Author |
Topic: Almost giving up... (Read 310 times) |
|
helpless23
New Board Old Timer
Gender: 
Posts: 269
|
 |
Almost giving up...
« on: Dec 8th, 2006, 8:42am » |
 Quote  Modify
|
Hi all,
Sorry I haven't responded in a while here, or to PM's. Ken had surgery yesterday. He had 2 herniated discs in his neck that were compressing his spinal cord and his nerves as well causing his arms to go numb. The surgery went well thank God and he should be coming home today. He has a titanium plate to keep his spine steady and for support, apparently there was something wrong with his vertebrae as well. He's still in some pain but he's doing really well. He's a strong guy.
The beast came to visit last night, right on time (12:30-1:00) and on Wednesday night I fell to a panic watching and listening him almost destroy the bathroom, and himself. He told me that out of 30 some years, this was the worst one that he ever had. The doctor seems to think that the neck injury was contributing to the pain, Ken thinks so too because he said the pain in his neck while he was having it was unbearable. I had no imitrex left and of course, no one would help me, but I tried anyway. I didn't know what to do. I'm scared that he will get one while he's home with no preventative at all to stop it. I don't know how he will do it.
He was on Oxygen most of the day yesterday and I requested that he have it in his room as well, but the beast still came back, like I said -- it didn't miss a beat. Same time, same place. They had an Imitrex injection ready to go for him as soon as he felt it coming and thank GOD it worked like a charm and took it away. It's too bad that insurance will only give him 2 injections a month. I'm going to look into getting more though, they will approve it, we just need the damn doctor to call. The neuro he found in NYC sucks ass. What a jack off. He's going to get a call from me today. There are 2 wonderful HIGHLY CLUSTER HEADACHE educated doctors in NYC and IN OUR PLAN that I'm going to set him up with ASAP. They are both in NYC though. It doesn't matter how far we have to travel anyway -- but they 'get' it. That's my next resort.
So I just wanted to touch base and say "I'm sorry" for seeming like I was blowing things off, but I wasn't. I haven't had a second to myself between getting him and everyone ready for this surgery (including myself) and trying to figure out how to help him through is CH. I can't wait until this year is over. I can only PRAY and hope that 2007 will finally look up. It's been a real hellish 2 years for us and it's time for a break.
I keep saying I know how it goes "What doesn't kill you, makes you stronger" and "God never gives you more then you can handle". I just want to say if that is true, then I must be SUPERWOMAN in God's eyes with the strength of Hercules AND The Hulk put together. It's been a tough year.
Like I said, all I'm hoping for right now is that the beast stays away for at least a while. It's hard not knowing his cycle. Verapamil isn't working anymore. Tried Prednisone for 5 days, that sort of worked with shadows and the day he stopped they came back. He's on a stronger steroid (as per request by me) right now, but it still reared it's ugly head last night. Im' scared and nervous.
Thanks for all of your input. I will get back on as soon as I can.
Love to all that have helped me.
Toni
|
|
 IP Logged |
|
|
|
zwibbs/Scott
New Board Hall of Famer
Stay Strong !!!
Gender: 
Posts: 2206
|
|
Re: Almost giving up...
« Reply #1 on: Dec 8th, 2006, 8:48am » |
Quote Modify
|
Hi Toni. I'm from New York and my Neurologist is great ! He's located in the Bronx , and alot of his patients suffer from cluster headaches, so he really knows what he is talking about. I am going to be in the city for the weekend, but PM me and I'll give you all the information when I get back Sunday afternoon. Are you from the city itself, or the burbs ? I am in New Rochelle ( Westchester County).
|
|
IP Logged |
There's always light at the end of the Tunnel.
|
|
|
helpless23
New Board Old Timer
Gender:
Posts: 269
|
|
Re: Almost giving up...
« Reply #2 on: Dec 8th, 2006, 8:54am » |
Quote Modify
|
Hi Scott,
This guy that I was talking about is from the Bronx as well. I forget his name off the top of my head and I'm too tired to try and locate it, but I wonder if he is 1 in the same. He did a recent web study and interview on CH. He's a young guy with short dark hair and glasses. Maybe he's the same. My husband grew up in Manhattan (Chelsea) and I grew up in Brookly (Marine Park) but I moved when I was 11. He commutes there everyday now. Yesterday was the first time I have ever driven in the city -- alone -- in the dark. Talk about scary. I have to make the drive back with my kids, it should be interesting.
Thanks for your help. PM me because I'm a flit lately. Too much going on!
|
|
IP Logged |
|
|
|
minnie
New Board Hall of Famer
my greatest joys are my daughters April & Beth
 
Gender:
Posts: 1059
|
 |
Re: Almost giving up...
« Reply #3 on: Dec 8th, 2006, 9:12am » |
Quote Modify
|
Toni,
My heart is breaking as I read this. I am so sorry that the beast will not let go when he's already dealing with surgery.I too will be praying that the new year bring your whole family a lifetime of being painfree.I know the loss your family suffered will never go away but I hope the good memories are helping you through the grief.
You both are very strong.Just remember as imoprtant as it is to take care of ken and the family you are just as important.Never underestimate the power a a good soak in a bubble bath.Relaxing music and candlelight to relax you.treat yourself to what your soul and body need and you will have the strength to deal with what life is throwing your way.if you want I will I.M you my phone #.If you need a friend who knows a little of what your going through I'll be there.I have unlimited long distance so I can call you back.Just I.M me you can rant,cry,talk or whatever you need to do.
