Tegretol: How long do side effects last on dose increase? How often do I need blood work?

Hi All.

My name is Johanna. I started taking Tegretol XR (Carbamazepine XR) about 4 months ago. I just increased my dose (7 days ago) by 200 mg and have been in a stupor, sick to my stomach, emotional and having nightmares. I know the above side effects are common. How long do they last?? Do you get used to them? I am only taking 600 mg. right now as I take another anti-seizure med in addition to Tegretol. My neurologist told me to decrease my dose to alleviate the side effects. That was incredibly disappointing to me as I am taking this medication so I can feel better. I had a little improvement on the lower dose but as the weather has gotten colder my pain has increased, thus a med increase.

How often do you have your blood work done? What is the recommended blood panel schedule when on Tegretol? I am asking this question as my neurologist has not ordered one yet, I called to ask yesterday and they said to wait until I stabalize on the dose I am on. That seems kind of crazy to me as I have been on the medication for 3 months and regardless of the dose, I think that the dosage of a medication should not affect whether or not I need to have my blood work done?

Am thinking that I may have a ding-dong for a neurologist?

Thanks for your reponses! Take care. Johanna

I don't think there is a widely accepted medical consensus on frequency of blood work, Johanna. But from what I read, a liver panel is appropriate when patient is first started on Tegretol, and again within 90 days, after the dose levels have been tapered up to the intended stabalization range. Thereafter, every 90 to 180 days seems fairly common. Ask your doctor to explain indications for toxic reaction to this medication, as well.

As far as getting over side effects from dose increase -- a rule of thumb I've heard offered is two to four weeks, if you're going to acclimate or improve. I can't swear that all patients do that rapidly. There is no one size fits all rule in a lot of these things. I can only suggest that you hang in there. If side effects continue to be unacceptable, then Trileptal or Neurontin may be better alternatives to Tegretol. What is your other anti-seizure med, and has your doc checked for interactions between it and Teg?

Regards,Red

Red-

I am currently taking Lamictal (600 mg) in addition to the Tegretol. All of my medications interact; serotonin syndrome... I have also noticed that if I take them together the side effects are worse, so I have a rigourous medication schedule which involves not taking any meds together. I also take: trazodone, clonazepam (very infrequently- break-through pain & anxiety), MS Contin, Oxycodone (break-through pain).

I have already burned out on Neurontin & Trileptal... bummer. They worked for a while then break-through pain became regular and consistent so I changed meds to Lamictal about 8 months ago. It worked pretty well for a while and has continued to do so, somewhat, but decided to add on the Tegretol to see if I would have any benefit from it.

I'll hang in there! I don't want to just give up and am really irritated with my neurologist for offering that as the solution to my side effects. I, too, was also under the impression that side effects could last some time. I mostly want to make sure what I am experiencing is within the realm of normal when I phoned my neurologist.

Thanks for your response! I feel a little better now. Take care. Johanna

Richard A. "Red" Lawhern said:

I don't think there is a widely accepted medical consensus on frequency of blood work, Johanna. But from what I read, a liver panel is appropriate when patient is first started on Tegretol, and again within 90 days, after the dose levels have been tapered up to the intended stabalization range. Thereafter, every 90 to 180 days seems fairly common. Ask your doctor to explain indications for toxic reaction to this medication, as well.

As far as getting over side effects from dose increase -- a rule of thumb I've heard offered is two to four weeks, if you're going to acclimate or improve. I can't swear that all patients do that rapidly. There is no one size fits all rule in a lot of these things. I can only suggest that you hang in there. If side effects continue to be unacceptable, then Trileptal or Neurontin may be better alternatives to Tegretol. What is your other anti-seizure med, and has your doc checked for interactions between it and Teg?

Regards,Red

Hi Joanna

I take Teg and it was a nightmare for me to start with, it felt like chemo to me. Then gradually after about 6 weeks I gained back my life somewhere near the level it had been before. I don’t have the inner well being I felt on Gabapentin but as it helps so much I can put up with the side effects.



All the best, Jackie

THANK YOU, THANK YOU, Jackie! I really appreciate your response. It is definitely hope inspiring! I am glad to hear you were able to overcome the side effects. Do you take the extended release Tegretol tab? What dose are you on?

It's also encouraging to hear that it works for you! I think I have had some benefit from it so far but increased my dose as my pain has been steadily getting worse due to the cold weather and frequent weather changes here in the Pacific Northwest.

Thanks for your help! Take care. Johanna

Jackie said:

Hi Joanna
I take Teg and it was a nightmare for me to start with, it felt like chemo to me. Then gradually after about 6 weeks I gained back my life somewhere near the level it had been before. I don't have the inner well being I felt on Gabapentin but as it helps so much I can put up with the side effects.

