No migraine in a place where I SHOULD have gotten one

Hey Jess,

So I actually was in touch with my neurologist because I had a very fast resting heart beat from a few weeks on nortriptyline at 10mg again - 105 resting, and abnormally high when I was exercising last night - he wants me to start on Gabapentin to see if it calls down the nerve overactivity to stimuli without the heart side effects that are kind of dangerous. These are rare, so go figure the med that would be helping me is also causing me side effects (I guess that shows just how strongly I was responding to it). I have to titrate the Gaba slowly I think starting with 100mg/day. I’ve seen a recommendation of 600mg 3x per day as working well for neuropathic pain, so hopefully that will work whenever I get up to that dose. I also wish I could stop this problem naturally but I need to stay in my job and I want to enjoy restaurants and movies again and stuff like that, so I am going to give Gaba a shot and see how it goes. Topa wasn’t good for me with the sulfa allergy so that’s off the table. I hope you feel better and I’ll be trying to keep riding as long as going off the nort and onto Gaba doesn’t cause any problems. I’ve read on this forum that Gaba was the magic cure for some, so fingers crossed… I also have lots of neck tightness. The one thing that does help with that is exercise and swimming, I found, on days I wasn’t too dizzy.

Liv xx

Hey Liv,
So sorry to hear about your nortriptyline experience. That’s a scary high heart rate. Before my Johns Hopkins vestibular clinic testing (I got put in a rotational chair, NO fun at all) my heart rate was 120 when they took my vitals. But I knew deep down that all my increased heart rate I felt on the Amitriptyline couldn’t be from the anxiety. I also felt it the next morning and off and on throughout the day when otherwise wasn’t aware of being anxious.
I am on 100 mg at night of Gabapentin. I started it the same time as the Librium, so it’s hard to say exactly, but I didn’t notice much from it. The first night I had a mild, MILD stomach ache and headache about 2hrs after I took it (probably anxiety) but after that I was fine and slept very well for a long time. Now my body is used to it and it doesn’t put me to sleep like I used to. I think I will be increasing to 200 mg soon. I also had some constipation issues off and on, again don’t know if that was due to the combo of the 2 drugs or what. If I find out when I increase (maybe after my appt Sat) I’ll let you know.
Gabapentin, by the way, was on the list of medicines the Hopkins specialist recommended as possible medicines to combat MAV, so maybe it will work for both of us. I really don’t want to go on much higher doses of it, but it’d be better than trying another NEW medicine. Fingers crossed.
I like to soak in the hot water and salt water pools in my gym. I was swimming at one point, just mainly breast stroke, but that seemed to hurt my neck more. The heat from the 90 degree pool is great to exercise in, I use water weights when I feel up to it. There’s also a 104 degree hot tub that does wonders for me. Another reason a lot of mine is muscle tension. I go to bed at night with a heating pad on my neck, and often use it during the day.
Need to get off the computer now, you know how it feels on the eyes after awhile. Good luck with the Gabapentin!
~Jess

Hey Jess,

Yeah it was so annoying to have this happen, but the other side effects were I guess somewhat troubling too - I had super slow digestion (it did feel like metabolism slowed down) on nortriptyline and feel very sedated. That said, it was fantastic for my dizziness/disequilibrium issues!! Oh well… I’m nervous now to go riding since I have to taper off of it. I’ll just see how I feel towards the weekend I guess, since I was supposed to go again on Sat and was so much looking forward to it. This illness is so cruel!

That’s super interesting you’re on gaba already! I’m going to start 100mg tonight too - that’s nice to hear you sleep well on it. Topamax made me semi-insomiac. I’ll let you know how it goes! I’d like to stay at 100mg nightly for a week, then add some more doses in during the day to get to 300mg per day if I think I need more. Then add more like doubling the individual doses one week at a time - I think that 600mg three times a day is recommended by some doctors for neuralgia.

