The reason I was retested is I felt the metoprolol succinate was not doing any good. Not having diabetes in my family my glucose and A1C shot up along with kidney and liver enzymes. I was given a choice come off the metoprolol or take insulin shots. I came off of it. The testing on the heart monitor showed it was not helping the arrhythmias for the CAN- cardiac autonomic neuropathy. I have an RN degree I have spent a lot of time reading medical journals until I am sick of it trying to find answers for myself. Most people I speak with does not have neuropathy as advanced as mine.
Small fiber neuropathy and autonomic neuropathy- affects the organs- gastroparesis, bladder, kidneys, heart and so forth.
Severe sensorimotor peripheral polyneuropathy/
Autonomic neuropathy.
Mine is autoimmune. I tested negative for everything. Last resort we are doing a spinal tap for autoimmune disorders and proteins.
Truthfully, it’s frustrating. I could not imagine being young and having it. The tremors also affect my legs. My husband forbids me to cut up anything if I do I cut my fingers because I can’t feel them. I have gotten stitches several times. The best treatment is IVIG therapy and it takes approximately six to seven months to kick in. It also keeps it from progressing. What a lot of people will not tell you is about applying for patient assistance to get the price lower.
The reason I was retested is I felt the metoprolol succinate was not doing any good. Not having diabetes in my family my glucose and A1C shot up along with kidney and liver enzymes. I was given a choice come off the metoprolol or take insulin shots. I came off of it. The testing on the heart monitor showed it was not helping the arrhythmias for the CAN- cardiac autonomic neuropathy. I have an RN degree I have spent a lot of time reading medical journals until I am sick of it trying to find answers for myself. Most people I speak with does not have neuropathy as advanced as mine.
Small fiber neuropathy and autonomic neuropathy- affects the organs- gastroparesis, bladder, kidneys, heart and so forth.
Severe sensorimotor peripheral polyneuropathy/
Autonomic neuropathy.
Mine is autoimmune. I tested negative for everything. Last resort we are doing a spinal tap for autoimmune disorders and proteins.
Truthfully, it’s frustrating. I could not imagine being young and having it. The tremors also affect my legs. My husband forbids me to cut up anything if I do I cut my fingers because I can’t feel them. I have gotten stitches several times. The best treatment is IVIG therapy and it takes approximately six to seven months to kick in. It also keeps it from progressing. What a lot of people will not tell you is about applying for patient assistance to get the price lower.
@artemis1886
I was in my last job for 10 years but have worked over 34 years (currently 54). I don’t know what I am going to do if I get denied for disability since I don’t think I will be able to work. COBRA insurance coverage is so ridiculously expensive but I need coverage for my son and me due to medications needed, tests, etc.
I have POTS (diagnosed by tilt table test), and I’ve had it done twice. Are you only doing the tilt, or are you also doing the full series of autonomic nervous system testing? I did the autonomic nervous system testing, which included the tilt test.
It feels unpleasant because the tests are meant to provoke symptoms, but otherwise it’s not really painful per se. I have central sensitization (a chronic pain condition) so I generally felt fatigued and not great afterward because it’s a stress to the body, but I was functional.
My greater concern was that I’m a trauma survivor, so the idea of being in a room strapped to a table and monitors with a stranger was problematic, as you can imagine. I had to ask for help communicating accommodations to the tech doing the test.
@dancing1
I might need to get a tilt table test. I have small fiber neuropathy (SFN) and cardiolipid autoantibodies which show possibility for anti phospholipid syndrome (APS). APS is a higher risk for clotting. SFN can affect arteries/veins/capillaries and heart/blood flow. I am not aware of side effects of the tilt table test other than moving your body in positions to check vascular health/response to pressure changes.
I did have the test. I passed out right away. I have the neurocardiogenic syncope. I had passed out twice and I didn't know what was wrong with me. No alcohol, stay hydrated, check your blood pressure (ensure that isn't too low), potassium and sodium. I was diagnosed a long time ago and at this point I have not passed out again. I used to exercise during the morning and at lunch. I believe that that was part of the issue. They sent my sodium pills that you get at CVS if I felt sick and my blood pressure was low.
I did have the test. I passed out right away. I have the neurocardiogenic syncope. I had passed out twice and I didn't know what was wrong with me. No alcohol, stay hydrated, check your blood pressure (ensure that isn't too low), potassium and sodium. I was diagnosed a long time ago and at this point I have not passed out again. I used to exercise during the morning and at lunch. I believe that that was part of the issue. They sent my sodium pills that you get at CVS if I felt sick and my blood pressure was low.
I did not pass out yet I felt awful. My husband says I always understate my pain. Maybe I do. I was extremely nervous and had a hard time with the test. It’s been a week now but blood pressure was very low first two to three days but now normal again. I have been extremely fatigued. But it’s over. Thank you to everyone’s support and comments.
