Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> this pain has got to stop
        
(Message started by: pete_k on Apr 12^th, 2005, 12:24pm)

Title: this pain has got to stop
Post by pete_k on Apr 12^th, 2005, 12:24pm

hi everyone, im a 19 year old male from manitoba, canada. i've been getting clusters for about 3 years now, im currently starting my 4th cycle. yesterday i wrote 2 final exams on no sleep at all, and today i lost my job of 6 months for walking out when it was busy for the third time in a week.

my last cycle ended in mid december, and it had lasted over 3 months, and here i am 4 months later just starting up again. i dont know how the rest of you deal with these but they are ruining my life. ive spent so much time in bed, but so little time actually sleeping.

if i don't lose my mind, ill surely hurt myself. do they every go away? has anyone had a success story?

i have more questions but it's that time again

Title: Re: this pain has got to stop
Post by nani on Apr 12^th, 2005, 12:30pm

Hi Pete...I'm sorry you're suffering so much right now. You've found a place to get all the support and understanding you need. This place has literally saved some of our lives.
Are you using oxygen or any meds to abort your attacks? Are you taking any preventative meds? Tell us about it, we may be able to offer some advice.
In the meantime, hang in there, hun. The pain will pass and it won't kill you.
Hugs and pain free wishes, nani [smiley=hug.gif]

edited to add: there is no cure for CH, but there are a number of treatments.

Title: Re: this pain has got to stop
Post by Margi on Apr 12^th, 2005, 12:39pm

Hi Pete,
I'm so sorry to hear you're battling the beast. :(

We have some Canadian sufferers in your area who might really be able to give you a shoulder. One thing you can try is generic gravol - they are sold at Shoppers Drug Marts and London Drugs and are available without a prescription. They promote sleep as a side effect but don't let you get into REM sleep - which is where most of the nighttime attacks occur. Melatonin has also recently been approved in Canada and some folks are finding relief with that. Generic Benadryl can also help. Pick one - don't try all three, ok?

You can also use ice at onset to help keep you calm and keep the pain down to a dull roar. My husband uses those gel-filled sports packs (also at Shoppers or London Drugs). He puts one in a cloth gift bag and just lays it on the back of his neck at onset and it really does help him.

Please know that we do have a Canadian website with a message board just like this one if you'd like some local flavour. http://www.clusterheadaches.ca.

Hang in there, kiddo - you're not alone with this.

Hugs,
Margi

Title: Re: this pain has got to stop
Post by pete_k on Apr 12^th, 2005, 1:35pm

thanks for the positive replies! so far i have seen 2 neurologists but i am seeing one who is more framiliar with clusters in a couple of days. so far i have been persrcibed imitrex as an oral, and imitrex 5mg as a nasal spray. the nasal spray i havn't tried yet (i pick it up tonight) but the pills did little to nothing.

i will definately try the ice pack, as well as gravol as i always have some of that at home.

thanks alot guys! im registering for the canadian site now

Title: Re: this pain has got to stop
Post by Marta on Apr 12^th, 2005, 1:45pm

Hey Pete,

I'm really sorry to hear of all the trouble you're going through. I found that the talets took too long to help. Maybe you could try the injections. They work within 5 minutes for me. I've taken verapamil but as my blood pressure was low before I even started taking them I ended up feeling so weak that I stopped taking them and within 24 hours I'm feeling stronger. The CH still comes to visit but the injection 'knocks' it on the head!

If you have a look at the imigram tips on the left you'll find they last even longer.

Loads of good luck

Marta

Title: Re: this pain has got to stop
Post by sandie99 on Apr 12^th, 2005, 1:55pm

Pete,
I am so sorry that the beast is giving you so hard time now... [smiley=hug.gif]

Like nani mentioned, there is no cure, just treatments. But I'm living in hope. My neuro said that I have to live with ch for the rest of my life. I know that for some the beast just vanished at some point and didn't return. I hope that'll happen for all of us.

Until then, I'll be a chronic.

I wish you the best in your battle againts ch. :)

Sandie

Title: Re: this pain has got to stop
Post by mynm156 on Apr 12^th, 2005, 2:23pm

Hey Pete,

We all feel your pain! I am sorry to say treating these is kind of hit and miss. What might work one time for you might not really work another. it is best to find a Doc with some experence but be assertive and dont let them just Oh Well you. I always ask ok what do I do if this doesnt work? I also say dont let them say ok see me in 4-6 weeks. I say follow up every couple till you find something is helping. Dude if these ever went away we probably wouldnt be here. Just remember that everyone here knows what U R going through and for alot of us myself included that alone helps some!

Good Luck and Good Vibes,

Your Brother in Pain

MYNM156

Title: Re: this pain has got to stop
Post by jorgeu on Apr 12^th, 2005, 2:29pm

I know how you feel I am in a cicle now, I am a 38 yrs old male, and I have been having clusters since I was 18, my last cicle was on Dec 2003, I was doing well and now they are back, I don't sleep more than 2 hrs...it's very hard. if you have any questions about medicines or anything I will be happy to answer.

Title: Re: this pain has got to stop
Post by SusieWong on Apr 12^th, 2005, 2:46pm

Hi Pete,
I'm sorry that you are being hit so badly at the moment. Be strong and hang in there. Different medications work for different people. As Marta said, the Imitrx injections work fast.
Do ask your neuro about oxygen, if you are not already using it. ;)

Keep smiling, ;;D

SusieWongx

Title: Re: this pain has got to stop
Post by BlueMeanie on Apr 12^th, 2005, 2:52pm

Welcome Pete,

It's hard dealing with this monster. I'm glad you're getting the nasal spray. It should make a BIG difference, as it works pretty good for most people. You can hide for a little while, instead of taking the rest of the day off when at work and such. The injections work faster though. Hang in there, i'm sure your cycle will end soon. Check into getting some prevents too. They may reduce the amount of attacks per day for you.

PF Vibes heading your way !

Title: Re: this pain has got to stop
Post by Margi on Apr 12^th, 2005, 4:57pm

Yeah, Pete, the trex pills take too long and leave you with too much of a med hangover. My hubby uses the spray but he gets it in the 20mg strength. It will abort usually within about 10 minutes for him, especially if he sits down with the oxygen.

Not surprisingly, 'trex spray in Canada comes in both 5mg and 20mg dosages. Same price though. Go figure. ::)

Looking forward to seeing you at OUCH Canada's site :)

Title: Re: this pain has got to stop
Post by pete_k on Apr 12^th, 2005, 8:41pm

thanks for all the great replies guys! i went and got my nasal spray (5mg) and the minute i got home i needed to use one. thankfully, it worked! it took about 20 minutes, but after about 10 i could notice the pain getting lighter.

it's too bad these things are so expensive, when i need more i will try the 20mg, my doctor said i should be getting those next time anyways.

what i need to know is, what is a good preventative? im drinking a TON of water in hope that the water X3 treatment will work for me.

Title: Re: this pain has got to stop
Post by pete_k on Apr 12^th, 2005, 8:50pm

oh one more thing, does anyone know how much the injections cost compared to the spray?

Title: Re: this pain has got to stop
Post by Marta on Apr 16^th, 2005, 5:21pm

Hi Pete,

How's it all going today?

I'm lucky because I get the shots on prescription here where I pay certan amount a year and that covers all my prescription costs. Without that I'd be a pain riddled bankrupt.

My thoughts are with you, hope you get some rest

Marta