sue1234

Fasting is not easy, but not impossible. The article mentioned fasting for 72-hours, which I have done 3 times over the last 5 years. Each time I was in the hospital for a 72-hour fast to see if they could rule out an insulinoma. The first fast gave me the clearest thinking I've had in a long time! The next two fasts were rougher on me, but I must admit the first 24 hours are the hardest, then much easier for the next 2 days. My first thought is, fasting gives your body a rest from the onslaught of potential allergens. We know that the first line of defense from outside pathogens and allergens is in our intestinal system(well, besides the skin). What if not putting anything there lets it calm down? If that is what is happening, it makes me think of two things: 1. Someone is regularly consuming something that causes a low-level allergy for them (not an IgE reaction) 2. The gut itself is not impervious to foreign material as it should be(the tight junctions are not closed), and needs to heal up. Maybe I'm making it too simplistic.

Thanks! I also just found out I have Lyme(babesia) and reactivated EBV. No fun!! I haven't begun treatment yet, but hope to see some improvement. It seems all that just compounds the normal changes from pregnancy. I truly hope it resolves some soon!

Since you know your adrenals are shot, do you think the stress of pregnancy would necessitate a higher dose of your Cortef(or Prednisone?)? Just a thought. Question. Can you explain your Lyme diagnosis and cytokines from labs? I just got worked up for Lyme last month, and will find out results later today. I also have the vasodilation really bad, and just curious what labs of cytokines showed up for you. So hope you feel better soon!!

I thought this article was really interesting, in relation to the patient having hyperPOTS. I have it, also, so can relate. I think I'm going to ask my doctor if I can try Losartan. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4142820/ I have not specifically looked at my body(skin) while I get in my worst "flares", but next time I will have to. Everything he explained about blood flow when upright makes a lot of sense in what probably happens to me, in the fact that my hands and feet swell due to venodilation and constriction of the arteries. I would LOVE to have that stopped! I also have Raynauds during any temps below 70F, and suppose that is linked as well.

I have had increasing morning blood cortisol levels. This year I finally tipped over the top of the range, and it is considered "high". No one has explained why it is like that. I've done a few 24 hour urine cortisol measurements, and weirdly, they are usually in the lower 25% normal range. So, who knows what is going on!

And what happened to you is exactly why I haven't walked around stores in 8 years. I get that feeling if I am upright too long. This is what I think happens to me, which may or may not have happened with you.(I have hyperPOTS): I'm upright, everything is ok for a little while. The blood begins to pool in my extremities, not a whole lot, but enough. Less blood is going through my heart and reaching the brain. The receptors notice the lowering in blood pressure due to the lessened volume. The body sends out adrenaline to cause vasoconstriction to get more blood flow. The adrenaline causes and increase in blood pressure AND palpitations. You feel really weird and BAD, and get short of breath. So, the higher blood pressure, for me, is due to the physiological response to the adrenaline. All that adrenaline, besides the physical response, causes a mental response of being in a heightened alert situation, or better known as, anxiety . I cannot stand all of these symptoms, because it takes hours and hours to recuperate back to my "normal". That is the whole reason I don't go shopping!

Corina, yes, knowing that you cannot think up to your educational level is what gets me, too. I used to have an expanded vocabulary, and now just seem to write simple sentences.

Oh, you were good. I could never have remembered near that many names back in my normal days! But I hear you on wondering about pre-Alzheimers. I have two copper gene SNPs that predispose someone to Alzheimers. I found them when searching through my 23andme data for Wilson's disease genes. I do not have the genes for Wilson's, but those two SNPs show that I tend to have a tendency toward high free copper. So, I ordered my own copper blood tests, and low and behold, I had high free copper! 2 out of 3 times tested! But what do you do? I brought it up to my GP, but he kind of pushed the topic to the side, so as to not address it. To be fair to him, I casually mentioned it and did NOT disclose that I had self-tested. I don't have any family history of Alzheimers, so don't REALLY think that's why my memory is so bad...just think it is like you said, a cerebral perfusion issue in general. Did you run your genome?

That's nice(for me) to know that someone else experienced this. I was beginning to wonder if I was getting something unrelated to POTS. Ugh, I hate spending my life with my brain power on like 70%! If I have to have a POTS body, at least I would like a nicely functioning brain!

