I understand how you feel. When my TN first started, the initial dr kept pushing for ear drops and barely listened to me. Frustrated I went to a ENT and it seemed like he was sympathetic but didn't put it together. I was in sever pain and as I was leaving the office the jolts of tazers started and I literally turned around in the office hysterically but someone controlled tears and anxiety filled and asked him if he knew what getting ice picked over and over felt like. He brought me back in the office and prescribed gabapentin sent me home. less than 48 hours the pain and jolts were unbearable, went to the hospital and an ER dr there diagnosed my TN and I followed up with another dr. who has been treating me know. I have gone to 3 neurologist who basically don't see lesions. I believed i have been in remission for 5 months and stopped taking my meds and now they have started back and I have been out of work for 2 weeks. People just think its all in your head...so freakin frustrating.
Thermotronica - why that name? Have you tried prescription nausea meds? While looking for a job - you could volunteer, it really helped me get my mind off myself and hours very flexible ---while I looked for work. I volunteered at hospice with the dying -- not much for me to bitch about in that enviornment huh?
TNjourney: You do not have to see a lesion in an MRI anymore for many surgeons to do MVD if that is what you are trying to do.
Those tuning forks sound great. People don't take it at all seriously because were overall OK, we just feel pain most of the entire day, making us look "lazy". and wanting meds sure is a catch 21. Our want makes us look like addicts. I don't even get high, the pain absorbs all the pleasure! This website is great, I don't feel crazy reading others frustrations.
As for my screen name, I decided to make a company soon after I smacked the sanity out of me in 2009. I got really into physics then (I think I was trying to find out how my accident happened subconsciously) and realized everything is thermodynamics and movement. It was a cool name I thought for my company, started thermotronica corporation in Florida, bought the website, all my emails and so forth. Well , after getting my bank accounts ready, I started 4 prescriptions and lost most of my energy. Now I just refer to myself as a fictitious entity to remember my goals. Solar energy!
Volunteering would help me be less of a bitch I'm sure. My credit cards are maxed out but in the meantime, its a great idea. Money is a ridiculous concept when you know you're going to die.
As for prescription anti nausea, I'm a little skeptical as I tried ratatidine, or zantac, and along with the carbamazepine made me feel like I was dying. Not sure if anyone has tried this, or even have had a similar reaction, but it was the worst experience of my life. Watch out mixing the two. Anyways I don't take anything after that experience, except fennel seeds, those really work for nausea .
http://www.ehealthme.com/drug-interactions/ranitidine-hydrochloride-and-carbamazepine
Thanks, but I don't have any interest in mvd. i have read more and more i don't want to be the one that gets the pain back in 3 or 6 months. i am not convinced that procedure is a way to go. I had about 5 months in remission and stopped taking my meds. As much as I have been anti meds all my life and they are expensive the procedure is not an option for me. Thanks though
Kc Dancer Kc said:
Thermotronica - why that name? Have you tried prescription nausea meds? While looking for a job - you could volunteer, it really helped me get my mind off myself and hours very flexible ---while I looked for work. I volunteered at hospice with the dying -- not much for me to bitch about in that enviornment huh?
TNjourney: You do not have to see a lesion in an MRI anymore for many surgeons to do MVD if that is what you are trying to do.
Yikes, it takes so long for a seemingly simple diagnosis. Chronic pain (and nausea) affect you in so many ways. It really does change your personality to a point, at least it seems to take the fun out for me. I have an occasional day when pain is lower and I feel like myself. I seem to just not have much energy for other than the things I need to do, but I do work one day a week in a mostly non-stressful job, doesn't pay great, but covers meds, gas and VISA payment and trips to Good Will. I tried adding a second job in and it was too stressful, at least for my face! I have a Tai Chi tape that I keep thinking I'll try out. I miss my old activites, hobbies. I'm able to do bits on good days. Working just one day a week breaks things up at least.
There is a good article on the TN site that deals with how TN robs you of so many things, even your personality, I had my husband read it. was called Living with TN and the emotional side effects, posted by Mimi Oct 3, 2012.
Good luck to you and us all living in pain...waiting. kg
Thermotronica, medication side effects and interactions with depression are a known hazard zone for a lot of TN patients. I can well empathize with those who get deeply depressed and anxious from the emotional battering of the pain. Likewise with those who feel that they've been written off by their own medical doctors or by family whose expectations and demands are no longer being met.
