Autonomic Neuropathy Meds

[worththewords]

My mom was diagnosed with autonomic neuropathy after finishing chemo treatments. The neuro put her on mestinon and it really helped her with her symptoms. However, she has the wobbles, gets close to fainting, and sometimes does faint. However, I must say she does ignore her warning signs. For example, one day she told me she was dizzy and she didn't look so good. I told her to sit down and she kept walking and passed right out. So in some ways she is her own worst enemy.

Anyway, after being on mestinon awhile her fainting started increasing and she had zero energy. I swear I developed inspector gadget arms (go go gadget arms!) and I was running around catching her all the time so she didn't hit her head on anything. She did a holter monitor and it showed her average HR was 40 and she spent the majority of the 24 hour holter in the 30's-40's. Her cardiologist scheduled her for a pacemaker then realized maybe the mestinon was causing it. She went off the mestinon and the HR came up to about 55. She still wobbles and almost faints and had one fainting spell off mestinon. Both neuro and cardio wanted her just to stay off meds, however, the joint pains and muscle aches were too much.

The neuro doesn't entirely believe the mestinon is the cause of her low HR and put her back on it. Her neuropathy symptoms went away but now the cardio wants her to try other meds because it isn't healthy to keep her HR so low. They are both scratching their heads on what meds though.

Just curious, besides mestinon, what helps for autonomic neuropathy? And knowing it can lower your HR makes me want to take mestinon, my resting heart rate is in the low 100's. If only my mom and I could just divide up our heart rates, we would be in good shape.

[flop]

Hi Alexia,

sorry to hear that your Mom is ill following her chemotherapy, hopefully she will find a med combination that is right for her.

Dysautonomia is a wide term covering several conditions, POTS and autonomic neuropathy are both forms of dysautonomia. Some of the meds that help POTS patients may well help your Mom. It would be useful for her doctors to do tilt test and work out if she pools blood, has orthostatic hypotension or other autonomic symptoms. Test results should help guide her doctors in choosing meds for her. Try reading the main website and see what suggestions are discussed there.

Flop

[ajw4790]

Hi!

I don't know a whole lot, but they were talking about putting me on Neurontin for nerve pain and other neuropathy symptoms. But, if it is the cardio. symptoms that you are looking for meds for that won't likely help.

With the bradycardia and possible need for pacemaker they likely don't want to try a lot of the cardiac meds as they may make things worse and not better, which is what a fair amount of the treatment is. They also likely don't want to mess with fluid balance, so that rules out some too.

Sounds like it is hard to find the right thing... I wish I could help, but it sounds like the drs. have thought it over and tried different things. The only other thing would be to see if they would consult with a doctor that specializes in these issues, or see a different dr. for a new set of eyes on the case to see if there was anything that maybe wasn't thought of at first. Although it sounds like they have considered everything pretty well.

Good luck!

[lloppyllama]

Like ajw4055 said, Neurontin (or generically Gabapentin) is another medicine used for that type of illness. I was put on it before being diagnosed with POTS, and it made me really high/ out of it. I couldn't walk i had to be carried out of church, and i just kept fainting/falling over. It really freaked my best friend out.

So that is one you could look into if you are looking for something for more the other nerve problem type things.

Good luck!

[doctorguest]

Mestinon can absolutely cause bradycardia. This med may not be appropriate for your mom. As to what else is available depends on what type of symptoms the doctors are trying to address. If it's neuropathic pain, there is one path. If it's fainting and orthostatic hypotension, there is another. I am glad that the pacemaker was avoided - it would have been a shame to have a pacemaker for bradycardia induced by Mestinon.