I'm getting a little worried. In the last few months when I am typing on my computer, I will occasionally type a word with all the correct letters, but in the wrong order. I mean, everytime I might type something on a forum, I most likely will do this at least once. When I do this, I am typing fairly quickly, so it amazes me how I can spell it correctly with all the correct letters, just in the wrong order. I realize it is wrong immediately after I type it, so just back up and correct it. Does anybody have any idea what it might be called or what medical terms I can look up to kind of get an idea what's going on? I've read about dyslexia, but that is more in the reading/comprehension of words, and that's not my problem. I also read about dysphasia, and it's common types, but those are more verbal issues, or jumbled words that aren't spelled correctly. So, I don't really know what my issue is and want to read something up on it.

Yogini, I just thought of that today, that I would try compression knee-hi's. I absolutely cannot handle waist high compression, because anything that even begins to compress my abdomen makes me short of breath. But, I could cut my old waist-high ones down to calf-high.

Thanks for the information. I will look them up.

I kind of have had odd pains in my feet before this, unrelated to swelling. It was almost like tendons would get out of place for a few hours or a day, and in an instant, the pain would disappear. It would come on that fast and leave that fast. I feel like my feet muscles in general are just "out of shape" in holding my body weight up, since it hasn't been doing much of that for 8 years. Maybe my feet have to get in shape?!

barb, I have a history of getting the really hot feet and hands, especially in the heat, also. So annoying! Katy, I've never had dependent swelling. You know how (normal)people say their feet hurt from being on them all day, or even people mention feet swelling in general? I always just assumed it would be an aching-type pain. What I get is sharp pain that makes me haul out the crutches. Do you know what kind of pain is normal for swelling? It sounds like a good idea for me to have the veins checked out.

It is like a cruel joke or something. In the last couple of days I have been upright, on my feet, for about 1 1/2 hours. This is the longest upright time I have had since Pots hit 8 years ago. I actually have to sit, not be cause of being lightheadedness, but my right foot ends up feeling like I have broken a bone or something! It actually looks swollen and the skin is shiny. I went to bed and got up just fine this morning. So, I go a stand up again for maybe just one hour, and once again, horrendous pain and moderate swelling in my right ankle. Any ideas? If fluid was defying gravity, wouldn't both feet be swollen? I have actually had broken bones and this hurt that bad. Like I said, it's a cruel joke that I can finally stand a good amount of time, but now have to quit.

Sarah, no, I have not tested for mast cell. I tried antihistamines a couple of years ago to see if I would get any benefit and I did not. I tried a few different kinds, and actually, it almost seemed to make me feel worse. I get really hot in the middle of the night, also. It is like I cover up from the cool air temps, but after a few hours of body heat circulating, I then cannot regulate that so get too warm/hot. Back and forth all night. Artluvr, I know exactly what you're talking about regarding chilblains. No fun to have these severe reactions. Gjensen, definitley having to keep a tighter comfort zone. I also used to be able to handle 98F summers with no problem, but not any more. When I think about the itching thing when I get hot, it makes me think of when people are diagnosed with polycythemia(too many red blood cells). One of their symptoms is severe itching, especially on the lower legs, after a hot shower. For them, it is due to the many RBCs that have to travel through the tiny capillaries, and it makes me wonder if somehow due to the "pressure" on the area, it must be releasing histamine. That kind of sounds like what could be happening in some of our POTS. They have too many RBCs in their blood volume, leaving less "room" for plasma. We have too little blood volume, but is it with both RBCs and plasma? Does the ratio stay corrected when in low volume? If not, then we may have a false RBC elevation which could do the same thing as the polycythemia people. Possibly. Makes you wonder if polycythemia people don't really have too many RBCs, but not holding onto fluids in general, thus somewhat dehydrated like some of us. Oh well, just thinking out loud.

I have known for a few years that heat is my enemy. But last winter I got a small dose of finding cold was becoming my enemy, too. Well, we got our first cold snap here, and on day one I am already fighting the temp in my house! Here is what happens to me in hot/cold: Above 80F: -My hands begin to swell and turn beet red; fingernails are red -I begin to itch on my back,then it spreads like wildfire across my upper body -I get mentally dull, and get to the point that I feel like I'm going to faint -I quickly turn a/c down Below 71F: -My hands get real cold, and fingers turn white; fingernails are blue -I reach a point that I feel like I'm going to faint, and find I get mentally anxious -I quickly turn heater up Does anyone else get like this??? I understand that in the heat, I am vasodilating. And in the cold, I am vasoconstricting. Both definitely must be doing that in my head, too, with the feeling of faintness. When I am at the extreme reaction phase of both heat and cold exposure(for me), it is scary! Any thoughts on how to control this(other than control my environment/clothing---that's a given)? I didn't think there were many options, but if anyone knows of meds that work, please let me know. I just didn't think there was, as the meds would have to have opposite actions, which doesn't make sense!

