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Topic: Ok, Now lets talk CH.COM...... (Read 1789 times) |
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jonny
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Ok,....Enough of the fun stuff....sex, war, religion 
What I want to know is where were you before you found CH.COM, by this I mean:
Were you diagnosed?
Did you have a Neuro?
Did you have meds?
Did you think you were alone in this pain?
You get where im going with this.................................................................... ..
Part two:
How has CH.COM helped you, by this I mean:
Got meds?
Got a Doc?
Again, you know where im going with this.................................................................... .
Part three: (Easy)
How did you find CH.COM?
And you lurkers out there....you could at least answer part three.
Thank you for your time
..........................jonny
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| « Last Edit: Dec 11th, 2003, 6:25pm by jonny » |
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BobG
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Re: Ok, Now lets talk CH.COM......
« Reply #1 on: Dec 11th, 2003, 6:28pm » |
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What I want to know is where were you before you found CH.COM, by this I mean:
Were you diagnosed? Yes
Did you have a Neuro? Yes
Did you have meds? yes
Did you think you were alone in this pain? Yes
Part two:
How has CH.COM helped you, by this I mean:
I have learned many things. I am not alone. I am not a freak of nature. I now know ALOT more about drugs, O2 and alternative treatments for clusters.
Got meds? Already had some.
Got a Doc? Already had one.
Part three: (Easy)
How did you find CH.COM? Surfin'
Thank you for your time.
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Paigelle
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Re: Ok, Now lets talk CH.COM......
« Reply #2 on: Dec 11th, 2003, 6:30pm » |
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Okay Jonny here we go!
I have had CH since I was 10 yr old. I am episodic. I wasn't officially diagnosed until I was 17-18 yrs old. Then I was told to take a Valium and deal with it.
I haven't ever had a neuro. Have been fairly fortunate in getting decent GP. However, I will be seeing a neuro in January.
For about 8 years no meds. I would try aspirin or whatever Mom gave me. After diagnosed I was given Valium and Midrin. Neither of which helped.
No, I never thought I was alone, my grandmother and mother both suffer.
Part 2
CH.com has helped me understand that more people are feeling the same way I am and that it is not just me that certain meds don't work on. It is the greatest outlet ever. You make great friends here and you have the greatest support ever for a "disease" that no one understands.
It has helped me with meds. I discovered the Prednisone trick here. People are always willing to express their opinions about the meds and how it will or won't help.
Seeing a neuro in Jan.
Part 3
Yahoo search for cluster headaches.
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Rick_K
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Re: Ok, Now lets talk CH.COM......
« Reply #3 on: Dec 11th, 2003, 6:37pm » |
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Were you diagnosed? Yes
Did you have a Neuro? Yes
Did you have meds? Yes
Did you think you were alone in this pain? Very much so
Part two:
How has CH.COM helped you, by this I mean: It is wonderful to have people to talk to who understand
Got meds? Already had meds and O2
Got a Doc? Had a doc, but just found a new one thanks to this site
Part three: (Easy)
How did you find CH.COM? From the OUCH site !!!
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episodic since 1969........damn
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jonny
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Re: Ok, Now lets talk CH.COM......
« Reply #4 on: Dec 11th, 2003, 6:37pm » |
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BobG,
I mirror your post.
.............................jonny
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thomas
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Re: Ok, Now lets talk CH.COM......
« Reply #5 on: Dec 11th, 2003, 6:38pm » |
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Yes. I was diagnosed. Yes I had a neuro. Yes I had meds. No, one of my best friends has ch (why he doesn't come around here baffels me). Ch.com kept me from killing myself. That's the biggest help it has given me. I've got to read other people's results with various treatments and meds. Thats the 3rd biggest help. I've got to talk to all of you that's the 2nd biggest help(sorry it couldn't be #1 - but living has to be first). I did a search on excite for "cluster headaches" and this is one site that came up that made me want to go on living.
Your welcome jonny I've always got time for you bro.
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Virginia
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Re: Ok, Now lets talk CH.COM......
