WinterSown

I'm so glad you wrote that. Hope isn't something fake and getting better isn't impossible though it takes a lot of determination. I believe in healing.

My MIL slipped in her bathroom, fell into the tub and broke her hip. She fell in the hospital and didn't tell anyone--her screws ripped out. She had more surgery and fell again and didn't tell anyone again. More surgery. The family has arranged for an aide everyday, including weekends. We're hoping that if she falls in the evening she will tell us or the aide. She is walking better now but is in pain still. Sigh.

If she still smoked we'd roll her a jay 😂

That is exactly how it is! I am so sorry to hear about your son; I hope his symptoms lessen soon.

He thinks so. I'm off many drugs and am down to two halves of carvedilol (25/2=12.5x2) and a half of lisinopril--5mg. I still have motility drugs but the BP drugs are a fraction of what I was on. I am better perfused because I walk and exercise. I try to eat electrolyte-rich foods with every meal. And, importantly, I think I am getting used to the sudden onset of symptoms--I deal with it better. I no longer freak over it. The last time I saw my neuro we talked about me reaching acceptance. Dysautonomia is a bad diagnosis and at 60 I have a lifetime of possible causes--we all chose not to pursue them and instead focus on reducing symptoms. I still love advocacy, reading and being creative. All this together got me better. It has been quite a journey but it's just beginning and it looks better now than a couple of years ago when I was still haywire with out of control symptoms. So, three months it is until I say six. Joy!

There is still a lot to be said for placebo effect. Stong belief can stimulate the body in wonderful ways. Hubs has been getting THC gummies for his 91yo mom. To me they are overpriced candy, does nothing for me, but MIL thinks she has less pain from them. So we bought her all the flavors. If she is happy then he's happy. #OverpricedWin

NO, no No NO! I'm not ready yet for six months! Three, please three. The EP looked at me and smiled so warmly I felt deeply cared for. I almost started to cry. He is the antithesis of everything bad we have all encountered. He diagnosed me over a year ago after I did NOT faint on the TTT, he asked then what makes it feel better. "I go lie down." And that was how I got diagnosed--a doctor who cared enough to listen. He's been slowly cutting down my meds as I get stronger and today I could have graduated to six months between visits. But I am not ready. Maybe physically but my head isn't there yet. "I love seeing you, Trudi, I will see you anytime ever." I got out to my car and I did start to cry as I have when I left some of my other doctors. But this time it was joy and not frustration. It took so long to find good doctors that are also good people. I love seeing him too. Now I am crying again.

Some herbs are very helpful. I grow horehound and when I chew up some leaves my chest clears and I breathe easier--one of my symptoms is Sudden Onset Mucus (my own term) and the horehound does a great job keeping it under control. But I made a bad herb mistake about ten years ago. I had a stuffy nose and sinuses and a whopping headache. I don't know why I did this but I think in desparation you are not always thinking clearly. I took some feverfew leaves and put one in each ear. In a moment my nose cleared and my headache vanished, I felt great. I started walking into the house, went about five feet and thought I was going to croak. Everything was shaky blinky haywire. I instictively removed the leaves from my ears and immediatley felt better. Just because it is natural doesn't mean it is safe. Two tiny leaves had enough drug to nearly send me to the hospital. Ugh. Lesson learned.

I was at PT some weeks back and the woman next to me couldn't keep her nose in front of her own face and leans over to tell me that if I would put essential oil behind my ears I would get better and would not need my drugs or PT. She's telling me scented oil will replace exercise; all the while the DPT was right behind us. Holy Hannah! Later I told him he was better than oil behind ears and I got the best massage of my life.

Sometimes I cannot even swallow water, it takes a lot of maneuvering to get it down. I've made changes in my eating habits like a lot more wet food and drinking liquids before I eat dry foods. It sounds like you are describing dysphagia.

I will PM you.

It was beneficial to both my mental and physical health that I ended my membership in FB POTS groups. So much uncontrolled misinformation and many had seemingly adopted the tone that it was better to be there complaining and being ill in camaraderie than discussing the ways and means of returning to health. I thought the posts about 'my pillbox tower is taller than yours' were self-defeating. And, hide from the anti-exercise harpies who demand a trigger warning in any post that mentions exercising to improve your health. The only dysautonomia group I still visit at FB is an exercise and nutrition group. I need reliable content and education in a more encouraging setting. That's why I am here.

