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MikeO

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Posts posted by MikeO

  1. Emotional feeling of panic/terror

    in Dysautonomia Discussion

    Posted

    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!  

  2. TILT Training

    in Dysautonomia Discussion

    Posted

    17 minutes ago, Pistol said:

    @MikeO - this certainly can help, but I believe it requires complete dedication. I t did help me. 

    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.

  3. EDS without being overly flexible?

    in Dysautonomia Discussion

    Posted

    15 minutes ago, GasconAlex said:

    We usually  associate  hypermobility  with  flexibility,  but  some  hypermobile  people  may  not present  as  particularly  flexible  and  may  complain  of  stiffness  and  tightness.  This  is  often because  muscles  are  not  working  in  an  efficient  way;  they  are,  instead,  having  to  work overtime  to  try  to  stabilize  and  support  the  joints,  causing  them  to  go  into  a  state  of extreme  muscular  tension

    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.

  4. TILT Training

    in Dysautonomia Discussion

    Posted

    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.

     

     

  9. Association between autonomic dysfunction and atherosclerosis

    in Dysautonomia Discussion

    Posted

    8 hours ago, Sushi said:

    There are some recent studies about the association with vascular stiffness

    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)

     

    15 hours ago, Pistol said:

    So if you are asking if inflammation does affect dysautonomia - I totally believe so b/c in my case treating inflammation also improved the dysautonomia symptoms to a degree

    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.   

  10. Association between autonomic dysfunction and atherosclerosis

    in Dysautonomia Discussion

    Posted

    1 hour ago, Pistol said:

    @MikeO - I do not think they are connected, but I can imagine that one could make the other one worse. 

    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.   

  12. POTS, antibodies and immunosupressant drugs

    in Dysautonomia Discussion

    Posted

    5 hours ago, MarcoS108 said:

    No, what I was trying to say is there are different ways someone can have a reaction to a food and that most doctors will test with only one of those ways (IgE). For example, someone may get a skin prick test with gluten or dairy and show up negative with IgE but if tested with IgG would show a positive reaction to that food. One may get blood testing for this, but truly one of the best ways to find out is to just cut out a food and re-introduce it a month later. Many with autoimmune conditions try the AIP diet and find it works wonders for their symptoms. Many with gut issues try the SCD or GAPS diet and find it is extremely beneficial. The IBS diet can be pretty beneficial at first especially if the individual has SIBO, but the only downside is those fermentable foods provide nutrition to our gut biome in the colon. The gut biome has huge impacts on human health ranging from the immune system, mental health, hormones, etc., so while it could be helpful at first it could be harmful in the long run. The important thing is that someone with POTS may find helpful, as well as other dysautonomias, is to find their inflammatory triggers as inflammation causes an increase in IL-6 which can increase the tone of the sympathetic nervous system

    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.

  14. Totally flunked my PVD ultrasound Today

    in Chit-Chat Forum

    Posted

    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.  

  15. POTS, antibodies and immunosupressant drugs

    in Dysautonomia Discussion

    Posted

    2 hours ago, MarcoS108 said:

    The immune system will also react to a food with IgG and IGA

    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.

     

  17. Went down again

    in Dysautonomia Discussion

    Posted

    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.

  18. Strange event

    in Dysautonomia Discussion

    Posted

    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]

  20. Went down again

    in Dysautonomia Discussion

    Posted

    1 hour ago, Pistol said:

    doctor would ever consider low dose Tennex ( guanfacine, not the ER version )

    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 

  25. POTS, antibodies and immunosupressant drugs

    in Dysautonomia Discussion

    Posted

    1 hour ago, Pistol said:

    Over the years all autoimmune markers were always negative except for ESR, which essentially just shows that inflammation is present

    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   

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