COVID vaccines and neuropathy

Posted by cue @cue, Feb 15, 2021

I am 85 with small fiber neuropathy that is getting worse. My neurologist thought it would be a good idea for me to wait with the covid vaccine and not be first in line to see how it affected other people with neuropathy. Probably because it is a new technology. Has anyone had a problem with neuropathy after receiving the vaccine? If so, which vaccine?

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@jimhd

@avmcbellar There are a couple of reasons for considering a pump, the primary one being replacing oral medications with more effective intrathecal delivery. The research I've done has indicated that the pump requires as little as 10% of the oral dose. Of course, there's not a lot of certainty in any medical treatment, as no two people are the same. My neurologist mentioned to me this morning to ask about the possibility of a bolus delivery option to treat breakthrough pain. I understand that once the therapeutic dosage is determined, it works automatically, and is a safer treatment in terms of abuse or overdose.

My wife and I are scheduled to get the vaccine on the 30th. I'm more than a little concerned about the impact it might have on my neuropathy. I don't know which one is being offered here, and I need to schedule an appointment for the 2nd shot.

I've never had any reaction to vaccines until the 2nd shingles vaccine a month ago. The injection site is still sore if I lie on my left side, though I didn't have any immediate reaction. I'm hopeful that the covid vaccine will be effective but benign.

You wrote in the past about eye exercises. I asked my neurologist about that, as well, and he put in his notes to consider it, whenever I'm ready. Prisms corrected the double vision for a month or so, but it returned, and sometimes I see 3 images. When I asked the ophthalmologist what else can be done, he said get used to it. Not a very helpful response. Perhaps you could recommend some research on the subject. Preferably in layman's language.

Jim

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Hi Jim @jimhd I don’t know how less medication is given through a pump verses taken orally. Unless the route makes a difference. The pump provides the medication to be delivered quicker by IV than by the mouth method. The IV method produces quicker effects of the medication.

Neuropathy and the reaction of the vaccine is a big question for everyone. There are so many unanswered questions. I am afraid because I don’t want my condition to worsen and we don’t know in the long run( months to years) what the lasting effects will be. This vaccine involves new technology affecting our genes. I don’t know exactly how DNA test results are handled for people who have received the vaccine(s) and want to find their ancestor history.

Yes, I did see an improvement with eye exercises. Did you visit a neuro ophthalmologist? I have gone through 2 neuro ophthalmologist. The 2nd doctor I have been seeing for the last 2 years. I did not mention eye exercises to him so I don’t know his thoughts on the matter. During my last visit I did question him about a surgical correction. I will see him again in the summer for another assessment. He performs measurements. I hope he finds a better outcome. Improvement on your double vision is dependent upon finding the cause and if eye exercises will help. Is there a chance any of your medications can be causing your double vision? It is difficult to deal with. Wear a prism if you have to. A prism will not offer help to me so I deal with the motion sickness as a result of my double vision. I may have the option of a prism if an over adjustment is made during my surgery.

I currently order glasses online( after trying them on) from a company in California. There is a provision to include a prism if needed. I have ordered bifocals with the prescription the neuro ophthalmologist gave me. They are much more affordable. In fact, I am waiting for delivery on my reading glasses soon.

I will mention eye exercises to my ophthalmologist and see what he says. I am also waiting to hear back from a website that offers exercises to improve neuropathy through wearing VR(virtual reality) goggles. They may be able to help with the double vision as well. I know VR goggles can help a treatment for double vision. Take care. Toni

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@avmcbellar

Hi Jim @jimhd I don’t know how less medication is given through a pump verses taken orally. Unless the route makes a difference. The pump provides the medication to be delivered quicker by IV than by the mouth method. The IV method produces quicker effects of the medication.

Neuropathy and the reaction of the vaccine is a big question for everyone. There are so many unanswered questions. I am afraid because I don’t want my condition to worsen and we don’t know in the long run( months to years) what the lasting effects will be. This vaccine involves new technology affecting our genes. I don’t know exactly how DNA test results are handled for people who have received the vaccine(s) and want to find their ancestor history.

