MTRJ75

This, at times, is a constant symptom, but I wouldn't call it one of my worst. Of the three types of palpitations (racing or skipping being the others), this is the one that generally concerns me the least. What I found though, is when my more concerning symptoms are less bothersome, I just seem to notice the pounding heartbeat less. It's still there like a drumbeat that bounces me up and down on the bed, but no longer stops me from sleeping on it's own. I don't know what to say other than once your less conscious of your heartbeat overall, it might not bother you as much. 

36 minutes ago, MomtoGiuliana said:

In case you did not see this topic already:

https://www.dinet.org/forums/topic/32393-covid-booster-question/

 

Had somehow missed this. Thank you. Still not seeing what I was hoping for about boosters after bad reactions to second shots though. 

1 hour ago, yogini said:

Yes I had symptoms with first and second shot but none that I could tell with the booster.  It might be better to rely on data than one off stories.  Another thing to keep in mind with the booster is that it’s usually only half a dose.  Best wishes on your decision. 

Where would I get such data? I don't suppose anyone has a database of booster reactions to people who struggled with the second shot. 

Considering getting my booster next week. Second Moderna was back in May and it lit my nervous system on fire for a good month or so. 

My question is if anyone who struggled a little bit with their second shot and has since gotten a booster has done better and not struggled as much with the booster. 

The problem is, I'm not reading a lot of stories where the second shot was a struggle, but the booster was okay. I have read some rough second shots and even rougher boosters. 

I really don't know what to do here. 

I wake up with every muscle on fire often. Incredible exhaustion and aches. Difficult to move or even talk for a couple of hours. 

Pitcher for the Red Sox had myocarditis from COVID last year. Couldn't even get out of bed for months. Not only returned this year, but did well enough to earn a big contract. Same age as you. If this is the case, have confidence that you can rebound. 

I actually do use the stairs in my house as a substitute, though not to the extant I used to. This is one of the things I've tried doing again with poor reuslts. 

I have the same issues @SCOOBY. I obviously can't go back to my pre-POTS workout routine, but it still seems anything I try to do has devastating consequences/after-effects, which is why I hoped maybe the CHOP regimen would help, but it doesn't seem to be something we can do from the comfort of home. 

I understand what Base Pace means, but what am I supposed to be doing at Base Pace? Although, with lack of any equipment that isn't in my house, it probably won't matter much anyway. 

On 1/17/2022 at 12:02 PM, Yhoun said:

Link to CHOP protocol

I downloaded and read this months ago, but still have no idea what I'm supposed to be doing. 

For example; Day 1 Month 1 reads: 

Training Mode 1

5-10 min Warm Up

3 min Base Pace

2 min recovery

3 min Base Pace

5-10 min Cool down

What is Base Pace? There's no link to these exercises. Can I do all of this without access to equipment? 

Day 2 Month 1: 

Strength Training

That's it. How many exercises? For how long? 

This is an incredibly confusing regimen as written. Even the doctors I've brought it to have no idea how this works. 

I've been told I'm already emotionally blunt, so that shouldn't be problem. 

Don't see the neuro again for a couple of weeks. 

The blog/article made it sound like there was very little risk if I remember right. 

Maybe not a miraculous healing, but if you can pick up 15% here and 20% there, it may add up. 

Thanks for this. It makes a lot of sense. Seems to be a lot of these type theories going around now. Hopefully the medical community can begin figuring out ways of acting on them soon. 

Didn't want to quote something without remembering where I read it, so I did a google search and these are the results that came up: 

https://www.google.com/search?q=boosters+only+10+weeks&oq=boo&aqs=chrome.1.69i57j35i39j69i60l3j69i65l3.2254j0j7&sourceid=chrome&ie=UTF-8

There apparently was a study done that suggests Omicron protection lasts only around 10 weeks with booster shots. 

Considering the vast and diverse number of outlets reporting on the study in that google search, it doesn't seem to be a politically motivated stance, as sites that are considered both "left" and "right" are reporting on it, which would seem to make it slightly more credible in my eyes. 

So my question is now this: If the benefits are only going to last 10 weeks and, like the last shot, my nervous system is lit on fire for about half that time where I won't be able to leave the house anyway??

I really don't know what to do here as my 6 months just came up. 

16 hours ago, MikeO said:

I also did read that a bilateral injection is contradicted.  

I wonder if it's similar to the reasoning for ablations, though I'm not sure I even understand WHY ablations aren't endorsed for POTS, just that they aren't. 

On 12/30/2021 at 8:14 AM, Jyoti said:

Thanks for posting the link!  It is weird because I have heard of it--at least eight times in the last six days, and only a couple of the references were to this paper and/or Cort's piece.  My osteopath mentioned it to me last week as he was referring me for nerve blocking for sciatica.  He said: this pain doctor I'm sending you to does some really interesting stuff including a stellate ganglion nerve block on another patient of mine who is dealing with trauma.  Apparently it dramatically lowers the threshold for sympathetic activation.  Very successfully.

