Hello from Noeleen. I am new to the site and have had T.N. 7 mths now. I am still having meds adjusted as very intolerant to all at first. I am on Baclofen 60mg a day Tegretol 800 a day Phenytoin 400 a day. down to 300 a day now. I am coming off tegretol slowly as always intolerant. I have had the most dreadful sweats which I feel dreadful before. I have been having them every day and night up to 100's a day. from 7 mths ago They last only 4 minutes but it feels like a furnace on the left side of my head and water pours all down my body and in the palms of my hand I have to sit up and drink masses of water. I use a cold cloth on my shoulders.. The T.N, is in my left side of face. I also have stiffness and quite sickening joint pain in my left shoulder which is getting worse every day. My neurologist says these are nothing to do with T.N. or the medication and to talk to my G.P. I did this and he tested thyroid and hormones and nothing. Already been through menoupause for 101 years. He said he thought it was the meds and asked me to speak to the neurologist again. I did, but no again, and the circle goes around and around with no resolution.. I am feeling very guilty about these added extras, as I call them. The T.N. pain is excrutiating as we all know and I just want to get rid of these other 2 things so I can sleep. I have not slept for 7 mths so now my head falls and I black out for a few minutes all through the day. I think if I got a few hours sleep I could cope better. I have never had health problems so am not making these things up. I just feel such a fraud when both medics are looking at me blankly and telling me there is no way anyone else has these things. Can anyone help. I think I am going crazy.
first of all if the doctors are making you feel like a fraud, well then screw them and find someone new. You deserve to be treated with respect and to get answers.
I had the sweats as well on tegretol and lyrica, it was worse than menopause which was over a few years ago, so I was not pleased with the night sweats at all. As for the other aches and pains, I know I had a weird reaction to tegretol and that was I got restless leg syndrome to the point it was keeping me up all night and still does even though I stopped taking it months ago. My neurosurgeon said he never heard of that but he is aware I am allergic to most drugs ( i aint kidding,even antibiotics give me major issues) so he said he believed me even though he was not aware of that reaction. At least he didnt make me feel like a moron.
I have thyroid disease, hypo, and you can have it and test ok, my tests come back that I am hyper when I am actually hypo (slow) so you may want to check again with and endocrinologist if you really think thats an issue.
Its also possible that your shoulder is just the stress of this damned disorder, i have a bad neck from a car accident and when the pain from tn was at its worse, then my neck would lock up as well.
I hope you get relief soon, i agree that the side effects of the meds are brutal
Wendy
natalia, dont ever let anyone tell you or make you feel as if you are making these things up. just because they have never heard of it in their time practising medicine, doesnt mean it doesnt exist. i find the problem with most medical people is that they are trained that certain things go in this box and certain things go in that bo and if we bring something that doesnt fit in any of the boxed they have been trained with than it cant be possible or it doesnt exist or its in our head. the problem with this is that there is no 2 people alike, their illness may be the same but may not present the same. when they act so pompous and say they have never heard of that happening so it cant be so, are they telling us that they have learned everything thay possibly can about every illness out there and they know everything about everyone so basically they are done their education. there is nothing else they could possibly learn throughout the rest of their lives as a doctor and a human being. WOW, wish i was that smart. i went through all of that for 6 years being told i was just depressed and if i fixed my depression my pain would go away. they nearly had me kill myself and ironically it was their treatment of me that cause the majority of my depression. shame on them. dont ever accept nothing but the best, most respectful treatment from anyone. i am finally after 8 years not accepting anything less. this site and eveyones stories and realizing i am not alone has given me the courage to do so. stand tall natalia, stand tall. im here for you anytime. take care, jacq
I am so sorry you are having so much problems. Wish I had an answer but don't give up and don't let the doctors make you feel crazy. Be a pest and be the squeaky wheel and just keep bugging them until they do find an answer. If you take what they say they will be like the king on the hill just saying it is all okay. I'd tell them when they don't sleep every night then they get to tell me it is all okay. Till then find an answer.
