I had an interesting situation and was wondering if anyone could relate....
I was taking a lot of anti seizure drugs and antidepressants for TN 2 for a long time and got sick because I actually increased the dosage too much. I mistakenly stopped taking ALLthe drugs. My body reacted badly for a week. But after about 5 days, the pain subsided and stopped. I had relatively no pain for 4 months. It has slowly started to increase again. Has anyone else have this happen???
I think the drugs we take can actually counter any repair our body is trying to make???
Hi Laura, sadly it is possible that that is simply the length of time it has taken for your body to lose all the anti-convulsants you have been taking. They do linger in the body for a long time. Your TN may simply have resurfaced after you lost the drugs.
As regards the drugs countering your body trying to repair the problem. That's very possible. Anti-convulsants have such an adverse effect on many people (I'm one of them!) that it's perfectly possible they could be making the situation if not worse at least slowing any repair down, simply because they are giving the body so many other problems!
When I was diagnosed with TN I was having the sharp facial pains on one side. Tegretol was prescribed but I never took it because I didn't want to start it unless the pain got worse. The sharp pains went away on their own and I had nothing but twinges for about 18 months. The sharp pains returned recently but have again subsided to twinges again. If I had started taking the tegretol the first time I would have thought that the drug was what made it go away but it went away on its own. Other people on the forum have said that they have remissions also. I don't know if their remissions were on medication or not.
That's a very interesting point, Suggestion. I know Tegretol worked for me because it stopped the electric shock pains within a fortnight, but I had background pain that never went away. That lasted a long, long time, and no amount of anti-convulsants could shift it. It was B12 injections that finally sent my TN into remission. I am currently withdrawing from Tegretol and am down to only 200mg a day and the B12 is still holding. But it's a very interesting point that you might not know if you are having a remission or if it's the Tegretol if the pain goes away completely. It's really only people like me who still have 'background' pain who can be sure(r) of the situation.
I have a suggestion said:
When I was diagnosed with TN I was having the sharp facial pains on one side. Tegretol was prescribed but I never took it because I didn't want to start it unless the pain got worse. The sharp pains went away on their own and I had nothing but twinges for about 18 months. The sharp pains returned recently but have again subsided to twinges again. If I had started taking the tegretol the first time I would have thought that the drug was what made it go away but it went away on its own. Other people on the forum have said that they have remissions also. I don't know if their remissions were on medication or not.
I started lowering my dose of tegretol due to it interacting so much with my thyroid medication. And I have slowly noticing the pain is returning. At first very mildly and now its getting a little more intense. Still trying to hold off upping the dose again. I do have a compression on both sides but was hoping it had just calmed down.
That's very interesting, Wendy. I take Levothyroxine for hypothyroidism. It's a new drug for me, and I'm not sure if I will be continuing with it. Can I ask how Tegretol interacted with your medication, and was it Levothyroxine (or the US equivalent) you were taking?
Medication such as tegretol is known to cause hyponatraemia and indeed muscle pain (myalgia) as a side affect, The neck and its associated structures can cause TN pain. If you have TN due to neck/ musculoskeletal dysfunction, taking tegretol could indeed potentially worsen or maintain the situation, so withdrawal of meds (I hasten to add, without a neurologists supervision, it can be extremely dangerous), might improve the situation. I am not a pharmacologist.
Hi Aiculsamoth. I've never heard that Tegretol can cause myalgia before. Do you know of anywhere where this is discussed or I could read about that side effect?
aiculsamoth said:
Laura,
Medication such as tegretol is known to cause hyponatraemia and indeed muscle pain (myalgia) as a side affect, The neck and its associated structures can cause TN pain. If you have TN due to neck/ musculoskeletal dysfunction, taking tegretol could indeed potentially worsen or maintain the situation, so withdrawal of meds (I hasten to add, without a neurologists supervision, it can be extremely dangerous), might improve the situation. I am not a pharmacologist.
Hyponatraemia is possible as CBZ’s main mode of action is to block sodium channels during rapid, repetitive, sustained neuronal firing. If in fact one does not have Typical TN but rather one of the other 100 or so cause of TN type pain, this can occur as that nerve firing is not occurring. Most common is Atypical facial pain (or idiopathic facial pain) which is characterized by deep, achy, constant, pulling or crushing pain that involves diffuse areas of the face and head. The pain fluctuates in intensity and severity. Trigger points on the face cannot be found, the pain is often worse at night, and may be aggravated by activity. Cervical causes are most common. Some docs however still call it TN.
