Anyone with nervous system dysfunction (migraines, POTS), had Sympathetic Block willing to talk?

OK, lets get some more responses. A lot of people here have at least 1 of your problems. But first maybe you can tell us a little more about what you're experiencing. We're not doctors, just patients telling our experiences.

Did you get treated for your Lyme? We have a whole forum for that, so it may be a place to post about that. It was extremely active yesterday, over 2 pages. You can also look up specific items in the archives at the top of the page - in the search box. My son had it, and it came back after a year and he had to go back on meds.

Do you think it was the pseudoephedrine that triggered your autonomic dysfunction? Or did it start with the Lyme?

By the term POTS, do you mean the high norepinephrine type? Have you been checked for a pheochromocytoma?

I have the blood pressure drop on standing, which my cardiologist says is not POTS, just postural orthostatic hypotension. I get a rise in heart rate but usually not above 100 bpm. For my cardiac stress though, I stood up to get on the treadmill and my rate went to 147 for 2-3 minutes before spontaneously settling down.

I also have dysautonomia from breaking my neck. I have constant pain below my neck, the worst being in my legs and feet. My legs and feet are always cold, really cold, not just in my brain, but to touch too. I have to wear long pants on hot days. In winter I wear leg warmers.

I've been tested (EMG), and my nerves are just fine. Except there's a logjam in my cervical spine. Touch feels like pain, and very hot feels just warm.

I don't have visual static, but I have bad tinnitus, but that comes and goes in the level of the sound. I've been told I have Meniere's. I have headaches and dizziness sometimes, which go along with that diagnosis. but it started with the cervical spinal cord damage.

What do you mean by "sympathetic block?" The sympathetic system is huge. Do you have a location in mind? It won't do anything if you don't have a specific spot that is causing nerve compression. Like many others on the forum, I get blocks of various types, also nerve ablations, but they're for specific pain being caused by arthritis or other bony compression on nerves. I don't think just picking a spot, say lumbar, and popping in some steroid, will stop something generalized like POTS, unless there is something showing on MRI or EMG. I've had many injections for sciatica, several in cervical spine for arm and shoulder pain, and they don't relieve my hypotension, tinnitus, or freezing legs at all.

Maybe you have something that can be fixed. I probably am misunderstanding your post. I hope others will chime in and find something that will help you.

Wow OK sure sorry to hear your having these issues. I can relate to some of what you describe since I had viral encephalitis some 30 years ago now that sent my Cns into the same overdrive kinda state. Its literally(no pun intended) nerve racking. Fortunately for me the state and damage was not long-lasting and most of the symptoms receded after a year or so had passed but boy was that a horrific year. The migraines and visual disturbances as well as a profound hearing loss are however still with me almost 3 decades later.

There were days I felt like my entire existence was living on pins,needles and electricity literally. The creepy jumping out of your skin and your insides tingling was almost unbearable. Not one external stimuli was perceived normally as Alcie described hot and cold were not really hot nor cold but how my brain received and interpreted the message,pain may have felt more like someone was incessantly tickling the area and the best way to describe it so others can make a comparison is like when you have a itch and no matter how hard or where you scratch you never seem to scratch the right place. Like a surgical scar early out and you can only scratch around it not on the scar itself,relief a little but the itch is still there.

Like I said it was a nightmare and I think I would have lost my mind had I had to live with those crossed wires for the rest of my life as it was a year of nothing as it should be was horrible and I recall it like it was yesterday.

As for the nerve blocks you could give it a try but picking what nerves to actually block will be trying since you can't block large area's I imagine you are just going to have to pick your poison so to speak and get the most troublesome areas. Important to keep in mind it's not a exact science and they don't always work providing the same relief for the same length of time for everyone. I personally think its worth a shot so I have had some for peripheral neuropathy and sciatica in the past with some good results just not as long as I would have liked.

Good luck and I certainly hope you find some relief

Hello & welcome to the forum. After reading your post it sounds like you are in dire need of some type of relief.

Have you been referred or scheduled to see a pain mgt dr for injections yet? Your primary care dr can make the referral but be prepared it may take some time to get an appt with one. To speed up the process of getting an appt you may want to go online to your insurance company & look to see who is available on your plan. Take the list to your dr so they will know who is on your plan.

My sister has Lymes & like you, she has had it a very long time. What made things worse was trying to get a dx & treatment, none of it was easy & she suffered a long time before finding a dr that knew how to treat it.

We have a very active Lymes forum here at Healing Well & you may want to check it out. There is a chance perhaps some of those folks over there may know something about the blocks in question.

Take care.

Hi ok...

I don't check in here that often these days, but happened to notice your post as I've got pretty major autonomic dysfunction, though POTS is not one of my issues - my HR can swing either way (record low & high something like 20 & 200+) but my bigger issues are with orthostatic intolerance, temp regulation and gut issues. What is it you're hoping to achieve with a sympathetic block? You mentioned pain...so is it for pain relief, or to try to manage your POTS symptoms? I have no experience of them being used for broader autonomic issues, but have had both stellate ganglion and lumbar sympathetic blocks to try for pain relief. If it's for your POTS, are you under a good neuro or cardio (or both?). Has anyone trialled you on things like beta blockers, or a volume expander? What is your fluid and salt intake like? Obviously depends on your baseline blood pressure (not so good if you run high...I run low to begin with) but we have a good autonomic specialist here who recommends dys patients ought to aim for an intake of 10g salt daily to help boost circulating volume (and consequently help maintain blood pressure and hr)

Hopefully with this pending appt with the PM dr he can do something to give you some relief. A 6 week wait for an appt is not uncommon at all, thats about average these days. Good luck with your appt.

OKLETSGO: Did you ever try the Stellate block for your autonomic symptoms?? Did it work for you? Which symptoms were eliminated, if any?? I'm looking for a resolution for my sister's autonomic issues. She is totally disabled and no Dr's seem able to help. The SGB is one that was recommended to us, so I'd like to know how it worked out for you.
Thanks