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Everything posted by TWynnB

  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
  16. Oh, I feel for you! I at least get more than 3 hours. Well, most nights. I'm a little bit different story because I have spasticity as well, which may be a large part of my sleep issues. My GP did prescribe Trazadone for me, which I can barely walk when I take it, but doesn't turn off my brain (I kind of wonder what my catecholamine levels are...). It does work fairly well for me. I am grateful because I now sleep until 4:30 or 5, when I was waking up before 4. I also had a hard time falling asleep, and would wake up for a couple of hours in the middle of the night. Most nights I'm now sleeping 5-7 hours straight. I take my meds at 9, and make sure I head to bed instead of delaying, since I know I can't sleep in. It's hard to recuperate when you're exhausted!
  17. Since my issues started, I am insanely sensitive to smells, many of them make me nauseous. I made my husband switch seats with me the other day at a child's event - the lady's clothes had that stale smell, he couldn't even smell it.
  18. Congratulations! Glad you're enjoying it
  19. Congratulations! Keep us posted on how the first day goes!
  20. Sure, if you'd like to. It's quite fascinating from a nerd standpoint, would be more so if it wasn't me. Feel free to post here or send a message.
  21. Yes, my thyroid function was checked last month, thanks for asking. The atenolol has helped probably75% with my hand tremors, which is great for my job. It has also helped significantly with the adrenaline surges, which I'm really happy with as well. I also started the baclofen last week, and although my legs are very fatigued and my gait is whacked, they are much more comfortable. My personal life has been turned upside in the last week which has made me ... worn. I imagine that's not helping with my fatigue. The Ativan would be nice to use (they had me on it post op), but as my co-manager said, I "looked like a grumpy cat". My night time dose would have me gorked about 20 hours later. So, I don't take that. I probably don't need to anyway with the baclofen. I'm meeting with my boss as well tomorrow (she's from out of town, I expected to talk on the phone...now I'm even more nervous!) to let her know my increase in hours isn't working. I worked last tues PM, to go from m/w/f mornings, to adding tu pm in, and my legs have been pretty bad since. I'm not too worried of my position because there's no one to take my place, but I'm still nervous.
  22. Oooohhh, I have to chime in here. I have 4 cats and a dog, and have been a vet for 15 years. I will admit a cringed with the suggestion of a lab or labradoodles. Most labra/goldendoodles I have met are CA-RAZY. Not all of them mind you, but most of them. And while you can get an excellent lab, many, many of them are very high energy as well. The back yard breeder varieties can have a lot of issues. I agree a GREAT idea would be to contact a therapy dog group. We worked with Canine Companions for Independence. If they had a pup, trained til 1 by volunteers, but it didn't pass for one reason or another (including conformation), they would find it a home without further training. I had recently seen...it was a weird combination...maybe it was a standard schnauzer-poodle? Anyway, FANTASTIC dog, worst mouth conformation I had seen in a long time. I can't fathom it will pass testing, because it won't have the mouth "dexterity" to pick up fine objects like dollar bills. I would've adopted that dog in a heartbeat if it didn't mean me getting divorced . I lost my border collie mix (very high energy, very sweet and obedient, very neurotic!) at the age of 3 to cancer. It's almost odd how it worked out...she would've been devastated by my condition, since I can barely walk 1/2 mile now, and I used to take her on 6-8 mile runs in the mountains. Anyway, we got Emma Jean - some crazy looking lab/pit/terrier mix with wire hair coat, a couple of years ago. She is FANTASTIC. Lazy, cutest thing ever, listens...most of the time. She and my young cat play chase a lot (hysterical). It took me a while to find her, because I knew what I wanted. I got her around 8 months old - because you can mostly tell their personality by then, AND (added bonus!) most are potty trained at that age too. There's a lot of great rescues that have their pets in homes, so they can describe their personalities, etc. That would be a good choice too. I'd try to find someone with experience in dogs (but not so passionate they'll talk you into something you shouldn't have) to help you out. Maybe a local vet that your neighbor has used a lot. I'd be more than happy to help you too, if you have questions on breeds, etc. Dogs are a big commitment, but can be so-very-rewarding!!
  23. Thanks for the warm welcome I am happy to say that the atenolol brought my heart rate down to 70-100, without doing much to my blood pressure! At least it takes care of a *little* bit of my fatigue. I think I'm going to let my body adjust to this, and assuming my legs and arms are still spastic, ask to see if baclofen is appropriate for my spasms (my surgeon did recommend it). I've enjoyed poking around here and learning a bit. Well, maybe "enjoyed" isn't the best term!
