spinner

VERY sorry, its a difficult challenge. May I suggest swimming? Its antigravity aerobics, plus pressure on your body, and the coolness seems to shrink near surface vessels. For me its a miraculous therapy that last for HOURS. I dont have your similar condition, but i believe this is a universal nervous system aid. Swimming, klonapin, hyper hydration, gatorade, salt, sleep, vitamins, enzymes, NO MSG, no diet soda all help. For many of us keeping cool or cold makes a huge difference also. A 60 degree room with blankets at night may make a big difference.

With all due respect, most of them dont know DA, and they'll follow their own procedures. Can you go up a notch in care to the cleveland clinic or somewhere? You wont experience this kind of incompetence!

YES, the broken sleep chain messes us all up and too much sleep causes migraine symptoms. I'll try the bed elevation. I DO swim in salt water, my local pool is salt not chorine. I wont drown, LOL, but its rough forcing myself to move during a flare. With sleep its best to stay circadian, maybe with a shorter nap during the day, but we all know with flares hitting the sack is the best way to ride them out.

Each neurological problem is distinctly different, i think theres too much assumption that one disorder acts like another. Besides, SALT and POTASSIUM can have mutually harmful effects on one another in certain disorders and you have to know what youre doing and what works in your own case. With periodic paralysis and lactic acid salt can harm your potassium level. Its best to consult your doctor.

Hi guys, this ones fairly new to me. Ive become very proficient at warding off flares, except especially when my diet spins out of control and I get a hold of an excitotoxin unaware, such as MSG hidden in some food, or I get exposed to too much heat in a day or my electrolytes spin out of balance. The way I deal with it is to go to bed----I feel exhausted after all, extremely weak, and sleep comes naturally. And usually within 24 hours Im good to go again.......carefully and slowly. The problem is that too much sleep in a 24 hour period ................ such as 4 hours asleep, 2 hours awake, and repeat............. gives me NASTY migrained type headaches that are worse than the flare itself. It feels like my head is made of glass. Any noise at all it feels like its reverberating in my skull. The sound of an abulance of something drives me nuts. And my lymph nodes seem to swell up and are tender and my hands feel pretty shaky. Ive learned to try to fight sleep during this process but obviously my body is exhausted with the flare, and I drift off only to to go through the migraine again. Anybody found a way to deal with this? I call it too much sleep syndrome, and its a nasty thing to deal with. Some gatorade helps a little as does light excercise. Im sure swimming would be the ultimate antigravity equalizer to those constricted small blood vessels in my head but ironically I dont have the strength to do my usual swim, Im just to weak. Its a nasty catch 22. Im wondering if theres a really good hangover remedy that might help.

Without getting too specific I think its important that POTS sufferers are very aware of the various other disorders that often go hand in hand with the disease. Whether it be disorders in the sympathetic nervous system, endocrinology, viruses, deficiencies, apnea, pathogens, whatever. If youre going to be a student then you should be constantly taking in potentially relevant information.

Good thread. Very relevant. Im in a similar situation, when i got my current job i made it clear that i had certain limitations especially involving heat intolerance. Unfortunately, ANY UNDUE STRESS can make our performance worse and make us miss work as it can cause a flare. Im currently learning the parameters of what i can do and what i cant myself. Long term, im looking at self employment again, because quite frankly at least one or two days a week i just cant really function well enough to work 8 hours. Its scary. Especially as im paying my own health insurance. Most bosses may be understanding, but if you dont serve your purpose youre going to be gone. There is only so much flexibility regardless of their compassion. We have to be really creative when it comes to making money.

Its infuriating when the tests for lyme and other things such as celiac are unreliable. It sends us chasing down rabbit holes. For most of us dysautonomia isnt an isolated condition. You've got to know all the different triggers, flares, causes, and inter relationships to be making any progress.

http://www.envita.com/lyme-disease/finally-one-link-established-chronic-fatigue-syndrome-cfs-lupus-fibromyalgia-autoimmune-disease-chronic-lyme-disease/

Franch Lichtenberger in Statesville NC with Allergy Partners is an expert with Stem Cell diagnosis. Other than that maybe Mayo in Jacksonville. There is also an integrated medical group in charlotte.

True, but electrolytes checked out. Ive been dehydrated before and now i mainlife water all day. This was caused by something else, maybe the adrenaline someone suggested.

