HangingByAThread

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  1. I've had 3 TTTs. Only the first one was horrible (started to cry during it from the tachycardia and was bedridden the rest of the day). The other 2 were progressively better but I think that was because I was on my way to figuring out what I had and was starting to load up on salt and water. Good luck to you. I had a great experience at Vanderbilt. They really helped me the most.
  2. POTS and bladders

    I haven't any suggestions for during the day but have you tried to elevate the head of your bed. Once I did this I stopped waking up each night to pee. According to Cleveland Clunic: Raise the head of your bed by 6-10 inches. The entire bed must be at an angle. Raising only the head portion of the bed at waist level or using pillows will not be effective. Raising the head of the bed will cut urine formation overnight, allowing for more volume in the circulation in the morning. You may use cinder blocks or bed raising kits. I bought some heavy duty metal risers from Amazon and they're great!
  3. Microscopic Haematuria

    I have had microscopic haematuria for years now. At one point my ob/gyn got a little concerned and sent me to a urologist to rule out bladder cancer. I had all the invasive testing as well as MRIs with contrast dye but everything was negative. I almost never get bladder infections so we were never able to figure out the cause of this but, interestingly enough, my mother and her mother have always had the same issue of blood in the urine (neither of their doctors could find a cause of it and neither of them developed any complications from it).
  4. Vandy appt next week - Do you have these symptoms?

    Yes, I have almost all those symptoms and a long list of others as well. I went to Vanderbilt a little over a year ago. The dysautonomia specialist and neurologist were fantastic. The neurologist performed a lot of blood work. I’m go glad I went and my life has really improved since (but it has been a struggle and a lot of rollercoaster ups and downs). I will never feel normal but I can do so much more now and feel less uncomfortable (specifically, they really helped with stopping the adrenaline rushes). I wish you luck with your appointment and I hope that you have a good outcome!
  5. Does looking at computers make it worse .

    Yes, I also have issues with moving vehicles. Normal driving is ok but when we have to take a sharp turn or maybe the driver makes a very fast U-turn I have issues. I feel like I'm on an amusement park ride and even though the car has finished making the sharp turn, it is like my body gets confused and it still feels like we're taking that turn and I get really dizzy for a minute or two. Sudden stops or people cutting us off makes my heart race and I sweat bullets. Otherwise, I can tolerate riding in a car just fine but I do close my eyes and hold on a lot and it drive my husband nuts!
  6. Ventolin Or Symbicort

    I’ve taken Symbicort, Albuterol (Proventil and Ventolin) as well as Xopenex but, unfortunately, all of these medications make me feel a thousand times worse. The Albuterol gives me tachycardia, major insomnia and makes me shake uncontrollably (so much so that people stare at me). I've even tried taking them through a metered dose inhaler and then rinsing out my mouth afterwards but I still shake like crazy. I have asthma but don’t take anything unless I’m really in a bad way. Two years ago I saw a new doctor who told me that she developed POTS when going to medical school. She then recommended Xopenex because it is an emergency inhaler like Albuterol but doesn’t have such bad side effects (less tachycardia). I’ve tried it and while it doesn’t make me as symptomatic, I found it didn’t work quite as well as Albuterol so I take the Xopenex when I’m too scared to take Albuterol but if I’m having a major emergency I take the Albuterol (most times I just take a vial of prescription saline in a nebulizer). As for the Symbicort, I took it once and it gave me a horrible burning sensation in my lungs and gave me really bad hives (my allergist told me to stop it immediately). I normally don’t get hives unless I’m having a very bad adrenaline rush or major food allergies. I remember learning that Symbicort is a mast cell stabilizer, which sort of surprises me because I’ve always felt that with my gazillion allergies I might also have a mast cell disorder but I’ve tested negative so I’m really perplexed. (I'm hyperadrenergic.)
  7. Flu shots

    I’m a bit squeamish about needles but I get the shot religiously every year. I might have skipped a year or two but then I got the Swine Flu one summer and it went into pneumonia for 3 weeks. I was so bad that (104 fevers) that I don’t remember much of that time. Every year I get a bit nervous about getting the shot but I do it and I’ve never had an issue. I have a lot of allergies so I make sure I get a latex-free one. They also have some that are preservative free. I take the shot because when I run fevers or have viral infections I get crazy arrhythmias.
  8. What's next after propranolol?

