WinterSown

If you let them they will keep doing it to you. Attitude counts for a lot. I will rapidly and assertively, verbally bite the head off of any doctor who tells me I don't have dysautonomia. I've done it and it's a most satisfying` experience. I went today to a doctor I haven't seen in many months and all the current diagnosis with the diagnosing doctor's name for referral went into their files. There was not a single question about any of it. Dysautonomia and wonky symptoms accepted. It was a good visit.

Yep, that's it. That is a perfect description of the sensations of classic vertigo. He may also have experiences of other movement outside his body, it doesn't have to be the spins. Things may seem off or distorted. Take your son to his pediatrician or your primary and ask them to please do a Dix Hallpike Maneuver, which is a simple, non-invasive test that any doctor can do in their office. It only takes a a few short minutes and the doctor can tell quickly if there is a significant problem. Mine is managed with PT and low-dose valium; 2mg pills but I bite them in half. I don't know what you have in your medicine cabinet but Bonine is wonderful for getting rid of the foggy fuzzy sensations in your head. My PT sessions started out in a darkened room with the DPT rotating my head to reposition some crystals in my ear that were out of place; it took a few visits but that was a great help. Also, he has been helping me with balance and core strength so if I trip I can usually keep myself from falling. It's like a miracle. Vertigo is serious because of the loss of perception, the nausea and danger of having balance and gait problems. It can be corrected. I feel so sad for your son, vertigo is very unpleasant at any age and I hope he feels much better soon.

Once in a blue moon my numbers look like POTS, I have VVS and OI with Drop Attacks, Vertigo and Dyssnergia. My EP calls it my NeuroCardioVasoVagulyThing. Pain is a big symptom, I have blood pooling and wicked bad paresthesia. A lot of OTC pain meds--aspirins work great but don't last too long. Naproxy sodium works better but without omeprazole it bothers my stomach. Fortunately my doctors are all on board Team Trudi, yay!, it is very well established that I am a dysautonomic trying to get better. They're all aware I do advocacy so we have great discussions because they know I've studied and I am sincere. This, to me, was one of the most important tools in getting respect and some extra minutes from my doctors. I keep them appraised of my studies and what's new in the world of management and care for dysautonomic patients. Show your doctors you are studying and making a herculean effort to get better and they talk to you about it. For care, that's a win.

I get this burning at PT after I've been on the hardest balance board for several minutes. The PT doctor told me to get on the bike and pedal as fast as I can without resistance--it works like a charm to get circulation back into my legs which takes away the pain. We've now added this fast biking as my last step in the PT workout--it's great.

This post is not TMI, it's something we all go through, you are not alone. Yesterday I saw the motility specialist, monday I see the procotologist It's a forever ongoing grief to get me happily content in the bathroom. For now, I suggest you might be helped by following the BRAT diet (bananas, rice, applesauce and tea) and eat foods that will help settle down your tummy. This is a not a pleasant situation I hope you can get under control soon. Just as we have cardiologists and neuros we also need GI/Butt specialists too. Never ends. I hope you feel better soon.

I hope you can get cared for there. I think most hospitals have a social services representative that can help you get set up with a roof and appropriate aid.

If there is no one to help you then you have to help yourself. Get up, take a shower, get dressed and sit down and make a list of everything you need to change, rewrite it and put it in order, then ask your son if he would be willing to help you achieve your goals on that list. If you stay in that bed sobbing and feeling sorry for yourself then no one will want to help you. Showing an interest in getting better is going to go a long way to keeping you under anyone's roof. Shower. Dress. Make a list. Talk. It's a good start.

Hopefully tomorrow will be a better day but you still need to remove yourself from the home; you can't live where you are unwanted because the stress is going to trigger your symptoms all day long--it's always better to do it by your own choice but sometimes life upends us and we must start over. Please contact these people--someone will listen and hopefully get you emergency housing sooner than later. https://www.womenshelters.org/ Trudi

Hi Megan, You are experiencing the rollercoaster of symptoms. We go high, we go low, anytime. My EP has been tweaking my drugs ever so slowly to find a happy medium so that my BP is high enough that when I do have a drop it will not be so low as to make me collapse. We may be at that right now, crossing fingers. I still get drop attacks everyday but I don't drop anymore. I do also see a DPT for core, balance and strength; I would say that PT is equal to the drugs in helping my symptoms especially for dizziness--I was diagnosed with vertigo also, sigh, so vestibular PT is part of that. Over the next several months or couple of years your doctors will work with you to find the best combination of meds and management. It can take a while to get you to your best. You will manage this fine but learning how doesn't happen overnight.

