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        Cluster Headache Help and Support >> Cluster Headache Specific >> All this Meds?
        
(Message started by: Jobette on Sep 27^th, 2007, 11:57pm)

Title: All this Meds?
Post by Jobette on Sep 27^th, 2007, 11:57pm

I guess I am just wondering how long we have to be on all these meds. I am currently taking Verapimil, Neuoritin, Lithium, Imitrex, and O2. I say this because even thou I take all this shit I am still having to go through the headaches. I am wondering if it is worth it or not. The only thing that I can be for sure of is the Imitrex and the O2. The rest of the bullshit is just that, because it makes me feel bad and I still have to fight the beast. Is there a doctor out there that is closer to finding out anything about this, or do they even care??? I have been going to the same doctor for about 4 yrs now and nothing has changed. The same old meds, up this one, add this one, and I am still going through the headaches. My husband is ready to camp out at the Mayo clinic, and I don't know if they can help or not.Yes I am depressed, yes I am tired, and yes I even feel a little hopeless, but yes I do know that this one will end just as the others, but DAMN why all these meds if they don't work. Someone must have an answer. I am ready to get off all this stuff and see if it makes a difference. If they can treat me like a guinnie pig, then why not take matters into my own hands.
I am tired, tired, tired!!! Tire of the headaches, tired of having to explain something that I don't understand (why me), tired of feeling like a zombie that is only living to work. I want to look like myself and I want to feel like myself. I want to wake up an this shit be over. I am tired of being afraid of sleep because I know what is waiting in my sleep, I guess I am losing it, I don't know. Someone must have an answer to the cluster thing. I guess I do need to talk to a psyc doc! I even sound crazy to myself.

Title: Re: All this Meds?
Post by nani on Sep 28^th, 2007, 12:56am

Hopelessness is not allowed, Jobette.

I can relate to what you're going through. In 2005, 5 years into a cycle, I was on most of those meds. And I was still getting hit 4 - 6 times a day.

Then I found kudzu, and it worked really well for me for a while. When it stopped working, I started using Clusterbuster treatments. They worked even better. I still do battle now and then, but the improvement has been HUGE.

Read about kudzu here:
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1110584362

And CLusterbusters here:
www.clusterbusters.com

Hang in there. There's ALWAYS hope.
hugs, nani

Title: Re: All this Meds?
Post by sandie99 on Sep 28^th, 2007, 3:17am

Jobette.... [smiley=hug.gif]

I got tired to all the meds and their side effects and became my own doc.

All I do now is to run to get energy drink or caffeine tablet when I feel a hit coming. It works better for me than the treatments before. Not perfect, but far better than the treatments I tried in the past.

I understand how you feel very well. I've lived with clusterblues more than once and asked often when the pain ends. But I also know that it's important to remember that each time when you realize that something is not working for your ch, you're a step closer in finding that treatment what will. :)

Don't lose your hope. [smiley=hug.gif] You WILL be PF again, you WILL!

PF days,
your sister in pain,
Sanna

Title: Re: All this Meds?
Post by Emily on Sep 28^th, 2007, 4:13am

Hi Jobette,

Hang in there. I'm only at the beginning of my ch journey, so I won't even claim to know what you're going through right now, but know that I (and lots of other people here) are happy to be of support in any way we can.

I've been suffering with what I now know to be 'clusterblues' (I'm stealing your term Sanna!). I didn't realise until I came here and I was suffering before my official CH diagnosis was made (I realise now, of course). Coffee has helped a bit - extra strong with sugar just takes the edge off and breathing cold air from the freezer (sounds crazy, but I read it here somewhere!).

I'm not keen on all the meds - mixing and changing and the effects it has on your body for the little relief it provides. I didn't even drink coffee (or sugary drinks) before this started. I'm now being forced into liking it and being on a permanent caffeine fix. If your body is used to caffeine, lots and lots of people rave about the energy drinks too. Anything has to be worth a try, right?

Keep at it. There is something out there that will work for you. You just have to keep looking. Make sure you've got a good support network too, with people at home, or here on the board. They will pull you through this, kicking, screaming and dancing the dance!

Em
[smiley=hug.gif]

Title: Re: All this Meds?
Post by Jobette on Sep 28^th, 2007, 6:53am

I am almost sorry for losing it, but ::) I have tried to be committed to taking these prescibed drugs as directed so that I could be for sure if they worked or not, but all I can be for sure of is the side affects :-[ but none the less it is a new day and I am going to treat it as such [smiley=laugh.gif]. I only had a mild one at 4 :12 am that I treated with imitrex nasal a shot of redbull and O2, and by that time it was time to get up for work, and I am proud of that, the mild HA that is. See, I am actually a sane woman, but pain seems to do something to you and I am afraid of "that". But I can see for myself that weeping does endure for a night because joy is here this morning! ;;D Until the next time, Jobette :-*

Title: Re: All this Meds?
Post by DennisM1045 on Sep 28^th, 2007, 7:11am

Hi Jobette! Less than 7 hours! Nice turn around ;;D

Vent all you want. We're here to listen and we understand where you are because we've been there ourselves. Keep your head up and listen to your heart. You've been dealing with this for four years now. You know deep inside what the right course is. Traditional meds or alternatives ... there are solutions out there. It just takes a while to find the right combination for you.

-Dennis-

Title: Re: All this Meds?
Post by sandie99 on Sep 28^th, 2007, 8:09am

Jobette, nice to see that there's improvement! :)

PF days,
Sanna

Title: Re: All this Meds?
Post by Guiseppi on Sep 28^th, 2007, 10:14am

Love ya Jobette. we all go where you just were and we all get to giddy when we see you come out the other side. Hang in there.

Guiseppi

Title: Re: All this Meds?
Post by Hikerguy on Sep 28^th, 2007, 1:56pm

Good to see the improvement.There is always light at the end even though it may seem light years away...But there will be brighter days ahead...We all get the clusterblues now and then..I am just winding down from 8 months of pain this year and I am almost to the light at the end of the proverbial tunnel....Wishing you all PFDAN
Take care Chris

Title: Re: All this Meds?
Post by Rosybabe on Sep 28^th, 2007, 2:35pm

Jobette, we are here for you OK? :-*

Hugs

Rosy.

Title: Re: All this Meds?
Post by Lotus on Sep 28^th, 2007, 4:44pm

[smiley=hug.gif]

Hang in there Jobette, this too shall pass.

Title: Re: All this Meds?
Post by Miz_D on Sep 30^th, 2007, 5:58am

Hey Jobette,

Damn girl, thanks so much for sharing your frustration... it REALLY helps to know we are not alone.

I, too have had some very dark moments in my CH journey, moments when I was sure I couldn't go through one more day of the pain. It seemed that all I ever felt was scared, frustrated, angry or depressed...I couldn't leave my home for weeks on end because I was being hit every time I turned around and nothing was working, nothing was helping. It was a surreal time, one in which I seriously thought alternatives like jumping in front of moving cars were worth considering.

When I remember that, I am so damn proud of myself... of all of us really...for having the courage and strength to carry on in spite of CH and I'd like to think that my experience with chronic pain and the challenges it has presented me in my life, have made me a stronger, more compassionate person who can face anything life throws at her and is smart enough to savour every painfree moment knowing that it is nothing to take for granted.

We all deserve a round of applause and the utmost respect just for being here in this world, dealing with our 'condition' with whatever dignity we can muster...and I just wanted to tell you how grateful I am that you share your vulnerability with us, because I feel that each time we do, we give others permission to do the same.