Author |
Topic: This has got to stop! (Read 459 times) |
|
Mattrf
New Board Hall of Famer
Thank god for my wife and kids who keep me alive.
 
Gender: 
Posts: 817
|
 |
This has got to stop!
« on: Nov 14th, 2006, 12:38pm » |
 Quote  Modify
|
Month 11 and now for some reason my SUNCT has decided to get worse not better, I have gone from a constant 2 – 3 pain level on pain meds to a 5 in the past two days, my eye feels like it is on fire and I have a nail going through my left cheek bone.
I probable took 20 pain pills yesterday witch would give my doctor a coronary since they want me to only take 8 and no more then 12 a day but I could not help it and today is starting out just as bad. I try to stay at 8 – 12 but it was just to painful yesterday and needed more to get through the day at work. I recently sent an email to my bosses telling them that I didn’t think I could keep up the act of I am fine anymore and to expect me not to be smiling and acting happy like I have been for the last 11 months, it is just easier as you know to put up an act then to deal with all the questions and the idiotic remedies that they come up with, guess the email was just in time. I am just so glad I work for doctors and that they understand and can appreciate the fact that I work so hard to do my job while I am in so much pain. Last time this stupid thing lasted 9 months and I am very afraid that I have become chronic and since SUNCT is constant pain it is a very scary thing to think about. I cant remember the last time I was PF, my youngest daughter made me a get well card the other day, she said it was for my headaches, very sweet but it brakes my hart that she sees me in pain all the dam time and that I cant play with her when she wants, I try but just cant most of the time and it tears me up to see the look in her face when I say daddy cant play right now.
Matt
|
|
 IP Logged |
There is no stronger a person then one who can deal with brain pain and still function.
|
|
|
nani
CH.com Alumnus
New Board Hall of Famer
Got kudzu?
Gender: 
Posts: 7953
|
|
Re: This has got to stop!
« Reply #1 on: Nov 14th, 2006, 1:39pm » |
Quote Modify
|
Yikes, Matt. That sounds awful.
I don't know anything about SUNCT, but I have to ask...
20 pain pills? Isn't it entirely possible that they are making things worse?
pf wishes, nani
|
|
IP Logged |
Others may come and go, but MY power is MINE.
|
|
|
Linda_Howell
CH.com Alumnus
New Board Hall of Famer
Hearing is one thing. Listening is another.
 
Gender:
Posts: 6721
|
|
Re: This has got to stop!
« Reply #2 on: Nov 14th, 2006, 1:59pm » |
Quote Modify
|
Quote:| I probable took 20 pain pills yesterday witch would give my doctor a coronary since they want me to only take 8 and no more then 12 a day |
|
Holy-something batman...that gave ME a Coronary and I'm not your Dr. Besides the fact that they could be making things worse for you, pain wise...after 11 months of this and you are going to have one hell of ANOTHER problem entirely.
I don't know what the answer is for the SUNCT either because I know so little about it, but since the pain meds aren't cutting it and they are ramping up...It seems logical to assume they are doing you no good in all departments.
Gonna go read up on SUNCT right now. 
P.S. Do not go cold turkey with the pain-meds. Ween yourself off them slowly.
|
| « Last Edit: Nov 14th, 2006, 2:01pm by Linda_Howell » |
IP Logged |
Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
|
|
|
Langa
CH.com Alumnus
New Board Hall of Famer
So many donuts, such little time...
Gender:
Posts: 4179
|
|
Re: This has got to stop!
« Reply #3 on: Nov 14th, 2006, 2:03pm » |
Quote Modify
|
Quote:| Gonna go read up on SUNCT right now. |
|
Me, too... 
Matt, I sure hope the pain eases up. I, for one, cannot go near painkillers when in cycle. The rebounds are awful.
Keep us posted!
Langa
|
|
IP Logged |
When you saw only one set of footprints, it was then that I carried you.
|
|
|
roy21302
CH.com Alumnus
New Board Old Timer
I love YaBB 1G - SP1!
Gender:
Posts: 348
|
|
Re: This has got to stop!
