sympathovagal imbalance causing my autonomic dysfunction?

[Ranga]

https://www.caringmedical.com/prolotherapy-news/vagus-nerve-compression-cervical-spine/

 

I can't believe how many of these symptoms listed in this article I have -

1. Increased diastolic BP

2. Low HRV

3. High cholesterol

4. Hemifacial spasms/twitching

5. Ear fullness/tinnitus

6. circadian rhythm sleep disorder

7.chronic pain

8. fatigue

9. dizziness, lightheadedness

10. weight loss, 

11. poor focusing,

12. exercise intolerance, 

13. emotional lability

14. heartburn, bloating

15. brain fog, 

16. vision changes

17. flushing

18. Impaired thermoregulation

 

I also have had chronic sacroiliac joint issues and I am now wondering if the pelvic floor and cervical issues are both contributing to my condition.

Does anyone else have a similar condition? I have had chiropractic work before, but it provided temporary relief.

 I read that a stellate ganglion block may also help for long term relief..

Wondering if others have tried this?

[Jyoti]

Hi @Ranga.  Good questions.  I wish I knew all the answers!  But I would say that I have most--not all--of the symptoms you describe, have been diagnosed with Atlanto-axial instability, not with CCI (though I get substantial relief of symptoms like blurred vision, brain fog, pain, from cervical traction, so who knows?) and with a long term low back/leg issue that has recently been identified as stemming from the SI joint.  

I believe that the cervical issues I have, along with the pelvic floor problems, are very much connected to the SI issue. I  had a steroid injection two weeks ago in the SI joint.  Pain is down quite a lot, AND my energy is increased by about 35%-45%.  Brain fog has mostly gone.  POTS symptoms are not bothering me much at all.  Normally I will have up to 12 pre-syncope episodes in a day.  Now... I sometimes have one, sometimes none.  

I am wondering how long this is going to last, and enjoying it while it does.  But I do have a sense that all of these are very much connected--one to another and also to the larger symptom picture I have. 

In addition, I have looked a lot at SGB.  Heard from a lot of people who have been experimenting with it.  My own conclusion--and obviously no one knows what is going to work for someone else--is that it is not worth it for me.  People with long-term ME/CFS do not seem to be getting much benefit from it.  Some Long Covid folks are seeing results, which is great, but I have a decade of dysfunction and am not all that optimistic for myself.  There is a Facebook group on SGB for ME/CFS where a lot of people who have been experimenting have posted their experiences.  You might want to check it out if you haven't already to flesh out what we are learning about it.

[Ranga]

8 hours ago, Jyoti said:

with a long term low back/leg issue that has recently been identified as stemming from the SI joint

Very interesting. I have chronic SI joint issues, predominantly on my left side, and my chronic neck pain is also on the left side where the ganglion of the vagus nerve originates.  The SI joint issues flare up if I sit for long, so as long as I keep moving, and do my yoga, it is under control. But I do think there maybe an issue with my hips or leg length, that cause the SI joint, IT band, psoas, thigh and hamstring to tighten up, which then can cause circulation/breathing/GI issues.

Acupuncture helped me get over the worst SI flares when the cortisone shots didn't help beyond temporary relief. This was over 20 years ago.

Today I rarely have SI joint or cervical tightness, but I have all the other symptoms for the past 4 years, whereas earlier I only had those two issues along with IBS (burping, frequent BMs). 

Something changed since I stopped smoking, and had auricular acupuncture for smoking cessation. It then was made worse by mirtazapine, an antidepressant that was prescribed for the nocturnal sleep issues, once I stopped the drug.

 

 

[MikeO]

@RangaI read that same article from caring medical couple of summers ago when i was diagnosed with cervical spondylosis after a fall. Did make me wonder for a bit especially when my C6 was pitching a nerve. Down side i will never let a surgeon work on my spine short of being paralyzed.

 Like you i did suspect myself as to having some Vagus nerve issues. My really bad Dysautonomia symptoms surfaced about a month after a carotid endarterectomy on my right side.

Funny you bring up the left hip pain as i am currently battling that one as well. I did try some PT time when it first flared up but did not help, Lidocaine patches did not work either. I did have a good set of xrays done and they show no arthritis and the SI joint looks good. So yesterday i went to a PT Dr at a different facility and he did his eval. What he came up with is a noticeable weakness in my left hip and leg. As he explained it the weakness will change how your hip works as you walk and over time will cause pain on the bursa sac in the hip.

We did try some dry needling did not really work. Upside he did find the overcompensated muscles (was smarts). For now PT will work on getting those leg muscles working together again.

As to a SGB i would try and reach out to @mehallerpretty sure he had this done recently. Have you tried Pyridostigmine? i only ask is because it is thought to stimulate the vagus nerve.   

[Ranga]

2 hours ago, MikeO said:

@RangaI read that same article from caring medical couple of summers ago when i was diagnosed with cervical spondylosis after a fall. Did make me wonder for a bit especially when my C6 was pitching a nerve. Down side i will never let a surgeon work on my spine short of being paralyzed.

 Like you i did suspect myself as to having some Vagus nerve issues. My really bad Dysautonomia symptoms surfaced about a month after a carotid endarterectomy on my right side.