Skin flushing is controlled by the ANS. If we are outside and it is cold and windy our body responds by sending more blood to our cheeks to warm our face. I've come in from a day out in the snow, my feet near white or blue and got in a warm shower--a few minutes later my feet are purple red and stinging too--paresthesia, aka pins and needles, can hurt real bad. Skin flushing is a reaction to stimuli. It is controlled by the autonomic nervous system and ours are haywire. Sometimes our bodies work right and sometimes they don't. Start keeping a diary of your reactions. Take pictures with your phone. Do you have a book of plain white ruled school paper? It's wonderful for showing size and color. On the page right down the date and time, your symptoms, numbers, whatevs for that moment. Put your hand or foot on the page and snap a picture. For consistency try to always be in the same location with the same light. Next time use a clean page for your notes and latest photo. You now have a double diary. You have the notes on your pages with photos to back it up. Showing how you flush, when it happens, events, etc, can help your doctors get to the bottom of this and get you the care you need. Patient diaries are very helpful--especially when you back them up with photos that can't be denied. Good luck!

Dysautonomia saps your energy. I am helped with PT and eating a diet rich in electrolytes. I wish her well.

I can feel it flood into my legs. Take off your socks and look at your tootsies; mine are very very flush. If I lay down on my back and put my two feet up straight the situation can correct itself in a few minutes. Your fingers may also look very flush, your hands may hurt. Blood pooling doesn't have to be only in your legs, it can be in your arms and sometimes gut and pelvis.

I'm 61. I just had my yearly. He gave me a flu shot just like always. My upper left arm was sore for about 36 hours. I can handle that, i can't handle both dysautonomia and the flu.

He saw it right away on the scale pad---I got a compliment for it's awesomeness of arch and toes, then got a lecture about talc in baby powder and that talc causes IUC and that I had better be using cornstarch. And that I am to NEVER AGAIN use baby powder with talc. 'Where are you going `for Thanksgiving?' My SILs, I made ice cream. And then I got interrogated on how to make vanilla ice cream. I was approved as he apparently knows how to make ice cream--he has many talents. And then he hit me with a metal hammer and poked me with sharp pointy things. My numbers were fine enough and so were all my readings. And then we got down to talking; I still don't remember how we got around to it, but I blurted out that I think I have learned enough that I can report a past doctor to the state for multiple reasons--not just one or two, but many; that I am thinking more and more of doing this. We talked about what I thought did and did not happen, he was so patient and told me over and over to take my time. Bottom line is that we are dysautonomics and that none of us should be mocked, laughed at, insulted, refused basic care, turned away, or treated like garbage simply because we have an extraordinary range of symptoms. To do any of that is very unethical and unprofessional. He said he's going to call 'Mike' who is my cardiologist, and who suspected something had happened but I never told him what because I could never put a voice to it. So now the ball will begin to roll. My good doctors now have the erring doctor's name. I don't know where this is going to lead to but I couldn't say silent anymore. I'm not one to judge but peers are. I"m not happy.

I have sensory overload, it's one of my main triggers for symptoms. I also have no sleep cycle. Vibrations, intensity of voice, bright light, movement, etc all contribute to it. I have tested positive for vertigo and last fall had a full gamut of hearing and audiology tests. My hearing is fine, my ears are fine, it's my ANS that is screwy. I have found improvement with balance and core training at PT and I also have learned to avoid a lot of the triggers. I have a script of low-dose 2mg valium for the vertigo--I bite the pills in half and start with one mg. As it's a muscle relaxant it seems to also help with the sensory overload. I am concerned about your security. People or wild animals in your yard when they shouldn't be there without invitation is very uncomfortable and can be dangerous to you or them. Outdoor lights on motion sensors will brighten the yard before someone can enter it. During warm weather you can hook up a lawn sprinkler on a motion sensor--this is a wonderful deterrent, especially to critters. I put a string of brass bells on the gate to the backyard--that gate opens and they jingle loud. Also, if you can and it's right for you, go to the local shelter and rescue a mutt, any size will do for yapping but a bigger dog will be taken more seriously. A few years back, during an icy winter night, I was walking my dog a few blocks from home and I slipped on the ice while crossing a street. I dislocated my hip and couldn't stand but was able to crawl to the curb. The woman who owned the house, whose curb I was now sprawled over, looked out the window and rushed out to help me, brought me inside. It was late in the evening, she said she never looks out the windows but she had the urge to get up from watching the tv at the back of the house and come look out the window at the street. There is a lot we do not understand about the human brain. She could not have heard me, my dog did not bark, I was not screaming but I was in a lot of pain with a popped hip. Yet she was there to help me--her instincts said something was wrong and she did not ignore them. Some of us have a capacity to connect with others on levels we cannot scientifically yet prove, but story after story of people recognizing something is wrong when no one else did are not unknown. Once upon a lifetime ago I was an EMT and it was not uncommon to hear from a loved one or stranger that they knew something was wrong, some heard it, some felt it, they just knew it. I would say you are sensitive and may have a capacity yet unrecognized. I think this is a gift, it's very deep compassion for your fellow human.

