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        New Message Board Archives >> 2004 Cluster Headache Specific Posts >> Holy Moly WWW worked for ME!!!!!
        
(Message started by: Genoman on Sep 5^th, 2004, 6:51pm)

Title: Holy Moly WWW worked for ME!!!!!
Post by Genoman on Sep 5^th, 2004, 6:51pm

Hi, this is my first post. My wonderful wife ,who has been extrememly understanding, found this site a few days ago. I could not believe what she was telling me. There were actually others out there. My heart bleeds for some of you who obiviously suffer worse than I do. I pray for you guys more than I pray to god when I'm in the middle of an episode.
I have learned much. I will be making an appointment with a doctor at Tulane Univ. Hosp. first thing Monday morning, if they are open Labor Day, to seek further treatment BUT because of this website I think I found something that help me stave of an episode (I hope I'm using the right Lingo but I'm sure you get the point). Water Water Water!!! What a miracle. I felt it coming on. I went and filled a hot bath and grabbed 2-32oz Kentwood waters from the fridge. Before I was able to finish the first (about 15 mins.) I started feeling that beatuful subsiding. Thank you Lord for helping me find this info!
Gene,

Title: Re: Holy Moly WWW worked for ME!!!!!
Post by Kris_in_SJ on Sep 5^th, 2004, 8:05pm

Sorry you've been suffering Geno.

You're here on a quiet weekend, it seems. Did you take the Cluster quiz on the left? What are your HA's like in terms of duration and intensity?

I doubt you'll reach anyone tomorrow, but when you do, be sure to make your appointment with someone who specializes in headaches. Start a HA diary and keep track of times, durations, intensity, what helps and what doesn't, etc. Take it with you for your appointment..

I find that staying well hydrated during a cycle is imperative, but have never found water alone (in any amount) helpful in aborting a CH. (That's just me, and everyone is different - obviously, since it has its own link))

Keep us informed - Wishing you PFDAN!

Kris

Title: Re: Holy Moly WWW worked for ME!!!!!
Post by Jonny on Sep 5^th, 2004, 9:33pm

Damn....I thought I was going to read (World wide web) worked form me.

Theres some great porn out there......LMAO ;;D

The water trick does work for some....glad it helped you!

Welcome.

..............................jonny

Title: Re: Holy Moly WWW worked for ME!!!!!
Post by Genoman on Sep 5^th, 2004, 10:34pm

Hey Kris and Jonny, thanks for the follow-up. Kris, to answer your questions I did take the quiz and found that I fit right in there with the classic symtoms of CHs. There were a few that did not match such as my headaches usually take a bit longer than just 15 mins to cresendo. Usually more like 30 to 45 mins and they haven't woke me up because it seems like my routine is 5:30- 6:30 PM. I usually don't go to bed till 10:00 or so. They last about 2 to 3 hours from first symtoms until I feel completely out of the woods.
Let me give you a little back ground on my experience so far. About 4 years ago I was living in an apartment with my wife. I started getting the CH signs but had no idea what it was. We didn't do any research and I was scared to go to the doctor right away because.... well, I'm not sure. I guess I was scared of what they would find. After about a month, on a Sunday I begged my wife to bring to the ER. I couldn't stand it anymore. They did the CT and sinus X-ray and probably some other stuff but didn't find anything. The Dr. asked if I was experiencing any other uncomfort and I told him I had a bad tooth ache. He told me to get it looked at. That next week I went to the dentist and they did a root canal. What do you know. My headaches ceased. Wait. Don't write me off yet. I know what you're thinking. I think it was a (now looking back on it)coincedence that my cycle ended that day. Well about 2 months later they started back. I also had the same tooth on the opposite side of my mouth hurting. I had that one canalled and same result. The CHs just stopped!

Please bear with me. within 2 weeks ago one of those root canals started going bad so I had to have to tooth pulled. Within 3 days after having the tooth pulled my CH started back. A full 4 years later. My wife freaked because she witnessed the same monster from 4 years before ravaging me again. She began her research and now I'm hear. Please don't start bashing me. I have read other post where people think they figured out what their CH maybe linked to and they got F'en slammed! I don't claim teeth problems are the root of Chs but more than likely coinsidences. Excuse my spelling. I'm phonetically challeneged. hehe.

Also I have seen the KIP scale. I say most of my episodes are between 4s and 6s but I have experienced 10s I'm sure. Like 4 years ago when I cried like a baby for my wife to bring me to the ER.
Oh and Jonny, there is some great porn out there. haha!

Title: Re: Holy Moly WWW worked for ME!!!!!
Post by Jonny on Sep 5^th, 2004, 11:00pm

Bashed for teef?.....LMMFAO ;;D

How do mine look?

http://im1.shutterfly.com/procserv/47b3d701b3127cce8eebf9ce199c0000001610

Sorry but it didnt make a difference with this 30 yr chronic sufferer.....But I look damn pretty.....LMAO ;;D

Sorry your here but im glad you found us, you will not find more info on CH anywhere in the world!!

