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        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> Its been awhile, sos guys
        
(Message started by: snook on Feb 17^th, 2005, 6:25pm)

Title: Its been awhile, sos guys
Post by snook on Feb 17^th, 2005, 6:25pm

Man its been awhile, I had foot ( bone surgery) I need not say no more. Anyway Ive missed you all and once again I need your help. I have tried to convince Bill to get involved on this site , he keeps saying it bums him out and well Im just not going ,to push . Anyway EVERYDAY he has shadows 2 or 3 today I made him eat which is very hard as so many of you guys know, just frozen french fries and he had a full blown ch. I finally got him to see another nero, he is a vet VIET NAM , so the nero is a va doctor . Anyway he was perscribed Tropiramate its a seizure med. 25mgs 1 then 2 and so on , it seems to give him a vertigo like feeling. Im open to hear any imput from ANYONE WHO MIGHT HAVE BEEN ON THIS DRUG!!!!!! Also and this is a BIGGY Im going to show the responces to this sos, I dont want to beg , but I want to reach out to any and all of you maybe you can articulate to BILL THAT THIS SITE IS NOT A bummer BUT TRULEY a great way to just shoot the shit , Hes on zomeg, pain meds for the back surgerys and the chs you know me SNOOK I need your help all of you my Nani, Gater AND JONNY PLEASE iVE TOLD YOU BEFORE ABOUT MY MAN , GUITAR PLAYER BLUES I LOVE HIM AND IM STUCK GUYS I NEED YOUR HELP TO GET HIM TO REALIZE HOW HELPFULL THIS SITE IS PLEASE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! look hes not pc savy, so Ill get him on guys remember way back remember? As Ive mentioned before hes always been a thin guy but do to the constant chs and the meds my guy is 54 and he weighs what he did when he was 16 man. Okay Ive gutted my heart to you the ball is in your court and I dont mean that in a bitchy way but ......... well I he My husbands name is BILL , I CALL HIM BUZZ AS YOU CAN I NEED YOU GUYS PLEASE IM NOT ASKING FOR ANYTHING MORE THAN JUST A BULL SESSION , MY MAN IS BUZZ AND I LOVE HIM, Thanks god bless to all Ive missed ya and Im ....snook reaching out [smiley=confused2.gif]

Title: Re: Its been awhile, sos guys
Post by Frank_W on Feb 17^th, 2005, 7:08pm

There are a number of other Vietnam veterans, and veterans of various wars since then, on this board as well. We come from all walks of life. A person doesn't have to be PC savvy.

If you have cluster headaches or if you are a supporter, whether you are in cycle or in remission, it doesn't matter. This is the ultimate "come as you are," party. Just show up and introduce yourself. People truly want to help, and on the general board, there are plenty of jokes, Jeeps, songs, poetry, photos, whatever... It hardly seems fair to form a judgment until you've given it a try.

My best to you and your husband, Snook.

-Frank

Title: Re: Its been awhile, sos guys
Post by ghost62 on Feb 17^th, 2005, 7:27pm

He is more than welcome ... look they even let me be here. [smiley=headbanger.gif]

Title: Re: Its been awhile, sos guys
Post by floridian on Feb 17^th, 2005, 8:17pm

Topiramate is the generic name for Topamax - I haven't tried it, but many around here have and call it Dopey-max cause it can slow a person down or affect their memory, etc.

Hope your hubby does come around, he might like it.

Title: Re: Its been awhile, sos guys
Post by vig on Feb 17^th, 2005, 8:20pm

Hey Buzz, how ya doin'?

Title: Re: Its been awhile, sos guys
Post by nani on Feb 17^th, 2005, 8:33pm

Hiya Buzz... you ought to stick around a read some...we've been known to have a laugh or two. There's a few Vietnam vets around here, too. My husband was in country in 70 and 71. Bob P, Bob G, vietvet2tours, sailpappy (I think) ...anyway...when you feel comfortable enough you can post or even just send PMs to the folks you want to talk to. We love snook...she seems like a great supporter...so we'll probably love you, too. ;;D

Title: Re: Its been awhile, sos guys
Post by sandie99 on Feb 18^th, 2005, 1:23am

Topamax did make me dopey... that's for sure. All I got was 24/7 ha.... But I do hope that you'll find the med which works for Buzz. :)

In the meantime, Snook & Buzz, you both should come here when you can! This lot makes ch so much easier to bare. Advices, support, jokes, stories... we've got it all. Like a real family... :)

You're warmly welcome, anytime. :)

Best wishes & PFdays,
Sandie

Title: Re: Its been awhile, sos guys
Post by Gator on Feb 18^th, 2005, 3:00am

Welcome back Snook! Hey, Buzz! Come on in out of the cold, man. This ain't one of those cry in your beer, poor me places. We share information, give each other encouragement and just generally shoot the shit. We find that laughter is often the best medicine and we do a lot of laughing. We get on each others nerves at times and sometimes just flat out fight amongst outselves, but at the end of the day we are here for our fellow clusterheads. In short we are a family, dysfunctional, but none the less family. Whether you claim us or not you are a part of this family, too. When one of this family gets down, we do what we can to try to bring that person back up either with gentle words or a swift kick in the pants. Trust me, a large percentage - maybe most people here are no rocket scientists when it comes to computers and the internet. Dive on in. The water's fine.

