HangingByAThread

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.

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).

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.

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.

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.

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.

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.

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).

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.

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.

I also went to Vanderbilt and had a great experience. However, unlike Clb75, I was able to be seen by different specialists during my visit. I spent one day there and had autonomic testing, then saw a neurologist, followed by a dysautonomia specialist. You need to tell them you are traveling and would like to see as many specialists as possible during your visit. As for Mayo, I can't give an opinion because, although my electrophysiologist reached out to them for an appointment for me, they refused to see me (refused to wait list me either - said they had too many patients). Five months prior to Vanderbilt, I was seen in Cleveland (3 days of testing). They were also top-notch. I was also thinking about Sjogren's since you mentioned the dry eyes. I have just been to the Sjogren's Center at Johns Hopkins myself and am awaiting the results. While I was there the doctor mentioned that he sees so many people with dry eyes but a lot of them just turn out to be caused by the dysautonomia itself. Captain, so sorry you are so frustrated. I hope you find someone who will listen and can help you very soon! Please know you are not alone.

Hi Debbie, I just wanted to say that I stumbled across your beautiful post on a night I was feeling especially crummy and I found it so uplifting. You really brought a smile to my face! I meant to respond but got busy and then forgot. A month ago my husband spotted a blue jay baby on the ground in the park behind our apartment and he got our building maintenance department to give him a ladder and he lifted my daughter up and they put the baby back into the nest (we live in a big city and blue jays are rare around here). Turns out there were 3 babies in the nest and we had such enjoyment watching them for the next week until they were old enough to fly away. I love birds and grew up with parrots in the house. When my heavy symptoms first started and before I was diagnosed, there were days I could barely get out of bed to take care of my kids. Every day felt like a nightmare. Since we aren't allowed to have dogs and my hubby is allergic to cats, I researched a parrot that wasn't very loud. I bought myself a tiny guy called a Turquoise Green Cheek Conure and found a pet shop that handfed them with a dropper from the minute they hatched. We would go to the shop every weekend and handle the birds until we found one that we bonded with and when he was old enough, we got to take him home. Buddy is the love of my life! When I was at my worst, I HAD to get out of bed and feed him and make sure he had clean water. At night I HAD to get up and cover him. Sometimes when I was home sick and in bed, he'd sit on a perch in my room and watch tv with me. He drives me nuts sometimes when he keeps calling "mommy, mommy" and he can get a bit loud at times or try to eat the keyboard on the laptop - he needs a LOT of attention - but it takes my mind off my issues. Buddy even whistles tunes and dances!

Hi Farmgirl85, Have you ever seen an allergist about your issue with eating beef? I ask because when I was in my 20s my allergist discovered I was allergic to beef (I always knew I was allergic to cow's milk since I was a little girl but I had never heard of anyone being allergic to beef). Beef used to give me pretty bad stomach aches........like it was impossible for my body to digest but I never made the connection until the doctor pointed it out to me. It sounds a bit crazy, but I've stumbled across a few articles lately about recent studies that show tick bites cause certain people to become allergic to red meat. Glad the smaller meals are helping you. Good luck and I hope you continue to find relief!

I have the Alivecor monitor as well and I love it (got it when it first came out and it has since been improved so I'm on my second one now). It has given me peace of mind because I can take recordings any time and then email them to my doctor or print them out for upcoming doctor appointments (being on an event monitor was costing me $50-$100 a day even with insurance). There have been times when I've called an ambulance but by the time they arrived, they told me to "calm down" and asked "have you ever been diagnosed with anxiety?" but I whip out the monitor and they are amazed (because they haven't seen one) and when they see the heart rate and EKG readings, they take me seriously. There have been times that by the time I got to the ER, my heart is totally fine but I'm dizzy or have the shakes, and I just whip out my monitor and the hospital can read the EKG and see what my heart was up to. It has saved me a ton of money because I don't have to go to my EP a million times and when I do see him, he can review all the EKGs and realize that it is "more of the same" and that I haven't developed any additional heart rhythm problems. Also, if I'm really having a bad episode and go to the ER, they don't keep me there all night - they can email my doctor's team the reading and then I eventually get the go-ahead to go home and don't have to be kept for observation. I think the best thing about Alivecor is that all the doctors have no choice but to take me seriously and nobody questions whether I'm anxious or it is all in my head.

