For me, tegretol (forgot how much I took) not only made me sleepy but interacted with a hypothyroid medication (causing it to clear from bloodstream quicker) which made me more tired, and weight gain happened due to reduced thyroid activity and lack of physical activity. I was on a roller coaster of upping the thyroid meds, too much of which makes you tired too, it was a mess. So I switched to oxcarbazepine (trileptal) which supposedly had less interaction with thyroid medication. However, after each remission, I had to take a higher dosage of trileptal till I was eventually up to 2400 mg daily. It would wear off after 5 hours and I'd be jumpy, irritable and in pain again. Complex tasks (my whole job!) were awfully frustrating, forgetfulness was rampant, wrong words came out, and yes, break through pain too. Mornings were the worst, after wearing off over night, and it seemed to take hours to work, and I'd have to take it an hour after taking thyroid meds. on an empty stomach. When the pain started to subside and I'd cut back, it would take me months to reduce it and the edginess was making me an awful person at work. And then pain returned, so I'd started up again. (Had a successful MVD last month, and am now off oxcarbazepine).
Wishing you success finding the right combination.
Hello folks: I used to take Tegretol at 1200 mg/day and had no side effects with it for several years and it completely took away my TN pain. BUT after a few years my bloodwork came back with indications of neutropenia so my doc switched me off to other other meds. Just this year my TN flared up very badly and I had to go to Mayo and am now on 120 mg/day Cymbalta, 400 mg/day Topamax, & 225 mg/day Lamictal in order to be pain free, with occasional pain breakthrough. The surprising thing that I have noticed is that CAFFEINE is the thing that really pushes me over the edge into a pain problem. So I have eliminated all caffeine products from my diet: colas, teas, etc. Also any stressful situation that affects my usually very low blood pressure to rise causes the pain to flare up. The docs say the caffeine thing makes perfect sense because it stimulates the CNS, which works against all the TN meds which work by tamping down the CNS. But in direct answer to the question, on the list of "rare side effects for Tegretol" is "rapid weight gain."
I also was allergic to Tegretol and contracted Stephens-Johnson syndrome as a result of Tegretol use. I also had mouth sores from the chewable tabs. I agree that the weight gain is probably related to the water weight gain and less physical activity-a low dose diuretic may be helpful. Often I will be afraid to work out too hard worrying that increasing my blood flow will cause the TN to flare. I also had the MVD surgery in Sept. and had a CSF leak that slowed my recovery. I still have TN shocks to my face and am on gabapentin 400mg 4x/day. I also was told to wait at least 3 months to see if the nerve healed but it looks like I will have to stay on the meds as well-I'm going to ask my doctor to prescribe me Lyrica to see if that helps.
Thank u so much guys...i guess i am lazy enough to blame the medicine for weight gain rather than actually doing a bit more physical exercise..i had my mvd exactly 2 weeks back and i am asked to take the tegretol for 3 more months..i have this vision problem which my NS acknowledged as the side effect of tegretol but not the weight gain... Thanks
Swayambhu
Prayers and Blessings to you Mr Mishra - this TN thing hits us all very hard and in different, unpredictable ways (even changing for each person over time). And nobody can understand it until it happens to them or to a person they love. I had never even heard of it until it happened to me.
I just ramped up the Topamax this year from 50 mg/day to 400mg/day and hoped that a side effect might be weight loss (it is also prescribed for obesity). But no such luck! I think with TN, we are all afraid to move very much, since TN makes us so sensitive and fearful of stirring things up. So don't get too down on yourself or call yourself lazy - it is wise to be cautious.
Hi gals and guys....I have GN and just switched off Tegretol to Amitriptylin. I was having serious balance issues with the 400mgs in am and 400mgs in eve. Now taking 25mg of the amitriptylin 3 times a day with the dizziness and balance issues greatly reduced. I also take 800 Gabapentin 4 times a day. Have not noticed weight issues with these meds and I get weighed by doctors every 2 weeks.
I have been turned down for MVD and am now trying to gain the upper hand on my GN with P-Stim implants. My breakthrough pain handled with 10/650 Lorcet is becoming less frequent. I take 80 mg of oxycontin and this alone has been keeping me pretty pain free since starting the P-stim implants.
I had Gamma Knife surgery back in April with no noticeable improvements. This as well will not be repeated.
I will have to stay on whatever meds keep the pain away if the implants fail. I go for treatment #4 next week. I can have as many as 15 treatments before they stop the p-stim and throw up their hands I guess. Geniculate Neuralgia is just too unknown...Dr. Z is trying her best to gain the upper hand but truth is that there is just too little known on how to affect that nerve without causing deafness or paralysis. No doctor wants to have that on their success/fail report no matter how much you and your family beg. Trust me.
