Help4Me Posted January 8, 2019 Report Share Posted January 8, 2019 I have several good days in a row and start to feel like I have found a system that is working...ie foods, meds, supplements etc......then I will have some really bad days that put me right back to feel like I am dying again......is this "NORMAL" with POTS>......if I can have one good day why can't they continue.....and why can't I find a way to improve......this is so discouraging....every time I get my hopes up that I may get stronger....I end up back being a wet noodle again ....... Quote Link to comment Share on other sites More sharing options...
Guest ScottS Posted January 8, 2019 Report Share Posted January 8, 2019 I had a bad day yesterday. My dysautonomia (POTS and another as yet unknown) had flared over night (mostly in my gut though for the first hour or so after going to bed I experienced constant (intense) pain in my lower extremities. My gut continued to flare throughout the morning, which in turn set me off into a cycle of on and off dizziness, the odd heart palpitation and the resulting stress. My weird vision stuff flared. I did manage to do around 1.5 hours of recovery yoga (and some work) and that helped calm things down a bit, though from dawn to dusk all I really felt like doing was waiting out the day until I could go back to bed (in hope that a better night sleep would lead to a better day tomorrow, which is now today). And it, more or less, has. Aside from a bit of (my usual wonky) gut stuff, I'm doing okay today. No dizziness. No disorientation. No weird vision stuff. No palpitations. No tension in my diaphragm. No extreme fatigue. No wet noodliness. (Which spell check wants to correct to goodliness!) For me, the real bugger with all the on/off, good/bad cycles is the sheer unpredictability of it all. I eat a very bland diet that works for me, most of the time. (My idea of living dangerously is a square and a half of dark chocolate with hazelnuts). I keep regular hours and am disciplined with my routines of exercise, stress management and good sleep hygiene. I'm vigilant in my (24 hour) watch of my hydration, salt and electrolyte levels. Blah, blah and blah! So, is what you're experiencing "NORMAL"? For you, maybe yes. Sorry to say. But then again, who is to say that that one magic day (when it all goes away) isn't on your and my horizons? Even if it is (admittedly) easy to be optimistic on a good day, easy to feel discouraged on a bad one, stay true to the fight! Quote Link to comment Share on other sites More sharing options...
Help4Me Posted January 8, 2019 Author Report Share Posted January 8, 2019 Yes Scott.....I guess I shouldn't get my hopes up so high when I have the odd few good days.....I am wondering about the link between gut issues and POTS...because almost every person I have talked to has told me that they have severe GI issues.....either the GI issues came along just before the POTS or they started at the same time as the POTS......I know there is a LINK>...and I was just diagnosed with CHRONIC PANCREATITIS....and I have severe GI issues that I have had my whole life...but never as bad as they are now.....I am eating yogurt now every day and it seems to help a little bit......the only thing that makes me feel somewhat well is when I am on antibiotics...and all my gut bacteria are killed off.....I know that is not good long term but I have ongoing intestinal infection which I think is either causing or worsening the POTS>....I have not had chocolate in 6 months.....caffeine makes my heart go bonkers.....I miss my coffee too..... Quote Link to comment Share on other sites More sharing options...
Guest ScottS Posted January 8, 2019 Report Share Posted January 8, 2019 I'm certain there is a link (between POTS and gut issues) too. For me, the problem is slow gut motility. Fortunately for me, having a cup of decaf coffee with a meal helps keep things moving along (if, it sometimes seems, at a snails pace). One thing that also helps me is doing a few, specific YQi exercises just as I'm settling into bed. (I am a life long yoga and YQi practitioner and - for almost as long - instructor.) The exercises I do involve me elevating my legs to 90 degrees (letting gravity assist my system in returning blood to my core and the many organs of filtering/digestion/sex and etc. residing there. I then do a series of foot rolls (rolling my feet via my ankles in both a counter clockwise and clockwise direction) followed by a series of flex and point movements. (Point the toes and then flex the feet back and repeat). I follow this with "happy baby's pose" and then complete the circuit with a simple reclining "cowpers's pose". I am lucky in that my GI issues, at least thus far, have been limited to what havoc POTS causes. I do have one suggestion with respect to gut bacteria. Certain foods (mostly vegetables) provide VERY helpful prebiotics. Prebiotics are non digestible fiber compounds that are fermented by gut microflora as they pass through the small intestine and into the colon. The fermintation process helps feed the probiotic microflora (the friendly bacteria) in the gut. My two favorite prebiotic foods are apples and asparagus. (I eat both daily.) Obviously, eating asparagus and apples hasn't cured my dysautonomia(s), but I can say, with absolute certainty, that paying close attention to what I eat has helped. Quote Link to comment Share on other sites More sharing options...
