JimL

22 minutes ago, CallieAndToby22 said:

I take melatonin and a fist full of pills. This methyl folate just penetrates through it all and causes insomnia no matter what I do. My mom found a specialist though so for now I won't take it and hopefully they can shed some light on this supplement. 

I find benadryl puts me out. I haven't had to use it in a long time. I use a CPAP as well. Maybe the timing of your supplements matter. 

2 hours ago, Derek1987 said:

Thanks for the reply. I'm checking out this website. I see they have different compression levels. Is there a certain compression level people with our condition should be looking at?

My cardiologist said 20-30, although the vascular doc I went to years ago specified 30-40. You really need to measure your legs so you get the right size and the pressure is in the range specified. 20-30 is a good starting point. If you have a cardiologist or vascular doc, ask them. Maybe your PCP would know. Learn how to put them on right too as you don't want to damage them with runs. 

20 minutes ago, CallieAndToby22 said:

I do have the custom ones. Haven't worn them in awhile. 

I had to get custom before I lost a lot of weight. Custom are a lot more money. 

Have you tried melatonin or benedryl?

Oh yeah, open toe is a little easier to put on and more comfortable, at least to me. 

I wore compression stockings since 1993 due to DVTs i got then, knee high on my right leg. Mediven makes the best, IMO, but there are others like Jobst and Sigvaris that are supposed to be good. That said, I've had to go thigh high and I got them from Walgreens, online. One place you can look is brightlifedirect.com. The ones from Walgreens are 20-30 and have a silicon band. My medivens have a silicon band too, but they are 30-40 and heavier duty than the walgreens. I also have a pair or full length, 30-40, but they are a pain to put on. Depending on your measurements, you may be able to buy off the shelf or need custom. The stockings help, but they don't cure or make it possible for me to be up on my feet more than 20-30 minutes. When I get to that point, I am up to 120-130bpm and want to lie down or at least sit down. Bright life has everything, fashionable and not. 

I have a friend with epilepsy and a strobe light will set him off. Are they sure it's not epilepsy?

10 hours ago, ScottS said:

On occasion, I experience what FileTrekker wrote in exactly that same way. It's as if my autonomic software (if there is such a thing) is resetting itself. It's rarely so intense that I would describe it as feeling awful. A bit disconcerting, yes - and a moment worthy of a strong, internalized obscenity - but that's it.

Oh, and, what JimL wrote reminds me of what Ferris Bueller's dad recommended as helpful for dealing with his "illness":

But if it works, it works.

Cooling the brain stem can calm one's body down. 

1 hour ago, potsiebarbie said:

Of course. Lol I didn't find anything pleasant so I figured I'd see if there were any personal experiences. I find that Google likes to scare you and forums give more perspective. Lol

Dr Google is either scary or incompetent. Sometimes it seems like a lot of the site copy and paste the same stuff. I try to find unique stuff on pots or anything and it's a chore. Or the data will be general. Like cancer can cause X. Ok. What kind of cancer? It's like I need to go to medical school just to know where to find answers. 

What is low blood volume from? 

Yeah. Have you ever tried an ice pack on your upper neck/base of skull. Try it for a few minutes and see if that helps. 

I know there are co-morbidities with certain developmental and other disorders, like Tourettes, ADHD, ADD, Autism, OCD, ODD, etc. Often people will them in pairs.

Did you consult Dr Google? Mine were in normal range a few weeks ago. 

Some day. We've made so much progress in some areas, like gene therapy. They can actually splice in gene modifications now, but yet when it comes to some diseases, they are still a long way off, like ALS, Amyloidosis, certain brain tumors, etc, all death sentences. We've wasted trillions on non-sense. 

Probably coincidental. There would have to be studies. If there was correlation, why? Then it might justify those that think it's in the head and I mean psychological. If our thoughts brought this on, that's sad. 

58 minutes ago, Courtney812 said:

I definitely suspected adrenal issues before. 

I've just had a rough life, full of stress and it seemed that each pregnancy made me pretty sick postpartum and hormones mess with me during ovulation.  

 

Any really stressful situation makes me physically sick and I think that's what went on here. The hormones of pregnancy with the pure terror stress of the what if I get worse never get better... I just overloaded my system 

Have they checked the adrenal levels? Usually they can prescribe meds to tone that down. 

