Has Anyone Taken Carbamazepine Or A Tricyclic Antidepressant With Pots?

[janiedelite]

I'm seeing my neurologist to try to develop a treatment regimen for my POTS-related neuropathic pain which manifests as burning of my face, mouth, hands and feet, and sometimes my whole body. I'm currently on 2700mg/day of gabapentin. I tried pregabalin but it caused alarming weight gain, spaced-out feeling, and severe withdrawal for 5 days after my last dose (and I was only on it for 2 weeks). Topical medications like lidocaine or ketamine aren't an option since my pain is so diffuse.

My neuro wanted to try nortriptyline (a tricyclic antidepressant) next, but said it lowers the parasympathetic nervous system response through its anticholinergic effect. This would be bad for my mildly hyperadrenergic POTS. BUMMER! I really wanted to try this medication. My hubby had taken it for a few weeks to help him wean off of Tramadol and it was very helpful at reducing his pain without causing life-altering side effects.

So his next choice is carbamazepine/tegretol. I've been on 1 pill at bedtime for a few days and added a pill in the afternoon yesterday. I had horrible side effects like uncoordination, drowsiness, restlessness, couldn't remember from one moment to the next. This only lasted a few hours, but I decided that I can't safely care for our very young foster child while on this medication. I'll call the neurologist about this tomorrow. Maybe these side effects go away.

If you have experience with either of these drugs, would you please share? If you have alternative suggestions for non-narcotic pain relief, would you please share?

Thanks .

[Jan]

When I first got POTS I had an incompetent neurologist who didn't know what I had, a and he prescribed Nortriptyline saying he thought it might help the dizziness.

It was HORRIBLE. I went from dizzy scary dizzy. I couldn't stand out without immediately blacking out. I lost the ability to drive, walk, stand, even sit up etc. because of the blacking out.

My primary Dr. told me to quit, that it was a terrible drug for someone with my symptoms.

My favorite line from the neurologist was, "I don't know what is wrong with you, there are some rare illnesses that can cause symptoms like you have, but I am sure you don't have one of them." Then he told me not to come back as there was nothing he could do for me. I have always wanted to call him and tell him I did have one of those rare illnesses he didn't test me for and was sure I didn't have.

[pat57]

i HAVE TAKEN IT, its settles down in 3 or 4 days. I don't know what your dose is, at higher levels

you remain impaired. I am sure he wouldn't start you on a high dose tho.

I think neurontin is a good medicine.

I would- if I was you - titrate up slower- (on the carbomazapine)you should adjust after a few days each time. A Pharmacist could help you with questions - good luck.

[Elfie]

I have never taken a tricyclic antidepressant, but one of my docs at the Mayo and my PCP that is somewhat knowledgeable about POTS both suggested it as a possible treatment option for my POTs.

[janiedelite]

Thanks Jan. Well, I guess my neuro was right to avoid giving me nortriptyline. Thank you for sharing your experience. It sounds horrible, but now I understand why my doc was keeping me away from that medication.

Thanks Pat57, for sharing your experience with the carbamazipine. I'm thinking that it's not worth going through the side effects for me to stay on it. I do have other means of addressing my skin pain (cool moist towels, fans, etc) when it's in a bad flare. I'll call the neurologist and see what he thinks. I'm just not sure I could safely be a parent (when hubby's at work) while adjusting to that medication.

[spaceorca]

A doctor in the Mayo Clinic's pain department prescribed nortryptiline for my son, who has agonizing pain in various parts of his body. After taking the medication for a few days, my son's urinary retention (which he'd reported to the pain doc among other autonomic symptoms) got much worse--he had to be catheterized to get the urine out. We called the Mayo pain doctor back and he said rather blandly, "oh, yes, nortriptyline often has that effect." Of course, he didn't tell us that in advance and apparently didn't think about the fact that my son already suffered from urinary retention: he just prescribed the medication at the top of his list.

So then he suggested neurontin. That works well for many patients, but it also causes depression and suicidal tendencies in teenagers (again, as we discovered later, side effects that are well known to doctors)--and my son was only 17 at the time. Luckily, he was self knowledgeable enough to recognize what was happening. He came to us and said, "since I started taking this medication, I've had very strong urges to kill myself." Dan was worried enough about how the medicine was distorting his feelings that he asked us to watch him while he was weened from the med. We called the pain doctor who said, "oh, yes, I thought maybe your son was old enough at 17 but maybe he wasn't." At that point, he washed his hands of us (although we were also done with him).

Another doctor prescribed trileptal for Dan, and he has been taking that for almost 5 years now. It helps a little with the neuropathic pain, and more with tremors. So that one has worked for him.

I confess, though, that the medication that best controls Dan's pain is oxycodone--and he takes that on a regular basis, monitored by his internist. It has no negative side effects for him, and he hasn't developed a tolerance; his usage actually has diminished somewhat over time. So many doctors prescribe all kinds of meds for pain, but refuse to consider narcotics--although the narcotics may be *less* likely to mess with the nervous system. (Dan's gastroenterologist likewise told us that the oxycodone is better for his liver than many of the other meds prescribed for pain.)

But reactions to all of these drugs are very individualized. I hope our experiences are useful as a guide, but other people have good experiences with nortriptyline and neurontin--and bad experiences with the drugs that have worked for Dan. I just wish some doctors would make a more individualized judgment upfront (like considering the parasympethetic effects of a drug like nortriptyline in a patient whose autonomic system is compromised in exactly that way). Instead, we patients have to do that!

[janiedelite]

Thanks for your reply SpaceOrca. The Mayo neuro had recommended Trileptal for me as well, and I've read that trileptal is a derivative of carbamazepine. The side effects are the same for both meds, according to what I read. I'm glad that your son found a regimen that works well for him.

I do have an Rx for hydrocodone, I just try to avoid taking it while I'm the only one caring for our foster child (in case I have to drive somewhere). My neuro offered Ultram, but my hubby had horrible problems with withdrawal after taking it for back pain. So my doctor said to just continue to take the hydrocodone as needed. That way I can adjust my dose on the bad days, and don't have to take something 365 days a year.

Thanks again, all of you, for sharing your experiences. I think I'm reaching the point of risking worse side effects than the pain I'm actually trying to treat. I might stay with the meds I'm currently taking, and just do my best to get through the bad days.

[spaceorca]

Thankful, My son never tried tegretol, but I know that trileptal has a very different side effect profile. Although they're related meds, the big difference is in side effects--trileptal is a variation that addressed some of those side effects. Here's one site I found quickly on the web, summarizing some of the differences I'd heard about:

http://www.psycheducation.org/depression/meds/trileptal.htm

That site deals with tegretol and trileptal used for bipolar disorder, rather than for POTS and similar conditions. But the comments there are similar to the ones the neurologist made 5 years ago when he started my son on trileptal. Just wanted to note this in case you want to ask your doctor about trileptal--it's possible the side effects would be lower for you than with tegretol (especially if you start low and increase slowly as this site suggests). Good luck with the meds and your foster child!

[miranda]

I took amitriptyline which is the same sort of drug, it really lowered my blood pressure further, made me gain weight and made me sleepy alot.

[janiedelite]

Thankful, My son never tried tegretol, but I know that trileptal has a very different side effect profile. Although they're related meds, the big difference is in side effects--trileptal is a variation that addressed some of those side effects. Here's one site I found quickly on the web, summarizing some of the differences I'd heard about:

http://www.psycheducation.org/depression/meds/trileptal.htm

Thanks Spaceorca, for clearing up the differences in side effects. Trileptal certainly looks more promising. I wonder why he didn't start me on it right away? Oh well!