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Missy M

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Everything posted by Missy M

  1. My heart rate and blood pressure roller coaster too high and too low as well. Frequent water exercise in chest deep water blunts my symptoms (the highs are not so extreme and the lows are not so extreme. I don’t know why, it just does. Maybe the good circulation I get while in the low gravity environment of chest deep water helps my body not be so stressed for blood.
  2. I sometimes wake up from my sleep gasping for air, and with my heart pounding. My cardiologist (who diagnosed me with dysautonomia) said it’s from my blood pressure dropping too low in my sleep, so my body is doing exactly what it’s supposed to do: Wake me up! Waking brings my oxygen levels back up. Sure enough, he was right. I started taking my blood pressure immediately when waking up this way. In my case, it was simply very, very low blood pressure occuring in my sleep, so my body wakes me up. At least now when it happens I’m no longer frightened. Just annoyed.
  3. One thing I would suggest which might be helpful is this: Use this forum (as well as other online support groups, such as the closed dysautonomia Facebook groups) to ask people who have it for practical tips on managing specific symptoms your daughter is having. Those groups can be very useful resources for learning pragmatic ways to manage symptoms. For example, if you were to ask people for tips on what they do to lessen the problem of warm weather causing blood pressure drops, a few people would probably talk about cooling vests being helpful. Or if you were to ask people what things they always keep with them when they leave the house, you’d probably get tips such as keeping salty snacks in purses along with bottled water. I’ve had dysautonomia for 17 years, and some of my very best management tips came from such online forums. The doctors know about the drugs, but the actual people who live with this disorder know what the tools are for managing it day to day. Hope that helps.
  4. I got a foldable mobility scooter about a year ago, and it has been a game changer for the better! I can now go to many places I had stopped going on account of not being able to do that amount of walking. Sweet freedom! I REALLY like the foldable aspect of it because I no longer drive (due to dizzy spells and passing out) and it means friends can come pick me up without having to have a special handicapped van or special hitch on their vehicle. We can fold the scooter up and put it in their trunk or the back of an SUV. It will depend upon your particular insurance policy whether it’s covered. My particular health insurance policy will not cover a mobility scooter no matter what. But other policies might. You would need to ask them. Those that do would probably require a doctor’s note stating it is necessary. Hope that helps.
  5. Congrats on your progress! I am continually marveling at what a HUGE difference eating and drinking the right foods make!
  6. You indicated you forgot to tell the doctor some symptoms. I can relate! I sometimes leave the doctor’s office thinking “Darn it! I forgot to tell the doctor about that important symptom or event!” My suggestion would be for you to: 1. Write down the most important symptoms before the appt and take the written list with you to the appointment. Just say “I was afraid of forgetting something important so I wrote it down.” I’ve never had a doctor object to me doing this. 2. Take someone with you, such as a parent or other trusted adult relative, to be your eyes and ears. It can be hard to remember every little thing the doctor or nurse says. It helps to have a responsible, trusted person with you whose job it is to LISTEN and help you recall the tons of advice/instructions you can get hurled at you in five minutes with a doctor. My husband is a very smart man and he has me accompany him to certain medical appointments to be his extra set of eyes and ears. It can be a wise thing to do. As far as dysautonomia, all I can tell you is that both I and a niece definitely have been diagnosed with it. Another relative is suspected of possibly having it. Don’t know if that makes it “familial” per se. I’ve had my symptoms for 17 years and for myself I can say that my symptoms do evolve very gradually as time passes. Hope that helps.
  7. You might try analyzing if there are any other triggers which might be raising your blood pressure. For example, caffeine intake? Cold temperatures? Body position? It’s winter where I live. In my case, the cold air will raise my blood pressure by 40-50 if I don’t put on my heated jacket. It’s battery powered and heats like an electric blanket does. I specifically use it to lower my blood pressure in cold places such as my somewhat drafty church building. (And in the summer heat I use a cooling vest for the opposite reasons). In my situation, standing too long or trying to be too aerobic will usually crash my blood pressure but on occasion will spike it upwards (it’s unpredictable). That’s what I meant by body position. Caffeine will raise my blood pressure. I use it intentionally to raise it if it’s too low but make a point to avoid it if my bp is too high (or is running in a good moderate range). These are the possibilities I look at when my bp spikes too high.
  8. You should definitely get assessed by a specialist who is familiar with dysautonomia. Fyi, my own specialist who has monitored me for five years does find the digital readings from my wrist blood pressure cuff (which I bring with me to appointments in my purse) helpful. It helps give him objective data which has more than once caused him to order certain helpful medical tests. Just fyi, none of us here can diagnose you but I can certainly verify that my own heart rate goes both very fast and very slow sometimes, as you’ve indicated yours does. My doctor in particular said it helped him to see the blood pressure cuff readings for those varying times because he wanted to see what both the high and low bp readings were when the heart’s going fast or going slow. He then ordered tests which assisted him in making a diagnosis for me. There are different types of dysautonomia specialists. Mine is an electrophysioligy cardiologist. They do extra trainiing in cardiology to understand how the nervous system signals can affect the circulatory system.