« Reply #4 on: Nov 14th, 2006, 2:33pm » |
Quote Modify
|
Matt,
I too will have to read up on SUNCT, but in the mean time please take all the vibes that i could possibly send to you, I do know how your feeling regarding your daughter, I had the same thing with mine years ago and it tears you apart. However she a Mum herself now and says that seeing me ill has taught her to care more and boy she a good Mum. I will be reading up and thinking about you mate hoping you get some peace soon and I'll be thinking of your family too
Cheers Roy 
|
|
IP Logged |
|
|
|
BlueMeanie
CH.com Alumnus
New Board Hall of Famer
Gender:
Posts: 1178
|
|
Re: This has got to stop!
« Reply #5 on: Nov 14th, 2006, 2:59pm » |
Quote Modify
|
Is there not some sort of DHE administered hospital stay or something that will stop your SUNCT headaches ? I agree with the other posts. That many meds may be making it worse.
I hope you find something soon and get some PF time Matt.
|
|
IP Logged |
|
|
|
alchemy
CH.com Alumnus
New Board Hall of Famer
get out of my head
Gender:
Posts: 1639
|
|
Re: This has got to stop!
« Reply #6 on: Nov 14th, 2006, 3:26pm » |
Quote Modify
|
Matt, i hope you can find some pf time you need it.
|
|
IP Logged |
|
|
|
Linda_Howell
CH.com Alumnus
New Board Hall of Famer
Hearing is one thing. Listening is another.
Gender:
Posts: 6721
|
|
Re: This has got to stop!
« Reply #7 on: Nov 14th, 2006, 4:08pm » |
Quote Modify
|
This is what I found, and of course this is for us who want to understand. I know that this info has probably been posted on another board and in another thread, but I don't have the patience to try to find out where.
Quote:What is SUNCT Headache?
SUNCT-Short-lasting, Unilateral, Neuralgiform headache attacks with Conjunctival injection and Tearing-is a rare form of headache that is most common in men after age 50. The disorder is marked by bursts of moderate to severe burning, stabbing, or throbbing pain, usually on one side of the head and around the eye or temple. Attacks typically occur in daytime hours and last from 5 seconds to 4 minutes per episode. Patients generally have five to six attacks per hour.
Autonomic nervous system responses include watery eyes, reddish or bloodshot eyes caused by dilation of blood vessels (conjunctival injection), nasal congestion, runny nose, sweaty forehead, swelling of the eyelids, and increased pressure within the eye on the affected side of head. Systolic blood pressure may rise during the attacks. Movement of the neck may trigger these headaches. SUNCT may be a form of trigeminal neuralgia and is considered one of the trigeminal autonomic cephalgias, or TACs.
Is there any treatment?
These headaches are generally non-responsive to usual treatment for other short-lasting headaches. Corticosteroids and the anti-epileptic drugs gabapentin, lamotrigine, and carbamazepine may help relieve some symptoms in some patients. Studies have shown that injections of glycerol to block the facial nerves that carry pain may provide immediate relief, but the headaches recurred in about 40 percent of patients studied.
What is the prognosis?
There is no cure for these headaches. The disorder is not fatal but can cause considerable discomfort.
What
|
|
|
|
IP Logged |
Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
|
|
|
Tara Ann
CH.com Alumnus
New Board Hall of Famer
It's always darkest before the dawn.
Gender:
Posts: 2459
|
|
Re: This has got to stop!
« Reply #8 on: Nov 14th, 2006, 4:23pm » |
Quote Modify
|
Hey Matt so sorry to hear about your pain, esp the emotional pain that your child see's your pain. I'll never forget when my daughter wanted an icepack to hold over her eye like her mommy.....broke my heart, but now years later she (and my son) have so much sensitivity to others in pain, they can be very compassionate for a 5&6 yr old. So don't get tooo down about that, it's a good lesson to learn and not many of todays kids learn compassion
|
|
IP Logged |
http://www.myspace.com/taraann77
 
|
|
|
Mattrf
New Board Hall of Famer
Thank god for my wife and kids who keep me alive.
Gender:
Posts: 817
|
|
Re: This has got to stop!