I go to PT about twice a week, I've been going for almost two years. It helps tremendously with balance and strength. If I have a Drop Attack I have the strength to support myself now. I was at my cardiologist this morning and we talked about it. I faint, remain conscious, and am still on my feet--my face not bruised and my teeth still in my head. I did joke that I would prefer being knocked out for the recovery aspect because the whooze is awful, but I'm not injured. This is a huge, huge win. Fainting is awful but because of PT I can do it conscious and on my feet.

I have vertigo. It's one of my worst symptoms and it sets off Drop Attacks--I faint without losing consciousness; I can collapse but I stay awake. I don't often get the spins but I feel like the world is moving at a different speed than me, sidewalks elongate and warp, turning corners can seem like going around a banked turn, door knobs extend beyond my grasp. My balance is poor, I feel like I'm going to fall over backwards when I walk up the slightest slope like a wheelchair ramp at the end of every curb. Walking up stairs is worrisome, especially if I am carrying packages--my balance is off and I feel like I'm going to fall backwards. I've added to my pillbox aspirins or ibuprofen so I take it regularly, twice a day. By adding them in with my prescriptions pills for morning and evening I have considerably less headaches and pain. I have had positives on every dix-hallpike they've done, last year the audiologist did a whole series including a vemp test to look for imperfections in the tunnels of my ears. I've looked at images, flashing or still, circles, moving things, had clicks pounding into my ear. Ugh. The VEMP test was horrible--it's like sonar mapping of your inner ear, it doesn't hurt but dang, super willies! I am on my third Vestibular PT script. The first sessions rearranged the crystals in my ear and began my balance and strength training. Each successive script has added more intense balance and core. I can hold myself up if I have an attack. My primary diagnosed the vertigo before I was diagnosed with dysautonomia. All the ear tests confirm that there is no physical deformity causing the vertigo and so it is attributed to dysautonomia. I have excellent hearing for 61 but my balance is not there. The primary prescribe 2mg diazapam (low-dose valium) for symptoms as needed, it does lower the sensations and tone down or remove the headaches. I bite the pills in half--for me one mg seems to do fine, a full pill and I need nappies. There is an OTC product called Bonine, often sold for sea-sickness, that may give you some temporary relief. Vertigo and imbalance are very treatable once you are tested and it is confirmed. A Dix-Hallpike test will rapidly confirm vertigo in the doctors office. It is non invasive and takes but a few minutes. For now, try to avoid areas that are going to give you a lot of sensory overload. Shop at slower hours or schedule at-home delivery to avoid stores which are meant to be flashy and get your attention. You need calm and quiet--stores and businesses don't do that until their very slowest hours. Feel better soon.

So nice to hear you are on the mend and have a plan to keep getting better. Apples are a great food for digestion. Keep healing fast!

Thank you! Puffs on fingernails, rubs on imaginary lapels.

balance, Balance, BALANCE! This is what my cardiologist is always stressing. In heart, mind, body and soul. tweak you water, your food, your meds, your spoons, your hours, your your, your everything. After putting so much effort into being balanced I fall over from exhaustion. #cantwin

I push it up on my arm for typing, I have it pushed up now. Still feels comfy, the strap is very flexible. I am getting very used to it.

I took a couple of pictures showing the closure, mint for size. Overall, the circumference of the band and strap is about 7.5". My wrist is 6 3/4". The strap has some give and is a tad stretchy so it will stay taught. Unless you are very skinny or a toddler this is not going to slip off your wrist like round bangles. I haven't taken it off since I put it on, I've showered, slept, washed dishes, etc and the bracelet holds up very well.

I get similar pains from blood pooling. I do sleep in all sorts of positions that compress my blood vessels, it's the only way I can rest. I find walking to be very helpful in improving my circulation, I also exercise with balance boards which is superb for the circulation in my legs. When it's really bad I sleep with a heating pad and keep a bottle of aspirins on my end table.

We must be brave to stand up to our symptoms and those who would prevent or discourage us from healing. Today I will bravely rake leaves. Tonight I will bravely sleep an exhausted sleep in my bed. #pleasenoblisters