Hi all, im pleased to say at this moment in time i am pain free, but thats only because i am zombied out. I am on 1500mg tegtratol, 225mg Lamotrigine and 150 mg of Procabolin.
I fee constant double vision, is this normal? the pain is gone away, will the double vision go away. please help.
x
Oh yes, I was on the same cocktail and had awful problems with my eyes, and while it wasn’t always double vision I had, I felt like I had no control over my eyes, and often I would feel my eye’s drift, like they were going “lazy” it’s a really unnerving thing to have happen. I really hope you can get this under control and that you start to feel better soon.x x x
Wow, that’s a lot of medication to have to take. I took meds for 6+ years until I finally had MVD surgery. I never had double vision on the meds I took, but I did have a lot of nasty side effects. The worse being memory loss. I actually forgot how to drive a car! On top of the bad side effects, it stopped working and the pain became unbearable.
I finally begged my doctor to give me a referral to an expert neurosurgeon. He did the MVD, I woke up with no TN pain… and double vision. It was over 3 months ago, the vision has improved. Some of the pain has returned, but it is mild compared to the agony I used to have.
Has your doctor talked to you about having surgery? The MVD surgery is the most invasive and requires a longer recovery, but it is also the most effective treatment because it gets to the source of the problem. Even though my MRI’s showed nothing out of the ordinary, when the surgeon got into my skull, he found an artery and some scar tissue compressing the trigeminal nerve. Even though I am still having some pain, it was totally worth it. I feel like that surgery gave me my life back. Just something to consider.
Hi Nadeem, I am sorry you are also struggling with this terrible roller coster TN too. I also am on Tegretol 1300mg and 40 of Baclofen. Double vision is also a big side effect in my life too. Have you been at this level for a while? I found that upping my doses caused DV then that faded…but now it is there every few days. My pain is manageable but I cannot stand the transient double vision. I think it is the Tegretol. The more i took the more i had DV. I find it is worse on days I am tired. Do you divide you doses up to 4 + times a day? I find that helped a little. Have your eyes checked too just incase. SOrry for the scattered thought process…mind is too clouded.
I know how you feel and i wish you luck. 
Erin, it’s funny that you say you think it’s the tegretol causing the DV, for me I always found it was the gaba/lyrica I was taking on top of the tegretol that did that, but I take the extended release tegretol and I have far far fewer side effects from that, and I take it twice a day rather than split through the day,( because I was forgetting when to take them etc so the retard works much better for me) just my memory, and ability to retain information mostly, but when I was on the others too I was a complete wreck. My speech, my memory, my vision, my balance, the list went on and on and on of all the things that the drugs were doing, thankfully enough I am just down to the tegretol alone now and things are much more tollerable.
Just my tuppence worth.Much love to you all.
xxx
Erin said:
Hi Nadeem, I am sorry you are also struggling with this terrible roller coster TN too. I also am on Tegretol 1300mg and 40 of Baclofen. Double vision is also a big side effect in my life too. Have you been at this level for a while? I found that upping my doses caused DV then that faded…but now it is there every few days. My pain is manageable but I cannot stand the transient double vision. I think it is the Tegretol. The more i took the more i had DV. I find it is worse on days I am tired. Do you divide you doses up to 4 + times a day? I find that helped a little. Have your eyes checked too just incase. SOrry for the scattered thought process…mind is too clouded.
I know how you feel and i wish you luck.
hi all thanks for sharing your experiences with me. I tried to break up the tablets to 4 times a day rather than 3 but the twitcheds came back. My body seems to like the 3 times a day at the moment and the twitches stop in between each dose. thankfully im pain free for 2 days but an utter zombie. I hope i can lower my dose soon as i cant be a zombie forever i need to go back towork !
much love to all
x
Hey Nadeem and Grace (any others too)
I was just at my eye doctor…she suggested the DV may be a new manifistation of my previous migraine headaches. Did either of you suffer from Migraines prior to TN? The drugs would mask the pain now? I don’t know…just food for thought!
Have a pain free day !
Hey Erin,
No I hadn’t had migraines at that point, it wasn’t something I ever had problems with then, I mentioned it to a GP who said go to the optitian, but I never went because shortly thereafter I stopped taking the drugs and that particular problem along with various others went away.
If you already suffer from migraines though it may well be connected.
All my love
Gracie x x x
Hi guys.
Ive never suffered from migraines. i tried to cut out lycria for 2 days as i thought i was getting better and the twitches came back. I thing lycria is helping as im back on them now. I wonder what I can cut out slowley i just want me life back. The DV is really bad its been going on for 2 weeks now. Am glad im having no attacks ( fingers crossed ) for now but the twitches are there now and again.
Any thoughts?
also ive had a horrible chest infection at the same time as the TN coming back, do you think this is related. i mean 5 weeks in and my chest infection is just starting to clear.
Nadeem