Primary prescribed Neurontin 100 mg 3Xs a day on 3/21/11. Noticed more tiredness & fogginess than usual first couple of days. Sunday, 3/25, left eye droopy & right side of mouth, slurred speech, mixing up words. Following dr’s advice went to ER &was admitted to r/o bleed, stroke, aneurysm. Exam in ER found muscle weakness in left hand & right foot. Late Monday, 3/26, both eyelids droopy. In the AM eyes more open, slits by evening. After CT, MRI, MRA, EKG, ECHO, LP, no bleeds, stroke, aneurysm, tumor, MS plaques or cardiac issues noted, so sent home to follow up w/primary. An internal med dr & speech pathologist recommended to continue referral process to UM. Looking more closely at my droopy lids at home, I felt there was swelling also that made me think allergy. Only new thing added was Neurontin. Haven’t taken for 2 days & eyes/mouth not droopy, speech not slurred. My question is could this drug, even a low dose cause CVA like symptoms. Googling side-effects it seems possible & wondered if anyone else has had similar problems. Will see primary Tuesday, using Vicodin for now for atypical TN.
Lyn,
You have been through so much this month! Bless your heart! The only thing I can say is that I had similar effects with tegretol way back in the beginning of my journey. Not the droopy eyes or mouth, but certainly slurred speech and muscle weakness. Some of these meds are the pits! The med you’re taking now is very old and thoroughly tested. My doc said it’s one of the safest. As you walk through the trials of each first line and second line med, be aware that it can take time to find the right med or combo of meds that help your individual system. It can be very frustrating! It can also feel like a real victory when you find a med that works and find your life again!
Please msg me if you’d like to chat more. Take good care, dear! I hope you feel better soon!
Sincerely,
LyndaS
Some people are hyper-sensitive to the anti-seizure meds used in trigeminal pain, Lyn. You might be one of those who is. The only other thing I can think of that could conceivably be involved would be Myasthenia Gravis, and I expect that would have been spotted in the battery of tests you went through.
If nobody is discussing alternative meds with you yet, then you might talk with your docs about the tricyclic antidepressants. They are known to have a cross-action even at low doses, with nerve pain.
Regards and best,
Red
Linda ~ thanks for your prompt and encouraging post...appreciated it. Especially the acknowledgement of the frustration. Saw primary this AM. Will continue referral process to University of Michigan Head & Facial pain clinic. So onward and upward we go.
Red ~ Yep, primary felt Neurontin was probably responsible for some of the symptoms & felt it wasn't for me. I was surprised (not really) of your suggestion of Mayasthenia Gravis. Along w/the TN, I really feel there is an underlying undiagnosed problem. Weakness is still present. So move forward in referral to UM. Also, decided to stick w/Vicodin until I see specialist.
Thank you both for your replies,
Lyn
An update: Saw another neuro in May. She felt pain was "somatic", but was willing to address a clawing & weakness of my right hand, which was a "sign". So sent to hand surgeon after having a normal EMG of right arm/hand for tendon repair. Hand doc decided no structural problem to fix after normal MRI of neck & another normal EMG of right arm & hand by different neuro.
So returned to 2nd neuro for hand weakness, & to address TN pain. Rx for Tegretol slowly building up to 200 mg twice a day. Tegretol seemed to work. But by the time of f/u at 1 month check for TN pain & bloodwork, left eye was again showing signs of droop. Upon new complaint of eye droop and cough that I presumed may have been from Tegretol, neuro closed my record, turned to me & said I think we are going down the wrong road. I believe you have Myasthenia Gravis. He has given me a small dose rx for the drug they use to treat the symptoms of weakness, ordered more tests. Because the drug has a positive effect on the weakness, I feel the dx is correct. Just wanted to let you know that just by reading my short note you had a better dx than the 9 neuros & 2 rheumies I had seen in person. The present neuro suggested I play around w/the Tegretol by adjusting the dose downward. Felt better with 200 mgs a day. Last night without thinking took a whole pill, MG symptoms much worse today. Thankfully, for some reason the TN pain has settled down.
I do have a question. As I have jumped over to the very few MG sites, I have noticed that there is a slender thread of people that complain of pain that sounds remarkably like TN that they developed. Do you know, Red, if there may be a link between the two or is it more likely just darn luck that someone would have both occur simultaneously? Just curious.
Thanks, Lyn
Richard A. "Red" Lawhern said:
Some people are hyper-sensitive to the anti-seizure meds used in trigeminal pain, Lyn. You might be one of those who is. The only other thing I can think of that could conceivably be involved would be Myasthenia Gravis, and I expect that would have been spotted in the battery of tests you went through.
If nobody is discussing alternative meds with you yet, then you might talk with your docs about the tricyclic antidepressants. They are known to have a cross-action even at low doses, with nerve pain.
Regards and best,
Red
Lyn, on this one I'd have to say that I haven't seen any consistent connection between Myesthenia Gravis and TN. MG is believed to be in the category of autoimmune disorders, even though its effects are primarily neurological. There's practically nothing about TN that matches up on that sort of cause-effect spectrum.
Regards, Red
Lyn said in part:
I do have a question. As I have jumped over to the very few MG sites, I have noticed that there is a slender thread of people that complain of pain that sounds remarkably like TN that they developed. Do you know, Red, if there may be a link between the two or is it more likely just darn luck that someone would have both occur simultaneously? Just curious.
Thanks, Lyn
Richard A. "Red" Lawhern said:Some people are hyper-sensitive to the anti-seizure meds used in trigeminal pain, Lyn. You might be one of those who is. The only other thing I can think of that could conceivably be involved would be Myasthenia Gravis, and I expect that would have been spotted in the battery of tests you went through.
If nobody is discussing alternative meds with you yet, then you might talk with your docs about the tricyclic antidepressants. They are known to have a cross-action even at low doses, with nerve pain.
Regards and best,
Red
Thanks for the quick reply. Sort of what I thought...just dumb luck.
Thanks, Lyn
Yes, I was on about 16oomgs a day and the left side of my face on a bad day would look like I had bells palsy, always felt like I was going to drool on myself. The brain fog on all these medications is awful. I also had slurred speech and my brain felt so slow, almost like I needed an extra thirty minutes to just catch up. I noticed more swelling all over. It seemed while I was on neurontin my symptoms were worse, always thought that was just in my head. I am now on tegratol and it comes with its own problems, but my face does not droop like it used to. I am allergic to the tegratol so I have to take benadryl with it or i will itch all the time. It feels like a no win situation. Hope this helps some.