Yes, I did see an improvement with eye exercises. Did you visit a neuro ophthalmologist? I have gone through 2 neuro ophthalmologist. The 2nd doctor I have been seeing for the last 2 years. I did not mention eye exercises to him so I don’t know his thoughts on the matter. During my last visit I did question him about a surgical correction. I will see him again in the summer for another assessment. He performs measurements. I hope he finds a better outcome. Improvement on your double vision is dependent upon finding the cause and if eye exercises will help. Is there a chance any of your medications can be causing your double vision? It is difficult to deal with. Wear a prism if you have to. A prism will not offer help to me so I deal with the motion sickness as a result of my double vision. I may have the option of a prism if an over adjustment is made during my surgery.

I currently order glasses online( after trying them on) from a company in California. There is a provision to include a prism if needed. I have ordered bifocals with the prescription the neuro ophthalmologist gave me. They are much more affordable. In fact, I am waiting for delivery on my reading glasses soon.

I will mention eye exercises to my ophthalmologist and see what he says. I am also waiting to hear back from a website that offers exercises to improve neuropathy through wearing VR(virtual reality) goggles. They may be able to help with the double vision as well. I know VR goggles can help a treatment for double vision. Take care. Toni

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I am a person with increased neuropathy symptoms, I believe associated with getting the Covid vaccine. However, I urge everyone to closely look at the facts at least out there now and certainly speak with your doctor. The vaccine is RNA based. It has nothing to do with our DNA and cannot affect our genes. That being said, the vaccine is clearly impacting many people in unexpected ways that needs documenting and assessment of likely causes. https://www.cdc.gov/coronavirus/2019-ncov/vaccines/facts.html

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@artist01

@jimhd Hello Jim
Nice to meet someone else who loses almost-typed messages on Mayo Clinic Connect site! I checked it out with my server and was told it was the fault of my phone, and no help was provided through them. I've learned my own devious method of retrieving my unfinished message, as follows:
1. Click on the three small vertical lines at bottom left of screen;
2. Three or more smaller screens you've previously worked on appear;
3. Scroll sideways to locate your "lost"
screen;
4. Click on that screen, and Voila!
You're back where you can finish!
Good luck, Jim. Let me know if this works for you. My best, Laurie

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@artist01 I use my phone almost exclusively, and don't have the 3 bars anywhere on my screen. My redo is pretty much always much shorter than the one I lost - for one thing I don't remember what I wrote.

@avmcbellar the neurologist told me yesterday that neurosurgery has a low chance of affecting double vision. I guess I'll just live with it for as long as I can. The two times it's distracting are looking at lights at night, and working up close on something, like when I'm lying on my back under the tractor. Sometimes it interferes with reading.

The intrathecal pump delivers the medication directly into the blood system, so I get the full effect. That's my understanding. The neurologist is much in favor of getting one, but for some reason my wife objects to it. It would avoid forgetting to take my morning meds, which I did today, and now I'm waiting for my wife's physical therapy is done, then a stop at the grocery store and another stop to get lunch. I forgot to take them yesterday. It was after 2pm before I got back home, and will probably be about the same time today. By noon I start feeling like my blood sugar is low.

Jim

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Just saw this announcement in my latest email from The Foundation for Peripheral Neuropathy.

NeuroVoices: Barbara Karp, MD, and Sharon Meropol, MD, on NeuroCOVID Databank: https://www.neurologylive.com/view/neurovoices-barbara-karp-md-and-sharon-meropol-md-on-neurocovid-databank

NIH launches database to track neurological symptoms associated with COVID-19: https://www.nih.gov/news-events/news-releases/nih-launches-database-track-neurological-symptoms-associated-covid-190

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@jimhd

@artist01 I use my phone almost exclusively, and don't have the 3 bars anywhere on my screen. My redo is pretty much always much shorter than the one I lost - for one thing I don't remember what I wrote.

