Ranga

1 hour ago, Sushi said:

Also, some of us have reverse cortisol curves with low levels in the morning and high in the evening, which can feel like a boost in the evening.

Interesting..  I am on an antidepressant withdrawal forum and for most of us this is true, and it's apparently due to high cortisol in the morning, not low...

5 hours ago, MikeO said:

Might be right. i tend to drink more fluids later in the day or evening.

Same here.. I can't drink water due to gastroparesis like symptoms until the evening.

Even on the worst days, I feel better most evenings after 6pm. Anyone know the reason why? 

Could it be related to diurnal cortisol cycle?

@Sushi @Sea otter I am on a reddit dysautonomia group that also a thread about many people with a similar pattern.. the reason suggested by the doctor in the link above makes sense. It is related to blood flow. I think in our case, it maybe due to a malfunctioning nervous system rather than actual structural issues causing the compression.

I was on the website of a German doctor called Thomas scholbach and for the first time was able to find information that correlated my physical structure to symptoms, as well as get an answer for why I feel so much better when I move my body and breathe in certain ways.. 

I have left varicocele, hemarroids, head forward, away back posture,  abdominal visceral sensitivity and tightness, leg paresthesia, sinus pressure, poor thermoregulation, and most of the time, I am symptomatic on my left side.

Anyone else ?  All my  tests so far haven't indicated any issues, so either it's not the right tests or something else..

Here are the articles that correlated with my symptoms - 

https://scholbach.de/wp-content/uploads/2018/03/20180324-vascular-compression-syndromes-own-website.pdf

https://scholbach.de/gefaesskompressionsphaenomene-darstellung-fuer-patientinnen-und-patienten/checkliste-gefaesskompressionssyndrome#gsc.tab=0

https://scholbach.de/pain-on-the-left-side-of-the-body#gsc.tab=0
https://scholbach.de/behandlung-von-kompressionssyndromen#gsc.tab=0

I have given up on conventional doctors..  as the article says, acupuncture, PT and yoga have been my support for the last 4 years. 

19 hours ago, MikeO said:

Well as i know POTS is that upon standing your heart rate will go up with out a drop in bp. is that what you are seeing?

Yes, first thing in the morning. But I can also have orthostatic intolerance during the day or evening. 

What was nice to read and confirmed my observations is that I have a generalized autonomic dysfunction that isn't severe/consistent enough to fall into a label or drug intervention, but it does affect functioning, and I am doing all the non drug interventions to keep it going. 

What I also know is that my left side is most affected in a flare and as long as I can keep it moving, I can minimize the duration of the flare. 

This is a very good article - 

https://franklincardiovascular.com/do-i-have-pots/#:~:text=Many physicians do what is,increase over 30 beats per

What was really validating was this - 

Patients with POTS have various other autonomic dysfunction symptoms, such as irritable bowel, abnormalities with sweating, temperature regulation and bowel and bladder function abnormalities..

Therefore, it is not an all or none phenomenon in autonomic dysfunction to diagnose or not diagnose POTS based on heart rate responses.

Many of the other symptoms of POTS, which are visceral pain, motility disorders of the GI tract and bladder, chronic pain, headaches, dizziness and fibromyalgia-type symptoms actually reflect abnormal central processing of inflammation relayed by the nucleus and solitary tract (NTS) and the parabrachial nucleus (PBN).

10 hours ago, beccaj10 said:

Do you ever get mood swings highly emotional with the dysautonomia flares? This is new and also blurred vision especially outside with the sun- I just put two and two together and figured it is related to the dysautonomia. 
   The itchiness that you get, is it short lived? I have been having severe itchiness mostly at night for the last two weeks in my legs- cannot figure out why. I never thought it could be the dysautonomia. 