2 hours ago, Derek1987 said:

My favorite place to be is my dark quiet bedroom. I have the windows blacked out. Sounds of conversation or tv seems to get my adrenaline going sometimes. I'm always telling my wife to turn the volume down on the tv or her phone. Light bothers me when I get my frequent headaches. I really need to lay off of the aspirin. I'm not sure if this is what you are referring to. When I go anywhere public now my hands are sweating. Adrenaline and anxiety flowing.

I was like that the day after my spine surgery. I had a CSF leak and I felt like my head was in a vise. What happened was the PT people sat me up and my head hurt so bad I would have put a gun in my mouth to stop it. They laid me down head low and turned off the lights and shaded the windows. That was Halloween. One of my kids has autism and when she runs around flapping and yelling, I feel like I am going to jump out of my skin. It never used to bother me. As far as stomach goes, things turn it now. I could watch my own surgery at one time and not be freaked. It's a reversal of a lot of things. 

Thanks and welcome. 

Your resting HR was in the 30's? Wow, that's super low. One thing that might help is cognitive behavioral therapy. It's good to talk to a competent therapist. As far as the neck goes, I've seen a video on how CSF leaks can cause POTS symptoms and problems with cervical spinal cord could cause issues too. That said, if you have adrenal caused pots, I think stress could cause it to flare. A competent doctor familiar with POTS could clarify that. I hope you get better. 

Some smells for me, sounds more so. Does light bother you at all or motion? I used to be able to stomach anything and be swung by my feet on a chandelier, but now, lots of stuff sets me off. 

Being bedridden is bad for anyone physically and emotionally. Maybe getting some sort of physical therapy would be good. 

4 hours ago, StayAtHomeMom said:

Certain viruses have been linked as triggers. But we have never had any of them. I suspect hEDS because of the flexibility that I have, compared to my husband, that I have seemed to have passed on to my boys. But hEDS is not a perfect fit because I have never had official dislocations or surgeries to correct things. Autoimmune feels like a better fit, but my testing keeps coming back negative. I know I need to see a rheumatologist to rule things out, but I hate seeing a new doctor that is going to look at me like I am crazy. So I have been taking a break for a little while. 

true, but viruses and bacteria can cause autoimmune responses and I guess that's what I meant. I don't have EDS although my cardiologists was curious about Marfans. While I am tall, I don't have those traits. I think I ate something bad, got H Pylori that wasn't treated right and it triggered a lot of the stuff I have now. On top of it, I've had spine surgery and removal of a lapband in the last 5 months. I am prone to bone spurs and stenosis of vertibrae. 

58 minutes ago, StayAtHomeMom said:

Yea, a bad dream is a good description. Unfortunately it is not. My oldest son has been showing signs and symptoms as long as me, finally got him into see my specialist and it looks like he has a good chance of having it too. He has testing next week. It feels kind of surreal. Had never heard of POTS and for the last few years it is always on my mind. Worrying what is going to cause symptoms to get worse so I can avoid it. 

I have to wonder if there is some virus or bacteria that causes this. 

7 hours ago, StayAtHomeMom said:

Bread, pasta, and heavy foods. I went keto (to lose some weight) and I noticed the bloating has mostly stopped. Not sure 100% it is from the diet change. But since October I haven't had any heartburn, and the bloating has stopped. My bowel movements have dramatically improved. When I am finished losing the weight I intend to stay low carb in the hopes that my GI problems will stay away. BTW I don't have celiac, I was already tested for that. 

I tried going back to keto again. I did it for 16 months and because of the GI symptoms I was having, decided to stop and see if it helped. A couple months later POTS started. My GI tract tends to be slower with keto though, unless I get the fiber up. The other thing is my pulse rate doesn't seem as bad on keto. I just can't believe POTS is responsible for all the symptoms I am having. It's like a bad dream.  

20 minutes ago, StayAtHomeMom said:

I noticed in the beginning anything that would make my stomach bloat would make the breathing worse. But honestly even with diet changes it hasn't gone away totally. It just varies in intensity for me. I did notice the Rolaids with gas relief would help if it was really bad. But that only helps enough to avoid the ER. 

What is the bloat from? I get it too.