Sunshinegirl

OK. These sites are useful. Its a good place to start looking into genetic testing now that my blood work all points in this direction. Dizzyallie, will you keep me posted on what you find out next month? This last year has been long and I am tired. My son got a bone infection and had a PICC line to treat with broad spectrum antibiotics. This led to him either getting or flaring for the first time with crohns. He is on enteral nutrition through a GJ tube and went into remission quickly but that is not the "end" of course. It has been a year of reading, studying, advocating, running around, constant care giving. I feel like this situation with me is a bit of an answered prayer of course, but I am already exhausted....spent....I don't know if I can dive in like I did for him and still have to do for him. One good thing is that his needs and mine are not much different as far as eating, rest, stress level, holding on to hope, taking things day by day. I guess my hope is that I can set a great example for him but just getting up everyday with a smile, give hugs and show him how to keep moving. If you stop moving in a forward direction, you quickly slide backwards.

So as far as symptoms go....I know they are in my mothers side of the family but I did not get to know my father. Recently, I got a heart rate watch and have been wildly surprised. I took a few days off of eating "tons" of salt and my resting heart rate went from the 80's to over 100 laying down. Yes, I work out and am slim. So how do these really fit together? I get that it is somehow the ROOT cause...but how does not being able to break down stuff, maybe mast cell and POTS...nerves being ruined...GI total mess work with this gene abnormality? Iv been reading but I don't see the whole picture yet. What I "see" is a bunch of partially broken down proteins and stuff floating around ramming into healthy cells, breaking up the end pieces that allow for DNA to zipper up correctly upon regeneration....thus wreaking havoc. Somehow B6 and folate are able to buffer this process but B12 seems to not be processed. For some reason I feel like I should be an ocean mammal with all the salt and water I need! Ever want to be a whale with a polka dotted tail? And I feel like a rubbery octopus. The pieces are slowly coming together. Long day of testing tomorrow. Thanks

After hearing all of this, I have been crying...from joy, frustration, sadness, ....everything... Sorry, I have been trying to interact but something happened to my account after my computer got a virus. My Hotmail and everything was compromised....so is my ability to use this site for some reason. Taking in all the info and researching...hoping the helpful monitors will figure it out.

I also thought it was very weird that I have way too much B12. I thought it was water soluble and the body would take what it needed and discard the rest....so when my numbers came back high, I thought...how can this be. It must not be processed. So Why then do "they" say that taking B vitamins is protective against the damaging effects? B6 is supposed to be more beneficial...so Iv read. Im really just beginning to start making sense of what I am reading. There is not much variance in the information I can find. I read that not much attention is given to this because there is no pharmaceutical investment in studies. Is that true? What do you use to deal with the symptoms? What is your quality of life? What is your life expected to be like? You don't have to answer these questions if it is too depressing or causes you anxiety.

WOW so weird! Is there anyway you would be able to remember a timeline or any more information. I have a big tests coming up on Thursday and next Monday. I have been chasing this issue for so many years. I also have high good cholesterol...which is weird but I read about something about it not being processed and somehow oxidizing....I could not make sense of it. I have low bad cholesterol. What is your prognosis? What do you do to help your situation? Iv read so many scary things about this situation and I don't know what to believe. I did not know it was so prevalent. I have not had gene testing yet but if I am armed with good info, I can request it and get it.

Anyone have this with normal to high B12 and otherwise normal blood levels involving cardiovascular issues? How if at all is it related to the big picture of POTS? All I could find was info about IBD, GI issues, heart rate issues and peripheral nerve issues....all of which I have but I don't have heart disease or any other signs of it and am not malnourished or taking medication. I do have very stretchy ligaments and skin. Has anyone figured out how this may or may not play a role? Thanks