Funny you bring up the left hip pain as i am currently battling that one as well. I did try some PT time when it first flared up but did not help, Lidocaine patches did not work either. I did have a good set of xrays done and they show no arthritis and the SI joint looks good. So yesterday i went to a PT Dr at a different facility and he did his eval. What he came up with is a noticeable weakness in my left hip and leg. As he explained it the weakness will change how your hip works as you walk and over time will cause pain on the bursa sac in the hip.

We did try some dry needling did not really work. Upside he did find the overcompensated muscles (was smarts). For now PT will work on getting those leg muscles working together again.

As to a SGB i would try and reach out to @mehallerpretty sure he had this done recently. Have you tried Pyridostigmine? i only ask is because it is thought to stimulate the vagus nerve.   

Interesting.. i keep wondering how many of us have a similar pattern, but the cause and solution is elusive.  Maybe our bodies are more prone to getting out of alignment, not due to lack of muscle strength, but issues with connective tissue (tendons, ligaments).  Maybe we have a milder form of ehlers-danlos, and that causes these random symptoms when things go out of place.

I can definitely see that connection between my pelvis, neck/shoulders and ankles/wrists.

My SI joint was so bad in the 2000s that I couldn't even roll over in bed. Acupuncture was a life saver after Orthos threw their hands up.  Since then, I have tried to keep all joints moving and limit my sitting time.

 

[Ranga]

5 minutes ago, DysautonmiaMatt said:

@Ranga Dr Hauser is excellent I have been told by my chiro who knows him personally. Both are in south FL. To get any upper spine chiro work you can goto any upper cervical spine chiro. Cost will likely be $300 to $600 for exam and 1st adjustment. After that its much cheaper. You will get an exam and also several X-rays which will be used to diagnose and determine the precise correction you will need. it does NOT hurt. With EPIC you feel nothing since it uses sound waves.  The last adjustment I had was done using the EPIC machine. I have never held an adjustment for so long - over 6 months and still holding! This has made a huge difference in my symptoms.  Best part is it does not involve drugs and you feel the difference pretty much right away.

Thanks for the heads up. I am not so convinced about prolotherapy. 

I have a very good craniosacral chiro and he does tune ups once in 4-6 months. Since I started yoga, I haven't needed to go to him as often. 

I am trying get some updated diagnostics on my neck and pelvis and then evaluate options.

[Ranga]

23 minutes ago, DysautonmiaMatt said:

Has he/she done X-Rays of your atlas to determine if it is out of alignment?

No.

[MikeO]

All a good conversation here. But my experience is to decline any Chiro adjustments (has been bad in the past) and go with strengthening muscles (worked with my neck) albeit i do have cervical issues working with PT has made a diff. My neck so far has been stable. @Rangayou maybe right as to tendons/ligaments being loose but i could never get on board with having some mild form of EDS as my tendons/ligaments are tight on my left side. (just never say never).

I did read your list of symptoms i can relate to them. A autonomic imbalance i can see causing problems that is why i suggested (PYR) rumor is metformin can help as well with this.

 

[Ranga]

1 minute ago, MikeO said:

All a good conversation here. But my experience is to decline any Chiro adjustments (has been bad in the past) and go with strengthening muscles (worked with my neck) albeit i do have cervical issues working with PT has made a diff. My neck so far has been stable. @Rangayou maybe right as to tendons/ligaments being loose but i could never get on board with having some mild form of EDS as my tendons/ligaments are tight on my left side. (just never say never).

I did read your list of symptoms i can relate to them. A autonomic imbalance i can see causing problems that is why i suggested (PYR) rumor is metformin can help as well with this.

 

I agree.. my left is also tight.. 😊

[Ranga]

@MikeOwhat is PYR rumor or metformin?

[MikeO]

25 minutes ago, Ranga said:

@MikeOwhat is PYR rumor or metformin?

PYR is is Pyridostigmine (Mestition) Metformin is a diabetic drug. Studies do suggest that metformin helps with autonomic imbalances. I do have to say the PYR so far is working for me (does not for all) but that maybe because i have issues that some other folks don't (so i can see why it may not work). 

Mestition is a short lived drug (short half life) so it is worth a try. If it does not pan out any side effects will clear up quickly.

Hope this answers your question.  

[Ranga]

2 hours ago, MikeO said:

PYR is is Pyridostigmine (Mestition) Metformin is a diabetic drug. Studies do suggest that metformin helps with autonomic imbalances. I do have to say the PYR so far is working for me (does not for all) but that maybe because i have issues that some other folks don't (so i can see why it may not work). 

Mestition is a short lived drug (short half life) so it is worth a try. If it does not pan out any side effects will clear up quickly.

Hope this answers your question.  

Thanks.  I did check for acetylcholine antibodies as it appears that mestinon  increases the level of acetylcholine (a critical component of autonomic nervous system communication). My value for modulating antibodies  (recmod) was 18 (reference range is <32 % Inhibition).

[MikeO]

43 minutes ago, Ranga said:

Thanks.  I did check for acetylcholine antibodies as it appears that mestinon  increases the level of acetylcholine (a critical component of autonomic nervous system communication). My value for modulating antibodies  (recmod) was 18 (reference range is <32 % Inhibition).

Thanks for the reply. Not sure what this all means but sounds like a test for me is warranted. sure i will go thru the pass the buck to get it done.