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WinterSown

Volunteer
  • Content Count

    617
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About WinterSown

  • Rank
    Advanced Member
  • Birthday 08/23/1957

Contact Methods

  • Website URL
    wintersown.org

Profile Information

  • Gender
    Female
  • Location
    Long Island
  • Interests
    Winter Sowing, metadata, learning new things everyday.

Recent Profile Visitors

1,506 profile views
  1. I was went in kinda psyched because I've been in PT for two years and was looking forward to 'being impressive' on the treadmill--or at least much better than three years back when I had the last stress test. No, not for me, they said they were doing it with drugs--doctor's orders. Harummph! They gave me an injection and I suddenly felt very weak and brain-fried. Blech. Ugh. Skeeves. It wasn't painful but it was weirdly uncomfortable for a few minutes. It was a long afternoon of laying down under a machine that takes pictures of your heart. On the way back I stopped for coffee and a bear claw. I had to have some satisfaction to end the day. https://www.nyuwinthrop.org/nuclear-cardiology Best part? I have to remember for the next 24 hours I'm radioactive!
  2. I think exercise is as good or better than drugs for helping you with your symptoms. I do walk and exercise daily and do PT twice a week. I am working on improving overall strength, core, and balance. It's super helpful--I feel better afterwards because it is good for circulation. Good luck to you.
  3. You may want to see an ENT and have your ears checked for abnormalities. I've met some wonderful ear doctors along the way. ENTs are very sympathetic to patients with vertigo and balance issues and will set up the right tests to determine cause if there is something physically wrong. They can also prescribe PT to help diminish your symptoms and get you strong enough that you can catch yourself and not careen over and smash onto the ground.
  4. I was diagnosed with vertigo before I was diagnosed with dysautonomia. In fact, it became a significant part of the diagnosis. My primary made the initial diagnosis with a Dix Hallpike test right in his office. I do have gait and imbalance problems, I have short term memory problems and sensory overload, especially to vibrations and loud sounds. The cardiologist, EP, neuro, primary, ENT and DPT are all working as one team to keep me from tripping and falling over, nobody denies vertigo is part of my symptoms. The good news is that it does get better with treatment. I go to physical therapy for balance and core, I make an effort to reduce my sensory overload triggers, and I have a script for low-dose valium (diazapam 2mg) which is a muscle relaxant. I take a half-pill to start and it's enough to take the edge off of my reactions to vertigo producing stimuli. For sensory overload reduction I shop stores at their slowest hours or have most things delivered, I wear shades when it's bright or I am in a brightly lit store, and I also can add sound-muffling headphones which I sync with my phone--I put on music just loud enough to cancel out the sound of voices around me. Good luck. Vertigo is an awful feeling but you can get help for it. PS...there is an OTC motion-sickness drug named Bonine which you may find helpful in the meantime until you can get a diagnosis.
  5. Thank you Ellen for giving me a reason to not give up--DINET means so much. My doctors think it's healing a lot of my hurts.
  6. Fatigue is a symptom. My EP added Mestinon to my drugs six weeks ago and it's been a big help. I saw him yesterday and asked to increase the dose so we doubled it. I drink a lot of coffee, addict level, but it helps. If you can find a stimulant that gives you some extra alertness give it a try but a little at a time.
  7. Valium is a muscle relaxant and your digestion is helped with muscular contraction. V is my primary sensory overload drug. One milligram is all I need to take the edge off of too much sound or bright light. Ugh. I have to take a pill before I go into a supermarket during busy hours, it helps in crowded restaurants but say no when the waiter asks your drink order. Valium and wine leave you melted under the table. You're also not driving because it will slow your reactions. The biggest help I got for dyssynergia was a script from my EP for Mestinon. We were not using this just for increasing my energy but WOW, it had a wonderful effect on helping me get back to normal. I used a lot of glycerine but I rarely need it anymore.