I feel like I’m a junkie testing drugs off the street at this point (!), but I’m really determined to find the drug that works best that doesn’t have really bad side effects! My heart is a little too important for me to mess with on nort. Keep me posted if your decision to go higher on gaba helps you as well - I’m a bit behind you in the gaba testing! :slight_smile:

You might want to search for the user “muppo” on this forum because she had a lot of success on a higher dose of gaba - whereas some other people were lucky with lower doses. Here I go back to square 1… !

Liv xx

P.S. Jess, I’ve pasted what someone posted on this forum when I searched for “gabapentin”- maybe we should target at least 900mg a day after a few weeks? Some people I’ve read only got relief at 1800mg/day split in three doses. I only have 100mg pills so obviously I will have to take a while if I’m going that high (I would need my dr to call in 300mg pills…since that’s way too many 100mg ones to take!) :

NotchomaFeb '13:

I have been on this for 4 weeks and it wiped out almost all of my symptoms. I am currently on 900 mg, and am due to increase in one more week. I am very happy with this medication and can not believe how well it has worked for me.

Again, I am so glad the Gabapentin is helping you. I am only taking 100 mg once a day since the end of October. I will probably be increasing it soon, but very slowly. I have no interest in getting on a high dose, as I heard it is hard to get off of and I am absolutely sick of that. I’m still trying to taper off the benzos as I’m still on Librium. But I was told the Gabapentin would help with my Librium taper. Honestly, if it were up to me, I’d be off all these stupid meds. I’m so done with them.

I had my first physical therapy session Wednesday. As I knew, all the muscles from the back of my head to at least my shoulders, if not further down my back, are extremely tight and tense. The PT spent the whole time on my neck, head, and TMJ and showed me some neck stretches to do. Next visit we will work on balance exercises as well. (oh joy). I felt better that night, but a little nauseous, I think it somehow gave me heartburn or I pulled a muscle close to that area, I’m not sure, need to talk to him about that. But I felt better dizziness wise that night, but felt worse the next day. I know with these exercises I will probably be feeling worse before better, but I can control it and it’s much better than another new medicine.

Hi Jess, Yeah, I know what you mean about drugs. I honestly don’t really care at this point about how hard it will be to get off Gabapentin if it makes me feel normal (ish) - I am happy to take it as long as I have to!! I’m so tired of MAV. I’ve tried to figure out dietary triggers, the works, but nothing seems to help except medicine. I’ve had massages, etc. It all helps to release stress but doesn’t address the underlying over-excitablity of nerves…

The Gabapentin is the first drug in which I am able to function semi-normally and not have constant swaying sensation under fluorescent lights as well as increasing head pain and pressure. Topamax helped a little, nortriptyline more, but this one seems to be channeling electrical activity in the right places again.

There are some things still there in the background, so I know that the MAV is still there but it’s being majorly suppressed by Gabapentin. I am also only on the lowest dose (100mg 3x a day), so I hope that the drug will cause the nerves to chill out and my neurologist hopes I can get off the medicine

For now, I really need to get some sense of normal feeling back because I really need to continue my work.

The thing is, which I think is really important about how Gabapentin might not be working for you very well just yet, is that it needs to be given in 3 daily doses because it has such a short half-life–so if you are only taking 100mg at night, you’re not going to feel that during the day I don’t think as it wears off.

It has to be taken every 7-8 hours or something, so I take it around 8am, 2pm, and 10pm. I found that the first day it wasn’t that useful, I was a bit more dizzy in a different way, but then it started to sink in maybe because my blood level of it was getting stable on it…

I’d recommend trying to take it three times a day for at least a week and see if helps you feel any better. It’s made me a LOT less sensitive to lights and other stimuli even at this dose. I am trying to stay low so that as you say it won’t be too hard to come off of - I haven’t heard it’s addictive though, as long as you titrate downwards slowly just like you go up on it. I think at less than 300mg a day you can just quit it without titrating downward though.

I’m supposed to go horseback riding again tomorrow so I’ll have to see if will work in that type of situation - Hope so! Hope you feel better xx