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        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> Can anyone help me?
        
(Message started by: Yvette35 on Jan 26^th, 2005, 10:58am)

Title: Can anyone help me?
Post by Yvette35 on Jan 26^th, 2005, 10:58am

This is my first post. Im having a really horrible day, on a three day cycle of waking up each and every morning with a horrible unbearable headache. Been diagnosed with both clusters and migraines. All new to me, they are getting worse it feels like and no one seems to listen at the doctors. I went to the headache center and they seem less compassionate than anyone!!! I feel anxious, depressed and can't seem to bear the pain at all anymore. And if I don't make it to work soon, I will lose yet another job. And I love this one!! Any advice. Thanks for listening.
Tabitha

Title: Re: Can anyone help me?
Post by nani on Jan 26^th, 2005, 11:23am

Hi Tabitha...welcome and I'm sorry you're here. If you want info and advice you are in the right place. We have all felt the way you feel at one time or another. Look around the site here and at the OUCH site (link to the left). You will find info on medications. getting the help you need and coping. Print out some info and take it with you to your next appointment. I beleive that the OUCH site has a printout you can take to your employer as well. We're here to offer support and understanding. Good luck and pain free wishes to you....nani

Title: Re: Can anyone help me?
Post by Margi on Jan 26^th, 2005, 11:29am

Tabitha, what meds are you on? Do you use anything for an abortive? Oxygen and imitrex are very popular for this purpose and verapamil and lithium combined, make a good preventative plan.
Please tell us a little more so that we can give you some of our experience as to how we all cope with this curse. Sadly, no cure yet, but it is possible to function and continue employment. We're here to help you figure out how to do that.

Title: Re: Can anyone help me?
Post by athome on Jan 26^th, 2005, 12:10pm

Tabitha
That point of "I can't take this anymore" is familiar to most of us. First of all know that you can get thru this and that there are others out hear that feel your pain. I recently went to one of those wonderful Neurologist that did nothing but make me feel more helpless than what I already felt but I will tell you that he did one good thing (because I requested it) and that is give me an Rx for oxygen. Read as much info as possible on all the stuff that all of us have tried to fight this beast off. The o2 has helped me alot as well as taking melatonin but remember that you have to find what is going to work for you since everyones case is different. Do not get discouraged and try to find some thing that will prevent or abort the beast.
Send me a message if you must - you will get thru this!!

Title: Re: Can anyone help me?
Post by Kris_in_SJ on Jan 26^th, 2005, 8:24pm

Hi Tabitha,

My heart goes out to you!

You say you've been diagnosed with both clusters and migraines? Is this a new diagnosis, or something you've known for awhile?

The more we know about you and what treatments you're receiving, the more we might be able to help.

Can you tell us a little bit more?

Hugs,

Kris

Title: Re: Can anyone help me?
Post by Yvette35 on Jan 27^th, 2005, 10:30am

Oh I woke up this morning, in horrible pain, came to check my email and i had all of these wonderful, supportive posts. <snif> Truly, you all can't know how much it means to me. I feel so very isolated and alone right now. And that is not doing a good number on my head as well. I feel as though this has taken me from an outgoing, quick witted, workaholic, to a paranoid idiot sitting in a corner in the darkest room I can find praying for the phone not to ring!!!!! I truly seem to withdraw for a bit, and then can't stand the pain, start pacing and look for anyone who can tell me its going to go away soon.

Meds I have tried that didn't work. Topamax: Caused me to have a seizure, my first and only! Imitrex, amerge, frova, zomig, midrin, maxalt, atenolol. And probably a few more I just can't remember now.

Currently on Depakote (which is making me feel like a zombi) Verapimil, Oxygen, and swapping between demerol and fentanyl lozenges for pain, only I try not to use them, as they treat me like a drug addict if I need a refill. So I save them until I am absolutely insane and then try one, only by then, it does'nt seem enough to totally kill the pain, just makes it bearable.

I have suffered with migraines for years, which seem like nothing compared to these. Only in the past year have they progressively turned into these daily headaches with several comings and goings throughout the day and pain intensities varying from I can't take it to someone please put my scalp back on! LOL! I am trying to keep my sense of humour. Today is better than yesterday, Thank you all for being here!!!! You can't know what it means. I have no support system whatsoever!!!

((((((((((((HUGS))))))))))
Tabitha

Title: Re: Can anyone help me?
Post by sandie99 on Jan 27^th, 2005, 10:38am

[smiley=hug.gif]
Tabitha,
warm welcome to the CH family... I am so sorry that you have to suffer from CH. I don't wish it to anyone.

Are you suffering from both CH and migraines on the same time? I ask, because I suffer from both, too, but not on the same time. They have followed each other during a same day more than once, though.

And most of all, don't worry. Depression is something most of us here have tackled with/tackle right now. CH does that. During attack the whole world seems a dark place with no way out. When you feel like that, let us know! Someone is always here, 24/7.

I do hope that you have some medications to help you to deal with your headaches. You can find a lot information here.

Wishing you pain free days & nights,
Sandie

Title: Re: Can anyone help me?
Post by Yvette35 on Jan 27^th, 2005, 10:43am

Hey Sandi,

No they are not both at the same time, seems that I have days when I can't tell which part of my head hurts because it is so very sore from hurting for days that I can't distinguish the difference. Typically, if its a migraine it comes on in the middle of the day, and when I get in from work, I do a treatment and it goes away. The clusters don't go away. I wake with those, and they seem to just vary in intensity throughout the day. The depression is terrible. I can't help but feel as though the depakote seems to be making me feel worse. Just very lethargic and slurrish for lack of a better term. Anyone had a bad experience with Depakote?

Title: Re: Can anyone help me?
Post by miapet on Jan 27^th, 2005, 11:13am

Hey Tabitha . . .
Sorry you're getting hit so hard. . . and a double dipper too (migraine and CH)How is the o2 working for you? It needs to be high flow and not with canulas . . . . . . .oh, and an fyi on the depakote. . it acts on the frontal lobe (designed for the frontal lobe) . . .if it's beign prescribed for CH . . the hypothalmus isn't in the frontal lobe, so it doesn't surprise me to not find many (any) success posts for it . . . makes me wonder why docs write that script to begin with?
*positive light and energy*
miapet

Title: Re: Can anyone help me?
Post by myfreaknhead on Jan 27^th, 2005, 11:15am

on 01/27/05 at 10:43:32, Yvette35 wrote:

The depression is terrible. I can't help but feel as though the depakote seems to be making me feel worse. Just very lethargic and slurrish for lack of a better term. Anyone had a bad experience with Depakote?

Hi Tabitha,

I'm pretty new here, too. This is a great place to be, especially when you're scraping the bottom of the coping-barrell. Come here for help, and try to remember, this, too, shall pass.

I am also having a horrible experience with Depakote. I've been on it for quite some time, and although it does appear that's it's kept the monsters away, the side-effects are nearly unbearable. So I hear you! I can't sleep at night, and all I want to do during the day is eat donuts in between naps. I've gained weight, my hair is falling out, I feel disconnected and, I don't know...dizzy? (Like my eyes jump out of my face and zoom off into the opposite direction my head is going.) It's quite disturbing.

But reaching for the biggest knife to jam into the side of my face while I'm screaming under scalding water in the kitchen sink is far more disturbing, so I'm hanging in there with the meds.

Take good care of yourself.
~Teri

Title: Re: Can anyone help me?
Post by ArCane on Jan 27^th, 2005, 11:23am

Sorry that you have to be here but glad you joined us. This place is a well of information. All I can say is read read read and become informed. I cant tell you how many times this site has helped me. From what people tell me Depakote doesnt work well for clusters. I got prescribed it for my next cycle and will try it for myself the next time I get hit. Everyone is different, and different things work for different people. PF vibes heading your way.

Best Wishes,
ArC

Title: Re: Can anyone help me?
Post by Yvette35 on Jan 27^th, 2005, 11:55am

I do only have the canules now, but heard I have to have the mask, I am in a tiny town, so they had to order one for me, its due in today. I do feel terrible on the depakote, as though sitting in a stupering stare for all day is somehow better than the pain. Sad thing is, that it is, the pain is unbearable. However, it hasn't stopped the episodes in frequency or intensity, so I can't help but wonder if its worth paying for at all. The verapimil I can't seem to tell a difference either way, a bit slowed down but not lethargic. I have only been on the depakote for two weeks, so I dunno how much better or worse it will get. The oxygen does seem to be relaxing and make things bearable, though I am not sure how. It comforts me when its time. I am not one to lie in bed, so all of this laying in bed is killing my back and hips, etc.. Trying to be up today, and get some things done around the house in between the painful episodes, though it doesn't ever go away, it does seem to be less intense at some times than others. This is the fourth day of it, How long can this go on??? Thanks for writing.

