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Man, im sorry to hear about it. I know what its like to look back and say "i wish i hadnt done that". I had sudden onset symptoms that have never left, actually gotten worse. I also have extreme exertion intolerance----sudden blood pressure spike and im toast.Perhaps your various nervous systems will heal with time, management, diet. Definitely avoid processed foods, MSG, all alcohol, caffeine, dairy, and even gluten if you think it will help. Natural is best. Swimming is also the best excercise--no oeverheating issues and youre weightless in the water. Good luck.

Theres caffeine in decaf so that might help wean off. Id say it takes about a month before the cravings leave. After that its the jolt of energy you miss in the afternoons. I occasionally take a couple gulps of my wifes coffee in the am, but i limit it to that. The added benefit is eliminating stomach problems, acid, dingy teeth, and for some the hot subtance going into a body that wants to stay cool.

im pretty sure you can find it online somewhere. I remember seeing the protocol. But as you know living in AZ theres the heat factor to be careful with. Hopefully you have a cool room with a treadmill and weights? Im fighting with some overheating issues right now, so i miss my hour long (slow) walks to keep conditioned. But theres always the pool, its just a pain having to drive over there and all that.

Its the whole lifestyle change that people around us dont get. We have to think these things ahead of time. Until it happens to them, they just cannot get it. But we have to be confident that we know our bodies and in the end dont care what "ignorant" (uninformed) people think.

I sorta did it while i was on atkins and lost weight. For some people its definitely essential--you can be tested for it--- for others the grains and bread just maybe makes them gain some weight. FOr everyone else avoiding processed foods and sugars is seriously smart. MSG and aspartame are basically the same kind of trouble for others.

Im not commenting on your condition, you've definitely been on a tough trail with multiple issues. I was diagnosed with FM as well, but im wondering is it because youre experiencing increased joint pain? I have to say this controversially, but I have always believed FB is actually the presentation of something else that they cant necessarily diagnose, which in your case may be DA. Are they trying to get you on lyrica? Id just go into that whole thing with my eyes wide open. Theres only so many meds we want to be on at the end of the day.

I'll put my two cents in since ive been through all this at cleveland clinic, and because my primary medication is klonopin. 1. Be thankful you can get such incredibly advanced technology to find out whats going on. They CAN and WILL treat you if anything shows up. Theres always a chance it wont (for example, I passed the blood volume and tilt tests). You could have another more minor condition such as adrenal fatigue or deficiency. You have to keep beeing "your own physician" and doing loads of google research. I find that forums like this are easily the most helpful. 2. Make sure the person that goes with you is mentally strong. There is a certain amount of brain fog and stress in "getting around". Dont be afraid to use a wheelchair. They also have oxygen at these places if you need that. You can also call for a shuttle. The person with you should be able to carry your bag, organize your papers, and give moral support. IF its a spouse, let them go in with you to doctors so that they can recall what was said. It may be something helpful. 3. Take notes. You'll forget somthing you need to do. 4. Find a local pharmacy you trust right away. 5. THere may be multiple blood tests so SPACE THEM OUT. If you have low blood volume this can be important. Dont go in the lab 3 times a day. Go every other day and do them all. 6. Be careful of any fasting they require. Follow instructions to get the right readings. 7. Wear comfortable shoes. There can be a lot of walking in these things.

I had the Qsart sweat tests done at cleveland clinic. I failed half of those tests. I overheat very easily. I was at church sunday and had to leave early, it was probably 70 in there. Lately i wear shorts just about everywhere even in the fifites. Id like to have the test you described. Of course, i imagine its most important that your upper body sweats because thats where your organs are that need to be cooled. I notice also eating causes a tremendous amount of heat for non sweaters. It has to go through your skin if your sweat glands arent working. It can simulate a trigger or be a trigger to a major setback.

