HangingByAThread

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  1. 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?
  2. 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).
  3. 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.
  4. 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.
  5. What Would Your Yard Sign Say??

    I went to the ER today and all they gave me was this lousy hospital bracelet.
  6. Do You Have A (Emotional Or Otherwise) Therapy Animal?

    Unable to have a dog and allergic to cats so I bought a parrot 3 years ago when I was spending most of my time in bed. He's a turquoise green cheek Conure and he takes my mind off my issues.
  7. What's for Lunch Today?

    I just polished off a Chipotle steak burrito, minus most of the rice (1,330 mg sodium), to be followed in 2 hours by the chips and guacamole (760 mg).
  8. How to stay positive

    I read the The Dysautonomia Project book and highly recommend it. Also, Together We Stand: Riding the Waves of Dysautonomia was also very informative. However, I'm also looking for a book that's less about symptoms and more about accepting your new life. I guess something more along the lines of living with a chronic illness so I'm going to check out the suggestion above. It took me a while to get there, but now I try to thank god every day I wake up breathing. I've had to lower my goals - wake up breathing is one and getting to work is another biggie. Some mornings I wake up stunned that I'm still here considering how much my heart was acting up the night before. What also helped was a lot of friends in my age group that were totally healthy started dying so that has helped me remain positive. A co-worker of mine recently died about 4 months after being diagnosed with a very aggressive - she left behind two small children . I think of her every day and my goal is to hang in there for my children. I try to think that every day is a gift - some days it feels like I've been handed the booby prize but I'm still breathing and that's all that counts. I'm sorry you are going through so much turmoil, Nan. The only thing I can think to do is to try to educate your husband about your condition so he can see it more from your eyes. Mine wasn't always the most patient (I have to admit, if I didn't experience this first hand I wouldn't understand it either) but by having him come with me to the major appointments, I think he gets it a bit better. I'm lucky in that he likes to drive (I can no longer drive) and doesn't mind taking road trips to new doctors. Since we didn't have a lot of time or money after the kids and me not being so well for years we haven't gone on vacation much so when I had to take medical road trips, I tried to make them fun and talk myself into thinking I was going on a trip. (It sounds screwed up but if it wasn't for the Cleveland Clinic trip I never would have gotten to see the Rock & Roll Hall of Fame or the Christmas Story Museum. My trip to Vanderbilt enabled me to see the Johnny Cash museum and a full-size replica of the Greek Parthenon. When we went to Johns Hopkins our first stop was at some rinky-dink library to see a bronze statue outside of Frank Zappa's head. I know this sounds odd but I find it helpful to laugh at myself - it is better than crying (but I do a lot of that too - usually by myself at night). I have a sister who is also going through a host of medical issues - not dysautonomia but autoimmune issues, possibly MS - and we just look at each other and shake our heads and think "how the heck did this happen" I personally don't know anyone who has seen as many doctors as I have or travelled all over to see them. Try to find something beautiful and meaningful about each day - whether it be a book you can get into, a tv show, making a craft or enjoying a piece of cake. I try to focus on the little things because that distracts me from the big picture (such as how the heck are we going to pay all these doctor bills and the fact that my credit card is maxed out). The other night I was really tired but the bed sheets were on for what seemed like forever so I used up every last bit of energy I had to change them (I was a bit p.o.'d that my husband would never do it) but then I lost my attitude and sat on the bed and enjoyed the smell of my new crisp sheets and a bowl of yummy guacamole while watching an old movie. When I come home I sometimes, if I can, I walk a tiny bit out of my way so I can pass this big tree where all the birds are singing in it every evening. It really helped me to lower my standards and find joy in little things.
  9. Have several questions! Can anyone please help??