When you have multiple medical issues diagnosis is even harder on an individual basis.

I forgot to add leaky gut syndrome, permeable intestine, is very common and will ruin your immune system. If that happens you wont be able to function normally at all.

Obviously we cant give medical advice here, but i'll share some things that have helped me. Ive been in your shoes getting long term flares where i could barely function. These are some things I discovered: 1. NEVER estimate the impact that another medical condtion can have. For example, CELIAC disease which is hard to diagnose is VERY common for the simple fact that our diets are much more wheat oriented now (wheat is a grass) and most people cannot handle the grass. It can create a food allergy in your body that mimics just about anything. 2. Make sure youre tested for lyme and parasites. 3. Be VERY careful with your diet. Learn what you can tolerate. Many of us are highly allergic to eggs, peanuts, milk, etc. 4. Endocrinology is an inexact science and hormones can lay you low. The adrenals and thyroid in particular, but for example cortisol levels are extremely important in your immune system. 5. Secreted chemicals can make you deathly ill such as adrenaline etc. 6. Serotonin low levels can make you very sick. 7. Drug combinations can weaknen you. 8. Sleep disturbances are under estimated. Have you had a sleep test? Are you going into enough REM? Are you snoring? Do you have apnea? That could exhaust you right there. 9. Vitamins and amino acids deficiencies can make you bed ridden. Commons ones like folic, b12, d3, and otthers should be researched. Iron is also important, as is magnesium. 10. Hydration obviously, but some people need salt. The salt can be eliminated in some people on a cellular level and theyre a walking electrolyte disaster. Have you tried gatorade? Or Dr. Oz homemade gatorade. Look it up. Powerade makes a zero cal. 11. For some people excitotoxins is a problem. See dr. cheneys work with fibromyalgia. Doxepin and klonapin help some people with a synapse problem. 12. For some people MSG and aspartame and chemicals and nitrates make them deathly ill. 13. HIstamines can cause anaphylactic type weakness. 14. Do you have amalgams, mercury filings? Toxic metal testing? 15. Environmental allergies?

Thanks guys. I ended up in the ER last night (which i avoid at all costs). I'll get my adrenal number later, the other labs were ok, but i had syncope and could barely move. YES, i popped a hydrocortisone pill before going over there and felt better after a couple hours. As usual my resting pulse rate was under 50. My blood pressure was high when i got there 140/95 and an hour later plummeted to 105/65. AGREED, there may be some connection to faulty adrenals trying to pump out adrenaline and the muscle cramps........ I hadnt thought of that. Maybe thats what threw me over the edge----adrenals pumped out what they could and then i completely crashed with nothing in reserve. I had gone home from work, felt very sick after the stress and cramping, went to bed, woke up a few hours later desperately sick. Popped a hydrocortisone, stumbled into the ER, and was released this morning. They said to call in for the HC AM number. I wish i hadnt taken the pill because Im curious how low my adrenal level went. They didnt keep me because doc said i wasnt in any kind of addisonian crisis. Maybe thanks to the pill. Its all part of the process of managing these flares. I can go a couple months. But if i get stressed big time i break down like an old camaro.

Partial dysautonomia as diagnosed cleveland clinic, major sympathetic nervous system breakdown, immune system probably severely depleted and gut flora whacked, treated for parasites, major adrenal misfunction (hydrocortisone), pancreas numbers way down, prone to major PVC and wild swings in blood pressure and pulse, low resting pulse (below 50), fibromyalgia diagnosis (eye problems), vertigo, syncope, severe vertigo, weakness, complete heat intolerance, severe excercise intolerance although I can walk an hour a day at a slow pace often, severe late onset food allergies, peanuts, milk, eggs, suspected celiac disease but no positive test yet, negative test for lyme although ive had all the classic symptoms, -using vitamins d, b, b12, folic acid, bee propolis, magnesium, iron, --swimming seems to help me immeasurably -need klonapin to function although i never feel a 'buzz' -breathing problems intermittent -diagnosed significant sleep apnea -weight gain although im working on lowering that -sclerodoma like skin peeling, dry skin, and occasional rash

Cant figure this out, first time its happened. I DO get stressed out, but of course like you guys ive learned to control flares. FIrst sign of the usual headache, weak vertigo, breathing problems, racing heart I try to lay down quickly. But ive been working an easy 8 hour a day clerk job and im overjoyed to be back at work. Im two months in, and basically handling it ok with no major problems. My miracle drug Klonapin to the rescue if i start feeling like a sheet of glass vibrating to rap music. Last night for the first time I got totally stressed out----customers yelling, high pressure, very busy. And my bodys muscles completely cramped up like i just finished a marathan and was dehydrated. But I'd been drinking plenty of water all night. Any ideas? Salt doesnt help me a lot, but maybe i need to reconsider. Maybe i was on my feet too long? My immune system is shot and maybe it released adrenaline or someething. Any ideas why my whole body would cramp up????? Im missing something.