You might make note on the home page with the addition of the more recently updated classifications of TN and the further separation of the Typical and Atypical classifications (and atypical face pain.) It really pulls some things into focus in regards to drug therapy and even surgeries
Thanks for the link, Mod, that was really helpful. I've had a lot of serious side effects with Carbamazepine, even on low doses: neutropenia, hypothyroidism, low sodium (I was hospitalised for it, but I do have classic TN, not ATN) and erythema multiform. I also have all the standard culprits of stupidity, insomnia, exhaustion, staggering, itchy eyes and skin, blah, blah, blah. The list feels endless. But I wasn't aware of muscle pain as a possibility. I suffer very badly with this and it never occurred to me that Carbamazepine might be playing a role. Recently I have also developed a painful gut that I can't either explain or medicate. I did mention it to my doctor but he ignored it, like he ignores everything else. He ignored my erythema multiform for 14 months! I'm afraid he knows nothing about the side effects and cares less. I've been on the drug for almost two years now and I still have hallucinations if the dose is changed - he doesn't believe in that either. I suspect he'd change his mind if he saw spiders everywhere and got mad erratic urges to kill himself at random moments!
ModSupport said:
Its not unknown but it is one of the more rare effects. The effect on the thyroid is more common.
Hyponatraemia is possible as CBZ’s main mode of action is to block sodium channels during rapid, repetitive, sustained neuronal firing. If in fact one does not have Typical TN but rather one of the other 100 or so cause of TN type pain, this can occur as that nerve firing is not occurring. Most common is Atypical facial pain (or idiopathic facial pain) which is characterized by deep, achy, constant, pulling or crushing pain that involves diffuse areas of the face and head. The pain fluctuates in intensity and severity. Trigger points on the face cannot be found, the pain is often worse at night, and may be aggravated by activity. Cervical causes are most common. Some docs however still call it TN.
That negated my last 45 minutes of research :) On searching however, tegretol and myalgia-rare, tegretol and hyponataemia-not so rare, hyponatraemia and myalgia even less rare, thyroid and myalgia/ muscle pain even less rare.
Mod support, I tried finding it on the home page but asides from symtomatic TN what are the other causes of tn you mention? To your knowledge are the docs considering these in their diagnosis?
Well, aiculsamoth, add in my erythema multiform and I am one lucky hombre. I read somewhere recently that there is a one in 10,000 chance of developing the rash on Carbamazepine. Looks like I won the lottery!
You will find a lot of vindication. Especially when you figure out that rhizotomy occurs in C1,2 or 3. I don't believe in atlas adjustments but............ Yes there very definitely is a cervical cause for TN (type) pain. I'm not about splitting hairs unless you do a detailed dissection of the entire nerve you can not prove that it is "TN" even an MRI is only accurate +/- 4mm
Its fascinating to me that we do "step therapy" with meds but drill holes in ones head without the same care......
In the US it varies from East Coast to West Coast how they look at it. West Coast Pain Management clinics are using everything they can including spinal adjustments by either Chiropractors or advances PTs. A wider range of injections, trigger points, and rhizotomy. (Its old but new again)
aiculsamoth said:
That negated my last 45 minutes of research :) On searching however, tegretol and myalgia-rare, tegretol and hyponataemia-not so rare, hyponatraemia and myalgia even less rare, thyroid and myalgia/ muscle pain even less rare.
Mod support, I tried finding it on the home page but asides from symtomatic TN what are the other causes of tn you mention? To your knowledge are the docs considering these in their diagnosis?
As it happens mod support, I don't believe in atlas adjustments, or at least the method of diagnosis or implementation as a sole therapy. I'm glad cervical issues are mentioned.
Your last sentence to me sums up my thoughts entirely.
Yes I take levothyroxine. The tegretol decreases the effectiveness of the levo so you end up taking a higher dose to get your thyroid right. Any change in carbamazepine and you start the thyroid roller coaster. It has taken around 8 months to get my thyroid right and then started having face pain. Go figure....
Woman with the electric teeth said:
That's very interesting, Wendy. I take Levothyroxine for hypothyroidism. It's a new drug for me, and I'm not sure if I will be continuing with it. Can I ask how Tegretol interacted with your medication, and was it Levothyroxine (or the US equivalent) you were taking?
What my doctor had told me is that over time it is possible that TN will go into remission. However, he also said that its no guarantee that it wouldn't come back!
Thanks, Wendy, I didn't realise that. I've been taking 50mg of Levothyroxine for a couple of months now because I have subclinical hypothyroidism, possibly/probably caused by Carbamazepine. But that means the carbamazepine itself will be interfering with the medicine trying to correct the hypothyroidism it caused - ironic and a bit counterproductive, to put it mildly!
wendyjo said:
Yes I take levothyroxine. The tegretol decreases the effectiveness of the levo so you end up taking a higher dose to get your thyroid right. Any change in carbamazepine and you start the thyroid roller coaster. It has taken around 8 months to get my thyroid right and then started having face pain. Go figure....
Woman with the electric teeth said:
That's very interesting, Wendy. I take Levothyroxine for hypothyroidism. It's a new drug for me, and I'm not sure if I will be continuing with it. Can I ask how Tegretol interacted with your medication, and was it Levothyroxine (or the US equivalent) you were taking?