Peripheral AND autonomic AND Small Fiber Neuropathy
 

Hi, I haven't posted for quite a while.

I've had so much going on for so long, but now that I'm getting IVIG for my Immune Deficiency and I am no longer sick all the time, I'm beginning to sort out my problems.

I always knew I had PN. But now I realize that I also have autonomic neuropathy (which is also called dysautonomia), and small fiber neuropathy.

Essentially almost all the nerves in my body are affected.

I am also taking Medrol to deal with side effects of the IVIG. And now I've added Neurontin to help with the pain and burning and tingling of the various neuropathies.

So I some ways I'm beginning to feel almost 'normal'. I also had PT for my legs and feet (the peripheral neuropathy) and while I'm not great, I have more confidence and I appreciated getting specific attention to how I walk and what to do to improve.

I am going for testing of the Positional Orthostatic Hypotension Syndrome, and hope for more testing to follow.

I still have a copper deficiency, although taking 10 mg of copper daily has brought my blood levels up to near the bottom of normal. So I keep taking it, a long with the iron.

For me the key has been working with an excellent neurologist.

Hugs, ElaineD

I have dysautonomia from a head injury. how are they testing you for Positional Orthostatic Hypotension Syndrome? are they using the tilt table?

Hi Mark, I'm going for a preliminary work up first. This is with Duke University Medical Center, which does tilt table testing.

I imagine that will be included.

I'm so sorry about your accident. How are they treating your POTS?

Hugs ElaineD

theyre not lol. I got sick the day of the tilt table test and didn't take it. I am fighting so many battles from the head injury including dysautonomia which is affecting sleep, bowel, personal, pain, forget about it lol. what are you taking to combat your autonomic pain? I am taking Neurontin and Cymbalta. I get the weirdest thing I wake up to vivid dreams with my upper body on fire. I wonder if that is from the dysautonomia. I wish you luck and hope you find answers I will follow your post

Until you finish your testing, there are a couple tricks to decrease symptoms of POTS quickly.

Knowing the mechanics of why POTS causes low BP and higher HR helps to figure out best ways to reverse symptoms...especially if out in public or a place where you can't simply lay down.

When a patient with POTS stands, the message to increase BP is not recieved. This causes blood to pool in the feet, thus leaving little in the brain, which cause the lightheadedness and dizziness. The HR increases in a compensatory reaction...the heart knows the BP is low so it beats faster to compensate, trying to get more blood to the brain.

Simply laying down will immediate reverse symptoms...as the blood can easily get back to the brain. Elevating your feet makes it work even faster. If you are in public or a place with laying down isn't possible, then sitting will help. however, many grocery stores don't even have a place to sit. If you feel lightheaded from low BP in this situation, then walking will help. It may not sound like it would, but walking causes muscles in the legs to contract and therefore push blood back up. It won't get it all the way to the brain, but it will help ease the symptoms slightly (enough to keep you from passing out in most cases). Also, just shifting from side to side...anything to use the muscle in the legs will help. Another tip is to keep water with you at all times. If you drink water (quickly) when you feel the symptoms coming on, it will help increase volume in the blood stream to increase BP for a short time. it really doesn't take long for it to get to the blood stream and help. If you walk around and drink water, you can easily alleviate symptoms. Again, these tips are for a short time...until you can get to a place to sit or get your feet up to get blood back into your brain.

Just thought this might be helpful to keep in the back of your mind while you await testing and treatment (if necessary).

Please keep us posted on the testing and results.

Mark, these tips would be helpful for you as well...anyone with dysautonomia.