For some people, some of the time, dealing with these emotions can be improved or better managed with the aid of tools like Rational Behavior Therapy or Rational Cognitive Therapy, or with a supportive counseling relationship. RBT and RCT seem to have a worthwhile record of better outcomes for people with PTSD, and for chronic pain patients. Neither is a cure, and neither start from the asinine assumption that depression causes pain (it doesn't, though it can play a role in making us more vulnerable to breakthrough pain by draining our resources and disturbing our sleep).
There is a link on our Main page to the Ben's Friends survey of patients who have been referred by a medical doctor to psychiatric professionals for evaluation. If you've ever been through that particular route, feel free to add your voice. We've digested records of 180 responders, and learned a lot already.
Regards, Red
Wow! thermotronica, I have just read your first post, amazing words right from the heart.
This is s true.....
I am still myself but with an extra layer of guilt that surrounds me, not being able to act completely myself but just yell inside of my electric skull barrier trying to escape but no cavalry is coming. I fear I will become what everyone sees me as, not knowing I'm still inside, just looking from afar at the first thing I see. That constant ache that has robbed me of thinking clearly.
I too get worried how people see me, especially my children. I fight the pain and hide it as much as I can. I also think this pain is changing my personalty, but I am strong and I can fight this nerve pain malfunction. By joining here I have found strength in numbers and I'm sure you will too, we can all fight this together.
Can I ask, when did you first suffer TN pain ? was it after any dental work ?
Cool, I'm going to look those up. Thanks Wes, I actually broke my face on a trampoline accident. Knee to maxillary and orbital area. They gave me ultram, and it didn't matter how much I took, it just always hurts.it was in 2008 and has progressively gotten worse. My tooth and jaw get both shocks and dull long boring pain so I can relate. I have read a lot of dental procedures sprouting tn on this website. Relating to all the members is a great help. Its cool that we are not alone
I havenât been on the site for a couple of days, had a vision emergency and have had to change meds, on the right track againâŚ
Which brings me back to the conversation of a couple of days ago, and keeping the smart, intelligent part of yourself alive. Do whatever you can to guard your mind. If physics is too challenging right now, find something else. I have half a dozen or so subjects close to my heart. Since concentration is a problem, I bite off smaller sizes, and digest what I can in any given moment. I have to keep coming back again and again, cover the same territory over and over. I treat my mind like that of a small curious child, and often with tears of frustration. But I have willingness, perseverance. Studying Zen (which I had been doing for about four years before all this started) and my own version of meditation is extremely helpful. This is related to Redâs suggestion. I also love Laurelâs suggestion too. Every moment that we are not suffering is a priceless moment. Those priceless moments add up and we need them to draw from in the worst of times.
Iâm so sorry that you were injured from the trampoline accident at a time you were getting your company going. I had a similar experience, 10days before my first episode I launched a novel at an international literary festival that had had taken me a lifetime to write, and then I couldnât follow up with proper publicity, etc. it broke my heart. I have some kind of deep faith though that I will be able to write something again. Some days though I am so woebegone and riddled with pain. Then I read some of my Zen stuff, or art stuff, or music, or brain stuff, or scientific America or listen to an inspiring podcast or TEDtalk and think right on, I am with these people, I can contribute to the discourse in which we all live again.
My most alert time is the morning, when my brain feels more like its old self. Thatâs when I do my hardest reading and note taking. I take my meds and get back in bed with a cup of and a stack of books.
So I encourage you to rekindle some intellectual path. You need to have faith in your abilities even if they are compromised.
Off course you want all the things we all want. There must be some kind of job where you can work around your afternoon nausea.
Anyway, I encourage you to find your way back to reading or playing the keyboard, if only for moments at a time.
Hope your better days are lasting.
Happy birthday bellalarke! Great words of wisdom from you. I can't be greedy with my wants. The morning is the best time for me too. I see every ted talk and know I could contribute one day. I hope your meds are doing you justice
Thanks for the birthday greetings.
Is been a great weekend, my daughterâs baby shower yesterdayâŚa baby boy is coming intro my life soon! And tonight I am going out for dinner. But Friday I didnât know if my vision would be good enough to drive here. Each day is an unknown. I will stay in bed and keep quiet until going out later. Everyone knows I could bail at any point.
I seem to have the meds in harmony again and now know the limits of mixing trileptal in with gabapentin.
Knowing we can contribute is a lifeline. Glad to hear youâve got a hold of that rope.
Hey Thermotronica, if youâre still following, came across something this morning about Botox and substance P. Has anyone suggested those for you?
