- having a real rough time right now. I have increased the Trilep to 450mg BID and take the Teg 200mg up to 4 times daily between as needed for breakthrough pain. I don't know if it is the stress of starting back to school and all of the demands put on us or the weather being so weird or just this getting worse, but I am starting to wake up at night hurting; this was my only time that when I went to sleep I would not feel any pain.
As you all know, the meds have me just loopy at times...I don't know; I don't want to sound like a whiny baby, but I also know you are the ONLY group that understands and I appreciate you more than you know!
If you are of a praying persuation, please put me on your prayer list and I will do the same...
I don't think you're whiny at all. You are on some really powerful meds. I am on Trileptal and it's kicking my butt. I also have breakthrough pain. For most people the pain does get worse, it's how it progresses. I haven't even been on teg yet. NOT looking forward to that. The prognosis on this disease sucks. Not to mention every side effect of the meds.
Can you take a teg right before you go to sleep? I'm on klonopin, which I take before I go to sleep.
I look forward to sleeping, if just for the relief of all pain, so I know what you mean about sleeping.
I wish there was some magic wand to take away your pain. I will put in my prayers and hope you have better days ahead! hang in there, you are stronger than you know.
if you are being whiny, then I’m an all-out train wreck! seriously, you don’t ever have to apologize to this group. we’re the folks who get it; who won’t ever think you’re making a big deal of nothing. we’re always here… and yes, I’ll swap prayer lists with you!
I love how the last reply said you never have to apologise here, you don’t, we all fully understand. Isn’t it wonderful how so many friends have reached out to you. It may not take away the pain but there is a warm glow just knowing people care. I can’t take away your pain but I wish I could. Hoping for better for you soon.
Hi, you are not whiny and don’t have to feel apologetic . Share with us your happiness and pain whenever you feel right. Sometimes there is breakthrough pain and you need more medicine , as well as support. I hope you get better soon. Sleep is very important to me and Clonazepam helps.
hey cris
I know exactly what you are going through right now!! You are in my thoughts and on my prayer list and we are commisserating and whinning together!!! You know what…it is ok to whine because this stinks and is true pain!!! Hang in there and know you are supported!! ;
Poor you! I am sorry. I imagine it is a combination of things. If you are feeling pain at night, you might not be getting into a deep enough sleep. I do pray, and I am praying right now for you. You're not a whiny baby. If we can't say something here, then I think we might blow up, literally, with the pressure of having to keep it all in!! Let us know what you find out. July was a bad month for me, and I am still struggling. For me, it was the flu and our triple digit heat. You know, though, how weather affects TN. Praying you get answers and your body settles down and behaves.
hi all, i got on this site when my mom got TN. Within a week, we realized that her pain was not bearable as her electric hits of pain all day just totally changed her life.
is this what you folks are dealing with? we went on the Johns Hopkins website, clicked on TN and up popped dr. Ben Carson's talk about how he can help TN pain. Dr. Carson's practice is 1/4 TN patients. He did a needle proceedure and the same day of the proceedure, my mom's pain was gone....after a month now, she is doing perfectly well. she is 80 and in good health.
i will tell you that her initial neurologist seemed to be on the wrong path to dealing with this terrible and life dibilitating pain. she put her on Lyrica....which did little to help and she could NOT stand the pain hits. i do not know what the neurologist was thinking...stringing her along on meds that did little if anything. the neurologist also said that any proceedure would not work, which is just wrong!!!
God bless you all to find a helpful solution to this terrible illness. i am sure there are other doctors in the country who may do proceedures to help this pain, but Dr. Carson, in Balitmore, MD is definitely reliable. i have total confidence in him.
Grace Ann, I don't have the electric shocks all day now that I am on Lyrica, though I still get them sometimes. I do, however, have the constant, duller heavy background pain constantly. I will keep this doctor's name in case we go back to Maryland to Hopkins. They diagnosed me originally with my autoimmune disease.
Cris, I will put you on my pray list and our TN family has a group for prayer requests which you can join. I too have difficulty sleeping due to the pain sometimes. My MD prescribed amitriptyline 10mg and I take 1 pill which helps me sleep. I know increased stress will increase your facial pain. What helps me is deep breathing exercises and meditation. Good luck with school. God bless you.
REALLY yuk!!! ...praying you are better and I thank you for your words of encouragement. It is hard to get an appointment with my neuro; it sometimes takes 2-3 days to return a phone call...I will mention these suggestions to him. I truly appreciate everyones comments and suggestions, but most of the prayers. I will certainly (and always do) remember you too.
booklass said:
Poor you! I am sorry. I imagine it is a combination of things. If you are feeling pain at night, you might not be getting into a deep enough sleep. I do pray, and I am praying right now for you. You're not a whiny baby. If we can't say something here, then I think we might blow up, literally, with the pressure of having to keep it all in!! Let us know what you find out. July was a bad month for me, and I am still struggling. For me, it was the flu and our triple digit heat. You know, though, how weather affects TN. Praying you get answers and your body settles down and behaves.
Hi, Grace Ann, I am on Lyrica and LamoTRIgine to manage my electric shocks and constant dull pain. It takes about two months before I see the effect. I had done away with the Clonazepam as my pain is under control and I have no problem going to sleep.