My pain is slowly and progressively getting worse. I am at my wits end. I just had a new MRI and see my neurologist Friday. I am not a candidate for MVD. I am on carbatrol, topamax, tegerol, and percecot. I feel at times I am losing it. I keep thinking I can’t take anymore. The pain is so bad. I keep thinking what if I just take more meds the pain might go away but then I might too. These thoughts scare me. I cry all the time. I can not get any peace. I know I need to go talk to someone. Has anyone else ever felt like this disease just takes over their life? I feel so lost.
Please ask your doctor/neuro about Tramadol or Klonopin.
Percocet is not going to cut it for our pain.
I can take 1/2 a tramadol and be functional. Mine is a 50mg tab. I say functional as I feel safe at home with the little kids alone.
The Klonopin was given to me when the botox was wearing off and kicking in again. It helped me sleep. But it wore off like a switch being flipped exactly 12 hours later. Thus the Tramadol during the day was added.
Those are my suggestions. I feel like if you can get your pain under control, the stress will subside a little bit. When you are calmed down from the pain you can rest. We have all been in the miserable and misunderstood phase. I am so sorry you are hurting so much.
There were nights when I was given a new med that I told my husband that I didn’t want to die in my sleep from the meds (after reading the side effects). I understand your fear of accidental overdose.
Klonopin is a anti-convulsant/tranqualizer. Very addictive FYI. They may not give you that.
But the Tramadol is built different and is not supposed to be addictive. It tricks the brain somehow…don’t all drugs! Don’t take my word for it. Maybe call your pharmacist and run the drugs by them first before you call your doctor. So you are prepared ahead of time. It will cut down on trying to explain yourself over the phone stress.
Ok, enough from me. I am sorry you are suffering.
Please write if you’d like to chat.
Keep us posted & know you can find relief. It is a game finding things that work well together & help the pain.
Stephanie
Lena…I am so sorry you are going through all of this pain…I know as a long time TN sufferer that I have had many episodes that I thought would NEVER go away…I’ve been fortunate that I have a good tolerence to meds. I take Tegretol and Depakote at this time and am having hardly any pain but it hasn’t always been this way…I’ve been on my knees crying,sleepness nights…just trying to get through the day. I have given up on pain killers…tried those and they only mesed with my mind and made me sick to my stomach, I see from your profile that you are going for an MVD.I know I will be there too when the meds no longer work for me and I know that time is coming. So bless your heart dear…It’s an awful condition to have. I hope that until you have your surgery that your Dr. can find something that can help your pain… Feel free to talk to me any time…take care, Judy
I’m sorry Lena that you are in so much pain. I don’t know what to tell you. Overall, I have been fortunate. My pain has been the screaming type pain but it has not lasted for long periods at a time. If I get that way and can take a sleeping pill and go to sleep, then when I wake I am usually somewhat better. I had a few good days but last night and today, the pain has increased. I am thinking about you and praying for all of us. Liz K.
How are you doing? Thinking of you.
S.
Ok still a lot of pain. I see my neurologist tomorrow. I am going to talk to him about changing my meds. You guys are all so nice. It is nice to have people who understand. I have found a plastic surgeon I want to be referred to for botox.
I just wanted to tell all of you thank you for you kind words. It means so much to be able to find people who understand what you are going through. I had a really good day today. My chiropractor did cranial work on me that really helped so she is going to start doing this every week with my adjustments. When I saw my neurologist he has decided to switch some meds. I am staying on topamax due to my migraines, which are severe but I am coming off of carbatrol and tegretol. He is going to put me on lamictal. He has me taking indomethicin this weekend three times a day to try to get rid of the pain. This sometimes really helps my migraines. I stop it on Monday. I can’t keep taking it because of the risk of what it can do to your stomach and liver. After taking a dose of this and the cranial workup my pain has gone from a 7-8 done to a 1-2. I almost want to cry just because I feel so good for the first time in 2 and 1/2 months. Again thank you all you all have helped me to get though this horrible time.
Have you tried Imitrex nasal spray when an attack begins? It really works for me.
Also, pure oxygen REALLY has helped me and it’s natural.
I know what you’re going through and it’s pure hell. Good luck and keep the faith.
I also take Cymbalta daily and Topamax at night.