Great topic. Im a little different, I get nervous when I get any distance away from a hospital, or potential help if I need it. Anything more than a 15 minute drive to an ER and I get a little nervous. Same thing when i go walking (slowly) or when its hot outside. We always walk uphill so that i can "walk down" home if i get into trouble. Sometimes I walk alongside a bicycle uphill so i can coast back if needed. Havnt really had to do that yet. One time i felt really strong one morning and set off and got a little too far from the car. THat last ten minutes i was beating myself for letting that happen. Another thing is the condition of the tires on my car on a long trip. I picture being stranded somewhere in the middle of the night, not feeling strong enough to change a tire in the dark, and being stuck there. These are all the annoying things that none of us thought of before getting sick.

Great topic. Im a little different, I get nervous when I get any distance away from a hospital, or potential help if I need it. Anything more than a 15 minute drive to an ER and I get a little nervous. Same thing when i go walking (slowly) or when its hot outside. We always walk uphill so that i can "walk down" home if i get into trouble. Sometimes I walk alongside a bicycle uphill so i can coast back if needed. Havnt really had to do that yet. One time i felt really strong one morning and set off and got a little too far from the car. THat last ten minutes i was beating myself for letting that happen. Another thing is the condition of the tires on my car on a long trip. I picture being stranded somewhere in the middle of the night, not feeling strong enough to change a tire in the dark, and being stuck there. These are all the annoying things that none of us thought of before getting sick.

I notice that this topic isnt addressed on this forum much, but i see it on others such as adrenal fatigue/mast cell/ thyroid, etc. People seem to fall into two groups, too much sweating, or worse yet, too little. In my case, I come from a heredity of barely sweating at all, but i live in a hot climate. I may actually have to move north eventually toward canada. One doctor suggested i may have a condition called "anhidrosis" and i was given a med called pilocarpine to see if i could sweat---which i can, only slightly. Naturally, like with everything else with a chronic or undiagnosed illness, getting "conslusive" testing is elusive. Im consulting with a neurologist right now, but others consults with dermatologists and endocrinologists with anhidrosis. Luckily, this guy is SMART, not one of the lame ducks a lot of us run into not knowing what dysautonomia is, not knowing how to think outside the box of his specialty. He tends to think that these "hot flashes" can come from either internal body panic attacks (a poorly named phrase obviously since it has little to do with psychological panic), adrenal fight or flight problems, or cortisol deficiency (my cortisol was recently tested very low AM, although ive tested normally previously-----typical of adrenal fatigue because initially your adrenals increase output in the early stages before they deplete), or could be thyroid. IVe read where hot flashes or sweating issues can be related to parasites also. Not sure about mitochondria. Then theres the condition of hyperhydrosis----people who sweat buckets. They ALL tend to say they wish had anhidrosis but i can tell you that its dangerous if your body cant or wont sweat. THen there are other people who say they never sweat, but they'd be sick if they didnt. THey just dont notice that the moisture is doing its job, evaporating right off their skin. And for those of us with sleep apnea, if we have an apneatic event we can wake up drenched with sweat and an adrenaline blast with shortness of breath. Those are three things you dont want at one time. Wondering what sweat problems others have here, and have you traced the root cause of them or are they just along for the ride?