âAlthough the mechanism of pain relief is unknown, it has been hypothesized to involve the inhibition of release of release of glutamate and substance Pâ
Yes I have come across that but my last neurologist didn't know, or care to inject anything. I asked him about the glycerol too. I'm shopping around now for a neurologist, I'm going to try the recommended one here. Thanks for the ssuggestion, I think a shot to my ganglion would help a lot
Iâm seeing an additional neurologist in September who does this. It was offered to me at a pain clinic a year and a half ago but not covered on my provincial insurance because I havenât had a stroke. Now that I have HFS too it might be covered, so definitely going to check it out while awaiting to see NS.
So yes, give it a shot. Find someone who is practiced with this method.
The other thing on the horizon is nanotherapy. I actually sat next to a researcher at the University of British Columbia who is working on this. He says medicine is going to change in major ways in the next decade.
NANOTHERAPY?! can you elaborate? little robots?
http://en.wikipedia.org/wiki/Nanotechnology
thermotronica said:
NANOTHERAPY?! can you elaborate? little robots?
Hey, good to see you back! I was wondering how you are doing.
In the case of cranial or other brain issues, bio nano materials would go in and repair some of the cellular damage around the affected nerves and clean up debris that damaged glial cells cannot do anymore because of demyelination, etc. also clean up tissue that has died or is dying. Hopefully remyelinate, etc. . Obviously this is a very off the top of my head description and I will found you something better later today.
Nano therapy. Bought my grandson nana robots. They are super hyperactive robots. Discretion would be my concern. What to destroy, what to leave alone. There has got to be a more sane way. Oh wait a minute, Iâm the woman that had a metal frame screwed into my head. Rough weekend. Had to fight off a panic attack while working out today. Sometimes I am amazed at how much pain I function with. My interpretation of what is acceptable keeps changing. I have a mild tremor in my hands and legs when I pick them up to do something. Not sure where this is coming from, or if I should accept this as part of this madness.
http://en.wikipedia.org/wiki/Nano-scaffold
Nano-scaffold
From Wikipedia, the free encyclopedia
This article needs more medical references for verification or relies too heavily on primary sources. Please review the contents of the article and add the appropriate references if you can. Unsourced or poorly sourced material may be removed. (December 2012)
Nano-scaffolding (or nanoscaffolding) is a medical process used to regrow tissue and bone, including limbs and organs. Developed by the American military, the medical technology uses a microscopic apparatus made of fine polymer fibers called a scaffold.[1] Damaged cells grip to the scaffold and begin to rebuild missing bone and tissue through tiny holes in the scaffold. As tissue grows, the scaffold is absorbed into the body and disappears completely.
Nano-scaffolding has also been used to regrow burned skin. The process cannot grow complex organs like hearts.[2]
[edit]How it works
Nano-scaffolding is very small, 100 times smaller than the human hair and is built out of biodegradable fibers. The use of this scaffolding allows more effective use of stem cells and quicker regeneration. Nan-scaffolding is placed into the body at the site where the regeneration process will occur. Once injected, stem cells are added to the scaffolding. Stem cells that are attached to a scaffold are shown to be more successful in adapting to their environment and performing the task of regeneration. The nerve ends in the body will attach to the scaffolding by weaving in-between the openings. This will cause them to act as a bridge to connect severed sections. Over time the scaffolding will dissolve and safely exit the body leaving healthy nerves in its place.
This technology is the combination of stem cell research and nanotechnology. The ability to be able to repair damaged nerves is the greatest challenge and prize for many researchers as well as a huge step for the medical field.[3] This would allow doctors to repair nerves damaged in an extreme accident, like third degree burns. The technology however, is still in its infancy and is still not capable of regenerating complex organs like a heart, although it can already be used to create skin, bone and nails.[4] Nano scaffolding has been shown to be four to seven times more effective in keeping the stem cells alive in the body, which would allow them to perform their job more effectively. This technology can be used to save limbs that would otherwise need amputation.[5]
Nova on PBS has a segment on this for organ building
Also, it was actually talking with someone involved in this that really got me excited. The sad thing about the conversation was that his wife was sitting between us and she has brain lupus and so this technology will not be able to help her on time. This was one of the most intense conversations of my life. The researcher totally understood what kind of pain I had and hers was almost identical except hers is systemic and killing her quickly. They are in their early 30s. I was on my way to visit my daughter in Montreal and they were on their way to tell their parents her diagnosis. I have looked at my pain differently ever since. This is bad but it is not killing me off cell by cell. Life is still large.
Very interesting. I have heard of something similar to this for failed bone grafting in trying to rebuild an area to insert a tooth implant. I myself tried bovine to rebuild an area 3 years ago. It was unsuccessful due to nerve pain. I have often wondered if it caused my TN. So it was suggested to me that some sort of scaffolding might be appropriate. Itâs a back molar and I opted out for a partial.,then all this craziness began and I forgot about it.