Living with Neuropathy - Welcome to the group

Welcome Evie @archermac15, Since you didn't have any bad reactions from the Gabapentin when you were on it before, do you think it might be an allergic reaction from the Emgality? Have you discussed the chest pain with your doctor?

@jeffrapp Agreed, it is a big list. The only secret teacher I know is Dr. Sletten. I wish I could offer more.

Please give yourself a pat on the back for thinking outside of the box. I admire your determination and proactive search of self help tools. Celebrate your small wins. I'm rooting for you!

@archermac15 Hello, Evie, I'm Rachel, it's nice to meet you.. I've taken Emgality injections for migraines but never experienced chest pain. Do you work with a neurologist who prescribes both Emgality and Gabapentin? Have you let your doctor know about the chest pain?

You mentioned exercising helped RLS in the past? Do you continue to exercise?

Yes, I just spoke to him right now. I got the injection on the 9th of this month and the next couple of days noticed chest tightness. I still would get migraines. I woke up a few times with chest pain. He also prescribed Prampexiole for the restless leg syndrome and neuropathy, but that caused pain on the left side of my chest. I only took two pills and then quit. It did seem to help. On Thursday I spoke to my Psychiatrist and told him how much pain I'm in and he prescribed the Gabapentin and it helps, but again I'm getting chest pain. It seems like it has increased. The Neurologist said that the Emgality doesn't cause chest pain, but I looked it up online and it says it causes chest tightness. This all started with the Emgality. Now everything I take besides my usual medications such as Tylenol, aspirin, Prampexiole and Gabapentin seem to increase my chest pain. I haven't taken Gabapentin all day and I'm in so much pain. And I'm on pain medication for chronic neck and back pain but that stopped working because I've been on the same dose for 16 years.

Yes, I started exercising my legs and stretching and that helped, so when I first was prescribed the Gabapentin at 400mg 4 years ago, I used it once. Then my Neurologist prescribed me Baclofen and Topiramate to help with my Migraines and the Baclofen which is a Muscle relaxant really helped with the RLS but it's been 3-4 years now and the restless leg syndrome has come back worse then ever. I continue to exercise and stretch but it still is very painful and now I have the Neuropathy in my fingers and toes. Does anyone have any advice?

I meant to write that besides my usual medications, everything else I take such as the Prampexiole, Excedrin migraine, and Gabapentin cause me chest pain. My Neurologist said that the Gabapentin shouldn't cause chest pain either but if I want to wait until the Emgality is out of my system then I could do that. I've been taking Baclofen and Topiramate for 3-4 years for Migraines and they have helped but not that much anymore, but if I try to stop, I can't sleep. I'm on so much medication that I would like to get off of. It's so hard when you have chronic pain and can't sleep. It's not just migraines, I have damage neck and lower back and I'm also seeing a pain management Doctor but he won't increase the medication.

@archermac15 My dear, my dear, my dear, Evie. I hear all of what you're saying and want to help. You're central nervous system is in overdrive and oh how I understand what you are experiencing. I too was a hot mess from small fiber neuropathy, on ample meds, receiving multiple injections for migraine, neck, back and hip pain, ablations, infusions, doctor after doctor and just basically chaos in my body which caused anxiety, depression and frustration. My life box got very small between age 46 and 49 and I needed to figure it out.

I'm sorry that you have been dealt this hand. I'd like to share helpful information with you that helped educate me and turn my life around allowing for better success and management of chronic pain and symptoms.

Here is a video by Mayo Clinic's Dr. Sletten presenting on Central Sensitization Syndrome (CSS):

- https://www.youtube.com/watch?v=vJNhdnSK3WQ

Will you please watch and let me know if any of what you learn resonates and makes sense to you?

Pain from lumbar neuropathy and dizziness/lightheadedness which goes away when I sit down or drive .
Roger Gaby Deltaville

Roger Gaby. 79 years old. History of. Prosthetic mitral valve 2008, transcatheier mitral valve replacement 2021. Presenting with lumbar stenosis and peripheral neuropathy. Symptoms- difficult to walk, extreme lightheadedness and dizziness upon standing not present when sitting or driving. Orthostatic HP ruled out ( not present) . This problem is making life unbearable. Neurologists are baffled.
Please help. Roger Gaby

Hello Roger @gabyroger, Welcome to Connect. You mentioned Orthostatic HP was ruled out. From what I've read, I think Postural orthostatic tachycardia syndrome (POTS) is another condition that can affect your blood flow and cause dizziness when standing up. Here's some information I found that sounds similar to the symptoms you describe.

"Dizziness or light-headedness when standing occurs in about 20% of older people. It is more common among people with coexisting disorders, especially high blood pressure, and among residents of long-term care facilities. Many falls may result from dizziness when standing. Older people should avoid prolonged standing.

The increased incidence in older people is due to decreases in the responsiveness of the receptors that manage blood pressure plus increases in arterial wall stiffness, which make it more difficult for arteries to move more blood to increase blood pressure. Decreases in receptor responsiveness delay the normal heart and blood vessel responses to standing. Paradoxically, high blood pressure, which is more common among older people, may contribute to poor receptor sensitivity, increasing vulnerability to dizziness when standing." --- Dizziness or Light-Headedness When Standing Up: https://www.merckmanuals.com/home/heart-and-blood-vessel-disorders/symptoms-of-heart-and-blood-vessel-disorders/dizziness-or-light-headedness-when-standing-up

Postural Orthostatic Tachycardia Syndrome (POTS): https://my.clevelandclinic.org/health/diseases/16560-postural-orthostatic-tachycardia-syndrome-pots

There is also a discussion on POTS if you want to view what others have shared --- POTS - postural orthostatic tachycardia syndrome: https://connect.mayoclinic.org/discussion/pots-postural-orthostatic-tachycardia-syndrome/

Have you thought about seeking help at a major teaching hospital or health facility like Mayo Clinic?