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its reasonable to think that managing/improving symptoms is highly individualized. What works for one doesnt work for another. Good to see that you've kept a living journal of whats working for you and sticking to it.

3 things happened in a short period: Extreme emotional event lasting up to 1 year completely depleted all serotonin and probably wiped out my adrenals. Dental problem, overused antibiotics. Undiagnosed sleep apnea interrupted my central nervous system and may have damaged my hypothalmus.

I do fairly well at managing my lifestyle, which means avoiding triggers like the plague. Various triggers have included sleep apnea, food allergies, getting dehydrated, adrenal insufficiency, vitamin b deficinecy ALCOHOL, caffeine, aspartame, etc. But nothing completely wastes me like sudden exertion (a quick sudden spike in blood pressure)---especially combined with high heat situations. Anyone else dealing with this? I used to be a tennis player, which is a sport all about sudden rapid explosive movements, and then periods of rest. I havnt hit a tennis ball in over two years. I do walk five or six days a week, starting out at a slow steady pace, working my way up, but never fast. Ocassionally i break into a fairly slow jog at intervals being careful not to spike my blood pressure suddenly. At Mayo I was terrified of doing the stress test. I didnt finish it. Thankfully they let me start somewhat slowly. Ive seen several people on here who describe "re-learning how to breathe" as their number one symptom. My problems with it have lessened with cpap, however im still careful to avoid situations that require sudden exertion. Ive already decided if i get a flat tire in the middle of summer i'll call a tow truck. Cant do it anymore. But to describe the feeling of sudden exertion syndrome, i tell people it feels as if I was just injected with a toxic poison, and that my body has turned into a thin pane of glass that is about to shatter. Every nerve ending feels weak and fatigued. I struggle to breathe, and sometimes have to get in the bed for 24 hours because thats the usual recovery period. Anybody else?

Yes, confirmed extremely low cortisol AM. Currently on cortisone, testosterone, b12.

The problem is, most of us wouldnt list PAIN is our primary issue. For me, its breathing problems, dizzziness, weakness, shakiness. Thus, "working my way out of it" isnt really any option. I do walk nearly every day, but im incapable of pushing myself as if I was kobe bryant. But all of us should do as much as we possibly can. For other, that kind of pushing i suspect, can initiate flares. Many of us suffer from exertion intolerance. The prescription for people with fibromyalgia, for example, is NOT to push yourself or you'll wind up flat on your back. Dr. Thompson in Florida with POTS only sees so many patients because he cant PUSH himself without initiating meltdowns.

My flares are predictable from triggers---dehydration, heat, exerton. They usually last from one day to 3 days. I guess most of us learn as we go and desperately try to avoid the triggers, and either get better, or manage things better. I have the feeling there are also deficiencies within all of us that are unique, if we can learn them we can drastically improve things.

I think common sense dictates. I good amount is healthy. Especially before exposure to heat. But obviously gorging yourself with ridiiculous amounts is dangerous. A full glass regularly will keep you hydrated. I think some people overdo it and end up urinating a lot of salt and nutrients out that they need.

Exertion intolerance along with heat intolerance. Any sudden spike of my blood pressure suddenly makes me sick for 24 hours. This year watching football i jumped out of a chair and paid for it. It makes me exhausted and tachy, like im living in a glass body. I walk most days, but i ease into it. I can jog a bit after walking for awhile. The key is slow and steady. Ive learned to super hydrate using salt prior. This makes me sweat (my primary DA issue). Im one who almost never feels thirsty so i have to hydrate intentionally to make sure i sweat to make sure i dont overheat and get tachy. Overheating is a major flare inducer. Also causes respiration problems.

keep hydrated. And be careful with overmedicating.

APNEA: have you had a sleep test? 02: copd? Asthma? Need oxygen? PARASITES/GUT google the new parasite "protozoa" and air hunger ADRENALS can cause air hunger, low cortisol, get saliva testing THYROID ARRYTHMIA *****one drug that helped me with this type of air hunger was clonazepam.

Great topic. Ive always believed since getting sick that the mental part is easily harder than the physical challenges. This is one reason why a support team is so essential. When they help bear your burdens, your emotional health boosts your physical situation. Fear is the ultimate in mental challenges. It seems like its a big part of the daily battle in my thought life. I go back and forth between focusing on "what is the missing link in all this"?, and "everythings going to be all right in the end if i keep fighting this". For me, the biblical component is what helps me-the rock solid truths that have transformed my life and THINKING.....but not my circumstances. For a lot of people its all the research we do----knowing more than our doctors sometimes. I learn more on this forum than i do pretty much anywhere else. Im also on the cpap forum, and sometimes other forums such as adrenal, FB, etc. Even if you dont have those conditions, believe me, you'll find something that helps. The last thing is just have a trusted friend who can listen. We have a need to download all this junk to someone who doesnt give advice, just listens.

How do you feel with the swimming? That takes the weight gravity out of the equation. Also, any changes after a warm bath?

Have you looked at the possibiliity of dr. cheneys overstimulation recommendations with doxepin and klonopin? Maybe your adrenaline spikes are also going on on the cell level of over stim of firing neurons.

I've heard these are borderline foods because eggs is a common allergy food, and oatmeal can act like gluten for some. Id hate to give them up---its an easy, cheap breakfast in a world when we're tempted to eat all kinds of sugary junk instead. Anybody have any solid info on their impact with dysautonomic patients?

Sure sounds like there are automatic nervous system adjustment problems going on, whether or not its tachyardia........from an amateur viewpoint. Have you learned to control it at all with diet, supplements, salt, meds, lifestyle?

