Jump to content


  • Posts

  • Joined

  • Last visited

Everything posted by WinterSown

  1. I lost my thirst when my symptoms came on, lost my appetite and 60 lbs too. I can eat better now but thirst is still a bit problem.
  2. Yes, there's a weekly or yearly charge. We first started with the weekly delivery charge then opted to pay for the full year which gets us free deliveries all the time. Some of the grocers may have specials where if you purchase a minimum amount you will get free delivery. They all have their gimmicks. I just finished filling my cart there. It took less time this time because I am getting better at ordering. I use PeaPod by Stop N Shop. I think a lot of them have similar rules for membership. https://www.peapod.com/home
  3. I've been getting delivery once a week now for a while. There isn't a week that goes by I don't buy three of something I don't remember clicking on, but that's happening less. I've learned to sort for specials and stock-ups, it does make cents, too.
  4. I've been knocked out five or six times by doctors in the last four years since my symptoms began. I've never had a problem. Scoping is quick, your biggest worry is that if they are running late you may not be eating until late afternoon but that can happen.
  5. Heat and sweat can also effect your numbers--summertime is sweaty time 😞 You can try to eat more foods that are potassium-rich, it's a nice list and you probably already eat these foods--so eat them more often. It's all yummy stuff. https://www.webmd.com/diet/foods-rich-in-potassium#1-4
  6. Yes, that's fine. The benefits of exercise are accrued.
  7. You increase the setting to make it a little more difficult but you don't increase the time until you are quite comfortable at the higher resistance. I don't use a rower but I use a resistance bike at PT where they slowly build you from beginner with no resistance to 'better' with resistance. Most important is to not overdo it so that's why you don't increase the amount of minutes when you're just starting to strengthen. Always stop before you feel it's a drain because you will get turned off from it--go at your pace and move to higher levels whe you think you can handle it. Also, go back to lower levels when you need to. Some days it's better to set it to three instead of six, we all have extra-low energy days--it doesn't make sense to do a lot when you can really do just a little. Listen to your body and keep at it! I truly believe that exercise, in any form, is going to increase your stamina and strength. You look better for it, too.
  8. I take a benadryl to knock down paresthesia. This is a thousand times better than getting lockjaw from tet. I've had lockjaw and it dislocated at the left side under the ear, it's super super painful. You can die from tet, if you haven't had a vaccine in over ten years they'll give you one because it is a very painful death and they don't want that for you. You're lucky that it's only pins and needles but it is temporary. Feel better soon.
  9. If you don't get outside you can't see the fun world around you. Catching a bee fanny in a photo is a joyful thing.
  10. RLS feels like you gotta dance or get up and walk or do anything to de-energize your legs. I've not experienced lightning bolt pain with RLS but I have had that with sciatica. Definitely see your neurologist, if you don't have one ask your cardiologist for a recommendation and they'll hook you up with someone who will also understand your dysautonomia. Sciatica hurts like mad but it it very treatable, I am sorry you are hurting and I hope you can get some help soon. An epsom salts bath and aspirins may give you some relief in the meantime.
  11. I like Bentyl for calming down my gut when it's flaring. It doesn't work immediately but in a few minutes I can feel it all settling down to a dull roar. It's not perfect but it is a great improvement. I have not found it to effect my vitals in any way. It works. https://www.webmd.com/drugs/2/drug-5245/bentyl-oral/details
  12. I just got back from PT. Not only does the exercise make you calmer but I've found that when I shower afterwards I am less likely to faint in my shower. I do believe the innervation is what the deciding factor is--I am just better oxygenated and stronger to withstand the sensations and not collapse from the steam and heat in the shower. It's happened a lot more than once. I am really sold on exercises being a major management tool for dysautonomia. All my doctors have told me they will keep me in PT for as long as I need and that's forever. Cool beans.
  13. My cardiologist has me loading up on electrolytes from the foods I eat and drink. It's not just about only sodium. You need them all. I saw my neuro last month and we talked about the weather. Summer heat and humidity increases our symptoms--it just magnifies and cranks up the symptoms. Staying inside with the curtains drawn under a ceiling fan with the AC blasting while I'm drinking a watermelon smoothie and eating a bag of popcorn is how I'm spending most of my summer. Yippee. Pleh.
  14. Do you have something to take that soothes you? It could be medicine like diazepam or perhaps just a cup of herb tea and rocking in a rocking chair, maybe listening to your favorite music or writing poetry to take out some of the anxiety with you pen. I am sorry you are going through this. I hate these surges and usually wind up doing any of the things I've written or I watch videos of puppies and kittens and other baby animals, etc. I have found I have less of these surges if I walk regularly. Each night I do a few blocks--it calms my head and my body. And the fresh air and getting out of the house help as well. Keep a diary of your attacks, write down what happened that day. You may begin to see a pattern of triggers or not. Bring the diary to your next doctor appointment and show what you've notated. Doctors are keen on note takers. You can reduce these attacks but you have to pay attention to reducing triggers. I hope you can get over these episodes quickly.
