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Cluster Headache Help and Support >> Cluster Headache Specific >> still dancing the night away...
(Message started by: thanksdad on Oct 20th, 2007, 3:40pm)

Title: still dancing the night away...
Post by thanksdad on Oct 20th, 2007, 3:40pm
so, I was afraid to read any replies to my last post because I was sure I sounded crazy. Imagine that, most of you are just as crazy. Seems I am right at home.

I quit everything after another trip to another doctor. Seems I am wasting $ on the wackos. Decided I would umm... try Yoga! Much to my despair I have been up all night and cant seem to do much other than cry today. So I decided I would keep taking the topomax and well the imitrex shots are worthless. (although my insurance seems to be the only one decent enough to pay for them.) I had 6 pain free days about a month ago or something. The last doctor gave me a shot of......dilaudid (no emergency or hospital ever please). hence my need to never see a doctor again, I had no idea what it was but I if your doc ever breaks out with a needle full of this run as fast as you can. No wonder I needed a labotomy in my last post.  Like I said, been up all night so don't mind my grammer. Feeling more and more like family here.

Take care all. I will continue to pretend that I dont feel like punching myself in the head today... six months now I think.

Title: Re: still dancing the night away...
Post by DennisM1045 on Oct 20th, 2007, 6:57pm
[smiley=hug.gif]

Welcome back.  What took ya so long  ;;D

I'm so sorry your cycle hasn't lightened up yet.  You certainly are in good company around here though.  It seems to be high season for episodics (me included).

I see you're on Dopymax now.  What else have you tried?  Sorry but I don't remember  ;)  Have you tried to abort with O2 yet?  Works great for me most of the time.

I'm stunned that Imitrex injections don't work for you.  I've never had one fail me yet.  I'm sorry if you are one of the few they don't work for.  How many times have you tried them?  I'm left feeling like crap for hours after taking but the HA is gone and that's all I'm really worried about :-/

Narcotics and CH do not mix well.  I see you learned that the hard way.  What was that Doc thinking anyway?  

Well, I hope you catch that elusive break soon.  PFDAN to ya...

-Dennis-

Title: Re: still dancing the night away...
Post by phil_h on Oct 20th, 2007, 8:34pm
  Sorry the pain continues......... icepacks,O2,prednisone,red bulls,trazadone to sleep,wellbutrin AM,cold showers and guided imageries. Wish I could advise you on some better solutions..trazadone helps me sleep more than 3 1/2 a night.......I ice down all shadows.....O2 and red bull to abort.......cold showers as needed...... I walk alot between hits.....................    There are alot of rxs that many people swear by.... Don't give up.... we have no choices but to seek the reduction of intensity and frequency of the hits...........  some times in the trial and error phase of rxs , worse comes before better...........keep seeking until the right meds stick ..... I'm with you in a bad phase right now......With a competent MD,this site and positive attitude..... you will get better......... I wish you pfnad's and that you find them quyickly.........  phil h

Title: Re: still dancing the night away...
Post by sandie99 on Oct 22nd, 2007, 4:52am
Welcome back. :)

And if the rest of us sound crazy, it's just the crazy pain. I hope that you'll find relief soon! :)

Do you pratice yoga regularly? I ask, because I do it occasionally and pilates regularly. Sure, they don't do anything to the pain, but help me otherwise.

Hugs & PF days,
Sanna

Title: Re: still dancing the night away...
Post by thanksdad on Oct 22nd, 2007, 12:57pm
Hi again, looks like a couple of near pf days now...well yesterday and so far today. The cafergot did it (thanks barb). Funny though its like my right eye speaks to me all day long. Just little sparks warning me that at any moment I could be on the tightrope again. I am trying to keep a little better track of my diet and other habits.

Smoking has suddenly become very icky to me. I think its the topamax because they just smell and taste miserable. A good thing for sure. I have tried to quit so many times but it just triggered my ch.

No, sandie I am not doing yoga. I do like pilates and I was more of a cardio & strength girl. That kind of exertion starts my ch so I have become miserable and just afraid to tackle anything. Now...getting into my jeans has become the real workout...lmao.

Well, take care. Gotta work now cause I missed a lot last week  :-*

Title: Re: still dancing the night away...
Post by phil_h on Oct 22nd, 2007, 6:06pm
  Shelia , I'm glad you're feeling less pain....a well deserved break...... I pray for you too.....thanks    phil h

Title: Re: still dancing the night away...
Post by Lonnie on Oct 23rd, 2007, 4:56am
I hope these are over for you. My series started August 15 I think. Still hanging in. Isn't it nice to have some where to go where people actually understand what the hell is going on...

Have a pain free day,
Lonnie

Title: Re: still dancing the night away...
Post by BarbaraD on Oct 23rd, 2007, 6:28am

on 10/22/07 at 12:57:21, thanksdad wrote:
Hi again, looks like a couple of near pf days now...well yesterday and so far today. The cafergot did it (thanks barb). Funny though its like my right eye speaks to me all day long. Just little sparks warning me that at any moment I could be on the tightrope again. I am trying to keep a little better track of my diet and other habits.



Sheila,

Those sould like "ice pick" pains and are about "half"  :D normal. Keep the Red Bull with you at work.. (and the cafergot). Chug-a-lug a can of Red Bull at the first sign of a head ache - if that don't stop it -- TAKE THE CAFERGOT - don't wait till it gets to a 10 -- take it at about a 6-7 - don't go thru any pain you don't have to. Let's get this cycle stopped!

The topamax has one "good" side effect --it will cause weight loss in most cases (I never bitched about that one)  ;).

After a few pain free days and some rest the exhaustion will receed and you'll be back to your old fighting self again.

Oh and another thing -- NEVER ever think you sound CRAZY on this board -- we're all perfectly "SANE" here - we just hurt! We don't have to apologize for how we sound when we're hurting. I don't think, in all my years here (with the exception of a troll or two) anyone has ever been told they are crazy for posting when in pain (except in jest and that was to cheer them up). So you just post whatever you feel and know we're here for "support" not put-downs. We've all been right where you are (and a lot of us are there now).

Hugs BD



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