    I cannot tolerate beta blockers so I take Methyldopa, prescribed by Vanderbilt. I swear by it.
  9. Does looking at computers make it worse .

    I’m ok with the computer screen at my job all day (but I have an anti-glare screen on it and have the brightness turned waaaay down because I can’t stand bright light). I find what bothers me more is watching videos on the cell phone or some tv shows. Old movies seem to be totally ok (thank you Turner Classic Movies!) but sometimes I will watch a documentary – like a crime show and there will be a photo of someone the camera is fixed on and then the camera pans out very slowly and I will get really dizzy so I have to look away for a few seconds and then I’m fine. Shows with things like moving vehicles are not a problem but the camera panning in and out gets to me and I get instantly dizzy. Nothing feels as embarrassing as me lying on the bed watching tv and actually feeling like I am going to fall off! 3D movies aren’t always the best thing either and if the camera is a bit shaky then I feel horrible. A few years back my kids made me take them to the movies. It was a movie for pre-teens shot to look like one of the kids narrating/staring in it was filming it with his ipad and the camera wasn’t steady. I didn’t make the connection right away but I started to get very nauseated and dizzy and so did my pre-teen (who thought she was going to throw up so we thought she was sick or ate too much popcorn). We all had to leave and my husband had to bring the car around because I was actually unable to walk right (I felt like I was drunk and couldn’t stand up) and then my daughter and I had to lie on the bed for a couple of hours until the feeling passed – it was horrible! I can’t remember the name of the film now but afterwards my husband found an article that told of many people walking out of theaters and given their money back because it made a lot of folks dizzy and sick.
  10. I made a cake.

    Congratulations! This is awesome (and the cake looks good too). It is funny but your cake reminds me that I first discovered that my meds were helping because I was able to make more varied food for my family (less Domino’s and Chinese takeout) and then I took out baking gadgets that hadn’t seen the light of day in years. Doesn’t the brain fog really frustrate you? I “cheat” now and have one of my kids read me the instructions and help bake and when I get to the point where I can’t remember what to do next, she’ll tell me. When I’m baking by myself I find that it helps to take out all the ingredients and put them on the table. Then as I add them to whatever I’m making, I quickly put away each item. Then I don’t have to ask myself “did I put in the baking soda?” or wind up doing something stupid like putting in the salt twice. I still have to read things over again and again though. Sometimes I wish I could stay home from work and just cook. It does wear me out and can be totally exhausting but I notice that if I spend hours in the kitchen I don’t feel that bad overall because I think I wind up doing the perfect combination of sitting a bit, standing up, taking a few steps, sitting down again. I think it gets the blood flowing just right for me – cutting apples, loading the dishwasher, chopping something – everything sort of in moderation and not too long doing one thing – and if I get overheated, I reach into the freezer and toss an ice pack around my shoulders. Also, if I’m reading the recipe over again and again I don’t have time to dwell on my issues!
  11. 10 years later...back again.

    I know, tell me about it. My insurance will gladly pay for countless ER visits but refused all tilt table tests saying they were "medically unnecessary" (I still had them). I live in an area with the best hospitals but nobody here specializes in POTS or related issues. My internist looks terrified of me and suggests that I travel 3 hours when I need care. I think I make her nervous and feel like she doesn't want to see me anymore so I just don't go to the doctor. I don't mind traveling long distance to Cleveland, Vanderbilt, etc. for testing but those doctors don't take you on as a patient, they just give a diagnosis and suggestions and then help out the next poor soul. My neurologist said she wished she could help me and a local geneticist sort of made me feel crazy for even coming in and refused to do any testing. However, on the positive side I have my wonderful EP but at this point all he can do is hold my hand and check my EKGs when I've been hospitalized (he reassures me that my heart is sound and that really helps but there's nothing he can correct). A rheumatologist found nothing wrong with me but he took me seriously and said I definitely had POTS and referred me to a great doctor at Johns Hopkins to rule out Sjogren's. That doctor was wonderful and suspects EDS so I'm hoping I will have some answers really soon. However, I'd give my right arm to find a doctor I could see when I have issues. For instance, I am now getting weird spasms in my legs as well as a squeezing sensation every once in a while in my upper arms and odd pains in my head and I suddenly cannot lie down on my left side or else my heart skips beats like crazy. If I go to the internist, you can guess how that is going to play out, right?
  12. MAYO or Vanderbilt? Which would be best?

