HangingByAThread

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  1. Anxiety

    Vanderbilt likes to prescribe Methyldopa for Hyper POTS. It did away with my anxiety (plus it is really inexpensive and I've had no side effects).
  2. I'm so overwhelmed...

    I think one of the biggest misconceptions about POTS is that doctors think you need to actually pass out to have it so patients (myself included) think we must not have it. I may not pass out but I get pre-syncope quite often as I'm sure many others do as well. shawna, I can relate to your tachycardia episodes. First of all, I never have tachycardia when I'm stressed but rather when I'm calm, when I'm daydreaming or sitting quietly without a care in the world. Secondly, I get the worst tachycardia episodes during my sleep for reasons nobody has been able to explain to me. however, what I find the strangest is that it doesn't matter what time I go to bed.....it can be actually going to sleep or just taking a nap but I only have ever had the sleeping tachycardia 30-60 minutes into my sleep, never any other time during the night. I used to think maybe my heart rate is too low but all monitoring has shown that I get the lowest heart rates (20 something beats per minute) around 4 or 5 a.m. So I guess that doesn't explain it. I had a sleep study recently but, of course, I really wasn't able to fall asleep so that was useless. I have always been advised to have a ton of salt but nobody seems to recommend it at bed time but a couple of months ago I decided I would have very salty late night snacks and pop a salt tablet. I'm not sure if it is coincidence or what but I've had less sleeping tachycardia and the severity and length of the episodes has decreased so that I didn't need to wake up my husband or call 911. My endocrinologist has also advised me to lie still when I have one of them and not get up (I usually feel like I will physically die if I don't sit up because I shake so bad but I'm trying to listen to him and see if that helps with the heart rate not shooting up to the 170s). So far I've only had smaller episodes of short duration the last month or so so I haven't really had to try this out. I also was told to apply ice to my neck and thus helps. I go to bed with a couple of really cold cans of seltzer in the night stand and the remote control for the air conditioner within arm's reach and find that helps a bit. I've also noticed that sometimes it feels like the tachycardia is a positional thing and some start when I roll over. I also can only sleep on my right side or a little bit on my back if I'm really propped up. If I roll onto my stomach all **** breaks loose and I feel like someone is inflating my head with a bicycle pump. If I lie on my left side I can feel every heart beat and get ringing/squeaking in my ears so I have a ton of pillows to try to keep me from moving around. You might also want to put the top of your bed on 6 inch riders like is advised by athe Cleveland Clinic. I sleep much better this way and have less episodes of waking but it is important that the entire bed is in an angle, you can't just prop yourself up with pillows.
  3. If I’m not mistaken I thought I heard that Norepinephrine levels can rise if you are scared to death when having your blood drawn so I don’t know how accurate this test would be for you if you find getting blood drawn so difficult. When I had my tilt table tests an IV was placed into my arms beforehand – sometimes it was shortly before hand and another time it was hours before (due to the time I had to wait for the test). If you can tolerate getting an IV put in, would it be possible to ask that the IV be placed first thing in the morning and then you sit around and have your test performed hours later, after you might have a chance to calm down a bit? I remember specifically having a hemodynamic echo and not only was it the norm to inject a radioactive tracer into the IV in certain intervals, but every once in a while blood was drawn from the IV line as well - this way the test would be accurate (since many patients flinch or have a vasovagal response from needles/seeing blood.
  4. I'm so overwhelmed...