Help4Me Posted January 9, 2019 Author Report Share Posted January 9, 2019 Scott when did you come down with POTS>....??? did you have any infection or other thing just before you got it ??? I just woke up one morning with it......Yes I have horrible motility issues ....that is why I had to have my large intestine removed....I have an ileostomy and yet my stomach and small intestine still move at a snails pace....I used to drink Coffee and it was so very helpful...but now I can't drink it or I go into a HYPERPOTS attack with high blood pressure and high heart rate that will last for up to 36 hours....and I end up in the ER....no fun at all....I may try decaf coffee on a day when I feel stronger....but not today.......I believe this is all linked together.....I don't know if it is the vagus nerve or some other issue like SIBO infection which messes up the immune system setting the stage for POTS>.....I am determined to get to the bottom of it.....I study all day everyday online trying to put the pieces of this puzzle together.....read literally thousands of stories of people with the same symptoms....some DX with POTS....other DX with MCAD and LYME>....but basically they are all the same symptoms....they are all connected somehow...... Quote Link to comment Share on other sites More sharing options...
Guest ScottS Posted January 9, 2019 Report Share Posted January 9, 2019 I've had POTS almost as long as I can remember. Of course, back when it first hit (pretty much) no one knew anything about it, and if they did it was most often passed off as a "female problem". I was 13 years old and in the 7th grade. I was walking down the hall, during a change in classes when, out of the blue, I passed out, smashing my face against a school locker. I regained consciousness almost immediately, felt my face stinging and, despite my head spinning heard nothing but the sound of (what seemed like) hundreds of kids laughing. Needless to say, it was a rough start to my adolescence! (Note. I'm 61, so I've been through many a POTS and dysautonomia related battle.) My daughter in law has Crohn's and just last year had a portion (I think about 8" in length) of her intestines removed. Her gut motility isn't too slow, it's too fast. Part of her treatment includes regular infusions with a monoclonal antibody. (I can't recall which one.) I know she fears the day when she'll to have an ileostomy. For what it's worth, I feel for you. Quote Link to comment Share on other sites More sharing options...
Pistol Posted January 9, 2019 Report Share Posted January 9, 2019 18 hours ago, Help4Me said: I have several good days in a row and start to feel like I have found a system that is working...ie foods, meds, supplements etc......then I will have some really bad days that put me right back to feel like I am dying again......is this "NORMAL" with POTS> Unfortunately this is the nature of the beast! I have been well for many weeks at times and then - boom - bedridden again. It helps to find your triggers. Last Friday I was feeling very good and went to town for grocery shopping. I usually do not do the check-out line but this time I did and promptly had to sit on the floor until hubby found - and rescued - me. That was it -- in bed since and had to get IV fluids to get better. So - I know the trigger and can avoid it ( most times ) and that is so valuable! But it is not so plain for all of us, especially if foods are the triggers. 16 hours ago, Help4Me said: .I am eating yogurt now every day and it seems to help a little bit......the only thing that makes me feel somewhat well is when I am on antibiotics...and all my gut bacteria are killed off..... This is exactly what happens to my husband - he has had problems with bloating and abdominal pain for years, had all the testing and all is OK … when he is on antibiotics he feels so much better, he took weeks of cipro for an unrelated infection once and flagyl for his gut another time and he was "cured". As soon as he stopped them the problems returned. We believe that he has some sort of overgrowth of organism in his gut, he does feel better since taking pro-and prebiotics. He also gets fungal skin infections at times, so I am wondering if this is related. Have you been tested for SIBO? Quote Link to comment Share on other sites More sharing options...
Help4Me Posted January 12, 2019 Author Report Share Posted January 12, 2019 yes I have SIBO.......I am eating a lot of yogurt now and it seems to be helping with some things...but POTS stuff is still the same.... Quote Link to comment Share on other sites More sharing options...
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