    Hi FairWy, I'm no doctor, obviously, but will try to answer these questions with what I experience with my own symptoms and things I've picked up along the way. Please note that with Dysautonomia the only thing we all have in common is that we are all so very different. I've had heart/lightheadedness/memory and sleep issues going on since last November. I'm not going to go into any major detail right now but I am starting to suspect pots or dysautonomia of some sort. My electrophysiologist follow up appt is in a few weeks and answers to some of the following will help me in deciding what to bring up with him. Thanks so much!! Do pots symptoms have to be 24/7? Everyday? Only active during certain hours of the day? I have some variation of symptoms every day but nothing is constant. Some days are worse than others. Has anyone had a period of time when the symptoms disappeared for a month or more then came back? Unfortunately, no, I haven't Is it possible to experience pots symptoms sitting for extended periods of time, primarily lightheadedness? I'm at work right now and have been sitting for a couple of hours without getting up. I'm getting pretty lightheaded (my blood pressure tends to be low when I'm sitting quiet). I'm going to pop a salt tablet and then take a walk to get my circulation going. Can lightheadedness be present without tachycardia? Yes. I have lightheadedness more often than the tachycardia. Does anyone experience a pulse after sitting for awhile that goes up/down (not in a single beat, but over 30 sec), from say 70s-100s or 60s-90s then back again, occurring over and over for 30+ min? Never checked. Is pots worse standing completely still then walking around gently or doing easy house work? The "kiss of death" for me is standing still (like on store lines, while waiting for my children to try on clothing in a dressing room, or food shopping (I do ok for a while but if there's a big line, I need to sit down). I can walk around gently for a while but need to keep sitting down every once in a while. House work was becoming impossible for me - I would sweat bullets but since taking meds, salt, compression stockings, etc. I can now get stuff done but I use a dishwasher instead of standing still at the sink doing dishes and I still get pretty sweaty using the vacuum. Funny thing is that if I stay home and do light house I'm ok. My ideal day is a weekend where I do a little house work, then load the dishes, sit and watch tv with my feet up, then fix myself some food to eat, then sit on the recumbent bike and read a bit, put the laundry in, etc. (as opposed to going to work). I think the key for me is varying my positioning every so often and not doing one thing for too long - this prevents my heart rate from being too low or too high and my blood pressure from being too low or too high. Also, I can eat and drink all day long and control my temperature (not get too hot or too cold). Did anyone start out being diagnosed with pots after having a good fitness level? Were you able to stay on top of your fitness (at least maintain if even at a little lower level) despite high heart rates? I never was into exercise. Does anyone have nocturnal tachycardia, frequent urination, confusional arousals? YES!!! this is the most horrible part of all of this for me. I will wake up one to two times a month with horribly scary tachycardia that lasts for a long time. I wind up terrified and barely able to move. I keep a glass of water on my nightstand and a cold can of seltzer nearby. When I am woken up I grab the air conditioner remote and blast it. I sit up and put the cold can on my neck. I used to have to get up to pee all night long until I followed a Cleveland Clinic handout that said to elevate the top of my bed by 6 inches. I bought metal risers and I was finally able to sleep through the night. I can't remember the medical reasoning for it but the doctor said my body would produce less urine. Is it possible to have a milder pots (or well controlled) where most days can be doable just with tachycardia and a mild lightheadedness, brain fog and fatigue? I think I fall into this category. Everyone agrees I have Dysautonomia and Orthostatic Intolerance (among other things) but depending on the doctors I've seen I either have "POTS", have "POTS-like symptoms", have "Orthostatic Intolerance with Inappropriate Sinus Tachycardia", have "both Hyper Vagal and Hyper Adrenergic Autonomic issues" or have "Delayed POTS". Vanderbilt didn't even want to give me a diagnosis of POTS because they didn't want to "pigeonhole" me into a category and prefer to treat my symptoms. I've had 3 tilt table tests and only had horrible issues with one (was bedridden the entire day), but failed the poor man's tilt table test at home several times. I saw many doctors and it was a long journey but I noticed that I improved over time. Little things like salt, compression stockings ALL day, tilting the bed, recumbent bike daily (even if I can only handle 5 minutes some days) really made a difference but I have to be consistent. I hope your EP is able to help you. My EP is wonderful but there's really nothing else he can do for me other than to hold my hand here and there and send letters all over to get me seen by specialists.
  10. Need Specialist in TN

    I definitely agree. If you can get to Nashville it would really be worth your while. I went to Vanderbilt last year (we drove for 2 days, stopped for the night along the way). It was well worth it but I had to wait months for an appointment so I used them as my second opinion (was very glad I did because I still can't find a local doctor). Their research/testing and the large volume of patients they see make them experts in Dysautonomia. It was nice to speak to a doctor who didn't look at me like I had two heads (because he's heard all my weird symptoms before). If you really want to get the most out of it, you should gather up all your records and send everything over ahead of time. Then follow up to see if there are other specialists you might be able to see. I found the nurses there very helpful before my visit but I didn't need to see a bunch of specialists because I already had 3 days of cardiac testing at another facility a few months before I arrived.
  11. BIRDS and BEES and BUTTERFLY and Trees