  9. Yes. I’ve had symptoms for 17 years. In my case, the symptoms have very gradually but quite definitely evolved over the years. So a medical test for me may yield one set of results one year but yield quite different results a few years later. In my situation, the dysautonomia has most definitely changed over time. That’s what makes it feel like trying to nail jello to the wall sometimes... new symptoms (or slight changes in symptoms) seemingly randomly pop up many, many months apart. The gradual nature of the symptoms evolving over time can make it challenging to connect the dots on “cause and effect”. For example, I never had leg pain until suddenly I did. It ended up being years before a blood test (taken for a whole different reason) showed the mystery muscle pain which had lasted for years was caused by an electrolyte imbalance... caused by the dysautonomia. Once we knew that, the mystery leg pain - mistakenly thought by one doctor to be arthritis- was then easily resolved with nutrition efforts aimed at electrolyte balance. I’ve found it can help me sort things out to list on paper a timeline of when each new symptom appeared. It helps me to see it all on a timeline as a general overview. I can then spot connectiins (or even figure out changes in circumstances that might have been triggers for new symptoms) which I had not noticed before.
  10. If it makes you feel any better, I think many of us have “good days” and “bad days”. I’m not minimizing your naturally being upset at experiencing some bad days. I’m simply trying to say “Do not lose heart”. Sometimes our condition just naturally seems to wax and wane, like the moon or the tides. What I try to do when one of those “bad days” (or cluster of them) happens is stay hydrated, eat salty food, focus on good nutrition, and do a hobby I can do while lying down. I’ve found that if I have enjoyable hobby materials always at the ready, instead of perceiving a forced day of lying down as “a frustrating interruption of what I wanted to do”, I now perceive it as “Okay, I’ll do this fun hobby today”. (For me it’s painting puctures and blogging). Inevitably, a new day rolls around that is a “good day”and I can just pick up again where I left off on the last “good day”. Hope that helps.
  11. I personally think the doctors skirt around the question because they don’t really know. There’s just not much solid research out there yet. I can only personally say that my dizziness symptoms began 17 years ago. (Although now my docs think I had dysautonomia for many years before that, judging by long term bone damage caused by my very bad electrolyte imbalance obviously occurring for what they now think was probably decades. I’ll add that once we knew about this we stopped the bone damage from progressing further by simple daily nutrition focused on electrolyte balance. Wish I’d known sooner.) I’m older than some of you. Old enough to be a retired grandma. I’ve had kids and a great career. Did I have to adapt to my physical limitations, which for me did very gradually progress over the years? Yes I did. In my opinion, half the battle is keeping a mindset open to constantly seeking out ways to adapt to what your body is able to do. My skills at creatively using assistive devices to keep on doing things I enjoy are quite excellent. If I want to go outside in the heat, I put on my cooling vest. If I want to stay on task even though my crazy eyes are suddenly overdilating, I put on my sunglasses (even inside my home or at church). I carry a portable stool around so I can sit at a moment’s notice (my friends are used to it and think nothing of it). My best advice for handling this long term is stay educated about it and always think in terms of “how can I adapt to this situation to still do things I want to do?” While there are realistically certain things I can no longer do (like ballroom dance, which I did for years) I’ve found other fun substitutes (painting pictures and blogging). Life has gone on and I’m still having lots of fun. Hope that helps.
  12. I am just a layperson like most everyone else here. That said, it’s my understanding from reading many articles over the years that Dysautonomia can be caused by many different things. Causes that you commonly read about include autoimmune inflammation and trauma injuries (such as a car wreck). There can be other causes as well. In my case, my doctors figure that an inherited autoimmune disorder (which I and some siblings share) probably chewed up my autonomic nervous system. Both I and a niece have Dysautonomia, although others in the family developed other equally serious but different ailments from their inherited autoimmune disorders. I definitely notice a correlation between times that my immune system goes into inflammation overdrive and times my Dysautonomia symptoms worsen. In my case they go hand in hand. Keeping my autoimmune inflammation down seems to help ease my Dysautonomia symptoms some.
  13. My cardiologist who monitors my POTS & NCS evaluated me for a pacemaker by doing a (for me, second) Tilt Table Test specifically for that very purpose. As I understand it, he was wanting to see if my heart was erroneously sending itself incorrect signals versus was it a healthy heart being sent incorrect signals from an “outside source” (my nervous system). In my case, he determined that a pacemaker would not solve my particular heart rate issues. I appreciated him making sure before putting me through a pacemaker surgery.
