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Topic: An Oldie but NewbieAM I IN HELL? (Read 267 times) |
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Leggs
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An Oldie but NewbieAM I IN HELL?
« on: Jun 21st, 2005, 9:28pm » |
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Been a member here since 2002, but I fade away when the clusters do. Do you still love me????
Like so many of us know, NO ONE BUT A CLUSTERHEAD GETS IT!!!
I just spent a long time writing a long letter, and the computer blipped it out, so here's the short version of my current hell. I was reading through some posts, and saw something that really hit home for me, when rickyshot said there is no way she would have made it without her faith in God, so true for me too.
I get clusters every July and February like clockwork, and I am absolutely terrified of the next group, since I was diagnosed with trigeminal neuralgia while in the middle of a cluster in February. I am just at a loss to even express what this means, to KNOW clusters are one of the most painful things known for us to endure, and READ about the SAME thing about trigeminal neuralgia. Why is this happening to me?
It's really terrifying me to think of getting the clusters with the TN in July. It doesn't HAVE to happen right? The only thing that sort of helps me sigh with relief is my internist referred me to Emory, and I should know when my appointment is by Friday. I never got a neuro here, and the guy I was sent to initially was an ASS, where's your pulling pants down emoticon when I need it, rickyshot? When I was telling him about when my issues started, what was different about now (since a car accident in November), He holds his hand up and real snotty, like I am a 5 year old or something "Don't tell me about any of THAT, what is going on NOW."
Anyway, I do know what I have, but when he was treating me with a seizure medicine, and I told him I could not function, I could not drive my car, I could not take my kids to school, they just totally blew me off when I told them I needed to try something different, biofeedback, ANYTHING.
No one can even imagine what kind of pain I am in, but I KNOW you guys/gals can.  . I know there is even a support board for TN, but it's usually in OLDER people, boy oh boy, aren't I lucky, to get it in my 40's, just like I got my shingles when I was 40. I am just blessed, eh?
I am going to keep in much closer tough with everyone with my July cluster "session" around the corner, and my trip to Emory coming up. I am really pissed I had to have about 10 xrays taken today, since the told me my insurance would not cover the MRI's when xrays hadn't been done first. Insurance stinks too...As July approaches, I may very well be in CH hell, but at least here I know I have company
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jcmquix
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Re: An Oldie but NewbieAM I IN HELL?
« Reply #1 on: Jun 21st, 2005, 9:55pm » |
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I just wanted to say hello, when you said that your CH comes in Feb & July, I know what you are talking about. I get mine almost the same as yours and like clock work when I am in cycle, mine come in Dec-Feb & June-Aug & again in Dec-Feb, they ramp up and ramp down through out those 3 months, but I also get random Ch's through this entire period. I wish I could go into Deep Freeze. When they hit..
I do not know much about the TN, heard a little about it , like 3yrs ago when I was told I had CH. I feel for anyone who has to go through any of this or anything similiar.
I have Faith in my God, I know each person does one way or another, as I said before here, "It takes all of us to Build a Village and Raise the Children". No one can really do it alone. All of the people here are a blessing to someone at sometime, I just wanted to be part of the support, cause just a week ago a few people here reached out to me, I just want to do the same.
PF Days to ALL !!!
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Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space. (burnt-toast)
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Leggs
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Re: An Oldie but NewbieAM I IN HELL?
« Reply #2 on: Jun 21st, 2005, 10:19pm » |
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yep, that's what the CH support is all about, there are no others like the people here. You know what is so crazy, to me, as a faithful, spiritual person, the people here are so Godlike, because they are not judgemental. Beside, no one ever said, "though shalt not use naughty words," and sometimes I feel like expressing anger in THAT way is a vehicle for our intense, insane out of our mind feelings during these hellacious headaches.
When I found this site back in 2002, it kept me from going WACKO, knowing all the insanity and intensity you feel is "normal" with respect to clusters.
TN is pain like MS, where the myelin around your nerves sort of wears away when facial/mouth nerves are over stimulated from something like a surgery. Well, I have had no surgery, so it is freaking me out. I found one reference saying it can be triggered by a head trauma. The thing that is totally scaring the crap out of me now, is I am having burning and tingling in my arms and legs, a sign my SIL had before she was diagnosed with MS. I have a first cousin with MS.
It was a great relief to have my internist listen to me, and not scoff at the fact that I thought the neurologist was inept, and agree that not trying anything but a seizure medicine was not appropriate. I also told the neuro, I needed something to take when it happened not something that had to build up to be effective, and then be gradually reduced. The pain with TN comes and goes, at least I can predict the clusters....but damn, it's scaring the crap out of me to have both.
