CELEBRATION TIME - I am having another mini remission. It has now been just over 1 week pain free for me!
:)
I am now only taking the Gabapentin and the Endep. The endep was also meant to help me sleep at night as it has somewhat sedative properties. I’m now taking 50 mg’s of the stuff and for the past week, since the pain has stopped I can no longer sleep. If I do eventually get to sleep, I don’t wake till after lunchtime. It’s almost 3 am again now. When I can’t sleep I also cannot nap through the day.
I’m exhausted.
:(
While my body adjusts to Endep, it knocks me out and I sleep like a log. When my body adjusts to the endep I may as well have drunk a pot of black coffee and a eaten a full block of chocolate. I want to sleep. I don’t even yawn now.
Hi Kerry, I’m glad you are getting some relief. Apparently the gabapentin is working for you. I hope it continues. You were one of the ones that I really thought a lot about. You had so much pain and no relief. As far as insomnia, I don’t know what to tell you. Initially when I increased the gab I was drowsy but as I continued increasing, I think I may have the opposite effect. I take restoril for sleeping. I find if I sleep well, the pain seems better or I sleep through it. Hope to talk soon. Liz
Kerry…sooo happy to hear that you are able to rest and relax and feel relieved from the pain! I have been concerned about you and am glad to hear of your good news. Keep it up girl!
hugs from Judy
Thank you to everyone for your contribution to this thread.
Well the TN is back and bad. Having an attack now. It’s getting worse. Probably not aided by the insomnia. You know you start to feel better and do more - and I shouldn’t have done so much as I have done, which wouldn’t be considered much by a healthy person, but was a lot by my standards.
I can’t go to my local hospital as my least favourite dr in the entire world is on call there tonight. I’m weighing options.
Kerry, honestly what is the hospital going do? I have been there, insomnia in pain. Maybe this isnt the best advice but you have been in this situation before. I spent so many nights awake suffering, I had constant pain, the only way to deal with it was too take more Gabapentin, more tegretol and a I starting smoking cannabis. I am not suggesting you do the same, but God the pain the meds the unhappiness from being stuck with this pain, it helped me to calm down, mind you it didnt take the pain away, it helped mellow me out. I feel for you, I have been there, I am only 29 and suffered like that for a long time. I had MVD, I would suggest you have the surgery why suffer when there might be a solution. I wish I had the surgery sooner, even though it looks like i have relapsed but it worked to some degree, the pain isnt constant. I am sending my positive energy to you, I know you need it. Think about the MVD surgery
Hi Donna, nice to bump into another fellow Aussie here but actually more often than not, the hospital has been able to halt the pain in it’s tracks for me, so long as I can get there and don’t mind waiting. It turns out that a dose of an anti-inflammatory called Toradol is what they use - and it works, except being what it is can not be taken more than 5 consecutive days. The only time the injections didn’t work is when I’ve received them when that Doctor is on duty. I should say to that Dr that I am not stupid, but he no longer comes to see me personally as I brought him up in conversation to his supervisor. But the nights he’s on call and I get the injection I’ve had no reaction whatsoever to the med. In any sense. When this stuff gets injected into the upper arm you can feel a burning sensation and get a slightly deadened arm for a minute or two. The nights he’s on call, the med does NOT give me the burning sensation, but hey - it’s my word against his. And because they say I’ve had the injection - a 2nd shot cannot be administered within 8 hours! My paperwork on file there says the shot was given - and it’s pretty hard to contest it. Anyways, that’s why I go to the hospital. Because so far when the pain gets beyond my ability to deal with that intensity for that long - there’s nothing else I can do but go. I am talking when the pain stays at a 10 out of 10 for more than 8 hours… The longest attack has been 36 hours and didn’t go away - it was like a continuous unending electrical short in my brain for enough time I thought I was losing my mind from the pain. Since then when the TN1 attacks start, they do not go away by themselves no matter what meds or how much I take - it gets to the point I can’t even move my mouth to open it to put a tablet in there let alone swallow.
I have this year begun thinking about the MVD - and still am thinking about the MVD, am just lost about it all now. May have one lead on a potential Neurosurgeon (NS) who may look at my case - but he’s also a NS at a public hospital. But if I’m right, he’s the same NS who came to QLD from the US to perform QLD’s first MVD about 20 years ago. I just need to get in to see him - it would have to be publicly through a medicare referral as I do not have insurance or the finances to afford a 1 on 1 consult. So, then - waiting lists years long is likely.