Yes.. I get hypervigilant, more emotional and can get into a fight flight mode very quickly in a flare. Blurry vision is usually indoors when I am walking around after food, but it has improved.  Itchiness can happen when there is a drastic change into warm weather, along with leg parasthesia. I think all of this is related to blood circulation. Not that there are issues with blood vessels , but the communication between the nervous system and vascular system seems to be poor.

I can get that discomfort too, in fact I get it when lying down.   😄. So the moment I want to rest or sleep I am back up to the restroom.

In my case, it does seem to be related to pressure changes (both external and internal) and I suspect that is true for most potsies.

I just have to ride it out when it flares . Avoid drastic barometric pressure changes, and maybe humid and hot places too 

For the last four years I have been dealing with different symptom patterns that cause sleep issues, and sometimes a sleepless night, and I haven't been able to figure out if it's an adrenaline rush or histamine dump, or just poor thermoregulation.

Last night I had a flare after almost 3 months. I usually have no warning of a flare until I get to sleep. But the pattern is always kicked off by some variation of gut symptoms - heartburn, reflux, excess/stuck gas, multiple BMs, or an overactive gut with a lot of gut noises. Sometimes this can be accompanied by sinus issue, thermoregulation issues or leg paresthesia/pain

I have consistently seen a correlation between the gut symptoms and thermoregulation - if I am bloated and burping or reflux, I am in a warming cycle, and if I am having gas and BMs then I am in a cooling cycle. Of course in a flare, this could go on all night.

Last night, it started off feeling light headed and disoriented, which got better after massaging my shoulders/neck (normal BP 110/80). Then I started feeling both sweaty and cold with shivering, with a lot of good gut noises.. which then progressed to multiple peeing episodes, BMs, and needing to drink a lot of water.. and some calf cramps. It may be just dehydration, as sometimes due to my slow gut, I am unable to drink enough until the evening, and it just stays in the stomach, until I lie down to sleep.

The following day, I am more sensitive to both heat and cold and have difficulty with thermoregulation with more leg parasthesia, and have visceral sensitivity.

I went through most of winter without a flare, until the last two days where we have had the temperatures hit 68, and yesterday I sat under direct sunlight for about 30 minutes. I was perfectly fine with that and also being in AC through the day, but when I lay down at night, I had itchy skin all over almost like the body wanted to sweat but couldn't.

I know that I also have poor/delayed thermoregulation - eg. If I am exposed to heat during the day, I may sweat at night or the following morning when it's cold. Also, I need more exercise and humidity in winter or more heat in summer to sweat, but my body takes a while to adapt to the change of season, and it does worse when the daily lows and highs keep fluctuating by more than 10 deg.

Does anyone have a similar pattern? Have you been able to identify a trigger? And has anything helped to reduce the symptoms?

On days when I have a flare, I notice that my resting HR while sleeping dips sharply, and my HRV goes up, which typically signifies a healthy heart.  But in my case, it triggers a flare. Higher HR seems to help me sleep better. See the attached graphs on a good and bad night. Maybe it has something to do with thermoregulation?

In my case, my gut starts acting up like crazy with either burping/reflux or excessive gas with multiple BMs and peeing, sometimes accompanied by chills and heat surges, cold extremities.

My theory based on observing this for the last 4 years, is that a rapid drop in resting HR and a drop in outdoor temperature seems to trigger sympathetic overactivity, and then the body goes into chaos trying to get back to homeostasis.. initially the extremities go cold, then I start burping, which seems to increase HR and then warms up the extremities. When it's warmer weather, it goes the opposite way, with excessive gas, which cools down my core.  

In general, I have flares only when the HR dips, not when it stays high even though both are very much in the normal range - upper 50s to low 70s. Low 70s appears to be my normal resting HR.

Anyone else have this pattern of heating and cooling manifest as burping/flatulence? It mostly occurs when I lie down to sleep or get up from sleep.

See updated post..

