MikeO

Hi @EchoNo your feelings are not weird. I get feeling of some impending doom from time to time. While i do not have POTS i do have some component that falls under dysautonomia.. For me when this happens is i get very restless. I can't eat, sleep or otherwise find a way out of it. Yes it is a horrible experience. I never attributed this to dysautonomia but certainly sounds like a symptom that comes along with it. I have had so many things go bad with my health i always figured it was triggered by one of my other issues. Before i even knew i needed heart bypass surgery this would happen all the time. I hope you can get in to see your GP soon. Best Wishes!

Oh @Pistoland as @dancer65mentioned it does help. Just did not realize i was doing this subconsciencly. 2014 was bad for me and had numerous issues with hitting the floor. too this day i still do this. This has helped not sure what i have adjusted to but i can handle a drop in BP much better. As @dancer mentioned i do as well need to keep moving.

I have been wondering about the extreme muscular tension. i have not been diagnosed with anything remotely hypermobile. I have had issues with my knees getting out of alignment (is painful) but i have worked out the trigger have they have been doing better since. I do get the extreme muscular tension in my neck and the PT I have been working with did talk about the muscles not working together the way they should be but could not comment as to the root cause.

I was going through some of the non-pharmacologic measures that can be done to help out with orthostatic hypotension and stumbled on a technique of using tilt training to build up orthostatic tolerances. Started thinking It's kinda of a coincidence that a number of years back i started (subconsciencly) leaning up against things like door jams, walls, car etc.... Not sure what dysautonomia condition this is intended to help but, seems like i have done a better job at tolerating being upright than i did years ago.

Miss Daisy's Beef & Cabbage Casserole bit of a acquired taste but is good. http://www.achefslifeseries.com/recipes/48

Thanks. I am stuck as what to do. Sure the rehab nurses will help sort thru this. End of the day i get the feeling a intervention will have to happen.

I went with the Pfizer vaccine. outside of a bit soreness at the injection site i had no issues. @p8d good for you on getting the third shot. I have to wait.

Had a craving for potato soup. Oh so good.... https://sugarspunrun.com/creamy-potato-soup-recipe/?fbclid=IwAR1Sj67jDXaslHCqL2qXQNsG9MYzDKJXIeKsj_kAL-yTtAgmNzk6w7eVDmg

Hi Sushi Thanks for the suggestion i did find a few studies suggesting a link between (if i read into these correctly) vascular stiffness and AF (autonomic failure) Hi I did find a recent study done by the University of Toledo ( https://www.mdpi.com/2077-0383/10/4/623/pdf ) In conclusion, our study demonstrated that, in a small group of POTS patients, there were elevations of cytokines and chemokines characteristic of an innate immune condition, similar to autoimmune diseases including RA, SLE, psoriasis, systemic sclerosis, multiple sclerosis, and type-1 diabetes [48,75,76]. We believe that the identification of increased levels of pro-inflammatory cytokines IL-1β, IL-21, TNFα, INFα, and TNF receptor (CD30) in POTS patients with autoantibodies against adrenergic and cholinergic muscarinic receptors is highly suggestive of a coexisting inflammatory process that contributes to the disorder and requires further study.

Guess i am targeting inflammation. It is the worst thing for your vascular system IMO. By no means do i know how a body works but i can't image if your SNS is in constant overdrive your system relaxes enough to bring down bad effects. I know i am (Neuro) has been proven but i also have had POTS like symptoms (super secret POTS) for years while on Lisinopril. Now i am starting to second guess my question. but i am assuming intolerances to whatever that gets one SNS going does not have a healthy outcome.

Just wondering if Dysautonomia plays a major role in vascular disease.

I agree food can cause issues. Just had this conversation with my vascular DR today. We talked about what makes me happy and food was not on the list he had nothing to add. Downside is that inflammation is bad. Weather caused by food or other causes like smoking, alcohol, viruses or reactions to drugs or food. Etc... I am sure that the inflammation has wreaked havoc on my body.

