StayAtHomeMom

That kind of sounds terrifying. It probably isn't as bad as its name though. I know nothing about it but will definitely have to look it up later tonight. Might be an interesting read. It sounds like you have an online portal. I love those. It makes it super easy to check with a doctor to have a quick question answered.

My Beta Blocker only drops my BP about 10 points but I also take midodrine (about a year after I started the beta blocker) and it evens it out. My specialist has never mentioned the Ivabradine as an alternative. I may have to ask him the next time I see him if that is an option for me. Sounds like it may be something to try when my effectiveness of my meds totally wear off.

Talk to your internist that diagnosed you. See if she would be willing to prescribe you with medications. I would start with a low dose beta blocker. If she needs convincing look up some studies. It sounds like you are doing everything right, your body just needs a little help. For brain fog, my Beta Blocker helped that considerably and I use caffeine to help boost it. I know that seems counter productive but caffeine from soda doesn't bother my HR. For fatigue, again that is caffeine. I have not found a great remedy for that. It helps to try to stay on the same sleep schedule. And I can't nap during the day or it makes it worse. I also try for 10 hours or more for sleep. My GI issues I used to use kefir. Since I started the keto diet back in October my GI issues have considerably lessened. I still get diarrhea about once a week sometimes every other week. But it is not like it was where it was multiple times a day, everyday. Not sure why my body responded that way. I am just glad it did. I really needed a break from that set of symptoms. Not sure why salt loading isn't working for. Trying looking at specific numbers you are intaking. Personally I don't worry about the salt much, I just listen to my body. When I don't feel good I crave salt. Before my diagnosis I used to dip fries in salt (like people would do with ketchup) my family thought I was nuts. But I felt better. And my tests showed my sodium numbers were fine. Even now I just add salt to as many meals as I can and not be afraid of processed stuff. I am surprised at how similar our symptoms are. Only differences are I have never fainted. And I have breathing issues as my major symptom. But BP ad HR are even similar ranges. Things get better. Very slowly. I am over 3 years in since my body started malfunctioning. Next month makes 2 years since my diagnosis. I take life a lot slower now, but I get to see more scenery too.

Very happy for you. Celebrate those victories!!

I take metoprolol to help my heart rate. I still get breakthrough tachycardia with it occasionally but I am learning triggers and pacing my self. I still get my other symptoms but my midodrine helps with those. It is like you described, even though the heart rate is stable the symptoms still remain sometimes. It is not as severe with my Beta Blocker but not gone. There doesn't seem to be a magic cure all pill, but over time and a combination of medications you can feel better. It is just finding it. And everyone is different.

The smallest things can cause what you call a crash. Was the shot a live virus shot? Maybe it was just a coincidence. Anything else in your life that could trigger?

You sound kind of like me. I found a specialist on accident but he doesn't seem too interested in finding an underlying cause. So mostly I discuss ideas with my PCP every couple months when I see her. I am planning a semi-close "university setting" sometime this year to try to find my underlying cause. I believe it has a genetic component, I am just waiting for confirmation that my oldest son has it as well. You can look up those tender spots fibromyalgia has. You only need so many of them out of the over 20 spots. I have a friend who has it and she poked a few common spots. She didn't think I had it. But I have some similar symptoms as her. I would start with the florinef first. It is prescribed for POTS for some people. I agree I wouldn't start them at the same time. Especially if you react oddly to any kind of medication.

Good luck. I hope everything works out.

I get this but I have always assumed it was my midodrine. The medication causes a similar effect to my scalp so I have assumed it was because of the medicine. I wouldn't go to the ER unless you talk to your doctor first. Especially since a lot of insurances are getting to the point where they don't want to pay out. Try to relax and find something immersive to do. Like a great book or a video game.

There are lots of different kinds of beta blockers. Your cardiologist could advise you best. I would also suggest a rheumatologist or someone to treat your Sjogren's. A lot of people who have autoimmune and dysautonomia feel much better if not cured when they treat their underlying autoimmune. I am kind of hoping that is what is causing mine. At least then I will have hope for a "cure".

As far as I know I don't have HyperPOTS and I have trouble breathing correctly. Occasionally it takes more effect, kind of like you describe but mostly it is I can't get a satisfying breathe. I would speak to the doctor that is treating you and see if it is normal for what you are describing. I have had a cortisol test done and they can easily check that with some blood work. Did you have a urine catacholmine test to rule out a tumor or hyperPOTS?

