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About TWynnB

  • Birthday 04/19/1971

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    Central PA

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  1. My cardio switched me from propranolol (because of hypotension) to pindolol. He claimed that it wouldn't affect BP as much. It made me horribly nauseous at first, so I had to start very low and work my way up. Turns out for me, it caused just as much hypotension, so I switched back to propranolol for a few reasons. One being it doesn't take care of tremors as much, which I have between adrenaline surges and my spinal cord compression.
  2. I'm considering one as well. I have read to not get one of the jewelry like ones, because they're not noticed at a glance. EMT's aren't going to spin around cute bracelets to make sure they're not med alert bracelets instead.
  3. That is awesome for Tyler! I do have a question though - did you try to wean him slowly off the clonidine under doctor guidance, or just discontinue it? I've seen a lot of stories of rebound high BP of people abruptly discontinuing it. Just a thought.
  4. My background - I had something 'wrong' with me last late fall - and going into my GP's office, my HR was 118. I honestly didn't think much of it. I found out I had cervical myelopathy from cord compression, with urgent surgery on 12/8/14. My HR under anesthesia never went below 120. The HR issue didn't resolve post operative, and then a friend in a professional support group pointed out I had a lot of symptoms similar to her, which included the HR, tremors, and hyper response to adrenaline. I had always stayed so cool under pressure! Upon her recommendation, I did a poor man's TTT on myself. My resting HR was 98. At 2 minutes it was 116, 5 min 124, and 10 min 139, where I was breathless by this time. I also have GI issues (I'm the only cervical surgery that lost weight, LOL). I was officially diagnosed with orthostatic hypotension by a cardiologist on 7/15/15. My BP is never as high as it was there....somewhere around 130/80 laying down, and it dropped to around 100/70 on standing, and I was dizzy. In May, I had made an appointment with a neurologist 3 hours away that was listed on the dysautonomia international website (but not this site) because she was a neuro, and I wanted her to address my myelopathy and the probable POTS. Unfortunately, by the time I saw her 9/1/15, my spasticity had gotten much worse and was a bigger priority than the POTS. My HR is controlled fairly well by the propranolol that I am on. I must admit, since I am on personal disability insurance, it helps to have the diagnosis to help justify staying out of work (although the spasticity right now is more than enough!). She was great with my spasticity/neuro signs, and ordered an MRI (which was done yesterday and normal, I honestly expected that). She did tell me I had autonomic dysfunction from my cord compression (I knew that), and that I *couldn't* have POTS, that they were pretty much exclusive of each other. She did say that people with POTS had idiopathic causes - meaning, they don't know why. I'm thinking she's just outdated and uninformed concerning POTS, but am I wrong? I am debating finding someone else that can test me and be done with it - I can ask my cardio (I have a recheck next week with him), although I know he doesn't test for it. I do have an appointment with someone in March, but I am supposed to be back to work by January - although that idea is looking dismal right now. Also, does anyone else get spasticity with dysautonomia? I am on baclofen and now diazepam as well to try and control the spasticity. I assume that all of that issue is from my cervical cord, but my friend did say she is hyper reflexive, and I think a few other people on here have said the same thing. Thank you!
  5. I'm sorry you had to go through this, it is amazing how attached we can get to a pet. Unfortunately in this case, I am a vet...and have done this hundreds to thousands of times. My first of my own 3 years ago was my 3 year old border collie mutt that had cancer. Talk about crying like a baby! I put my 18 year old cat down with cancer in March, and just brought home meds for my 14 year old cat with cancer. She doesn't care right now, but it will be soon... What I tell my clients is that I truly don't believe animals were meant to suffer - if they were on their own, nature would've never let them reach the point we get them to. It is our job to end their suffering. In my heart, I believe it is a gift to them to pass when they are truly hurting. Hugs to you.
  6. Interesting. I did just google it, and wanted to make others aware there is no sodium in it, and sucralose. And stevia, but I like that . I recently started making my own. Found cranberry concentrate - just cranberries, no sugar, no nothing else, which is a good dose of potassium, and I add salt, stevia, water and ice. I've really enjoyed it, will soon try other flavors too!
  7. Ah, Kris...I feel for you. Not necessarily in the horse aspect, although I used to have one, and my "surrogate mom" just gave me a gorgeous bracelet weaved from his tail hair. Just a few years ago, I was sad realizing I'll never have a horse again, more due to my career and family, I wasn't sick yet. Now? You wouldn't want me on a horse between my spastic muscles and my balance issues. I have cervical myelopathy as well (basically I'm a spinal cord injury patient), and like you, my dysautonomia is more mild. But put the two issues together and I'm a bit messed up. I actually just started a medical leave of absence from work, and I can't tell you the last time I took a sick day. I'm a veterinarian, so it's losing a big part of who I am. My hope is that I'll be back in my career in 3-6 months, but no promises there. I just went to a counselor for the first time last night, and she asked me what keeps me centered now. I can't do things I used to enjoy due to my arm and leg fatigue...I can't run, I can't hike, I can't do much upper body. I looked at her blankly. She said I need to find a way to stay grounded and to relax. (LOL...that's why I'm going to her!) I do need to re-identify myself, and I am just not sure where to start. And then, I should/may get some motor improvement. And will my dysautonomia get better? I don't know. It's a tough road. I wish you well in your journey. It does help a bit knowing there are people you can reach out to in similar circumstances.
  8. My beta blocker (propranolol) helps greatly with my adrenaline rushes. I work in a high paced environment, and it was becoming a problem until I got on meds. I almost get anxiety issues when the beta blockers aren't working well, but not paranoia.
  9. Pulsatile tinnitus I get it too - not much, now that I'm on beta blockers to bring my heart rate down.
  10. I have problems with cold extremities, especially my toes. I was wearing 2 layers of socks, one of them wool blend, in the 80 degree weather yesterday and they were still frozen!
  11. I was just pretended I was at a techno dance club while having the MRI done. Except I didn't dance .
  12. That's awesome! I'm hoping you'll post a picture when you get them!
  13. Percy, the bulge you are feeling isn't your disc (no possible way), it's probably the C7 bulge/spinous process. Mine moves around as well, but it's just the muscle/tendon over it, not the bone itself moving. A disc bulging can cause no symptoms (because it's old or not big enough) to myelopathy (which has heavy legs, stumbling, tingling fingers, dropping things), and everything in between. Hopefully you can get a good evaluation!
  14. YES! And, things like...my husband's breath. UGH. I finally admitted it to him. It's not all the time, thank goodness, but I certainly ain't kissin' him when it's bothering me!
  15. Hello Percy! If you find my intro thread somewhere, I started developing dysautonomia signs in November (that I know of), and had urgent cervical surgery December 8th. I really have no doubt (in my case) that the cervical compression caused it, although it can be just a coincidence in some people. I have not officially been diagnosed with dysautonomia, but am waiting to see a nearby doc in a couple of months. I didn't even realize POTS was a possibility until a colleague pointed out all my symptoms in February, and then I did the poor man's tilt table test on myself, and I'll be dang.....it was consistent with it. Unfortunately, my symptoms have been getting worse instead of better since surgery. I have searched long and hard to find cases if the dysautonomia can resolve eventually after decompression, and can't find anything. I can note too that I still have cervical myelopathy, so sometimes I'm not sure if my symptoms are CM or DA.! Best wishes on your journey
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