Hi Stooshiecat, You mentioned your blood pressure being normal when the doctor checked you, but you didn't mention what it is now that you are on the propranolol. I was thinking maybe the medication is dropping your bp down too low (I get in a real fog and feel like sleeping all day when my bp is too low). I think the diary - or a time line - is a great idea. I also used to print out a monthly calendar and note my symptoms because it is hard to remember all of that during doctor appointments. I was told to stop meds 5 days before my autonomic testing (beta blockers, allergy medication, blood thinners, etc.) I used to get the line about it being "just anxiety" as well. Fortunately, years before the POTS symptoms started I did have a fixable heart issue but before diagnosis of that I was told by a bunch of doctors, EMS and emergency room staff that it was just anxiety but I knew it wasn't. Eventually after wearing a monitor for a whole month my issue was found (and then corrected). Then when I had my thyroid issue after giving birth, I was given the same load of nonsense "you're just an overtired new mother". No, it was Grave's Disease and could have killed me. By the time the Dysautonomia symptoms started and I was told it was anxiety by various doctors, I decided to check in with my EP, who performed my first ablation and, since he knew me well, he took me seriously.

Ugh, sleep............I used to look forward to sleep but it poses such problems lately. I was a stomach sleeper but then when I became symptomatic I could no longer sleep on my stomach due to TREMENDOUS pressure in my head, swishing noises in my ears, etc. I tried lying on my back but that made me feel pretty horrible (after testing I was told this is a no-no form). That left side sleeping. I have full body pillows set up to help prevent me from rolling over onto my stomach and it helps my legs not cramp up so much. Now I noticed a few weeks ago that I can no longer sleep on my left side. If I do, within a couple of minutes I will get an increase in heartbeat and feel skipped beats. I am forced to sleep on my right and it isn't very relaxing to stay in that position all night. I tried every different type of pillow combination but still wake up with my arms and hands very numb. I haven't had time to research this yet but I'm wondering why I can only tolerate to sleep on my right side - anyone have any insights? By the way, artsystacey, are you still havint issues? Have you ever tried putting the head of your bed on risers?

Hi Bluebonnet08, Thanks so much for your response. Sorry you through a nightmare experience as well. No, I've never tried saline IVs (other than the emergency ones I'd get if my blood pressure dropped too low (before I had my diagnosis and knew what I was dealing with) and I had to go to ER). Unfortunately, it has been nearly impossible to find a specialist where I live. I've been lucky enough to travel to Cleveland and Vanderbilt for the testing and initial meds but I'm just sort of winging it myself here (checking in with my endo. 4 times a year and my EP if I have a major cardiac episode). I do pop some extra salt tablets and extra water before I get my period (because my blood pressure gets even lower than normal). By the water retention I get during that time, I think that does help take the edge off a little. I complained to my endocrinologist recently about how tight my ring gets and packing on 10 pounds and he just looked at me with a smile and said "it's water retention - that's exactly what you want"

Hello. I was wondering if there is anyone else who suffers miserably right before their period (I'd especially like to hear from HYPER ladies or ladies with Inappropriate sinus tachycardia)? Mine is coming any minute and, among other things, I have been plagued with extra adrenaline surges for days. I get so hot (my usually low body temperature can a actually go up a couple of degrees). Last night was the absolute worst!!! - if every night was like that, I honestly don’t think I could go on any more. I had non-stop adrenaline rushes/rapid heart beats that went off every 30-60 seconds for about 7 HOURS. They got even worse if I tried to lie down (mind you, I have my bed on an incline already and have ton of pillows to prop me up as sleeping supine is a no no). It got so bad that I just had to sit totally upright in the bed (supported by all the pillows) and watched tv for hours in the dark, hoping to take my mind off of my body and hoping that I’d just eventually drift off to sleep. All the while I'm hoping I don't wake up to a 10-15 minute debilitating episode of 150-175 bmp tachycardia (that happens about once a month around my period). I think I finally was able to crash but it was about 2:30 in the morning and then I woke up at 6:00. I called a car service to take me to work today because I don’t want to run out of sick time but I feel like I’ve left my brain behind in the bed. I'm miserable, my head hurts and I’m extra clumsy (walking into things/tripping over my own feet), I forgot to put on half my make up before I left the house and I had no energy to make my lunch. I’ll be 50 years old and pray every month that this will be my last period but my endo. runs tests every so often for the last few years and says that I’m nowhere near menopause. Once I actually get my period for a day I’ll go back to the “normal” regular symptoms of IST and Hyper POTS so at least there is light at the end of the tunnel (however, the older I get, the worse these symptoms get). My gyno. wanted to put me on birth control but we have several blood clotting issues in my family (and I could never tolerate the pill when I was younger). I take Methyldopa in the morning and it helps dampen the adrenaline surges, but due to heart block during sleep I am only allowed to take it in the morning. Is there anyone else in the same boat each month and, if so, how do you deal with it?

