Hi
I want to come off tegretol, I am on 800 now, any one got any ideas of whats best to do without too many withdrawal symptoms? (now use asking my Doc)
Many Thanks
Hi Natalie, I have to say beware! Are you withdrawing from Tegretol to go cold turkey, or whilst introducing other meds at the same time as reducing your dose? In my experience, you really need to be very wary and careful, and reduce as gently as you increased. I wouldn’t reduce more then 100mg each fortnight, unless you feel no pain whatsoever but maybe you could advise your doctor what you are doing even if it’s ‘just for the record’ Good luck,
Liesl
Hi, It was very hard to me to get off Tegretol too! i was taking 800 and started to reduce 200 each week or a little longer. I did feel very anxious by then but after about 2 month I felt so much better! good luck!
I’m serious, did your symptoms re-appear?
Diana Marcela Genther said:
Hi, It was very hard to me to get off Tegretol too! i was taking 800 and started to 200 each week or a little longer. I did feel very anxious by then but after about 2 month I felt so much better! good luck!
Hi Natalie,
You haven’t supplied the ‘why?’, or much else for the question.
I will only supply a ‘whoa’, to titrating meds. We may discuss, you should do research and talk with professionals.
I did the ‘cold turkey’ with Tegretol! I could talk about Tegretol for days. I have pictures.
Take care, bob
Oops…meant to say I’m CURIOUS, not serious. 
(Must be the Tegretol)
Linda Moore said:
I’m serious, did your symptoms re-appear?
Diana Marcela Genther said:Hi, It was very hard to me to get off Tegretol too! i was taking 800 and started to 200 each week or a little longer. I did feel very anxious by then but after about 2 month I felt so much better! good luck!
Hi Guys,
I have Atypical TN, I do not think the Tegretol ever did much for my pain, I have only been on it for 2 months and when I got up to 600mg it still did not do anything. I have started Lyrica over the last 3 weeks and I take Amitriptyline too and feel my pain is better than it was since taking the Lyrica. I am due for an MVD around September and do not want to be taking a drug that does not do much for me (apart from give me bladder problems) want to start reducing it before the OP. When I manage to reduce to 600mg and there is an increase in my pain I will not come off it until after the OP. Believe me my local Doctor is a waste of time, do not even get me started on that! I know I would get more good advice off the people who have withdrawn from it, than her text book. Thanks everybody. Nat xx
Natalie,
When the doc withdrew mine, I was introduced on other meds. Of course at the time, it was during an increased pain episode. So I had to have something. That is when I started neurontin. I also had steroids at the time. How is your pain?
Liz
Hi Liz,
HI my aching pain has got better in the day time since the increase from the Lyrica. Sometimes I have worse nights but nothing has ever taken that away. The tegretol never did anything for my pain at 600mg now Im on 800mg and it still did not do anything so thats why the surgeon said I could up the Lyrica. Im on 700mg of tegretol now, when i reduce to 600mg if I notice an increase in the stabbing pain I will not reduce anymore because I will know its the tegretol that is doing something, but often my pain has been the more throbbing constant aching type, for tegretol often does nothing for anyway, i just do not want to be popping pills that dont do anything. I will still continue with the Lyrica and the Amitriptyline. Dont worry If my pain gets worse I wont be reducing, not until after surgery.
Thanks Liza
Liz K. said:
Natalie,
When the doc withdrew mine, I was introduced on other meds. Of course at the time, it was during an increased pain episode. So I had to have something. That is when I started neurontin. I also had steroids at the time. How is your pain?
Liz
Hi Natalie, (as you know) I’m ATN like you and I’m currently withdrawing Tegretol with my doctors help. As i’ve been doing well on a new medication Topamax so its time to withdraw and i believe the same as you that Tegretol hasn’t done much for me. I do believe that medication is a choice - and i’ve actually been on this path before where i’ve decreased Tegretol myself (and then increased again).