« Reply #6 on: Dec 11th, 2003, 7:32pm » |
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Were you diagnosed? Yes
Did you have a Neuro? Yes
Did you have meds? Yes, but nothing that worked.
Did you think you were alone in this pain? Yes
You get where im going with this.................................................................... ..
Part two:
How has CH.COM helped you, by this I mean:
Got meds? Didn't know about the difference between a regular oxygen mask and & rebreather mask until I found this site. Didn't know about increasing dosages of Verapamil. Didn't know about water therapy or shrooms.
This site saved me by giving me hope. I thought I was at the end of the rope because I had tried "everything out there". But realized after reading the board that maybe I just hadn't found the right combo of meds for me. I discovered that I wasn't alone, that I wasn't losing my mind, and the best part was that I discovered the caring & support of complete strangers.
Got a Doc?
Again, you know where im going with this.................................................................... .
Part three: (Easy)
How did you find CH.COM? Typed "cluster headaches" in a search engine one day.
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Woobie
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Re: Ok, Now lets talk CH.COM......
« Reply #7 on: Dec 11th, 2003, 7:43pm » |
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ok - jonny..........
Were you diagnosed? yes, diagnosed, came home - did a search and VOILA! all within an hour
Did you have a Neuro? nope
Did you have meds? just the scripts the dr wrote me - weren't filled yet.. and one turned out to be a med that isn't for clusters, we found out
Did you think you were alone in this pain? absolutely
Part two:
How has CH.COM helped you, by this I mean:
Got meds? yes, and the correct ones... and some O2 - thanks to the supporters here on my first day here.......
Got a Doc? yep
Part three: (Easy)
How did you find CH.COM? GOOGLE
Thank you for your time
I guess I basically answered for Ramon - but I was here FIRST!!
While he was in pain - I read, and read, and read some more - posted, made phone calls, and tried to figure it all out. I was on this site for over a week before Ramon finally checked it out.
so how has CH.com helped us? Cannot count the ways.......
thomas said it right === getting to read the results of others with meds and surgerys... INVALUABLE!!!! The friendships made........ priceless........
and the fights.. ........ geesh - the drama around this place!!!! 
i think that's all for now...
tina 
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Little Deb
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Re: Ok, Now lets talk CH.COM......
« Reply #8 on: Dec 11th, 2003, 7:48pm » |
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What I want to know is where were you before you found CH.COM, by this I mean: Begging for mercy at the feet of the beast. Found it July 2002. Suffered CH for the last 25 years.
Were you diagnosed? yes, a few years ago
Did you have a Neuro? had just moved here, went into cycle and did not have a neuro here. (NC)
Did you have meds? not on hand
Did you think you were alone in this pain? Basically, yes.
You get where im going with this.................................................................... ..
Part two:
How has CH.COM helped you, by this I mean: Feel a sense of comfort knowing I am not alone and that someone else understands the pain.
Got meds? I have meds now, and have learned alot about what other people use, in case mine don't work.
Got a Doc? Just found an excellent neuro last week by accident.
Again, you know where im going with this.................................................................... .
Part three: (Easy)
How did you find CH.COM? went into cycle, and since I had recently learned how to surf the net with high speed internet, decided to look up cluster headaches and WOW! CH.COM!!
Now am happy to say I have met my first few clusterheads and can't wait to meet more. Also can't wait to go to the next convention!!!Love y'all!
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| « Last Edit: Dec 11th, 2003, 7:51pm by Little Deb » |
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Prense
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Re: Ok, Now lets talk CH.COM......
« Reply #9 on: Dec 11th, 2003, 7:53pm » |
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I was diagnosed in 2000...I found CH.com early this year...CH.com was the first in a list when I ran a search through Yahoo for "Cluster Headaches". Prior to finding CH.com, I was on a low dosage of verapamil and had maxalt for an abortive...neither was doing anything. I had not seen any neuros at that time and had never had any tests run. I did not feel "alone" with this prior to CH.com as I met someone with CH about 8 years ago, and I had a pretty good idea about what it was. With the assistance from everyone here, I was able to gain control over my medical issues. Shortly after visiting this site, I saw my first neuro...when I discovered he sucked, I pressed on to my current neuro. I have still not found any preventative that will put a dent in my attacks, but I was able to get O2 and imitrex injections prescribed. Those gave me a sense of control over my life again. I have been chronic since 1993, but the intensity and frequency soared starting in 2000...words cannot describe what DJ and what he has put together along with all the great folks here have done for me...
