Can anyone tell me why I am getting all these extra problems?

Hello Sheila, I know tegretol can decrease the effectiveness of thyroid meds and they sometimes have to be increased. I have hypothyroidism but continue to have the sweating, but I live in Florida. I just started tegretol, low dose and elevating slowly. Blood work will have to be done to check kidney function as well as my thyroid. What exactly is the name of this natural drug to take for hypothyroidism? I have changed thyroid meds 2 times, the generic was being prescribed but we tried the non-generic, but the copay was high and the sweating continued. I may need this natural drug to manage my thyroid disease, I am 56 and have been diagnosed with thyroid disease for 10 years.

Someone else is having a lot of sweating from a combination of meds to treat TN. This might be thyroid disease??? I will have to check who posted this, we really need to be on top of these drugs, some are not effective and the side effects are not worth it. Thanks for the post. Sharon

Natalia said:

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

hey there, you may need to get your thyroid checked out, these sweats may be from thyroid disease, not sure but it is worth a try and I have thyroid disease, hypo, and I get sweats. Tegretol can reduce the effectiveness of my med for thyroid disease, however another post is here about a natural thyroid med that actually addresses this disease. I am getting this, now I know the blood work comes back normal because they only check 2 levels of 11 or 12 that correct this disease. Hope this was helpful, Sharon. I have right-sided ATN type 2.


Thank you for your info , it makes a lot of sense to me. I also am 56 years old. I was originally diagnosed by my G.P. and given nothing. Just told to wait for an urgent MRI which would be 3 weeks. 3 months later I had no letter and was so ill I thought I was going to die-and I am not a dramatic person.. I was always brought up to grin and bear it and do not argue with the doctor but I was so bad that my husband rang my cousin.s husband who is a nuerologist at 3.a.m. He was brilliant. He was so angry that I had been left like that and said if anyone is referred to him with a diagnosis of T.N. or a possibility of it he would see them that day. the reason I am telling all this is to explain why I am on so much medication. IThe whole thing had been left for so long that I was projectile vomiting ove r the poor guy and could not speak. Had been drinkin stock thru a straw for 8 weeks.so I needed an emergency intravenous 1000 mg of phenytoin to put me out of some misery and this was reduced to 300 the next day.Thus I started with tegretol and Phenytoin. Could not tolerate tegretol though remained on it and was put on baclofen with a view to reducing tegretol and am now off tegretol completely. I am now reducing Phenytoin as they wanted to bring that down and eventually off. Next week I find out what needs to be added to the baclofen what replaces phenytoin. All of this is being monitored and I can go to hospital the minute the pain gets worse . This has been happening this week and I am going to Neurology to day,as it is time. They explain everything and having stabalised me over these months are now trying to find a more 'liveable' dosage.. I am nearly there I think. It is hard as I am still not getting sleep because of the sweating. Having ruled out thyroid last week, and given me HRT for the last 3 mths it is actually getting worse. The HRT was a long shot as I had been thru all that 10 years ago and it did not feel like this at all. Anyway they say that they will now giving something to help the sweating having ruled all these out.Here.s hoping I get some sleep soon. It is all a mess and very complicated for them as when I went for the nerve blocks they found an abcess on my jaw bone which was complicating all the symptoms for them. Sorry to ramble on. It has been a long road of mishaps and mess but I am in good hands at hospital .Wish I could say the same of my G.P and dentist who if both had done their jobs in the first place would not have left me in the state I was in.Very very angry with them.Lets hope this starting again with the meds works.Regards and hope you are feeling better yourself. .Just seen your post. My thyroid results came back normal twice, should I still push for the natural med??


Granny said:

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


Hello Natalia, you have been through the mill, so sorry, been there myself with a crippling type of back surgery. Now this, I have a suspicion your sweating may be coming from a sympathetic nerve condition or another woman has posted just because your results for TSH that they test come back normal does not mean you have a normal thyroid. I now know and she has a sight posted to go to, I will look her post up, there are 12 other substances that are not checked for a normal thyroid and there is a medication that is not synthetic that will address all of this. Don't know if they are hormonal substances that the thyroid needs. So I hate being cold, yet I still sweat, not like you, but I live in Florida, my hold head and scalp sweat, my hair is short but still gets drenched with sweat. This is one of the conditions of hyro-thyroid, the sweating that is not controlled, my internist changed my thyroid med from generic to brand name but it did not help me so I went back to the generic, expensive copay. I think this natural medication is expensive but I am going to find out what it is, if the tegretol helps me it can reduce the effect of the thyroid medication, my TSH needs to be checked.

