Nancy, I was not under the supervision of a doctor when I stopped the meds. That was my fault. But I was so sick that I didn't want to put any more meds into my body for fear I would get sicker.I would never recommend just stopping meds cold turkey. The purpose of the anti seizure drugs is to slow neural activity and that it does. But if its slowing down all neural activity from the brain, it might just be suppressing any chance for the body to rewire and reset itself. If in fact there is a nerve being compressed, then it seems to me it would hurt all the time... I don't believe a compressed nerve is the cause of the pain. I believe people who suffer from Trigeminal neuralgia have autoimmunity issues and severe sensitivity to slight changes in pain that otherwise normal people do not react to. I would like to know also how many people with TN react to cold and heat quickly.... like cold hands and noses in the winter.... Nancy E. Harris said:
Hello Laura - were you under the supervision of a doctor to stop all drugs "cold turkey?" To me, that would through you into a seizure & you should never increase or decrease your dosages of meds without your doctor!! Who told you to do this? I like the idea that our bodies could repair themselves without the meds. Have you asked Red Lawhern this question. He is extremely knowledgeable about TN. I sure would like to be out of pain for 4 months though. Let us know what happens! Nancy
Laura, my TN is brought on by cold. I can go months without pain and then the first cold or windy I get into, there it comes. So normally I take 300 mg of Gabapentin but if in pain, then I add another 300 mg for a total of 600 mg per day. I do not like taking the anti-seizure medicine but my neurologist says that maintaining at 300 mg daily keeps the onset from coming. I bought some anti-inflammatory supplements from a health store today and will see what my doctor says about taking these. I can say that before I was diagnosed, I was in excruciating pain such that I could not even open my mouth. Today, I am fine most days with a twinge of pain occasionally. I also have found that sleeping under a ceiling fan can trigger an episode. This disease is CRAZY!
I also do have autoimmune disease although all tests I've had done do not give a firm diagnosis of what type. My ANA factor indicates I have RA but I have no symptoms. Guess that is a blessing, maybe later in life.
Laura said:
Nancy, I was not under the supervision of a doctor when I stopped the meds. That was my fault. But I was so sick that I didn't want to put any more meds into my body for fear I would get sicker.I would never recommend just stopping meds cold turkey. The purpose of the anti seizure drugs is to slow neural activity and that it does. But if its slowing down all neural activity from the brain, it might just be suppressing any chance for the body to rewire and reset itself. If in fact there is a nerve being compressed, then it seems to me it would hurt all the time... I don't believe a compressed nerve is the cause of the pain. I believe people who suffer from Trigeminal neuralgia have autoimmunity issues and severe sensitivity to slight changes in pain that otherwise normal people do not react to. I would like to know also how many people with TN react to cold and heat quickly.... like cold hands and noses in the winter.... Nancy E. Harris said:
Hello Laura - were you under the supervision of a doctor to stop all drugs "cold turkey?" To me, that would through you into a seizure & you should never increase or decrease your dosages of meds without your doctor!! Who told you to do this? I like the idea that our bodies could repair themselves without the meds. Have you asked Red Lawhern this question. He is extremely knowledgeable about TN. I sure would like to be out of pain for 4 months though. Let us know what happens! Nancy
Laura - I would like to know more about your theory as it relates to heat and cold. I am definitely a possible candidate for that. I'm new to this website and fairly new to the nerve attacks (8 months). My new Neurosurgeon yesterday questioned whether I really had TN or if I had something in addition because I am now having a different kind of pain on the other side of my face. I wish there was some way to address you directly through this website (or anyone for that matter) without having to wade through many replies to one person's discussion. I have also been unsuccessful in starting a new discussion or asking a question on here. There's never any response. Sandy
Laura said:
Nancy, I was not under the supervision of a doctor when I stopped the meds. That was my fault. But I was so sick that I didn't want to put any more meds into my body for fear I would get sicker.I would never recommend just stopping meds cold turkey. The purpose of the anti seizure drugs is to slow neural activity and that it does. But if its slowing down all neural activity from the brain, it might just be suppressing any chance for the body to rewire and reset itself. If in fact there is a nerve being compressed, then it seems to me it would hurt all the time... I don't believe a compressed nerve is the cause of the pain. I believe people who suffer from Trigeminal neuralgia have autoimmunity issues and severe sensitivity to slight changes in pain that otherwise normal people do not react to. I would like to know also how many people with TN react to cold and heat quickly.... like cold hands and noses in the winter.... Nancy E. Harris said:
Hello Laura - were you under the supervision of a doctor to stop all drugs "cold turkey?" To me, that would through you into a seizure & you should never increase or decrease your dosages of meds without your doctor!! Who told you to do this? I like the idea that our bodies could repair themselves without the meds. Have you asked Red Lawhern this question. He is extremely knowledgeable about TN. I sure would like to be out of pain for 4 months though. Let us know what happens! Nancy
I do believe with every fiber in me that Trigeminal is brought about by an artery pressing on the Trigeminal nerve. Why that happens is still not clear from my understanding. My doctor said there was a huge artery pressing on my trigeminal nerve and when I woke up that pain was gone. I know some people don’t have that result. My doctor said he feels the reason why my surgery was so successful was because I had my MVD surgery 10 months after my first pain. I have been in a research group that says the longer the pain goes on, the less flexible the nerve is and the results are usually not as good. As of today, I have gotten numerous folks in to my doctor and all but 1 have been freed from the horrible pain of TN. So much research is still needed. Praying…
I would like to direct you to http://www.livingwithtn.org/page/cervogenic-model , it might answer some of your questions,including why dentistry triggers TN. And as for TN by a normal vessel, I would have to agree with you, After all nerves even have internal arteries/ veins and yet we are meant to believe external vessels cause TN???
