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I cant believe peoples spouses dont believe them. But im separated and my wife doesnt really believe me. Does it sound spiteful to say i wish i could give her this for 24 hours? I suppose people who have never been chronically ill equate the whole thing to a mild bout with a sinus headache or something. They have no idea what its like to not be able to move. Poisoning is the only way to describe it really.

Im pretty careful when I feel a vertigo flare coming on. Especially getting into the shower. Keep the water cooler and my clothes ready. Lol, worst fear would be passing out and taking a ER ride naked. "Panic" is real, but WHY is your system panicking is the question. An autoimmune response could mimic panic but it would be caused physiologically, not mentally. Has noting to do with mental illness. You can even have attacks in your sleep.

I never go all out physically anytime. I havnt hit a tennis ball in 2 years. Tennis is nothing but bursts of exertion and then rest. I NEVER bend over at the waist i always squat--to pet a dog, or pick something up. I also avoid loud stressful noise like rock music, or high pitched noises.

Never feel embarassed. You have a medical condition and its going to affect you and youre going to need medical attention. Syncope is a serious issue because hitting the floor can be dangerous. Ask any MS patient. The doctors know what theyre doing even if theyre not pots experts. Ive found most neurologist know something about dysautonomia, expecially NEUROLOGISTS. I had a similar situation as you and was admitted to carolinas medical center in charlotte about six months ago. It was there that I learned a great deal more about staying hydrated, and that i had severe adrenal insuffficiency. That was valuable information.

As the article indicated the LIVER AND KIDNEY AND SPLEEN are the detoxification instruments that sufffer. We dont die from ALLERGIES (except in the case of bee stings etc) but they make us deathly ill including food allergies. It creates an immune reaction in our bodies. Besides, many LGS or FM patients ARE deathly ill and no doubt some have died. No doubt some allergies have killed people through malnutrition and the destruction of the immune system. Intestinal permeability makes sense because the premise is INCOMPLETELY UNDIGESTED molecules. We already know that the food enters the bloodstream but it is not ideally broken down. Then this becomes not only a nutritional problem but an endocrinological problem and eventually potentially a nervous system problem.

If your health insurance can handle it, go to the cleveland clinic or mayo, etc. Its not like a normal "hospital" where you have to be admitted. They run tests and try to get you moving along quickly seeing specialists as information becomes available. You can fast track things if youre aggressive. Id plan on a couple week stay so get an inexpensive motel, maybe a weekly. If you require hospitalization they will surely admit you. You need to find meds that can help you manage and function, and find a doctor who can eventually treat you at home with the information they uncover. Be prepared to be detoured into other areas, such as endo, gastro, internal, cardio, ETC. That would be my advice if you can manage it. Better than going into some hospital where they really cannot treat you. MOST ER's only try to "stablize" you these days before springing you into specialization. At the CC, they can actually TREAT you on the spot.

Chronic illness kicks you in the teeth in more ways than one. Ive had close family members tell me they didnt believe i was that sick. Im working full time now, but others inferred that i was lazy. But mostly, people just dont really care, much less even remember that youre sick at all. Its the handful of true friends that make life worthwhile. Its not easy but the way i look at it is i weeded out a whole lot of phonies. It also makes you appreciate the character of a few people who really care. Agree that only chronic sufferers can relate and befriend in the way we need, other than parents who love unconditionally. Or if youre lucky, a spouse. My spouse pretty much fit the above category of disbelief. Im currently separated.

Its the shriek tinny upper end scraping noises that drive me nuts.

Get the small window ac unit at home depot, put it in your bedroom, and dont get overheated. Heat is my worst enemy alongside food allergy flares. Stay cool and calm and you can manage 100 percent better. Never get overheated or dehydrated.

Im back working, attempting to do 8 hour shifts in a supposed "lower stress environment". Right away I've faced some classic obstacles: -heat issues (the women in the office love to keep the heat blasting at 75 degrees), shouting bosses, pressure to learn new software, temptations to eat junkfood on the run, and making sure to stay hydrated and avoid coffee). The BIGGEST problem has been surprising. While at home or being self employed, I was never exposed to this. COUNTING CHANGE in the office doing end of day reports employees are dropping coins into moneyboxes. Sounds minor, but its like my sympathetic and autonomic nervous systems are going on hyperdrive, --its as my head is made out of glass and somebody is slamming an ice pick into it. I also struggle with shouting from the bosses office. He's very volatile. He gets into arguments with vendors and I pray somebody shuts the door. Thank goodness theres no music being "piped" in. Ive noticed at certain businesses where younger people work they BLAST rock music (ran into that this week at 7-11 where its about 80 degrees in there and theyre playing crappy pop music at about 90 decibels). Anybody else battling various weird noise issues at work that they can avoid at home?