You don't have to have dysautonomia to have parasthesia. Not everything is caused by dysautonomia even though so much is. I am 60 and along with dysautonomia I have a whopping case of all my organs being sixty years old. With me, Is it dysautonia or the effect of natural aging? It's quite often both 😞 Quite a conundrum but it doesn't matter the cause as my doctors are wonderful souls and still treat the symptoms. I have had some relief from physical therapy and exercise giving me better overall perfusion. Aspirins help me with the pain just fine, and if I am also shaking bad I take a milligram of valium on orders of my EP, it's a muscle relaxant. I rarely get parasthesia without some tremors but when it is bad I need the valium.

It sounds like parasthesia. I get it from blood pooling in my extremities. https://en.wikipedia.org/wiki/Paresthesia

I had a VEMP test, too. It's like sonar mapping of the ocean floor but they are mapping the tunnels of your ears. M E G A B A R F

A cast iron pan will do it too. The iron fish will release iron into boiled water but you must activate it with lemon juice for absorbtion. One is good but don't use two. More info at Wikipedia.

Vertigo is not a disease, it is a symptom. https://www.nhsinform.scot/illnesses-and-conditions/ears-nose-and-throat/vertigo

There's an old fever-breaking trick. Get a damp sheet and turn on the fan. It will cool you very quickly.

Have you tried summer weight pantyhose? You can cut the feet off of them if you want. Right now I sleep in an old cotton pullover dress and use a lot of powder.

Your primary can take the wax out on the same visit. You can give them an assist by using a wax softener a day or two before going in for your visit. You will get better, vertigo is not a hopeless condition.

Sounds a lot like vertigo symptoms--your surroundings can move but you don't, ugghhh. You don't have to have spinning, one of my symptoms is the ceiling coming down closer and closer, or the sidewalk warping and bending. Your primary can give you a Dix Hallpike Test right in their office and determine immediately if you have vertigo. My primary diagnosed me and sent me to PT for Vestibular PT. What an awesome change. The DPT corrected the problem and then focused on my balance and gait. Definitely call your primary and describe your symptoms--vertigo is horrible and you shouldn't have to tolerate the sensations because they can be corrected. I hope you feel better soon.

Visit websites to learn how to cook for your freezer. I steam batches of mirepoix and portion it into half-cup amounts and freeze in baggies. I also keep cooked noodles or pasta, rice and oven-roasted potatoes in the freezer. I have cut up frozen meats ready to defrost and add to the pasta or a salad or to toss onto a sandwich. Something like a meatloaf can be prepped in less than ten minutes but it makes a lot of servings. I try to get a few meals out of what I am cooking. It's just me and Hubs but I still cook dishes that serve four or six so I can have leftovers. I bought a few of these used at Smile.Amazon--what a great treasury of freezer recipe books. I also have my benefactor set to Dysautonomia Information Network :-) One of my faves is getting sale fruits and cutting for the freezer, placing on parchment in single-layer, well spaced pieces and freeze. After they freeze into a bag to use for smoothies. I can buy bags of frozen fruit and it's great but if I get a better price when I'm feeling energetic I've got smoothie chunks for a song. I just had a Banana Mango Apricot smoothie made with frozen chunks I prepped myself. YUM

My first sign that something was terribly wrong with my body was getting a fissure. It hurt like insane pain, it never healed and had to be closed by a butt surgeon. Being constipated can change to being impacted in a short amount of time. It's a hard time for you, literally, to get yourself unblocked by an enema nurse in the ER. It can be avoided if you take care. You can generally get sooner relief--usually within 20-30 minutes--with glycerin suppositories. You may have to use a few in turn to get things sufficiently cleared to where you no longer are in pain or uncomfortable. I keep a tub of them in the bathroom cabinet, when it gets close to empty I buy more. Glycerin saved my butt on many an occasion.

I do the kneading with a stand mixer. I am looking into some of the bread recipes that you don't have to knead long or at all. I make cake in the food processor, put it all in and whirrrr, then into a loaf pan or snack cake pan because in the food processor the texture is more dense, like a pound cake. Bake it and slice it and put something creamy on top. And coffee. Must have mugs of coffee on the side. I am a sucker for used cookbooks. I order them like-new or very-good off of Amazon or I get them in thrift stores. I have two books coming for a song, one is chocolate and the other vanilla, I like them both but Hubs is a vanilla freak.

I keep hearing about this show. I must look at videos.