I was suddenly excited to talk to the pain doctor.  Forget the sciatic pain!  I can live with that.  Let's talk SNS!

And when I read the original paper: https://www.sciencedirect.com/science/article/pii/S0165572821003118 I cried. Tears for: what if there actually is something that could help me feel better?   I think we all have inner knowing about what might help and what is less likely to make a difference to our individual circumstances; this one feels very promising to/for me.  

Fingers crossed for all of us.

The doctor who did my exosome treatment is a pain doctor. Very progressive. I may call him after asking my neuro about this. 

Though I still keep coming back to the autoimmune component of this and if it would just mess things up again. Seems Cort had an answer for that in his next blog. 

Turns out there's been a drug for that available all along too: 

https://www.healthrising.org/blog/2021/12/30/bc-007-berlin-cures-long-covid-chronic-fatigue-syndrome/

I know several recently vaccinated or boosted people who have been very symptomatic since X-mas. Who knows if it would have been worse w/o vax or it's not as potent for as long as they say. I've read so many conflicting things about booster shots, Omicron and length of effectiveness over the last week, I don't know what to believe. 

A procedure developed in the 1930's seems to have some positive result in helping to "reset" the ANS. 

It basically an anesthetic that "stuns" the nerve cells that set off the fight or flight chaos. And it seems that a just a few treatments might have long lasting effects as it resets the nervous system to act normally again. 

I wonder if this would have some benefit in cases of autoimmune issues as well. One of the newer theories I've heard is that the autoantibodies don't necessarily attack and damage the nerves and pathways so much that they don't, but more in a way that they misbehave and react differently or wrongly. 

How amazing if we actually had an answer for almost 100 years, but simply forgot about it. 

Has anyone ever heard of this? 

https://www.healthrising.org/blog/2021/12/28/stellate-ganglion-long-covid-fibromyalgia/

Like @Pistol I've already put so many restrictions on my diet, that I don't know how much further I can go, though I still suspect histamines remain an issue even on an H1 + H2 + mast cell stabilizer. 

Though I have been feeling slightly better when idle, I still run into the same problems with minor activity that made me stop workouts and exercise in the first place. Still a place I can't seem to get past. Thank you for the info and congratulations. 

I was well below my normal baseline with the 2nd shot for about a month or so. How did you handle the original shots? 

Same here. Worst in the morning after getting out of bed, but now eating or even moving around will trigger a runny nose. 

I believe they're now able to stain for mast cells during GI scopes now. Maybe that's what was meant? 

52 minutes ago, Alex D. said:

I have used a Levine Protocol. This article is a good write up.

https://betterbythebeat.com/the-levine-protocol-for-exercising-with-pots/

 

Thanks for this. I've downloaded the CHOP program, read it, but have no idea what I'm supposed to do. 

The theories I've heard about exercise are that any program you start is going to make you feel worse for about a month before you feel better and also the exercise lecture during last year's DI Conf said that you have to stabilize any mast cell issues before starting an exercise program or it will fail. 

On 11/18/2021 at 4:26 PM, Rexie said:

Elizaangelica, just covering over-sensitivity to light (I’m over-stimulated by many things and this all manifests like chronic regional pain syndrome for which I meet the definition), I’ll mention some eye stuff for you I found interesting. Think circulation. 

Transient visual loss (TVL) is an ophthalmological symptom referring to mild blurring of vision to complete blackness; it can be monocular (one eye, TMVL) or binocular (both eyes). TVL may alternate from eye to eye and it is hard to tell sometimes whether or not one or two eyes are involved. Many conditions, from serious to not-so-serious, can cause TVL. Precipitating factors for transient monocular visual loss (TMVL) include posture, light, eating, exercise, hypotension, arrhythmia, and heat. 

For those of us with dysautonomia involving changes with blood pressure, etc., hypoperfusion (reduced amount of blood flow) of the optic disc or retina, either directly or indirectly, may be common. Visual loss is usually of short duration (2 to 4 minutes), and may be postural, may recur many times a day, and may be associated with photopsia (eye floaters or flashes). There may be associated features like headaches, jaw claudication (pain and tiredness of face and jaws after chewing), scalp tenderness, fever, polymyalgia rheumatic (an inflammatory disorder causing muscle pain and stiffness around the shoulders and hips), etc. Some common causes for hypoperfusion include but are not limited to low blood pressure (hypotension), loss of blood volume, retinal vasospasm, reduced cardiac output, low oxygen levels in the blood, low hemoglobin levels in the blood (oxygen is carried by hemoglobin), dry eye disease, hyperviscosity states, and migraine/retinal migraine. 

