Tic douloureux??

[keefer51]

When i lived in Nashville for two years i would have a pain in my head that words can't describe. I would lie on the floor with a cold can of beer over my right eye. This pain would always seem to hurt around the same time everynight. Then a couple of times it happened at work. Both of those times i was taken to the hospital. I got a few tests and they couldn't tell me what it was. It went away for about 8 years. Last week this pain came back. Now instead of beer i use a bag of frozen corn. The pain also happens at all times of the day and night. It came on last night strong enough to make a grown man cry. I was up till three AM. It went away and i was able to sleep for a couple of hours. When i awoke i didn't have it. I was so spent i could hardly walk. I could only stand the pain when it came back for a short time. I called my sister who came and took me to the hospital. It was one of the best hospital visits i have had in a long time. Once i got there i had a hot towel over my eye. The first nurse i saw took me back right away. After i laid down it was only minutes till i had a IV in and was having my BP checked. Most of the questions they new the answers to due to my frequent stays! Doctor came in and after a few tests told me i had Tic doulourux and I'm not even French! The whole time i spent there i was taken care of regularly. Anytime the pain came they gave me pain meds. I was there for only about 4 or 5 hours and was given two scripts which appear to be working. Has anyone else ever had this?

[goofynina]

Is it like a migraine?  Whatever it is, it sounds painful and i am sorry your experiencing that!!  Take care Keefer and Godspeed my friend 

[Sluff]

I get migraines all the time. I know how bad the pain can get and I'm sorry you experienced this. I have had pain so bad I swear if I had a gun I would have shot myself for real.

Anyways I'm glad they found the answer. 

[aharris2]

(Also known as trigeminal neuralgia) Pain meds do not touch it. Rolando takes Tegretol which has successfully blocked recurrences.

Rolando has it. It hit him between Christmas and New Years and also took us to the ER. It was not diagnosed there nor was it diagnosed by the PCP who just threw up her hands asking what she was supposed to do, after all, the hospital had already given him an Rx for pain meds.

It's almost becoming instinctive now - we went to see the nephrologist who recognized it, called his associate (and brother-in-law) the neurologist who asked a few questions (to eliminate something else called arteritis) and told the neph what to prescribe. The neurologist then saw Rolando practically immediately, even though he is booked for months in advance,  and has continued treating it with Tegretol (usually an antiseizure med, but also used for trigeminal neuralgia). Thank God, Rolando has not had to go through that level of pain again.

[keefer51]

In Nashville as well as here in Pennsylvania there were a couple of diagnoses. One of course was a migraine but when asked about whether the light bothered me and i said no they thought it may be a sinus head ache. Since they didn't think it was a migraine nothing was prescribed. For the sinus head ache they told me to take the wonder drug Tylenol. I call it that cause i can't help but wonder when is it gonna work for me!! Rolando buddy i am glad you don't have them anymore.

[Sara]

So what is it exactly?  Never heard of either name for it, but sounds incredibly painful, and I'm glad they treated you right at the hospital this time.

[tweetykiss]

Keefer, here is to getting well very soon.....I am so sorry you went through all this and I hope all your meds are working well.......our thoughts are with you.....

Here is a website that gives good reading material on the condition

http://www.emedicinehealth.com/tic_douloureux/article_em.htm

Yes, tegretol is also good for this......

[keefer51]

The pain meds Fentanyl and Gabapentin seem to work. However today was the first day on them. I started to have a weird twitch in both hands. I drop things i pick up with them. I hope tommorrow will be better.

[tubes]

Sorry to hear about that Keefer.  But I'm wondering if that may be the cause of my pain.  It's only happened 4 x's since March but my last episode was Monday.  It has only happened on dialysis toward the last hour or so.  Monday it hit the last 20 mins, it's right in the middle of my forehead.  I get nauseated and vomit then I sleep in my car for a few hours before I drive home.  When I'm having the pain I can't move my head becuz it intensifies the pain tremendiously.
I see my doc next Thursday so hopefully we'll figure it out then.  I'm definately going to mention "Tic douloureux" to him.

I hope the meds ur on continue to work for you.

later man,
Roberto

[lola]

keefy sorry to hear about the pain and i'm not even standing by you hehe hang in there 

[keefer51]

Lola my dear your never a pain! The Fentanyl helps and now i don't have any more twitch. I wouldn't wish this pain on anyone, even my exwives! Thanks for the info folks.

[keefer51]

Just a quick update on this french kissing disease!! I am having a bad "jones" coming off the Fentanyl. It has been five days now. The doc. has given me Vicodyn to help but i only take that if it is real bad. I do not have the pain in my head anymore. No more french kissing for me folks!

[tubes]

Glad to hear you are doing better Keefer.  My doc is FINALLY scheduling an appointment with a neurologist.  I haven't completed a dialysis treatment in over 2 weeks because of the headaches.  I hope this gets figured out soon, I don't think I can handle much more of this.

[angela515]

 tubes

[Black]

An exotic French disease?  That would be funny if it weren't so horribly painful.  Since recommended meds are the ones for nerve pain and anticonvulsants, perhaps Lyrica would be a good choice?  Lyrica may be so new that it is not in the on-line data on this disorder.

[keefer51]

Tubes old buddy i hope they find out what is wrong. I only had the pain once while on dialysis. A day or two after that i was in the hospital and found out what it was. I happy to say i am off the Fentanyl. I don't know if or when the pain may return. I hope you get some relief.

[Red from Canada]

I just saw a blurb on TV medical newscast about Fentanyl.  They have had deaths from improper usage!  They say it's 50 times more potent than morphine and needs to be carefully prescribed.  People have been accidentally overdosing, forgetting they have a patch on and maybe adding a second etc., so while it's very effective, be careful and use ONLY as prescribed.

[keefer51]

I haven't had a patch on for two weeks. I was on 50mg every 72 hours. After a couple of months my Dr. put me on 25mgs. every 72 hours. I remember taking off the last patch. In about 4 or 5 days i started to "jones" my body would tremble and i felt bad. She now has me on Vicodyn. I have only taken around three of those. I now feel a little better and am glad i am off the patch.

[tubes]

Tubes old buddy i hope they find out what is wrong. I only had the pain once while on dialysis. A day or two after that i was in the hospital and found out what it was. I happy to say i am off the Fentanyl. I don't know if or when the pain may return. I hope you get some relief.

I finally got some relief Keefer.  After my doc upping my dry weight so many times that I finally couldnt breathe any more....they decided maybe it was my high blood pressure.  Now I'm on four different blood pressure pills and I take 6 pills aday.  The blood pressure has gone down a bit and the headaches have stopped. No more throwing up on dialysis, getting off early then sleeping in my car for 3 hours.
Finally feel well enough I can go back to work.....Now I just need to find a job. 

[keefer51]

Tubes my friend i am so sorry for your health problems. I know one thing about the blood pressure meds. They DON'T help my sex life!