................................jonny

Title: Re: Holy Moly WWW worked for ME!!!!!
Post by Genoman on Sep 5^th, 2004, 11:18pm

Jonny, I just hope I can get another four year break after this bout.
BTW, if you had them CH for 30yrs how old were you when they started. You look pretty young on your site. wouldn't know by the teef. hehe.
oh yea, cool art!

Title: Re: Holy Moly WWW worked for ME!!!!!
Post by nani on Sep 5^th, 2004, 11:25pm

When I first found this site, I, too was feeling guilty because my suffering didn't seem as bad as some. I've since learned that since I'm a "chronic" it's kind of a trade off. I get 'em everyday, just not as intense. I was also a little apprehensive because of some of the anger that comes out in the posts. I've since decided that we're all a little grumpy - probably pain induced. Hang in there - it seems we're all here for each other... ::)

Title: Re: Holy Moly WWW worked for ME!!!!!
Post by don on Sep 5^th, 2004, 11:52pm

I love it when he takes his teef out. 8)

Title: Re: Holy Moly WWW worked for ME!!!!!
Post by nani on Sep 6^th, 2004, 12:33am

By the way - nice teef Jonny - I got some o' those myself. Much sturdier and prettier than my originals. On that note though - I had serious teeth problems all my life. Every molar ended up with a root canal. I don't know if there's any connection or not. It's weird that so many of the other clusterheads and I share a lot of (unrelated to clusters?) physical symptoms. Facial tics, Tri-geminal nerve pains, prior head trauma, bad teeth .... Hmm....

Title: Re: Holy Moly WWW worked for ME!!!!!
Post by Giovanni on Sep 6^th, 2004, 4:46am

Hi Genoman,

Welcome! This site has literally saved me as well as many others. The best advice I can give you is to study and become as knowledgeable as possible. Be proactive in your treatment. Many doctors to not have a clue about CH as it is rare (aren't we lucky?).

BTW, you have a few other clusterheads in New Orleans area.

John
:)

Title: Re: Holy Moly WWW worked for ME!!!!!
Post by synergy on Sep 6^th, 2004, 5:04am

Welcome to the site!

BTW...Nice teeth johnny, ;;D

Title: Re: Holy Moly WWW worked for ME!!!!!
Post by Jonny on Sep 6^th, 2004, 4:11pm

on 09/05/04 at 23:18:52, Genoman wrote:

Jonny,
if you had them CH for 30yrs how old were you when they started. You look pretty young on your site. wouldn't know by the teef. hehe.
oh yea, cool art!

12 years old and chronic right out of the gate, turned 42 Saturday but have recently went episodic with a five month PF streak.

Now the fuck is back on me and on me good ;;D

......................................jonny

Title: Re: Holy Moly WWW worked for ME!!!!!
Post by Kris_in_SJ on Sep 6^th, 2004, 8:07pm

OK - all this talk about teeth and root canals has me wondering - not about you, Jonny, cause your teeth look really nice!

Is it possible, do you suppose, that Clusterheads are having root canal work even when they don't need it? We all know about pain radiation to the jaw, mouth, throat, ear, etc. along the branches from the Trigeminal. Is it possible that what might seem like a "bad tooth" could actually be pain coming from a cluster? Kind of like a tooth "shadow?"

Don't laugh, guys! I'm just curious - might even make an interesting new thread......

Kris

Title: Re: Holy Moly WWW worked for ME!!!!!
Post by Jonny on Sep 6^th, 2004, 8:53pm

In my five years here many, many people have said they had teeth out thinking that was the problem.

Not sure thats what your looking for but thats what I have read over the years.

.......................................jonny ;;D

Title: Re: Holy Moly WWW worked for ME!!!!!
Post by Redd715 on Sep 6^th, 2004, 9:09pm

on 09/06/04 at 20:07:19, Kris_in_SJ wrote:

Not even just shadows Kris....I've been woke up many a night with the feeling like wood splitting wedges were being rammed between my molars and I have three broken teeth on the left side from many times trying to rip my OWN teeth out to make the pain stop.

Title: Re: Holy Moly WWW worked for ME!!!!!
Post by nani on Sep 6^th, 2004, 9:43pm

I know that kind of tooth pain. I suffered a great deal with those. I don't know about shadows though. My teeth were really bad before I ever had a cluster. It's an interesting possibility I guess [smiley=confused2.gif]

Title: Re: Holy Moly WWW worked for ME!!!!!
Post by Jonny on Sep 6^th, 2004, 9:48pm

Follow the yellow nerve...its the CH nerve.....Hmmmmmm

http://im1.shutterfly.com/procserv/47b3db29b3127cce9799793c4e800000001610

................................jonny

Title: Re: Holy Moly WWW worked for ME!!!!!
Post by vig on Sep 6^th, 2004, 10:22pm

I count my blessings and I know I'm lucky....
eye trouble only, never had it go to the jaw or teeth.
Maybe we're all wired a little differently.

