freelemons

That does seem like a really long time, and way too long to be just the sugar. I haven't tried it but dr oz has a recipe that seems like it has the right ingredients: Ingredients 1 liter of water 1/2 tsp of baking soda 2 tbsp of agave nectar 1/2 tbsp of sea salt

I'm wondering if the sugar is what helped (how long did that feeling better feeling last?) since you mentioned it was before lunch. My doc has actually always said that the added sugar messes with the helpfulness of the electrolytes. Depending on what your salt water hydration is, I wonder if something like smart water or even pedialyte would have the same effect. I find that smart water or the traders joes equivalent (way cheaper) helps me, more than regular water. And if it is in fact the sugar that helped, then maybe some of crash is blood sugar related (which, of course, is regulated by the same lunatic nervous system as everything else). Mine certainly is, especially if I'm really busy and forget to snack. Glad to hear things are improving! Good luck with the no-gluten plan!

Thanks everyone for your responses. I finally went to the ER at my doctor's suggestion on Friday and I have high serum lipase levels, which made them think it was pancreatitis. (They were also really worried about my tachycardia, I tried to explain that was normal for me but I don't think they believed me!) Went to a GI on Monday to follow up and they seemed to think I wasn't at high enough levels to have full-on pancreatitis but couldn't figure out why my numbers were high. I tend to agree with you that it is a gastric emptying issue, I actually think my GI symptoms were the first sign of my POTS over 10 years ago but no one really knew what was going on. I was diagnosed with delayed gastric emptying and IBS as a teenager, and then got sick with POTS in college and the stomach symptoms calmed down/I got used to them. I mentioned the gastric emptying and that is what the GI is thinking it will end up being again. It's just never been this extreme for me! I'm getting an endoscopy and then may repeat the gastric emptying study I had 10+ years ago. Has anyone ever had these high lipase levels? That part is still confusing my GI but everything else sure does seem like gastroparesis. And thank you for the dietary suggestions (and the juicer is a great idea, I have been eyeing that anyway!). I think I was just taken aback by the sudden onset after so much time without this particular group of symptoms. Isn't it odd how it seems to shift just when you think it's getting predictable?

I've had stomach/intestinal pain, accompanied by nausea since Sunday, night and day, with no sign of going away. If I try to eat anything it gets worse, and if I drink ridiculous amounts of water it feels a little bit better until the water makes it through my system. My, er, output is less than it seems like it should be but totally normal when it happens. It seems like my GI tract has just stopped contracting properly. I'm worried that even if this is somehow unrelated to the dysautonomia, the amount of physical distress it is causing, my inability to eat, and the resulting lack of sleep is sending me into a flare (I'm already really tachy). I took a benadryl last night because it occurred to me it might be MCAS related--at some point I had been on allergy meds and noticed that my dysautonomia symptoms seemed to have calmed down. My doctor mentioned sort of offhand that that might mean some mast cell involvement. I think it helped my stomach a little but obviously hasn't been a miracle cure. Anyone have any suggestions? Does this sound like it could be MCAS and is there something I could do if it is, short of going back to the doctor, that might help? I'm sort of reaching my wit's end and running out of what energy I had. Any advice would be very much appreciated. Thank you!!

I had all of my wisdom teeth out at once (ugh) after my diagnosis and they didn't want to put me under because of our anesthesia issues and because of all the medications I was on. I would just be careful with what they give you for the procedure. I had a dermatologist recently stick me with local anesthesia without a lot of warning for a biopsy and I think even that caused a flare for me. I would just make sure to ask them about the anesthesia and if you can handle it, go without (I find it actually never works properly on me anyway so I get the double fun of being stuck with needles and still experiencing the full procedure). Good luck!

I would think the psychological part of PTSD triggers a nervous system cascade that results in a number of the symptoms that are so similar to ours. I.e. If you are terrified, you get a massive adrenaline surge. Not to oversimplify PTSD but I would imagine that a lot of the overlap is more about the nervous system's reaction to the memory/psychological trigger. If beta blockers can tamp down some of that nervous system response by slowing heart rate, it makes sense that it would lessen symptoms and maybe also prevent some kind of circuit (when you feel your heart race and other symptoms, you get more anxious which makes it race more, etc.).

My fibromyalgia (diagnosed before dysautonomia) seems to worsen and improve in cycles that are definitely tied in with the rest of my symptoms. I have some motility issues as well and I think that ties in to both too. Like peregrine, I have hypermobility and that is related to both my fibromyalgia and the stomach stuff. None of that really answers your question except to say you're not alone. All over pain may be a variety of things other than fibro though, so I would talk to your doctor about the fibromyalgia points etc.

I have been getting this a lot too, and I realized the nausea and sometimes heart pounding/breathlessness is my blood sugar crashing. I know you mentioned stomach issues so it might not be an easy fix, but I find that if I eat something small close to bedtime I avoid that crash out. That said, the adrenaline sometimes does its thing regardless and I'm up forever. You said you just started exercising. I know everyone has their own view on this, but if you're working on an empty gas tank and hitting the accelerator, could it be asking too much of your body at once? Maybe some non-cardio exercise would be worth a shot? I'm sorry you're dealing with all of this. hang in there.