Hugs to you,Ken and the family,
Minnie
|
|
IP Logged |
Friends are Angels who lift us to our feet when our wings have trouble remembering how to fly
______________
You may only be one person to the world
but you may also be the world to one person.
|
|
|
athos
New Board Hall of Famer
Reality is for those who lack imagination!
 
Gender:
Posts: 770
|
|
Re: Almost giving up...
« Reply #4 on: Dec 8th, 2006, 10:08am » |
Quote Modify
|
Dear Toni,
I am sure that you don't know me but you might remember my husband Ken Olsen. He too had neck surgery in July of this year. It was his third!! Sounds like they have the same problems. Ken was also dealing with the beast as well as black out spells. He had so much head trauma I don't know how he functioned. We jokingly and lovingly called him Frankinstien because of all the staples and stitches he had on his head. anyway.... in May he was in a car accident where he lost the brakes of his grandfathers car and hit a tree head on. He was not wearing his seatbealt and hit the top of the car because the ground was at a downward incline. He broke two titainium screw clean off!! They told him if he had hais seatbelt on it would have killed him. Well as the next two and half months went on he had zero black outs and only 2 headaches that weren't even bad in comparrison to most he said. In mid July he had the surgery to repair the so called dammage.( I really think some of these headaches have to do with neck nerve injury) Almost immediately he was in excrusiating pain and full blown beast almost constantly. Black outs began and there it went!!. I was so sad to see this because for two months he actually played ball with the kids ran and jumped. It was so good to see it!! Because he was always in so much pain.
I really understand how helpless you feel and if you are like me sometimes you just want to scream and run!! Because all the ER doctors just think they are Drug freaks. Even Ken's Neck surgeon would not do anything for him for pain. he said "there's nothing more I can do" he wouldn't even see him!! What a @#@!!. I was so angry.
Our general doctor was the one that helped Ken with his pain. They alternated pain patch and others. The very sad thing is that when Ken used the pain patch, which he has used may times for the past year, his first patch in the new prescription OD'd him and he passed away in August. I don't tell you this for sympathy but for a caution. Please watch you husband very carefully with his meds after this surgery it can be very scarey to controll the pain but not too much!!
Please know my prayers are with you and your Ken! I can surely understand your pain and frustration!!
take care
Jody
|
|
IP Logged |
http://www.XdUP.com
Find Your Value For X
|
|
|
BB
CH.com Alumnus
New Board Newbie
I love YaBB 1G - SP1!
Posts: 0
|
|
Re: Almost giving up...
« Reply #5 on: Dec 8th, 2006, 10:33am » |
Quote Modify
|
Hi Toni
Sorry to hear that you and Ken are suffering so much.
I know that extra neck/muscular pain can make a cluster attack worse. Has he tried ice on the neck? That may help. Or maybe try hot water running on the neck in a shower. Some have found that to help too.
You said he is on strong steroid? Is that prednisone?
Apart from Imitrex and oxygen, he can try strong coffee and/or red bull to abort as well. Maybe even try zyprexa, its much cheaper than Trex.
Is Ken on any preventive ? Like verapamil or Lithium? They may be able to reduce the hits as well as the intensity.
If he get night hits then try melatonin also. Melatonin works quite well for a lot of people here.
Please take care of yourself. Put some time aside for yourself too. Its important that you keep yourself well in order to keep giving him the support.
Hugs and painfree wishes.
Annette
|
|
IP Logged |
|
|
|
Mattrf
New Board Hall of Famer
Thank god for my wife and kids who keep me alive.
Gender:
Posts: 817
|
|
Re: Almost giving up...
« Reply #6 on: Dec 8th, 2006, 10:50am » |
Quote Modify
|
Toni have you read the Imitrex tips on the left side yet?
I have not but people have said that there are tips in there on how to make a single dose into three, they say that it only takes about a third of an injection to put the beast at bay. That would give you three times the injections.
Just a thought.
Matt
|
|
IP Logged |
There is no stronger a person then one who can deal with brain pain and still function.
|
|
|
FramCire
CH.com Alumnus
New Board Hall of Famer
Life like a froward child must be humored a little
Gender:
Posts: 847
|
|
Re: Almost giving up...
« Reply #7 on: Dec 8th, 2006, 12:03pm » |
Quote Modify
|
I know your situation fairly well. My wife went through similar times. We have been married 8 years and she has been tothe ER with me 6 times plus had to deal with CH and neck surg.
I am impressed with you. My wife is an amazing woman to go through what she has, and you seem to have gone through similar times.
With the Imitrex, see if you can find a doctor with samples. I believe my primary care doctor and my headache specialist have imitrex samples.
Also explain your insurance problem to your doctor and see if they can get the amount bumped up. Even for migraines I thought the standard was 6 doses per month.
Good luck!
|
|
IP Logged |
You've overstayed your welcome since the day we met but it doesn't seem to matter to you. No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do
|
|
|
Woobie
CH.com Alumnus
New Board Hall of Famer
I luv you guys!!!!!!!!
Gender:
Posts: 3800
|
|
Re: Almost giving up...
« Reply #8 on: Dec 8th, 2006, 12:53pm » |
Quote Modify
|
Hey Toni
Chin up, sister!! You're going thru the same shit we all go thru - just all at once. Bless ya!
You're doing all you can, and that's all you can do. Lighten up on yourself. You're doin fine.
smooches
woobs 
|
|
IP Logged |
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss