ok so I spent 4.5 hrs in the hospital last night because of my TN. They spent that time pumping me full of narcotics IV to turn around and tell me that narcotics don’t normally work -umm duhhh- I am still in agony. they would not up my tegrotol because it would put it in side affect levels, so they put me on 100mg of Gabapentin 3 times a day along with my 200mg of Tegretol twice a day They sent me home with a 1mg tablet of Adavan-still in agony- finally slept until Monday- at 4pm -only up to take pills, by 7 pm and I was exhausted but not in so much pain. It is now Tuesday and I am so much pain but it is kinda of dulled because I am sitting zombie, I can’t explain it. Both sides of my face have a tingling sensation to them other then the pain in my cheek and eye on my left side. I hate this. The doctors at emerg can’t do anything. What do I do the next time I have to go to the ER I am sure that it may happen again between now and when I finally get to see the neurologist at the beginning of Feb. Sorry I am rambling I just hurt, am numb and tired all at once. I give up …
I can understand, I have never gone to the emergency department. Fainted with the pain of TN. my doctor gave me morphine for when it was really bad. I had a MVD in 2007 lost my hearing and balance, but the pain went away for 2 years. Don’t want another operation for fear of what it might do to me. Think my age is against me now. Some days I don’t know how to cope, thank goodness my husband is good. Mine aways seems worse in the evening. I do feel like a zombie, and my memory fails me through the tablets. Had MRI scan last Saturday, not seeing my neurologist again until April. Don’t think the doctors know what to do for us. Hope your pain has receded now Margaret.
hi my pain has receeded to manageable at the moment. I was placed on a new medication. Thanks for your response back. I am sorry that you didn't have to out come you wanted and need from your surgery.
Margaret Gladys Mills said:
I can understand, I have never gone to the emergency department. Fainted with the pain of TN. my doctor gave me morphine for when it was really bad. I had a MVD in 2007 lost my hearing and balance, but the pain went away for 2 years. Don't want another operation for fear of what it might do to me. Think my age is against me now. Some days I don't know how to cope, thank goodness my husband is good. Mine aways seems worse in the evening. I do feel like a zombie, and my memory fails me through the tablets. Had MRI scan last Saturday, not seeing my neurologist again until April. Don't think the doctors know what to do for us. Hope your pain has receded now Margaret.
Hi Gloria,
Yeah the ER doctor had no idea what he was doing, and I have not the experience to be able to tell him what meds might work. I will keep the med in mind for if there is a next time. :)
Thanks :)
Gloria E. said:
Hi Barb,
I'm sorry you had such a bad time at the ER. I was in the ER just last Friday night with wonderful results. They gave me two rounds of IV Dilaudid and something for nausea. This did the trick and seems to be the only drug that controls my flare-ups. I went home and slept for about 24 hours, only getting up to feed the cats and dogs.
Did the ER neurologist order this treatment for you or was it a regular ER doctor that's not terribly familiar with TN? I'm such a frequent flyer at the ER they have it down to a science. I hope you can ask them to use Dilaudid next time you have to go. Typical stupidity when you were told "narcotics don't normally work"...grrrrrr!!! If they could only feel the pain we feel, they'd be singing a different tune!!!
((( HUGS )))
Gloria
Oh, Barb, what an ordeal. I wonder what narcotics they gave you in the E.R.
I am sorry that you are in agony and feel like a zombie. I just wanted to write to tell you that I feel deep sympathy for what you are experiencing. There are many afternoons and evenings, when I have pain spikes and tinker with the idea of going to the E.R. I may have to do that this month, as my narcotic pain medications are running low, because they are the only thing that work for me. I have tried almost all of the non-narcotic stuff too. The pain specialist I see is reluctant to up my dosage, as the head of the practice believes I am inoperable and wants to be conservative as to the level of narcotics that he gives me, as my tolerance will only go up and up. But, my current dosage is failing. Once, I was maintained on 6 10 mg. Hydrocodone per day (bad for your liver), then switched to 4 Roxicodone IM per day. They only give approx. 2 hrs. of relief. But, reading your story makes me feel thankful that at least something works sometimes for me.
Ativan totally zombified me too. . . . .it just made me feel nothing, and sort of tingly.
For some reason, like you, after sleeping for awhile, the pain abates somewhat. I have read that this is typical. But, the relief also typically doesn't last long.
Don't give up. I am wondering if you can get a referral to a pain clinic, or if you would even be open to this option. I just hate to see anyone suffer so. Perhaps your Neurologist could refer you. If narcotics to not help, many pain clinics provide many more options, too many to list.
Best of luck to you.
I see that your pic is of an orange tabby, I just adopted one from the humane shelter. There are a lot of cat people on this site, I've noticed!
Hang in there, they don't call it the "worst pain known to man" for nothing. We are the troopers all looking for our own personal miracle. I know some who have found it. Don't you give up.
