WinterSown

My pledge, well not really a pledge as it's more of a gut reaction practice. On the spot, I will verbally excoriate a doctor that starts with their I-don't-believe-you garbage. I totally will not take this anymore, I'm saturated with their wasteful crap. I've done it already and the stunned doctors don't do it again. Ever.

Call your local PT centers, many do have therapists that visit homes or hospitals and your insurance can cover a lot of that expense but you will generally first need a prescription for physical therapy from one of your doctors. Call your cardiologist or even your primary and set up an appointment to talk about you getting assessed for the need for a PT script because you are very weak and need help. https://www.webmd.com/pain-management/what-is-physical-therapy#1

Nothing to apologize for! So many people have been led to believe that only by fainting during the TTT you will get a POTS diagnosis , I wish it wasn't that way. I think it's confusing to patients. And, lazy doctors are apt to not do their jobs/learn when working off of mythology instead of fact. Some organizations, I think, do a disservice to the community and seem to promote POTS well beyond all the other dysautonomias. Many doctors, often short on time, read the first hits on the internet and wikipedia and seem to think that the criteria for POTS is the criteria for all dysautonomias and it can been used to exclude a patient from diagnosis. Syncope means fainting. My EP uses the his own hyphenated word; he says NeuroCardioVasoVagaly. I appreciate both his knowledge and humor with that because he knows it's so hard to point the finger at any one thing as being cause. He is very understanding of what a dysautonomia patient experiences.

POTS is not the only dysautonomia, there are over a dozen types. There is no such thing as passing or failing the TTT. It's a test to determine your body reactions. A diagnosis is made based upon your history, your current state, and how you respond to the test--the doctor and team of assistants are listening and watching you all the way. I never fainted, didn't even get close. This is a good page with descriptions of the many forms. What's to Know about Dysautonomia

I often have to follow an IBS diet which helps keep things moving smoothly, I bought an IBS cookbook which has a lot of good information on how to manage my diet according to symptoms--sometimes it's constipation and sometimes it's diarrhea. I am scheduled to swallow a Smart Pill and have another anorectal manometry test next month to see why I have so many problems and what can be done to regulate my digestion. This is a new doctor, she is also reviewing previous test results from other doctors to determine where I am now as compared to then--what is the baseline. I do not take products for stopping diarrhea because when I do I am blocked for four or five days, I have to let it ride through. In my pill box I add a colace to take with my morning and evening medicines. Motility can be tricky to find the right combo, I hope you get some relief soon.

You might have always had a weaker leg or side, a lot of us do, and it's being aggravated by your other symptoms and/or you are over doing it with exercise and activities and you need to do a little less for a while. If your leg weakness increases or is alarming to you in any way then call your primary and talk about coming in for a visit, or your neuro can check your gait and balance too. I was assessed by my neuro and DPT for left-sided weakness. When I am exhausted or just plain tired that left foot is going to drag and then whammo, I'm careening across the room--I will trip almost every time I am tired. I've been in PT consecutively for over a year for strength, balance and gait and it has been very helpful; I have a lot less bumps and bruises 💃. I cannot drink cold drink water right away after hard exertion or I will hurl it right back up. I have to take sips of cool or room temp water to slowly re-hydrate for the first few minutes, then I can drink more without it causing stomach upset.

You can try Sitting Tai Chi to help restore your energy. https://www.disabledsportsusa.org/sport/tai-chi/

My biggest gain has come from exercise, specifically physical therapy which has improved my balance and strength and has gotten me a more perfused and toned body. Without PT I would collapse more than I do, it's given me the strength I need to hold on and endure the worst aspects of my symptoms. Better perfusion equals to a higher level of alertness for me, I still get foggy but it is less often and less thick.

Thank you, I've never heard of neurofeedback or anything you described 😉

What type of biofeedback? Do you mean physical therapy? Some of my doctors refer to PT as biofeedback.

Eating better, eating smart helps everyone. My cardiologist took me off of all supplements and told me to get it all from the foods I eat and drink. I started to feel better immediately--not months or weeks but within a few days I had a big boost in energy, better motility and less flares. When it comes to food simple is always better like having a baked spud out of the microwave instead of frozen curly fries out of the oven. I make the effort to eat foods rich in electrolytes everyday and I take that ideology into the supermarket with me. I can spend four bucks on some cut up fruit or four bucks on crap--one of them is going to be better for me and I don't want to waste my money.