I did not pass out yet I felt awful. My husband says I always understate my pain. Maybe I do. I was extremely nervous and had a hard time with the test. It’s been a week now but blood pressure was very low first two to three days but now normal again. I have been extremely fatigued. But it’s over. Thank you to everyone’s support and comments.
That's understandable to feel fatigued, because it's such a stressor to the body and mind, regardless of whether or not it even elicits symptoms! I feel like physicians don't really take that into account. My sister told me that people with chronic pain tend to underrate our pain, i.e. a "3" on the scale for us might be a "5" or higher for a person without chronic pain. Not sure where she read that, but I could see it happening.
I'm glad it's done for now and you're feeling better. I hope it gave some helpful information and that you won't be repeating it any time soon.
Not sure if you've talked to your care team about it yet, and at least one person here mentioned salt capsules for times when the blood pressure drops, but you could look into salt/electrolyte capsules. Vitassium is the name brand, developed for these conditions. It gets expensive, but they offer a discount if you contact them with your medical condition. But last year, I switched to a lesser known brand called Klaralyte, and it's literally the same product. I also regularly use electrolyte drinks (Skratch, Tailwind, Kinder Farms). Hope you feel better soon.
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The reason I was retested is I felt the metoprolol succinate was not doing any good. Not having diabetes in my family my glucose and A1C shot up along with kidney and liver enzymes. I was given a choice come off the metoprolol or take insulin shots. I came off of it. The testing on the heart monitor showed it was not helping the arrhythmias for the CAN- cardiac autonomic neuropathy. I have an RN degree I have spent a lot of time reading medical journals until I am sick of it trying to find answers for myself. Most people I speak with does not have neuropathy as advanced as mine.
Small fiber neuropathy and autonomic neuropathy- affects the organs- gastroparesis, bladder, kidneys, heart and so forth.
Severe sensorimotor peripheral polyneuropathy/
Autonomic neuropathy.
Mine is autoimmune. I tested negative for everything. Last resort we are doing a spinal tap for autoimmune disorders and proteins.
Truthfully, it’s frustrating. I could not imagine being young and having it. The tremors also affect my legs. My husband forbids me to cut up anything if I do I cut my fingers because I can’t feel them. I have gotten stitches several times. The best treatment is IVIG therapy and it takes approximately six to seven months to kick in. It also keeps it from progressing. What a lot of people will not tell you is about applying for patient assistance to get the price lower.
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6 ReactionsThank you and I am so very sorry for all you are suffering with.
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3 ReactionsMost cardiology offices had them in past. Now only a few PM&R offices and universities have them.
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1 ReactionLook for a law firm that specializes in ADA cases.
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3 ReactionsI have POTS (diagnosed by tilt table test), and I’ve had it done twice. Are you only doing the tilt, or are you also doing the full series of autonomic nervous system testing? I did the autonomic nervous system testing, which included the tilt test.
It feels unpleasant because the tests are meant to provoke symptoms, but otherwise it’s not really painful per se. I have central sensitization (a chronic pain condition) so I generally felt fatigued and not great afterward because it’s a stress to the body, but I was functional.
My greater concern was that I’m a trauma survivor, so the idea of being in a room strapped to a table and monitors with a stranger was problematic, as you can imagine. I had to ask for help communicating accommodations to the tech doing the test.
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Like -
Helpful -
Hug
3 ReactionsI did have the test. I passed out right away. I have the neurocardiogenic syncope. I had passed out twice and I didn't know what was wrong with me. No alcohol, stay hydrated, check your blood pressure (ensure that isn't too low), potassium and sodium. I was diagnosed a long time ago and at this point I have not passed out again. I used to exercise during the morning and at lunch. I believe that that was part of the issue. They sent my sodium pills that you get at CVS if I felt sick and my blood pressure was low.
-
Like -
Helpful -
Hug
5 ReactionsI did not pass out yet I felt awful. My husband says I always understate my pain. Maybe I do. I was extremely nervous and had a hard time with the test. It’s been a week now but blood pressure was very low first two to three days but now normal again. I have been extremely fatigued. But it’s over. Thank you to everyone’s support and comments.
-
Like -
Helpful -
Hug
2 ReactionsThat's understandable to feel fatigued, because it's such a stressor to the body and mind, regardless of whether or not it even elicits symptoms! I feel like physicians don't really take that into account. My sister told me that people with chronic pain tend to underrate our pain, i.e. a "3" on the scale for us might be a "5" or higher for a person without chronic pain. Not sure where she read that, but I could see it happening.
I'm glad it's done for now and you're feeling better. I hope it gave some helpful information and that you won't be repeating it any time soon.
Not sure if you've talked to your care team about it yet, and at least one person here mentioned salt capsules for times when the blood pressure drops, but you could look into salt/electrolyte capsules. Vitassium is the name brand, developed for these conditions. It gets expensive, but they offer a discount if you contact them with your medical condition. But last year, I switched to a lesser known brand called Klaralyte, and it's literally the same product. I also regularly use electrolyte drinks (Skratch, Tailwind, Kinder Farms). Hope you feel better soon.