  14. I had a very positive experience with Midodrine for the first 9 months I took it. Then, as my condition evolved, my dosage needs changed. I found that keeping my doctor informed helped, as he guided my gradual reduction in dosages (which for my particular situation was the appropriate response). It was helpful to him, he said, for me to keep him informed. I would typically do this by phoning his nurse. I do recommend you keep ypur doctor informed and change dosages only under medical supervision. I no longer take it, but that’s only because my body very gradually evolved into producing hyPERtension (too high of blood pressure) as well as hyPOtension (too low of blood pressure). I’m a roller coaster girl now with regard to my bp, so it was determined by my doctor that midodrine was no longer a workable solution for me.
  15. One possible thing you might try is use google to locate any electrophysiology cardiologists who practice medicine near you. Electrophysiology is a specialty type of cardioligst. They get extra training to learn how to recognize the nervous system’s impact on the circulatory system. They’ll tend to state on their clinic websites if they are certified in this, since they have to go to a lot of trouble to get this extra certification. I only know this because the specialist who recognized my dysautonomia (after a neurologist and a regular cardiologist did not recognize it) is an electrophysiology cardiologist. He and the one other electrophysiology cardioligist at their heart clinic are the two who treat patients with autonomic nervous system malfunctions. I’m in another State (Arkansas) or I’d suggest my own doctor to you.
  16. I simply take baths, to avoid the standing problems that go with showering.
  17. You might ask her physician to do a blood test to check her electrolyte levels. There’s a simple blood test for that. My niece and I both have dysautonomia. In our situations, we get extremely severe, debilitating muscle spasms if our potassium levels drop too low. My niece’s family thought they were actual seizures and still refer to them that way (they can be that bad). Fortunately, once we each became aware of our body not keeping our electrolytes in balance we’ve been pretty mmuch able to stop the problem bby eating high potassium foods daily. This may not be what’s going on in your family but could be worth exploring.
  18. Like many of us my nervous system works much more normally when I’m chest deep in the low gravity environment of water. Getting in water and exercising has helped me to stop gaining weight, plus gradually lose some of the weight I gained from having to be so sedentary.
  19. It may help to record what your blood pressure is doing at these times of dizziness, to show your doctor(s) later. My doctors have found that useful.
  20. I’m not at all saying that seeing a neurologist may not be helpful. It may prove VERY helpful! I’m only adding that, in my case, it was an electrophysiology cardiologist who was the specialist that ID’d my issues as dysautonomia and confirmed his diagnosis with appropriate medical tests. So electrophysiology cardiologists (a type of specialty cardiologist) can also be helpful. They earn extra certifications in how the nervous system impacts the cardiovascular system. Most electrophysiology cardiologists will list this specialty in their listing on their clinic websites since they have to go to so much extra trouble to earn that certification.
  21. It can be helpful to keep the perspective that a person’s dysautonomia can evolve over the years. My symptoms began 17 years ago. Initially I could still do my favorite sport (fencing). Things gradually changed and I switched to ballroom dancing. After 12 years of that I shifted to non-aerobic water exercise. Whatever a person’s particular exercise abilities at the time, if our body changes it can be (in my opinion) helpful to pro-actively seek other options. 👍🏻
  22. It would be wise to have your doctor evaluate your chest pains so that you’ll know whether you should be alarmed (or not). In my situation, after a thorough workup and tests my doctor determined I have a healthy heart and should not be alarmed. So it gave me peace of mind. But it could have been a different result, so it’s definitely the smart move to consult with your doctor!
  23. I got daily migraines from laying down for 1 1/2 years. Here’s what I found that helped me: 1. Sleeping propped up on a wedge pillow bought me more time asleep before the headaches would wake me. 2. Upon awakening, pedaling non-aerobically (in “slow motion”) with a floor pedal exerciser while seated in a chair would typically resolve my headache in an hour or two. Using caffeine (coffee, which my doctor okayed for me) while pedaling helped. As a bonus, it would stabilize my heart rate and blood pressure for as long as I pedaled. I’m guessing (without knowing) that perhaps it “unpooled” the blood in my lower legs. 3. I’m not claiming this would work for others but my daily migraines surprisingly went away when I went on a moderate ketogenic diet. I went moderate to avoid the dizziness, etc. that people often get with keto diets (we already have enought dizziness in our lives with dysautonomia). The migraines were one of three symptoms that went away after five days on the keto diet (the other two being edema and bradycardia). The diet has zero impact on my other symptoms (tachycardia, hypotension, hypertension, etc.) So it’s no “cure”. But hey, I’m SO incredibly happy to be shed of those headaches that I now do the keto diet as a lifestyle. I would add that if I get careless and don’t follow it precisely then my banished symptoms do return. This all sort of makes sense to me because I read that a keto diet is a longstanding, mainstream medical treatment for epileptics because of the stabilizing effect it can have on the nervous system. Hope that helps.
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