  15. I've started feeding the birds squirrels and we love their antics. I put out a bag of niger seed for the finches and the first day the squirrels chewed a hole and picked the bag up by its bottom and poured the whole thing out! Again, no camera, but wow just the same. That's some smart squirrels out there. I tried putting orange halves on a platform feeder for the butterflies but the squirrels stole them too.
  16. My primary sent me to his cardiologist who introduced me to the EP and the Neuro. All three are under the same roof at the same cardiovascular center and they're fifteen minutes away. I have a great team of doctors caring for me. They listen and they help make me better.
  17. I've been converting my veggie and tomato beds over to pollinator-friendly plants. I'm enjoying the flowers and so are the pollinators. So nice for a butterfly to come by when I have a camera at hand. I walked very slowly up to it so it wouldn't be skittish, I took a video which I had to stand very still for. 20190630_140259.mp4
  18. I am very sympathetic, this is one of my biggest triggers. It sounds like you have sensory overload :-( If I have to go into a crowded noisy area I must wear my noise-cancelling headphones and sunglasses. I usually put on my favorite music to drown out the crowd sounds. When it's really bad I take 1mg of valium, too. I take low-dose valium to help my vertigo and it also does a great job on reducing triggers like bright lights, vibrations, voices that vibrate your spine, etc. Sensory overload at a busy transportation hub is unavoidable but it can be reduced just by small effort to shield yourself from that environment. If you can arrange it, study the flight schedules to pick quiet-time flights and travel late-night through early-morning to avoid a crush of people. When you dine out use an app like OpenTable so you can get a reservation in minutes.
  19. Thank you! That was two or three years ago, I lost a big chunk of weight when my symptoms came on and I am getting good at posing while sucking in my cheeks. Lipstick helps. I've been putting on moisturizer right after every shower since eternity started. I credit my cardiologist for improving my complexion. One of the first things he did was take me off supplements and tell me to get it all from the food I eat and drink. I'm not perfect, I put down a jar of popcorn jellybellies this week. I was better and ate lowfat real popcorn for a snack today. Today I've had citrus juice, melon, tomatoes, matzo ball soup from the diner, and I made turkey burgers (put eight in the freezer) tomato salad and salted tater-tots for dinner--I'll have a bowl of cereal and milk later. It's actually quite easy to get in enough electrolytes. I still struggle with getting enough fluid but I've got electrolytes in my kitchen. I shop for them and so they are here to eat. I just snacked on a fat-free yogurt with bananas and strawberries on the bottom. Ahhh, the yummy taste of electrolytes. Glorp. I have some balance and gate problems, I have vertigo, and I get Drop Attacks at the drop of a hat. I do exercises on my bed with my stretchy strap. It's a jelly resistance thing which stretches and the more you stretch it the more resistance. I do a few with it around my legs--my knees and then my ankles and just spread my legs--I'm on my back and my feet are up in the air (draining!). When I started just three reps would make me want to cry. I was a seriously badly out of shape person trying to fix a lifetime of good food and not enough exercise to burn it off. But I kept at it because I needed it, it hurt in the beginning but the reality is that it keeps me innervated and strong enough to hold on and stay on my feet. I also use balance boards but I am between a table and a counter so I can grab hold if I slip. I haven't slipped in over a year but I'm in the same spot still--just in case. This is an older video and geared towards people suffering from cancer, but is excellent for anyone who is laid up or in poor shape and needs to start slowly. I am planning on walking the dogs later if the weather holds.
  20. This sounds very familiar, I went through something like this last year. My EP slowly took me off of most of my heart medicines. I was getting stronger because of exercise and walking and so I didn't need such heavy doses. This may be a sign that you are getting better--talk to your cardiologist and see if you can cut some meds.
  21. I find joy using the phone. I use apps to take me to museums, quiet dining, travel. Best is dinner reservation apps so you don't have to stand waiting and faint before they hand you a menu. I use the phone to transmit music to my headphones that I wear when I go anywhere public and it knocks down on the sensory overload. And, to get out of the house, I do digital photography. I love my phone. I hate my outlook account, though.
  22. My cardiologist doesn't want me on supplements, I have to get everything I need from the food I eat and drink. Initially, while I was learning, I used WW online because it has always been geared towards learning nutrition. I thought would be a while before I started to feel better but it was within a couple of days. Eating a balanced diet, which was an upgrade in the amount of fruit and veggies I eat, made a huge difference in my energy, my eyes look brighter and my skin has some more color. I don't have huge bags under my eyes anymore because a better diet seems to help me sleep better too. I always eat food with electrolytes each day and I don't forget to drink milk or eat cereal and milk. Milk is loaded with electrolytes--if you can't digest cow milk then the nut milks are just as good for that. https://www.healthline.com/health/fitness-nutrition/electrolytes-food
  23. Might be stress or sinus also, I don't know your location but we have had rain and rain and rain for almost two months and everything is blooming like mad--great weather for plants but not so much for those of us with seasonal allergies. If the aspirins stop working talk to your neuro.
  • Create New...