My doctor recommended "nuun" and I hate flavored water but otherwise it looked promising, they sell it at outdoorsy type stores Ike REI. I also drink smart water but I dont know if I'm just tricking myself into thinking its better than tap water.

Does anyone else notice a pattern that right before they have a crash or flare (for me, it's insurmountable exhaustion, muscle fatigue, etc.), they have a day or two where they are extremely emotionally on edge? I pick (verbal) fights, cry, yell, and generally can't handle any kind of stress. I can't decide whether the tension is what causes the flare or if the acting like a lunatic is already part of the downward spiral. I think I would just feel better if I could recognize that something dysautonomia-related was happening that was making me so...outbursty, and hopefully rein in some of the yelling crying drama as a result. Thanks everyone.

We ask so much of ourselves and the line between acceptance and surrender can feel so thin. Frugalmama is right about grieving and I think the unpredictability makes us ride the emotional rollercoaster over and over. I've had this for 9 years and have been really blessed in that I was able to complete school and work full time. Every improvement makes me think maybe I'm finally "fine" and every setback makes me panic that everything I've worked so hard for is about to fall apart. I don't usually realize how deeply in denial I am until I have a doctors appointment - I usually come in with different symptoms or new ideas and every time I think maybe THIS is the time we will figure it all out, so when I leave I just fall apart. That said, I appreciate the small things more than I ever would have without this. Hang in there. "Life is a shipwreck, but we must not forget to sing in the lifeboats." --Voltaire

I've had that too, mytwogirlsrox. I used to find that my arms would fall asleep if I held them above my head for a few breaths, and a lot of the flow yoga made me lightheaded with the swooping up and down. In my own practice I do much less swooping (not the technical term but I mean the moving from standing up to a forward fold) unless my symptoms are really minor that day. I tend to block my poses by where my head is relative to my heart, and on bad days I don't do much standing work. When I have tons of energy and time (...) i'd really like to try to tailor a yoga routine for us potsies. Also worth looking into pilates - a lot of it is done lying down and it's great for core muscle tone. One more thing - focus on form over "powering through" dvd workouts or whatever else for everyone, but especially us. Pushing your body too hard without control is like driving on the median - you might get where you want to go faster, but your car is gonna be in rough shape by the time you're done. Better to drive at a fast but controllable speed and get there in one piece. Physical stress translates into nervous system meltdown, and until you're so in tune with your body to know what it is and isn't capable of, better to do things deliberately and carefully. And carriejessica is right - better to have a goal of doing something than a goal routine.

Yoga! Like any form of exercise, it's so important to know your body and what you can and can't do. And there are different levels of intensity so as you feel better you can burn hundreds of calories an hour, and on off days you can do something much gentler. For a while I was so low on energy and so deep into my "reserves" of adrenaline that my doctor suggested I not do any exercise that gets my heart rate above 120. When you zoom up to 140 going up one flight of stairs this can be tricky! I did some very basic yoga and focused a lot on my form rather than on cardio. I also recommend yoga because it teaches us to breathe better, which helps to control the effects of surges and gets more oxygen into our blood. I also have fibromyalgia and it improved my pain levels significantly. If you're considering this, I urge you not to just get a DVD at home but try going to a class and speaking to the teacher beforehand about the challenges you face. A teacher worth their salt will not only listen, but help you figure out what you should and should not try. A private lesson is even better but of course that can be $$$. For better or worse, I went through a stubborn phase in which I was determined to get in better shape regardless of how I felt. I probably overdid it with a number of yoga classes before I wised up enough to know what I can and cannot (or should not) do. I ended up doing a teacher training--even though I knew I wouldn't be able to teach, it gave me the knowledge base to have a good and safe practice at home and I had the amazing opportunity to educate some other wannabe teachers about the challenges we face.

Hi everyone, I was just wondering if anyone else has this 2 day lag between flying (exercise sometimes used to do this to me too before I got a better handle on what I was capable of, so I would say major stressors generally) and a complete crash? Often I will take a flight without symptoms, feel tired but not terrible the following day, and then feel like I was hit by a truck the day after that. Anyone have similar lag time or know why this might be? Thanks! L

Hi team, I am having tachycardia (not terribly unusual for me but still not terribly pleasant) and it is affecting my breathing etc. I'm also noticing as I sit here with my trusty bp machine that my bp is rising to very high for me (116/79 which I know is normal for normal people but astronomical for me). I know a lot of us wake up with this, and that's my usual m.o. I'm sure if I got up and went for a run or something it would get way worse but my normal sluggish am routine is plenty adequate to keep it going for at least an hour. Here's the question: which came first, the chicken or the egg? Is my heart attempting to raise my bp, in which case should I help with caffeine or something else, or is this something else and the bp is just a side effect? Just wondering as it seems like a lot of you do better in the morning after coffee or tea. And drinking a latte seems way more enjoyable than having my heart go bananas. I've got dysautonomia and some mast cell involvement, doesn't seem to be very posturally-triggered. Thanks for any and all input!