Hope

Thanks to you both. That is very reassuring.

I also have 4, my youngest is 9. Actually one of my oldest kids are out on their own. The two that are still home ages 21 and 19 work full time. My husband does all he can, but he himself is chronically ill with severe IBS/CFS but he absolutely takes my son out as much as he can, although the bulk of days are with me. I feel my son should be more involved with sports and/or activities, but we can't take him regularly to anything. We take him to events when we can but like you I only drive a little and where we live there are no neighbor children for him to run around with. I arrange for his friends to come over and for him to go to their houses when I can, but that too takes either energy or driving sometimes. I guess there's not much else to do. We all have our crosses in life. I just thought I would see if anybody had a better plan that they've worked out. It sounds like you and I are close to being in the same boat. Misery loves company, it gives me some comfort knowing I'm not the only one. Thanks.

I don't recognize this from my own experience, but my cousin has been very ill for about 5 years with out of control allergies, and food intolerances. She also has Lyme disease. For awhile, she was down to eating only boiled chicken and boiled potatoes, poor thing. She cannot tolerate many chemicals in the air though, like perfume, the smell of somebody's deodorant, air freshener. She passes out often and quickly. She hasn't gotten any solid answers but she keeps trying different doctors, treatments and tests of course. It will be interesting to see what they come up with for you!

I know there are a lot of parents with POTS on here. I wondered if there are any tips anybody would like to share? I've been muddling through this bad stretch for almost 2 years. My Cardiologist believes that I have had POTS since I was a teenager and that it's been waxing and waning since then. So I keep telling myself that I am going to pull out of this bad stretch if I keep working on it. Whether that happens or not, in the mean time my youngest son is sentenced to the effects of my illness. My husband works (thank the Lord), even though he has his own health issues, and my other children are grown adults with jobs, college, and their lives. They all do pitch in but it's really not enough. Most of the time he is with me and I can't get him out to be social very often. If I could afford it, I think I would hire a part time Nanny, but with only one of us working it's just not in the budget. I make myself feel better by thinking that he has it better than a lot of other kids in the world, and he really does. But I thought I would see what some of you all do with managing your kids lives when you are housebound?

I've looked through the archives and I see good things about Cerefolin. Is anybody here currently taking it and like it? Has anybody had any bad experiences with it?

I'm almost always worse in the morning. There are those days that I get worse again around 4:00pm, but usually I'm better off in the second half of the day.

Yes I get quite annoyed with my frequent urination. It comes and goes though and I certainly enjoy the break. I have had a cystoscopy and they didn't find anything really. They said I might try a mesh implant and glad I didn't since they seem to be causing problems in others.

What a great list! I want to print this and flash it every time I have to explain this illness, ha!

I checked probably 3/4 of the symptoms listed.

I agree with above posts, I'd like to see night sweats added. I would also be interested to see how many experience extremely fast HR, like 180+

I can't sing anymore, or very quickly I'm getting dizzy and grayed vision. This is an improvement. When my symptoms were worse, I couldn't have a conversation without this happening.

Sorry, I didn't read your post before I did the survey! I am not a young one, coming up on 46 here. I had the chicken pox as a child, then lost my immunity as an adult. I was tested because I was working in the Peds area of the hospital. So I was re-vaccinated in my late 20's.

Rich, I didn't test positive for SFN - but, do have some neuropathy and it runs in my family. If they don't take the biopsy in the right place it won't be picked up. Yet, I couldn't feel needle sticks when tested that way. That being said ---I think we have to go deeper then just saying there are issues with nerve fibers and their dysfunction. That would be a side effect of what I think is the under lying problem.

Personally, I think it all comes down to the immune system. The body is attacking itself and CAUSING these issues. Work on the immune system and maybe we will get better. Since I've been doing this - I'm starting to get the feeling back in my feet and lower legs. I used to not be able to feel the bottoms of my shoes - and now I can. It used to be when I'd run my hand up my leg there would be a strange electrical - stinging type feeling (neuropathy) I seldom have this now. There are times when I have more numbness and pain and times where things are near normal. Why is it that the nerves will sometimes - not feel something and other times it will be there?

If we try to get to the core of the problem - correct that - then maybe we will start to get better. I think focusing on autoimmune issues, good healthy diet and maybe genetic mutations of known dysfunctions --- might help us all. This is my focus at the present time.

Rich, you've put an awful lot of thought and research into this. I think maybe you are finding some of your puzzle pieces. Thanks for posting your theories.

Issie

I certainly do not know what comes first here, the chicken or the egg, but working on my immune system has greatly improved my symptoms. Slacking for just a few days in my routine will throw me back into symptoms worsening, as they are today!