I notice that this topic isnt addressed on this forum much, but i see it on others such as adrenal fatigue/mast cell/ thyroid, etc. People seem to fall into two groups, too much sweating, or worse yet, too little. In my case, I come from a heredity of barely sweating at all, but i live in a hot climate. I may actually have to move north eventually toward canada. One doctor suggested i may have a condition called "anhidrosis" and i was given a med called pilocarpine to see if i could sweat---which i can, only slightly. Naturally, like with everything else with a chronic or undiagnosed illness, getting "conslusive" testing is elusive. Im consulting with a neurologist right now, but others consults with dermatologists and endocrinologists with anhidrosis. Luckily, this guy is SMART, not one of the lame ducks a lot of us run into not knowing what dysautonomia is, not knowing how to think outside the box of his specialty. He tends to think that these "hot flashes" can come from either internal body panic attacks (a poorly named phrase obviously since it has little to do with psychological panic), adrenal fight or flight problems, or cortisol deficiency (my cortisol was recently tested very low AM, although ive tested normally previously-----typical of adrenal fatigue because initially your adrenals increase output in the early stages before they deplete), or could be thyroid. IVe read where hot flashes or sweating issues can be related to parasites also. Not sure about mitochondria. Then theres the condition of hyperhydrosis----people who sweat buckets. They ALL tend to say they wish had anhidrosis but i can tell you that its dangerous if your body cant or wont sweat. THen there are other people who say they never sweat, but they'd be sick if they didnt. THey just dont notice that the moisture is doing its job, evaporating right off their skin. And for those of us with sleep apnea, if we have an apneatic event we can wake up drenched with sweat and an adrenaline blast with shortness of breath. Those are three things you dont want at one time. Wondering what sweat problems others have here, and have you traced the root cause of them or are they just along for the ride?

Ramek, THANKS, this is a great post and will be something everyone here will want to print up. Great job. I plan on "trying" licorice (was previously afraid it might make me tachy) this weekend, start small. I'll go through your list and learn about them.

I quit coffee in the wake of a panic attack i had when i didnt eat breakfast. That convinced me. Apparently the stuff goes right into your blood, and not only makes you tachy but triggers adrenaline and histamine release?? simply not worth it. I wont lie, it was 2 weeks before i stopped craving it, so not really that bad.

Im at cleveland clinic right now, they've been drawing blood about six times. Ive heard POTS patients cant donate blood but never gave a second thought to blood test requirements. Has this been an issue for anyone else? My internist who's REALLY good advised me to wait awhile before donating anymore. "You've been stuck a bunch, better wait about a month"

Definitely, a guy is supposed to suck it up, not complain, and get out there and make money. If you go through a period where you cant people whisper behind your back, i know this for a fact because it happened to me. There have been people who flat out think i was faking this. Which is odd, because I've traveled to both mayo and cleve clinic at expense and alone and i can assure you it was about as much fun as dodging sharks. Some weeks this past summer i just could not mow the lawn certain days. I would do it in shifts. It made me feel ridiculous because ive been strong my whole life. But within a minute or two, y'all know whether you can do something or not. And dont get me started on people "inviting" you places. You at first say yes, but after you back out occasionally they get resentful and angry. How dare you interrupt their fun? You learn to tell people "i wont know until that morning" which makes them angrier. Fortunately my pastor believes me and has never doubted me, and the science does not lie. The only way to even attempt to make people understand is to say i feel like ive been injected with toxic waste and am breathing through a straw right now. Ive actually handed someone a straw before and challenged them to breathe through it for two minutes. They didnt last 20 seconds.

Its my perception that the majority of people learn more about treating their disease on this forum than from their physicians. Based on that, it would be helpful to know your type, so that you can follow the progress of others with that type and see how their trial and error practices work. You might pick up something you consider trivial, and it could be a huge breakthrough eventually.

Just wondering, because ive discovered that quite frankly most people dont really care how youre feeling. Theyre busy with their life, and in our culture nobody likes a complainer. Besides this, many of us look quite healthy. In my case, ive gained weight because i just cant go out for those 90 minute walks or 2 hour tennis matches that kept my weight regulated. To add insult to injury, people only really see us when we're at our best. When we're barely functionaly obviously we dont go anywhere socially. So they think we're basically like that all the time. Finally, if a loved one has ever been to an ER room with you and the doctor said "you have anxiety, go home, here are some pills" then they tend to believe them. After all, theyre DOCTORS right? I remember the look on my wifes face after 1.5 years of searching for diagnosis. I had severe palpitations for the first time---palpitations, at least the banging in the chest kind, are not my worst symptom. She stood there looking at the EKG monitor when my BP went skyrocketing up and then plumeting down, and she could hear the beep beep bonk bonk bonk of the PVC's. It was the first time I think she had absolute assurance that I wasnt suffering some kind of ongoing panic attack. I've learned to keep my mouth shut more or less. If someone asks i say i have a neurological disorder that causes extrreme fatigue and arrythmia. They can comprehend that. I do feel strange as a man who used to be strong, that i cant pick up anything over 25 pounds, such as a tire, and carry it to the shed without major problems. Ive learned to move about slowly and methodically and to NEVER suddenly spike my blood pressure from a normal rate. That makes me sick for about 24 hours. Thankfully im one that Klonapin really helps. But I admit I hate being on a med just to feel normal. There is no "buzz" on it, it just makes me feel semi-normal for awhile.

