MTRJ75
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Posts posted by MTRJ75
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As I understand it, the Singulair and Quercetin are mast cell stabilizers. I'm taking both, along with desloratadine (H1) and cimetadine (H2). None of it really seems to make much of a difference.
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Before I even knew I was sick, I used to do a lot of stair exercises, walking/running, and one time I was talking about the shakiness I get in my legs whenever I do this. I always used to think it was a normal thing everyone experienced after exercise. And then it became worse and worse over time until I couldn't anymore. But I attribute some of it to blood flow issues too. Maybe energy production failure?
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So there I was, feeling like I was making progress, doing some of my own food shopping, more housework, occasionally visiting friends by myself for the first time in years...and then the heat hit.
As soon as we had a few days above 85 degrees, I'm nearly constantly drenched in sweat, but that's not all. The heat seems to have brought back all the deep muscle aches and exhaustion. And it's a double whammy because if I try to use these exhausted, aching, twitchy muscles, the sweating gets even worse.
Has anyone found a solution to this? It's gotta be some kind of mitochondrial/energy production issue, right? And then maybe SFN that's causing the drenching, really uncomfortable sweats. I can sometimes be drenched in sweat with cold skin and goosebumps at the same time! I'm almost at a point where I'm pretty much on my own now, so I gotta figure this out.
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There was a doctor who gave a talk at the DI conference a couple of years ago, who had been successfully treating autoimmune cases with an implantable device and talked about the potential benefits in autonomic problems. There may be a couple of threads about this around here somewhere.
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On 6/24/2022 at 5:19 PM, Nin said:
I was awoken with my chin going into a spasm, then my left side of my face gone numb, then my left arm numb, then my left leg. I laid there whst felt like 3 mins and ran into my parents to wake them. That night I was getting twitches all over my body. The twitches have been intense the past 2 weeks they feel like they're going 24/7. Since then Ive woken a couple of times not with numbness but twitches, pins and needles and I'm just stuck like I can't get up. Anyone else get these things happening? Its seems this happens as I'm about to go into sleep like the 1st ten minutes
I've often gotten fully body cramps/pins & needles/body jerking/electrical-like shocks when trying to fall asleep. It used to happen much more often than it does now. Is there anything you did or ate that day that may have over-stimulated your system?
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Part of my problem is that I don't know if I've overdone it until I'm done. I'm not sure if I'm explaining it right, but my body has problems shifting gears from active to inactive. I end up with blurred vision, shakiness and sweats after I start.
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I heard in one of the DI conference videos one year, a physical therapist said that you're going to fail if you haven't fully addressed any mast cell issues before embarking on something like this or any exercise program. Also, what are you doing? Do you have to go somewhere or have you found a way to do it at home? I couldn't find a way to do it without having to leave the house.
I've tried to start with some pushups, light weight lifting and core exercises and it's been really tough.
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I think this is different than his mold protocol.
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https://www.jacc.org/doi/full/10.1016/j.jacc.2022.04.019
I'll admit to only having skimmed through this study, but it seems like there are some new approaches in treating IST, including a possible hybrid ablation. Also more evidence that Ivabradine works better than traditional beta blockers.
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No, insurance absolutely will not and I feel it's very rare we get good, clean studies with anything having to do with our conditions, as almost all POTS medications are off label. The GENIE test itself still interests me, as the linked page to it suggests it costs around $700. Still expensive, but I wonder what directions it might lead someone in. Maybe that's the most positive thing to come out of all this, as I've been reading that a lot of the most effective medicine is moving towards individual genetics.
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Looking at the survey results at the end of the post, it was really disappointing to find that only half the people who went through this protocol were satisfied with results and nearly all of them (satisfied or not) had to drop over $5K (27% dropped $20K+).
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I've heard of Dr. Shoemaker before and associated him with mold illness, but it seems his new GENIE test is a different sort of thing. James's story in this blog and how he's used it to begin recovering from severe illness is inspiring. It seems that CIRS (Chronic Inflammatory Response Syndrome) may be responsible for some of our symptoms and potentially be set off by a bacterial infection in the nasal passages (if I'm reading this right).
I'm fairly confident nobody reading this has done this test yet, but has anyone else heard of it before this? Sounds extremely encouraging...and expensive. Of course, everything is expensive. Which would be a bit less of a problem if we absolutely knew it was going to work, but who has the funds to continually chase unsuccessful protocols?
https://www.healthrising.org/blog/2022/06/15/chronic-fatigue-syndrome-recovery-heyman-cirs/
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In fairness, the claim was never that the vaccine was going to prevent you from getting COVID, but it is supposed to prevent the worst cases.