Hi crashgirl. It meant so much to me that someone else has had these sweats. I thought I was going crazy.I am not getting any relief from them. As they started with the Tegretol I am glad I am coming off it.I was very intolerant to it from the beginning and managed 6 months with it , so they feel I have given it enough time.To be fair it is my GPbeing unhelpful and dissmissive. My neurologist has been great and I do not know what I would do without him. I just see his frustration with these things. He did say that if the sweats were still here in a month he would try some medication. I was lucky[ unlucky] to have 2 in his office recently so there was a change in how important it was to address this. My GP's though are just terrible. They read the letters from the hospital wrongly 3 times now and gave me a dangerous levels of medication and then withdrew me off the wrong one. After the first mistake where they doubled the dosage requested by my neurologist my husband has been keeping an eye on things, with the pharmicist. When the instructions from my G.p. were discovered to be 600mg instead of 300mg , and this went on for 7 weeks, they took me off 300mg immediately instead of bringing down gradually and made me very very ill. What my neuorolgist said to the practice I can only imagine as it negated a couple of mths of the work he was doing. I did not even mention the joint and muscle pain to them. Instead I am paying a lot of money privately to a physio. I can only afford a couple of appointments as I am freelance and do not get paid if not working and my husband was made redundant at Christmas. Thank you for listening to this rant. And for taking the time to answer my post. I too am allergic to 4 different antibiotics that I know of. Thanks and I wish you relief from your pain.
Thank you for taking the time to reply. It means a lot. My GP doctors have been uncaring and insensitive during all this . Even when I phoned up on a Thursday to say I felt I was toxic and could I come down they said no and that I should have phoned at 8.30 a.m. for emergencies. When I told them I was at the hospital at that time for my MRI scan they still said no, and the best they could do was have a doctor phone me on the Friday. No-one did and in fact after the weekend from hell, I had to go down to the surgery on the Monday in my night clothes. I fainted in the waiting room and was left for an hour before any doctor or nurse came to see me. Then without any tests just a quick glance at my swollen grey face was told I was fine,fine.The next day I was taken into hospital Toxic with levels of phenytoin which had been high the week before at 20 instead of 12. now reading 28. I cannot look at that doctor again.No apologies from her and I ask for a different one now.. I would like to inflict on her for 3 days and nights what she inflicted on me. I am in despair bout General Practioners- the caring profession who do not seem to care at all, especially after 3P.M. on a Friday. Or after 5 any week day. My saving grace for the caring profession is my neurologist and his nurses who have been great and spent so much time to make me feel comfortable and understanding of the illness. Sorry for the vent. I am sure unfortunately that I am not the only person with these stories.which is pretty worrying. I would bd more patient if I could sleep. xN
Jacqueline Charron-Chapman said:
natalia, dont ever let anyone tell you or make you feel as if you are making these things up. just because they have never heard of it in their time practising medicine, doesnt mean it doesnt exist. i find the problem with most medical people is that they are trained that certain things go in this box and certain things go in that bo and if we bring something that doesnt fit in any of the boxed they have been trained with than it cant be possible or it doesnt exist or its in our head. the problem with this is that there is no 2 people alike, their illness may be the same but may not present the same. when they act so pompous and say they have never heard of that happening so it cant be so, are they telling us that they have learned everything thay possibly can about every illness out there and they know everything about everyone so basically they are done their education. there is nothing else they could possibly learn throughout the rest of their lives as a doctor and a human being. WOW, wish i was that smart. i went through all of that for 6 years being told i was just depressed and if i fixed my depression my pain would go away. they nearly had me kill myself and ironically it was their treatment of me that cause the majority of my depression. shame on them. dont ever accept nothing but the best, most respectful treatment from anyone. i am finally after 8 years not accepting anything less. this site and eveyones stories and realizing i am not alone has given me the courage to do so. stand tall natalia, stand tall. im here for you anytime. take care, jacq
Thank you I am going to do just that from now on...Need to get to the bottom of this and get some sleep.
pking said:
I am so sorry you are having so much problems. Wish I had an answer but don't give up and don't let the doctors make you feel crazy. Be a pest and be the squeaky wheel and just keep bugging them until they do find an answer. If you take what they say they will be like the king on the hill just saying it is all okay. I'd tell them when they don't sleep every night then they get to tell me it is all okay. Till then find an answer.
In the interim call your pharmacist! They are very underutilized and know the drugs the best!
Also, get the book "Striking Back" by Ken Casey - it's our bible here with over 50 meds to try, foods to eat, holistic options - its so important to self-educate!
Wish I could offer more advice, but I would say, find some new doctors. I have noticed sweats as well, but it's usually at night and I figure it's pre-menopause because I am 43. I am also hypothyroid. So I am really not sure what is causing mine, but I assume it's the pre-menopause and not the Tegretol since it's only at night.
TN is an awful thing to manage w/o the added extras you’ve described. It took me a while to find the PCP and pain specialist to help me manage this awful disorder. I even stayed with a neurologist who did not take blood every 3 months while taking tegretol. We must work to be self educated about this as well as work with a team of professionals who are helping us. Your docs do not sound very helpful. It would be good to get a second or third opinion. Find out who is the best in your area. The TN support site: endthepain.org has a LOT of resources for us. This site has very helpful info under face pain info tab.