« Reply #9 on: Nov 14th, 2006, 4:33pm » |
Quote Modify
|
Thanks for all the vibes guys, I really needed them today.
Yes I do think I may have a hell of a time when it stops and I have to stop the pain meds but so far they do help, without them I would go nuts in a hell of a hurry. I’ve not had any rebounds HA’s from the pain meds but have not been off them long enough to get one, I normally only and I use that term lightly, about 8 – 10 a day still a hell of a lot but they do knock the HA down to a tolerable level normally down to a 2 or so it has just been these past two days that it seems determined to kick my ass.
My wife just had the pharmacist print up all the scripts I have had in the last year, it is going to read like a horror novel! I hate to think about all the meds I have been on, I have taken everything you guys have tried due to them thinking this was CH at first and now have been on just about every anticonvulsive med and others that I don’t even know what they are for. I am feeling a little better then I was when I posted this so maybe the vibes are working.
Matt
|
|
IP Logged |
There is no stronger a person then one who can deal with brain pain and still function.
|
|
|
tanner
CH.com Alumnus
New Board Hall of Famer
Adopt a POW/MIA I have
Gender:
Posts: 2449
|
|
Re: This has got to stop!
« Reply #10 on: Nov 14th, 2006, 5:22pm » |
Quote Modify
|
Matt, I have kept from posting to this thread because like many others (I think) I just don't know enough about sunct to do any more than try to give you an attitude boost.
Well guess what, after reading and reading I still don't know enough, so here is the boost 
I know it doesn't fit but at least it should take you a minute or so to try and figure out why I am sending this particular graphic.
Just wanted to let you know that I am concerned and doing what little I can to try and help. The whole pain med thing freaks me out because I am having a similar experience with my Docs, and I know that the meds can make things worse (depending I suppose on which ones you are being told to use that many of. My Doc is actually pissed at me because I am refusing to fill scripts for some meds that he feels someone in as much pain as I claim would not do. In my case it is Oxycontin, Methadone, and Depacote patches. I tried to explain that even if these drugs helped take the edge off a CH hit that the possibility of an accidental overdose happening to someone like me with impaired memory is just too risky, but of course HE is the expert.
Hang tough and be very certain that there are people out here that care about you!
My best vibes are coming your way and will continue until we get this figured out. Tim
|
|
IP Logged |
I AM THE MASTER OF MY MIND, MY BODY, AND MY EMOTIONS...
it's just my head that sucks...http://www.centerforlit.com/
|
|
|
Mattrf
New Board Hall of Famer
Thank god for my wife and kids who keep me alive.
Gender:
Posts: 817
|
|
Re: This has got to stop!
« Reply #11 on: Nov 14th, 2006, 6:09pm » |
Quote Modify
|
Thanks Tanner, the pic made me laugh.
I hear you on those meds, my wife had a disk go out and was on the oxi and methadone and had to spend a week in the hospital for detox, but she did meat the most interesting people, NOT! I went to see her each night and the people there where all drug attics she was the only one that was there to get off a doctor prescribed dependency and she still had to go to all the dam meetings with the druggies she said it was very degrading to be there voluntarily and to be treated the same as all the court ordered people. She tried to get out of going to the meetings but they said didn’t matter how she got there she had to participate, what a crock! She was also not allowed to have her cell phone no laptop or any other electronics it was just like being in jail.
|
|
IP Logged |
There is no stronger a person then one who can deal with brain pain and still function.
|
|
|
Linda_Howell
CH.com Alumnus
New Board Hall of Famer
Hearing is one thing. Listening is another.
Gender:
Posts: 6721
|
|
Re: This has got to stop!
« Reply #12 on: Nov 14th, 2006, 6:15pm » |
Quote Modify
|
Matt, that is why I said do not go cold turkey but instead wean yourself off of them slowly, so that you DON'T have to go through what your wife did.
We're right here Matt.. 
|
|
IP Logged |
Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
|
|
|
Charlie
CH.com Alumnus
New Board Hall of Famer
Happy to be here
  
Gender:
Posts: 14968
|
|
Re: This has got to stop!
« Reply #13 on: Nov 14th, 2006, 6:57pm » |
Quote Modify
|
Damn.