When I am in a flare, I have pretty much a consistent symptom pattern - 

My gut starts slowing down, I do have regular BMs, but gas clearance becomes an issue, my pee starts to dribble. It's almost like someone just shut down my pelvic/abdominal area. When that happens, I have more bloat, my upper body starts warming up, I have more burping, I have sinus pressure, and leg paresthesia... when the gut finally settles down and relaxes, my feet feel really warm with paresthesia, gas starts releasing downwards with good urine flow and I feel cold in the rest of my body. This makes it hard to figure out what part to cover up.

And if it's really bad, I go into fight/flight mode, with obsessive thoughts about returning symptoms, until symptoms subside. The flare used to last days, but these days, the worst has been half a day, and breathing is the only thing that helps me deal with it.

A saving grace is that I know the pattern, but I am still clueless what triggers it.. and it always starts from the gut. As long as the gut is moving well, I am good.

1 hour ago, DysautonmiaMatt said:

An upper cervical chiropractor, at least 2 of them I know of, can order a MRI while standing. One doc is in Co and other is in FL. Others in other states maybe able to order it.

I will check with my chiropractor. Thanks.

6 minutes ago, Jyoti said:

Where do you hear the grinding and clicking?  What joints?  Or is it all of them?

Grinding is in my neck mainly. Clicking is pretty much in all joints - neck, shoulder, elbow, wrist, finger, hips, knees, ankles.

Some days like this week, it's worse and I have observed more lightheadedness, disorientation, more diastolic BP fluctuation on the lower side. I am also having upper back pain  around the ribs along the spine pain like a muscle catch/pull.

19 hours ago, Jyoti said:

I had an upright MRI in neutral, flexion and extension in order to look at cranio-cervical (CCI) and atlanto-axial instability (AAI).  Most of the neurosurgeons who address these conditions (which seem to be causative of a sub-set of ME/CFS) do prefer the upright MRI --I think because it is possible to see the spinal structures in the circumstance where there is most pressure put upon them--and thus see brainstem compression. With flexion and extension, they can measure relationships between structures and again look at what might be compressing critical neurological activity.  

While this is not directly related to POTS, there are sometimes very important connections between POTS symptoms and cervical anatomy.  It also would serve to rule out that kind of mechanical basis if the MRI did not find any anomalies.  

My POTS started with whiplash and a concussion, so I had strong reason to suspect that something in my neck was responsible for--at least--the initiation of dysautonomia.  And I have had occasion to have an Atlas Orthogonal adjustment that made me 100% well.  For about four hours.  So...while I haven't found the solution (I wish!) I do know that my atlas is unstable and putting it back in place relieves my POTS in toto.  Can't figure out how to keep it there, but it is worth knowing and the upright MRI might give you some useful info as well. 

If you haven't, check out Jeff Wood's story here: https://www.mechanicalbasis.org/mystory  He had POTS prior to cervical fusion and is an advocate of upright MRIs!

@Jyotithis is good to know. Do they do both an upright and a supine MRI? My issues seem to occur mostly when supine. 

I am seeing an Ortho for my shoulder and I was wondering if I could ask him to have MRIs done. In general, I hear a lot of clicking grinding in my joints, and I wonder if it's poor tendon/ligaments that causes these joints to go out of alignment.

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).

@MikeOwhat is PYR rumor or metformin?

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.. 😊

23 minutes ago, DysautonmiaMatt said:

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

No.

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.

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.

I have had twitching on and off in my face and my calves. Haven't really found the cause, but I have read it could be due vagus nerve issues.

On 11/19/2022 at 5:48 PM, Zaina said:

reversed all symptoms for about 9 months with super clean eating, anti inflammatory food and herbs, and more rest than usual. Then I got sloppy with my diet and healthy habits and it came back. I’ve been having symptoms for a year since it came back.

I have done all of that. However, in my case it appears to be a sudden block or activation of the sympathetic or parasympathetic nervous system that seems to cause the cascade of symptoms. The trigger mostly is weather/temperature/pressure related.