This may sound stupid, but I hope I DO have both when I go up there, so they can be diagnosing when it's going on, you know?
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jcmquix
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Re: An Oldie but NewbieAM I IN HELL?
« Reply #3 on: Jun 22nd, 2005, 7:07am » |
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I know what you mean about the people here, they are the greatest poeple I have ever met in my life and a great support group. I have only been here a short time, but I mean they have their differences, but they are still there for each other.
I will be the first to admit, I go to Church, I am not a Holy Roller, I believe in God and I pray everynight that he would take this from not just Me, but Eveyone. I do not know why they still come, but they do. I use anything I can to rid myself if the BEAST at 2am in the morning, including beating my head against the wall & cursing &%&^%^%, but I do know what does not kill us, makes us stronger.
I understand what you say about not knowing being scary. After all, before I found this place, I thought I was going off the deep end. I even thought I had something moving around in my head. I was scared to say anything to anyone, I figured I would be put in the
NUT HOUSE (Sorry) but that was my thought.
I hope that things work out at the Dr, I really hope that you do not have anything else, but if you do, I hope the Dr can start working on it for you.
God Bless You & PF days to ALL !!! 
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Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space. (burnt-toast)
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don
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Re: An Oldie but NewbieAM I IN HELL?
« Reply #4 on: Jun 22nd, 2005, 8:34am » |
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Quote:| yep, that's what the CH support is all about |
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Yeah. You should try it sometime instead of fading away.
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Leggs
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Re: An Oldie but NewbieAM I IN HELL?
« Reply #5 on: Jun 22nd, 2005, 8:56am » |
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Yeah. You should try it sometime instead of fading away. >>That's exactly what I was thinking last night, when I am NOT having the problem, and I have half a brain, I need to stay around to support everyone else who is still in the middle of it to remind those who are not chronic, it will end, and those who ARE, someone understands.
When I dropped the last time, I had joined this weight loss support group, and it was too much to keep up with both places. I eat like total crap when I am having headaches. I think I am going to post something about that....I have become such a whale like I have never been in my life. BUT, when I was in that support group, and was telling them what I was going through with the headaches, I would get the famous "Oh yeah, I know how it is, I have migraines." I dropped when I had a major headache vent moment and no one replied. I really think some of them didn't reply, because what I say about how bad the headaches are and how I "act" they think I am nutty, over the top, not from this planet.
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seasonalboomer
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Re: An Oldie but NewbieAM I IN HELL?
« Reply #6 on: Jun 22nd, 2005, 9:03am » |
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oops, i'm sorry, I thought this WAS the interplanetary, over the top, nutjob support group.
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Leggs
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Re: An Oldie but NewbieAM I IN HELL?
« Reply #7 on: Jun 22nd, 2005, 9:15am » |
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oops, i'm sorry, I thought this WAS the interplanetary, over the top, nutjob support group>>Now that's funny, but TRUE!!! We can be over the top, nutjob space cadets and still supported!
I like that quote, if youthink hard enough, it will go away. When are your seasonal headaches? I may have one around the corner, it usually hits me February/July
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KMT
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Re: An Oldie but NewbieAM I IN HELL?
« Reply #8 on: Jun 24th, 2005, 12:28pm » |
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Welcome back unfortunatly. I am sorry that the beast is back.
Quote:| Been a member here since 2002, but I fade away when the clusters do. Do you still love me???? |
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There is always room for forgiveness. Stick around next time and share your experience with others. Plus you can let us know how you are doing even in those good times..................
Just wanted to introduce myself. PF wishes.......KIm
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aka...................................................... KimY
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Leggs
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Re: An Oldie but NewbieAM I IN HELL?
« Reply #9 on: Jun 24th, 2005, 3:54pm » |
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There is always room for forgiveness. Stick around next time and share your experience with others. Plus you can let us know how you are doing even in those good times..................
Just wanted to introduce myself. PF wishes.......KIm>>
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Thanks, Kim. Actually, the beast is currently in the dungeon, but July is when I expect it back like clockwork...Dealing with this other issue, TN is hell enough, and I can WELL remember what it was like back in February when I had BOTH at the same time.
LIke you said, I want to be here good and bad days to help those out and let them know someone KNOWS the pain, someone understand. Clusterheads are truly unique. When is a convention coming to Atlanta?????
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