I’m currently on 1200mg and i’m supposed to be decreasing 200mg per fornight but i think that i’ll be extending that period depending on how i feel. 1200mg is really high and i’ve been on this level for over 6months now so i’m definately in no rush, especially as there are risk of seizures if you rush (as i understand it). Also best to get a blood test too to check your Tegretol levels - this should be happening every 3 months.
I will say though that i actually felt my worst side effects with Tegretol at 600-800mg and once i was over that the meds seemed to “kick in” and work for me and relieve the pain alot more.
Anyway, wishing you the best and hope this helps.
Hi Linda, after 5 month off Tegretol sometimes I get a little anxiety but nothing crazy and it might not have anything to do with Tegretol withdrawal. hehehehe serious- curious I confuse words all the time too
Linda Moore said:
I’m serious, did your symptoms re-appear?
Diana Marcela Genther said:Hi, It was very hard to me to get off Tegretol too! i was taking 800 and started to 200 each week or a little longer. I did feel very anxious by then but after about 2 month I felt so much better! good luck!
Hey Bob,
Just wondered what some of your thoughts were? I have explained more now and I am not going completely cold Turkey but just interested in what happened to you?
All my love
Natalie xx
Bob Snodgrass said:
Hi Natalie,
You haven’t supplied the ‘why?’, or much else for the question.
I will only supply a ‘whoa’, to titrating meds. We may discuss, you should do research and talk with professionals.
I did the ‘cold turkey’ with Tegretol! I could talk about Tegretol for days. I have pictures.
Take care, bob
HI James
I wish you the best of luck with withdrawing your meds. I am sticking at my dose for now and will see what happens. I hate taking these meds but what can we do. Let me know how you are doing.
Take care
Nat xx
James Curley said:
Hi Natalie,
I got off of tegretol about 16yrs ago while introducing elazil. All I really remember is that I felt like a zombie. I came off gradually so the zombie period lasted for awhile. I was thinking about that withdrawe because I am currently adjusting my meds-I feel certain for the better. I felt a little strange for two days during the first week but then felt fine. I am getting ready to increase my lamictal to my new maintenance dose this week and furhter come off of seroquel. I have been taking seroquel for my bipolar which lamictal treats as well as TN. If all goes well, and I am optimistic that it will, I will soon be taking only lamictal for my bipolar and potentially it will be the only med I need for ATN. I am currently taking low doses of neurontin and clonazepam along with the lamictal for ATN. When I have completed the adjustment I will post my results. All the best,
James
Hi Natalie,
Sorry it’s taken awhile to reply. My diagnosis was 01/25/2007 and immediately started on Tegretol. 600mg worked for only a few days, I had my neurologist on speed dial, speaking with him every third day. Toward the end of February, I was taking 1,800mg and my pain was mostly controlled.
At that time, I knew I had an itchy red rash, but with little pain, I said nothing.
I worked as an LNA and the Director of Nursing saw my arms, asked me to pull my shirt up…she sent me to the ER.
I had Toxic Epidermal Necrolysis-2nd burns over 60% of my body.
The facial pain diversion was fantastic…my finger tips bled, my skin sloughed off, I even went to the ER to have a shoe removed, not realizing the blood had dried.
I was on cyclosporine for 6 months, an anti rejection med for kidney transplants along with IV Benadryl. I could take no other meds during this time.
Thus the ‘cold turkey’ from Tegretol, my nightmare drug.
I still have residual skin issues. I have a couple of these photos on my profile.
I trust you are well! My best to you and your, bob
Folks, I hate to rain on your parade, but I think somebody should say “WHOA Nellie!” . This med is an anti-seizure med. A too-rapid withdrawal from Tegretol can cause low-grade seizures. You should be advised by a licensed doctor on the appropriate schedule for reducing dose.
I realize that many people have deep-seated objections to meds and their side effects. But another factor should also be addressed in this dilemma. There is emerging research evidence that when facial pain is sustained for long periods of time or allowed to break through after a period of relative success in controlling or managing it, the pain can become PERMANENTLY more difficult to reduce or eliminate over the long term. The evidence and details do not yet appear conclusive. However, papers in literature identify 20 or more bloodstream genetic changes that can occur when pain continues for periods of years – and some of those changes are clearly involved with blood toxins that sensitize the central nervous system to pain stimuli.