Topamax? Yeah, buddy. I tried Topamax. Dope-a-max is more like it. Made me dumber than a bag of hammers. I swear I lost 50 IQ points on that stuff an I don't think I've recovered them all yet, either. My wife had to take my car keys as she and the boys were afraid to ride with me. Kiss your taste buds goodbye, too. Carbonated beverages, like Coke and Dr. Pepper taste flat and just plain nasty. Besides all this lovely stuff, Topamax made my headaches worse and gave me terrible nightmares. But, HEY! It actually works for a lot of people.

One thing you will find is that when it comes to what works and what doesn't we are all different. What works for me may not work for you and vice versa. What works for you today may not work in your next cycle. What doesn't work for you this cycle may work the next time around. It's all just trial and error until you find that magic combination. I have been having the attacks upwards of 8 times a day on a bad day for 16 months without a break. In that 16 months, I have had one primary care doc and two neurologists and have tried 18 to 20 or more different meds trying to find a preventative that works for me. So far - nothing has worked. All I can do is abort them as they come either with oxygen (best thing since sliced bread) and Imitrex injections. Trex Rocks!

Well, sorry for the length of this. I tend to get long winded at times. Just know that you are already a part of this great family and your brothers and sisters would like to meet you.

Title: Re: Its been awhile, sos guys
Post by BarbaraD on Feb 18^th, 2005, 5:25am

Topamax was my WONDER drug. Put me in remission for a long time (but quit working after several years). Short term memory is one of the side effects. I learned to take it at night before bed and never had the dopey day time effect a lot had. Also learned to put post-it notes on everything.

My neuro switched me from topamax to zonergram and I did get vertigo (one of the side effects).

What dose is Bill on with the topamax? Have him take the full dose at night before bed and see if this doesn't clear up some of the side effects.

Good luck and hugs to you BD

Title: Re: Its been awhile, sos guys
Post by Renee on Feb 18^th, 2005, 6:16am

Hello Snook and Buzz,

Add me to the list of previous dopeymax users. I was switched over to Zonegran and all drowsiness and vertigo disappeared within a couple of weeks and it is very effective for me. The trick is you must titrate up or down slowly, such as 25mg per week, until you have reached your optimal dosing level. Some have started out at 100mg and the side effects are worse.

What pain meds is Buzz on for his back? If it is narcotics have you considered the chance that he could be getting rebound clusters as well?

I hope Buzz decides to read and visit. We are all just a bunch of cluster sufferers and supporters trying to help each other.

hugs
Renee

Title: Re: Its been awhile, sos guys
Post by JJA on Feb 18^th, 2005, 9:24am

Blues guitarist? Hey me too.

This website is not a place to come and cry about CH, well, that's a small part of it, but mostly it's a place to get answers to questions about CH. Usually you get answers before you even think to ask the questions. I'm coming up on a year pain free. This site's sharing of information is the main reason.

There are many people here who talk, joke and fight like friends and family. There are also a lot of people like me. I come here to learn about CH (OK, I get dragged in the occasional political discussion). I can ignore most of the "jibber-jabber." I don't have to say anything. If I choose, I can just read. In fact that's what I did for a few years before I ever posted.

I was very hesitant to participate here. Something about an "online community" weirded me out. Whenever I wanted information on CH, however, I ended up here. Eventually I decided to stay.

The best thing about this website: You learn to treat yourself instead of depending completely on doctors.

Jesse

Title: Re: Its been awhile, sos guys
Post by rickyshot on Feb 18^th, 2005, 11:33am

Snook You sound like a gem of a supporter. I too was on Topomax for two weeks and in that short period of a time, I turned into a zombie, suicidal, psychotic wreck. I had a very bad reaction to it. Even the doc was surprised as psychosis is very rare. It was the scariest place in my mind I have ever been too. Unfortunately most of the neuro meds although well meaning and even helpful to people have excrutiating side effects as you are literally messing around with brain chemistry which rules the body and mind. So to add to our woes of chronic pain and feeling like shit half the time, we have to depend on meds that could literally finish us off. Sigh.......... :-/