Posted by Monique (22.214.171.124) on February 09, 2000 at 21:02:35:
I really don't know how to put this all into words and if it takes a few, please forgive my ramblings, but this is very important to both Greg and I to say this.
Considering our family history of this terrible affliction you would think there would be an extraordinary support system available to us. However there is not. Greg's fathers stopped abruptly at 53 and he has not had a reoccurance, he is 70 now. (lucky him!) He never shared his pain or asked or help in anyway from anyone in the family and suffered in quite agony alone. They prefer not to discuss that part of thier lives. His yonger brother is in Africa and has only just started and there is not much of a relationship there to begin with. Our son, has had two short minor (praise the Lord, sorry but I do!) bouts and of course we deal with that with love and support and compassion as well as obvious understanding. Bottom line, what we have found here in a room full of strangers has been more loving, more supportive, more expressive, more helpful, more,...shall I go on? than anywhere or from anyone we have met to date. It has helped to lift us out of this past pit to find the strength to go on for a while longer and for that we truly thank each and everyone of you from the bottom of our hearts, the depths of our souls and the very pit of this beast! When Greg walked back in the door with flowers and chocolate in hand and saw my tear stained face, his mouth fell open realizing what I must have thought, all I could say to him was "stupid man!" and throw my arms around him as the police car drove in....you can well imagine the rest! :) I read him some of the posts and emails, you made us cry again! "stupid people!" :)
The advice has been wonderful. As I type this he is going into his third hour of sleep. I gave him Gravol, never had tried that, and tylonol. Here's hoping it is enough of a break to give him some physical stregth he has lost about 10 pound in the past few days. Very, very tierd man! ;(
The advice about the oxegen too was great. We have done it but no one, not even the doc.s at the clinic told us anything about tight fitting masks, flow rate etc. He is willing to try it again, this thanks to all of you, he had had it with Doc's and is now willing to try again! YOUR MARVELOUS!
Here is some background info. as I said Greg's father, his yonger brother and our 17 year old son all have CH's. This is unusual and the only thing that makes any sense to our doctor (from the pain and headache clinic, nuro) is that they are all of similar build and personality traits ie: (keep in mind that this is from the nuro.) All are over 6' tall - all have chiseled features - all very muscular - all exibit obsesive compulsive traits. This was his conclusion after examination of family history and one very prominent annomoly (sic?)Greg has another brother inbetween himself and his yongest. He does not suffer from CH's. He is under 6', dark hair, brown eyes (the rest are all blond blue eyes) heavy set and very un obsesive compulsive tendancies, he does suffer from Asthma, none of the others do.
I dug out the info from the clinic where he spent three nights hooked up to monitors. Fortunately it was at the very peek and they got good readings from the very worst of the attacks. The duration is listed in two parts, "cover attack" and "sub-attack" The cover attack lasted 17 hours 43 min. but within the cover attack the sub attacks lasted 1 hour 12 min. to max. of 3 hours 9 min. This was followed by a note by the nuro. that the "remission period seems to be of such short durations that they are almost imperceptible other than by EEG and Blood pressure, resperation and heart rate. I believe that they are of a maximum of only 1 -2 1/2 min. during the peak cover attack. The imperceptibility of the remissions in his physical appearance may be due to the overal tension and residual muscle spasams due the length of the attack."
He has tried all the meds and some in combination. Unfortunately the only one to really work well was the imetrex injections which caused a mild heart attack so they are no longer viable.
Well, I am in a state of exhaustion and should have laid down too when he went to bed, but I really didn't think it was going to work so I was prepared for the next onslaught. I am going to go check out my MS support board now cause that is in full blown mode now thanks to todays histarics, so am going to go get some much needed advice and MS support.
Again you have all been just wonderful and I can't thank you enough. Greg would like to post something re his thoughts on suicide, having been so close he feels he would like to share this and what makes him hang on even when it seems impossible. This may take some time before he can put this together for obvious reasons!
Thanks, and here's hoping for a peaceful, pain free night for us all,
with much love and respect
Monique, for Greg and the kids, hell even the dog!
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