    Hi Debbie Rose, That's so horrible that you had to re-home your precious Skye. You must have been heartbroken for quite some time. I had a few birds growing up. We had to give away our pair of African Greys because my sister was allergic to them. When I was about 12 my parents let me have a blue and gold macaw. I loved that crazy bird but once I started working she hated me and bonded to my mother. When I got married my parents kept the bird but it hated children and nearly bit the finger off my daughter. When my parents moved into a house with 2 floor instead of a ranch, she screamed non-stop for my mom and my dad said enough is enough and they gave her away. Unfortunately, the new owner refused contact with us shortly afterwards so I don't know what became of my bird. My husband has a ton of allergies and I can't be around the dander of cockatoos so I did some research and decided on a green cheek. He doesn't have much dander at all (and he bathes every other day). I can nuzzle my nose up to him without any problems. He also has a less powerful scream than most other parrots - that's mainly why I chose him.....I just couldn't deal with having to give away another bird because the neighbors in the apartment next door might complain about the screaming. If I had my way, I'd love to have another macaw. I think they are much calmer than green cheeks. My little guy has this obsessive-compulsive thing about trying to chew holes into my shirts or pick off buttons and freckles and I can't have my hair in a hair tie around him and I can't really have him sitting on my shoulder because he will start crawling around my shirt and chew bra straps. I could warn him 1,000 times not to do something but he's determined. The best part is that when I leave the apartment he makes the smoochy noises and says "give me kiss kiss" His voice isn't the clearest but he's very good at duplicating noises. One day I went to toss out the trash down the chute in the hallway and he made the exact same sound as the squeaky door on the chute. Then the next morning when I went to get water to take my meds, he was still covered but imitated the squeak of my sink-mounted water filter (seconds before I even got to the sink). He's too smart for his own good and it is probably a good thing that he doesn't say a ton of words because he'd probably rat us out. As it is, whenever my youngest is on technology or sneaking tv in the living room instead of getting ready for school, Buddy faces her and just screams and screams to tattle on her. He also imitates the vacuum - he makes the same high-pitched noise as the vacuum makes when you get it clogged by sucking up too many things. Life is never dull with a parrot! That's a great hummingbird story. What did it feel like? I know my little guy has such a fast heartbeat - I bet a humming bird's is so much faster but I'm only guessing. My sister lives in the suburbs. There's a very large murky lake behind the house. It is surrounded by old fallen trees and a lot of brush. The lake is full of lily pads and in the warm weather the flowers on the pads are beautiful pink. There are usually a ton of dragonflies flitting about as well. One lone loon stops by every so often but is usually stays so far out on the water that we can't really see much of it. We like to walk to the water's edge and watch for bullfrogs with the kids. Usually they can hear us coming and jump right into the water so we don't see much - only hear them but it is cool if you can see their big eyes under the water. Last weekend we saw a really nice cardinal - it seemed like its red color was much more brighter than any other cardinal I had ever seen. It was so beautiful but it took off immediately and hid in the trees. I love birds and flowering trees.
  12. I'd like to hear back from folks who have had the sjogren's lip biopsy.............were you able to tolerate the local anesthesia? I was seen at Johns Hopkins and was told to come back for the lip biopsy. Only problem is that I haven't had local in ages. About 8 years ago (before all my issues started) I had a very bad time at the dentist having a filling (my heart was beating out of my chest and I got very panicky). Since then, I've had my next two fillings without any medication whatsoever (the pain wasn't a problem at all for me). The doctor wants to use lidocaine and epinephrine. I'm thinking the epinephrine is a no-no (I can't even tolerate caffeine) but am not sure about the lidocaine. I know I'm being a baby about this because I've been through a million other tests without any issues but I'm absolutely terrified about having the shot and totally losing it. An ENT will perform the biopsy and they don't put people on heart monitors or really monitor your vitals.
  13. 10 years later...back again.

    Angelloz, the medication I take is Methyldopa. I honestly didn't expect it to do anything to help my migraines but it is like a miracle drug in that regard. Prior to that I had tried a few other things as well as Topamax but that just made me dizzy and didn't help much (I was diagnosed with migraines, ice pick headaches and premenstrual migraines). I used to get these horrible stabbing headaches where the veins would bulge out of my head so I think the Methyldopa relaxes the veins and helps increase blood flow but I had never heard of using it for migraines....although I don't this its that strange because I have a friend who is healthy other than migraines and she takes a daily beta blocker to treat them. You mention low blood volume.....do you salt like crazy? This has helped me too. A few days ago I made myself a healthy lunch rather than grabbing my usual salty Chipotle burrito and chips and was suffering so much all afternoon. I realized that my body couldn't handle the lack of salt (I was taking my salt tablets but my choice of food was too low in sodium and that really affected me - made my head hurt and I got that really spacey feeling like I couldn't stand).
  14. 10 years later...back again.

