Tell me about your experiences with this drug the doctor wants me to try this and I am not sure…
Hi Timeless,
I found it just put me to sleep , all day.
I could only get up to 300mg a day, that’s a small dose.
most anticonvulsants tend to give me asthma.
it didnt do much for my mav at such a low dose.
I found it It’s a gentle medication on my system, it dosnt do your head in like other antiC’s.
jen
Well I do not want to sleep all day that would not be a good thing for me…he wants me to start at 100mg but I am very nervous …I am having more test done and then on to see a specialist at Emory but I would prefer to wait until the test are complete and then see what the specialist suggest instead of starting and stopping and starting over again.
Timeless,
This was a medication that was suggested to me, but I never ended up filling the presription b/c I ended up seeing another doctor who put me on Cymbalta instead. The doctor who prescribed it said that it is a rather gentle med (nothing like Topomax) and he used it for back pain with really good results. I too was prescribed 100 mg, which is a very low dose. This doctor was taking 1000 mg a day and he said he felt fine. I haven’t heard anything too negative about it, so maybe it’s a good one to try.
Good luck!
Hello!
Although I’ve never personally tried neurontin, it is definitely one of the more tolerable drugs with little side effects. I read one study looking at MAV patients who were treated with 100mg of neurontin twice a day along with vestibular rehab and did really well. Most docs use it to treat neuropathic pain (especially trigeminal neuralgia) with good effect, but at MUCH higher doses.
Good luck! Keep us posted.
Best,
Lisa
I am currently on 300 mg of neurontin 3x/day. Each time I increase my dose, I get very sleepy and more dizzy than I normally am. The tiredness feels like I’ve overdosed on nyquil. Really tired & spacey feeling. Usually within 3-4 days the side effects start to subside. I’ve been on it for almost a month now & my MAV symptoms haven’t improved yet. I was hoping to see some change by now but I’m only at half the dose that the doctor recommended. According to the dr’s dosing schedule, I should have been at my full dose now but I’ve had to titrate up slowly as I’m very med sensitive. I haven’t had any other side effects on it, so I would say it’s worth a try.
Hi Dizzygrl,
Sorry you have not had much improvement yet, but am glad you are tolerating the dose increases. It seems like this is half the battle with all these meds. I was wondering what other drugs and your experiences with them you have tried before neurontin? I really hope this works for you. Also what dose does is your doc trying to get you to?
Thanks and good luck:-)
Lisa
Lisa–The doctor wants me to get to 600 mg 3x/day. I feel like I’ve had some slight improvement but it’s hard to tell because initially the medicine made me feel worse than being unmedicated! I’m trying to be patient and wait it out but it’s so hard when you’re sitting at home with the world going on without you. Prior meds–I’ve been on amitriptyline but switched to nortriptyline because of tiredness. Was on nortriptyline for almost a year & felt 80% most days. Extremely fast heart rate made me come off of it. Then I tried toprol & was starting to feel really good on it until it gave me bad heart palpitations. Or so I thought. I’ve been off the med for a month & I’m still getting the palpitations. Now I’m wondering if I should have stayed on the toprol. 
I guess I’ll never know. As if this MAV crap wasn’t enough to put up with…the palpitations are driving me crazy!
Hi Dizzygrl,
Thanks for sharing your med history with me. It’s good to know your body and symptoms respond to these meds so I have full confidence you will find something that helps your symptoms while agreeing with the rest of your body. It’s interesting that two different classes of meds affected your heart rate in a somewhat similar way. What did your doc say about this? Did he/she ever send you for a cardiology consult or have you wear a 24 hour holter monitor to see just when and where the symptoms were coming from? If I am asking too personal questions, I apologize and feel free to answer them or not. (I suppose I should disclose I am a medical doctor but these days I am unable to work and have been suffering from dizziness for 15months and have recently been diagnosed with MAV 15 days ago).
I wish you and everyone else the best!
— Begin quote from “MAVNY”
Hello!
Although I’ve never personally tried neurontin, it is definitely one of the more tolerable drugs with little side effects. I read one study looking at MAV patients who were treated with 100mg of neurontin twice a day along with vestibular rehab and did really well. Most docs use it to treat neuropathic pain (especially trigeminal neuralgia) with good effect, but at MUCH higher doses.
Good luck! Keep us posted.
Best,
Lisa
— End quote
Thank you for the response …I understand you are a physician so I am sure your knowledge in based in your education and first hand knowledge about the medication.
Have you tried any medications yourself yet and if so what have you found that has been beneficial to you. I appreciate your input and knowledge that you will bring to the board. I feel like I should call you Dr. Lisa…just the way that I was raised. :mrgreen:
Thanks
Tammy
Hi Tammy,
You are funny. On this forum, I too am just like everyone else, a MAV patient, so Lisa will do:-) I am just beginning this journey of treatment for MAV. Although I have been suffering with debilitating dizziness, like so many of us, it took awhile to get this diagnosis. For me, I started my first med only 15 days ago as that is when I was diagnosed. I have read all the studies on MAV and medication and my first choice of med to begin was verapamil. Luckily my doctor agreed and uses this as a first line treatment with most of his patients. He is very knowlegable about MAV and I trust him very much. I was a little concerned as my bp and pulse are low but my doc started me on just a teeny dose at 40 mg per day. I am also pretty light and many meds can be dosed based on bodyweight (mg/kg). I am on day 15 and have not suffered any side effects (which I did not expect), but I haven’t really seen much improvement yet. I will wait 4-6 weeks before evaluating the efficacy of this med. I am hoping to get a little relief and then increase the dose at this point. I am open to other meds in the future, as this illness just stops your life in it’s tracks. I want to give verapamil a fair trial before moving on to the next (which I am hoping on don’t have to do)!
Keep us posted with your progress. Good luck! We all could use a little bit of that with this condition.
Lisa
Hi Lisa!
Yes I’ve had all the cardiac tests…2 week holter monitor, stress test, EKG, ultrasound of my heart, etc. None of these showed anything out of the ordinary. These tests were all done before going on meds due to palpitations and the dizziness which I now attribute to MAV. The nortriptyline gave me a resting heart rate in the 120’s (which is listed as a side effect) and I went off of it at about the 10 month point. The toprol made my palpitations flare up…or at least that’s what I thought at the time. Now I’ve been off it for a month & I’m still having palpitations. Now I’m not sure it was the toprol at all. Don’t really know what to do. Have been on neurontin for a month & not seeing any real improvement. My doc just emailed me today & said I should go off neurontin and start effexor. After reading all the posts on this board, I’m really scared about the effexor. Ugghh…this is so frustrating!