All the best, Jackie

Hi Johanna,

I am on Tegretol as well. I am currently taking 400 mg per day. My doc says to take it exactly 12 hours apart to cut down on the side effects (or exactly eight hours apart if I need to go up to 600 mg per day). I also have to get bloodwork every 6 months. When I first started back on the medication, my doctor waited two to three weeks for the first bloodwork.

Hope things get better quickly!

Stefanie

Thanks for the tip Stefanie! Do you take two pills together? I take 600 mg and can go up to 800 mg. My instructions are to titrate for pain so I have control over what dose I take. I increased from 400 to 600 as my pain level increased rapidly with the cold weather, barometric pressure changes, etc... I currently try to take 3 pills at different times but taking them 8 hours apart is hard. I am taking them at more like 6 hours apart.

Thanks for the note on bloodwork also. I haven't had a second blood draw yet and its been 3 months. I did have a baseline bloodwork done before I began taking Tegretol.

Time for me to request that my GP do my blood panel despite what my neurologist says. By the way, I am switching specialists. Waiting for an appointment at the pain management clinic at the University of Washington in WA state. They have two docs who specialize in TN/ATN (i have ATN). Yipee! Finally.

Thanks for your reply. Take care. Johanna



Stefanie Rice said:

Hi Johanna,

I am on Tegretol as well. I am currently taking 400 mg per day. My doc says to take it exactly 12 hours apart to cut down on the side effects (or exactly eight hours apart if I need to go up to 600 mg per day). I also have to get bloodwork every 6 months. When I first started back on the medication, my doctor waited two to three weeks for the first bloodwork.

Hope things get better quickly!

Stefanie

Hi Johanna! My first TN meds this past Aug/Sept were Tegretol and I started with 200mg a day. I will never forget how I felt the first 2 weeks. Very loopy. I had strange and intense dreams but also became very unorganized and forgetful. As weeks went on I still had pain so my doc told me to
Increase 100mg per week. I made it up to 600mg a day and still had some of the worst flare ups I’ve had. My doc said at 600mg a day I shouldn’t have had bad flare ups that basically paralyzed me. He weaned me off Tegretol while he had me start Lyrica. I’m about a week into
My 300mg a day of that and so far so good. I look back at the last few months and now I see just how bad my side effects were. I was a zombie! Good luck with everything.

I first started taken Tegretol in 2002 and thank goodness no side effects. Then I had to take extra as the pain was awful. I then had a bad day and my husband took me to the hospital and they injected into my nose, it was so funny as my face drop on my right hand side. Anyhow it came back okay and for the next 3 years I had no pain at all, i could not belive it. But alas in 2009 it came back and I still had some Tegretol left and I remember all I did was sleep, they made me so tired. Then they tried me on Gapapentine( not sure if I spelt that correct and too laze to get up to check.) Anyhow for 2 years all I did was sleep because of the tablets and I hated it as I could not work. I have trouble with the maxillary branch (V2) Which runs through the upper teeth, gums, lips, cheek, and side of the nose. Well I think it is that one as most of the pain is there. Anyhow heard about CRYOTHERAPY, so decided to go for it. It is the thrapeutic use of extreme cold. Low temperatures passed through a probe can be used to selectively destory tissue. Well you should have seen my face after the operation, looks as if someone beat me up. But 5 months of no pain and I got a job at last. But alsas it is back and the second operation did not work. So I take Tegretol and Gapatine together. But I take it my way and so far I am coping. They are thinking of cuting the nerve but I really think I should stay on the medication as long as I can. Strange I have never had a blood test, not sure why. Well as you see medication has been okay so far, hope it stays that way.

Fiddle, Severing the nerve is a really REALLY bad idea. I've talked with several patients whose doctors tried that as a last resort and put them into agonizing permanent "deafferentiation" pain as a direct consequence.

Which type of TN do you have? If it's Atypical (Type II) TN which creates long periods of burning, throbbing, achy pain, then recognized drug treatments include some other options such as the tricyclic antidepressant drugs (Amitriptyline, Nortriptyline, others).

Regards and best, Red

Hi Richard

Thank you for that information, I will now not have the nerve cut, thank goodness for this information and so glad I came onto this site its been a eye opening. I do not know what type of TN I have, never been told, did not even know there was diffirent types so ||I will ask about that. Plus never had a blood test. My pain is like having bad tooth ache on the top right of my teeth and shocks . Did get to a state were I could not eat or talk, as when I spoke I got shocks, and eating well could not. Anyhow medication at the moment seems to be helping.

If I do not come on the computer often its just because I work Monday to Friday and by the time I get home I take extra medication so I have a good night sleep. As during the day I only take one of each of my medication just so I can get my work down as I do not want to full a sleep. Ha, ha. It is so great to be back at work even if its only cleaning. Work in a big hanger were they make furniture for planes. I just hope this winter the TN does not get worse as the cold does not help.

thanks again richard. What type of TN do you have .

