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        Supporter's Corner >> Supporter's Corner >> Scrared and don't know what to do!
        
(Message started by: linuxgangster on Mar 16^th, 2008, 11:59pm)

Title: Scrared and don't know what to do!
Post by linuxgangster on Mar 16^th, 2008, 11:59pm

Hey everyone,

The password retrieval system for the forum seems to be down. Anyway, my user name here is normally natas777.

Some history:
I was a chronic sufferer for about I am guessing 7 years. I rarely went one day without atleast one attack. I went through multiple types of meds ending with Lithium/Depokote combo with Imitrex shots. Then by some weird miracle the clusters went away.

That is until about 2 months ago. I have been pain free for close to 2 years. During that time I managed to loose 40 pounds by working out everyday and eating healthy, I quit smoking, and I met a woman and got engaged. Pretty awesome huh!

Now, lets see here. About 2 months ago around 10pm I got that feeling I usually got right before I felt a attack coming. I ignored it, but then about 5 minutes later out of no where a attack! Next thing I know I am in my bedroom doing the fetal position rock and roll dance to try and ease the pain. I find a emergency imitrex shot I had in my medicine cabinet and take it...it works about 15 minutes later. The attack was about a kip 5...nothing to bad...but considering I havent had a attack in a while it seemed much worse.

Now the past 2 weeks have been the worse. I have been getting on avg 2-3 attacks a day. They (like the past) have been almost clockworth. 2 hours after I eat I am getting one, then around 2 or 3 in the morning I get one and on a bad day i will get one at 6am or in the afternoon.

Look, I am here because I am freaking out. I lived a normal life and now the beast seems to be back. I am sorry but I don't want to be that person I was 2-3 years ago. Lithium was way to much for me. Hell, that pain was way to much for me. I am so freaking scared right now. Could it be that I am just to stressed in life right now and that I am getting clusters again because of my upcoming wedding.

More background...my wedding is next month...and I started a new job last week.

What about food allergies. Would it be worth my time to get this checked out. My family doctor suggested I do this before going back to my neurologist.

Title: Re: Scrared and don't know what to do!
Post by thebbz on Mar 17^th, 2008, 12:02am

screw all that scared crap. Kick some demon ass.
all the best
congrats on the wedding
thebb

Title: Re: Scrared and don't know what to do!
Post by Charlotte on Mar 17^th, 2008, 12:17am

I understand about being scared. Your life is going in a positive direction, new love, new job, and bam, old beast.

We can only do our best, and deal with it as it comes. Get your arsenal together, and enjoy life between the hits.

Congratulations on the new job and your marriage.

Charlotte

p.s. Why not ask your doc for a referral to the neurologist, since it takes awhile to get in, and have him or her do the allergy testing in the mean time.

Title: Re: Scrared and don't know what to do!
Post by Linda_Howell on Mar 17^th, 2008, 6:24pm

Quote:

Look, I am here because I am freaking out.

Well, you just stop that right now. ;)

If you are back in cycle it was because it was time, that's all. Probably has nothing to do with food whatsoever.

When you see a Dr. make sure you ask for a script for oxygen. You need will one when you go to a medical supplier and ask for e-tanks, a non-rebreather mask and a regulator that goes to 15 lpm.

There are other preventatives you can try besides Lithium. Ask him about Verapamil or Caffergot or a number of others. Imitrex and oxygen are kind of a "Mainstay" in the abortive catagory.

Stop stressing, we'll all help you in any way we can. Ask questions and read a lot around here.
http://www.ouch-us.org/index.shtml

When you see the Dr. you need to be as informed as possible. There are some new things you can try too.

Energy drinks with Caffeine and Taurine in them. (Amp, Rock Star, Rip-it, Red Bull)

Kudzu. Find it in the health food stores.

Linda

p.s. Did Kirk give you that suggestion for a screen name by any chance. ;;D

Title: Re: Scrared and don't know what to do!
Post by linuxgangster on Mar 18^th, 2008, 11:37am

Well I just got back from battling a horrible kip 8 here at work with no meds :( All I had on me was a ibprofin so I popped that went to the bathroom here at worked, grabbed a wet paper towel and tried my best to not make any noise. The headache is now down to about a kip 1 or 2, its just a annoying pain behind my eye now thats dull. Its raining cats and dogs outside right now.

Anyway guys, I guess I am back to being a chronic sufferer again. I just don't want to be the lab rat I had to be with all the different meds in the past. Here is a list of everything I had been on.
Topomax
Verapamil
Zoloft
maxalt
imitrex
Depakote
Lithium
prednisone

I think there were a few others, plus take a bunch of the two above and mix and match. Also, take my weight and add/subtract it it by 20 over and over.

Title: Re: Scrared and don't know what to do!
Post by linuxgangster on Mar 18^th, 2008, 11:38am

Oh and my name, I got all by myself ;) I run a site called linuxgangster.org

Title: Re: Scrared and don't know what to do!
Post by Kirk on May 2^nd, 2008, 11:08pm

I would ask for a referell to a Neuro right away. O2 and Imitrex seem to be the best abortives around these days.
Then I would start looking into preventatives. But for right now aborting the beast as quick as you can, is probably your best move.
Over on the left is some great info you can read, and print out to take to your Doc on O2 etc.
Don't mind Linda. She blames me for her phobia about Penguins and real computer operating systems. And she thinks I'm Linus Torvalds in disguise.
[smiley=smokin.gif]

Title: Re: Scrared and don't know what to do!
Post by MinxKittten on May 6^th, 2008, 3:17am

hi, sorry the beast is back at this crucial stage in your life....hope your bride loves you no matter what, as she should, and will help you through this.

the stress could be a factor, but no telling for sure.

my hubby also gets HA after eating. we just added TAURINE supplements with every meal and that is helping ALOT. he was in the worst cycle EVER with 4-6, K9-10's per day.

his current regimine is:
240 verapimil
2 topamax per day
1000 mg Taurine with every meal or snack
plenty of coffee
ISOPURE protein drinks
no msg, alcohol, tomatoes, or vinagar
focused on more natural organic food, with plenty of protein.

last 2 weeks, some PF Days!!! and the other days, just 1 or 2, short K1-2's

hope you find your arsenal for this go round.

Title: Re: Scrared and don't know what to do!
Post by Cathi_Pierce on May 6^th, 2008, 2:20pm

Hi Linux,
I am sorry the beast found you-he is one mean SOB and manages to strip a lot of fun out of life.............BUT...........
1-a woman who loves you completely....one who is willing to commit her life to you will take you exactly as you stand. I hope you will sit quietly with her, while not getting hit, and give her the info she needs to understand what CH is. PLEASE don't hide it from her....it is an affliction, not the definition of who you are.
2-In your arsenal, I didn't see 02.....please give it your best try!
3-Listen carefully to what people around here have to offer, and always remember, CH is NOT your life.......

Please keep us posted. Invite your fiancee over to check this place out, and remember to inhale and exhale.

You have so much good happening in your life right now....new job, new marriage coming up.......you are stronger than the beast, and YOU will prevail.........

Keep in touch, and

PFW!

Cathi