Great news. Glad youre monitoring the right dosage and taking it step by step. Anytime somebody is given part of their life back its a big victory.

many years before i was diagnosed with sleep apnea i lived at high altitude. I had immediate problems and id bet it was early onset of snoring/apnea. But the doctor thought it was just some other problem. Back then getting help for apnea from a regular doctor was even harder than today. To make matters worse, i was a natural backsleeper and thought that was healthy for me. I was snoring most likely and blamed it on the altitude. Like another post said that condition may well have caused POTS -eventually. Not possible to know for sure.

extra sleep, cold swims, gatorade, eat right

POTS is a double and triple whammy illness, if i can use absurd language. I definitely believe that it is mentally harder to live with than physical as bad as that is. Also people with POTS frequently dont look sick, and people can assume theyre just lazy. And then the physicians we run into who have never heard of it. They think you have anxiety which can be humiliating. The only "vacation" i seem to get from it is in the pool. The cold water and compression and endorphins make me feel normal for an hour.

YES, usually unless im having a good day and i can walk at a reasonable pace. But most often walking any distance is an intimidating thing. LIke going to the mall, im afraid to get too far from the car and im always careful. When i do walks i never get more than maybe half a mile from the car. I also walk uphill or even while leaning on a bike so that i can coast back down if i run into trouble. With POTS they call this an "uneven gait" a lot of times. I would bet there are almost no people who walk the same with pOTS due to energy, breathing, tachy, vertigo or pain problems.

To reply, Im "better" in the sense that i prevent flare ups. Caffeine makes me tachy. Dairy made me extremely agitated (release of histamine?). MSG just makes me deathly ill----like you just drank poison. Im 4 days off gluten, but they say it takes a long time for some to see the results. Im going to give it 60 days, but i have nothing to lose, and it keeps me away from carbs which i need to do anyway. Im trying to get some proper carbs- a nutritionist told me your brain functions run on it, and it can cause liver problems to eliminate it. She said the high fiber lower sugar basic carbs (like sweet potatoes?) are best--maybe a half sweet potato a day. I was on a modified atkins a few years ago, and didnt suffer any problems, but the key now is balance. With POTS i dont want to lose weight at the cost of decreasing available energy

YES, thats a constant emotion that comes and goes through the week at various times. It can happen when youre alone and you have lot of time to think. I have a theory about it. Our ANS is supposed to make us feel off when its not functioning perfectly--it was designed that way. Its similar to someone having a panic attack--that (false) panic is designed to get you moving to get help (all t hat adrenaline surge is the fight or flight). With POTS the blood pooling gives you the feeeling like you cant move or breathe. Im learning over time that this is when i need to get moving any way I can---for for physical and psychoological reasons. Last night I felt awful, but went with a friend to swim at a health club. The first ten minutes was pretty bad, just getting used to breeathing right, but after then I hit my usual ephoria as the endorphins kicked in and did thier job. The cold water on my skin made me feel alive. The water pressure worked against the blood pooling. I spent 50 min in the pool, and by the end of it I felt alive and well, and it lasted for several more hours after eating a light dinner. I cant say enough about swimming and it helps me in a way nothing else can. We have to keep working against blood pooling issues----its almost as if theyre the equivalent of very low serotonin in a depressed person. Bloodflow, cool air, hydration, a good friend or support group all help. Hope youre feeling better, all of us has been where youre at many times.