Pots cant take away your personality or your will. It can make you really frustrated and sometimes sad. Its really important that you dont feel lonely though. Hard enough to have a chronic illness without the support you need. Im sure im older than you, but when i was single, the best way to meet people was always through groups related to interests you have: singles groups at church, taking classes, hobbies, or even something like a fibromyalgia group. It doesnt have to be pots. It can be any chronic illness. Theyre strugging the same way. Not to mention all the all line social things going on, the dating things, whatever. Just be upfront about your situation and try to find some connections. Ask for help too. Call the director of a singles church group and ask if they can help you plug in by giving you a mentor.

For me its people who have never been sick and want to pass judgement on your illness since you "look fine". In their minds, looking fine means you feel great, and youre delusional.

Yes, I see people around me taking their health for granted, and now im amazed. I see people smoking and cant believe it. When I was at cleveland clinic i was in a flare, and i was amazed at how "fit" everyone was and how fast they walked from appointment to appointment. Just the ability to walk without any problems during a flare is a major problem, that 99 percent of people completely take for granted. But like you said, spiritually, it reminds you that the human body is designed to be so incredibly complex.

Have you had your glucose and kidneys checked? Not trying to scare you but it can be a sign of onset diabetes i think in some cases.

I honestly dont know much about mast cells. My symptoms presented very similar to a friend of mines wife, who has it. It was only a couple hour drive, so I went to see him, time well spent. I have sweating problems, also called anhidrosis. This is common in pots. It can be severe or more moderate, and it varies in various places in the body. I did the Qsert at cleveland clinic and was described as diminished from the waist down. They didnt act like it was a big deal, although ive since learned it is more serious, especially as it matters if you dont sweat at all, dont sweat at high temp, or dont sweat under exertion. Dr. Lichtenberger performed a mast cell bone marrow extraction. Amazingly i didnt feel a thing. He numbed the area first.

http://www.allergypartners.com/statesville/Lists/Providers/Profile.aspx?ID=10 I was at Cleveland Clinic about two months ago, and was diagnosed with partial dysautonomia. I also have sleep apnea and adrenal problems. When I became interested in Mast Cell Disorders because a friend of mine's wife had it, and I went to see Dr. Lichtenberger. He did a biopsy and tryptase test, and did not find any immediate evidence of MC, however he did diagnose me of another significant issue that I've followed up on. This guy is pretty amazing---he was doing mast cell research in DC at the NIH before the funding was cut. He's not quite an hour north of charlotte, and if you need to see him, believe me he will do everything in his power to help you. Ive been to both mayo and cleveland clinic, and he thinks outside the box better than all the hyper-specialists I saw. He can think outside the box. The med he eventually prescribed for my problem is helping. He has even been responsive on email, patiently answering various questions, and recommended other further tests. He is currently practicing as a mast-cell diagnostician and in allergy. Highly recommended, and he will talk to you like youre a human being and not a lab rat.

I hope you take this the right way----but youre exactly where you should be in a lot of ways, which is frustrated by having a chronic unexplained, and not perfectly understood illness. I wrote awhile back about what stage of grief people are in with their illness, and we switch back and forth between disbelief, denial, and acceptance. I concluded that people arent really in one stage or the other, but they can be almost in all of them intermittently. Im there, and it sounds like you are too. I go back and forth between thinking this will be ust some phase that eventually passes (its been 2.5 years) or its eventually going to completely disable me. To add insult to injury, a lot of us have had borderline test results, or have 70 percent of the likelihood of something. In my own case, I was originally thought to have MS and heart problems, only to find out I had apnea, 1 phase of dysautonomia but not all, adrenal problems, and palpitations caused in my nervous system. It can be like an infuriating puzzle. Im not sure I can help much, but Ive learned a couple things through trial and error 1. Most people will never understand your illness, especially since you may 'look fine'. Most wont have a lot of compassion or interest in it either. 2. You have an incredible need for really smart and supportive ...friends, a few anyway. Even one. They should be good listeners, detectives, researchers. You need help when youre sick. You also need a little bit of guidance when the brain fog hits. 3. Your spiritual life becomes front and center at a time like this, or it should. Before now, you may have been busy with life, too busy for God, but now your full attention is there. Thats a good thing. 4. Be confident in yourself and your knowledge in your body. You know it better than anyone else. 5. Dont be afraid to know more than the doctors. This forum is full of people who know more than most MD's about DA. 6. Keep researching, discovering more information. Forums are most helpful, I pick up things on mast cell forums even though I dont have mast cell issues. Ditto Fibromyalgia (even though i was diagnosed with it, but dont believe I have it). Some of us here probably have lyme disease but dont know it for example. Some are d3 deficient. Some have sleep problems or serotonin problems. Keep learning, but take breaks when you get burned out. I hope that helps, PM me if you'd like. Ive learned the importance of having like minded people around you. You probably dont have so many in your real life, but when you get sick you need them.

Id take whatever appointment they can give you the earliest, and then try to get a cancellation before then. These people are busy. Your health is more important than convience.

ive been researching isocort and has similar ingredients. Theanine as vitamin b1, you can get it in prescribed B complex in a high dose.

Gatorader and powerade zero help me a lot on an empty stomach. But you can make your own Dr. Oz gatorade at home without the additives. You can also consume things like bananas and OTC vitamins. I tried baking soda one time for hydration, but it made me swell up like a balloon and retain water. Maybe helpful in extreme cases.