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The few family docs that know about Dys have a barely functional comprehension of it. My own did a pulse check laying, standing and said "youre good to go". LOL, later I had a cardiac event with wildly fluctuating Bp and PVC's, and before then a very low pulse rate that required ER work. So when they say "i know pots" they may very well mean "im aware of heartrates going up and down" and thats about it. Theyre NOT experts or specialists. And they could no more "treat" you correctly than throw a 100 mph fastball.

It was probably the most effective treatment for YOU, and it certainly will help others prevent pooling alongside hydration, needed meds, and individualized help such as sleep apnea cpap for others. The problem is, like MS patients, a lot of people here no matter how young simply dont have the strength to do "strenuous" excercise like jogging. Im on the older end, 52, but I was an athlete all my life before the "SUDDEN" onset. Believe me, theres nothing id like more than to be able to jog, but the complications that can arise from palpitations is scary not to mention potentially dangerous. Each case to me is different. My base excercise is a consistent movement in a swimming pool or a 1 hour walk at a medium pace when im able. Sometimes I have to bring a bicycle along to lean on, but especially because i always walk uphill in case i run into palpitations or extreme weakness and have to get back to the car/house. This is a MAJOR issue for a lot of us. Imagine jogging 3 miles from the house only to suffer some kind of meltdown and being stuck and unable to move! Or worse, having been to the ER multiple times and having limited insurance! Theres also the possibility that, as a young person, your pots simply got better with time. Strengthening your body helped, but Im not sure ive read that theres proof that excercise healed you. Either way, its extremely good news that you have your life back.

Its hard for us to remember that even though they know we are "sick" they have no conception of what thats really like. And its hard to admit, but people are busy with their own live and expectations, and mostly think of themselves 90 percent of the time. In my case,, a friend of mine went through a divorce. I had little sympathy for him, but when I myself underwent a broken romance in my younger days it nearly was the end of me. I got so depressed that I would literally break down ---as a grown man. Only then could I comprehend what this friend had gone through and it made me feel really judgemental for a long time.

hope youre feeling better soon. Ive never dealt with severe mold allergies, so im lucky, at least in that area. I have to admit this time of year makes me personally celebrate the end of summer. Just being rid of that ridiculous sauna bath makes me feel almost human. I can walk, work, think, and get around 100 times better. Its the same when i swim in a cool pool in summer. Its like i dont have Pots anymore, at least for that hour. Its my favorite time of day. I dread April 1, because down here it can start the beginning of 5 months of agony.

Getting unsolicited advice is INFURIATING, but not just in the medical arena. I try to never give advice unless asked, and even then with hesitation because people dont take it anyway. People tend to blurt out emotions rather than facts. My own sister is a health professional and told a large group of people how "impatient" I am when I went to mayo clinic last year. This was after being sick for six months and unable to work! I guarantee you, until it happens to them, they have all kinds of opinions based on ignorance. My technique for dealing with this advice is probably not textbook. Sometimes I'll even say "what is your own personal definition of dysautonomia? Stunned, they confess they have no idea what it is. The obvious implication is that it is essentially impossible to give commentary based upon admitted ignorance.

This is the really scary and depressing part of pots that i choose not to think much about. I have an o2 concentrator that i frequently use to oxygenate myself. i can only hope that helps.

This may be unrelated but i think that it was a pulled tooth instead of opting for a root canal that may have set my POTS into motion. I also had a tetanus shot before that time. I think most of us would be amazed to find out exactly how we contracted it, it would solve a lot of puzzles.

anytime blood pooling or chemical release things are going on, it must be natural to get dizzy. Add to that list digestion issues or BP changes and we have to be really careful. Even taking showers can be dangerous. Ive never fainted but the danger in that is hitting your head more than passing out.

Thanks, I'll have to study that out more. My own sweat patterns seem to have obviously changed since POTS but I also avoid getting into the situation of being overheated. I seem to either flare up and go into a profuse "cold sweat" at my core (abdomen) or i simply dont sweat at all. Im like a thermostat on a car, on or off. The one time I think i experienced what you describe as blood rushing to my sweat glands, i was in the garage changing a tire but in the heat of the day, 95, but out of the sun. I got the lug nuts off, but my body gave me that familiar warning that I was about to have a meltdown---you all know the drill. I put the lug nuts back on, and got back in the AC and straight into the shower. I felt VERY shaky in there. Im always afraid of fainting or falling in there, and i keep the water cool, not hot. Then straight into bed after popping a klonapin. My entire body was unable to cool itself, and as you say all the other organs reacted accordingly. Adrenaline, histamine, increased heart rates are normal things in their proper contexts but our bodies cooling mechanisms simply dont work anymore.