    Hi SammyJo, When you say you were in the Vanderbilt research study do you mean they checked you in sort of as a hospital patient and ran a battery of tests on you? (I've seen this mentioned on their website). I only was seen there as an outpatient last year, not in the research study. I came in for a bit of autonomic testing which was followed by a very long consult. I was given a list of 3 different medications to try (starting with the most benign - the others were just in case the first one didn't work). I was worried about the meds affecting my nightly heart block so I asked if they could give me a heart monitor and they did so they were able to see that being on the meds for a month didn't adversely affect me. All in all it was a very good experience but I still don't have any answers about why this happened to me. Have you had any autoimmune testing? I'm currently in the process of trying to rule out Sjogren's and during that testing I was urged to see an EDS specialist because they suspect a hypermobility syndrome (but the wait for that is so long that it won't happen until at least the summer of 2018).
  13. allergies, asthma--do you take beta blockers

    How bad are your allergies? I was initially told I might benefit from a beta blocker but then a second doctor said I shouldn't take them because I have anaphylaxis and if I needed my epi-pen, I might not respond to it or might need a higher dose. I was given something else to take and never tried the beta blockers.
  14. Have several questions! Can anyone please help??

    Wow, FairWy, we have a LOT in common (except I was never one for exercise - but I was always too thin so it didn't matter). My worst symptoms also happen in the morning (usually on the way to work), during showers, bending over, and raising my hands is a definite no-no. I think I'm worse in the mornings because I wake up with low blood pressure and haven't eaten or drank anything for hours (during the day I eat and drink non-stop). My throat feels as dry as the desert when I wake up. Most times my body gives me a warning I'm doing something it doesn't like and if I stop what I'm doing I'll be ok. I'm not sure if you are male or female but my worst nighttime symptoms only happy right before my period - that time is **** for me. I'm going into that period now and I'm actually terrified to fall asleep because who wants to wake up disoriented and having a heart rate of 175? Have you ever had a cardiac ablation? I had one in about 2001. This was way before my dysautonomia symptoms started. What happened was one day I was at work and I took a bite of my sandwich and all **** broke lose. I thought I was having an allergic reaction and then a heart attack. I couldn't walk or really talk and they called me an ambulance. Of course, I was fine when I got to the hospital. Took them a while to figure things out - people accused me of being "nervous". Every workup came back normal and the cardiologist said I had only a 1% cahnce of having it so he put me on a 30 day event monitor. I got so frustrated when it didn't happen again but suddenly on the 29th day of wearing it all **** broke lose. After that it happened every few days (heart rates of 210-230!!!!!). Turns out I had AVNRT (AV nodal reentrant tachycardia). It was "fixed" with an ablation. I did good for a while, had a couple of kids (no problems during pregnancies) but then the tachycardia (to a lesser extent) crept back - mainly at night but I lived with it because they didn't find anything wrong. The tachycardia wasn't that bad so they told me I should try to live with it. I did but several years ago it got really bad and I had light dysautonomia symptoms (just didn't know what it was). I had another ablation about 2-1/2 years ago. At that time I was told I had a high atrial tachycardia. Then the dysautonomia really started. My EP suggested I try Ivabradine if the Methyldopa doesn't help me but I've been a bit scared to stop the Methyldopa because I've improved a lot but whenever I have a set back I think about trying it some day. Do you feel the Ivabradine helping you? Other than feeling like falling apart, they tell me that I'm in great shape (other than bradycardia - heart rates as low as 24 during sleep) and heart block. My heart is otherwise perfect and I ace all the regular cardiac testing. Sometimes I wonder if the dysuatonomia was somehow caused by the two ablations.
  15. What Would Your Yard Sign Say??

    I went to the ER today and all they gave me was this lousy hospital bracelet.