WinterSown

I am so sorry, you and your girls never get a break :-( I hope she can begin feeling better soon. I did find some information with a doctor giving a thorough lecture in a video. https://www.dystonia-foundation.org/what-is-dystonia If you don't have a DPT yet then one may be in her future--physical therapy is suggested to help. Many centers have a pediatric DPT on their staff so she will get right care. https://www.dystonia-foundation.org/living-with-dystonia/non-drug-therapies/physical-therapy My very best hopes and wishes, Trudi

I do PT twice a week for the last 18 months, I do a lot of training and sometimes with weights--I was walking around carrying the two 45 pound plates. The problem is that I was just DXed with a bunch of burst and bulging disks in my neck so we stopped doing anything with lifting weights for now. I loved using the bar and pulley weights but that's on hold for a while.

I absolutely have this 100%. I have Early Satiety which wipes out my appetite and my thirst. Presyncope is always greatly worse when I haven't eaten enough. I haven't read up on it yet but I think it's more than hypoglycemia throwing a wrench in the machine, I think it may also come with a depletion of electrolytes--if I'm not eating or digesting well I'm not getting my electrolytes. Just a little fruit, bread and cheese will lift me out of it but taking that first bite is hard.

I was reading up on this last week. It has some potential but YMMV. What is Butcher's Broom Ruscus aculeatus (Buther's Broom) as potential treatment for Orthostatic Hypotension.

I went for a routine Bone Mineral Density test yesterday. My last was three years ago, this about when most of my symptoms were starting to show. In three years time I have lost about 8% bone density. Dairy is my go to protein so I'm curious about if I need more calcium over what I am getting now. And the paperwork also says I may have low Vitamin D levels. I don't get out enough (no kidding when you don't want to leave your house) and when I do that all lotion I wear still has sunscreen--I'm not getting enough sun exposure. Pleh, who needs all this too? Osteopenia is the stage before Osteoporosis and this puts me at a risk for bone fractures if I fall. Vertigo and tripping are some of my main symptoms. I've got my three-monther coming up next week with the primary, I'll hand him the paperwork but I want my cardiologist to give a second opinion on treatment options. It. Never. Ends.

My numbers jump around all over the place--I am totally unstable. My cardiologist, EP and neuro all tell me my ANS is wonky. You can have multiple symptoms of dysautonomia without the magic combo showing up on diagnosis testing day, that does not mean you are not a dysautonomic, it just means your numbers aren't stable. I didn't faint on the TTT but I still got a diagnosis from an EP who looked at my history and asked all the right questions.

I struggle now with flares of early satiety. I suddenly lose my appetite. I have to be really careful with motility and not eat foods that take too long to travel through me otherwise have little desire to eat or drink anything.

Exercise exercise exercise!!! And drink lots of fluids. and eat foods loaded with electrolytes.

Exactly how I feel, to me it's like a dissociation-vertigo hybrid. I can't remember how many doctors I have told I feel like I've had a half a glass of wine too much. The EP cut another drug yesterday, now I am off norvasc and we'll start cutting down the prinivil next. Last month my husband and I took the train into the city to see a show and while we were on the train I told him that I wished we had worn matching outfits. Same jacket and shirt with jeans or chinos for both of us. He practically sneered that I wanted us to look like twins but then he got it and understood that I was concerned about getting separated from him in a crowd. If we have on matching outfits it's impossible to forget what the other is wearing.

I was on Atenolol, then switched to carvedilol that has now been cut in half. I have felt no difference with any of the drug changes. Good luck with the neuro. I love mine, she helped me build my own educational and creative therapy program to assist the short term memory, dissociation and fog problems. I went through an assortment of brain scans and memory/logic tests so they would know exactly where the problem areas were prior to setting up the neuro therapy. Memory testing can take up to four hours but it's worth it as they identify your cognitive deficits and strengths. I went to Cushings Institute in Great Neck, NY for the testing. Next time I see the neuro I'll be bringing up that I've noticed sensory overload is now also triggering for and dissociation--these things wane and then swing to the forefront to wane again. I recently went off all supplements and now get my nutrients entirely from the food I eat and drink. I started to have more clarity with a few days of eating smarter.

A couple of months back my cardiologist took me off all supplements, told me I had to get everything from the food I eat and drink. It's been an adventure in eating but I am feeling much better. I choose a lot of fruits and veggies that are high in electrolytes as the basis of my meal, it's been fine so far and I feel like I have more clarity in between attacks. Another great tip he gave me was to scrub my face with epsom salts. Just moisten your palms and touch them to the salts to take up enough to give yourself a scrub until the granules start to dissolve--like 20 seconds maybe--then rinse. The magnesium in the epsom salts is taken in through your skin, it's an almost instant energy boost that lasts a few hours (YMMV). As a bonus, it's a wonderful facial too. My doctor is awesome :-)

Three years ago I weighed 60 more pounds than I do now. Losing my appetite is part of my symptoms. I was greatly out of shape. Are you working with a PTD? If you are very complicated, and who of us is not, you might consider to begin a reconditioning program with a physical therapist, your doctors can give you a script. I do not have the capacity to put together a program for myself that takes into account three different PT scripts from three different doctors. I have benefited from being physically brought up in very slow increments while the trouble spots are getting their due. I do get symptoms at PT, generally I just zone out but sometimes I want to hurl or hope I'm not incontinent, I've had drop attacks there. I take a break as often as I want or when the doctor tells me to take a break. I never force myself to do anything because exercise is incremental, if I feel I need to do less I do less, if I want to try to do more I will try to do more, but I stop before it becomes so displeasurable I don't want to go back. I have three different types of balance boards here at home, Easy, Not Easy, and Crazy; depending upon both my energy level and tripping capacity I get on a board of my choice. It's still a challenge but it's still fun--I never take fun out of it. I'm a sucker for cheap, bizarre-print leggings, was wearing a skull head print this morning. Wish you luck.