    Hi Shawna, I’m so sorry you are going through this. I’m a mom, close to your age and live on the East Coast as well. I know how hard it can be to go through this and still have kids to take care of. You mentioned that you had testing but all that showed was sinus tachycardia. What testing did you have? Any autonomic testing or just cardiac testing? I assume your doctor was able to catch an episode on a monitor? I get a ton of sinus tachycardia but all my echos and stress tests have always been fine – which is a good thing but it doesn’t solve the problem of totally stopping the tachycardia. Do you know how fast your episodes are? What about your blood pressure………..is it normally high or low or does it fluctuate? How about when you first wake up? Have you tried to do the “poor man’s” tilt table test (blood pressure/heart rate readings lying down, then standing up for 1, 3, 5, 10 minutes, etc.)? Does this only happen to you when you are in bed or do you have episodes during the day as well?
  5. Kardia Mobile

    I have it and love it! I got my first one (an earlier version) about 5 or so years ago when my electrophysiologist prescribed it for me (as a way to save money on costly 30-day event monitoring because I had to be monitored so many times). At that time it wasn’t advertised and was only available by prescription. Recently it broke (I dropped it a million times) so I just bought the new version. It is great because it records and saves EKGs that can be read by my doctor when I go to see him (they can be emailed to anyone as well as printed out). (Often I don't have symptoms in front of doctors and all my EKGs in a doctor's office are always normal.) Besides the Dystautonomia/Orthostatic Intolerance/Inappropriate Sinus Tachycardia/POTS symptoms, I had to have an ablation in the past for a totally unrelated electrical problem (that has since been 100% cured) and Kardia was instrumental in confirming that, yes, I no longer have this issue. The issue that I had years ago was actually very hard to diagnose and nobody took me seriously for quite some time (everyone kept saying I was nervous and the event monitors didn't show anything because the issue would only happen once a month or so). At that time I went from doctor to doctor and once I was even rushed to the hospital in an ambulance after nearly collapsing at work. Looking back, if I would have had the Kardia back in 2001, I would have been taken seriously and it would have saved me a lot of time, money and worry. There have been multiple times where I’ve had to call EMS because I had a major episode of immobilizing tachycardia (like on public transportation) and when they first arrive they usually tell me to “calm down” and ask if I have “anxiety” (because I do look like a nut and can’t stop shaking or chattering my teeth by the time they get there) but then I whip out my iphone and show them the EKG recordings and they all take me seriously because I have accurate readings of what’s going on. If they take me to the hospital, I whip out my phone and show them as well. I took my readings to Cleveland and Vanderbilt a couple of years ago as well and that helped not only with the diagnosis but with fine-tuning the medications that were recommended for me. I took a recording recently because I just didn’t feel right and couldn’t put it into words…………I was extremely tired and felt like my heart was suddenly skipping beats while sitting down so rather than waiting until I see my doctor next month, I sent the recording to one of the Kardia techs who read it and sent back a report saying “Sinus Bradycardia, PVC(s), Non-Conducted PAC(s), PAC(s)” so now I have something concrete I can show my doctor about how my issues are progressing and changing over the years. Also, if I’m not mistaken, it is supposed to flag A-fib and that is important to me because my grandparents had it and both of my parents so I do fear that I may one day develop this as well and this gives me peace of mind so I don’t have to keep running to the doctor and fearing I’m going to die. I really would recommend it and I would assume that you could put in for reimbursement for it through a health savings account, if you have one.
  6. Help!

    I forgot to ask, are you being seen in the Dysautonomia Clunic or by a "regular" cardiologist?
  7. Help!

    I was seen at Cleveland as well. I was told to expect to spend three days there and after I saw the dysautonomia specialist he then scheduled all the tests. Prior to my visit I chatted on line with a nurse who was also able to arrange for me to see a neurologist there. I had a lot of testing and even saw a vein specialist (I had a phlebo test, tilt table, stress test with echo, QSART, and a hemodynamic blood volume test with radioactive dye). The neurologist also did some blood work. All this actually did take 3 days.
  8. Useful Smart Watches?

    I swear by my Alivecor Kardia monitor. It costs about $125 and you no longer need a prescription (mine was recommended by my electrophysiologist). It is a case that fits on the back of your smartphone and then you install the app on your phone. You can record and store tons of high quality EKGs that you can then email to your doctor or print out. The app also flags abnormal heart rhythms and if you really need reassurance, you can email a reading to an alivecor tech who can interpret it (you do have to pay for that).
  9. Scared to go out or do anything!

