DAB19 Posted June 14, 2018 Report Posted June 14, 2018 I saw my rheumatologist today for the first time since my diagnosis of POTS in February. He thinks a lot of my most bothersome symptoms could be helped with Gabapentin aka Neurontin. He said he's starting me off at a very low dose and I won't likely feel any effect until we get to at least 300 mg. He plans on increasing the dosage incrementally over the next couple of weeks. I am a little hesitant to start the Gabapentin because when I was first diagnosed with POTS my cardiologist at the time assured me that Cymbalta was going to help me, after only one dose of the Cymbalta I ended up in the ER with a bad reaction. Has anyone tried Gabapentin? Did you notice a difference? Did it help? Did it make anything worse? Were there any bad side-effects? Thank you in advance for your answers! Quote
StayAtHomeMom Posted June 14, 2018 Report Posted June 14, 2018 My mom takes that for her osteoarthritis (she also has RA) as far as i know it is a medication that helps with nerve pain. Do you know why he thinks it may help. Just curious. The only insight i have is my mom doesn’t like it much. She is supposed to take it teice a day and only takes it once before bed. Quote
DAB19 Posted June 14, 2018 Author Report Posted June 14, 2018 58 minutes ago, StayAtHomeMom said: My mom takes that for her osteoarthritis (she also has RA) as far as i know it is a medication that helps with nerve pain. Do you know why he thinks it may help. Just curious. The only insight i have is my mom doesn’t like it much. She is supposed to take it teice a day and only takes it once before bed. He thinks it might help my severe muscle spasms and temperature sensitivity, tingling in the extremities, brain fog, and flushing. He told me to start taking it in the evening before bed, and we will increase the dose next week. I'll start taking it tomorrow evening, I hope it helps, even if its just a little bit. Quote
Guest KiminOrlando Posted June 14, 2018 Report Posted June 14, 2018 I take 200 mg at bed time. It does help some with pain. I was on 300 mg 3x a day. It made me feel drugged like I couldn't think straight. I had to cut back. It may help you, but it doesn't help everybody. Certainly worth a try. Good luck. Quote
StayAtHomeMom Posted June 15, 2018 Report Posted June 15, 2018 On 6/14/2018 at 1:08 AM, DAB19 said: He thinks it might help my severe muscle spasms and temperature sensitivity, tingling in the extremities, brain fog, and flushing. He told me to start taking it in the evening before bed, and we will increase the dose next week. I'll start taking it tomorrow evening, I hope it helps, even if its just a little bit. Let me know. Those are issues that are not bothersome to me now but would be interesting if they cycle back around. Good luck. Quote
statesof Posted June 16, 2018 Report Posted June 16, 2018 Hi @DAB19 I was on gabapentin for a short stint just to see if it would help with any of my symptoms, I believe for 3-4 weeks. I was on the 300mg dosage as my doctor wanted me to try a low dose of it first as well. For me it didn't hurt or help anything, its affects felt a little like a benzodiazepine, for me for the first week I just felt more calm almost like I was on a benzo. While I was on it, it didn't have any negative side effects, I don't know what the long term effects on being on gabapentin are though. Quote
DAB19 Posted June 25, 2018 Author Report Posted June 25, 2018 On 6/15/2018 at 6:21 PM, StayAtHomeMom said: Let me know. Those are issues that are not bothersome to me now but would be interesting if they cycle back around. Good luck. UPDATE: I've been on the Gabapentin about a week and a half now. I started at 100mg and increased to 200mg this past Thursday. The muscle spasms are still bothersome but I think I get them less often. My first dose of the gabapentin caused a severe migraine but I haven't had one since. I'm hoping that as I continue to increase the dose I start feeling the effects more and more. My rheumatologist put me on the gabapentin, but I happen to have a new patient appointment with a neurologist coming up this week to discuss my neuromuscular symptoms. I'm hoping the neuro will have some ideas to help manage my symptoms. Quote
Pistol Posted June 26, 2018 Report Posted June 26, 2018 Thank you for updating us - I hope all will be well with the new neuro. Quote
Roxy Posted June 26, 2018 Report Posted June 26, 2018 Gabapentin is no good for me but it works great for my son. Quote
StayAtHomeMom Posted June 26, 2018 Report Posted June 26, 2018 Thanks for the update! I hope you find some answers with your neurologist. Quote
Hope A Posted December 11, 2021 Report Posted December 11, 2021 My dysautonomia left me with low pulse, low blood pressure, and the sleepiness and fatigue that were insurmountable at times. I would have to sleep for a while to continue on with my day. I’ve been dealing with it for 30 years, so imagine my surprise when I was put on Gabapentin at urgent care, after a fall that caused herniated discs in my neck; and it raised my pulse by 20 to 30 beats per minute! I was fighting nerve and muscle pain, but I was AWAKE. I can stay awake after meals and work for hours on end around my home ,and then still walk the dog. I am dumbfounded. The amount of cardiology and neurology appointments I’ve had since I was 14 years old somehow never got me to Gabapentin. My sister and brother have disabilities from different forms of dysautonomia, RSD and MS which are far worse than my version. They WERE both prescribed Gabapentin but it made them too sleepy to continue with it. My reaction seems very weird as I’m much more awake and normalized. Fascinating I wAs able to get surgery in 5 weeks but the results remain so far. I’ve now been off Gabapentin for 7 days and the pulse is still at record high numbers. My pressure was still quite low during all the surgical pre op tests but the pulse has stayed up, as has my energy and ability to stay awake. I can’t understand why it hasn’t dropped back down, but perhaps my autonomic system reset somehow. 🤷🏻♀️ I would definitely give it a try if you have POTS, worst case you get really sleepy or it doesn’t help. My change has been nothing short of miraculous. Good luck! Quote
Pistol Posted December 11, 2021 Report Posted December 11, 2021 Thanks for sharing @Hope A - what an amazing success story! I wish you well and that the improvement continues. Best of Luck! Quote
CallieAndToby Posted December 11, 2021 Report Posted December 11, 2021 Everyone is different. I found gabapentin to be incredibly sedating especially next day and I just couldn't tolerate it. But some people don't have this issue. Quote
edriscoll Posted December 11, 2021 Report Posted December 11, 2021 Gabapentin has been a life saver for me. I had nerve pain that was debilitating and Gabapentin has made those symptoms manageable. Coincidentally, I too had a terrible reaction to Cymbalta. It affected my equilibrium to the point where I couldn't walk. It was awful. With Gabapentin, in my experience, it took time to acclimate to the medication. It made me feel very tired and sometimes affected my dreams and sleep in general. However, it went away as my body got used to the medication. I stopped taking it in the morning to minimize the fatigue. Taking it during the day (after lunch) and before bed works well for me. My husband was recently prescribed gabapentin also and has had a similar experience. He started taking it in July, with good results, but experienced the same fatigue and dream disturbances. Those side effects resolved around November. Best of luck. Quote
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