MTRJ75

This is exactly how I describe it or like being hit in the head. It's hard to describe these symptoms and sensations to people who don't experience them. It wasn't a gradual thing for me either and went one eye at a time. I can remember the first time I was sitting at the computer when things suddenly blurred in my left eye and then a few months later my right eye. Severity seems to alternate and ebb and flow.

No. None at all. The surges have been more moderate the last few weeks (at least for me, though they would probably still send a normy to the ER), but I'm still struggling every day it's nothing I can figure out. Maybe the vaccine, maybe weather changes, but I seem to have some type of issue with every weather condition.

I've had to come at my neurologist several times with MCAS, but thankfully he's remained open minded and curious, even if that's not his area of expertise. If you can't find an expert in the specific area, having a couple of doctors who at least care and are willing to look into things helps so much. One of my first trips to the ER around five years ago, the ER doc said that what I was describing can't possibly be a neurological disorder then gave me a xanax and tried to explain to me that 98% of the time it's anxiety. When I asked what happens in the other 2% of cases, he left the room and I never saw him again. I always had in my head that I was going to eventually go back to them with a concrete diagnosis and shove it down their throat, but apparently that would do little good because it's not just him, it's the entire system. You can only hope that with these chronic conditions becoming more and more prevalent and recognized that doctors would start getting educated. I hardly ever see my primary anymore because he had no idea what I'm dealing with, but at least he'll give me referrals to people who might. It's an exhaustive process, especially if you can't travel and have to do all this on your own.

Started this product a couple of weeks ago, taking 1 capsule twice a day because at the dosage they suggest on the bottle (1 for every 44 lbs of body weight), I'd be going through about 3 bottles per month at an unaffordable rate. Unfortunately, I haven't yet seen any changes at this dosage. I'm not seven sure if I should bother increasing because even it it works at double the dosage, it would probably be unaffordable. It's somewhat similar to when I followed a protocol for high dosage d-ribose and ubiquinol a few months ago. Felt a bit better after a few weeks, but it was quite expensive to keep up that pace and when I dropped back down to a more standard dose, the benefits disappeared.

That's where a lot of the confusion stems from: Naltrexone is for people recovering from addiction, but LDN (low dose) has been found to have positive uses in many conditions. However, it doesn't seem to be well studied because it's too cheap and not worth the money to do so. In LDN, you're generally taking around 10% of the dose that people are taking for addiction recovery.

Just found this info that I wished I had previously: https://www.whoop.com/thelocker/podcast-121-covid-vaccines-doses-heart-rate-sleep/

When you do a pharmacy search on LDNResearchTrust.org you'll get lots of options.

I've made some progress on this front with a mail order pharmacy listed on the LDNResearchTrust.org website. That's in line with the price I was quoted as well up to 6 mg per day. I really think this would be much easier for you @KiminOrlando I can't remember the pharmacy off the top of my head right now, but will come back and post later (or add to this one) if the link is allowable.

Yes, this is what my doctors and I decided as well. There are no good choices, but it's very likely the lesser of two evils.

Moderna #2 yesterday. Today is not fun. Resting heart rate around 95 even w/ beta blocker (so 20-25 bpm above what's been normal) and non-stop skipping even sitting still. Rest of the body feels like I've been in a fight with the Hulk. But there's a storm coming too with winds whipping up outside, so I'm getting whammied on multiple fronts today.

I've gone on LDNResearchTrust.org and located compounding pharmacies. I'm going to contact them and ask them what the deal is and how much it costs. I was led to believe it wasn't very expensive and chopping the 50 mg pills down to the intended 1-4 mg dose can't be optimal. I've also had the cardiologist and neurologist both suggest cannabis. The cardio whispered it, but the neuro was a bit more enthusiastic about it. I know this certainly isn't covered by insurance, so I may end up spending a good chunk of disability income on alternate medications, but if they help, so be it. Anything to get out of feeling like this anymore. A severe thunderstorm last night brought drenching sweats and I felt like my head was going to burst about a half hour before the storm hit.

Neuro wants to keep with the current treatment until we're sure all vaccine effects have passed. He thinks I may still be lit up from that and some weather changes. He's also prescribing LDN, but I'm not sure he understands how to do it. At first he said the pills were 50 mg and I should just break them in half, but I sent him to a few sites that explained how LDN is different than just breaking a naltrexone pill in half. May end up starting a new thread for some more direction from those who have tried it.

I think it was the first thing the neuro mentioned as easy and over the counter, but I also remember it being the first thing mentioned here: https://www.healthrising.org/blog/2018/09/19/winning-the-lottery-novel-treatments-return-severely-ill-pots-patient-to-near-health/

He is not. At first, he wasn't buying it, but he's very good about looking into things he doesn't know about. We got to a point where he admitted that we've tried almost everything he knew and has become more open to my suggestions, one of which is LDN, which I'm planning on revisiting with him (another is some combination of THC with the CBD I'm currently using). Is LDN an H1/2 blocker as well? My biggest concern would be telling him that none of this worked and him going back to the idea that it must not be MCAS because at first, his idea of it was much narrower than including a lot of our less openly visible symptoms.