    Hi Firewatcher, Sorry you are back but knowing that you had a period of improvement gives me something to look forward. I went to Vanderbilt last year and am Hyper too. I'm curious to know if they put you on Methyldopa or something else and if you think that helped a lot? I tried to start the Levine protocol but cannot graduate from the recumbent bike to an elliptical so I sort of gave up and just do the recumbent bike (I have a combination piece of exercise equipment in the living room). I became a bit lax with it and noticed the symptoms worsen a bit when I'm lazy so I've gotten a bit better at trying to do it every day - even it if it just a little bit (I read books or mindless magazines on the bike so the time flies). I think you have actually inspired me to take out my instructions and try the protocol again. I'm also in peri-menopause (that's when my issues started) and praying that menopause will bring some relief. The days before my period are the worst for me and every month it is like reliving a nightmare. The only good thing is that the medication really cured the migraines (I've had them since I was a teenager but nothing else ever helped). I still get headaches but they are the kind you can manage and don't feel like you are going to die. I have the same issue as you - I can't find a doctor in my area that is an expert in this (even though I live in a big city that has tons of great doctors and hospitals for other medical conditions). At first I thought my internist would work out because she seems knowledgeable on other issues and mentioned having a couple of other POTS people but now she keeps telling me I need to find a specialist (I get the feeling she is scared to treat me) and she can't understand how someone who is having a flare up cannot drive a couple of hours to see a specialist when they are ill. If I come in complaining that my blood pressure was through the roof, they take my reading with me sitting down and say it is fine and I have to beg them to take it standing up - I feel they don't get it at all and treat me like a regular patient. The worst part of it was when I was called for jury duty and asked the doctor for a note saying I need special accommodations and she actually told me no. (I wasn't looking to get out of it, just to have accommodations to put my feet up, eat and drink and take bathroom breaks). That made me realize that she's clueless about how this affects our daily lives. By the way, I had to sit there one day and it was a horror show. The first thing I was told was I could not put my feet up (and then I had such bad tachycardia and the shakes because I was forced to stand for a long time). I could barely get myself home afterwards, was nearly bedridden all night and had to call in sick to work the next day. The lack of local support is awful. It is great to be able to travel to get a diagnosis but I feel there's nobody in my corner for the day to day problems. I thought I had found someone - a local doctor whose specialty is blood pressure issues but the office said he had seen too many POTS people and wants to focus on high blood pressure so they aren't taking any new patients.
  15. What meds have worked for "hyper" dysautonomia?

    Hi Jojo79, Sorry you are you are having such a rough time and in the hospital. I'm hyper and also experience a lot of what you mentioned. My blood pressure is usually very low (systolic of 98 but I had periods where it went down to 80) but goes pretty high when I'm standing and walking. Vanderbilt is big on prescribing Methyldopa for hyper. I'm not sure about you, but I would get the weird head sensations when my blood pressure was too low. I would have to say the very worst part for me was the adrenaline surges. Nothing I've ever experience could be as bad as they were. I think I'd rather be lying in the floor and having a tachycardia than have those surges (what made them even worse was that everyone would say stupid things like "calm down" or "you look manic" or "maybe you are having a panic attack). I also had a LOT of chest pain. Since I wake up with low blood pressure, the doctor prescribed salt tablets to get my blood pressure a bit up there (you can buy them over the counter) before I can take my Methyldopa. Methyldopa made the adrenaline pretty much non-existent and I didn't realize how bad the symptoms were until they died down. Now I can finally sleep at night and am not panting when I walk. I used to take my daughter to school with one hand clutching my chest and then have to lean against the side of a building to rest because my blood pressure was so high while walking and I would sweat profusely. The meds pretty much stopped all of that. Methyldopa is a central adrenergic inhibitor (they use it to treat high blood pressure and hot flashes) and is in the same class of dugs as Clonidine so I'm assuming it works the same way (I know nothing about Clonidine except that I've been told it has more side effects). They work by preventing your brain from sending signals to your nervous system to speed up your heart rate. I was prescribed the lowest dose pill and told to take half but can only tolerate 1/4 but that seems to really help me. My heart doesn't have to pump as hard and I don't get all the adrenaline rushes (they used to be so bad that I'd jump sky high if someone rang the doorbell or a car honked its horn and I couldn't sleep at all). Another plus is that the chest pains are completely gone! I was also advised to put the head of my bed on 6 inch risers when I sleep and that has helped so much (along with compression stockings and salt tablets). I absolutely cannot sleep when lying flat - it causes adrenaline rushes and muscle spasms in my legs.