MamaTrain

Hi Vepa! I’ve had these epeisodes happen to me and they are really weird & scary! My husband calls them my Parkinson’s episodes as I shake and twitch and can’t consciously stop it. I haven’t had one in a very long time but I remember they would be triggered by me feeling like I was too cold. I would fee like I had been hit by a truck when they were over!

I’ve wondered about this too. I once had someone who was really into it rub peppermint oil on my neck & temples for a headache I was complaining of. I had an episode like 15 mins later. Thought it was just me but then a few months later I had a really strong peppermint tea and had the same thing happen! I am also one of the weird ones who have an episode from vitamin E oil! LOL!

Are you in or right before your cycle? That makes a huge difference in a lot of people’s symptoms or the intensity of those symptoms! Hope you feel better!

I have the Apple watch and it does great for HR but doesn’t do BP or pulse OX. I use a separate BP (arm cuff) and pulse OX. I have taken video/photo with my phone of my readings to document what they were. The HR watches are such a great tool...they weren’t around when I was first sick in 2008. It would of costs hundreds of dollars to get 24 hour HR monitoring! Hope you get a formal diagnosis soon. You know something is not right in your body and you have to keep pushing on til you get an accurate DX and treatment! Best wishes to you!

I got my shipment last week and I have yet to drink an entire packet. I was apprehensive about the B vitamins as I lean towards HYPER-POTS so stimulants, including B vitamins, can make me feel bad. I wanted to just drink a little bit at a time and see how I felt. I am struggling with the taste! It’s like smelling the inside of a multivitamin bottle every time you drink a sip! I plan on mixing it with some Pedialyte and trying that. I’ll post again if I can get an entire one down!

My experience has been good except when I had a rapid infusion done. It was like a few hours and it made me feel really weird afterward. When I have had a slow infusion I always feel great!

Did you end up trying it Kaykay?

I will only take the Z-PAC! Never had an issue in the 3 times I've used it.

So sorry you are experiencing this Matt! Accutane is a little scary all in its self. Then you got a few different meds in there too so it's hard to really pin point which one. Most POTS peeps don't tolerate meds well even when they did before they were sick. When considering situations in the future try to find out the meds suggested and check into them if you can. I agree with the previous poster on not letting yourself get too sucked into the symptoms. When I get those bad days I still freak out a little that it will NEVER go away but then I remember to talk myself down and remind myself that I have been through this 100's of times before and it will be fine in time. On a side note tynkaser treatment for your acne. We did that for our son and it worked amazing only after 3 treatments! Hope you feel better soon Matt!

For starters when I even get a hint that I'm getting sick I start taking Elderberry extract like every 4 hours and it usually works like a charm to fend it off or lessen the severity. If I do get sick I use vicks vapor rub and cough drops to help with cough & congestion. Now bronchitis is nothing to mess with...I used to get it every year in my 20's. I have read in other POTS groups that regular Mucinex has been good for some. I hope you feel better soon...nothing is worse than feeling bad on top of feeling bad!

Hello KDUB! I am 46 female and have POTS for 8 years. I lean towards hyperPOTS. A year before I got really sick I was put on Effexor for my insomnia & feelings of anxiety/panic. Little did I know that Effexor was the LAST thing my poor brain needed! I was also on Ambien at the same time. I was waking up on Ambien. My doctor could hardly believe it. When I went up to the next dose on Effexor I felt terrible and stopped taking it. I kept saying I feel MORE anxious. Well that's because I was already having way too much norepi going on in my brain. So I suspect the meds they gave you didn't help matters but did it cause you're POTS is hard to say. I too may have been suffering the effects of POTS before it really reared its ugly head. I'll never know I just know that I have to deal with it now. I suggest not using anything that gives you "energy" or is caffeinated. If you can get a doctor to give you a tilt table test they can draw your blood on tilt to see how much norepinephrine you're producing when you stand up. Unfortunately a lot of meds make POTS people feel even weirder or worse. I tried so many things. All of them made me feel terrible. Hormones play a big part in POTS but as a male Inwoukdnt think you'd have so much of that like the ladies do. Low "T" at 24 isn't too good. Not sure what your experiencing but I would suggest learning to self talk through bad episodes. This can be incredibly helpful because they can be scary. The middle of the night ones were the worst for me. Now when it happens I just keep saying to myself "relax it's OK you've been through this a 100 times you're gonna be fine" and it passes. I hate that this has happened to you and you're so young. It does get better but the process of that is hard. Keep your chin up. You will make it through this! Cyber hugs to you!