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On 6/1/2022 at 6:44 PM, KiminOrlando said:
Didn't they have some kind of pill camera that you swallow and it takes pictures? Of course, he wants biopsies, so I know I am not getting out of this. He read that the POTS patient drank something called 'Drip Drop' and they were able to do it. I'm worried about my ANS overreacting and going into a spasm again, but he seems to have totally skipped over that. That is why I was in the ER.
I've been told that this isn't as accurate. Some doctors don't like to use it, especially if you have a family history.
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I had to cancel my last one due to the prep dehydrating me. Not only the prep, but they tell you not to drink any water for like 12 hours either. The Sjogren's/POTS combo didn't do well with that. That was a few years ago and still haven't figured out how to get through it and get it done.
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I immediately dropped about 15-20 pounds when my autoimmune problems first hit. Dropped another 20-25 when POTS/dysautonomia hit. I have since gained back all 40 pounds. The difference being there used to be some muscle, which is now fat. I can distinctly point to the weight gain starting the exact same time I started Lexapro, though my neuro denies they're connected. My diet hasn't changed. Of course I've been less active, but I was less active for the first year of POTS when I was losing weight too. Did you start any new medications around the time of this weight gain?
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They probably want proof that an autoimmune process is causing the SFN.
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Dysautonomia Int. just posted about the following study to their FB page. Essentially, a small amount of people are experiencing neurological symptoms consistent with autonomic dysfunction after vaccination. I believe I am in this group, as I was really knocked on my butt after the 2nd Moderna a year ago and have not gone for a booster. While this feels pretty validating, it's also frustrating because I want to protect myself from serious COVID complications, but certainly don't feel like I'm able to do that without just avoiding everyone now.
Article explanation:
Study itself:
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The potential of not being on the Mast Cell spectrum forever is encouraging, though I haven't found any medications that have solved it for me yet. That was a very interesting way he explained it with leaky cells.
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Yes, I think 60 mg is the standard dose, so anything around 20 or lower is low enough.
That's what I do - 10 mg P in morning, 2.5 mph C in evening - but if you have problems w/ low BP, Corlanor does not affect BP and won't lower it further.
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Sure, these are all things WE know and appreciate, but it won't help us with people that don't understand us. I don't want to wish ill on her, but I almost want to say it would read better to people if she struggled and was down for awhile before pulling through or at least wasn't able to tour again so quickly (again, not something I wish). I can almost hear friends and family in my head "Now you know what's wrong with you, just figure out what made her better."
@KiminOrlandoI was a bit of a couch potato, but in decent shape (meaning I got off the couch to exercise frequently, but not much else) when Sjogren's first hit, but then that motivated me to get in best shape of my life and then POTS hit, so I don't think the working out always helps.
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4 hours ago, JennKay said:
Thanks for sharing, @MTRJ75. I think I need to increase my propranolol to see if this helps. I know this is what my EP will tell me when I call his office today. Last night, the PVCs were ridiculous. I was definitely in bigemeny continuously for about an hour. It is so uncomfortable and makes me dizzy. They are frequent again this morning, but hopefully that will subside in an hour.
I found this article about nighttime PVCs: https://pubmed.ncbi.nlm.nih.gov/32067918/
Based on the abstract, seems like the authors found patients with frequent nighttime PVCs had greater sympathetic tone as measured by SDNN. Encouragingly, after ablation the SDNN was less biased.
Were you ever offered an ablation for your frequent PVCs? I know they are contraindicated in dysautonomia, but being in bigemny for extended periods of time has to qualify a person for an abaltion!!
No. No ablation, but bigemy wasn't extended. Upping propranolol usually isn't the answer. In fact, lower doses are recommended (and in my case lower doses work better than higher ones too) in POTS.
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I was prescribed 5 mg, but have been snapping them in half, taking 10 mg Propanolol early in the day because my BP tends to run high & the 2.5 mg Corlanor in the eve w/ dinner. And then rarely an extra dose if necessary during the day.
LDN = Low Dose Neltraxone - there are several threads here and throughout the internet on it. Seems to help a number of conditions in different ways, but hard to pinpoint exactly how.
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At first when I saw the following post on Dysautonomia International's Facebook, I was encouraged:
This is someone incredibly famous who suffers from all the same issues as I do.
She will bring publicity to the condition(s).
She gives hope that we may be able to over-come it.
At least that's how I hope people will see this, especially those who know someone suffering from the condition, but don't understand it.
However, I know that if anyone in my family read this, they'd tell me to look at all she's doing with the same condition as you, but you refuse to get off the couch/out of the house.
That's the way I'm afraid too many people will see this and it will backfire on those of us who are trying to get others to understand what we're dealing with.
Heat has brought on severe muscle aches/exhaustion, near constant sweating
in Dysautonomia Discussion
Posted
No, I don't feel lightheaded and this can even be while I'm reclined. My BP has actually been running higher (too high) the last six months or so. But it is a bit similar to the vasovagal issue I had with the blood draw that one time. The profuse sweating at least.