I would not get a puppy per se...if you can find a "teenage" dog that is not a messy breed. A mix of poodle does not really shed and they tend to be small enough to be comforting lap dogs. Some people want "pure bred" but they usually have more health problems due to inbreeding than a one generation "mutt". Mutts I have had almost never go to the vet except for regular check ups and shots. If your looking for a therapy kind of dog, the Lab is the best. They are easy to train as pups and very teachable. You could easily work with one and get it certified as a therapy dog who could go places with you and support your weight if you become dizzy or sick in public. People are not afraid of them. German Shepards are better at this but they are large and make more mess and people are afraid of them. Labs shed 2X per year but every German Shepard I met sheds on me constantly and they smell just a bit more. I have a super aversion to smells so this is why I pick a poodle mutt over a pure breed. A labradoodle might be a perfect match.Good health, smart, not stinky or droooly, small enough to get out a dog door to take care of business, trainable. The other thing to think about is picking a sex. The females tend to be more calm and you would want to get her fixed right away so there are no adverse behaviors. I suggest calling a therapy dog place and asking some key questions. they will charge you thousands for one of their dogs but you don't have to get one from them. A dog has to pass a 12 point behavior test to become a certified therapy dog. A vet can give the dog the test. You just have to be committed to the process for a good 6 months after puppyhood if you picked a smart one. ...if that is what you are looking for. I have a cat that acts like a dog for now because my son is allergic to dogs. He plays fetch and everything!

Also for breakfast I began eating sweet potato with a bit of smart balance and a ton of salt. That decreased the bloat and loss of water and salt because it keeps it in the fiber and releases it more slowly. Its healthy and full of fiber. Also, old fashion Irish or steel cut oatmeal can be made with a bit of smart balance and a good dash of salt and still taste good an hearty. Keeps you full without being over full and sick. The bit of good oils seems to be essential to staying satiated on a small meal. Grits works the same but digests too quickly for those who usually have the runs. It is not as heart healthy either. Sometimes adding psyllium husk on a "runny" day seems to keep things in longer and come out better.

I use zipfizz or its off shoot called eco drink. They are sold cheaper at Coscto, BJ's and Sams in bulk. they are full of electrolytes and vitamins. They have natural color and flavor and just a few calories without artificial sweetener. I cannot do phen's such as aspartame. Sucralose or Splenda is OK. The others give me pop fizzys in my head that are like awake seizures. Also the artificial color makes my heart race and gives me the runs. Additives can be worse than food. In a pinch try a V8 or v8 splash. I carry those with me all the time. They have salt and valuable nutrients with a low calorie count. I could not survive off of less than 3 or 4 liters a day. I also eat pickels and drink pickle juice...the natural kind with no colors or preservatives. The pickles take time to digest and seem to release the salt more slowly. Also, they don't have any real calories to speak of. I get tired of pickles but I remind myself that it is just a pickle and not a chemo pill. Perspective....its a good thing. hope that helps

I was told to drink 3 liters but I find that I need more than that. I do get bloated sometimes but at the rate I sweat I can wake up in the morning totally dehydrated. I drink over a liter during the night. My car is loaded with water bottles and the side of my bed gets littered with them every day. I am adverse to the coloring in gatoraid so I use a powder that is all natural. I think you have to just pay attention to how much water you are loosing and drink accordingly. Check the color of your urine. That will tell you how hydrated you are. Some people only think to drink more when it is hot. In the winter, the dry air is nearly as bad as the sun! Also, I think 64 oz is what is recommended for people without this condition. It would make sense that this is a minimal amount.

I got this new watch that is meant for exercise training but Iv been using it to track my heart rate in different circumstances. Its called the Polar FT7. It was the most accurate as far as reviews go. The monitor is a small belt around the ribs that syncs with the watch. When I start feeling very poor, I put on a training "session" to record what goes on. Then I can up load it to a program on my computer. I am doing all of this as a way to collect data and experiment. For me, my high heart rate is the second most troubling symptom. I'm trying to see if there is a correlation between my heart rate and other symptoms such as sweating all night, feelings of doom, position, eating..and so on. So far, I have found that if I exercise and let my heart rate stay above 150 for too long, I will create a problem for myself. Its like I get too much adrenalin and cant get rid of it. I feel "spiked" for the next 12 or more hours. This leads into the next day where I am too tired to do anything and bloating. It also seems that as the years have passed my heart rate has changed to always being on high. Interestingly, I am less dizzy than I used to be. The only thing I can think of is that my heart is over compensating. Id almost rather be dizzy all the time than live with the feeling of being strung out like a high wire. Has anyone found other ways to measure and document that reveals good information? How do you track things? Anyone else have a constant high heart rate...like 130 + just for standing? I feel allergic to living because I constantly have a visceral response to just about everything.

