: new to the club with questions
« Reply #5 on: Nov 24th, 2005, 2:05am » |
Quote Modify
|
David, sorry you are having a tough time. I dont know anything about kudzu, but have you tried Oxygen?
If you print out some research and take it with you, you can probably get it from your GP or neuro. They can prescribe it, make SURE they prescribe it at 12 to 15 litres per minute. The doctor will have the oxygen delivered to your house with a regulator and a non rebreather mask. MAKE SURE TO GET THE NON REBREATHER MASK WITH A RESERVOIR BAG!
Oxygen is good for many people here in giving relief within minutes, and stopping a headache completely within 10 to 20 minutes. Its cheap too, in case your insurance company is cheap.
What other medications or treatments did you try that did not work for you?
Hope you get relief soon.
PF wishes
BMonee
oh, and PS, when they deliver it, make sure you get enough. 1 usage of oxygen will consume about 150 litres, sometimes even 300 litres consumed in 20 minutes. I would recommend you get 8 "doses" of O2 just to start and see if it works for you. Whatever size tank you get, make sure to get at least 2000 litres of oxygen to start......i have over 6000 sitting in my house........some people use tanks that hold over 6000 litres each.
Im just sayin, dont let them hand you 1 small tank of O2 and think thats gonna cut it.
|
|
IP Logged |
"Fool me once, shame on, shame on you. Fool - can't get fooled again"
Think of how stupid the average person is, and then realize half the population is stupider than that.
|
|
|
n4xft
New Board Newbie
Gender:
Posts: 9
|
|
Re: new to the club with questions
« Reply #6 on: Nov 25th, 2005, 8:00am » |
Quote Modify
|
BMonee ,
the treatment I am using right now is reading this board and trying to get a handle on what has happened to me...my GP is clueless [ sad saga of her attempts to treat it as a migrain or tension ache listed elsewhere on this site] and seems to resent the fact that I bring in info to her, she will not even look at my chart that I keep on times and intensity ect...I hit all the symptoms spot on, the quizz on this board and the opinion of a psyhc ward RN [suicide headaches] are all I have to go on for now...all I know is after 5 weeks I am very tired from geting limited amounts of sleep at night with sometimes 4 attacks that haul me up from sound sleep to a hell on earth. Thanks for the info on O2, I am actively persuing that direction now and have an appointment with a nuero coming up soon. Maybe the new doc will listen to me and try to help thanks, david
|
|
IP Logged |
|
|
|
E-Double
CH.com Alumnus
New Board Hall of Famer
Are we ourselves?
Gender:
Posts: 6458
|
|
Re: new to the club with questions
« Reply #7 on: Nov 25th, 2005, 8:40am » |
Quote Modify
|
on Nov 25th, 2005, 8:00am, n4xft wrote:.....my GP is clueless [ sad saga of her attempts to treat it as a migrain or tension ache listed elsewhere on this site] and seems to resent the fact that I bring in info to her, she will not even look at my chart that I keep on times and intensity .....ect...
have an appointment with a nuero coming up soon. Maybe the new doc will listen to me and try to help thanks, david |
|
Bring that info to your new doctor!
If this bitch will not look at your chart that presents significant data that will help her help you then she is not only worthless as a doctor but as a human!
Bullshit brother!!
Good luck
|
|
IP Logged |
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.
|
|
|
n4xft
New Board Newbie
Gender:
Posts: 9
|
|
Re: new to the club with questions
« Reply #8 on: Nov 25th, 2005, 10:17am » |
Quote Modify
|
E-Double, my wife has been saying the same thing to me....you try and respect a person who is a professional and when they are so self assured they are right that they don't even want to look at anything else it is a sad state of affairs...at any rate she is out of my loop now, just need to get a proper diagnosis and try to get on the O2 routine...going after kudzu from the local nut and twig store right now....got to get some sleep...every time I go to sleep within an hour, bang, the monkey is on my shoulder yelling in my ear "walk buddy walk, you are mine for the next hour or so"
|
|
IP Logged |
|
|
|
E-Double
CH.com Alumnus
New Board Hall of Famer
Are we ourselves?
Gender:
Posts: 6458
|
|
Re: new to the club with questions
« Reply #9 on: Nov 25th, 2005, 10:30am » |
Quote Modify
|
Write a post to ?Southerners asking about docs in your area.
Also check out the OUCH website which has recommended CH doctors.
For sleep, regardless of not being diagnosed yet you may try melatonin as long as you are not taking antidepresssnts (i think) if it helps you catch ZZZZ's then you may start avoiding the night hits (if that is what thye are)
Can you go to a local university hospital??
They might have some experience.
good luck!
Eric
|
|
IP Logged |
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.
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss