OK Everyone, I am new to the site. I was officially diagnosed with TN New Year's Eve last week. I knew that I had it before the appointment (thanks to the internet) but the neuroligist confirmed my new reality. The doctor prescribed Gabapentin 300 MG twice a day for a total of 600MG to start. Anyway, yesterday I noticed that toes are feeling funny. Like numb and pine needles. Also, the toenails are turning from pink to an opague white color. Has this happened to anyone else? Is this normal? Am I having a bad reaction? I called the doctor's office but no one has called me back yet. Thanks in advance.
talking to your doctor is the best thing to do right now. Over the years I have been on many different meds for this problem and some of them have given me bad enough side effects to discontinue their use and switch to something else. There's quite a long list of meds for your doctor to try in order to find the right one for you. Hang in there and work closely with your doctor.
Actually the BEST thing to do now is call a pharmacist--------- they have Millions of side effects at their finger tips, literally,
Doctor, second call
If you were me or my loved one
Hi Sadie, First of all Welcome, Sorry you have to be here at all but you will get loads of support from a great bunch of people.
The numbness is probably due to the meds as the point of them is to slow down nerve impulses. This helps to control pain but I agree with KC talk to your pharmacist/ doctor. The doc may decide to change meds. Hope you get some relief soon.
I had some numbness when I first started taking Trileptal in my right foot.Well my toes mostly. I think it took about two to three weeks before it went away.
If it's helping your pain it might be worth putting up with.This nasty condition seems to require some nasty drugs to treat it unfortunately.Welcome to the group,but i'm so sorry you had to find us and join.I diagnosed myself via the internet also.Took a print out to my Dr. and told him i wanted tegretol.Ended up taking the generic carbamazepine slow release.It's quite nasty also with lots of side issues,but usually took the edge off the severe pain.Good luck.There are lots of nice people here that want to help as much as they can.
Hi Sadie
I'm new here too. I'd never heard of TN until it happened to me. I've already found the people here so helpful.
I agree with Kc Dancer Kc about getting in touch with your pharmacist. They're very knowledgable, and can be easier to get hold of than a doctor. Talk to your doctor too of course, but I would suggest calling the pharmacy if you ever have to wait too long. Just my opinion!
Hope you get it resolved quickly. Take care!
I had different (and awful) side effects from carbamezapine and switched to Oxcarbamezapine. I lost the horrible side effects, but to be honest I’m not positive that that’s the one that helped me go into remission. Cold laser therapy has helped me the most- Theralase- you can find it, most often through a physical therapist’s office.
Know that you are not alone.
Cveltri
I take gabapentin but I don't think that is side effect. I have neuropathy in my feet from a type of spinal cord injury. I would see your primary for numbness and pins and needles of your toes. Are you diabetic? You can get neuropathy in your feet from that disease. The only way to find out if it is the gabapentin is to stop it and see if that goes away. There are other meds to try. And certainly call your pharmacist and doctor. Sharon
Yes, ...when i started gabepentin, the inner sides of both of my big toes got numb/tingly. However, my toe nails did not change in appearance, as you describe.
Even so, i agree that you should called pharmacists AND doctor to get info.
Hope you find an answer soon...
~wishing you peace and a pain free day
Mistee
I had the same thing happen on Tegretol, pain in my legs, toes numb and toenails changed...it turns out I have an underlying auto-immune disorder/neurological disorder that the Tegretol made worse and that disorder was what caused my TN. You should give the doctor a call, and also I would see if they think maybe something else is going on that caused the TN and thats why you are going numb. Better safe than sorry
Hope you feel better soon
Wendy/crashgirl
Hi Wendy, I have been taking tegretol and gaberpentin for a few years and I have numbness pins and needles and same prob with toenails and am now wondering if it’s meds or down to the neurological/autoimmune disease that I have called cidp? What neuro condition do you have if you don’t mind me asking? Many thanks x
crashgirl said:
I had the same thing happen on Tegretol, pain in my legs, toes numb and toenails changed…it turns out I have an underlying auto-immune disorder/neurological disorder that the Tegretol made worse and that disorder was what caused my TN. You should give the doctor a call, and also I would see if they think maybe something else is going on that caused the TN and thats why you are going numb. Better safe than sorry
Hope you feel better soon
Wendy/crashgirl
It sounds to me like he has given you too high of a dose to start with. My doctor started me a 100/mg per day and raised me 100 every 7 days. I did not have these side effects and I went all of the way up to 3600 mg/day. I just weaned off of the med completely, to try another procedure. My doctor took me down way to quickly. I had severe itching and severe nausea so I had to go back to 1800 mg and go slower. In speaking with my pharmacist, your body can go through very strange reactions by going up or down too quickly. Good luck in your road to a painless life. I am still driving the road myself.
http://www.drugs.com/sfx/gabapentin-side-effects.html
this site lists possible side effects from gabapentin... and mentions just about everything except pins and needles or toenail discolouration!
Definitely call your pharmacist and your doctor, honey.
And hang in there, it's not an easy road you're on, but there is help here, and lots of care and support when you need it.
So sorry to hear of your recent tn diagx! this is such a process of meds being first line of treatment. try to get the book, "Striking Back-the trigeminal and face pain hand book" has a wealth of infromation in it. look on amazon for used copy or i know Barnes and Noble can order it for you.
There are triggers you have to figure out to avoid setting off the pain. etc all in book.
All meds have side affects pharm or dr. best ones to figure out if you should continue taking it or they are side affects you can live with if they are less than the pain.
when i started GABAPENTIN i was extremely tired and some of the early side affects went away after body adjusted to the medication. so one day at a time and blessings for pain free days for you!! Know we are here for you!
First, I want to say thank you from the bottom of my heart. I sent out my question last night, hoping that at least one person would reply with help. When I saw all the responses from strangers who wanted to help I was overwhelmed. It meant alot to me. This has been hard on me (physically, mentally, and emotionally). I can't imagine the pain getting worse. I will talk to the doctor and pharmacists. I will keep, keepin on. Thanks again.
Sometimes a quick way to get things fixed up is to call the triage at your local hospital and ask if they can page the neuro on call. They can tell you whether you need to go in or not. Not sure how it works in the US.
Please understand this is such a complex problem. One of the hardest deals is finding the right medications that will work for you. I have that some medications the side effects go away after a period of time although usually not the fatigue. I know it’s hard but always talk to a pharmacist or Dr. About these issues. My heart goes out to you and your family with this new diagnosis. Don’t be afraid to ask for the support you need; either through your Physicians, pharmacy, family, friends, or your friends and support from this site which offers a wealth of great information but especially the great supporters on this website. It’s a place to come where you know your not in this boat alone. A place where you know other people actually know exactly what your going through. Prayers to you my friend. I pray you will find some relief soon.
I am still actually waiting for a diagnosis, I have been going to Hopkins for over a year to supposedly the best specialist in the world for auto-immune and still dont have an answer, right now they are calling it radiopathy with a neoplasm of undetermined origin, they have also called it small fibre neuropathy and ganglionitis....my frustration level actually hit maximum overdrive yesterday, when I went for my 4th EMG in 8 months and they ran 3 hours late, then wanted to jab me with needles for 2 hours, after 1 hour I couldnt take it anymore......I wish I could give you more info, but honestly, the symptoms I have are close to Sjogrens, but all the tests for that were negative....
Wendy
tech42 said:
Hi Wendy, I have been taking tegretol and gaberpentin for a few years and I have numbness pins and needles and same prob with toenails and am now wondering if it's meds or down to the neurological/autoimmune disease that I have called cidp? What neuro condition do you have if you don't mind me asking? Many thanks x
crashgirl said:I had the same thing happen on Tegretol, pain in my legs, toes numb and toenails changed...it turns out I have an underlying auto-immune disorder/neurological disorder that the Tegretol made worse and that disorder was what caused my TN. You should give the doctor a call, and also I would see if they think maybe something else is going on that caused the TN and thats why you are going numb. Better safe than sorry
Hope you feel better soon
Wendy/crashgirl
crashgirl said:
I am still actually waiting for a diagnosis, I have been going to Hopkins for over a year to supposedly the best specialist in the world for auto-immune and still dont have an answer, right now they are calling it radiopathy with a neoplasm of undetermined origin, they have also called it small fibre neuropathy and ganglionitis....my frustration level actually hit maximum overdrive yesterday, when I went for my 4th EMG in 8 months and they ran 3 hours late, then wanted to jab me with needles for 2 hours, after 1 hour I couldnt take it anymore......I wish I could give you more info, but honestly, the symptoms I have are close to Sjogrens, but all the tests for that were negative....
Wendy
tech42 said:Hi Wendy, I have been taking tegretol and gaberpentin for a few years and I have numbness pins and needles and same prob with toenails and am now wondering if it's meds or down to the neurological/autoimmune disease that I have called cidp? What neuro condition do you have if you don't mind me asking? Many thanks x
crashgirl said:I had the same thing happen on Tegretol, pain in my legs, toes numb and toenails changed...it turns out I have an underlying auto-immune disorder/neurological disorder that the Tegretol made worse and that disorder was what caused my TN. You should give the doctor a call, and also I would see if they think maybe something else is going on that caused the TN and thats why you are going numb. Better safe than sorry
Hope you feel better soon
Wendy/crashgirl