So sorry you are taking such a beating. 
On the pain pills, all I can do is hope that my idea that you know how to take good care of yourself is accurate....I think it is.
I had no idea what this other horror is. Sheeeit.
It ain't fair.
Lots of vibes Matt.
Charlie
|
|
IP Logged |
There is nothing more satisfying than being shot at without result---Winston Churchill
|
|
|
George_J
CH.com Alumnus
New Board Hall of Famer
White-Breasted Nuthatch
Gender:
Posts: 4222
|
|
Re: This has got to stop!
« Reply #14 on: Nov 14th, 2006, 7:07pm » |
Quote Modify
|
Matt, along with most of the others, I can't offer much beyond my best wishes--I don't know diddly about SUNCT. It sounds like a whole different monster, though. You're really helping to educate the rest of us here. Sounds like we could use it.
Hang in there, and stay strong.
Best,
George
|
|
IP Logged |
Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
|
|
|
Mattrf
New Board Hall of Famer
Thank god for my wife and kids who keep me alive.
Gender:
Posts: 817
|
|
Re: This has got to stop!
« Reply #15 on: Nov 15th, 2006, 11:06am » |
Quote Modify
|
I actually call SUNCT CH’s evil cousin, it runs in cycles just like CH and effects one side of the face around the eye as well. The main difference beside not responding to any CH medications is that you have a constant HA that only changes in intensity and the hits instead of lasting 45 minutes like CH they only last seconds but can happen anywhere from a few times a day to my worst of about 80 in a day. I can’t imagine what a full CH hit is like, I have seen the video clip and can honestly say I would never want to go through that, but after 11 months of SUNCT I would kill for some PF time, the HA is just relentless and tares me down day by day and it brakes my wife’s hart to see me in constant pain. CH and SUNCT may be different but they are both evil and are out to destroy our lives if they can. My hart goes out to every one of you living in this hell that we have been dumped in and wish us all PF time, no one deserves to live in such a hell as we do.
Matt
|
|
IP Logged |
There is no stronger a person then one who can deal with brain pain and still function.
|
|
|
roy21302
CH.com Alumnus
New Board Old Timer
I love YaBB 1G - SP1!
Gender:
Posts: 348
|
|
Re: This has got to stop!
« Reply #16 on: Nov 15th, 2006, 11:12am » |
Quote Modify
|
Matt,
I read up all I can find, still go no useful advice, but remember we will be thinking of you take, bring on the PF times Please-------------- Cheers Roy 
|
|
IP Logged |
|
|
|
Charlotte
CH.com Alumnus
New Board Hall of Famer
I love YaBB 1G - SP1!
Gender:
Posts: 1932
|
|
Re: This has got to stop!
« Reply #17 on: Nov 17th, 2006, 8:45am » |
Quote Modify
|
I call sunct ch's bstard half sister.
I hven't been able to find any info other than a description and a list of meds that ar tried for it. However, what little feedback we have on the board, the meds listed didn't work or cause side effects that aren't worth it.
Good luck, mattrf
Charlotte
|
| « Last Edit: Nov 17th, 2006, 8:49am by Charlotte » |
IP Logged |
|
|
|
E-Double
CH.com Alumnus
New Board Hall of Famer
Are we ourselves?
Gender:
Posts: 6458
|
|
Re: This has got to stop!
« Reply #18 on: Nov 17th, 2006, 8:54am » |
Quote Modify
|
Matt I am sorry you are in pain and sorry if I am going to rehash this....
From everything I read and of course I am not a doctor, I do not recall SUNCT having a constant pain like you describe.
The bursts/spikes seem right on the money but the constant does not.
I understand you have been through the ringer with some of the top docs and have been on so many damn meds but have you tried indomethacin???
This is the one NSAID that many TACs other than CH respond to and if you haven't at least tried it you are doing yourself a diservice.
In addition if your docs haven't suggested a trial it is a shame.
If it is SUNCT then a heartfelt hug and prayers for relief but it is indeed worth a try after all that you have been through.
Regards,
Eric
|
|
IP Logged |
I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss