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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> So I'm not crazy and alone in this? 
        
(Message started by: CynthiaB on Nov 17th, 2006, 10:09pm)
Title: So I'm not crazy and alone in this?
Post by CynthiaB on Nov 17th, 2006, 10:09pm
It took a complete breakdown in my doctor's office this morning, but I finally have some hope! It's a strange feeling, since I have been suicidal for several days. Tuesdays nights headaches were so frequent, so intense, that I was praying I had an aneurysm that had ruptured and would kill me. At least it would be over.

I experienced an 8 week bout in March-April that was diagnosed as 'accomodative spasms' and treated with glasses. Prescription needed only for the right eye, and the smallest prescription the optometrist had ever seen. You know I don't wear them, because I don't have a vision problem when my eyeball isn't swollen, watering, and on the verge of exploding.

This Sept. it started again, but the attacks have been getting worse in intensity and frequency. I dread the night. It doesn't help that I work nights, either. I think my coworkers hate me now. I'm not a nice person when the aliens are trying to escape through my orbit.

I've been treated for shingles on my eardrum, which I really did have. Next we treated the sinus infection (CT showed that). Now the cluster headache symptoms are all that's left. My doctor jumped right on it when I stopped crying and could talk about my symptoms. We ruled out glaucoma at the Eye doc today, and I see the neurologist next week.

I'm already hating my insurance company. They don't want to pay for Topamax. Our primo headache man in town isn't on my insurance. I told her I didn't care. I would take out a second mortgage on my house for the hope of one night of painless existence.

I'm so grateful that I found this site. I'm a critical care nurse, and I'm not comfortable talking about my own suffering. I feel weak and self-absorbed. I see death and devastation on a daily basis, so who am I to think that my headache is worthy of anyone's time and effort?

To see my own experience, my own thoughts, expressed by others, has changed my perspective. I usually spend the time in between bouts pondering painless ways to end my life. I'm not going to do that tonight. I know that the first attack will happen soon, but I can face it now. It has a name, a treatment. I know now that I am not crazy, and I am not alone.
Title: Re: So I'm not crazy and alone in this?
Post by AussieBrian on Nov 17th, 2006, 10:15pm
You're not crazy, even if it is all in your head, and you're certainly no longer alone.  Welcome home.
Title: Re: So I'm not crazy and alone in this?
Post by jon019 on Nov 17th, 2006, 11:13pm

on 11/17/06 at 22:09:49, CynthiaB wrote:
Hi,

I'm so grateful that I found this site. I'm a critical care nurse, and I'm not comfortable talking about my own suffering. I feel weak and self-absorbed. I see death and devastation on a daily basis, so who am I to think that my headache is worthy of anyone's time and effort?

You are Cynthia, you are home, and you certainly are worthy. You no more deserve this than anyone here or anywhere, and you have found people who know, who care, and who will be there for you.

Climb on board the boxcar, this train only moves fast when someone needs help.

To see my own experience, my own thoughts, expressed by others, has changed my perspective.

Did mine too, SEE, it's better already!

I usually spend the time in between bouts pondering painless ways to end my life. I'm not going to do that tonight.

First of all, take the "tonight" out of that last sentence. You and we will feel WAY better.

I know that the first attack will happen soon, but I can face it now. It has a name, a treatment. I know now that I am not crazy, and I am not alone.

Nope, you are not crazy or alone. It's called CH, or the beast, or whatever, and we all know it, however disguised. Now read, read, read everything here. And oh, O2, O2, O2. Cheap, fast, efficient, easy, minimal side effects, AND you're at a hospital-AVAILABLE!


Best,

Jon
Title: Re: So I'm not crazy and alone in this?
Post by alienspacebabe on Nov 17th, 2006, 11:43pm
You're not crazy. and you're not alone. Welcome to your new home! Here you will find people who understand, having been there already (or are currently there).

Welcome!

Lizzie
Title: Re: So I'm not crazy and alone in this?
Post by georgej on Nov 18th, 2006, 12:44am
Welcome home.

Try oxygen, and try it now.  See the link at the left for "oxygen info"--properly administered, oxygen has proven to be a powerful, safe, and effective abortive for many of us.  10 to 15 lpm with a non-rebreather mask in many cases will abort an attack within minutes.  If this makes an immediate difference, then we need to get you lined out further with other treatment options available to you.  Others with more knowledge than I have will certainly be along to help you with this.  

I hate to sound aggressive, but we will not permit you to give up.  

There is the equivalent of centuries of experience with CH at CH.com.  Not many of us are doctors, but as we like to say, we are expert patients.  

No, you're not alone.  There are thousands of us here, who know exactly what you're going through.  It's a continual astonishment to me every day that I am no longer alone with this.  DJ (the administrator of this site) created a wonderful thing when he built CH.com, and I will never cease to be grateful and humbled by what he has done.  

Along with all the rest of us at CH.com, I look forward to getting to know you.

Best wishes,

George

P.S.--I see that you are new to CH.  It's very difficult, I know--I have not forgotten what it was like to get hit for the first times, even though I have been an episodic clusterhead for forty years.  Some here have been chronic for decades.  Don't worry--you'll come to grips with this.  Clusterheads are the toughest people on the planet.   ;)
Title: Re: So I'm not crazy and alone in this?
Post by BB on Nov 18th, 2006, 4:49am

Dear Cynthia,

My husband has CH and this is his first cycle so we know how difficult it is when the beast appears for the first time.

The pain is so different to anything else we have ever experienced in life that we are lost as to how to cope with it. There is really nothing in a normal person's reservoir of experience that can be used readily to combat this ailment. This is new and so we need new weapons to fight it with.

Here is where you will find the most comprehensive range of weapons for your battles and I can guarantee you, through our own experience and others, that the beast can be tamed and you will be the victor. All you need is a stead fast refusal to give up or give in.

My husband had been through it all too. I had seen him in tear, in fear, in terrible pain, in despair ..... asking to die. I had seen him having major panic attacks. I had also seen him spending weeks being depressed and wanting to give up. Yet now 3 months down the track he is mastering the oxygen techniques and can abort most hits without needing another medication.

Barely 4 weeks ago he was staying in bed most of the day, couldnt do much but lying there dreading the next hit yet right know he is putting up Christmas decoration around the house  :) . When a hit comes he would run to the oxygen tank, sit down, have a few huffs and maybe a Zyprexa tablet, some ice on his neck and eye, then he could go back to whatever he was doing again. Its not much difference to taking a tea break really. Of course there will still be some days when things are more difficult and one needs to struggle a bit more .  But then we all have bad days and good days, CH or not.

Try to take one step at the time and knowing that it will pass, that things will get better and that soon you can look back and see how strong you have grown.

Take some time reading the posts, there are sooo much fantastic informations here, some can be tried straight away like ice and Melatonin and water treatments, others can be stored up your sleeves to be discussed with your doctor and neurologist on your next visit.

Vent away whatever bad feelings you have, we can take it all for you, then ask as many questions as you like. Whatever it is, someone here is bound to have tried/experienced it and will be able to share their knowledge.

Take care, hang tough, pull yourself up, TOGETHER WE FIGHT!

Hugs

Annette
Title: Re: So I'm not crazy and alone in this?
Post by Tak on Nov 18th, 2006, 10:02am

on 11/17/06 at 22:09:49, CynthiaB wrote:
It took a complete breakdown in my doctor's office this morning, but I finally have some hope! It's a strange feeling, since I have been suicidal for several days. Tuesdays nights headaches were so frequent, so intense, that I was praying I had an aneurysm that had ruptured and would kill me. At least it would be over.

I have certainly been there, too!

I experienced an 8 week bout in March-April that was diagnosed as 'accomodative spasms' and treated with glasses. Prescription needed only for the right eye, and the smallest prescription the optometrist had ever seen. You know I don't wear them, because I don't have a vision problem when my eyeball isn't swollen, watering, and on the verge of exploding.

When I was maybe six years old they thought this about my CH's. Didn't do a thing for me.

This Sept. it started again, but the attacks have been getting worse in intensity and frequency. I dread the night. It doesn't help that I work nights, either. I think my coworkers hate me now. I'm not a nice person when the aliens are trying to escape through my orbit.

I've been treated for shingles on my eardrum, which I really did have. Next we treated the sinus infection (CT showed that). Now the cluster headache symptoms are all that's left. My doctor jumped right on it when I stopped crying and could talk about my symptoms. We ruled out glaucoma at the Eye doc today, and I see the neurologist next week.

I'm already hating my insurance company. They don't want to pay for Topamax. Our primo headache man in town isn't on my insurance. I told her I didn't care. I would take out a second mortgage on my house for the hope of one night of painless existence.

I'm so grateful that I found this site. I'm a critical care nurse, and I'm not comfortable talking about my own suffering. I feel weak and self-absorbed. I see death and devastation on a daily basis, so who am I to think that my headache is worthy of anyone's time and effort?

I have never been one to share my weaknesses either. Mainly because everyone trivialized my HA's as normal HA's, so I just stopped telling people and suffered in silence. I remember a friend once said to me, "It's just a damn headache. Pop a couple Tylenol and let's go." I told him, "I wish like hell you could experience one of my headaches for just a couple of minutes. If you would could last for three minutes with one of these, I'll get on my knees and kiss your feet." That shut him up pretty quick.

To see my own experience, my own thoughts, expressed by others, has changed my perspective. I usually spend the time in between bouts pondering painless ways to end my life. I'm not going to do that tonight. I know that the first attack will happen soon, but I can face it now. It has a name, a treatment. I know now that I am not crazy, and I am not alone.

You are not alone and that is something I realized a few years back when I was first diagnosed. There is a complete support system here. Although I wish it were under better circumstances, welcome to the fold. Maybe the more people we get together like this, the more the "powers that be" will get to working on a cure for us faster.

[b][/b]
Title: Re: So I'm not crazy and alone in this?
Post by thebbz on Nov 18th, 2006, 12:07pm
http://www.patientadvocate.org/help.php
http://www.brightok.net/~mnjday/chtherapy.pdf
all the best
jb
Not crazy not alone.
Title: Re: So I'm not crazy and alone in this?
Post by roy21302 on Nov 18th, 2006, 12:16pm
As everybody has said, stick around read and you'll find loads of help here, ask anything you want someones always here to help, hope you get some PF time soon
                                                            Cheer Roy :)


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