Your journey to find what’s wrong and then to find the right combo of meds and treatments may take a year or two. This is because trying out each med may take up to 3 months to find the full benefit, if any…which totally sucks because we have a life to live!! Be patient and take it one day at a time. I will be praying for you everyday. Please feel free to msg me, if you’d like. Take care, sweetie 
i also have really bad sweats 24/7. i assumed they were because im menopausal but i have been hearing that more people have them on tegretol. mine are awful. if my husband has his body anywhere near me he can feel the heat radiating from my body without touching me. i also am hypothyroid. i hear this a lot too. jacq
I hear from someone every day that they got told they were making symptoms up. Why would a person spend good money and time and energy to ask a Dr. about a symptom that doesn't exist? Of course they are hving that symptom, but the doctors are taught that if they can't figure out the problem, blame the patient. It takes any blame off the Dr.
Millions of people have thyroid problems even if the test says their levels are fine, because the level of thyroid a person needs varies from person to person. Also you are only usually tested for 3 thyroid hormones, when there are 12. All of your symptoms fit hypothyroid. Here's a website that discusses what the doctors don't tell you, or don't even know in most cases. www.StopTheThyroidMadness.com . At the bottom of that page is a purple box that says "Symptoms". Click that first. They recommend taking natural thyroid instead of just T4 or T3 synthetic thyroids, cuz the thyroid gland has 12 chemicals in it. Taking T4 or T3 will make the blood tests look good but you'll still be sick because you might be lacking the other 11 thyroid chemicals. it's just as easy for your Dr. to write a prescription for the natural brand as for the synthetic brands. Mine refused, and all i can wonder is whether she gets a kickback from the synthetic brands, but not the natural brand. I now have to order it from the states (I'm in Canada) and pay for it without insurance help. I bought the book about how to recover from it, and it has definitely improved my symptoms and quality of life. I was really close to death when i was first diagnosed. That site and book saved me, gave me a better quality of life. The book has the same name as the website. You will feel beter within days with the guidance of that book, and natural thyroid. If your Dr. refuses to give you the natural prescription, let me know and I'll guide you to the best one I've found after years of searching.
Best wishes!
Sheila
I need to tell you I have a lot of pain on my affected side, going down my neck into my shoulder, shoulder blade and collar bone. I don't have it on the other side. My neurologist says it is unrelated and muscular, but I know how it hurts, and did not hurt before TN.
I have only the best wishes for you to have progress and find sympathetic care. Someone should help you find a way to get some sleep. There are many medications to try before despairing. Best wishes.
I also tend to think that those of us with hypo=thryoid tend to get the sweats more easily from the meds as well.
also Natalia I would be telling that primary care where to go by now, time to find a new one...and I agree with making them feel what we feel, that would be so cool. the first doctor I dealt with kept telling me I was a baby and not in much pain that it was just a sinus infection and I should "buck up" because there was no way I had as much pain as I had......I hope he gets pain like this for a week, the jerk deserves it.
I am not a mean person, but I get so pissed when patients arent believed..I have had it happen so many times, it took me a year to get the throid properly diagnosed.
Ok, I will calm down now, lol
Wendy
Thank you so much. Being on only one side, it seemed to me that it would be related. Anyway I booked myself a physio. I had my 2nd session of acupuncture today and it does seem to be helping in that I am a little more relaxed after it. However he did put 1 needle into the top of my neck/bottom of my head and the pain went mad. It has been awful most of the day since I had it.
I hope I have not done the wrong thing. That is why I think all these things would be better sorted out together I will let you know if I get permanant relief from it somwhere down the line.You should mention it again to your neurologist.
Regards Noeleen.
Thank you, i realise its a long road ahead. Everyone has been so kind.
LyndaS said:
TN is an awful thing to manage w/o the added extras you've described. It took me a while to find the PCP and pain specialist to help me manage this awful disorder. I even stayed with a neurologist who did not take blood every 3 months while taking tegretol. We must work to be self educated about this as well as work with a team of professionals who are helping us. Your docs do not sound very helpful. It would be good to get a second or third opinion. Find out who is the best in your area. The TN support site: endthepain.org has a LOT of resources for us. This site has very helpful info under face pain info tab.
Your journey to find what's wrong and then to find the right combo of meds and treatments may take a year or two. This is because trying out each med may take up to 3 months to find the full benefit, if any…which totally sucks because we have a life to live!! Be patient and take it one day at a time. I will be praying for you everyday. Please feel free to msg me, if you'd like. Take care, sweetie :-)
Thank you Sheila for your post, it is really informative. They did the blood test and it came up fine but the symtoms continue to get worse. I will push for another test and the natural meds. My last doctor who unfortunately retired last year did acupuncture and homeopathy but the doctors who are left do not seem to want to carry his work on. It is a shame. I will try. Got to get to the bottom of this.