A couple of months ago I had to be admitted to do a 72-hour fast to check on my chronic hypoglycemia issues. I've done it twice before. The first time I left the hospital somewhat weak, but almost euphoric. The drew a couple of tubes of initial labs, and then a couple of tubes once daily. The protocol is really the finger sticks every 4 hours until the glucose gets below 50(I think), and then every hour or so until almost 40, then every 30 minutes. I felt the fast "cleared my brain". The second fast they did a few initial tubes of blood, and then all finger sticks, even the last 24 hours almost every 15-30 minutes. This last fast, my doctor was REALLY willing and on the ball, trying to get to the bottom of my hypoglycemia, so tested aggressively so we would have a complete picture. I had the initial labs, but it was around 12 tubes of blood. Then I had the finger sticks, along with 4 tubes of blood drawn every 4 hours! If I counted that correctly(overnight before admission does not count), that amounts to about 72 tubes of blood! Yea, in theory, it may not even add up to quite a pint of blood, but boy did my body miss it!!! I now know why I would never be able to give blood. My normal POTSie heart rate is roughly 75 sitting, and maybe 95-100 while I'm able to be up before my body goes crazy(I then sit). Well, when I left the hospital, my sitting heart rate was around 110, I had anxiety, and I felt like I was going to die if I just had to be up going to the bathroom or shower. I ended up taking an old beta blocker that I had on hand, and it controlled my heart rate pretty good for almost a week. I then felt like my heart wasn't as tachycardic. I took some OTC iron for a few weeks and ate a ton of beef to help the iron situation. It took about a month to almost feel my "normal" again. So, for me, having IV fluids didn't help my situation. It came down to just plain probably being anemic(for me) from all the blood draws. I have no clue if I was clinically anemic at the time, but it was more than my POTSie body could handle. It was lacking oxygen apparently, because I was right back drinking my normal fluid amounts. I guess what I'm trying to say is, if there are any POTSie out there who may have never had their iron levels looked at in depth, make sure you do. It temporarily made me have a triple amount of POTS issues! Oh, and by the way, my glucose got down to 46 and I had loooow insulin, so FINALLY an insulinoma has been ruled out. (My last fast I got down to 41 and the doctor did not have any orders to draw insulin levels until below 40, so we still did not have any definitive answer!)

lfreem02, no, I don't get any infections(yet! knock on wood!). If my bladder gets over-full, I get tachycardia and the anxiety that goes with it. If I run and go to the bathroom, that feeling immediately goes away after I empty my bladder. When you mentioned your hands, that reminded me of my issue with tachycardia. I will let y'all know what my gyn has to say. I have just figured it had to do with sympathetic/parasympathetic system problems, but I just want to make sure it isn't related to pelvic floor issues. I've even wondered about spinal issues, but I don't feel like going through the whole neuro/MRI thing just yet.

Friedbrain, I am very similar. Late evening and nighttime urination is the worst. I also have mostly lost the sense of needing to urinate unless my bladder is really, really full. I find myself sometimes wondering if I need to pee before I get out of my chair, and I will literally push on my lower abdomen to see if I "feel" like I need to go! All this at home, of course, not in public! I am just waiting for the day that I won't be able to urinate enough, and have to run to an urgent care. I have a gyn appt. coming up in a few weeks, so I'll ask my doctor if she has any ideas on why I'm getting like this.

lfreem02, doesn't carnitine come mostly from meat sources? So I would think that could explain the deficiency. Anyone feel free to correct me, as I'm just going off the top of my head here. Friedbrain, may I ask what your bladder issues are? I have been having trouble in the last six months. Basically, I have to really concentrate to begin urinating, and then it wants to stop often, then I have to reconcentrate to start it back up, etc. It can take me up to 2 minutes sitting to finally feel like I am done, instead of maybe 30 seconds like my old normal.

You know, I had a "touch" of mitral valve prolapse, heard by a couple of physicians, back when I first began with POTS. It actually disappeared and I think it is because now I hydrate much better. I think being low on fluid, for me, is what made it "active". I haven't had a doctor mention MVP in years through listening to heart sounds or imaging since then.

Wow, Liz! Sorry to hear that! I'll be sending healing thoughts your way, too.

What an awesome story!! Thanks so much for telling us about your improvements and achievements.

Not sure if it can build up. Excess signs might be weight gain, higher blood sugar, higher blood pressure, higher sodium levels with lower potassium levels.