Please call the doctor's office ASAP and ask to come in sooner because you're not responding to your medication. It's more than reasonable to ask for a sooner appointment so they can adjust your meds now instead of months from now. When you have a sharp change in your drug reactions is can be worrisome and should be addressed sooner than later if just for your piece of mind, adjusting your meds usually gets you feeling better sooner. Which I hope you do.

Happy to have you here.

Put the monitor down, get on the bike and ride for the joy of it, stop before it's not fun anymore. Tomorrow, put the monitor down, get on the bike and ride for the joy of it, stop before it's not fun anymore. Wash. Rinse. Repeat. You want to focus on this making you feel good--favorite music, comfy clothes, something tasty to sip. Stressing yourself out with numbers is self-defeating because stress triggers symptoms. Enjoy the fun of it.

I have Drop Attacks, it's fainting while conscious. My legs lose feeling and down I go. PT has helped a lot with making me stronger to hold myself up if I am near a chair or counter to grasp. It always appears to be accompanied by sudden bradycardia.

I just read an article on that this morning: http://allwomenstalk.com/7-steps-to-getting-dressed-in-a-hurry

I will let you know. The sign up is next month but the classes don't start until March 19. The show was our Christmas show, we don't exchange gifts anymore we get tickets and go see something instead. It takes some planning but we are able to manage with apps. I get Drop Attacks, which is fainting while staying conscious (who knew!) but I don't often drop. I am strong enough or I subliminally pick up the pre-signals and I can steady and hold on--that's some of the PT I do. I will look into autogenic breathing, I lost my sleep cycle three years ago. I look like a raccoon today.

How lucky you are that you can teach, it's a great way to interact and get out. I know Chair Dancing, it's one of the first exercise videos I bought eons ago. I remember how many muscles it awoke. Wow. ow. I've been doing PT for over a year so I think I'm fit enough for it but I get sudden bradycardia, I think the chair is a good idea. This past weekend Hubs and I saw Shen Yun Dance Theater in Manhattan. It was extraordinary show, they spoke about Falun Dafa which they practice--there was even dances about it. This seems like a reasonable ideology with much matching my neurotherapy, and they have exercises to begin too. Mind and body. They have five exercises here which look very simple, not too much exertion: http://en.falundafa.org/eng/html/flg2016/flg2016_4.htm

My EP tweaks my drugs, my cardiologist tweaks my life, my neuro works on my perception. The cardiologist is the boss, he has now suggested I start yoga as a means to find balance--not only for my wobbling-trip-anytime body and swinging symptoms, he wants inner harmony for me too. We just got a continuing ed flyer from the local school with an eight-night weekly course for Chair Yoga. Participants take the class either seated on a chair or standing behind a chair for support. Class includes breathwork, warm-ups, stretches and poses and conclude with a final relaxation. It's supposed to increase strength and flexibility, improve balance and range of motion. I am supposed to leave feeling peaceful, calm and energized (that's an oxymoron.) Balanced. sigh. I think the chair is a benefit, don't know if I would stand or sit but it's better than having to get down and then do a full stand back up from a mat. Has anyone tried Chair Yoga? It seems very passive and not too sweaty. I never heard of it but it may be fine enough for dipping my toe into the yoga pool.

I have a squirt bottle of white vinegar I keep on the kitchen sink. I put a few drops of dish detergent in it. I squeeze out a blast onto anything that needs a fast wipe-up. Kitchen vinegar is 5% acetic acid and is a natural way to kill a lot of germs, and it makes quick work of wiping up the stove and counter tops. The vinegar scent doesn't last long. I am now starting to declutter my house. My goal is to toss out one black bag of junk every week, more often if I can. I ask myself would I buy this in a thrift store? No. Would my son like to inherit this? No. So in the black bag it goes. As I toss out junk I may think about some of the memories I had with it but I will make new memories with less stuff to deal with. It's been more than something that makes housekeeping easier simply because I will have less to deal with, it's also a very healing process. Sensory overload is a big trigger for me--less clutter equals less overload and I find things faster too knowing what I have and where it is kept. I'm transitioning from having a life where I could use and enjoy all these things when I was younger and without so many symptoms. I am 60 and we are approaching retirement and I think downsizing is appropriate now too. The house looks tidier and the dejunking has been good for my head.

I have been able to taper down to only a few doses a week, and only as needed. I have vertigo and take valium for the symptoms. Sometimes I must have that medicine. I do think that a combo of neuro and physical therapies with exercise have helped to reduce the occurence of the vertigo attacks. You have to find ways to reduce the need for the dosage before you reduce the dosage. Slowly cut back as you lose your need for the doses.

Eating a nutritious diet and exercising are starting to do more than show, they are starting to have genuine physically beneficial effects. It's been almost two months since I gave up vitamins and supplements for real food and it's working, I feel a lot better. I got up this morning, pulled up my pressure socks and they went up without a struggle. My leggings felt loose too. Just by eating better I dropped a few pounds without trying. Win. I went out to walk the dog and all of a sudden, without even planning or thinking about it, I started running down the sidewalk with the dog at my side. I felt like I did 30 years ago when I used to run when I lived in the mountains. After a half-block I went back to walking, not because I was tired, but because I need to work into this a 1/4 block at a time. I have no idea why I suddenly burst into running, it felt so good, I felt so good, and I had the wisdom to quit before I needed to quit. For the rest of the day I've also had a lot of energy. Just juiced up the phone and headphones and am gonna take the dogs for their night walk. I'm not wiped out. Maybe tomorrow I will be but I've enjoyed having a good day today all day long.