I walk my dogs every day, each one separate. Sometimes we can only go a short distance, like today, because it is very hot weather. I prefer when I walk them late at night, we go after dark when it is cooler and there is a lot less sensory overload which triggers my symptoms. There is less noise, less light, less traffic, less vibrations. I can walk much farther with them after dark. I do also go to PT and we work on core and balance which is what I need most help with. At home I have some hand weights and a ball I can sit on and march, and some balancing platforms too. I don't go crazy. And I am careful to not think of it as exercise when I am home, I still think of it as physical therapy to pace and moderate myself. I can overdo it and that's not good at all. When you begin a physical therapy or any exercise program you don't start out running a two mile race, realistically you start by learning to bend so you can put on your own sneakers. Whatever form of exercise you choose be kind to yourself and remember that it's all incremental. Doing just a little everyday lets you build up to where you can do just a little more, and then more and more. And keep your counts low--I never do more than thirty of anything and for new stuff it's less than ten reps. I absolutely do not force myself to do more than I feel comfortable doing. I do not push the envelope or I get very exhausted and it lasts for days. I must pace my spoons. DINET recently posted a link to Sitting Tai Chi exercises that are very gentle and passive yet still perfusing--a very good place to begin. I like that whole site, they have many possibilities.

I frequently have these symptoms, especially the noodle arms; when I get noodle legs I can trip or collapse. It gets worse in the heat and when I'm not well nourished. I have to eat small meals several times a day, if I get depleted my symptoms flare bad, especially numbness and exhaustion. Feel better soon!

This is their page. https://www.bidmc.org/conditions-and-treatments/brain-spine-and-nervous-system/autonomic-dysfunction

I glanced at their front page and winced the moment I saw a TM after the name. If half a sentence in you get a mineMineMINE warning then caveat emptor. My primary always says with new treatments "We'll wait six months and if it hasn't killed anyone we'll wait six more, then you can try it. Maybe." Sage advice. It sounds like you already know a lot of good ideas about nutrition and keeping yourself hydrated and healthy as best you can, you may be at the point where you are weaning off outside influences in how to care for yourself. I think it's awesome.

Which Beth Israel did you call? They have multiple hospitals and medical centers in NY and NJ. Each has a website of its own. You can go to their websites and enter the test names into the search boxes and see what comes up. I looked at their Mount Sinai West a site and did come up with results for Tilt Table Test, so I think you can use their search engine and enter the names of the tests you want and see if they are performed by BI and at which of their locations. And always call your other regional hospitals to see if they will take your test prescriptions and schedule your tests, they will send the results to your doctor.

I am sorry to hear you fell ill. Sounds like you made the right decision. May you feel a lot better soon.

Thank you Pistol. I just got back from walking the dogs, came in and was feeling a little depleted; I had a cup of ramen followed by a banana molasses smoothie. I feeling fine now. I have PT again in a few more hours so I need to stoke my electrolytes. I plan on taking a soak in epsom salts before I dress for PT because the magnesium does a good job of boosting my energy for about thirty or so hours. I already have dinner ready for tonight--I come home from PT and I am done for the day on spoons. The doctor ends the session with a very intense neck massage and I don't have an ounce of resistance left in me when he is done. Coffee helps. My doctors are pro and con on coffee. Some are totally are against it, some say limit, and some have an all you can drink keurig bar. I tend towards more than less--sometimes, despite everything I do positive, I have drag-my-bones days and need a LOT of coffee, a shameless amount. I don't guilt myself over it EVER--there is no fail in my thoughts. I won't take that mindset. In many ways I only started getting better and feeling like I could survive my life once I started telling my doctors what I was going to do and not the other way around; they guide me and they see me quick if there's a problem, but I live my life my way and they work with that. A lot of it is my attitude, I wasn't like this. I used to not exercise or eat right, didn't think about nutrition and health. And then things started breaking down and weird sensations crept in. After a lifetime of bad habits I only changed because eating right and moving my body make me feel better. Nutrition and exercise heal. @TCP I do a lot of core, it's a major part of my PT exercises. I have scrunchy vertebrae, balance and motility problems--core is part of almost everything I do. One of the more intense sets I do is balancing on an M-Board which took months to get strong enough to do without flying off; hard to do but it works, it's a top to bottom exercise, even my arms because all my muscles are in work to stay on that platform. I live in a cottage and don't have room for a bike but I have room for this board and got one. I have some other balance boards but the floating platform is the most intense. Core exercise is vital for so much of our health.

There are multiple forms of dysautonomia and their symptoms can overlap. Parts of them can go in and out of remission as well. It makes for a tough diagnosis. You've been through the ringer. I've had viral meningitis which lasted 17 horrible says; my left side is much weaker than my right but we've never associated the two. I go to PT twice a week. Many doctors have not seen enough dysautonomics to understand the many varied symptoms which can exist simultaneously. DINET's Age of Onset Survey is a treasury of symptoms and effects--it is a very useful tool. You can download it, read through and highlight everything that refers to you and bring it to your doctor; it's eye opening and documentation that you are not the only one with your symptoms and that certainly they are real and not imagined.

Thank you Kim. I love the new steel bottles. They insulate just like an old thermos but without the breaking glass liner. I drop everything twice so I need unbreakable stuff--the steel bottles are very nice for that. I had bought Hubs one for work and he loves it. They really do keep water ice cold for several hours. They can also be used for hot beverages, I'm looking forward to a bottle of hot mint tea when it gets colder. I like your idea of a DINET water bottle.

Floods are horrible, life altering events and I am very sorry you and your family had to go through that. They bring chaos, filth and disease. I too am a flood survivor. You may have to see an allergist. Certainly do call the carpet company and let them know you are having a reaction. Ask them for a web link or a printed list of the products used in making the carpet, the padding and any glues. You can bring this to an allergist and they shall work to knock down your reactions. I am hoping this is temporary for you--perhaps the instillation process brought up mildew spores that were in the flooring and mildew is the irritant and/or the new carpet may only need a steam cleaning to remove some of the chems left during the manufacturing process. I hope you feel better soon.

PT asked for a script renewal. No problem--half hour later it was on its way; I called the neuro and her office is mailing it right over, and I don't even have to come in for a visit. Everything in dysautonomic life should be this simple.Sigh. I've now been in PT continuously for over a year. I don't trip or collapse as I did because I am strong enough to hold myself up and I am beginning to experience more energy, but it didn't knock out my symptoms. I can withstand them much better and so I don't have to go lay down as much or for as long, most times I can get up faster. I love going to PT, I come away feeling better perfused and, of course, much better toned--it's a win there. After a year I'm still chasing remission but I know it's long distance and not a sprint. I don't want a cane, I don't want a rollator or anything with wheels and a seat; I just want to be flare free. I can walk a little wonky at times but I'm not collapsing--that's definitely a win. To celebrate my year of getting stronger I am treating myself to a new steel water bottle and some cropped leggings. I may go crazy and get a PayDay Bar for the salty goodness of it. Woot.

I'm sorry you are going through that. Who diagnosed your POTS and why can't they treat you? Why do you have to go to a different doctor? This so bugs me. It would be nice if your doctor would do both. Grrrr. My neuro, who is also a shrink, only works with me on balance, gait and fog; she oversees my neurotherapy, the EP manages my drugs, and the cardiologist focuses on entire physical health, mental well being, restoring and enriching the quality of my life; he's all about balancing heart, mind, body and soul. The three of them work in concert with me so that what they individually do overlaps with what the others are doing; it's very thorough care. The neuro has been wonderful, she was recommended by the cardiologist and from the beginning was in tune with my care--I didn't have to prove anything to her nor did she have to retest me to prove the cardiologist and EPs dysautonomia diagnosis. She checks my bilateral strength and gait, my vitals, etc, and has sent me for xrays, dopplers and sonograms of my neck and head. She doesn't do any bloodwork because the other doctors do that. Yesterday I called her office and renewed my PT script for the scrunchy vertebrae found in the doppler; they're sending it to the PT doctor and I don't have to come in for a recheck. Cool beans; everything in dysautonomia life should be so easy. WS

I get ultra hyper and can't think straight, I can start to shake, especially my hands. Diazepam to the rescue by orders of my EP.

If you ever feel like you are choking or cannot breath contact 911 immediately. It sounds like you've inhaled a mild irritant. You can blow your nose several times and gargle with warm salt water until your throat is clear. Change your clothes and scrub your face, neck and arms or, even better, a take a shower as the irritant could be on your hair as well as your skin and clothing. It's summertime and flower pollen, barbecue smoke, dust, lawn service products, mildew and humidity are everywhere; allergies are not only for spring or fall and can really surprise you in other seasons. I hope you feel better soon.