I am glad you get to go to the hospital when it gets so bad and they treat you for this overwhelming pain, yes, just knock me out for awhile. I do know this for me, a good sleep breaks the pain cycle. I can sleep, but I sleep at a different time of the day and am an early am riser and down at 1pm, I start to fall asleep about 4pm and sleep until 1am or 2am. The time change is happening this weekend which means I will be up an hour earlier. I hate this sleep pattern, I can't join in anything in the evening, I have almost fallen asleep driving home, not safe.

Do some research on the sympathetic nervous system, I will too and let's see what we come up with. This a guess, but that is what the doctors do, they make there best guess after ruling out. I would not rule out thyroid yet. I don't know how you or even I can get tested for more than the TSH. Will look into it. You take care, I do understand now how all the meds were introduced to help you, I have been there with over 14 surgeries for lumbar, thoracic and cervical. Pain pump for awhile I needed other drugs to keep me from getting sick, one was a mood stablizer, I have been on up to 14 or 15 meds all at once. Mine have gone up to about 9 or 10. Some are because of my age, 56, blood pressure med, thyroid med, diuretic with potassium, reflux med and all the others are for pain, got 5 of those, so I know how they accumulate. Tegretol is not an easy drug to tolerate so I will know in a month if I can even take it, and if I am not getting a good response then it will get booted out, there are other drugs to try, can't take lyrica, cymbalta or celebrex or high doses of gabapentin. All cause more swelling or kidney failure so I have to be careful, even the tegretol can cause a kidney failure I have had in the past so blood work will be done this month. I will do some googling and check some posts for this thyroid thing, I haven't yet but will. I hope you can start to sleep soon, it is very important to be able to do that, your body is not rested, your pain is even more difficult to manage. God Bless You, Sharon.
Natalia said:


Thank you for your info , it makes a lot of sense to me. I also am 56 years old. I was originally diagnosed by my G.P. and given nothing. Just told to wait for an urgent MRI which would be 3 weeks. 3 months later I had no letter and was so ill I thought I was going to die-and I am not a dramatic person.. I was always brought up to grin and bear it and do not argue with the doctor but I was so bad that my husband rang my cousin.s husband who is a nuerologist at 3.a.m. He was brilliant. He was so angry that I had been left like that and said if anyone is referred to him with a diagnosis of T.N. or a possibility of it he would see them that day. the reason I am telling all this is to explain why I am on so much medication. IThe whole thing had been left for so long that I was projectile vomiting ove r the poor guy and could not speak. Had been drinkin stock thru a straw for 8 weeks.so I needed an emergency intravenous 1000 mg of phenytoin to put me out of some misery and this was reduced to 300 the next day.Thus I started with tegretol and Phenytoin. Could not tolerate tegretol though remained on it and was put on baclofen with a view to reducing tegretol and am now off tegretol completely. I am now reducing Phenytoin as they wanted to bring that down and eventually off. Next week I find out what needs to be added to the baclofen what replaces phenytoin. All of this is being monitored and I can go to hospital the minute the pain gets worse . This has been happening this week and I am going to Neurology to day,as it is time. They explain everything and having stabalised me over these months are now trying to find a more 'liveable' dosage.. I am nearly there I think. It is hard as I am still not getting sleep because of the sweating. Having ruled out thyroid last week, and given me HRT for the last 3 mths it is actually getting worse. The HRT was a long shot as I had been thru all that 10 years ago and it did not feel like this at all. Anyway they say that they will now giving something to help the sweating having ruled all these out.Here.s hoping I get some sleep soon. It is all a mess and very complicated for them as when I went for the nerve blocks they found an abcess on my jaw bone which was complicating all the symptoms for them. Sorry to ramble on. It has been a long road of mishaps and mess but I am in good hands at hospital .Wish I could say the same of my G.P and dentist who if both had done their jobs in the first place would not have left me in the state I was in.Very very angry with them.Lets hope this starting again with the meds works.Regards and hope you are feeling better yourself. .Just seen your post. My thyroid results came back normal twice, should I still push for the natural med??