Laura said:
Nancy, I was not under the supervision of a doctor when I stopped the meds. That was my fault. But I was so sick that I didn't want to put any more meds into my body for fear I would get sicker.I would never recommend just stopping meds cold turkey. The purpose of the anti seizure drugs is to slow neural activity and that it does. But if its slowing down all neural activity from the brain, it might just be suppressing any chance for the body to rewire and reset itself. If in fact there is a nerve being compressed, then it seems to me it would hurt all the time... I don't believe a compressed nerve is the cause of the pain. I believe people who suffer from Trigeminal neuralgia have autoimmunity issues and severe sensitivity to slight changes in pain that otherwise normal people do not react to. I would like to know also how many people with TN react to cold and heat quickly.... like cold hands and noses in the winter.... Nancy E. Harris said:
Hello Laura - were you under the supervision of a doctor to stop all drugs "cold turkey?" To me, that would through you into a seizure & you should never increase or decrease your dosages of meds without your doctor!! Who told you to do this? I like the idea that our bodies could repair themselves without the meds. Have you asked Red Lawhern this question. He is extremely knowledgeable about TN. I sure would like to be out of pain for 4 months though. Let us know what happens! Nancy
When I was on Tegretol, it definitely interacted negatively with my Synthroid I take for hypothyroidism. My hypothyroidism was well controlled on Synthroid for about 6 years before my first TN symptoms. While I was on Tegretol, I went into full hypothyroid symptoms and my numbers showed it. I had a successful MVD surgery 2 years ago. After I weaned off the drug, I had to work with my primary doctor for a year constantly adjusting my Synthroid dose to get me back into a normal thyroid state. I'm there again, thankfully, and all is well now.
I'm sorry it took me so long to respond but unfortunately, I won't get to Hopkins for another five months. The waiting list to get into the neuro clinic is really long. I'll post what I learn then. I agree with you, I'm not willing to have a surgical procedure on my brain if the success rate is low and the risk is high.
Cathy In MD
Laura said:
Cathy, Let me know what the doctor says at John Hopkins. I hesitate to do any surgery if the recurrence is high. I have had type 2 for 12 years with remissions on and off.... always retriggered by dental work. I have to believe the body has a way of resetting itself... maybe due to medication or just time. I also believe there is a relation to trigeminal neuralgia and circulation and autoimmunity in the body. If there was a blood vessel compressing the nerve, then the pain should always be there if. It wouldn't just come and go. As docs have mentioned before,they have seen cadavers with blood vessels compressing the trigeminal neuralgia and these people have experienced no pain. Doesn't make sense.
Cathy in MD said:
Laura, I saw your message late in the process and I've read through a lot of it but honestly, not all of it. It seems to have sprawled all over the place. I may be wrong but it appears that part of what you are asking is "Is there a surgical procedure available for those of us with TN2?" If so, has that been answered? If so, I am wondering the same thing. I am at the point of needing narcotics and would love some of way of living.
I know that some doctor's will perform surgery on TN2 patients and things will get worse. So, quite frankly, I am scared and my neurologist doesn't even know that there are different types. I am going to go to Hopkins but it is a long wait to get in.
I'm sorry for the delay in responding. The procedure is called a rhizotomy, my pain specialist doesn't do them but it is possible that a neurosurgeon would.
Good Luck,
Cathy In MD
sandy1943 said:
Cathy, Which procedure was the one your pain specialist said was too dangerous??
Cathy in MD said:
ModSupport,
My pain specialist performs this procedure on my neck and it is effective for about six months. I have had it done about six times now and am starting to notice a numbness, yet a soreness in a part of my neck and shoulder when it is touched. I asked him about the procedure for my TN2 and he told me that it is SO dangerous that he will not perform them at all. When I discussed it with him further, he jokingly told me that his wife enjoyed shopping far to much for him to ever take on the risk of doing such a dangerous procedure. He is the one that was finally able to give me a diagnosis after 30 years of not knowing what was wrong and quite frankly, I trust him with my life.
