New Symptoms Is It Pots Related?

[goodnuff77]

I started getting my POTS symptoms back in 2009, since then it seems that new symptoms keep popping up. My Doctor blames everything on the POTS and says there's really nothing we can do. I've been on all the traditional meds for pots only to find my body couldn't take them. Had all the tests, moniters, a handful of operations and procedures. Now I pretty much just take Propranolol and take Saline via my Port a Cath. Then of course many other meds for some of the other problems. So I've been dealing with the problems the best I can. But back in July I started waking up at night with uncontrollable chills, severe spine pain from the base of my skull to just below my shoulder blades and I have a wicked brain fog. The fog, chills and pain are so bad I cant move out of a fetal position. This happens about 4 or 5 times a month and last about a hour. My Doctor says this is probably due to my blood pressure dropping and tells me it's because of the pots and nothing we can do. I'm curious if this happens to anyone else and if so does anything work.

[juliegee]

I agree with your doc that some of your symptoms could be caused by a drop in BP. I've had that happen at night (once in the hospital- freaked out the nurses ) and uncontrollable shivering follows for me. The pain accompanying this is more inexplicable & concerning. Many of us get a "coat hanger-type" pain with our POTS, where our necks and shoulders ache miserably...but this sounds different and it occurs WITH the shivering.

I don't mean to be an alarmist, BUT with your port- you need to take this symptom very seriously & not let your doc brush it off. That shivering (and drop in BP?) COULD be a sign of sepsis. Especially if this happens more frequently; take it very seriously. A simple blood test should reveal any underlying infection. Sepsis can "simmer" for a while & flare when your are weakened, very tired, etc.

Hope all is well & you figure it out.

Julie

[Katybug]

I agree with Julie that while I do get chills and brain fog from my POTS, the spine pain sounds like something different and possibly serious. If it was me, I would pursue a better answer for that particular pain. Hope you feel better soon and get some answers.

[Katybug]

I was thinking after my last post...you say you had various procedures...did you have a spinal tap(lumbar puncture) somewhere along the line? Sometimes having one of these can cause leakage of spinal fluid which can cause pretty severe pain.

[goodnuff77]

No spinal tap or anything to do with my spine just a handful of surgery's on stomach and Cath Ablation. My Doctor did send me to a spine Dr. where I got the normal exam and some xrays and a mri. But the spine Dr. told me he had no clue about POTS and never heard of it. He agreed that it's probably related to the POTS. I've had to travel to 3 different states to meet with Doctors just to get to this point. And so far the only thing I found is that nobody really knows about POTS except people that actually have it.