Fiddle, you may profit from reading our short page on symptoms of TN and ATN. See http://www.livingwithtn.org/page/type-1-and-type-2-atypical-tn. Likewise, there is a 70-page article under the "Facial Pain Info" tab on all of our page menus.

I am not the TN patient in our family. My spouse of 32 years has been managing a bilateral mix of TN and ATN symptoms on Neurontin for the past 16 years. I am the former webmaster and a continuing patient advocate for members here, and those of the US Facial Pain Association, formerly known as the Trigeminal Neuralgia Association.

Regards,

Red

Thanks for your reply Jenn. I am feeling very much the same as you at 600 mg. However, I do think I am having some pain relief. I notice an increase in pain when I don't take 600 mg per day. I sometimes lower my dose in order to be functional for something. Not a great idea as I won't be able to overcome side effects very fast. The next two weeks after Thanksgiving I am going to go back up to 600 mg and stay there. Hopefully, the side effects will abate. I have taken quite a few anti-convulsants. They worked for a year or so then the breakthrough pain became intolerable and I switched meds again. Let me know how it goes with taking Lyrica. I haven't tried it yet. Thank you! Have a happy Turkey Day. Best. Johanna

Jenn said:

Hi Johanna! My first TN meds this past Aug/Sept were Tegretol and I started with 200mg a day. I will never forget how I felt the first 2 weeks. Very loopy. I had strange and intense dreams but also became very unorganized and forgetful. As weeks went on I still had pain so my doc told me to
Increase 100mg per week. I made it up to 600mg a day and still had some of the worst flare ups I've had. My doc said at 600mg a day I shouldn't have had bad flare ups that basically paralyzed me. He weaned me off Tegretol while he had me start Lyrica. I'm about a week into
My 300mg a day of that and so far so good. I look back at the last few months and now I see just how bad my side effects were. I was a zombie! Good luck with everything.

Hi Fiddle.

Thanks for your reply. I, too, was a drowsy tired mess on Gabapentin. I took 2800 mg. at my max dose and was just as non-functional as I was with horrible pain. Eventually, I began to have break-through pain and changed to Trileptal. Trileptal led to the same side effects (tired, memory problems, etc) and yet again only worked for a short time to curb the pain. Like you, I also take two anti-seizure meds: Lamictal & Tegretol. Lamictal has worked best for me and I had absolutely NO side effects. However, it stopped doing the trick in August. I started Tegretol at the time. I also have control over my meds and how I take them. I take my medications at specific times during the day to avoid side effects and to maximize my time awake and functional. I also have the ability to increase or decrease my Tegretol when I choose (I do follow all of the rules regarding increasing and decreasing dosages). Cryotherapy is a treatment that I have never heard of. Interesting. I'm glad it gave you 5 months without pain!

Thanks again for your response! Take care. Johanna


fiddle said

I first started taken Tegretol in 2002 and thank goodness no side effects. Then I had to take extra as the pain was awful. I then had a bad day and my husband took me to the hospital and they injected into my nose, it was so funny as my face drop on my right hand side. Anyhow it came back okay and for the next 3 years I had no pain at all, i could not belive it. But alas in 2009 it came back and I still had some Tegretol left and I remember all I did was sleep, they made me so tired. Then they tried me on Gapapentine( not sure if I spelt that correct and too laze to get up to check.) Anyhow for 2 years all I did was sleep because of the tablets and I hated it as I could not work. I have trouble with the maxillary branch (V2) Which runs through the upper teeth, gums, lips, cheek, and side of the nose. Well I think it is that one as most of the pain is there. Anyhow heard about CRYOTHERAPY, so decided to go for it. It is the thrapeutic use of extreme cold. Low temperatures passed through a probe can be used to selectively destory tissue. Well you should have seen my face after the operation, looks as if someone beat me up. But 5 months of no pain and I got a job at last. But alsas it is back and the second operation did not work. So I take Tegretol and Gapatine together. But I take it my way and so far I am coping. They are thinking of cuting the nerve but I really think I should stay on the medication as long as I can. Strange I have never had a blood test, not sure why. Well as you see medication has been okay so far, hope it stays that way.

Carbamzepine I am surpose to take Two morning night and one midday when reuired, Same with My Gabapentin.

The Carbamzepine are 200 mg and the Gabapentin is 100mg capsules/ Drowsiness is the worse.

So I have changed how I take them. Early in the morning at around 4 oclock I only take 1 200mg , and that keeps me going for work in the morning. Then at 10 I take another Carbamzepine, and at lunch time I take another, so I do not feel like I am going to sleep. Then at 3 - I take Carbamzepine and Gabapentin which helps until I get home at 4. I get a few shock around my teeth but manger until I get home. Then I go to town and take 2 of each, which I take at 7 in the evening and another 2 of each at 10 o clock and that gives me a good night rest. So far its working for me. That is the main think is to keep the TN away. Doctor seems happy with that.