Excellent thread Jonny!
Chris
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Melissa
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Re: Ok, Now lets talk CH.COM......
« Reply #10 on: Dec 11th, 2003, 8:12pm » |
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Were you diagnosed? yep
Did you have a Neuro? nope
Did you have meds? nope
Did you think you were alone in this pain? yep
Part two:
How has CH.COM helped you: Made a lot of friends, who I now feel like are my family, who understand and empathize with my pain. Also introduced me to treatments which make my cycles a lot more sane.
Got meds? yep
Got a Doc? yep
Part three: (Easy)
How did you find CH.COM? surfing the net
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jonny
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Re: Ok, Now lets talk CH.COM......
« Reply #11 on: Dec 11th, 2003, 8:14pm » |
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This is what im looking for folks.....stray away from the questions all you want......im looking for what you felt before and after you found CH.COM.
Really great posts so far folks.
.........................................jonny
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Paigelle
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Re: Ok, Now lets talk CH.COM......
« Reply #12 on: Dec 11th, 2003, 8:40pm » |
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I have to add something here.
One of the greatest things about this site is that since we moved to NC, I have been alone and this site has kept me sane through my cycle.
It is horrible that we are all suffering through this, but if we weren't cursed with CH we would have never met each other.
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Kirk
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Re: Ok, Now lets talk CH.COM......
« Reply #13 on: Dec 11th, 2003, 8:41pm » |
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Allways with the fucking questions eh Moriarty.
1. I was at the VA an ENT was the one to figure it out. Only took 20 years
2. Neuro Immediately thereafter
3. No Meds that worked. Found about them here. Then got them.
4. Intellectully I knew there were other. Emotionally nope. That has changed since I arrived here. Unless you all are a manifestation of my seriously deranged mind. Its alright if you are, I can live with that. You don't have to tell me.
5. CH.COM has definetely helped me get the right meds. The rest I am under the delusion I had under control.
6. How did I find this place? Don't recall. Maybe Google. Possiblyy from the command line with $grep /*clusterheadaches. perhaps you're really just a file in /etc/share.
No matter either way I'm damn glad you're here. If you are really here so to speak that is..........
TTFN
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CHmess
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Re: Ok, Now lets talk CH.COM......
« Reply #14 on: Dec 11th, 2003, 8:53pm » |
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Well, this is how I felt before and after I found CH.com:
I was scared to death before I found this site! I definitely thought I was ALONE! I thought they would never end, that I was some kind of freak. Where did these things come from? Why now? What did I do to deserve this?
Went to the ER and was diagnosed...
Next day, got on "Google Search" and punched in Cluster Headaches - this was the first site on the list - Full of info and GREAT people! It blew my mind how many members this site had. So many people suffer yet no one (around me) has ever heard of them.
Thanks to this site I know that I am NOT ALONE! I am so happy that I stumbled on to this close-knit family that welcomes you with open arms and lets us "new comers" snoop around and learn all we can!
I'm not scared anymore. I think this web-site has been a life saver for all of us whether we know it or not! I fully understand why some would contemplate suicide (my Dr. knows of several who have followed through) another reason why I am very thankful for my 3 beautiful little daughters (my other life savers) - something to focus on to get me through this. I just pray they NEVER have to feel this pain!
Let ME take it for them!!!!!!
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jonny
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Re: Ok, Now lets talk CH.COM......
« Reply #15 on: Dec 11th, 2003, 9:00pm » |
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Thank you CHmess, that is what im looking for.
Stay strong!!!
..................................jonny
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5-string
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Re: Ok, Now lets talk CH.COM......