I have heard good things from this group. Yes i have been told (Dr Barboi) has a long wait

Not sure where to post this, Just need to vent. I have a 85% blockage in my left thigh. Upside is it is not limb threatening but it is causing a quality of life issue. Options are a stent (have had bad issues with these) or a angioplastie which might not take. For now we will try some supervised exercise. I hope this helps.

I had to Google this one (had no idea what was being discussed). So what is being said is to eat foods that have shown lower IgG or IGA concentrations when testing against a sample of your blood? I am sure i do not have POTS (just Neuro) but eating is still tough. Some will focus on IBS diet just because of the symptoms (like me) I never considered a delayed food reaction causing inflammation (have had similar symptoms with this as well) and being a suspected driver behind a number of issues ( Irritable bowel syndrome (IBS), migraines, rashes, asthma, and chronic fatigue) IgA and IgG reactions are known as delayed response reactions, that include food sensitivities, where IgE responses are immediate and are considered a true food allergy. IgA and IgG reactions may not happen immediately, but can take hours to days to show up in your skin or intestines, and cause symptoms related to inflammation like headaches, fatigue, brain fog, or joint pain. People with food intolerance may experience digestive upset like nausea, constipation, or diarrhea, or skin itching and rashes including conditions like eczema and psoriasis. IgA Reactions IgA immunoglobulins are present in our mucus membranes and helps us fight bacteria and viruses. IgA increases in response to foods when the foods we eat cause inflammation, and in response to stress, disease, or alcohol. IgG Reactions An IgG reaction to food proteins suggests tolerance related to immune cell reaction. Repeated exposure, inflammation, and immune reactivity contribute to sensitivity and high IgG in response to food proteins.

Just reaching out to see if anyone has any experiences with the NorthShore University HealthSystem (Chicago Area) Autonomic Laboratory. Rumour is that they have a world-class neurology team.

Hi @p8d guess i will just have to ask my Dr's. I know BP will come up tomorrow when i squeeze a 180/105. I am not sure if i can even take guanfacine while i am on pyridostigmine. I did read that clonidine can be unfriendly with the rebound hypertension as well as other side effects. I don't need that right now. Just not sure what to do to be honest as i have neurogenic orthostatic hypotension, supine hypertension, hypertension and (super secret POT's) if i take the wrong combo of meds.

I looked up G Fuel. Appartlety there were some concerns about the drink in the past. One of the ingredients in G Fuel is the compound taurine, and Gamma Labs has been criticized for not disclosing the quantity of taurine in G Fuel. Chief executive officer Clifford Morgan stated that "There is nothing wrong with taurine, especially in small amounts".[36] In April 2018, Gamma Enterprises settled a $118,500 lawsuit with California's Environmental Research Center over lead contamination in their G Fuel products. 18 samples of G Fuel were found to have great enough lead content that warning labels were required, per California's Proposition 65.[37]

My Mom always said this when she was not happy with something. She was from Germany. Not sure if i even spelled the the phrase right. I think she might of been cursing.

I will inquire about this makes sense. I will be seeing my vascular Dr tomorrow and will be following up with the Cardiologist on Monday hopefully one of these Guys have had some experience with guanfacine

Not sure what to think. My BP dropped from 153/110 to 98/60 the 98 is getting off the garage floor and walkin into the house just to see my vitals were. Its ok some way i will work this out.

^^^^ So is this a German saying? if so what doe it mean.

Pretty sure i do not have EDS ( I can't flex a single ligament ) but wonder if a cervical instability comes into play. I have been doing PT time has helped but the therapist is concerned.

Oh @AuroraThese 3 are great. They don't even seem to care that i hang out with them on the deck. Mum will just walk up to me.

I have often wondered if a bodys inflammatory state has an effect on long term health. I know while i take the Mestinon my joints are less stiff, fatigue greatly improves. Supposedly some study's have shown that Mestinon helps with inflamation. Increase in cholinergic modulation with pyridostigmine induces anti-inflammatory cell recruitment