    Margaret, have you seen any specialists besides the neurologist? (Like an endocrinologist or dysautonomia specialist?)
  10. Methyldopa question - palpitations

    Hi Emma, I meant to reach out to you earlier. I’m on a low dose…..62.5 mg. My doctor prescribes the lowest pill they make, which is 250 mg and I cut into quarters and take one quarter each day. Initially, he wanted me to start on 1/4 pill (62.5 mg) and work my way up to 1/2 pill (125 mg) after a week or two but I tried but just couldn’t tolerate the higher dose so I was instructed to stay on the 62.5 (I have low blood pressure most of the time). I also was instructed to only take it in the morning since I have extreme bradycardia when I sleep (heart rate in the low 20s). I feel so much better on them because they really calm down the tachycardia and the adrenaline rushes. I no longer feel like a nervous wreck who jumps out of their seat when someone drops something or the doorbell rings or a car honks but they haven’t taken away things like the little palpitations, PACs and PVCs. I still have them but they aren't as extreme (they are softer and not felt as really hard thumps). I also feel like the calmness they give me is a natural calm (or just a complete absence of the nervousness), not like I’m drugged up on something. I have to take a huge amount of salt and wear my compression hose all the time or else my ankles and feet swell up but the relief I get it more than worth it. Another good thing I noticed about the Methyldopa is that before I was on them, when I’d walk or stand on line my blood pressure would go very high and I’d sweat like crazy (to the point of having to remove my coat outside in the winter). I would have to stop walking and lean against a building and wait for the heart rate to lower, pant and mouth-breathe all the time, etc. I’m no longer like that since taking the Methyldopa - my heart rate doesn't spike as much. I feel like my nervous system no longer goes haywire with all this extra “traffic”. Honestly, I don’t know what I’d do if they ever took it off the market, I don’t think I could function anymore. I’m wondering if maybe you just have to wait a bit until your body adjusts to the meds? In any event, I’m curious to hear how you are doing on them now? Do you feel any better?
  11. Feeling unwell on low carb diets

    I don’t have diabetes but rather I am hypoglycemic (specifically “reactive hypoglycemia”) so I don’t know if any of my experience will help you at all but here goes…. When I was first diagnosed I cut back a lot on the carbs and sugar and felt miserable. Not because the diet was hard to stick to, but because it made my body just feel horrible. I slowly started to reintroduce a small amount of carbs/sugar and feel much better. I eat small meals but snack all day (I consume food about every 2 hours and eat early up until I go to bed). I just eat smaller portions of carbs and have protein alongside them. If I’m going to eat simple carbs (like pasta) I just have a spoonful or two and that’s it (and I eat a lot of protein with it – for instance I make a really chunky meat sauce, have a lot of cheese, and have a lot of vegetables on the side). I also never consume soda or juice or anything else that will instantly make my blood sugar spike and then plummet. On a typical day I will have my buckwheat flake cereal (yes, I know, sounds glamorous doesn’t it?) then an hour later a bacon, egg and cheese sandwich. Then when I feel like I’m crashing a bit I have some mock-peanut butter cups (dark chocolate with sunflower seed butter inside – 4 grams of protein, 17 grams of carbs and 12 grams of sugar). It seems to satisfy my cravings for junk and wakes me up a bit (I can’t really have caffeine – even decaf makes me shake). Then I can go with just having a cheese stick a little while later but I find I need a little bit of carbs at lunch (with protein, of course) and then near the end of the day when I’m in that slump I have another small serving of carbs. If I want to have dessert I wait until my dinner is digested and I’m back in the low sugar slump and then have a small portion, followed by high protein and a tiny bit of carbs before bed. It sounds like a lot but I seemed to have worked out how to keep my sugar levels on an even keel. I also don’t really eat junk food or things with a lot of chemicals and cook a lot of my own (simple) food - not because I’m a martyr or want to, but out of necessity (I have a lot of major food allergies).
  12. A day in the life