Can you explain vasodilation as far as what your various body systems do when that happens? It makes sense that your heart would spike, and if theres histamine, adrenaline or shock involved you'd start having breathing problems which would spike your heart even more and make you weak real fast. Im from cleveland, not far from canada. Id honestly trade that, but now were heading into about six or seven months of fairly moderate so no big problems. But around april 1 i start to literally get very nervous for the prospect of just making it through summer. Those with POTS know thats all you can do. I wonder if anyones ever moved north to escape the swamps.

We live in South Carolina, it hits 95 and above for a couple months straight during the summer. Its also very humid. I always hated extreme heat being from Ohio but these days I can barely even function outside. I mow the lawn in two consecutive days after the sun goes down. Ive read a lot about heat intolerance, but havn't really heard a medical explanation for it. For me, its like im stuck in a sauna breathing through a straw. My face flushes, lymph nodes clinch up, and my tachy starts wildly out of control. Im dreading the day i ever get a flat tire in it on the highway when its almost 100, because unless I got into a cool environment, id probably end up in the ER. Anybody have any links to scientic explanations? Or some theory? Or at least does it start as a respiratory problem, BP problem, hypothalmus problem, or even some kind of shock problem? If I had my way, I'd live way up in Vermont on Lake Champlain. Family ties here.

I've had candida and treated it but found most of my symptoms were from food intolerances not candida....::""""" But what caused the underlying initial problem? Its the same stone age medical procedure. Treat the symptom instead of finding the root cause. It would be like treating POTS with drinking lots of water and saying youre cured. It simply helps with the symptoms.

-either wake up at 2 am with sleep disorder problems or 7 am feeling "okay" but agitated. Frequently use part of a klonapin dose to feel functional. Ocasionally feel so awful that I use my 02 machine for 20 minutes to feel strong enough to start the day. -try to eat a health breakfast avoiding any food triggers. Oatmeal, eggs, cereal with silk. No dairy. NO coffee which I crave every day. -Have trouble getting everything together. Mental fog. Usually leave the house forgetting something i need. Stay busy for about 5 hours which is my usual functioning time before i crash. Maybe grab a nap late afternoon. -Get up and try to get more done. Pace myself depending on how demanding the task is. Organization is the key to it all. I have to plod along now, but i used to feel like superman. -do my pool workout at dinnertime. Its my best time of day. I forget i have POTS. Weightlessness makes me feel like im 15 again. Endorphins flood my body. -eat dinner around 7. Usually eat too much for a POTS person. Havnt mastered the whole eat 7 small meals a day thing. Avoid chocolate and caffeine. Never drink alcohol anymore. Never eat MSG or aspartame. -read before bed, strap my cpap hose on, and drift off hoping and begging i dont have a bad night and can wake up feeling ok.

Most doctors sneer when you mention it. They view it as quackery. Just more prejuidice on their part. Ive always suspected POTS, leaky gut, bacterial/viral infections, deficiencies, sleep disorders, and stress all play a synergistic role in getting sick. Combine enough of those things, and youre going to get sick, and the symptoms overlap so its almost impossible to figure out the initial underlying cause. It would also explain why there are so many varying chemical helps and lifestyle management techniques. In my limited two years with this, I would humbly say that its a serious mistake to assume you only have one condition causing all your problems. Leaky gut can wreak all the havoc POTS can. I once heard a quote: a food allergy can mimic ANY sickness in the human body

Thats for sure......well, I assume all of us take our physicians expertise with a grain of salt. They have plenty of ivory tower opnions, but until you know what POTS feels like, youre at a serious disadvantage to treat it. The Dr. in Pensacola with POTS is probably more sympathetic with the varying unexplained treatments that work without being able to explain exactly why

yeh, the walking "gait" is a hallmark of POTS, but also in MS, parkinsons, etc. The gait problems come from balance issues in the CNS. I have a type of spinning vertigo which is annoying, I cant play tennis anymore. Elevating my head while sleeping, using 02, and avoiding processed chemicals and caffeine helps. Good luck

Once again, to belabor the point, im not advocating any particular doctor, and im NOT a patient of cheney, nor do i think he specializes in POTS. The point is that all of us find individualized help with various lifestyle and pinpointed drug combinations and that Cheneys work revolved around histamine blockers, which is discussed at great length here. In the end, since we're not giving medical advice, we're each simply relating our own story of things that work for us, and us only, and that trio of meds helped ME. To argue against it would be me like me saying whatever youre using cant possibly be helping you with your pots since I just happen to know more than you do which would be ridiculous.

at first sob, but cpap is helping that alongside klonopin. Now, definitely WEAKNESS (as opposed to fatigue). I dont feel sleepy usually, but when i get moving to get things done Im moving at 1/5 my old speed because my tachy/flushing kicks in and i feel like im walking in cement.

