Pots From Lyme Or Neck Injury?

[Electra]

Hello Everyone-

I was diagnosed with late stage Lyme in 2008, and 4 months into treating it I came down with POTS. I have severe nerve pain in my neck that started 6 months after treating Lyme. I've since had some of those nerves ablated in my neck, and the surgery brought on a relapse of POTS. Dispite all the long term antibiotics, I have a POTS relapse 2-3 times a year.

Lyme is definately known to cause POTS, but could a neck injury cause it as well? I've just about had it with doctors, and I'm trying to unravel some of the things that may be causing my POTS. Since my surgery helped my pain, my most debilitating problem is POTS and the neuro symptoms it brings . . . hoping you all can understand!

My disautonomia doc says that extreme pain can bring on a vasovagal response.

[HopeSprings]

Sorry you're going through all this. We know how confusing it can be to try and figure out the root of the problem. Neck issues have come up before with different people (me included) questioning whether this can cause the dysautonomia symptoms. What was causing the neck pain? When you say neck injury, are you referring to the nerve surgery or something else?

[Electra]

To my knowledge I've never had a big event like a car accident, hit in the head, etc. I played soccer when I was a teenager and did headers, but I never remember anything hurting.

4 months after treating lyme & co-infections with antibiotics I've had severe neck pain ( nerve pain and muscle pain) that won't go away with antibiotic treatment. So I call this an injury because they think it is nerve damage, or post infection neuralgia. Also my neck muscles will not release, and I can't really touch them. It refers into my face and tongue too.

I had RF done to c2-c5, this was a surgery, it helped the pain tremendously but flared my POTS. It seem that when something disturbs my neck my ANS goes haywire.

Do you also think that your neck problems could cause ANS dysfunction?

[HopeSprings]

What is RF? I think it might be related for me because I developed a bunch of ANS symptoms right after a neck trauma and like you said, whenever the neck flares, the POTS symptoms seem to worsen. I don't know if it's the cause or an aggravating factor. I just know others have questioned whether their neck problems could be related to the POTS. I've asked several Doctors and they say no, but I don't think they really know.

[Relax86]

Occasionally will crack my own neck and my dysaut symptoms will reduce. HR, blurry vision and headache. It's on occasion that this trick works. It's not my only go-to move but it was worth posting.

[Electra]

Thank you for the responses - it's good to know that other people think that a neck problem could exacterbate POTS. I go back and forth thinking it is Lyme and thinking it is my neck.

RF is short for radio frequency ablation, they ablated some sensory nerves in my neck and it helped! But the surgery relapsed my POTS.

I had my c1 and c2 adjusted by a "NUCCA" chiropractor and it made everything worse. But thanks for the advice on cracking your neck. For me it seems like leaving my neck alone is the only thing to do and deal with the pain.

[joyagh]

I was just going to post about my car accident and nerve damage and what looks like probable cardiac as well as generalized peripheral autonomic neuropathy causing my POTS sy.

I was rear-ended 3 times; once by a car going 60 mph. After he hit me, I hit the guardrail and landed and slammed on the brakes so I wouldn't hit the car in front of me. So i had 3 impacts. I had several spinal injuries from that (1996) and have been fighting recurring pinched nerves in my neck and vertebrae going out of joint. I have stage 2 degen in my neck.

I found a new neurologist who specializes in dysautonomia and he is going to run more tests for peripheral neuropathy.

the scary part is, CAN (cardiac autonomic neuropathy has higher rates of morbidity and mortality in people with diabetes, which I don't have. Sudden cardiac death is a risk. I'm on beta blockers so I guess I'm ok.

[Angela]

Lyme disease and neck pain/stiffness are associated. I feel better cracking my neck, which never occurred prior to first episode major onset of pots. I actually hated the thought of cracking bones but it only helps me now as far as my neck. my 2 lymes tests showed negative but not sure how thorough the testing was, just a blood draw.

[Electra]

joyagh- I'm so sorry to hear of your injuries and all you have suffered. Were you healthy before the accident? Do you believe that the accident caused all of your conditions? I was unsure from you post.