Has anyone suffered sensory GBS and orthostatic hypotension as a result?

I had GBS back in 2007. I had both motor and sensory symptoms, but I get the idea that mine had a lot more sensory involvement than most people with GBS. My touch, sight, smell, taste, and hearing were all affected in addition to my ability to move/breathe.

Anyway, I did have residual orthostatic involvement after getting over the acute phase of GBS. In fact, it took close to a year before it was properly addressed and treated. Mine worsened in the year after GBS, though, to the point where by the following December (my GBS hit in late March), I was passing out as well if I stayed upright for too long. The only way I was okay was to stay lying down ALL the time.

I got referred to a cardiologist to make sure that there was nothing wrong with my heart, which there wasn’t. So I was dx with a form of dysautonomia called POTS, which basically means that my autonomic nervous system was incapable of regulating my heart rate and blood pressure the right way. This is what was causing me to pass out.

For me, the treatment that worked was going on a beta-blocker medication, and that stopped the passing out right there, and it helped me stay upright again so that I could have my life back!

I’m still on the beta-blocker (Toprol XL once a day), and I intend NEVER to go off of it, if my doctors will let me. The side effects are negligible, and it really helps keep me functional.

These orthostatic issues probably mean that your sister needs to see an electrophysiologist and/or cardiologist to have a tilt table test; that’s the only way that dysautonomia can be diagnosed. The treatments are trial and error, but when you hit on the right one, it can really make a huge difference.

My neuologist told me that autonomic involvement in GBS is more common than most people know; unfortunately, dysautonomia often gets dismissed as part of “GBS residuals” or attributed so something else, which is sad because it is a treatable condition.

Type dysautonomia into a search engine, and you’ll get a wealth of information.

Good luck to your sister!

Hi Alice ,

I was not formally diagnosed with gbs however my gp believes it was either
lyme or gbs. We seem to be leaning toward gbs since onset was sudden and followed a chest infection. I didn’t have any problem walking although I had no sensation in my arms and legs. I also had orthostatic hypotension. Episodes of fainting or near fainting, a couple of trips to the er also thyroid levels were slightly high which put the anxiety over the top. I am progressing fairly well now however , back to work, with the only symptoms being some cramping in feet and hands, slight tremor and of course pretty darn tired at the end of the day.
As far as regulating blood pressure I would lay down with my feet raised if I was passing out and conversely use many pillows under my head and upper body to quiet the pounding pulse in my head when my bp would rise.
Since your post was some months ago I hope all is well now.
Joel

hey, ur post was a long time agao and i hope things have goten alot better for u since then, i got GBS in 2006…. i had complete sensory loss, 3 years later i still have no sensation, i dont feel hot cold sharp or dull in my entire body, the only lace i can feel is my face..

i also have a very hard time regulating my blood pressure and pass out or get dizzy when i go for lying to sittting or sitting to standing, i take two different types of medication to help control this problem but it is still a daily issue….

if u would like to talk more or personal plz message me and i will get bak to you ! id love to know how things are going.

cynthia

You have to be really carful with sensory deficits, because, for me, it is really easy to get scalded in the shower. I can’t really tell how hot the water is until I put it on my face. That just burns me up. 🙂 Just be carful, ok. It has been alot longer with GBS for me, and it seems to get worse for me as more times lapses.

God bless,
Drummer

I had to reply to this thread. I had GBS in 2001. I recovered pretty well…still paralyzed toes and footdrop but was working and doing well…then I got another virus in Sept 2008 and got POTS (postural orthostatic tachycardia syndrome). POTS is similiar to orthostatic hrpotension..both dysfunction of the autonomic nervous system. I have been pretty sick with POTS and my life has been turned upside down again so frustrating!!

I have posted on this forum looking for someone who might have insight as to a possible link betweent he two dysfuncitons..GBS and POTS. Both are neurological autoimmune responses…I am going to Vanderbilt in April looking for some answers…if I get any I will post!!:)
Erika