I had terrible POTS as a child... they did not know what it was but in hindsight, it has all become very clear. I did pretty well for a while but it was never fully gone. After sustaining a head and neck injury, it was back full blown. Pregnancy changed things twice...I think because mine is related to immune issues. The "pain cycle" seems to be HUGE for me. If I can get the pain to stop cycling, my body produces less stress chemicals, my heart gets a break, and things flow better back up to my head. That's the "science" of it in lay persons terms. Im sure others could more adequate labels on it without having to do more research. Hope that helps

Wow that's a lot of good info. I am not as far along in my testing as you all are but mine is believed to be connected to mast cell and hypermobility/ genetic issues. I have tried a mostly low histamine diet and that seems to help some. Some weeks I just drink hypoallergenic protein drinks and salt. Thankfully, I don't really care much about food! To me it has become a necessary evil that results in pain. I like the idea of improving small bits here and there. I do love to collect and hoard data....its the only thing that got Drs. to take me seriously! Im not going to stop now. So far, the best thing I have done for myself is stop working or trying to and ridding my life of toxic people. I don't answer my phone very often. I am tired of trying to explain myself or make a lame excuse as to why Im not going far from my potty today. I also remember being in the hospital and feeling like..the best ever! It was a combination of the salt and the leg squeezers. I looked into buying the squeezers for night time use but they are very expensive. Still waiting on my new petite stockings to arrive. I spent months wearing ones that were too long and suffering.

Yes. I have rapid emptying and take vitamins in liquid form. Monitor my uptake by the health of my skin and nails. Iv been to GI and all they had to say was it was the worst case of IBS ever and did I want to join a study. Have tried GI meds but none seem to work. Have not tried florinef but will hopefully get it soon. I eat salt but it doesn't work. I also tend to bloat very bad in my abdomen after exerting myself physically and also like you, when I get stressed. I too cannot be out for long in environments that are over stimulating. I get very sweaty, dizzy and sometimes have to abandon my cart! Do you ever have a problem with bloating? My guts make noise all the time and I sometimes look like Im suddenly 7 months pregnant. It is very uncomfortable and increases distress...like a bad symptom loop. What works for bloating? Iv tried tight waist bands along with stockings.They are hard to sleep in. Im not sure it is even safe or if it could cause clots or something.

I sweat the bed all the time. It also happens during the day. I found it gets better if I sleep nearly sitting up. It is very disturbing. I also notice that my heart rate is very high for no reason and nothing I can do will bring it down. I also sweat out of my shoes even when it is 30 degrees outside. Weird. Wearing socks does not make it better. These problems have been going on since I was young. Its not hormone related. Sometimes I just RADIATE heat from my abdomen and this is usually accompanied by a terrible pain in my back...but no other symptoms of infection....just thirsty

Does anyone else get very bad diarrhea from trying to get enough salt and water? This has plagued me for a decade! When I am out and about, I always have to use the bathroom urgently and don't always get there in time. I look fine but life is not fine! It gets worse with even a little stress or heat. I don't think the salt and water are absorbing correctly. Recently, I was told to try eating pickles. It helped a bit because they retain the salt and let it out as they digest. I can only eat so many pickles! The thought of soup disgusts me. Nothing sounds edible. Salt tablets don't work. Do they make slow release salt tabs? Any suggestions?

I cant always figure out what makes my heart race! When I have had days of adequate salt and water without diarrhea, I don't notice much of a change...until later.... On these days I usually over work myself and clean everything. By the end of the day, I am miserable with a racing heart and sweating while sleeping. The only think that helps is to raise the head of my bed more and try to bear down holding my breath. Not exercising for a while will also more problems than getting a bit of exercise every day. The hard part is knowing when to stop.

In my car: Many bottles of water, salt tabs, powdered electrolyte to add to the water, protein bars, chap stick, lotion, some other medication, bengay, paper bag, plastic bag, extra clothes, wet wipes, sun glasses husbands cell phone number taped to my console to call. I get hot and sweaty so in the summer I have a cooler of Ice and salt to add to it, ice packs, extra socks, Some years I have to bring paper underwear for uncontrollable GI issues. (Need I say more?) At work, I have all of these things depending on the season or indoor conditions.