So thankful that you and others are taking the time and have the means to do this kind of research.

Emma,

I think the medical professional's attitude toward POTS is the most frustrating part of this condition, at least for me.

If its so innocous why cant 25% of patients work in any capacity? Why did the yellow wiggle have to resign?

So the yellow Wiggle had to resign because of POTS?

I was making good progress, until 2 days ago. I relapsed, needing my mother to come over to take care of my son. I've just been resting and taking it easy since then. I thought it may be the weather and after listening to everyone here, I'm hopeful that when the heat breaks I will again make progress.

Not giving advice, just saying what seems to help me when I am having breathing problems. I think my breathing problems come often from not enough blood being in the lung area at that time (like a lot of other problems with pots, such as digestion) so I repeatedly go up on my toes and back down, which of course sends blood upward, just like when you point your toes before getting out of bed helps with dizziness (for me). I also use a heated rice pack on my lung area to help blood circulation, and taking a bath always seems to help my circulation in general so if I can't get comfortable breathing I hop in the tub. A shower does not work the same.

I've been losing a lot of hair lately. When I first got really sick last year it was really coming out. Then I stopped losing it for some reason. Now I am losing it again. Thankfully I had a full head to start with, but I see a lot of good advice on here!

That's very interesting! Before I was on my meds I would throw-up suddenly and hadn't felt sick a minute before. If I hadn't eaten, it was wretching, of course if I had eaten I was throwing up. It came on very suddenly and then I was fine. I will be interested in what they do for you.

Yes, people hate having me in the car! It's not constant though. On days that I feel well enough to drive, I see pretty normal.

How low of a dose do you take if you don't mind my asking? I have a low-dose 10mg here next to my bed that I have been trying to decide to try for like 3 months, but I can't get myself to take for fear of side effects.

I would have loved to have actually seen it, but I was in bed very early as usual. Glad somebody was able to enjoy it!

I seem to remember others here also believe they are affected by the full moon. I'm sure you've heard about the supermoon tonight. Also in my area there is a low-pressure system (always affects me), and throw in that my perimenopause hormones are on the fritz more this week. I'm thanking the Lord that today is Saturday and nobody is expecting anything from me today, and hubby is home and is taking my little guy to the movies!

I have started, stopped, and restarted Midodrine. I was started on 2.5mg tabs 3 times a day. I never got up to that dose though. One in the morning was plenty for me. Then I fugured out over the course of a month I have low blood pressure times and some not so low pressure times. In addition to getting some higher blood pressure times like 145/95 where I didn't need it, I was getting chest tightness taking just one whole one everyday. My primary said to knock down the dose, so I now take 1/2 a pill most mornings and I experience no chest tightness. I don't take it if my blood pressure is high enough to be in the normal range, but those days I check my blood pressure often to make sure it's still staying up in a good range.

Also, anytime I am restarting or uping my dose on any of my meds, I get the dizzies. One more thing. When taking the midodrine I do need to get up and around (even if it's just a lap around the kitchen), or it does seem to get my blood pressure up kinda high. I don't know if any of that helps...

I didn't read all 3 pages of responses, but fatigue is one of my worse symptoms. I have had CFS for years so I'm not sure where my POTS stops and the CFS picks up for fatigue, but I can't miss a day of taking my Stress B-complex. I also can't overdue, that is a sure set back.

I was given Midodrine about 3 weeks after my tilt table test. I was given a beta-blocker straight off, so Midodrine was second, I take it in addition to the beta-blocker. I was told to take it 3 times a day, but that is way too much for me. I currently only need 1/2 of a 2.5 pill to raise my blood pressure and it works for most of the day for me. A whole pill was giving me chest tightness.

I think my poor immune system coupled with too much stress on my body due to changing 40-something hormones, a miscarriage last summer, and an overall stressful life has plunged me into this prolonged episode of POTS. I say that because I am certain, now that I know what is going on, that I have had this since I was a teenager and have had symptoms waxing and waning throughout my life. Not sure if I have a poor immune system from all the illnesses I've had or if I have had all the illnesses because I have a poor immune system. When I was a teenager I would have like to have played tennis or run track, but I never felt well enough for that often feeling like I was going to pass out and fatigued. Before this years episode that has disabled me (hopefully temporarily), I was walking daily, biking often and with 4 kids, running from one thing to the next. My feet would hit the floor at 5:30 am and I would go until bedtime. Of course that has all changed. Now I am grateful that I have progressed from the "bed" to being able to take a shower standing up and not have to go to bed after!!!