« Reply #16 on: Dec 11th, 2003, 9:20pm » |
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What I want to know is where were you before you found CH.COM, by this I mean:
Alone,no meds, nothing other than thinking it was some form of migraine
Were you diagnosed?...yes
Did you have a Neuro? ...no
Did you have meds? ..no
Did you think you were alone in this pain?...yes
You get where im going with this.................................................................... ..
Part two:
How has CH.COM helped you, by this I mean:
I know what the hell clusters are and they're treatable to some degree. Y'all showed me the door to the neuro. thank you.
Got meds? ...yes
Got a Doc? ...yes
Again, you know where im going with this.................................................................... .
Part three: (Easy)
How did you find CH.COM?
google search "cluster headaches"
found this sight, did ALOT of reading and saying to myself "Son of a Bitch! There's a whole world of people with this." the whole time.
thank you again.
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stevegeebe
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Re: Ok, Now lets talk CH.COM......
« Reply #17 on: Dec 11th, 2003, 9:45pm » |
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Were you diagnosed? Not until about four years into the fun.
Did you have a Neuro? Same as above. He was an ass hat. Now I got a good (woman) one.
Did you have meds? Yes. Cafergot and Amerge.
Alone? Yes.
Got Meds? If I had asked, I know I would have had ya'lls help.
Got Doc? No, but I have the knowledge to have us work together to find something that works.
I found this site about three years ago. I was scared to post because of Jonny. LOL
You folks make me laugh through the pain. You are some smart sum-bitches. That is what I like most.
Thank you DJ....you are truely the nuts.
Steve G
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Not4Hire
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Re: Ok, Now lets talk CH.COM......
« Reply #18 on: Dec 11th, 2003, 9:58pm » |
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part 1
eventually... after three cycles
did not, still don't
no
fuck, yes
part 2
got what i need... and a forum to pass on what i know
not that i can trust *now* ...but *did* have
part 3
websearch, on a mountain in south america
thank YOU for your time, bro...
(and i hope ya got ya laddah up to clean ya guttah...heh)
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Mantra: This will NOT kill me...This will not KILL me... This will not kill ME...
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Jimmy_B
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Re: Ok, Now lets talk CH.COM......
« Reply #19 on: Dec 11th, 2003, 10:20pm » |
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Diagnosed with Clusters back in 1986...So I guess that's before CH.COM. Had a Neurologist & Anesthesiologist. Was taking Inderal, & Ergotamine.
I definitely thought I was alone...deep down I knew someone else must get these...but you still feel like you're the only one.
CH.COM has definitely made me say Fuckeneh more....& also met some pretty strange, weird & wonderful people. Meds have changed to Verapamil & OXY IR & now all my visits are with my primary care Doc. Don't need to go to the neurologist unless I need to change meds.
I found CH.COM a while ago...Just put Cluster Headaches in Google & up it came...didn't post for awhile but then posted under Marshall B. then Hound Dogg & finally Jimmy B. Lurked for about a year, before this.
Peace,
Jim
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maggie_may
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Re: Ok, Now lets talk CH.COM......
« Reply #20 on: Dec 11th, 2003, 10:24pm » |
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What I want to know is where were you before you found CH.COM, by this I mean:
I had been getting attacks every fall or every other fall since I was at least 16 (that's 10 years)
Were you diagnosed? -- not yet
Did you have a Neuro? -- was on my way to see him for the first time a few days afterward
Did you have meds? -- just the occassional 5-6 tylenols/advils that never worked. my GP tried me on a bunch of narcs, muscle relaxers, and even maxalt (which didn't work)
Did you think you were alone in this pain? -- Most definitely.
Part two:
How has CH.COM helped you, by this I mean: -- I was so glad to find this place to have so many people to talk to who knew what I was going through and that were willing to help me though the rough spots. Talked to a few people on here about getting the Imitrex shots over the nasal spray and how to stretch it out, and what a lifesaver that was! Even talked to people about o2 and got me some.
Part three: (Easy)
How did you find CH.COM? -- I was searching everywhere for any info I could find on CH before I went to see my neuro. Found the site from google
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Strength does not come from physical capacity. It comes from an indomitable will. - Mahatma Gandhi
The human spirit is stronger than anything that happens to it. - C.C. Scott
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BlueMeanie
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Re: Ok, Now lets talk CH.COM......