I was prescribed 40/50 but am allergic to latex so I had to go with 30/40. I am short so the first pair I had did work wonders but kept sagging and pinching. I ordered a pair for short people without a toe. My neurologist said that my knee highs were not adequate for me, nor could they really control POTS. He insisted that I wear stockings....and he was right. (dang it) Getting them on is hard but I have found tricks. They MUST fit correctly or you will be miserable. If they fit correctly, I have found that I feel WAAAAAYYYY better and it is worth the squeeze. I keep telling myself...at least I don't have a port for chemo...it keeps my perspective in check.

This might be very relevant for those who have Mast Cell issues. I could go on for hours about this! The connection between the gut, brain, autoimmune, hormones, chemistry and nervous system ...is amazingly complex! I have done hundreds of hours of research on this topic in relation to my son with Crohns and for myself. He was successfully in clinical remission in 2.5 months on enteral nutrition and gut flora replacement and has no adverse side effects that are caused by the typical treatments. If you are interested, I can post a bunch of links to videos that explain in depth. It beats reading the entire GI medical library! I am not a physician...just an information hog. If you have a question, I can find a reference from a published article that answers your question. Its encouraging when we can start to put the not so obvious pieces together and develop a working theory or at least a new idea to contemplate.

I can only tell you from my experience. I had it very bad as a child, it got a bit better as I got older then when I after I gave birth it came back with a vengeance similar to when I was a child. It has been a bit better with treatment over the years. I think it really depends on what is causing it. Mine involves many systems of the body so I think that is why it gets worse when there are major bodily changes. Also, the ability to listen to your body and take care of yourself...self awareness and a sense of conservation is not natural to a young person. This comes with time and wisdom...from learning the hard way too many times. Hope that helps

This is something I deal with all the time. Long before the new programs, I bought colored films to put on my computer screens. I like the blue, yellow and pink, better than the other colors. Or I wear shades when looking at back lit things. I get super dizzy in the theater so I wait for the move to come out on DVD and just close my eyes when its swirly or flashy. I carry sun glasses and a visor most everywhere because of the flickering lights. My house is sun lit or lit with lamps at night. Can anyone else see the pulses and hear the buzzing of the lights? Just this alone ***** the energy right out of me. I cannot carry on a conversation! My eyes start twitching and have sharp pains. I got prescription ear bud/plugs to drown out the noise. I was told that I have hypercusis. I am also bothered by the high pitch sound my computer fan makes. My old one was very bad because it also vibrated and put out heat. My hands would swell and start dripping sweat! I got a smaller one and it is 50% better.

I found a great neurologist recently who told me to tread water for 5 hours a week. At first I thought " what???" I did what I was told but the amount of exercise wiped me out and that's all I could do in a day. I dialed it back some so I would have energy to clean. Now I am doing a mix of recumbent bike and treading water partly because I kept getting ear infections from the pool water despite wearing ear plugs. Additionally, the chlorine in the pool sent my nerves off and I felt like I was on fire the rest of the night. To combat that, I covered myself in petroleum jelly because it does not dissolve in water and creates a barrier for my skin against the chemicals. I found that the shooting pains in my legs, swelling and heart rate all decreased quite quickly but the act of exercising in the evening kept me awake all night. Why? Im guessing adrenaline overload. Back to other recommendations I was given. The Dr. Told me not to put my hands above my head when using equipment. He said to start slow even though I am accustomed to working out. He said not to do so much that I feel pain or muscle fatigue (build up of lactic acid) because my body wont get rid of it normally and it will discourage me. The pain cycle will start and not stop. With that said, I make a point of getting to the gym or doing isometrics at home every day and listening to my body. At the first sign of over exertion, I stop even if it is just a few moments. I don't let guilt get in my way. Last night I was doing the bike and talking to the lady next to me. I started seeing spots so I had to stop talking and listen to her, consciously breath more and bear down on my abdomen to try to regulate my blood pressure upward. When I began to breath too deeply and fast my mouth area began to numb. That was my cue to stop or faint! I was a yoga instructor for many years...so you might imagine how hard this is for me. When I taught, most of my class was sitting or standing poses. During the laydown to sitting up poses, I just talked the students through it but did not do them myself. This is my experience Namaste