With best wishes to you N
Sheila W. said:
I hear from someone every day that they got told they were making symptoms up. Why would a person spend good money and time and energy to ask a Dr. about a symptom that doesn't exist? Of course they are hving that symptom, but the doctors are taught that if they can't figure out the problem, blame the patient. It takes any blame off the Dr.
Millions of people have thyroid problems even if the test says their levels are fine, because the level of thyroid a person needs varies from person to person. Also you are only usually tested for 3 thyroid hormones, when there are 12. All of your symptoms fit hypothyroid. Here's a website that discusses what the doctors don't tell you, or don't even know in most cases. www.StopTheThyroidMadness.com . At the bottom of that page is a purple box that says "Symptoms". Click that first. They recommend taking natural thyroid instead of just T4 or T3 synthetic thyroids, cuz the thyroid gland has 12 chemicals in it. Taking T4 or T3 will make the blood tests look good but you'll still be sick because you might be lacking the other 11 thyroid chemicals. it's just as easy for your Dr. to write a prescription for the natural brand as for the synthetic brands. Mine refused, and all i can wonder is whether she gets a kickback from the synthetic brands, but not the natural brand. I now have to order it from the states (I'm in Canada) and pay for it without insurance help. I bought the book about how to recover from it, and it has definitely improved my symptoms and quality of life. I was really close to death when i was first diagnosed. That site and book saved me, gave me a better quality of life. The book has the same name as the website. You will feel beter within days with the guidance of that book, and natural thyroid. If your Dr. refuses to give you the natural prescription, let me know and I'll guide you to the best one I've found after years of searching.
Best wishes!
Sheila
I had those “hot flashes” too…and I am no where near menopause. I also had achy joints while taking tegratol. The shoulder that I sleep on ached throughout the day every day. According to my bloodwork I was having no adverse reaction to tegratol, but shortly after coming off of it my shoulder and other joints have stopped aching and went back to normal. My neurologist admitted that half the time they don’t even know why the medicines that work for this do…so I would imagine that would also mean they don’t know why the other side effects may come too. You’re not crazy!!
my gp thought i had hyperthyroid issues i was having all the symptoms of graves disease and my levels came back a little high he sent me to a specialist who was r rude and said they were not that high he took more blood wanted me to get an ultra sound but i never went back to him to do that and never heard about me tests at this time my tn was in remission about 2 weeks later it flared up????? not sure if it is related
Hello there, oh my you are a mess sweety. I think I may have something that will help you with all that neck and shoulder pain. Initially all my new pain started with my neck with just atypical facial pain. I have been getting botox injections from my neurologist for the neck and shoulder pain, of course the ATN, or TN you have won't respond unless those cervical muscles in spasm are referring some pain to your head and face and they can so it is worth a try. I have gotten some benefits, they need to be done every 3 months. Now I am type 2 ATN trying tegretol and a low dose of percocet. I read somewhere percocet works best for pain for TN or ATN, we don't want morphine or all those other pain meds that interfere with cognitive function. Tegretol is enough to swallow along with all those other drug combinations you are on. I take valium because I have a spinal cord injury, I guess it is like baclofen, so I have stopped there with the meds, tegretol, percocet, valium and a low dose of gabapentin 300 mg 3x. Still elevating slowly on the tegretol, but am getting some hours of the day of reduced pain, 2,3 maybe 4 at best.
I would change neurologists, find one that does botox, that one will be able to adjust your meds, I think you may be having side effects from the combinations of all those drugs. I am not an expert, but I am 56 and have been on everything and anything and I know how side effects from drug interactions can affect you. You need to get back to a baseline of minimal meds, introduce others slowly,
My goodness, you need to sleep, all these meds may not be allowing you to. If I get a good 7 hours of sleep, my pain is low when I wake, I just sleep at different hours of the day but I do sleep. I avoid my pain med at bedtime because I know it can interrupt deep sleep patterns. A good doc in sleep management might be able to weed out some of these drugs or adjust them, you are still in a lot of pain, so what are they really doing for you??
I hope this was helpful, let me know how you proceed, you need to change up your docs, it is something I have done at least a half dozen times to refresh my situation and evaluate all the meds.
You are not going crazy, but on this site you may or will lose your mind, this disease will drive you crazy, don't let it, keep posting, there is more help for you than you realize, you are not alone, take care of yourself, Sharon