@avmcbellar the neurologist told me yesterday that neurosurgery has a low chance of affecting double vision. I guess I'll just live with it for as long as I can. The two times it's distracting are looking at lights at night, and working up close on something, like when I'm lying on my back under the tractor. Sometimes it interferes with reading.

The intrathecal pump delivers the medication directly into the blood system, so I get the full effect. That's my understanding. The neurologist is much in favor of getting one, but for some reason my wife objects to it. It would avoid forgetting to take my morning meds, which I did today, and now I'm waiting for my wife's physical therapy is done, then a stop at the grocery store and another stop to get lunch. I forgot to take them yesterday. It was after 2pm before I got back home, and will probably be about the same time today. By noon I start feeling like my blood sugar is low.

Jim

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@jimhd yes, the pump would provide the medication directly into the blood stream which will be a quicker route. Hopefully you won’t miss a dose. You just have to remember to push the button for your pain meds.
I wasn’t referring to neurosurgery causing double vision. In my case it was the AVM that was the cause but the repair resulted in neuropathy for me. For some folks the cause may be medication. Look at your medications to see if double vision can be a side effect. I would go to a neuro ophthalmologist NOT an ophthalmologist for help. Neuro ophthalmologists are few and harder to find. They deal with double vision and can tell you if yours is related to a nerve problem.
How soon will you be getting the pump? Wish you well. Toni

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@jimhd

@artist01 I use my phone almost exclusively, and don't have the 3 bars anywhere on my screen. My redo is pretty much always much shorter than the one I lost - for one thing I don't remember what I wrote.

@avmcbellar the neurologist told me yesterday that neurosurgery has a low chance of affecting double vision. I guess I'll just live with it for as long as I can. The two times it's distracting are looking at lights at night, and working up close on something, like when I'm lying on my back under the tractor. Sometimes it interferes with reading.

The intrathecal pump delivers the medication directly into the blood system, so I get the full effect. That's my understanding. The neurologist is much in favor of getting one, but for some reason my wife objects to it. It would avoid forgetting to take my morning meds, which I did today, and now I'm waiting for my wife's physical therapy is done, then a stop at the grocery store and another stop to get lunch. I forgot to take them yesterday. It was after 2pm before I got back home, and will probably be about the same time today. By noon I start feeling like my blood sugar is low.

Jim

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@jimhd My phone is a Samsung Galaxy S9, two years old now, and some phones don't have the small vertical lines at the bottom left. Does your phone have another way to retrieve several screens you've worked on? I'm like you, too - if I have to redo the message, it's short and sweet, cuz I can't remember half of what the original post said!
I think that pump sounds like a good idea for you, since you often miss your med times. Not good. It can be dangerous to have your blood sugars go too low. Been there, done that.
Just sayin'.
Take care, Jim. Warm regards, Laurie

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@johnbishop

Just saw this announcement in my latest email from The Foundation for Peripheral Neuropathy.

NeuroVoices: Barbara Karp, MD, and Sharon Meropol, MD, on NeuroCOVID Databank: https://www.neurologylive.com/view/neurovoices-barbara-karp-md-and-sharon-meropol-md-on-neurocovid-databank

NIH launches database to track neurological symptoms associated with COVID-19: https://www.nih.gov/news-events/news-releases/nih-launches-database-track-neurological-symptoms-associated-covid-190

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I read both webpages and it seems to only address symptoms in relation to the disease. Which of course is important. But doesn’t deal with the adverse responses to the vaccine.

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@athenalee

I read both webpages and it seems to only address symptoms in relation to the disease. Which of course is important. But doesn’t deal with the adverse responses to the vaccine.

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That’s kind of what I thought also. Not sure when or who gets to see the database but suspect not the general public 🙃

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I hope enough people actually report via vaers if they do get neuropathy flares. It’s vital for people who might be told by their employer that vaccine is now mandatory. Usually in those circumstances exceptions are made if recommended by a physician but unless there is some data to back up us up most physicians aren’t going to take a stand.

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I agree with you. I hope so too bc I am scared to get one. You don't know what the long term effects are.

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