Dysautonomia And Decreased Pain Threshold

[kellygirl]

Today was my second dental visit since being diagnosed with dysautonomia/POTS... on both occasions I have required massive amounts of numbing (can't use Novocaine due to epi content, so dentist used and ester based numbing agent) to cover my pain. Today he had to stop the work and has referred me out to a specialist because even with oral administration of oxycodone/tylenol prescribed by EP in conjunction with numbing agents we could not achieve adequate pain control. I have had several root canals in the past and never encountered this type of pain and sensitivity or required as much medication to get through a procedure.

My questions are has anyone else noticed increased sensitivity to pain since being diagnosed?.

If you have had to have any kind of surgery, have you required higher amounts of anesthesia?

If you have had surgery (oral or any other kind) have you needed more pain medication post operatively to achieve pain control?

I am worried because I may need oral surgery now.

also if you have had surgery has your POTS or dysautonomia symptoms been worse post op?

Any feed back, experiences or know literature on anesthesia and surgical implications would be appreciated.

Thank you.

[Guest ANCY]

Hi, sorry to hear you are having such a rough time. Pain can be a hard thing to manage and because everybody is different what works for one person may not work for another.

I have noticed that I have a harder time dealing with pain, post operative and otherwise, since the onset of dysautonomia. I had several surgeries before the onset of Dysautonomia because I was born with a bilateral cleft lip and palette. I know what a nightmare oral surgery can be and it's important to have a Dr who you trust and is willing to work with you.

In terms of pain I always had a high pain tolerance, up until 4 years ago. when I was little I went through a bone graft with very little pain and only used Tylenol, a big surprise to the surgeon. Since dysautonomia it is a totally different story.

It is important to talk to your doctor/anesthesiologist prior to anykind of procedure and let them know your concerns. Most physicians will do thier best to come up with alternative pain managment before surgery. I had an anesthesia dr that used a local anesthetic drip to numb my abdomen after major surgery in order to avoid other drugs. Finding things to distract from the pain can be helpful too, when possible. Focusing on good breathing is beneficial because lack of oxygen can make pain worse.

In terms of symptomology I find that I do better on a full tank of fluids prior to any sedation. The majority of my issues happen after awakening from sedation, however, when they put me under without prior fluids my heart rate and BP plummeted during the procedure. It definitely takes me longer to recover from sedation than prior dysautonomia and require closer monitoring.

Sensitivity to conscious sedation has changed as well, generally takes 2 or 3 times the drugs for me, even when they did back to back procedures.

I found the following article informative when facing sedation after diagnosis.

Dysautonomia: Perioperative Implications http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3296831/

Hope things go well and you are able to find something that works for you! God bless and you will be in my prayers.

[kellygirl]

ANCY,

Thank you so much for sharing your experiences and also for the very informative article. This is one I will pass on to anyone who will be sedating me and to my primary care. I am terrified of being sedated and being able to feel the pain without being able to respond. Maybe I will just let the tooth hurt and pray to God that I never need a surgery for anything.

[Katybug]

I have always been "immune" to pain meds and I take a lot of anesthesia and I wake up quickly after anesthesia. This is a common phenomenon in EDS patients.

The regular dentist can't handle me....I have to see one that uses anesthesia. Laughing gas, even at high doses for prolonged exposure, does absolutely nothing to me. Novacaine (or any of the "-caines" they've tried on me) do not numb me at all, again, even at excess doses.

There is pharmacogenetic testing that is available to see if you have gene mutations that affect the way you process medicines. I have a mutation that changes how a particular enzymes metabolizer certain medications. I am considered a rapid metabolizer of medicines that are metabolized by the particular enzyme, which means the med is cleared from my system before it can be effective.

[fitnesskelly]

I used to have an extremely high tolerance to pain...like continued to play softball on a broken ankle, didn't use any pain killers or other treatments for a torn tendon and had a neck injury from a car crash, but since my health problems came on, I'm in almost constant pain.