Hi, have you ever taken Carbamazepine? Did you ever develop neutropenia (low neutrophil [white blood cell] count) when you were taking it?
I've been on Carbamazepine for just over a year and my neutrophil count is steadily dropping. It's now officially classed as neutropenia and is causing me problems, specifically, a ringworm infection that is just getting worse, a tooth/gum that is infected and won't improve, and painful urination. I am possibly also getting bad sweating and a runny tummy from it too.
I haven't had a blood test for four months, which is far too long (yet another story of irresponsible doctoring!) but I know it is probably worse since I am feeling worse.
Have any of you experienced the same problems? Did it settle down or did you have to change meds? Did you have a low neutrophil count before you started on Carbamazepine?
Any information gratefully accepted. Just like to know how bad this may get!
I don't really have anything constructive to add to this except to ask if you think this is the cause of your icky tummy? I've noticed that you've made mention of it before. I'd err on the side of caution and ask for a change of meds quick smart!!
I remember too that you've spoken before about your British Health System not being much chop so, good luck!!
Hi Catwoman. I'm not sure about the dodgy tummy, to be honest. I only mentioned it here because I read it can be a symptom of Neutropenia and about a month ago my longstanding constipation suddenly turned to a runny tum. It's either the neutropenia or it's lactose intolerance, possibly from undiagnosed coeliac disease. If only these things were straightforward, eh?
Many years ago (70s) I had Carbamazepine and serous lucopenia and was immediately hospitalized to have to have platelet transfusion and of course get of the med.
I think that was what I was thinking of Teeth, I just remembered you enquiring as to whether there was a link between TN and IBS or the like. Or perhaps I've lost my mind which is always a possibility.
Hi Ekay. That couldn't have been a fun experience. I'm in 'remission' at the moment, as in I am not in pain, but I am still on 600mg of Carbamazepine. I'm just about to try and come off it, but I confess it frightens the bejesus out of me. The idea of my pain coming back fills me with horror. Can I ask what you replaced the Carbamazepine with, and have you have any blood cell problems since?
ekay said:
Many years ago (70s) I had Carbamazepine and serous lucopenia and was immediately hospitalized to have to have platelet transfusion and of course get of the med.
No Catwoman, your sanity is safe! I did post a while back asking if anyone also had coeliac disease, but I had no takers. I feel that coeliac disease would be a good fit for me, as it produces neurological symptoms, but I've found little to no evidence to back it up. I have found a lot of people with both thyroid problems and TN though - I don't know whether that's simply because so many people have thyroid problems so it's bound to occur, or whether there genuinely is a connection. If only someone would do causative research but they don't seem to be interested; it's all about pain control.
I understand that, but speaking personally, I'd much rather know the cause. Pain control is just a patch-up, cause can lead to a cure!
catwoman said:
I think that was what I was thinking of Teeth, I just remembered you enquiring as to whether there was a link between TN and IBS or the like. Or perhaps I've lost my mind which is always a possibility.
so glad to hear you are in remission. How long have you been dealing with TN and carbamazepine? I had been 10 years with serious TN and negative reactions to all drugs tried. eventually I had MVD surgery and was actually one of the early ones at UCSF(70s) in San Francisco. I got to read about my results in a medical journal :-) My doc learned the procedure from Dr. Janetta.
I am on Gabepentin now for the OTHER side! started about 3 or 4 years ago.
I hope you continue in remission and can GRADUALLY cut back on the meds. Good luck!
Woman with the electric teeth said:
Hi Ekay. That couldn't have been a fun experience. I'm in 'remission' at the moment, as in I am not in pain, but I am still on 600mg of Carbamazepine. I'm just about to try and come off it, but I confess it frightens the bejesus out of me. The idea of my pain coming back fills me with horror. Can I ask what you replaced the Carbamazepine with, and have you have any blood cell problems since?
ekay said:
Many years ago (70s) I had Carbamazepine and serous lucopenia and was immediately hospitalized to have to have platelet transfusion and of course get of the med.
Hi Ekay. I've had TN for just over a year, I think. Of course, I don't know how real my remission is, in that I've never tried to do without meds. My doc is not in favour of it, but then he doesn't believe in the power of my B12 injections (they put my pain into remission). How awful that it came back for you, and on the other side too. Oddly, I've twice been woken from a dream with electric shocks on the other side of my mouth. That's made me anxious for days, both times!
I didn't find Gabapentin helpful when I used it. Nor Lamotrigine. That was a good drug, but dreadful side effects. By the way, has your leukopenia ever come back?
ekay said:
so glad to hear you are in remission. How long have you been dealing with TN and carbamazepine? I had been 10 years with serious TN and negative reactions to all drugs tried. eventually I had MVD surgery and was actually one of the early ones at UCSF(70s) in San Francisco. I got to read about my results in a medical journal :-) My doc learned the procedure from Dr. Janetta.
I am on Gabepentin now for the OTHER side! started about 3 or 4 years ago.
I hope you continue in remission and can GRADUALLY cut back on the meds. Good luck!
Woman with the electric teeth said:
Hi Ekay. That couldn't have been a fun experience. I'm in 'remission' at the moment, as in I am not in pain, but I am still on 600mg of Carbamazepine. I'm just about to try and come off it, but I confess it frightens the bejesus out of me. The idea of my pain coming back fills me with horror. Can I ask what you replaced the Carbamazepine with, and have you have any blood cell problems since?
ekay said:
Many years ago (70s) I had Carbamazepine and serous lucopenia and was immediately hospitalized to have to have platelet transfusion and of course get of the med.