Just my two cents,
Cathy In MD
ModSupport said:
Pain management specialist have found that Injection of glycerol into the gasserian ganglion is a simple and effective treatment. Using a brief, intravenous anesthetic a needle is introduced into the nerve in the base of the skull and a small amount of glycerol injected. The treatment only takes a few minutes. 85% of patients achieve immediate pain relief and persisting numbness in the face is unusual and infection is rare. Recurrence rates are relatively high: about one-half will recur over 3 to 4 years. Reinjection may be performed, but glycerol injections become less effective after several are performed. There is of course a limit to how many times this procedure is effective so usually on finding success they move to Rhizotomny.
The advance procedure is called Rhizotomy. These days it is performed primarily by Pain management specialists (usually anesthesiologists with advanced training) Rather than grain alcohol they use other injectables including glycol and local anesthetics. They tend to try something temporary first to "test" the procedure. They also to RF ablation which is also temporary The ablated nerve grow back at about 1mm/year. Some centers are adding cones to the end of the ablated nerve The extreme version of the procedure is the Gamma Knife. It can be effective for type two as it only addresses pain, not the cause.
Hallo Laura
Sorry I am only answering now. After 40 yrs of TN and spending over 3mil dollars on researching, operations and meds I am wary and worn by the medical fraternity. Be careful not to operate too quickly and make sure that if something do go wrong you are prepared to live with the aftermath. I had to. The pain can be triple and since TN is not a buzzword condition believe me medical science won’t venture into a lot of research.
Nowadays I am on morphine. A heart valve replacement earlier this year had me in hosp for a month and the total lack of understanding and empathy from the surgeons and medical staff lead to them only giving me some pain medication that is as good as a piece of plaster on a 80% body burn. It was so bad I tried to commit suicide. They brought me back and chastised me for being stupid.
I pray all if you may find an answer but 40 years of hell is enough.
Eileen... I have been trying to find the name of the procedure I had but so far no luck. My next move is to go directly to VGH and see if they have anything on file from the early 90s related to the procedure I had done at their facility. I am overwhelmed by some of the stories and bewildered that so many suffer so much. My first treatment ( Alcohol Injection ) lasted many many years and the last treatment / procedure is still working ( over 20 years ) so why me and not others? Obviously there are many variations of TGN and I am clearly unaware of them. If you still want me to keep trying to find out what it was I had done please let me know. More than happy to get to the bottom of this. ... Uncle Al
Eileen said:
Please do Uncle Al! I for one will be very interested .You have a very valid point in saying that your procedure lasted for twenty years.....I won't say no to that ( lol!)I will indeed stay tuned..
Oh yes please uncle Al I will be most appreciative if you will do that! Thank you and it is good of you to try and help us when you have been so longed recovered !
I have in front of me a copy of my request for info related to my procedure sent to Vancouver General Hospital ( records ) dated Jan 26/16... and have yet to get a response. I am so sorry to just get back to you but I lost all my contact info in a PC crash and have finally got it back after 3 tries.. I am willing to try again and to go to a higher authority. No response at all is just not acceptable. I even included a signed waiver for release of health records... please let me know if I am just wasting your time and energy here.
No Uncle Al you are not wasting your energy at all not for me or anyone else on this site who you might be helping.Here in the UK we have a right to get all our patient notes but obviously I do not know the procedure in the USA.But as you say no response is unacceptable…thank you for your help and good luck in getting those notes!
OK Eileen....... I will see if I can find a way to get a response.... I am actually in Canada, not the USA but access to health info is a right in both countries... but my problem may be the amount of time that has past since my procedure. It was around 93-95 and I am still pain free with no noticeable side effects. On a more interesting note.. I talked with a Dr. Turnbull about a year ago and reminded him he had done the procedure on me 20 years back... not me he said... maybe my Dad.. time flies !
Please don't stop taking Levothyroxine. If you have hypothyroidism, this is the only way to alleviate symptoms that can seriously affect your health. I've been taking it for 21 years and have had TN longer than that. I have never noticed an interraction between my thyroid medicine and my TN medicine. But, I don't take Tegretol. I take Lamotrogine. If you have a problem with both medications, see your doctor. Don't decide on your own to not take something. Please. Woman with the electric teeth said:
That's very interesting, Wendy. I take Levothyroxine for hypothyroidism. It's a new drug for me, and I'm not sure if I will be continuing with it. Can I ask how Tegretol interacted with your medication, and was it Levothyroxine (or the US equivalent) you were taking?
Eileen... after 5 months I now have the info in hand on my procedure... which was 06/22/93 and I am still pain free so am hoping this info may be of use. I am thinking I have seen this procedure mentioned along the way in other postings so it may be nothing new... maybe the fact it has been so helpful for me is encouraging but wonder if the results I have experienced are the same for others??
the procedure is called " a Trigeminal Rhizotomy " so nothing new I am sure. They have actually included a full description of the sedatives used and a full description of the procedure... I sincerely hope some of this is helpful and if you want a copy of the description please let me know...happy to send the info along. Please let me know that you have received this email info ( at last ) ...thx for your patience.
Sunny and warm here in Chase BC today and almost time for a cold one... kindest regards, .. Uncle Al