My fingernails are cracked like a pot. Ive developed a scaly dandruff that nothing seems to work. Also rosascea, dry red skin. These conditions are also related to fibro myalgia

I used to be able to function/run/bike/tennis in hot weather. But i can barely move in it now, so naturally i tubbed up. Im learning to eat correctly: sweet potatoes, bananas, turkey, egg whites, cashews, avacadoes so im targeting back to my correct weight. I drink no soda, and just a little decaf. I also drink a good bit of water and i walk a slow hour six days a week.

IMHO a pots patient is suffering from multiple issues----nervous, immune, digestion, sleep, chemical, reaction, food sensitivity, systems. I have to be honest, i cannot comprehend living in new york city and working a stressful job. I have gotten my life to the point where i control most things: i excercise but its a very fluid and controlled hour where i walk at a moderate pace. I eliminate any stressful noises including loud music, television, alarm clocks, or city noises. I try to eat natural foods such as sweet potatoes, oats, bananas, etc. I try (but fail) to keep a regular sleeping pattern although i ALWAYS ALWAYS get enough sleep. I never go to work tired if i can help it. I know what my body is allergic to. I know what medication works for me in a flare (klonapin). I avoid unhealthy loud people. I am religious about avoiding heat, and love cool weather, and have learned to breathe deeply on a daily basis. I eliminate toxic people or judgemental ignorant people. This includes people who deny Im sick because I "look fine". This also includes bad doctors. I live in a suburban setting, but if not for this it would be country. I love the company of pets, especially calm dogs who are good companions. I avoid watching the news. My bad news is enough bad news. I take one day at a time and try to enjoy the very basics of life. I value one good friend over 20 acquaintances.

Yes, and it can be comlicated if your heart and pulmonary checks out. Be prepared to be told you have anxiety. Factors: food allergies, medications, celiac, asthma, sleep anea, breathing shallow, symathetic nervous system, digestion, leaky gut syndrome, and on and on. You have to do your research and correlate symtoms. The medication klonapin may help you if this is a critical situation

I really try to be patient in life but sometimes it gets to be too much for me. It can be a series of little things------last week the insurance company lost my payment and it turned into a huge hassle. Later that day i went into walmart to find something simple and an employee blew me off and i got irate. Usually id just forget it and drive on. A couple days later a family member was giving me "advice" that was unwanted and I cut them off. What is it about some people who thinks its their job to give people advice? The only solution for me seems to be to retreat to my bedroom and sleep as long as possible. But i regret the incidents of anger or impatience and find myself trying to apologize later. Our endocrine/immune systems are designed to assist us in working through stress. When youre compromised you just dont have the energy to fight it.

IMHO i wonder if you have friends or family in a country setting. Or suburban. Stress is the sworn enemy here. A regular schedule, avoiding flares lots of sleep a diet that works. Stress wrecks me. I dont care what kind it is. Noise, heat, arguments, haggling with insurance, doctors appointments, work, loud voices. Tranquility is your ally.

Im not sure theres an answer. Dont we alternate between mental states, fear, giving ourself pep talks, worrying that other people dont believe us, having doctors tell us we have anxiety, wondering if we can work full time or the emotion that a cure is right around the corner ??? I dont really have any expectations. I let them come and go but i try to stay on course. Theres danger in staying in any one thought pattern for too long. Escaping (dreaming) is ok for a time but it can become destructive. So can "coping".

Youre in a difficult situation but do you have any options? Financially? Living in a much cooler environment might help, and especially the ability to live in a cold room. Also, rather than ambulance trips, an apartment eventually close to a major trauma center? Something within 10 minutes where you could avoid what i call the being carted off syndrome. Surely a POTS center like mayo can prescribe something to control this event when you feel a flare coming on. My prayers are with you.