Hi SonM, I'm actually having a pretty good day today and I hope you are as well. Yes, an hour commute is long (half the commute is the bus and the other half the train) but the actual distance to my job from home is only about 4 miles, if you can believe that! I tried every variation you could imagine including walking and then getting on an express bus but there are never any seats. I just can't stand idly during the commute or I get really sick - better to creep along slowly in an air-conditioned seat. I happen to live in a big city so traffic and congestion make the commute so long. The folks I work with that live in the suburbs have it even worse (2 hour commutes - I could never do that). Today I cheated and called a taxi to work and it was wonderful but at $15 it can get pricey if I do that all the time. My commute used to be easier but the mayor is trying to get cars off the road by putting bike lanes in all over and that sort of backfired by making it take forever to get anywhere during rush hour (as you can probably guess, no way could I ride a bike). Most people don't know that I have all these medical issues either. For years I had tachycardia and a couple of ablations and people knew I had something going on because I had no choice but to wear a 30 day holter monitor (they were a lot bigger 10 years ago and difficult to hide the wires). I think most people just assume I have heart issues - it is often too hard to explain the POTS symptoms. My children are 11 and 14. It hurt me at first when my 11 year old said that I was always sick but then it actually made me quite sad because I remember being a kid and my mom had severe attacks of migraines with sky high blood pressure. When she had a flare we weren't allowed to make any noise but we were horrible kids and didn't understand the severity of it. Sometimes she got so bad that she had to go to the ER and then I'd feel immense guilt like I did something to make her worse and I would have this fear that she might have a stroke and die and it would be all my fault. I never want my daughter to think that way, although I need her to understand that when I'm not feeling well I can't take her tantrums or her fighting with her big sister. Two months ago I had a major episode of tachycardia after lying down for a nap. It went on for about 10 minutes and then I got the spins and bad chest pain. I was literally on the floor and thought I was having a heart attack. My eldest called 911 and then ran out to meet the ambulance, leaving my younger one terrified on the phone with the operator (my husband was out food shopping). The ambulance took me and my older child had an asthma attack from the fear. My youngest was terrified and all the neighbors came running out to watch the ambulance take me away - it was super embarrassing. I felt so guilty that I put my children through that. Most of the time the violent episodes happen on my way to work or during the night when I'm sleeping and the kids are already in bed so they hadn't seen me like that. I never thought about it until she brought it up but I recently realized that my 11 year old has only known a sick mother (I was very ill and lost a ton of weight after she was born - and then was finally diagnosed with Grave's Disease (I couldn't be around her for about a week after having a radiation treatment on my thyroid). Then I had bouts of tachycardia, then was in the hospital and then on iv antibiotics for sepsis, then there was the summer that the flu went into pneumonia and I was out of work for 2 months, then I hurt my neck and could no longer pick her up or bend down to bathe her, then I had worsening of cardiac symptoms and my second ablation). Reading this I realize that I sound a lot sicker than I am. In between episodes/bouts I look normal and can work. I get very close to passing out but always get the warnings so I can take action. I've been lucky to have been able to take my kids to amusement parks, Disney, museums and concerts so they are far from deprived but I do say "I'm not feeling well" ALL the time. For example, last night I was tired and worn out and my feet and ankles felt the size of an elephant and I needed to rest after dinner and put my feet up but she wanted to go down to the park with her friends and I didn't want her to go unsupervised. My husband was doing some emergency plumbing due to the sink being clogged and backing up into the dishwasher so he couldn't take her. She got really angry and started crying because I didn't take her down to the park, which I totally understand. Then I felt a little guilty. Sometimes I do feel guilty because I feel like I try to conserve my energy so that I can work and choose not to do certain things on the weekend so I have energy to clean and do the laundry and things that need to be done. I let the apartment fall into near ruin for a while but all that did was make it so that she couldn't invite any friends over because the place was so bad. Since my trips to specialists last year and the meds, I can cook more often than ever before and feel a lot better. I even started a massive cleaning/purging of junk and clutter in the house but I have to be careful to save my energy because the only thing I can count on with this condition is that there will be ups and downs. Wow, I didn't intend to type all this but the words just sort of flowed out. Feels good to get this all off my chest.

