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        New Message Board Archives >> 2004 Posts >> I'm at my wit's end!
        
(Message started by: nani on Oct 25^th, 2004, 10:34pm)

Title: I'm at my wit's end!
Post by nani on Oct 25^th, 2004, 10:34pm

I am going crazy, even feeling suicidal... can't indulge that tho'- two kids are depending on me. I'm in week 10th week of a horrible cycle. I think my verapamil and lithium need to be increased. I've been getting hit harder and much more often for the last 3 days. I just finished my 9th k9 hit today! One k8 happened on the interstate. I turned the a/c on full blast and got as close to it as I could until I could get off. I'm afraid to go to sleep. I rarely get hit during the night, but HATE that feeling. Waking up in agony is the worst. I haven't been able to fill my scrip for O2...my health ins expires this month and i won't have more until Jan. Money's kinda tight. Not sure why I'm posting - maybe just to bitch...thanks for listening.

Title: Re: I'm at my wit's end!
Post by cschick on Oct 25^th, 2004, 10:36pm

you have my phone # if you want to talk! I will listen if you wanna gripe!

Love ya girlie!!

Karen

Title: Re: I'm at my wit's end!
Post by alleyoop on Oct 25^th, 2004, 11:01pm

I don't know how much lithium and verap you are taking, but increasing the dosage may very well do the trick. I must include the usual disclaimer- see your doctor first. If you can do that before your insurance expires, that would be the thing to do. Especially with the lithium, which needs to be monitored.

Having said all that, I can only relate how those two drugs worked for me. My neuro started me out on 300mg lithium which he slowly raised to 900mg SR. After I had been on the lithium for about a year, he started me out on 240mg verapamil when my activity started ramping up again. I eventually went up to 720mg SR, and eventually that too quit working. At that point (900mg lithium, 720mg verap), my neuro wanted to up me to 960mg verap. Since I was already getting swelling in my feet and ankles, I never increased. Instead I tried the alternative therapy. That is another story!

What seemed to help me out the most was the verap. Every time I started getting hit hard, I wound up increasing my verap dosage which would actually give me some PF time. The only trouble with me was that inevitably I eventually would start getting hit again, and then be faced with upping my dosages. It was this realization along with all the side effects from the meds, that finally led me to try the alternative therapy.

Hope this helps in some small way Nani, and hope you get relief soon.

............alley :-/

Title: Re: I'm at my wit's end!
Post by vig on Oct 25^th, 2004, 11:02pm

Keep on fighting Nani,
Mooshie needs you now.

Title: Re: I'm at my wit's end!
Post by Opus on Oct 25^th, 2004, 11:33pm

Nani,
Tried to call you, will try again, Please let us know if you are ok.

Opus/Paul

Title: Re: I'm at my wit's end!
Post by nani on Oct 26^th, 2004, 12:00am

I'm as okay as I can be Paul... :-/ Thanks everyone...I'm gonna call my neuro tomorrow and then get my ass movin' looking into the alternatives I've heard about. I'm just draggin' my ass around lately, barely doing what I absolutely have to do. I'm a little concerned because a great deal of what I have to do involves driving kids around. The face in the a/c worked pretty good today, hopefully I won't have to use it. I've also started scoping out fire stations on my regular carpool routes, if I have to I'll pull in and ask for O2. I feel like I've been run over by an 18 wheeler. I know I have no choice but to hang in ... I think I'm feeling sorry for myself. Being a chronic makes me feel like I'm carrying an extra load of weights (and God knows, I already carry arount a lot) so getting hit HARD just takes away any fortitude I may have. Thanks everybody-love you :-*

Title: Re: I'm at my wit's end!
Post by warrior on Oct 26^th, 2004, 1:24am

I am so sorry for you and your pain. I am going through the same thing. Haven't had any for almost a year and now they are started up again as strong as ever. My dr. has me on 900mg. lithium. Maybe that would help to increase it. I have had ch for the last 9 years and am really beginning tired of them taking over my life... Take care. :)

Title: Re: I'm at my wit's end!
Post by AussieBrian on Oct 26^th, 2004, 3:09am

Nani,

It's spring-time where I live and I've just bottled up a heap of sunshine.