    I'm pretty much a creature of habit - doing the same thing usually keeps me from feeling awful. Yesterday I woke at my usual 5:55 but stayed in bed until 6:40 because I felt like I was in a coma (I justified the late start time because I just washed my hair the day before and it didn't look or smell that bad so I could skip and stay in bed longer). Then I took my thyroid meds and woke my kids. I popped 2 salt tablets and took a shower (but the water kept going too hot and then too cold so I was getting paranoid that I would start getting symptomatic) so I made it a quick shower and put on my compression stocking ASAP. I took my blood pressure and ate a bowl of my gluten-free buckwheat flakes (with lots of salt on top) and then popped yet another salt tablet and then 1/4 Methyldopa tablet. We were running late to get my younger one to school so I yelled at her to run ahead and catch the bus for me (which she did) so we wouldn't have to make the dreaded 10 minute walk to her school (she got off the bus herself so that I wouldn't have to wait around 15 minutes for the next bus. I then transferred from the bus to the subway and prayed that a train would come right away and that I'd get a seat. I only had to stand waiting for 3 minutes so it was a win-win situation. I made my way down to the first few cars to try to beat the others for a seat. It got pretty hot on the train so I had to peel off my jacket and drink 1/2 bottle of water but I made it to my stop ok. I made the 4 minute walk to my job ok, stopped by McDonalds and picked up my daily bacon egg and cheese (more salt) and ate that at my desk. I started work at 9:00 (sat most of the day with multiple trips to copier/bathroom/kitchen/bathroom/bathroom and bathroom I drank about 6 bottles of water in total throughout the day and ate about every 2 hours to keep my blood sugar in check (cheese sticks, ham sandwich, yogurt, chips and guac followed by another couple of salt tablets). I usually work until 5:00 with my husband picking me up (I don't do well after being at work all day) but I left at 3:00 since it was Halloween and I wanted to help the kids dress and get dinner made early. I had a mini-freak out in the car home because I forgot to bring a bottle of water with me and we were stuck in traffic. I was ok though. Husband dropped me at home and he went to pick up my daughter at after school (because I couldn't possibly do that being at work all day). I made some quick homemade meatballs and pasta and sat on the couch. I made sure to walk to the door slowly when the kids came knocking for candy. I didn't go with my own kids because that would mean me climbing up and down hot stairs (kids hog up the elevators in our development). My kids and their friends came back to the apartment but my husband hadn't come back from his meeting so I got a little panicky that I'd have to walk one of the friends home and at 9:00 I really am not doing well (my feet are big swollen balloons by then). I had to bite the bullet, chugged down some water and had to speed walk the 15 minutes each way to get her home (anything slower and I wouldn't have made it). My legs were starting to get uncoordinated like jelly and I didn't think I could make it so I walked faster and faster, kept yelling at the kids "hurry up". I returned home in a big sweat and headed to bed so I could put my swollen feet up. Then I just watched tv and fell asleep (followed by more snacks and another salt tablet, of course). It was a really good day for me!
  13. Not lying on my back helps me (I can only sleep lying on my right side now, which has really become a pain because I wake up due to my hands/arm falling asleep). Also, I follow Cleveland Clinic's protocol of elevating the bed so that I’m not flat (it stopped the vibrations as well as the muscle spasms and leg jerks that I’d get while lying supine) but it has to be the top of the bed raised so that my whole body is on an incline – pillows aren’t enough. Now I can sit in bed and watch TV without vibrating! However, every once in a while I wake up vibrating very slightly first thing in the morning (often if I've rolled over onto my back) but once I’m out of bed, I’m fine. Vepa, those hypnosis videos sound interesting. Is there any one in particular you could recommend?
  14. Severe Adrenaline Surges

    Methyldopa helps me.
  15. Hormones and Vitamin D?

    I'm premenopausal but my hormone levels have always been fine when they were checked. However, before my period my POTS symptoms go totally off the charts. I also have low vitamin D and was told to supplement that by my endocrinologist as well as B-complex. I hate the smell of the B-complex but notice a difference when I don't take it.