Hi, I’m currently trying to find a good medication for my TN1 that isn’t like dropping a nuclear bomb on your body systems. Not easy, I know! I’ve been in remission for quite a long while (I think it was about 2 years) but the last 6 months or more it’s been getting progressively worse, and Winter doesn’t help either. I’ve tried Amitriptyline, but found it dropped my mood severely so switched to Nortryptiline, which has been miles better on the mood front, but seems to be offering about 5% pain control! I also hoped these anti-depressants would be better for side effects, but they’re not.
I’m up at 50mg of Nortryptiline currently, with a lot of quite unpleasant side effects (dizzy staggers and severe bloating are the worst so far), so I can’t see it getting much better if I try to push it up further. I’m thinking I need to bite the bullet and go back to anti-convulsants.
Carbamazepine was very good at pain control, but the side effects were horrendous. I’ve also tried Gabapentin (at the same time as Carbamazepine so I don’t know how it differed, but it seemed fine) and Lamotrigine, which was a no-go for me as it caused a continuous (6 week) migraine.
My question is which anti-convulsants have worked best for you in terms of pain relief versus the side effects - which has given you the best return for least side effects?
I’m thinking of trying Oxcarbazepine, as it is sometimes cited as being a less troublesome version of Carbamazepine. Have any of you used it and, if so, how did you find it? I’d also be happy to hear from anyone who has used anything outside of the tricyclic antidepressants or anti-convulsants. Thanks!
I’ve been happy with depakote. I use it for daily migraine med first but based on lack of ATN pain it’s clearly working on that as well. It’s the oldest med in that category so they know how it works, its been in use since the 1940s.
My biggest issue with it is hair loss and weight gain, both of which are fairly benign, all things considered. I have found that taking it in combination with gabapentin allows me to take less with the same happy results. It does require blood tests at first to check liver function.
That’s one I’ve never heard of, Azurelle - I had to look it up! It’s an old anti-epileptic right enough. I see they list much the same kind of side effects as all the others, but I’ll definitely add it to my list of alternatives. Thanks for that.
That’s weird, Justus, but I’ve found I’ve been more prone to headaches since I was on Nortryptiline! I’m never sure though if that’s really because they disrupt my sleep so badly (insomnia followed by oversleeping and an inability to get out of bed or rouse myself). I have to say that all the drugs I’ve tried for TN have caused an increased level of headaches (Lamotrigine being the doozy) but it does seem to go hand in hand with nausea and tiredness as a side effect, so it might be a chicken and an egg thing!
I use gabapentin and it makes me dull minded, unproductive and basically stupid. I’m 5’7” weighing bout 135 lbs. I can take 2400-2700 mg of gabapentin for complete pain relief but find it hard to function at work. I tried 150 mg of tramadol divided and was pleasantly surprised I could cut back gabapentin to 1200 mg of gabapentin. I felt my mind clear and energy return with the new meds. It’s worth a try. Everyone responds differently good luck to you.
Hey Barb, gabapentin tends to work great in combination with any other anti-seizure med, have you ever tried adding a different anti-seizure to gabapentin? That way you might be able to take a low dose of both and yet get the relief you were getting on the high dose of gabapentin.
Oh, I admire you being able to use Tramadol, Barb. I’ve only ever had one dose of that and it made me sicker than a dog. My own fault as it said 1-2 tablets as the dose and I knew it was a strong drug (it was leftover from a gallstone attack years before) but I took 2. Never again! But yes, I found Gabapentin to be a gentle drug. Never made much difference to my pain though.
That’s the branded version of Oxcarbazepine, yes? That’s the drug I’m going to try first since I have heard it has kinder side effects. I’m going to add in it in on top of the 50mg of Nortryptiline I’m taking (hopefully!) and if I get pain relief with it, try and remove the Nortryptiline. Fingers crossed…
I started with Tegral which was very hard on me. Side affects were close to debilitating. Then moved to oxcarbazepine. I take 600 mg daily as I am in a big outbreak period right now. After 4 or 5 days the side affects of oxcarb dissipated for me and I get very good pain relief. Once the large was of shocks has subsided I will drop Dow to a low maintenance dose of 75mg in the am and 75 mg in the pm. I too resist taking the anti seizure meds but for now I can’t tolerate the pain without them.
Recently read that some anti-convulsant meds can cause vitamin d deficiency, given research on said vitamin, I might suggest anyone taking should either supplement or preferably have Vit. D test to see their status and act accordingly, cheapish, if you google birmingham uni UK. People as far a field as Australia use the service.
Hi Patrice! I went to the doctor’s recently and asked to be put on Oxcarbazepine only to be told that it isn’t prescribed for TN here (Lothian health authority) and that he didn’t know if he could prescribe it; he’d have to ask the local authority. He also said he’d have to read up on the drug himself as he wasn’t comfortable prescribing a drug he wasn’t familiar with, blah, blah, blah… He then just sat there as if to say ’ Anything else?’ I found this blackly funny, given that I’d gone into see him because Nortryptiline wasn’t giving me pain control. So I asked him for Gabapentin in the meantime and he said “As long as you are okay starting another drug just now…?” that slight question in his voice as if he couldn’t understand why I would want to do that when I could just wait till January sometime on the off-chance that he might be able to prescribe Oxcarbazepine.
I consider myself really lucky that my TN hasn’t come back full-strength because a) I would be REALLY struggling with these inferior meds and b) I couldn’t be half as polite as I am, given the complete lack of comprehension these doctors seem to have. I wonder sometimes how many true TN sufferers they actually see. Bizarrely, I know one of their practice nurses has TN, but she seems to have atypical, and not very painful at that, since it is managed by 40mg of Amitriptyline. I can only assume she is the practice’s full knowledge of TN: someone with headache/ear pain (no shocks) who can find complete pain control on a low dose of anti-depressant.
Not out of any wish for revenge (okay maybe a little!), but I really wish these doctors could have full strength Type 1, with its tyrannising shocks and the terror and inability to function that goes with it, then they can give me speeches about how their ethics won’t let them prescribe a lesser-known drug. The only reason it’s lesser known to him is because he’s ignorant, not because I’m wrong about the use of the drug. He actually said to me “Sometimes things are mentioned on forums that aren’t available” like I was suggesting ear candling or spirit guide chanting. I refrained from comment!
Yes, they do attack Vitamin D levels, Aiculsamoth. I can’t remember how now, but I feel they block absorption? Is there something missing from the end of your comment here: “, cheapish, if you google birmingham uni UK. People as far a field as Australia use the service.”? What are we googling for, and what is the service?
Good God woman,how can you not just flip out at the guy.Gatekeepers to the drugs.
And doesn’t he walk around with a smart phone so he can google search the drug in the office?
Hoping the gabapentin helps.
Helped with my hot flashes.A good bed time drug.
Vit D levels are vital to overall health, I’d recommend anyone with dark skin in the northern hemisphere to supplement, anyone with pale skin also as they tend to avoid sun.
Better still test your levels, less than 50mmol not good, therapeutic levels I believe 150ish.
Ah, it was a triumph of restraint, Ellen! I’ve had a funny turnaround over Xmas, which I’m hoping might stick with me, or at least be a good sign. I wasn’t able to start the Gabapentin because I was nursing someone with flu (and you’re far too stupid when you are starting/titrating these drugs to take care of yourself never mind someone else) so I delayed it and the pain dropped quite suddenly. Not sure if it was just the milder weather. It’s got cold again (and snowed) so I’ll get a better idea over the next few days as to how authentic it is, but for now my 50mg of Nortryptiline is holding the pain off. Fingers crossed…
P.S. How odd that it helped your hot flushes - but good news. If I have to use it I hope I’ll get the same perks!
Thanks for the clarification, Aiculsamoth - got it now! And thanks for the timely reminder. I have Vit D sitting there from last winter I need to start taking it again.
Yay
So glad you will be ringing in the new year feeling better.
made up a batch of marijuana butter yesterday-in a rice cooker.
Supposed to be mostly CBD bit a little bit of THC is in it and it will be
my after dinner pain med.
My Gyno had given me a choice-hormones,anti depressants or gabapentin .I
chose gabapentin as I could go up and down when ever I wanted-which helped
when I was working and sometimes needed to be very alert for the next days
job.
Only now do I realize that changing doses like I did could be a
problem.Doctor never warned about it.
Marijuana butter? That’s a new one! How do you make that, from the raw plant? Are you growing your own, or buying medicinal (processed) marijuana and working with that? And I’ve never heard of anti-depressants or -convulsants being used to treat hormone problems - who knew! I shouldn’t be surprised though. When I was on Carbamazepine it gave me hypothyroidism so it obviously does affect hormones.
I use medical stuff.I have a legal script.So it is a pricey butter.
I just used the dried buds-maybe about 5 grams and a pound of butter in a rice cooker with 2 cups of water.Let is boil for a half hour or so and then on warm for 8 hours and pretty good butter.Had some on rice last night.
Had a nap after.
I might need to sleep winter away.