Title: Re: Holy Moly WWW worked for ME!!!!!
Post by ExplodingEyeBall on Sep 7^th, 2004, 8:43am

on 09/06/04 at 21:48:17, Jonny wrote:

Follow the yellow nerve...its the CH nerve.....Hmmmmmm

http://im1.shutterfly.com/procserv/47b3db29b3127cce9799793c4e800000001610

................................jonny

jonny....

Where in the hell did you find my senior picture???

Title: Re: Holy Moly WWW worked for ME!!!!!
Post by Genoman on Sep 7^th, 2004, 12:41pm

on 09/06/04 at 20:07:19, Kris_in_SJ wrote:

Hey Kris, usually a good dentist will do what it takes to keep you from havina root canal or having teeth pulled. My dentist showed me that my tooth was infected somehow. It's been a long time so I'm don't remember what his MO was in doing so. I know I did not get a root canal just because my tooth was hurting.

This still prompts the question that why did 2 seperate root canals turn the lights off on my cycle? Remember, I went 4 years without another cycle after those root canals. My cycle started back only after I went back to the doctor and had one of those root canals pulled.

Please, please, please, not matter how tempting it may seem. Don't run out and get your teeth pulled looking for relief on my word. I am only trying to figure out why my mind sontinues to try to connect the two.

I think it would be a good idea to start a new thread so I'm soing to do so. Please post your follow ups there.

thanks again guys for all the support you have given me so far. BTW, I tried getting an appoitment this morning with a specialist at Tulane and she can't see me until March 28th. Yea right!

My primary care phycian finally called me back and is leaving me with samples of Zomig nasal spray and tabs. That will get me started.

Title: Re: Holy Moly WWW worked for ME!!!!!
Post by Kris_in_SJ on Sep 7^th, 2004, 8:18pm

Good God!!!

Would that be March of 2005??!!

Take all the info you've been given to your GP. If he/she is someone who's open-minded and willing to listen and try things, you might be better off. I think I posted this link for you, but will do so again. Good luck!

http://www.future-drugs.com/admin/articlefile/ERN020304.PDF

Hugs,

Kris

Title: Re: Holy Moly WWW worked for ME!!!!!
Post by Genoman on Sep 8^th, 2004, 12:12pm

Kris, thanks, I don't remember seeing that link in past. I will definatly look into it over during lunch today. BTW, My GP is awesome. She has gone above and beyond to help me with every ordeal I have ever had. Normally a visit with her last 1 to 2 hours. She goes over EVERYTHING. She works out of her home and will even show up at my office if I need her to. She only keeps up about 30 patients. It is like no other experience I have had with other physicians.

Also, I picked up the Zomig yesterday. I usually get my HA between 5:00 PM and 11:30 PM. Yesterday I began feeling one coming on about 6:00. When it got to a KIP3 I shot the nasal injection. Within approx 20 minutes I was up walking around again feeling good. I figured I only delayed it till 11:30 but I fell asleep around 9:30 and didn't wake up till 6:30 AM. Life was good yesterday.

Title: Re: Holy Moly WWW worked for ME!!!!!
Post by Gator on Sep 8^th, 2004, 8:42pm

on 09/08/04 at 12:12:27, Genoman wrote:

That's a hell of a doctor you got there. Teach her all about ch and she's a keeper for sure.

WTF??? What is it with all these people saying Zomig NS keeps the beast at bay for anywhere from 10 to 24 hours??? Don't get me wrong, I am happy it does this for you, but I can abort a hit with the ZNS and be getting clobbered again an hour and a half later. It's just not fair! [pouting] Oh, well. I love how well Zomig aborts, but due to insurance company crap I am now on Imitrex Injections. Just picked it up this afternoon. Waiting for the next hit so I can see how well it works for me. Yes I have waited over 24 hours already. (For those of you new to the game - NEVER MIX TRIPTANS) 24 hours with nothing but O2, so I am primed for this.

Title: Re: Holy Moly WWW worked for ME!!!!!
Post by Genoman on Sep 9^th, 2004, 12:40am

Hey Gator, Sorry to hear that with the ZNS. This is my 2nd day aborting a HA after about 25 mins. I wish you my kinda luck with the Imitrex though. I still on samples though. I haven't tried getting my script filed. I hope I'm not in for too big a surpise with the insurance deal when I go to get it.

Know whats funny. I almost didn't beleive the Zomig was helping me so I keep waiting to the SOB is really starting to crest before I take it and watch the clock. So far it has been consistant. knocking on wood again.

Later guys