When I say look at my case - it is because another leading NS in Brisbane saw me as a private consult and when I told her I’d become bilateral - she apologised saying that there was nothing she could do to help me. At that time, it hadn’t bothered me as I wasn’t looking for surgery - I had gone to see her because she was “the” doctor recommended to me re TN. But now after I did begin my thinking on surgery potential / options - it saddened me that a leading NS here said she couldn’t help me. She had simply referred me back to her Neurologist associate, who confirmed bi-TN and thanked me for coming to see him, told me to continue with my meds there was nothing else he could do to help me either… He also did not see it as a requirement for them to provide ongoing care…
That was a very disheartening time of my life as you can imagine. Now, I’m determined to get better answers, from a better NS if I can find at least one of them here in SE QLD preferably as I don’t want to have to go interstate unless absolutely necessary.
I really appreciate your sending positive energy my direction - thank you! It all helps Donna, how long after your MVD did you start having TN again? And are you able to let me know the name of your NS - at the very least, maybe he knows a reputable and TN educated colleague in QLD that he’d be inclined to recommend for me!
Thanks for that idea. My Neuro said to take ibuprofen too - I think advil is ibuprofen (scratching head). I don’t know nexium but I can guess it’s for reflux then And I know what you mean about drawers full of meds. I bought a lockable 2 door cupboard to all mine in.
Have been getting some sleep on and off thankfully and at last. Got to the ER and got given a shot at 3am, but no joy - have my suspicions about that doctor and his highly likely to be placebo medications. Ended up at the GP’s office the next morning. He gave me an injection out of my own stash… No help anywhere though…
Hi Kerry,
I was also considering MDV until my hopes were shattered my my family MD yesterday. He had sent me to a neurosurgeon in 2006 and he decided at that time that it was atypical, not really understanding all the info provided at the tiem figured I just had to suck it up and deal. I have both types of pain in the right side of my face, the shocks and the constant pain that never goes away. My doc once again referred me to the same NS and and he refused to see me saying that if they do MDV I risk worsening the constant pain. Apparently there is nothing that can be done for that. Once again I’m pretty much told to suck it up and deal with the pain. You mention that Tordol works for you. I have been on a steady diet of tordol since 2005. You are only supposed t take it for a 5 day max but I cannot function without it. I have to take Nexium everyday as well to protect my stomack but lately I don’t find i get enough relief from even the Tordol. Not sure what to do next. It is disheartening when that flat out tell me that there is nothing they can do. The past 2 1/2 weeks, I have had minimal pain but I know that that will be short lived.
Good luck in whatever you decide to do :)))
Hoping for many pain free days in thefuture!
Allyson
but actually more often than not, the hospital has been able to halt the pain in it’s tracks for me, so long as I can get there and don’t mind waiting. It turns out that a dose of an anti-inflammatory called Toradol is what they use - and it works, except being what it is can not be taken more than 5 consecutive days. The only time the injections didn’t work is when I’ve received them when that Doctor is on duty. I should say to that Dr that I am not stupid, but he no longer comes to see me personally as I brought him up in conversation to his supervisor. But the nights he’s on call and I get the injection I’ve had no reaction whatsoever to the med. In any sense. When this stuff gets injected into the upper arm you can feel a burning sensation and get a slightly deadened arm for a minute or two. The nights he’s on call, the med does NOT give me the burning sensation, but hey - it’s my word against his. And because they say I’ve had the injection - a 2nd shot cannot be administered within 8 hours! My paperwork on file there says the shot was given - and it’s pretty hard to contest it. Anyways, that’s why I go to the hospital. Because so far when the pain gets beyond my ability to deal with that intensity for that long - there’s nothing else I can do but go. I am talking when the pain stays at a 10 out of 10 for more than 8 hours… The longest attack has been 36 hours and didn’t go away - it was like a continuous unending electrical short in my brain for enough time I thought I was losing my mind from the pain. Since then when the TN1 attacks start, they do not go away by themselves no matter what meds or how much I take - it gets to the point I can’t even move my mouth to open it to put a tablet in there let alone swallow.