Originally I was put on the Tegretol for TN to help me sleep (I don't) and to affect some change in the nerve response to pain. It did help me get a bit of rest in the beginning but now that I've been on it for almost a year, my sleeping patterns are in the negative again.
I suffer with fibromyalgia and it has been my experience...medications lose their effectiveness after a while or a higher dose is required to get the effect desired.
I've had weight issues with Lyrica, gained 30# while on it.. Also noted...Taking Fish Oil supplements twice a day led to weight loss...steady weight loss.
Hope you get a handle on your meds. It's a constant battle for me, try to get off one, then go on another. Oh for the day I just have to take vitamins!
I am currently on 700-900 of Tegratol, 300 Pregabalin and 50mg Amatriptaline. I was originally on 300mg of Tegratol and have only recently been prescribed the Pregabalin. I noticed an increase of 6kg in my body weight when I had to increase the Tegratol.
It is listed as a potential side effect but like all medications it affects different people in different ways.
Take care friend.
Mark
I was on this for 10 months before my surgery and gained about 60 lbs.....Happy to say that it will be a year on the 12th of this month since I had surgery and I am doing GREAT !!!!!! Pain is about zero.....I have lost all the weight too.....This is one very BLESSED girl !!!! I pray for all my T.N. friends daily.....
By the way I am a postman and I walk 8-10miles a day. Physical exercise seems to have little effect, unless you are prepared to hit the gym very hard. I don’t have the energy for that (yet another side effect)
Take care friend.
I started on Tegretol and I had a rash so that was out. I now take Gabapentin and have done for 4 years now but on a low dose of 600 mg a day. I am pretty sensitive to all the meds out there. Before TN I was being treated for osteoarthritis and fibromyalgia and felt like a guinea pig, I hated it, none helped the pain so I now refuse any other daily meds ( I have flexeril a muscle relaxant and T3's on hand to take as needed) my last Dr. appt. went well where he didn't push it. Yeah finally!!
Everyone is different and there's always a list of possible side effects with any drug even the natural ones.
The only way to know is to try but I would strongly suggest that you weigh all pros and cons. Depending on how much weight you've gained compared to how well it's working against your pain should be your measuring stick, I think.
I've gained weight but there are other factors at play here, first I'm older, second I'm not as active due to other pain issues that will set off the TMJ and then the TN. Oh well! It's a price to pay...
I wish you all the best in finding what works best for you!!
I did not find that I gained weight, but I am thirsty all the time - to the point where my throat hurts if I'm not drinking water or some other beverage. I recommend cutting out sugar though, it can help with inflammation. My doctor said that the inflammation can help exacerbate the symptoms of TN. So if cutting out sugar, or at least decreasing your intake is an option it may help with both weight and TN symptoms. Best to you in your journey.
I will tell you only how it affected me. Yes, there was some weight gain. I started out with 100mg. As years progressed the dosage went up then down, kind of like a yoyo. Almost 3 years ago I began to have break-throughs and increased meds did not help. Doctor refused to increase my Tegretol for health reasons. I had a ballon compression on the TN. I have had no meds since then and lost the few pounds I gained. So, yes you will gain a little, but to be pain free for me was worth the few pounds. Just wanted to share with you a little feedback. Have a super day.
Kayron
Good to know Beth, I use more honey now for immunity and overall better option. I have a lot of inflammation problems and I do still use sugar in my coffee but I didn't know it could aggravate inflammation. Thanks.
The blog post I put up about smoothies is also good for loosing weight and also is green tea.
With my foggy brain I don't even know if I did the "blog post" correctly, lol.
All the best,
Cheryl
Beth said:
I did not find that I gained weight, but I am thirsty all the time - to the point where my throat hurts if I'm not drinking water or some other beverage. I recommend cutting out sugar though, it can help with inflammation. My doctor said that the inflammation can help exacerbate the symptoms of TN. So if cutting out sugar, or at least decreasing your intake is an option it may help with both weight and TN symptoms. Best to you in your journey.