  8. I'm sorry you are feeling these symptoms. There is no pass or fail on the TTT. It just records reactions. These numbers and your history will help build a diagnosis. I never fainted but I was still diagnosed. There are many forms of dysautonomia. My numbers are unstable and I sometimes swing into POTS but generally OI and NCS are my biggies. My EP calls it my CardioNeuroVasoVagally thing. It took some tweaking with the meds, learning to avoid triggers, eating right and a little exercise every day. It doesn't happen over night but you will get better.
  9. The management is towards lessening the symptoms. One of the biggest assists for me come from eating a healthy diet and focusing on foods that are rich in electrolytes. Walking is a great exercise that will help with elimination. In the beginning of my symptoms I lost 60 pounds without trying and I needed surgery to close a fissure. Ugh.I suggest that if you have any problems with your digestion or passage that you do see a gastro before you need to see a colorectal surgeon. Once we realized how dysautonomia was effecting my digestion I was able to make some changes and start improving. My cardiologist, EP and neuro do all help me with these symptoms, and all the rest of them too. This is a treatable condition--it can take a little time to learn how to limit its effects but that will happen.
  10. That sound delicious. Meatloaf is like Chicken Soup. Everyone makes it their way and it's all good. These are a freezer staple for us nowadays.
  11. Meat Muffins! Meatloaf made in muffin pans ready to go into the freezer. I will bag them after they freeze. We love these. Just use your favorite meatloaf recipe. Bake at 325F for about 35 minutes, I basted with a squirt of ketchup. Ground meat was on sale and I bought a three pound pack which usually makes 24 muffins. These are also excellent with ground turkey instead of beef.
  12. Thank you thank you. Great lyrics and performance; and the tempo is perfect for that swap event too. It was very laid back and very positive. I met honey people, and ancient grain people, squash people, and gardening for therapy people, asian beetle people, park management people, and folks who are involved in backyard and microfarm agriculture. Amazing day. I am glad I went. I'm going to save that song to my favorites!
  13. Today I was brave. OMG, I'm still feeling up and fine and it's great. I was invited out to plant swap at a college the next county over. I gave away seeds and schmoozed all day from my little demonstration table. My big sister came with, she drove and she could talk as well as I could. I had a lot of positive feedback and really spent the whole day feeling 'juiced' on adrenaline. Yesterday, I spent the day resting and drinking water and coffee, eating things mostly good for me. I also made sure I remembered to take all my doses of medicine last week and exercised everyday. I planned for the day with the best of management techniques I knew and made it through a long day. I am grateful for my sister who helped make a long day possible, and I am grateful to myself, in a way, for saying yes and not turning down the invitation to the seed swap and discussions. For my neurotherapy I'm supposed to do different things in different places and have fun doing it. This worked great. win Win WIN!!! Dysautonomia too often robs us of the lives we used to live--low energy and fainting are a great incentive to stay home. I can't let d'mia take everything. I made the decision that I would do this event with or without help, and with or without symptoms. I was going to go. Planning and a partner made it possible to have a wonderful day. This was the first event I have done since my diagnosis two years ago and I was able to talk and answer questions without brain fog or presyncope. Puffs on fingernails, rubs on imaginary lapel. I could have turned down the invite and stayed home--up to Friday night I was thinking of cancelling. I was afraid I would faint in front of a crowd,or have IBD problems, or paresthesia, or disassociate, or any of the other problems we can experience. I was gonna back out but I thought that doing so might knock me down into a hole of deep depression, and that's not happiness, I am supposed to have more fun and joy--doctors orders. Today, dysautonomia didn't win. Today I won! Came home with a canna root too so that's great. I have no idea what color it will bloom but I don't care. Today I did something I didn't think I could ever do again so happy happy joy joy. I do expect to pay for this day, I'm not unrealistic...tomorrow or the next I expect my energy will be gone and I'll snooze for ten hours. Oh well. Such is life. 😉
  14. Should not be a problem to be relieved from serving. The courts are very concerned with their jurors, they are very sympathetic.
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