I'm sending it direct by Bunyip Express.

Hang in there, mate.

AussieBrian.

Title: Re: I'm at my wit's end!
Post by becky8 on Oct 26^th, 2004, 10:03am

Nani,
Honey, hold on!! I can totally relate, I am chronic and have a daughter too that I have to ride around and I just want to be with her and sometimes it just breaks my heart when I am having a bad day. Just keep telling your children how much you love them and they sometimes have to be in charge of things in the household( it makes my daughter feel important) cause I usually do everything for her and the family. I hope you can find the right combo of meds ( I worry all the time) is this day going to be bad one? Please don't, we all care and can relate so lean on us for those bad days. Hang in there, sweets [smiley=hug.gif] [smiley=hug.gif]

Title: Re: I'm at my wit's end!
Post by Valerie on Oct 26^th, 2004, 11:28am

Nine k9's in one day?? You poor thing, I wish I could say or do something to make it go away. Hopefully the worst is over and it will start to get better very soon. We're here for you, I know you are always here for us.

Hang in there, your family needs you :)

BIG HUGS,

Valerie

Title: Re: I'm at my wit's end!
Post by Carl_D on Oct 26^th, 2004, 12:02pm

Sorry your having such a rough go of it. I don't think there is a clusterhead alive that hasn't thought of suicide at one point or another. The pain and infraction on your life is enough to do that. Hang in there. It will end, and you're not in this alone. You have everyone here to lean on.

Peace & hugs,
Carl D

Title: Re: I'm at my wit's end!
Post by ArCane on Oct 26^th, 2004, 1:23pm

Feel free to bitch anytime nani ;;D. Thats what we are here for. Im sorry your getting hit so hard. I pray you find releif. [smiley=hug.gif] and PF vibes heading your way. Hang in there.

Allen

Title: Re: I'm at my wit's end! UPDATE
Post by nani on Oct 26^th, 2004, 6:51pm

Hi family... I woke up with a K5 shadow and really thought maybe this would be the day my cycle would be over (delusional, I think). Anyway, took the kids to school and started to get hit on the way back. Stopped at the fire station to get O2. When the paramedic took my BP it was 170/100. He said I should go to the hospital since the clusters had changed sides, my BP was so high and I had a history of a burst brain aneurysm. I asked him to check my BP again when the hit was over...about 20 minutes, so I wouldn't waste a trip. It was 165/100. So I reluctantly let him call an ambulance and rode in to the hospital. I got hit every 20 minutes with K7-9's. I even had a full blown headbanger. They CAT scanned me and no tumors or aneurysms (phew!) what I did have was a severe sinus infection on the side I'm getting hit on. He said the pressure alone was enough to trigger such bad CHs. Got 2 shots of morphine (didn't help the pain, but I really didn't care ;). Got scrips for a sh**load of sinus meds and antibiotics and see an ENT doc tomorrow for draining [smiley=huh.gif] that sounds kinda scary, but it can't be worse than these %#@$% CHs. The doc also doubled my verapamil. I see my neuro again in about 2 weeks. Thanks for all the love and care and kind words. :-* I'm hangin' in there...

Title: Re: I'm at my wit's end!
Post by ShariRae on Oct 26^th, 2004, 9:09pm

Atta girl nani.. you did what you had to do & took control by going to the fire hall..Now things should start moving a bit quicker for you in getting some relief..Heres hoping you are on the road to feeling better..
Huggs
Shari

Title: Re: I'm at my wit's end!
Post by Charlie on Oct 26^th, 2004, 9:47pm

Rats. I know what you're going through. I've been terrified to get back to sleep too. About all I can come up with is to repost the technique that worked for me. I swear that it does:

I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
I hope this technique is helpful and I wish you the best of luck

Charlie

Title: Re: I'm at my wit's end!
Post by Bec on Oct 27^th, 2004, 12:02am

((((( Nani )))))