IDEAS (not medical advice, things I've discovered are related to topic) 1. sleep apnea, low oximetry 2. Thiamine, vitamin B, sympathetic nervous system, cholinergic properties 3. Iron, anemia, mononucleosis 4. Alcohol, caffeine, anxiety 5. Med combinations, meds 6. DIET, histamines, food allergies, leaky gut syndrome 7. CELIAC intolerance, 8. MSG, aspartame, nitrates, sulfites

im on cortisol, AM only. I havnt tried licorice although i have some here. The supplements i have are called ADAPT. You can probably google that for ingredients within that you can buy individually. The best test for this you WONT get at your regular doctors. You'd need an integrated or hollistic doctor who will order up a salivary cortisol test for you, or you can even order it yourself.

Has your son been tested for sympathetic anhidrosis? I honestly dont know a lot about it but some peoples nervous system stops giving the signal to sweat and cool off. When he's exposed to extreme heat out of a cool house is he experiencing not sweating, or is it something else? Ive also heard of something like vasodilation, or constriction of blood vessels near the skin. I wish i knew more about that. http://www.medlink.com/medlinkcontent.asp Above is " acute pandysautonomia". This at least SOUNDS like what your son is experiencing or similar

Ive posted about this before, but not only do I have extreme heat intolerance, but I have what i have come to call sudden exertion syndrome. I tell people that when i "suddenly spike my blood pressure" (pick up something heavy, start running from a dead start, etc) I get deathly ill, headache, short of breath, agitated as if I just drank drano. The best way to describe it is as if I was injected with poisoned steroids. Anyone else have these problems in combination? My best theory is that two things are happening: the adrenline spike and the extreme autonomic, sympathetic, or central nervous system agitation. It could be related to ganglionic neuropathy, exposed nerves? Im curious if anyone has figured out what is the underlying cause of both the conditions and how they manage them, if at all? Obviously, Im on Klonopin but that only treats the problem, does not correct it. I move pretty slow considering I used to play tennis tournaments in 95 degree heat. I walk 5 times a week at a slow pace.

Wonderful news. It sounds to me as if you had a component of leaky gut syndrome alongside POTS. Many people have another major illness including fibromyalgia. Diet and chemicals and meds are often underlooked. We also dont realize the chain of events, sometimes gut, then immune, then allergic, then adrenal, then pots, then heart problems. Tracking it back, not surprising some of us trace it back to gut problems and either deficiency or junk going into your bloodstream being attacked by immune and lodging in your tissues setting up shop and making you REALLY sick. I think you can post your meds, i dont think that would constitute giving advice. Its just a journal of what worked for you.

Get a sleep test immediately. You probably need cpap. Meantime sleep on your stomach or side. Dont eat anywhere near bedtime.

have you had an am cortisol saliva test? Sleep test? Both can cause some of what youre describing

I know exactly where youre coming from. Im not giving medical advice, but im lending experience. You are on the EXACT right track by "consulting". The idea is that you ARE working at home. Set up an office and actually DO work of some kind. Figure out your talents and some way of making money. Ive done it myself so it can be done. Then you HAVE a job. Having an office that is isolated that is set up like an office will help. Get a business card printed up. You can make money in all kinds of ways. 1. Selling. You can become a manufacturers rep with a telephone and a business card. Look online for MANA. Anyone can work a phone. PM me if you want to know how to do this. 2. Invest. Call yourself a day trader. Do small investments. 3. SERVICE. There are tons of service jobs or repair jobs. For example, learn to work on computers. Take a class or read a book. Then buy broken ones and fix them and sell them on craigs. Or do it with bikes or anything you can set on a desk and fix. 4. Memoribilia. Open ebay accounts, and use craigs. Buy and sell. Restore things. The possibilities are endless. All you need is a tiny office. Call yourself a WORK AT HOME DAD. People have respect for that. Ive made money doing it for years. Craigs is FREE. You can sell almost anything on there.