So please talk with your prescribing physician before trying to “come off” Tegretol or any other medication prescribed to control or reduce TN pain.
Go in Peace and Power,
Red
HI Bob,
What a nightmare you had with this drug, severe reaction. I hate that we have to take these medications, I wish they would find a cure. I am plodding on, I hope you are well too.
Take Care
Natxx
Bob Snodgrass said:
Hi Natalie,
Sorry it’s taken awhile to reply. My diagnosis was 01/25/2007 and immediately started on Tegretol. 600mg worked for only a few days, I had my neurologist on speed dial, speaking with him every third day. Toward the end of February, I was taking 1,800mg and my pain was mostly controlled.
At that time, I knew I had an itchy red rash, but with little pain, I said nothing.
I worked as an LNA and the Director of Nursing saw my arms, asked me to pull my shirt up…she sent me to the ER.
I had Toxic Epidermal Necrolysis-2nd burns over 60% of my body.
The facial pain diversion was fantastic…my finger tips bled, my skin sloughed off, I even went to the ER to have a shoe removed, not realizing the blood had dried.
I was on cyclosporine for 6 months, an anti rejection med for kidney transplants along with IV Benadryl. I could take no other meds during this time.
Thus the ‘cold turkey’ from Tegretol, my nightmare drug.
I still have residual skin issues. I have a couple of these photos on my profile.
I trust you are well! My best to you and your, bob
Hi Natalie/all,
Thought I’d just update whats been happening with my own Tegretol reduction, I’ve been reducing 200mg per fortnight and I’ve just gone down to 600mg and this last week I’ve had a real increase in pain.
I talked to my Neuro about it - he’s still happy for me to keep continuing the reduction just at a slower pace. I’ve been given an increase in my other medication (Topamax) in order to help with that process.
He said sometimes your body just needs time to adjust after relying on the medication so much and hence, I’ve had this increase in pain - but hopefully it will settle back down (hear that word - hoping ;-).
I’ve also been getting quite emotional lately, when you’re going up and down on meds i think it can put your moods all out of whack, so another good reason to probably take things slowly.
Also, I think James and Richard brought up such valuable points about not rushing off any meds quickly - not just Tegretol - it should definately be a gradual process. And hopefully you have a good doc’ who is receptive and will guide you through that process - if not, change, or get a second opinion. Its your money, your health.
Best of luck to anyone going through this process.
Hi all, I actually just wrote this in another forum but thought that it might be useful here as i have had some benefits using Aspirin for Withdrawel symptoms whilst coming off Tegretol.
I’m now down to 200mg (two weeks to go!) I’ve had highs and lows whilst coming off this med. And I’ve gone up on my Topamax to aleviate some increases in pain these past few weeks (300mgs) and also have Norpress at my disposal for pain relief but to be honest i’m not so keen on taking it as the Tegretol really knocked me about and Norpress has some nasty side effects from what I hear so I’m just trying to bear with it until i come right off the Tegretol, wait till my body adjusts and see what happens from there.
Yes, I am getting increases of pain but nothing too bad, think its been much easier than i thought it was going to be. Was terrified at the start. But I’m taking it easy. Trying to keep a daily ritual (very important) and pushing on.
Anyway, back to the Aspirin… I take two a day myself, + more when I’m feeling yucky - but (as always) chat with your doctor for advice about dosage.
I used to take paracetamol all the time and find that Aspirin seems to be much more effective for any pain increases and those nasty headaches + migraines.
Here’s an article you may be interested in:
http://www.emaxhealth.com/1020/aspirin-intravenously-relieves-migraine
- it mentions TN
This article is also quite interesting about the history of Aspirin:
http://www.neurological.org.nz/News/Headlines-Articles/Article/Aspi…
Hope everyones well, Susan.
Does it work?