Title: Re: Can anyone help me?
Post by Kris_in_SJ on Jan 27^th, 2005, 8:41pm

Hi Tabitha,

My heart hurts for you. It must be especially hard not having a support system available to you. I'd simply be at a total loss without my husband and daughter.

How high is your Verapamil? I've never found it to work as a prevent below 480mg/day. When you talk of Imitrex, is it the pills, nasal spray or injectibles? Only the injects work for me.

Sorry for all the questions - just want to help if possible. I've never suffered from migraines - am an episodic CHA sufferer.

Definitely get the non-rebreather mask and O2 with capacity for at least 10-12 L/min. Cannulas are useless. There's great info at the left about this.

So sorry you're suffering - keep posting and learning. Also, if you are at all interested in alternative treatments, you might want to visit clusterbusters.com.

Hugs,

Kris

Title: Re: Can anyone help me?
Post by Diamondhead on Jan 27^th, 2005, 9:29pm

Yvette,
I am sorry that you are in the family, but glad you wrote. I have suffered with Clusters for about 31 years now. I am in a cycle now, but it's been at least 9 years since i have had the glowing redhot icepick being jammed through my right eye. It now just feels like if I pop my right eye out, it will all pour out. Lots of thumping, but no icepick feeling. I am new to this board, I wish we had something like this around in the early 70's. I can tell you that I've been through the mill with meds, bellergal space tabs, (sic), gynergen, sansert, cafergot, ergotamine, thorizine, and a zillion others i just can't seem to remember. I had 2 teeth pulled, saw a hypotist, an allergist, and a couple neurologist, who concluded that maybe it was all in my head. I don't know if I can say this here, but I'll go ahead; I found relief at the Diamond Headache Clinic in Chicago. I feel they saved my life. Because at the time I found them, I was abusing Demerol to an unsafe point. But after a 6(yes, that's right) 6 month cycle of the glowing hot icepick, it didn't matter anymore. Life just wasn't worth living that way. I encourage anyone who has the means, to give them a try. I was lucky, at the time I had good insurance. But now, if the icepick comes back, I don't know what I'll do, as I have no insurance now. But I am following the diet, and doing the best I can for now. The best thing about the Clinic is they treat you WITHOUT narcotics, and the chance to finally see someone, in the flesh, that at the end of an attack, was curled up in a corner, just like me. Cause up till that point, no one had heard too much about Clusters. Please feel free Yvette, to ask any question you might have, although I have been icepick free for about 9 years now, I might be out of the current loop. But I have walked in your shoes. Be well. DH

Title: Re: Can anyone help me?
Post by Diamondhead on Jan 27^th, 2005, 9:42pm

Oh, I forgot that some Doctors toyed with the Idea of cutting the Trigemenal nerve in my face. sort of a permanet Bell's Palsy.

Title: Re: Can anyone help me?
Post by the_old_man on Jan 27^th, 2005, 10:00pm

Hi Tabitha

Sorry you're becoming one of us. You're right about this place. Post once here and you'll get a load of instant replies that will build you up, help you out, and let you know you are not alone. Some of us can't take any meds so have to fight the beast bare-handed. The downside is that the pain is intense without meds. The upside is that there are no side effects. Either way...with or without meds...they always go away. CH is a painful and temporary condition. For some the emphasis is on painful, but for most the emphasis is on temporary. It WILL end. This affliction did not come to stay, it came to pass. Once each episode is over, you will come to appreciate those pain-free times more fully, and the little things in life that most people take for granted become much more precious to a CHer. Fight like hell in times of pain, and enjoy those pain-free times. Be strong. We're here when you need us. For me, after 12 weeks of 3 hits every night, I've had 16 days of glorious relief. Life is good.

The Old Man

Title: Re: Can anyone help me?
Post by BMoneeTheMoneeMan on Jan 27^th, 2005, 10:41pm

Yvette, hang in there, dont take painkillers, and get O2 and Imitrex. Your doc will probably have to prescribe other forms of that first, but when you have tried them and they fail, you need to insist that you get Imitrex shots in the vial, not the statdose.
It has helped me a lot, a whole lot. Although I still get CHs, I have meds to fight them, and they work.
I think that almost everyone here will say that Imitrex helps them greatly. Maybe you should try it 2 more times??
PF wishes.
BMonee