1. have you tried a med like klonopin, or a ssri like efexxor? You may have serotonin issues beyond POTS. 2. GUT/DIET. It sounds to me like you have absorbtion problems going on, mineral and vitamin deficiencies from a gut/bacterial/leaky problem that is preventing absorption. Have you had all bloodwork done to see where youre deficient? Have you had a vitamin b12 injection? B12 is one the most common deficiencies and it can wreak havoc. Thiamin is another b vitamin to be checked alongside potential celiac disease and food allergies like cassein. It sounds like your body is not giving you the nutrients you need and you feel nauseous as a result. Im not giving advice other than GET TESTED and find out why you are nauseous. You could simply be allergic to something. A holistic medical doctor who can check for parasites, leaky gut, and adrenal levels via salivary can really help some people. Its not ALL just pots.

Yeah, its not for everybody that is for sure. Some people need increasing amounts, etc. Im not one of them, thankfully. For that matter, any drug can have a bad reaction individually, I went on Lexapro 2 years ago and almost went into mania. The stuff fluttered my heart, made me sweat, and made me delerious. Almost like injecting adrenaline into a hyperpots patient or someone with anhidrosis. The blessing in all this is that if you find YOUR right med, it can be used to help you manage a chronic illness. I have not found klonopin to be less effective over the years. I dont use more. My goal is to use less, each day is either 1 or 2 mg as needed. It also helps me excercise. My nervous systems are messed up, and before i do my daily 1 hour slow walk i often pop a pill and it smooths my system right out and makes me feel normal. No palpitations, breathing irregularities, headache, weak dizzy feelings. In general it acts like taking insulin for a diabetic. Puts things right inside there somehow. Great for a nighttime panic attack or sleep apnea event too. Wake up from a breathing problem at night and your CNS is whacked out. Klonopin for me anyway takes care of that within a half hour, back to sleep.

Dang, I'd like to use this one, and it would be true with my fluctuating BP, palpitations, PVC's, and low heart rate. But at my age 52, id be afraid people would think I was about to go into cardiac arrest lol and id never be invited anywhere. But i like your strategy. That would pretty much end ALL wrangling and guilt trips, woulnd it?

I have a very low heart rate (used to be an athlete?) and i have to stay hydrated to keep my blood volume high. I use sea salt. MY Bp can fluctuate wildly. This seems to be more in the autonomic nervous system reactive area. Or in the vascular reactions unde rthe skin. Or possibly in the part of POTS related to sweating. (and cooling)

It must have to do with our various nervous systems reactions (automatic or sympathetic?) to our illness. For some circulation seems to be impeded and constricted and for others not. I get cold feet too, freezing actually, but the rest of me feels overheated. We cant explain these things, we just keep working to manage them. I envy your situation, you can always get warm, but getting cool is not always even possible. Just think of the number of buildings youre in during the week in which you have no control over how hot it is in there. Imagine trying to work at one of them.

Im not advocating lying, but im gaining some wisdom in dealing with people who want something from me---usually in the form of coming to a particular event at a particular time at some time in the future. The holidays for example, "WILL YOU BE COMING TO CHRISTMAS" BECOMES a very loaded question for many of us. Because we simply dont know what Christmas morning is going to hold. Here's what I do. And im not advocating lying. But saying "i have POTS" I wont make it" just doesnt fly in their worlds. Its too non specific and vague. Dani's post inspired this post, and Ive learned to tell people two things: 1. NO. You'd better not plan on me coming because I have an IMMUNE DISEASE (give them something they can wrap their minds around). If I feel better than day I'll call early and ask if i can still come. If not no dissapointments. 2."The immune disease makes it impossible for me to function, so I have no choice but to wait until that day to see if im functional or not" Its a hard fact we all learn that most people dont give a blank about our medical problems. They mainly care about their barbecue and whether you'll be there and be any fun while youre there. This inclues family members. Its the hardest reality of all, but some of our spouses dont believe we are really "that sick". My own wife has doubted me and told her friend I might be faking some of it. This.....while i was in bed feeling like death. My point being that we have to communicate somehting that people can wrap their brains around and that they accept. Using "POTS" as an explanation may not be working for you. Make them realize that youre essentially disabled, not mildly inconvenienced because otherwise they're going to think youre not participating because youre mildly sleepy or lazy.

YES> YES> YES> All of us are on the receiving end of other peoples agendas and they get pissed off when we cant "commit" to something according to their timetables. I have learned to say NO NO NO. That way you cannot lose. If you happen to feel good that day, then call them and say "im feeling better can i help out?" But if you dont, they'll FRIGGIN EXPECT you to be available when in fact you may be non functioning. The sooner you accept the fact that most people dont give a blank about your disease, especially as it inconveiences them, the quicker you can accept this reality. Its a hard lesson but you will learn it sooner than later.