So sorry for your loss! I can say from my own grief experience it can really mess with your wellness. I am 8 years into my POTS life and I am very functional now but I still worry I'm going to go back "there" and be in constant episode mode like when I first got sick. I've had some times when I thought oh Lord please no but they came and went. I am in menopause now and it's been a little challenging but I believe it's only temporary as I go through the change. I pray you will feel more like what you had been and this is a short lived set back!

If you're gonna drink remember to drink! Drink water/sports drinks before each drink and between drinks. This will help but sometimes even when you do everything "right" you still feel like you wished you didn't do it! I am 4 years into my Dysauto and it was only a year ago that I could even have 1 beer without going into a full blown episode. I miss it at times but have gotten used to my new way of living! Another thing to consider is alcohol starts out as a suppressant but metabolizes into a stimulant. Now most people don't even notice this effect but people like us can be set off by that stimulant effect especially if you are or lean towards hyper-POTS like I do.

Hello, I haven't been on here in a while and I'm sure this has been brought up in some way, shape or form before but does exercise fatigue get better with continued exercise? Every time I exercise I am usually VERY tired the next day and most times I have some sort of episode in the middle of the night and I know it's from the exercise because it only happens when I exercise. Your thoughts are greatly appreciated! KC

I do have hypothyroidism and when we tried to up my dosage of meds I felt all out of sorts. This disorder makes any change in the system seem like a huge one! Slow and steady is the way to go with dysautonomia! Whereabouts do you live in Wyoming? I just went there over the summer and it was so beautiful. I was in Alpine! :-)

I am pretty much the same way now 2 1/2 yr after onset. I only have the major heart rate increase in the mornings but in the beginning, like the first 6 months, it was anytime I stood up and it was just terrible in the morning! I think the theory of being sensitive to the changing hormone levels could be accurate as a dyautonomic body notices EVERYTHING! KC

KayJay, My dysautonomia was brought to the forefront of my life after I accidentally took my sons Ritalin one morning instead of my thyroid medicine. I was in the ER 4 hours later! They said it was a "panic attack" but it never went away and now that we know what the problem is we now know that Ritalin was the last thing I needed since I already had high norepi levels! Be careful with stimulants that raise those levels if you are already hyper POTS. Have you tried the 5hr Energy type stuff? KC

It can be quite confusing if you ask me. My BP is usually on the lower side of things. When I get up in the morning I have the drop in BP with the big HR increase. However when I finally did my TTT I was surprised when they said my BP actually went up with my 45+ beat increase. My norepi levels were just shy of the "offical" hyper POTS reading of 600. She said I lean towards the hyper side but also have low BP at times as well. Clear as mud I tell you! Are you sensitive to stimulants? KC

When I finally had my TTT done my blood pressure did not fall either. It acutally spiked because I lean towards the hyper end of POTS. I have the drop in BP only in the morning for some reason. My HR went from 77 to 144 so that was proof enough to my cardiologist! Did you have the jump in HR? KC

Definetely notice this! Last time I did yoga I had a bad episode in the middle of the night. Crazy!

I totally know what you are saying! I am so sick of wondering ALL THE TIME about what caused this reaction or that episode or whatever it may be! A mental health day is in order for sure!

Lieze, I dont think it was the running around cause I've done way more than that before with no episode so I dont know. I am just wearing the insoles a little bit at a time and try to build up slowly! KC

I know from my experience that if you are hyper POTS you may want to stay away from SNRI type ones. They raise your norepinephrine levels and if you already make a lot it is not good! Effexor is one that gave me big problems!

Ok I may be crazy but yesterday I got my brand new pair of custom made orthodics for my shoes because I have a bad case of plantars fascitis in my left foot. They told me only wear them a few hours at a time to build up to them. I wore them for 2 hours yesterday and I was running around a bit. They felt odd but I expected that. I took them off when I got home and about 2 hours later I started having a pretty good episode. During the episode my feet and calves were hurting and twitching and feeling like they were going to cramp up! The orthodics are they only thing that was different and I havent had an episode like that since I did yoga a month or so ago! I would get POTSy when I would ice and then heat my foot too. CRAZY! I know there are alot of nerves in your foot so I have to ask has anyone else had wierd experiences like this? KC

The article was a little "sciencey" for me so I tried to read between the lines and guess that it was Vitamin C they were talking about. Is that right? I also dont know much about low flow POTS. I have heard of other types like developmental POTS, Hyper POTS, partial POTS and what not but not low flow. What does that mean? I lean towards hyper POTS as I put out alot of norepi so does this apply to me? KC