Living with Neuropathy - Welcome to the group

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?

Has your doctor checked your ferritin level recently? If it is below a certain threshold, then iron supplements are proven to be helpful in reducing restless leg syndrome. The threshold for efficacy is above the cutoff for iron deficiency. I took carbonyl iron because it is easier on the stomach and less likely to cause constipation.

@rwinney, thank you for your sweet and helpful message. I did watch the video and it makes a lot of sense. I've had chronic pain since 1993 and migraines since I was a child. My neck was damaged slightly when I was 14 and then in 93' from a work accident, then in 2000, I got into a car accident that really messed up both my neck and lower back, but by 2004, it was all over when I got my leg stuck in an earthquake crack one night and fell flat on my butt. Every few years I get a new MRI and it's worse. I'm on the same dose of pain medication for 16 years and I get injections in my neck and back that do help and I love with the chronic pain. The restless leg syndrome started in 2018 and I was able to manage it, through exercises, but lately it's become unbearable. Too painful. I realized the Gabapentin is also causing me chest pain. I thought it was just the Emgality injection, but the Gabapentin is causing my heart to race and my chest is hurting so bad. I take 1mg of Levothyroxine, 60 mg of methadone for pain, 40 mg of Baclofen and 75 mg of Topiramate for migraines and 2mg Klonopin for anxiety. I was taking Lexapro for depression and anxiety but I stopped that in late December. I don't know if that may have contributed to this or maybe I am low in iron. Either way this nerve pain in my legs is too painful.

No, I'm going to get my blood tested for that. Where do you purchase your iron supplement?

Hi, my name is Merce. I signed up over a year ago but haven’t been very active. Many times I find it overwhelming to deal with many of the issues that are posted/discussed.

My husband has been undergoing chemo treatment for nasopharyngeal cancer for almost two years. He has developed neuropathy of hands and feet - numbness but no pain. The three remaining chemo treatments will consist of taxol which will aggravate his condition.

Does anyone can suggest OTC topical preparations that may provide him some relief.

Thank you.

A 6percent lidocaine prep does wonders for me. Since it is higher than 5 percent you need a compounding pharmacist to prepare it.

The ferritin level should be 75 ug/L or higher to provide relief of RLS. I bought the iron supplement at Walgreens. The iron should only be taken under medical supervision and if the ferritin level is below 75. (It's not a good idea to supplement with iron unless there is a definite medical indication.)

@mtborz Hi Merce, thank you for posting. I understand that some topics can be overwhelming. The good news about Connect is that you can choose what notifications you receive and choose to participate in. Taking breaks when you need is good also.

I'm inviting @johnbishop to the conversation in hopes he can offer assistance. John has neuropathy with numbness and no pain.

I came across a small study that suggests cryotherapy (ice treatments) on hands and feet before and after Taxol chemo treatments may help symptoms. What does your husband's doctor recommend?

Good evening @wwenerowicz and @mtborz .....you know...I also find medical terminology a bit hard for me to both remember and understand. I try to keep things simple. Anyway.....I used a lidocaine compound for several years. My neurologist kept making changes to keep up with the pain progression and tingle tangles in my hands and arms. I have SFN (small fiber neuropathy) and it has its challenges.

I now use medical cannabis tinctures and topicals for pain control. Yet, I do have a colleague @johnbishop who has SFN with no pain. Perhaps he will be able to share with you the types of medications he uses for his symptoms.

May you and your husband be free of suffering and the causes of suffering.
Chris

Hi Merce @mtborz, I know it must be difficult for you and your husband having to deal with side effects of the treatment. I have some numbness in my fingers and feet due to neuropathy and so for haven't found any real help from OTC topicals. I do think it's important to keep your hands and feet moisturized with a good skin lotion which makes sense because the peripheral nerves being affected are close to the skin.

I think what @rwinney suggested may be something to reach out to your husband's care team and see if it could be an option for him to try for his three remaining chemo treatments. Here's an article from 2017 on the topic -- Cold therapy may be effective at controlling cancer treatment side effects: https://www.sciencedaily.com/releases/2017/10/171012111440.htm

I also found some information on supplements which may be helpful and you might want to discuss them with your husband's care team --- "Another study found that vitamin E was effectively and safely protected against neuropathy in cancer patients treated with taxol [10]. Most side..." --- Comparison of the Effects of Omega 3 and Vitamin E on Palcitaxel-Induced Peripheral Neuropathy: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6236056/

Hoping you find something that provides him some relief.