« Reply #21 on: Dec 11th, 2003, 10:42pm » |
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Part 1
1. First Cluster started Sept. 1979.
2. I've only had 2 yrs. PF since.
3. Diagnosed by a lady Neuro from India in 1985.
4. Found a second Neuro in 1989 when I first tried O2.
5. Tried most all of the meds listed on this sight. Not any
of the prevents listed works on me.
6. Met 3 other Clusterheads in the past 24 yrs. 3
months.
7. 1 of the 3 Clusterheads I know called me in 1999 to
tell me about Imitrex. (Not a Doctor ?)
Part 2
1. This sight has help tremendously emotionally.
2. Truthfully, I was hoping to find some sort of cure or
meds to stop CH's.
3. Since coming to this site, I've tried Melatonin &
Amerge. As always they only worked a few days
before the Beast returned.
4. I don't see a Neuro anymore. My doc gives me the
same meds as my Neuro would have.
Part 3
1. Found the site searching the Web.
Part 4
1. Thanks to ALL of YOU Clusterheads for allowing me to
vent, rant & rage. I hurt all the time and never
sleep more than 3 hrs. at any given time.
2. Normally my cycle ends within 10 weeks and I get by
knowing it's almost over.
3. Today is the end of my 13th week. I'm very
depressed right now especially because I had a KIP
10 last night with no meds and I really hurt today.
4. I don't think I would be around right now if I would
not have found Clusterville.
Thanks for listening fellow Clusterheads !!!
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| « Last Edit: Dec 11th, 2003, 10:44pm by YOSIMITE » |
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totka
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Re: Ok, Now lets talk CH.COM......
« Reply #22 on: Dec 11th, 2003, 11:36pm » |
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Were you diagnosed? - Misdiagnosed for 14 years
Did you have a Neuro? - a lot of f_cking neuros
Did you have meds? useless tranquilizers, painkillers
Did you think you were alone in this pain? yes
How has CH.COM helped you, by this I mean:
... Imitrex tip, good words
How did you find CH.COM?
Gooogle search
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I have two enemies, cluster headache and English grammar.
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cootie
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Re: Ok, Now lets talk CH.COM......
« Reply #23 on: Dec 11th, 2003, 11:37pm » |
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Brad was diagnosed years ago (close to I'd say 18 or more)......after a year or so of not knowin WTF was goin on with no meds chronic
He went to a regular doc....after the 'usual round' of meds it was sudgested he mite have CH and to seek a neuro which he did.....
After the usual round of BS meds from the reg doc the neuro got him on imitrex and verapimil
Feel alone ? How bout crazy.......never heard of such a thing as this or knew anyone else that did or went thru it........it was like a deep dark secret what we went thru
CH.COM helped us find sum of the most COOLEST people with such a common BOND...........even tho we hang out with alot of friends and groups we NEVER met a group like this that instantly were pals without that usual awkward crap.....an expirience we won't soon forgit at the last convention in NY......who'd go that far to meet and hangout with a bunch of perfect strangers for so long anyhow.
meds are still imitrex and verapimil....he's gonna try O2 next time and hopefully get sum help here with how to use it properly
Our new doc is an internalist that has an interest and sum knowledge of CH and been great to work with and not have the wait to git in to see him or anything for help or meds............
Hey......thanks for 'YOUR' time not a lurker Pam
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ckelly181
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Re: Ok, Now lets talk CH.COM......
« Reply #24 on: Dec 11th, 2003, 11:58pm » |
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I got referred to a neuro in '86 after several years of GP and chiro visits. Diagnosed by a U of MN neuro, went on sansert. Found this place in the late 90s and found out more about c/hs, but didn't join in the fun.
This fall, I came back to find an alternative to sansert for a lousy GP (who poo-pooed anything found "off the shelf on the internet" and "discovered" oxygen...my godsend.
Done for about a month with this round and am staying around for some reason... 
Chris
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