TVL can also be light induced. People like me with light-induced TVL suffer from poor to blurry vision or prolonged after image when exposed to bright lights or sunshine. In theory, when the retina is exposed to light, there is an increase in retinal metabolic demand that is unmet by ocular circulation. This can be common in those with choroidal vascular insufficiency from significant carotid stenosis (narrowing of the large arteries on either side of the neck) as in atherosclerosis/high cholesterol. The mechanism behind the more serious hypoperfusion retinopathy results from an overall ischemic cascade and starts with comorbid cardiovascular conditions, such as hypertension, hypercholesterolemia, diabetes, heart disease, and history of smoking. Or for me, less serious ocular ischemic syndrome triggered by low blood pressure causes me visual issues, especially when coupled with light sensitivity. Or maybe it’s vasospasms or all three plus a neuro glitch. 

Retinal vasospasm with decreased arterial perfusion can be precipitated by emotional stress, cold, or exercising. Vasospasm can occur in the cervical portion of the left internal carotid artery, which diminishes blood flow to the ophthalmic artery. Once an episode of delayed central retinal artery circulation ends, all abnormalities resolve.

Ocular ischemic syndrome is the term used when TMVL lasts longer than a few minutes (30 minutes plus). It is often precipitated by orthostasis (postural hypotension/orthostatic hypotension), general hypotension, postprandial hypotension (drop in blood pressure after a meal), abnormal vasomotor control, hyperviscosity, exercise, sexual intercourse (I do remember seeing stars from time-to-time), and exposure to bright light. Phosphenes and impaired dark adaptation are common. (Phosphenes are the luminous floating stars, zigzags, swirls, spirals, and squiggles that occur when the cells of the retina are stimulated). 

By definition, people with transient visual loss (TVL) almost always present at the doctors’ offices after episodes have resolved and neurologic and ophthalmologic examinations are usually normal. Nothing was ever picked up during routine eye exams for me. The pupillometry portion of my autonomic function testing at UTSW-Dallas did reveal “large baseline pupils and impaired constriction responses to standard light stimulus.” Maybe I’ll learn some new things with my first interventional cardiologist, I go back soon for stress testing with exercise myocardial perfusion imaging and also an echocardiogram.  

My vision is off with eyes seeming out-of-sync when my blood pressure is low or I’ve skipped a meal or had a long day or flare of my deal. I wear transition lenses (photochromic lenses) in my glasses when out which is helpful since they change according to light levels, even in stores. At home, I like my LED light bulbs best, followed by halogen lights or the old fashioned bulbs as opposed to fluorescents. After a stimulating outing or day I like low light levels and quieter activities. After calming herbs to help balance the sympathetic/parasympathetic nervous system, when I can read again, I love to read. If I must read or insist on reading when the novel gets good and my vision gets bad, I’ll close one eye to continue. Often I’ll just listen to news or a TV show instead of actually watching it if my eyes hurt or are not focusing right. I find that improved nutrition which gives my body the raw material to make the neurotransmitter it needs helps me a lot. My latest addition is powdered collagen in my morning smoothie. Regular exercise as tolerated is also helpful. When over-stimulated I’ll pause and not move for 20 minutes to an hour while playing simple phone games so I can regroup and let everything come back into homeostasis, eyes included. Sometimes a short 5-20 minute nap helps. I hate the down time, but such is my life which is better than no life. 

Elizaangelica, learning new things is always nice and it’s perfectly normal to want to know how things work, as well as being often useful. I think we should all be proactive in our health care, going as far as we want and can with education. It amazes me that I never knew much about my body and all its systems much less how it works before my own health downturns. It has given me a new appreciation for life. We are indeed “fearfully and wonderfully made”. 

Printed and will be taking to eye doctor with me next month. Makes a lot of sense with my vision and light issues last few years. 

Interesting stuff. My PVCs are most active when allergies are worst (nose/throat all the way down to stomach clogged), like today. I've been told several times why that may be, but my body still reacts anxiously. Not so much to the single ones, but the sequences that last more than a single blip. 

I've never connected vagal tone with it. 

Have also read that ablations are not recommended for POTS patients in most cases. 

I have strange light sensitivity issues too. It took the eye doctor dilating my eyes to realize that this is similar to what I'd been experiencing frequently. I can't exactly explain what the light does to me, but sometimes, during the day I feel like I have a concussion and at night, I can't have any lights on in front of me where I can see them. I get a lot of what the eye doctor calls "after image" when I look at something that's lit up, even a screen. That means I focus on something and then try to focus on something else but still have the image of what I was last looking at in my eyes. If I close my eyes, it appears as a purple blur in the shape of what I was just looking at. No answers except for what you've gotten as well.