Thanks for the info will look into it :)
Thank you I have emailed him. Much appreciated :)
Jimmy Works said:
"You have to relieve some stress and rest when you feel down". You are RIGHT about that. Stress is a killer. I often felt that stress...especially family stress....triggers it. I often wondered if it wasn't the cause. But there's probably no scientific proof of that. Click on the Members + Mods, Member Map from the home page. It will show you the location of the members here. The huge majority are in the more heavily developed countries, US, UK, AUS,GERMANY, NZ
Thanks Jimmy I am adamant it was the training that triggered it ( running up to 12-16 kms 4 x a week) although I can't seem to find much about causes only medical reasons? I have only ran a few times since symptoms started but really pay for it the next day - not sure if it's the running, the ear plugs for music or wind that triggers too afraid to try. I do have family stress but then again they are also the reason for my happiness ( especially the one that's too young to talk back) hehe I guess it's about finding a balance.
Did I read a post that MVD is "the preferred option?" Not from what I've read...not for type 2TN. Big red flag.
In the first few years all I could think was that I wanted to end the pain, not cope with it. If one pushes enough for the former you will find a neuro or someone to oblige you. Eyes best wide open and then some.
I've posted this before...but I'll fish for a reply again....Anyone use a biofeedback device as a way to structure/motivate one to routinely use meditation? HeartMath is the one that I'm considering. We all some to agree on stress reduction as part of pain management.
Wm, from what I've learned here, and also from Red Lawhern on this site, it seems MVD is "a" preferred option by many NS. One even told Red he thought of the GK and CK as "barbaric". I don't know. Maybe no one knows for sure 100%. And not all TN is the same...which complicates things further. I "think" I had type 1TN. Violent electric shocks. I mean shocks like I had stuck my face and teeth into a Tesla experiment. Then there was the crawling feelings. And on and on. I live near Birmingham, AL. The NS I was referred to preferred the GK and CK. So, that's what I got. I just simply trusted he knew what to do. Lo and behold it worked. 9 yrs later TN came back big time. So, he zapped me again, this time with the CK. Got numbness and neuropathy from that. Taking meds now and function very well. Not 100% but I function well enough I go about daily life with no changes. I asked my neuro about the MVD. He wasn't much in favor of it, stating the after affects of it sometimes was not worth the invasive risk. In layman's terms ...sometimes it doesn't work, and leaves you worse off than before, plus a hole in your head. Others I have talked to personally...face to face...had the MVD here in Birmingham and are 100% functional. They don't have the numbness I do, and they don't take meds. Another I knew up in Huntsville had TWO MVDs. She was not doing well at all ! So.....I don't know. Maybe my NS made the call based on what he saw on MRI....which was NOTHING. After my 2nd treatment (the CK) I saw a different NS in Pa. He said no way would he do MVD on me now. The CK had shrunk the T nerve. He seemed aghast at the fact it had shrunk because of the CK treatment. This is a well respected NS. He did nothing but MVDs for TN. Doesn't believe in GK or CK. Listen up here ! A couple years later I changed neuros. I told her what the NS in Pa said about the T nerve being shrunk, to which she said "which is what we would expect it to do". So....go figure. One NS believes in one treatment. Another believes its voodoo and goes another way. I don't fault any of them. They all want to help. And to complicate things more not all we patients are the same case. The new neuro I'm with now handles the neuropathy and crawling feelings with meds she prescribed and I am doing quite well. There was an old saying in the Old West..."gold is risky business at best". Well, dealing with nerves is a tricky thing at best.
Yes, I am having acupuncture at the Cleveland Clinic. Have been pain free for 14 months, all the difference inthe world. I can function and do everything I need to do and want to do. Get the treatments every 6 weeks, by Dr. Robert Kelly, you can find him on the net. Jeanne
MVD is most useful if there is evidence of compression of the nerve on MRI. And sometimes the pain presentation is not typical. I had atypical TN2 pain symptoms...not the typical pain of TN1...yet there was suspected evidence of compression on MRI (before the days of the new specialized techniques there are today) and I had an MVD with complete remission for almost 9 years. Unfortunately, adhesions formed and started pulling on the nerve and the pain came back.
wm phillips said:
Did I read a post that MVD is "the preferred option?" Not from what I've read...not for type 2TN. Big red flag.
In the first few years all I could think was that I wanted to end the pain, not cope with it. If one pushes enough for the former you will find a neuro or someone to oblige you. Eyes best wide open and then some.I've posted this before...but I'll fish for a reply again....Anyone use a biofeedback device as a way to structure/motivate one to routinely use meditation? HeartMath is the one that I'm considering. We all some to agree on stress reduction as part of pain management.
I have TN type 1, so my experience is very different. I think there are a lot of good suggestions in the replies here, and I am so glad you see that you are not alone. I found a Physical Therapist who has trained at The Barral Institute, and she does nerve manipulation and cranial sacral techniques on me that have allowed me to suspend (at least for last 2+ months), all medications. Her treatments are gentle but effective and there are a couple that I can do on myself.
If you Google The Barral Institute you can follow the leads to find out if there is a practictioner in your area. I believe it is worth a try.
I agree that Reiki and many alternative (non drug, non surgical) treatments are helpful. Keep looking, and try to stay positive.
Hello Emily, I have that too and when it first started, when it was it's worse I used over the counter ear drops despite the Dr.'s telling me that there was nothing wrong with my ears. It did take the edge off and was somewhat soothing. For my chronic sinusitis I use a good saline solution morning and night and that really helps! My jaw is a constant, sometimes a cream helps like Tiger Balm and of course meds, same for the TN. I would suggest to reduce stress, lol but that won't work for you, I couldn't imagine having this and raising children, I'm done after a few hours with my young grandchildren, best of luck to you.
Cheryl
Wow, I have been on carbamazepine for twenty years and i have suddenly been having thes wierd episodes where I get crazy dizzy spells, can't see and get the dr heaves, I have been hospitalized for this on two occassions. Every test that could be run has been , I have had mri;s ct scans, every blood panel known to man but all the doctors can come up with is that it must be some kind of drug. I am now wondering if it could have something to do with my sodium level dropping suddenly. If so, what would cause it to do that. I take 1800 mg carBEMAZEPINE EACH DAY. I sure would appreciate your input.
Twitchy
Dorsey Salerno said:
I was on Tegretol (Carbamazepine) when first had TN. It worked but I fell into low sodium, vomiting and fell, hitting my head on bricks. No other med worked, so a doc put me on a low dose of Carbamazeine and gave me a STANDING ORDER for sodium blood test. It's working, some 95%, and if I get off-balance, dizzy, I can pop over to hospital out-pt and get a sodium level blood test. I would never take this med without my standing order to back me up. Good luck!