I started on Clarinex/Desloratadine (H1) two months ago. Added Pepcid (H2) a month back. Last week, I included a product with Quercetin, a mast cell stabilizer. I've seen absolutely no improvement in what I believe are MCAS symptoms or even allergy symptoms. I still feel like there's an oven heating up in my chest and coat hanger area around the back of my neck every day. What next? I have to speak with the neurologist on Tuesday because I've been having daily surges, if not full blown flares for the last few weeks. Has anyone gotten their doctor to finally agree to treat for MCAS, but not had anything they've thrown at it work?

Ironically, my fourth flare up in less than three weeks today. Blood pressure has been as high as 147/98 today. Missed an in office appointment with the cardiologist and had to do it over the phone. She's not immediately concerned with the blood pressure in the short term as long as it doesn't get too high. There are a few reasons we talked about why it could be increasing. 1 - Weight gain over the last year (30 pounds), possibly connected to Lexapro (gain started around the same time w/o dietary changes). 2 - Switch from Propanolol to Ivabradine. Ivabradine has helped some heart rate issues more than Propanolol, but it doesn't affect blood pressure at all. She said I could combine them and not to worry about my heart rate dipping too low since it's such a low dose (10 mg Propanolol, 2.5 Ivabradine if snap it in half). 3 - Vaccine. She's seen some weird results from the vax and can't necessarily say it is the reason for BP rise or the increase in flare ups over the last few weeks, but it does activate immune system (and probably nervous system). It would make sense. But she still advised getting the second shot next week. I'm kinda hoping it is the vax, as long as it means the flare ups are going to calm down after a few months. 4 - I have to call the neurologist tomorrow and find out if the new meds we're trying to control mast cells with are causing the BP rise too. Unfortunately, they don't seem to be doing what I hoped anyway. Been on an H1 & H2 for a few months now and I'm still getting daily allergies, my body feels like an oven frequently and I'm still flaring. So I guess we really still don't know anything. All I know is that every muscle in my body is flaring, my BP is still elevated and my fight or flight has been lit up with drenching sweats and nausea most of the day.

So this is happening again today. I'm not sure what kind of neuropathy this is, but every muscle in my body is cramping and squeezing. I seemed to set it off by walking outside with the dog and standing in 70 degree sunshine for less than five minutes. Since coming in, every muscle in my body (arms, legs, chest, abdomen, neck, even head) has been in indescribable discomfort. Feels like it has something to do with lactic acid, but what is the mechanism here? Burning, nausea, bladder and bowel emptying, blurriness. Everything is going on right now. The exertions needed to set me off are becoming less and less too recently. I'm generally fine if I don't move from the couch, but d*** it, is this some kind of neuropathy that's gotten so bad that I can barely stand any stimulation at all now?

Thanks. I still have some Propanolol on hand, but I'm afraid to use it during these flares because my HR hasn't been increased recently. I've been 70-75 during these flares, of which I'm currently having another one right now.

Also now reading that Ivabradine/Corlanor does not lower blood pressure, as the Propanolol may have been doing. It has helped with some other rate and skip issues I feel, so it's not really something I'm really willing to go back on and using a combination would probably drop my heart rate too low since I'm on a low dose anyway.

I mixed up my meds @Pistol. Statins are for cholesterol, not BP of course. I'm not a candidate for frequent IV at this point and diet isn't helping unfortunately.

Sure, we certainly can't go to a job and labor every day (or even any days for some of us), but I work from home and can freelance. If I'm feeling well enough, I have the opportunity to take on extra assignments, but now I can't do so in any given month unless I'm sure I can do so permanently. Why would the government want to discourage me from not receiving money from them for a month or two. With many people working from home now and so many different ways to earn money with the internet if you're creative and energetic enough, for people with chronic illness there should be some type of period (say 6 months) of above threshold earning before disability is permanently taken away.,

I'm not sure what you mean. What about beta blockers? They help lower your heart rate, but they're not going to allow me to comfortably eat carbs.

Well, I don't know how it happened, but over the last week or so, my blood pressure has been consistently in the 130-140/85-90 range unless I'm lying flat. I hadn't been taking it much prior to that, but I have gained over 30 pounds since starting Lexapro about a year and a half ago. I figure that has to be a factor, but are there any others here with high blood pressure and if so, how has it been treated (if medications are needed) w/o having to cut down on salt? I absolutely dread statins, but have a cardio appt next week and fear that's going to be the direction. I've floated borderline high in the past, before dysautonomia, but even then, not this high except for rare occasions of stress.

I've been mostly Paleo for the last four or five years with the best of intentions. Most of my carbs come from starchy veggies like sweet potatoes at this point. But even if I have some kinda gluten free pasta or pizza, it will still set off a mess of uncomfortable activity.

Isn’t really ridiculous that you get punished for trying to better yourself and wanting to take less money from them. It’s such a self defeating system in some ways. There’s really no policy in place for chronic illness. That really has to change. I wish some organization were advocating for this. Let us work when we can but realize we may need something to fall back on once it’s recognized we have these illnesses because there are so many ways one can make money now at home if they’re well enough with some creativity.