She was on a handful of autoimmune meds before it started. She has been on low dose steroids for about 7 years or so now. I don't remember when it exactly started but it has been about 3 years. I will have to mention it to her again and see if she will finally go see a podiatrist and maybe get her an answer. She doesn't seem to care much because it is so low down on her medical issues.

You could also see if your doc would prescribe you an epi-pen just in case. It may make your POTS go crazy but it would allow you to breath and get to the ER. I had a similar reaction when I had a lipoma removed on my hip. I changed the tape and it was loads better. I feel mine is more the glue not the latex. Unless latex is in that glue. I had red marks where the tape was for about a week after I stopped using it.

Do you take anything for your tachycardia? That seems like a pretty large jump. BP looks pretty good though.

How bad of a latex allergy do you have? I would ask the pharmacist if it would be worth trying even with the allergy.

She is treating her RA with infusions (like remicaid but it is a different one). They won't give her oral anti-fungals because of her liver numbers, and the over the counter stuff doesn't work. She refuses to go to a podiatrist. She "has enough doctors already". It would be interesting to see though. It almost seems like a lot of the autoimmunes are interconnected. I have heard once you get one you usually get at least one more. And her and 2 of her sisters have autoimmune but different ones. Between the 3 of them they have Lupus, Sjogren's, hashi's, and RA. And the are between 50-60. All recently diagnosised.

I am sorry it is not working. There are other med combinations to try. And dosages. It is important to keep in touch with your doctor's to help find the right combination. Yes I agree with the feeling like an old lady. When I walk with my hubby he has to slow down to my walking speed. We call it my slow-turtle speed

Try no bread and pasta. If you notice a difference look into a low carb. I spoke to my doctor beforehand and she gave me the green light. It has made a difference in my GI issues.

Have you tried an allergist?

It always kind of blew my mind how difficult things are made for you when you are sick. It is worse when you have no outward signs. I try to live by the rule, don't stress out over things you can't change. I know sometimes you can't help it but try to take a timeout of no stress. Stress makes everything worse. Play a video game or meditate. Even just 10 minutes can make a difference.

Sounds like a lot of miscommunication. My PCP is part of a large network of doctors and they have walk-in clinics and work with 2 of my local hospitals. So everything is nice and neat in one place. I have an e-record they can all pull and add things to. EXCEPT my specialist. It always makes it harder that way. One suggestion I would make is get a binder and put all of your records in it. I am in the process of starting it. You can request the new pages every visit. It will make it easier in the long run, especially if you need to apply for government disability. There is a place I want to check out an hour away. They said I needed all my records before they set the appt because they want to make sure I start seeing people in the right place. So the binder would be very helpful

Crumbling? Like you barely touch the nail and it just crumbles off? My mom has that issue and the doctor said it was fungal and there was nothing they could do because her liver number are too high from her RA meds. I always thought it was a weird thing for her toenails to do. Her old PCP told her to put nail Polish on it.

I totally agree. I have to know what is going on with my body. What I thought was always normal is actually not. And yes, knowledge is power. The more you understand about what is going on, the easier it is to deal with stuff. I have a lot of issues with taking my meds too. I got through spurts for my allergy meds. The only thing I take reliably is my metoperlol. And even that I should take it twice a day. Normally I only take it in the morning

A nerve conduction test is usually performed by a neurologist. It is a slightly painful way to see how fast electrical current runs through the nerves. Majority of the test feels like you are touching an electric fence for a second. Then the last 5 minutes my neurologist came in and poked me with some kind of needle in about 20 different places. I was sore from that part but I found it worth it because I didn't have nerve damage. And I know for a fact. I have also read that a biopsy can be taken to see if you have nerve damage in the smaller nerves. Have they checked your hormone levels? I have read some normal issues can cause eye dilation issues.

Your symptoms can vary. Also if they did the poor man's improperly (which they have a habit of doing) it can skew the results. I had a poor man's done 3 times, and my son once in a doctor's office. They did them all differently and they all said I was fine. Did it myself, and an actual TTT twice and I have POTS. My symptoms can vary by day and some people can vary by the time a day.