Granny said:

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


Natalia, yes the sympathetic nervous system can cause excessive sweating, I wish there was a way to download this info, but google it for treatment and check the wikipedia site, they do give treatments medically, I found some other sites but was whoa, dangerous don't go to them, there was some herbal tea that can help this maybe. This is right down the alley with your neurologist so I would ask, if you get a no, then let's find out about this natural med for the thyroid. I will look that up next for you and me. Sharon
Granny said:


Hello Natalia, you have been through the mill, so sorry, been there myself with a crippling type of back surgery. Now this, I have a suspicion your sweating may be coming from a sympathetic nerve condition or another woman has posted just because your results for TSH that they test come back normal does not mean you have a normal thyroid. I now know and she has a sight posted to go to, I will look her post up, there are 12 other substances that are not checked for a normal thyroid and there is a medication that is not synthetic that will address all of this. Don't know if they are hormonal substances that the thyroid needs. So I hate being cold, yet I still sweat, not like you, but I live in Florida, my hold head and scalp sweat, my hair is short but still gets drenched with sweat. This is one of the conditions of hyro-thyroid, the sweating that is not controlled, my internist changed my thyroid med from generic to brand name but it did not help me so I went back to the generic, expensive copay. I think this natural medication is expensive but I am going to find out what it is, if the tegretol helps me it can reduce the effect of the thyroid medication, my TSH needs to be checked.

I am glad you get to go to the hospital when it gets so bad and they treat you for this overwhelming pain, yes, just knock me out for awhile. I do know this for me, a good sleep breaks the pain cycle. I can sleep, but I sleep at a different time of the day and am an early am riser and down at 1pm, I start to fall asleep about 4pm and sleep until 1am or 2am. The time change is happening this weekend which means I will be up an hour earlier. I hate this sleep pattern, I can't join in anything in the evening, I have almost fallen asleep driving home, not safe.

Do some research on the sympathetic nervous system, I will too and let's see what we come up with. This a guess, but that is what the doctors do, they make there best guess after ruling out. I would not rule out thyroid yet. I don't know how you or even I can get tested for more than the TSH. Will look into it. You take care, I do understand now how all the meds were introduced to help you, I have been there with over 14 surgeries for lumbar, thoracic and cervical. Pain pump for awhile I needed other drugs to keep me from getting sick, one was a mood stablizer, I have been on up to 14 or 15 meds all at once. Mine have gone up to about 9 or 10. Some are because of my age, 56, blood pressure med, thyroid med, diuretic with potassium, reflux med and all the others are for pain, got 5 of those, so I know how they accumulate. Tegretol is not an easy drug to tolerate so I will know in a month if I can even take it, and if I am not getting a good response then it will get booted out, there are other drugs to try, can't take lyrica, cymbalta or celebrex or high doses of gabapentin. All cause more swelling or kidney failure so I have to be careful, even the tegretol can cause a kidney failure I have had in the past so blood work will be done this month. I will do some googling and check some posts for this thyroid thing, I haven't yet but will. I hope you can start to sleep soon, it is very important to be able to do that, your body is not rested, your pain is even more difficult to manage. God Bless You, Sharon.
Natalia said:


Thank you for your info , it makes a lot of sense to me. I also am 56 years old. I was originally diagnosed by my G.P. and given nothing. Just told to wait for an urgent MRI which would be 3 weeks. 3 months later I had no letter and was so ill I thought I was going to die-and I am not a dramatic person.. I was always brought up to grin and bear it and do not argue with the doctor but I was so bad that my husband rang my cousin.s husband who is a nuerologist at 3.a.m. He was brilliant. He was so angry that I had been left like that and said if anyone is referred to him with a diagnosis of T.N. or a possibility of it he would see them that day. the reason I am telling all this is to explain why I am on so much medication. IThe whole thing had been left for so long that I was projectile vomiting ove r the poor guy and could not speak. Had been drinkin stock thru a straw for 8 weeks.so I needed an emergency intravenous 1000 mg of phenytoin to put me out of some misery and this was reduced to 300 the next day.Thus I started with tegretol and Phenytoin. Could not tolerate tegretol though remained on it and was put on baclofen with a view to reducing tegretol and am now off tegretol completely. I am now reducing Phenytoin as they wanted to bring that down and eventually off. Next week I find out what needs to be added to the baclofen what replaces phenytoin. All of this is being monitored and I can go to hospital the minute the pain gets worse . This has been happening this week and I am going to Neurology to day,as it is time. They explain everything and having stabalised me over these months are now trying to find a more 'liveable' dosage.. I am nearly there I think. It is hard as I am still not getting sleep because of the sweating. Having ruled out thyroid last week, and given me HRT for the last 3 mths it is actually getting worse. The HRT was a long shot as I had been thru all that 10 years ago and it did not feel like this at all. Anyway they say that they will now giving something to help the sweating having ruled all these out.Here.s hoping I get some sleep soon. It is all a mess and very complicated for them as when I went for the nerve blocks they found an abcess on my jaw bone which was complicating all the symptoms for them. Sorry to ramble on. It has been a long road of mishaps and mess but I am in good hands at hospital .Wish I could say the same of my G.P and dentist who if both had done their jobs in the first place would not have left me in the state I was in.Very very angry with them.Lets hope this starting again with the meds works.Regards and hope you are feeling better yourself. .Just seen your post. My thyroid results came back normal twice, should I still push for the natural med??


Granny said:

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


Natalia, the natural medication is called Armour Thyroid, just google it, and you will find a site that allows you to contact the company that makes it, lot's of over the counter products but not as effective, I sent an email for info, I can always post it to you, or download it and mail it to you. Must never give up, there are answers out there, you are in the right place to find them. Sharon
Granny said:


Hello Natalia, you have been through the mill, so sorry, been there myself with a crippling type of back surgery. Now this, I have a suspicion your sweating may be coming from a sympathetic nerve condition or another woman has posted just because your results for TSH that they test come back normal does not mean you have a normal thyroid. I now know and she has a sight posted to go to, I will look her post up, there are 12 other substances that are not checked for a normal thyroid and there is a medication that is not synthetic that will address all of this. Don't know if they are hormonal substances that the thyroid needs. So I hate being cold, yet I still sweat, not like you, but I live in Florida, my hold head and scalp sweat, my hair is short but still gets drenched with sweat. This is one of the conditions of hyro-thyroid, the sweating that is not controlled, my internist changed my thyroid med from generic to brand name but it did not help me so I went back to the generic, expensive copay. I think this natural medication is expensive but I am going to find out what it is, if the tegretol helps me it can reduce the effect of the thyroid medication, my TSH needs to be checked.

I am glad you get to go to the hospital when it gets so bad and they treat you for this overwhelming pain, yes, just knock me out for awhile. I do know this for me, a good sleep breaks the pain cycle. I can sleep, but I sleep at a different time of the day and am an early am riser and down at 1pm, I start to fall asleep about 4pm and sleep until 1am or 2am. The time change is happening this weekend which means I will be up an hour earlier. I hate this sleep pattern, I can't join in anything in the evening, I have almost fallen asleep driving home, not safe.

Do some research on the sympathetic nervous system, I will too and let's see what we come up with. This a guess, but that is what the doctors do, they make there best guess after ruling out. I would not rule out thyroid yet. I don't know how you or even I can get tested for more than the TSH. Will look into it. You take care, I do understand now how all the meds were introduced to help you, I have been there with over 14 surgeries for lumbar, thoracic and cervical. Pain pump for awhile I needed other drugs to keep me from getting sick, one was a mood stablizer, I have been on up to 14 or 15 meds all at once. Mine have gone up to about 9 or 10. Some are because of my age, 56, blood pressure med, thyroid med, diuretic with potassium, reflux med and all the others are for pain, got 5 of those, so I know how they accumulate. Tegretol is not an easy drug to tolerate so I will know in a month if I can even take it, and if I am not getting a good response then it will get booted out, there are other drugs to try, can't take lyrica, cymbalta or celebrex or high doses of gabapentin. All cause more swelling or kidney failure so I have to be careful, even the tegretol can cause a kidney failure I have had in the past so blood work will be done this month. I will do some googling and check some posts for this thyroid thing, I haven't yet but will. I hope you can start to sleep soon, it is very important to be able to do that, your body is not rested, your pain is even more difficult to manage. God Bless You, Sharon.
Natalia said:


Thank you for your info , it makes a lot of sense to me. I also am 56 years old. I was originally diagnosed by my G.P. and given nothing. Just told to wait for an urgent MRI which would be 3 weeks. 3 months later I had no letter and was so ill I thought I was going to die-and I am not a dramatic person.. I was always brought up to grin and bear it and do not argue with the doctor but I was so bad that my husband rang my cousin.s husband who is a nuerologist at 3.a.m. He was brilliant. He was so angry that I had been left like that and said if anyone is referred to him with a diagnosis of T.N. or a possibility of it he would see them that day. the reason I am telling all this is to explain why I am on so much medication. IThe whole thing had been left for so long that I was projectile vomiting ove r the poor guy and could not speak. Had been drinkin stock thru a straw for 8 weeks.so I needed an emergency intravenous 1000 mg of phenytoin to put me out of some misery and this was reduced to 300 the next day.Thus I started with tegretol and Phenytoin. Could not tolerate tegretol though remained on it and was put on baclofen with a view to reducing tegretol and am now off tegretol completely. I am now reducing Phenytoin as they wanted to bring that down and eventually off. Next week I find out what needs to be added to the baclofen what replaces phenytoin. All of this is being monitored and I can go to hospital the minute the pain gets worse . This has been happening this week and I am going to Neurology to day,as it is time. They explain everything and having stabalised me over these months are now trying to find a more 'liveable' dosage.. I am nearly there I think. It is hard as I am still not getting sleep because of the sweating. Having ruled out thyroid last week, and given me HRT for the last 3 mths it is actually getting worse. The HRT was a long shot as I had been thru all that 10 years ago and it did not feel like this at all. Anyway they say that they will now giving something to help the sweating having ruled all these out.Here.s hoping I get some sleep soon. It is all a mess and very complicated for them as when I went for the nerve blocks they found an abcess on my jaw bone which was complicating all the symptoms for them. Sorry to ramble on. It has been a long road of mishaps and mess but I am in good hands at hospital .Wish I could say the same of my G.P and dentist who if both had done their jobs in the first place would not have left me in the state I was in.Very very angry with them.Lets hope this starting again with the meds works.Regards and hope you are feeling better yourself. .Just seen your post. My thyroid results came back normal twice, should I still push for the natural med??


Granny said:

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

Hi Natalia, there is a condition called, Hyper Hydrosis. (Excessive sweating). I had this before I got TN, but prior to that, I did not sweat at all, or hardly. I would not even have to put deodorant on! Now I’m okay again. I am not pre menopausal. I know that this can be a very distressing thing to cope with. There is a surgery, that can be done, that snips the nerve, causing it. You can also have Botox injected to give some relief for a mater of months. But then again, this is just what I know & I am not a doctor. Maybe you could google the condition. My TN meds don’t seen to make me sweat. But, i know if you are having withdrawal symptoms to opiods etc, you can have increased sweating.But who knows, we are all different & I’m sure your sick of being told ‘oh, it’s just hormones’, when its something that affects your quality of life. I hope you finally get this sorted! Kindest regards Sally

P.s. The nerve is in your back. It was pioneered by two surgeons in Melbourne, Australia. That was about 10 years ago. Oh, and I’m not sure if they snip the nerve or put a little surgical clip on, so it can be reversed? I’m not sure if this info helps, as I don’t know where you are specifically sweating? But we are girls & we don’t want this! So I’m wishing you the best & I’m casting a little spell for Natalia tonight! God bless u sweetie ((Hugs))

I’m on Tegretol, but it’s not making me sweat. But I do have night sweats. With your shoulder, you may just have pinched nerve. A good doctor should be able to locate it by feel. It can be pin pointed & manipulated to give you some relief. A good Doctor to see, is a Muscular Skelleto Doc. Also, if you use heat packs at night, should help you sleep. I was taking sleeping tabs, but still having restless sleep & not much of it! Sleep deprevation can really exsaserbate many symptoms. My Doctor has put me on a Drug called Seroquor or Quieptime? I don’t know how to spell it & I’m in bed & just can’t get up to look! Sorry. But it is a drug used for post traumatic Stress disorder & I just sleep all night.