Hugs,
Stef
Gloria,
I have heard of one TN patient who is diagnosed with Trigeminal Neuropathy and gets pain control with Dilaudid. I remember when I was 9, and my Grandfather had colon cancer, it was the only thing that brought him relief.
If it works, and E.R. docs give it to to TN or ATN patients, I wonder why it is so rarely prescribed as a maintenance med. Huh?
Hugs,
Stef
Barb Shakespeare said:
Hi Gloria,Yeah the ER doctor had no idea what he was doing, and I have not the experience to be able to tell him what meds might work. I will keep the med in mind for if there is a next time. :)
Thanks :)
Gloria E. said:Hi Barb,
I'm sorry you had such a bad time at the ER. I was in the ER just last Friday night with wonderful results. They gave me two rounds of IV Dilaudid and something for nausea. This did the trick and seems to be the only drug that controls my flare-ups. I went home and slept for about 24 hours, only getting up to feed the cats and dogs.
Did the ER neurologist order this treatment for you or was it a regular ER doctor that's not terribly familiar with TN? I'm such a frequent flyer at the ER they have it down to a science. I hope you can ask them to use Dilaudid next time you have to go. Typical stupidity when you were told "narcotics don't normally work"...grrrrrr!!! If they could only feel the pain we feel, they'd be singing a different tune!!!
((( HUGS )))
Gloria
Hi, Margaret.
I am sorry to hear that you are having such an awful time. I, like you, have a good man to stand by me through this. It is a Godsend. I am wondering how well the Morphine worked for you, at what dosage and for how long.
I hear of so many failed MVDs', I am afraid it will make things worse too. . . .my pain is also worse at night, and I am a little better in the early mornings. I wonder if you are ever pain free when you wake up.
It doesn't sound, as articulate as you are, that you are a zombie. But, that is just opinion. You know your own body/mind best.
Yes, I don't think docs know what to do much, either. I am to see an Orofacial Pain Specialist soon. I hope she knows something about what to do! I will let everybody here know if she does.
Hang in there. Best wishes as always.
Stef
Margaret Gladys Mills said:
I can understand, I have never gone to the emergency department. Fainted with the pain of TN. my doctor gave me morphine for when it was really bad. I had a MVD in 2007 lost my hearing and balance, but the pain went away for 2 years. Don't want another operation for fear of what it might do to me. Think my age is against me now. Some days I don't know how to cope, thank goodness my husband is good. Mine aways seems worse in the evening. I do feel like a zombie, and my memory fails me through the tablets. Had MRI scan last Saturday, not seeing my neurologist again until April. Don't think the doctors know what to do for us. Hope your pain has receded now Margaret.
hey Stef, thanks for your reply. Yeah my ER trip was a waste of time. They wouldn't even tell me what they were giving me. I just know that they gave me IV gravol which I might add would normally knock me flat on my a** but it didn't even make me sleepy. The doctor had no idea what to give me and was just trying different things, then after 4.5 hrs gave up. He sent me home on Gaba along with my Tegrtol, and a 1mg adavan to help me sleep that night. (and it did).
Sleep is the best thing for this (or so I have been told) There are times when I wake up from the pain but not often. It is just getting to sleep. When I wake up I get maybe 5 mins until it get hit by the pain. At the moment I am in agony and have to keep stopping writting this. But I don't think I will ever go back to the ER.
Stef said:
Oh, Barb, what an ordeal. I wonder what narcotics they gave you in the E.R.
I am sorry that you are in agony and feel like a zombie. I just wanted to write to tell you that I feel deep sympathy for what you are experiencing. There are many afternoons and evenings, when I have pain spikes and tinker with the idea of going to the E.R. I may have to do that this month, as my narcotic pain medications are running low, because they are the only thing that work for me. I have tried almost all of the non-narcotic stuff too. The pain specialist I see is reluctant to up my dosage, as the head of the practice believes I am inoperable and wants to be conservative as to the level of narcotics that he gives me, as my tolerance will only go up and up. But, my current dosage is failing. Once, I was maintained on 6 10 mg. Hydrocodone per day (bad for your liver), then switched to 4 Roxicodone IM per day. They only give approx. 2 hrs. of relief. But, reading your story makes me feel thankful that at least something works sometimes for me.
Ativan totally zombified me too. . . . .it just made me feel nothing, and sort of tingly.
For some reason, like you, after sleeping for awhile, the pain abates somewhat. I have read that this is typical. But, the relief also typically doesn't last long.
Don't give up. I am wondering if you can get a referral to a pain clinic, or if you would even be open to this option. I just hate to see anyone suffer so. Perhaps your Neurologist could refer you. If narcotics to not help, many pain clinics provide many more options, too many to list.
Best of luck to you.
I see that your pic is of an orange tabby, I just adopted one from the humane shelter. There are a lot of cat people on this site, I've noticed!
Hang in there, they don't call it the "worst pain known to man" for nothing. We are the troopers all looking for our own personal miracle. I know some who have found it. Don't you give up.
Hugs,
Stef