  24. Greetings! Looking around on here, I realize that I truly probably have mild-moderate dysautonomia and possibly POTS, although I am very grateful I am not as severely affected as some of you are. I am hoping I don't progress more to join those unlucky people! This mess probably actually started last summer - I had started a new job that was pretty intense, but I would get up at 5:30 to go on a 3 mile run. The run would go great - but it would take me 4-6 hours to recover. After a few times of this happening, I stopped running. I didn't go to a doc, because the symptom seemed so vague and non-specific. In October, I was walking up the stairs, and my legs felt weak - like I had a long run the day before and they were exhausted. Then it happened the next weekend. And then my fingers started tingling, and then my arms were getting weak. My doc found nothing (he should have), but did a ton of bloodwork, and referred me to a rheumatologist. That doc wasn't my BFF (he acted like it was normal aging...), but ordered an EMG, which was normal. I should say, at my GP's appointment on Nov 5, my heart rate was 118, so he ran an EKG. I laughed and told him I just had breakfast and coffee at the best place in town, so probably just caffeine. My symptoms rapidly progressed, I was dropping things and stumbling. Dr. Google made me think I had primary progressive MS. My doc got the MRI, which was done on Dec 2. On Dec 3, he called me and told me I had severe cervical spinal cord compression with cervical myelopathy. It was a relief that my diagnosis had a cure! After walking out of work, checking in to an ER, checking out of that hospital for a second opinion (that surgeon wasn't board certified yet), and going to my second opinion, I had surgery on December 8 of last year. I had an ACDF of C3/4, with a corpectomy of C5...so a 3 level cervical fusion. I am nearly 20 years younger than the average patient (I am 43). My surgeon made the comment while checking on me that my heart rate never dropped below 120 during surgery, which is pretty abnormal considering the drugs I was on. I am 14 weeks out now, and my recovery has been...a trial. I joined a private online group for my profession, for those that have health issues interfering with their job. While mentioning my "little tachycardia problem", never mind some other issues, a colleague said she and I had an awful lot of symptoms in common. So I started researching dysautonomia...and she's right. It explains a lot. Thing is, some symptoms may be cervical myelopathy (which I definitely still have) and some may be dysautonomia. I still have a spastic gait, and sometime stumble, especially if I'm fatigued. My first three digits on both hands are still numb, left > right. Both upper arms burn, and get much worse with exertion. I have crazy patellar reflexes, and my clonus response goes on forever as well if I am tired. My feet and calves get very cold - which I learned after being at a 2 day meeting this week - is much worse if I sit in a normal chair all day. I am normally a stress eater and a foodie, and I've lost 14 lbs (about 10% of my body weight) because I'm nauseous or just don't want to eat half the time. I also get full quickly when I do decide to eat. I have a hard time sleeping at night despite my fatigue, especially if I don't take my pain meds. My heart rate in the morning tends to hang at 110-140, which causes me to fatigue pretty easily. My heart rate tends to hang at 85-95 in the afternoon/evenings, it used to be 60-70. I did do the "poor man's TTT" that my friend recommended, and my HR went from 98 to 139. I was honestly surprised, I didn't expect that. By the end I was trying to catch my breath. Luckily, my blood pressure stays fairly constant and I am rarely dizzy. Oh - and now I'm getting hand/arm tremors while working, which is very difficult to deal with. This is new in the past month. I did see my GP yesterday and discussed dysautonomia and POTS, and he is very open to the idea (thank goodness). On the recommendation of my surgeon and my GP with my tachycardia and tremors, I'm going to try atenolol tomorrow and see how I handle it. I hope it helps me, work has been really difficult with those pesky tremors, which gets much worse if I get an adrenaline rush. I was supposed to start FT work next week, and I am just now moving up to half time work now. I'm not sure when I'll be able to handle FT work again. I also have a referral to a neurologist, but can't get in until May. Thanks for letting me browse and learn! You seem like a great community! (oh my, this was a long post!!)
  25. I lost my 3 yr old pup a couple of years ago to cancer. I tried to keep in mind I gave her a wonderful life doing what she loved best - running in the mountains. I also gave her the gift of a peaceful passing - I think they're not meant to suffer. My daughter, who was 7 at the time, asked me if dogs go to heaven. I told her I'd like to think so. She said, "well mom, isn't heaven perfect?". I responded - "that's what they say". And she said, "well then, there has to be dogs there if heaven's perfect". Out of the mouth of babes.
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