Those are good ideas to look into, I found that condition under the sympathetic nervous system not working properly, meds and surgery depending on the type of sweating. Natalia you should look into some of this, and I can't say for sure it is thyroid because your TSH is normal, I don't know if they check for other abnormal findings. Best to you. Sharon

I also had the sweats with tegretol. I know that was it, because I am now off of it, and it is completely out of my system, and no more sweats. I woke up one night and it sounded like the base drum player from the school band was standing next to my bed. My headache was so bad, and my BP was 170/110. I do not normally have BP problems either.

It took me a while to put it on the tegretol, because it didn't start until I had been on it a little while.

Good luck

Thanks I have been drinking carrot juice everyday since tge age of 5. My grandmother having one of the first juicing machines I have ever seen. In fact it has not changed much, just not metal now but still comes apart and cleans the same way. She educated me on all veg and fruit benefits and I know to drink celery as an antioxidant, Beet juice I love and I add parsley a lot and ginger. I mix to suit my taste. I use a tens machine and have had acupunture on and off for 25 years. Did not believe in tablets unless necessary until this happened.. I have not had a head cold on 17 years and I put this down to diet. However I think I would drink cyanide when the pain is bad, so for the moment am hoping they can help me. Still downing the juices. Thanks Noeleen

jacob said:

hi natalia welcome ... i know homeopath is kinda like whatever but try wheatgrass and vitamin c .to keep .system stable ...heres to a healthy you

Thanks have weaned off the tegretol and there was an improvement on how many times it was happenning. 30 a day around 3,or 4 mins eachHowever reducing phenytoin by 100 a week for 2 weeks and they are 100's a day again, so I agree with you,I think it is withdrawal to the tablets is putting it up again. I see my neurologist next week so am keeping a log. Problem is my writing is so bad with the head pain and shaking that I cannot read it. Here's hoping. Regards to you and thanks Nx



Candy said:

I also had the sweats with tegretol. I know that was it, because I am now off of it, and it is completely out of my system, and no more sweats. I woke up one night and it sounded like the base drum player from the school band was standing next to my bed. My headache was so bad, and my BP was 170/110. I do not normally have BP problems either.

It took me a while to put it on the tegretol, because it didn't start until I had been on it a little while.

Good luck

Good news as the continuous glugging noises in my head have stopped since weaning off tegretol. Probably a silly thing to say but for one day it felt like I had oxygen flowing through my head and the fog lifted.Fog is back but lifts generally in the afternoon around 5 p,m til 7 p,m Weird but not complaining.

No further on with sweats and so cannot play the Andrea Bocelli concert nest week. Do not get paid if I do not work so its a bummer. Just was quite frightened as to how I would have coped with the vibrations from a 90 piece orchestra. However I will have to find out as its my profession.Juat not at the moment.Very down about this. That might be an understatement. How am I going to manage Rod Stewart or George Benson, or just a symphony.Carreer may be over, but thats my problem.

Would be content to feel healthier and get some sleep.The past is the past unless I get some remission. It is good to hear positive stories on this site about that.Thank you all for your info it is really helping a lot.You are angels.

Thanks for all the posts to Natalia, I better watch out for this tegretol, only getting some benefits some of the time, but still on a very low dose, the neurologist is only going to take me to 200 mg. 4 x tops for treatment. If I don't get a good benefit I will come off it and try something else, there are 3 or 4 other meds out that may help. It is very hard to tolerate all of these seizure meds for this type of chronic pain. Does anyone think surgery is an option or some of the other procedures they do to quiet this nerve? I would have to look them up again, but if not surgery I do know some of the procedures to quiet this nerve are only temporary and all invasive procedures may cause more pain. Risky option. Sharon

Many thanks, bad night, am googling it now, as see the neurologist on Wednesday.

Granny said:

Those are good ideas to look into, I found that condition under the sympathetic nervous system not working properly, meds and surgery depending on the type of sweating. Natalia you should look into some of this, and I can't say for sure it is thyroid because your TSH is normal, I don't know if they check for other abnormal findings. Best to you. Sharon

Thank you, I am at hospital on Wednesday and will talk about this. It is a vicious circle with no sleep. Throughout the sweats I have had sweat rashes, 7 mths of them with creams from the chemist when they flare up. Two days now I have felt fluy and nausea and did not ring doc. Apart from my back and T.N. my general health is great and thought I would get over it , but this mornig I found the rash under my breats had spread all over the place and blistered, so I Phoned and on call docter-Saturday of course. Got antibiotics so yet one more added extra might just disappear now. It is not easy being a woman.Will do as you and granny say. All this is sticking an elastoplast over the wound instead of them getting to the bottom of it.If I find a miracle cure will let everyone that has helped me so much know.