No meds would be like a dream come true!! :) Kayron D. Huff said:
I will tell you only how it affected me. Yes, there was some weight gain. I started out with 100mg. As years progressed the dosage went up then down, kind of like a yoyo. Almost 3 years ago I began to have break-throughs and increased meds did not help. Doctor refused to increase my Tegretol for health reasons. I had a ballon compression on the TN. I have had no meds since then and lost the few pounds I gained. So, yes you will gain a little, but to be pain free for me was worth the few pounds. Just wanted to share with you a little feedback. Have a super day. Kayron
I certainly do know the side effects! Two years ago I started at 100mg.Tegretol twice a day. The neurologist sent me off to Florida (we live in NY) with a breezy "Titrate it up and get a blood test now and then." "How often and how high?" I asked. He smiled,"Whenever you think it's a good idea. Bye bye!" I titrated up to 100 mg. 3x a day, was dizzy and started hiccupping, then vomited and decided I ought to go to the ER. On the way out our back door I leaned over to call the dog and kept on going until I hit my head on the brick walk. My husband heard the "thwack" inside the house. At the ER the doctor said my sodium was dangerously low, a side effect of Tegretol. For supper in the ER somebody ordered me a salt-free diet, fit for a cardiac patient. I told the nurse I was low on sodium and ought to have an appropriate dinner. Her answer was,"Tell your husband to bring a salt shaker."
Now a different doctor has told me to start at 100 mg. Tegretol a day and she has given me a standing order for a sodium level test. It's not doing much good. After two months I am titrating up to .025 mg. (1/4 of 100 gm.) I had a test at first once a week and now about every two weeks. Good luck! Dorsey
Crazy! Good thing your husband was at home. I think it was Lyrica that I was feeling so stoned that I almost fell out of a chair. These drugs can be very bad for some people!! That's why they say stuff like, don't drive etc. until you know how it affects you.
Glad to hear that you were ok, it could have been deadly!
Dorsey Salerno said:
I certainly do know the side effects! Two years ago I started at 100mg.Tegretol twice a day. The neurologist sent me off to Florida (we live in NY) with a breezy "Titrate it up and get a blood test now and then." "How often and how high?" I asked. He smiled,"Whenever you think it's a good idea. Bye bye!" I titrated up to 100 mg. 3x a day, was dizzy and started hiccupping, then vomited and decided I ought to go to the ER. On the way out our back door I leaned over to call the dog and kept on going until I hit my head on the brick walk. My husband heard the "thwack" inside the house. At the ER the doctor said my sodium was dangerously low, a side effect of Tegretol. For supper in the ER somebody ordered me a salt-free diet, fit for a cardiac patient. I told the nurse I was low on sodium and ought to have an appropriate dinner. Her answer was,"Tell your husband to bring a salt shaker."
Now a different doctor has told me to start at 100 mg. Tegretol a day and she has given me a standing order for a sodium level test. It's not doing much good. After two months I am titrating up to .025 mg. (1/4 of 100 gm.) I had a test at first once a week and now about every two weeks. Good luck! Dorsey
I started off on the same dosage of Tegretol. The side effects I had was that I was lethargic and tired ALL the time. My doctor halved my dosage and I am back to "as normal" as we can be. I did not have a problem with gaining weight but I do not loose any weight either and since TN I have become more body health conscience.
When pain gets really bad I add Larika as painkiller. I also have a 175mg anti depressant which is working well for neuro pains.
We all seem to "play around" until we find what is working for us individually the best. I hope you get to work out your best medication option because it does make life better.
I certainly do know the side effects! Two years ago I started at 100mg.Tegretol twice a day. The neurologist sent me off to Florida (we live in NY) with a breezy "Titrate it up and get a blood test now and then." "How often and how high?" I asked. He smiled,"Whenever you think it's a good idea. Bye bye!" I titrated up to 100 mg. 3x a day, was dizzy and started hiccupping, then vomited and decided I ought to go to the ER. On the way out our back door I leaned over to call the dog and kept on going until I hit my head on the brick walk. My husband heard the "thwack" inside the house. At the ER the doctor said my sodium was dangerously low, a side effect of Tegretol. For supper in the ER somebody ordered me a salt-free diet, fit for a cardiac patient. I told the nurse I was low on sodium and ought to have an appropriate dinner. Her answer was,"Tell your husband to bring a salt shaker."
Now a different doctor has told me to start at 100 mg. Tegretol a day and she has given me a standing order for a sodium level test. It's not doing much good. After two months I am titrating up to .025 mg. (1/4 of 100 gm.) I had a test at first once a week and now about every two weeks. Good luck! Dorsey
Forgot about the low serum sodium side effect (on Trileptal, close cousin to tegretol), only slightly low in test results range, but substantial for me. Had tests every 3 months, with off and on dizziness, banging into walls. In the hospital for MVD, I was given sodium tablets which made me nauseous unless I quickly swallowed them in pudding or applesauce. No longer taking trileptal and sodium is fine.