wow breth, you truly have a full time job just managing your symptoms. People who dont know us have no idea how mentally exhausting keeping track of everything is. I definitely believe that its the mental stress that is the worst---having to micromanage every hour of your life. Issie, you nailed it. Where OSA and POTS come together, what causes what, is almost impossible to determine. I was convinced for a long time that apnea was causing all my problems because OSA was diagnosed first. I was in denial. I still have no idea what causes what. For all I know OSA caused my pots rather than the dental work I had done that i tell people about. I was in pretty bad shape there for awhile, theres nothing less fun that waking up at 2 am feeling like youre breathing through a straw and that somebody injected toxic sludge into your veins. When i was at mayo jacksonville 1.5 years ago I was practically suicidal because i felt so terrible. Not that i wanted to die, but i could barely stand living. Here's the stupid part: i was eating my usual cheerios and milk every morning and going over there for tests, not knowing the milk was sending me into orbit. Amazing to think how ignorant i was back then, its been a crash medical course since then. And as far as cheney, im not a big fan or anything. I just think his research is interesting. I've found that drug trio combination to be helpful, but its a crapshoot whether it would help anyone here. Just like Ativan, you either love it or it makes you feel like a zombie.

Thats the truth--getting totally nonfunctional would be way worse than a slight med addiction. After my intial symptoms of feeling out of breath, i'd add that to the list--id rather use a drug even if it was considered potentially dangerous than be out of breath. Im curious what "mast cell issues" feel like or present compared to other forms of pots???? The benzos are weird, hard to say whether every body system needs something unique or our conditions are different and it takes awhile to find what works. Its trial and error pretty much. Once you find something that makes a dent in making you functional its like a giant breakthrough, and theres always that fear that the benefits will eventually wear out. Im going on almost 2 years with klonapin, so hopefully im good. Im weird because i only take them when i feel a flare up, or when i feel a little off but want to get some excercise that day---never just to keep a regular dose going.

wow, i wish i could jog. I havnt done any intense aerobic stuff that would spike my pulse rate, except at mayo jacksonville for the stress test. I didnt finish that. Once you've been seriously air starved, it kinda scares you for a while, so these days i do a steady/slow swim or bike ride. Im careful when i walk or bike ride to go uphill, so if i have problems, i can turn around and walk downhill----one more crazy thing POTS messes with you but it is what it is. Most people dont excercise and ive heard with POTS you have to force yourself to do it or you'll suffer various problems. Some people get a functional breakthrough with the excercise too.

yeh, it seems in life like everything hits at once at the worst dang times. Do you have a relative who can care for you child, so you can hit the bed for a day and try to sleep this off? Stay hydrated. I wonder if any anti histamine properties in something like thera flu would help??? I can relate to breathing problems. Makes you panicky and exhausted. Another reason to try to be asleep during them than awake and feeling like youre pushing your chest in and out.

Apparently Ativan really helps some people with anxiety--not sure how many POTS people use it, and I dont know if its considered a histamine blocker at all. When my Pots/OSA struck i was getting Ativan and it made things much worse. Im really thankful to have had a physician who gave me an "old" drug like klonapin, because it was the first time I felt human after a flare up. It doesnt give you the "buzz" of valium, it just makes you feel normal again. Ive never had ongoing low blood pressure problems, so your doctor should know. I DO have low hearbeat, probably from playing sports all my life. Thus i cant use beta blockers for pot symptoms. But ive heard klonapin could be bad in the wrong doses for low blood pressure.

yes, i know of others with mast cell issues using klonapin. One way to understand it from Cheney is that the neurons in your brain are firing rapidly and the histamine properties of that "drug cocktail" is about the only solution to that CNS disturbance. With doxepine you get the added benefit of a sleep inducement--can rid your self of ambien if youre using it. Magnesium is probably the major deficiency in the American body, other than calcium, which is caused by porous intestine disorder blocking essential nutrients from finding the bloodstream, thus osteoporosis. its also interesting to google food exciotoxins: MSG, aspartame, caffeine, in particular, but for those who've gone into allergic fight or flight response to foods, corn, gluten, peanuts, and a host of others. Anaphylaxis can come into play with those---treated with another histamine blocker.

Makes good sense to me because your central nervous system and autonomic NS are in a sense short circuited and not operating according to design. It could also ???be the sensation of altered bronchial dilation which gives you the feeling that youre doing it differently than you've been doing all your life. I describe my breathing problems as "struggling to breathe" rather than being short of 02, since oximetry shows im up above 97 percent usually. The physicians who dont know POTS always "gloat" when they see this. "SEE? Youre ANXIOUS". Anxiety is the hole-card of an ignorant physician all too often. Ive found klonapin very helpful with this issue alongside hydration.