Sally said:

I'm on Tegretol, but it's not making me sweat. But I do have night sweats. With your shoulder, you may just have pinched nerve. A good doctor should be able to locate it by feel. It can be pin pointed & manipulated to give you some relief. A good Doctor to see, is a Muscular Skelleto Doc. Also, if you use heat packs at night, should help you sleep. I was taking sleeping tabs, but still having restless sleep & not much of it! Sleep deprevation can really exsaserbate many symptoms. My Doctor has put me on a Drug called Seroquor or Quieptime? I don't know how to spell it & I'm in bed & just can't get up to look! Sorry. But it is a drug used for post traumatic Stress disorder & I just sleep all night.


Hello Jacob, I like your plan, all I do is try to do all the good things for my health, just increasing my life span and this thing is not terminal so yeah maybe today I will have a fried fish or chicken sandwich with lots of cheese and fries, nice and soft to chew, can't chew steak, I don't juice but I eat a lot of fruit and very cut up salad drenched in fat free dressing. Oh, yeah, also since I am getting old I do drink those ensures for protein. I have family, uncles and aunts living well into their 80's, I am 56, HELP, will I live that long with all this pain, I will die a natural death...my husband chose suicide with a gun so my kids need me no matter what condition I am in, so on we go, one hour at a time sometimes, the sun sets and rises again, so we must go on. This is by far the most helpful support group I have ever come across, everyone seems so darn intelligent, are we type A personalities, just checking, I think I am....Sharon
jacob said:

i would pick up cigarettes for a counter weight ...cloves or organic tobacco ...tequilla or shots of jagermiester .eat steak ..and deviled eggs ...and drink tons of carrot juice..bless your heart natalia ...in a matter of days you'll get back to normal ..

I noticed the same thing, everyone on here is highly intelligent and type A, sometimes I wonder if that has anything to do with having TN...but that makes it actually harder to accept then...why would so many smart hard working people get this,,i dont even want to concider that.

Granny , I am so sorry what you have been through.. i cannot imagine, but I can tell you are strong, so this wont get you down, you are a survivor!

Wendy

Granny said:


Hello Jacob, I like your plan, all I do is try to do all the good things for my health, just increasing my life span and this thing is not terminal so yeah maybe today I will have a fried fish or chicken sandwich with lots of cheese and fries, nice and soft to chew, can't chew steak, I don't juice but I eat a lot of fruit and very cut up salad drenched in fat free dressing. Oh, yeah, also since I am getting old I do drink those ensures for protein. I have family, uncles and aunts living well into their 80's, I am 56, HELP, will I live that long with all this pain, I will die a natural death...my husband chose suicide with a gun so my kids need me no matter what condition I am in, so on we go, one hour at a time sometimes, the sun sets and rises again, so we must go on. This is by far the most helpful support group I have ever come across, everyone seems so darn intelligent, are we type A personalities, just checking, I think I am....Sharon
jacob said:

i would pick up cigarettes for a counter weight ...cloves or organic tobacco ...tequilla or shots of jagermiester .eat steak ..and deviled eggs ...and drink tons of carrot juice..bless your heart natalia ...in a matter of days you'll get back to normal ..

What a great reply. Sounds like the old me, apart from the smoking and eggs. God I miss my Jamesons, the orchestra bus , the after show parties and a good old lock in wi music and craic. For anyone not from Ireland, a lock in is when the pub closes but bar stays open for a jam session and some craic [banter] It is confusing to tourists when the sign outside the pub says" music and craic nightly" Yes it is against the law [ unless the law is joining you!!]Thank you Jacob for cheering me up.

jacob said:

i would pick up cigarettes for a counter weight ...cloves or organic tobacco ...tequilla or shots of jagermiester .eat steak ..and deviled eggs ...and drink tons of carrot juice..bless your heart natalia ...in a matter of days you'll get back to normal ..