I get through vacations by not flying - my husband drives me all over (since I can no longer drive and get violently ill on planes). I make sure to wear compression hosiery and bring a ton of snacks. When I'm in the car I put my feet up on the dashboard once in a while. I find that even though I am most symptomatic and have lower blood pressure in the morning, once I get my bp up and get going, I function better than at the end of the day so I schedule important things early in the day when it isn't as hot out and lines aren't that long (waiting on lines provokes the most symptoms). If I take my kids to an amusement park or a concert, I make sure there's a place I can sit down. When it is a place I'm not familiar with or a walking tour or museum, I bring along a seat cane to sit on if need be (I find that helps me more than sitting on the ground). I save the evenings for low key things like hanging around the pool.

Welcome Farmgirl85, I'm sorry you are feeling so horrible. I was thinking the same thing as BuffRockChick (postprandial hypotension). I get that as well but it is mainly after I eat a big meal or something with a lot of carbs/sugar (blood pressure drops and I go from being extremely hot to freezing). I also have issues in the shower (so no long, hot baths/showers and definitely no hot tubs) as hot water increases vein swelling and leads to blood pooling. I used to have horrible chest pain as well (where I thought I was having a heart attack) - it was mainly on the left side. I wore a lot of holter monitors but my doctor never saw anything bad happening with my heart during the pain so I still can't figure that out. A couple of times it got so bad at work that I couldn't help but clutch my chest and let out a curse but it has gone away since I was diagnosed and started meds, etc. You mentioned throwing up...........have you ever had your blood sugar checked? I ask because shaking after a meal can mean a problem with your sugar. I was diagnosed with reactive hypoglycemia (low blood sugar after a meal) so now I have to eat small meals and/or snacks and can't let more than 2 to 2-1/2 hours go by without eating or else I will get violently ill (basically, I stuff my face all day long and always have salty or protein snacks in my bag. I have to eat carbs in moderation and if I do so, it has to be with protein. If my family is eating dessert after a meal, I have to wait a bit after my meal (when my blood sugar has tanked) and then I don't have an issue with it - it actually makes me feel better. Good luck on Monday with your tilt table test! I hope the doctor is able to get a lot of information that might help ease your symptoms. It must be horrible not being able to eat and losing weight on top of everything else.

Cleveland Clinic was really top notch for autonomic testing as well as cardiac testing.

That's right, I had to wait about 9 months each to see specialists at Vanderbilt and Cleveland last year - and Mayo refused me outright, said they had too many requests for appointments so they wouldn't even wait list me. Maybe you can find a provider who is willing to work with you regarding the expenses (Cleveland was so good - I didn't even really have to ask, they set up a payment plan so I pay $75 a month). You should definitely ask. Good luck, Shood, I hope someone can see you while you are here in the States!

Hi Steph89, I too have IST with hypotension (but much higher blood pressure when I stand too long). I take salt tablets like crazy so I can tolerate Methyldopa (I cannot take beta blockers). I know what you mean - I couldn't live without my compression stockings!!! At first I was prescribed the knee-high ones but I still had a lot of swelling at the knees, which became quite painful. One of my doctors (who had participated in an aerospace medical research project for the space program) told me I needed to buy the full-length pantyhose and what a difference! They keep a lot of blood in the upper portion of my body and for the first time in a long time I actually don't have a ghostly white complexion. I felt really embarrassed wearing them at work but then discovered that Juzo makes a line of super sheer ones that look like pantyhose (I wear those at work with my skirts and nobody knows). I'm so used to them that they don't even bother me anymore. I went to Disney with my kids 2 years ago and thought I would die out there in the heat. I found that cooling towels really work around my neck but I don't think I could last long living in Florida (the humidity really gets to me). During my commute to work I carry a cold bottle of water that I can drink as well as apply to my neck (a cold can works better than a plastic bottle). Carrying an ice pack to apply to my neck helps as well.

Yes!!! For as long as I can remember I've always bruised easily. In the last 5 years or so I feel it has gotten worse. My legs are always covered in "mystery" bruises. There were a few times I remember smashing into something and really hurting myself (like the corner of the bed) and having a huge egg type bruise on my leg that turned all colors of the rainbow and lasted way more than a month. My blood work is always fine so I just chalked it up to being "sensitive".