Alyssa

I went to the movies tonight, and apparently that was a bad idea. I noticed that I was extra thirsty during the movie but felt fine other wise. Oliver (my service dog) kept whining at me, which he never does. As soon as the movie ended, I stood up and my vision went black immediately and stayed that way for at least 2 minutes, even while sitting. The nausea crept up on me on the way home. By the time we got home, I was so dizzy and brain fogged that I couldn't hardly make it in. The fainting spells kicked in and every time I walked towards my room, I fainted. The 30 second walk took me 10 minutes. I finally made it to my room with my HR at 210. It's better now and hovering around 120, but my vision is still a bit blurry, I'm extremely nauseous, and my whole body feels weak and shakey. I haven't crashed this hard in a while, but it's both physically and mentally taxing. I'm just ready for all of this to end, but I feel so hopeless. I just needed to vent I suppose. I'm hungry, but not sure that I can make it to the kitchen. Oliver did get me some water, so I guess that will have to do.

Thanks for all of the input everyone! I'm starting to think it may actually be DI, mostly because I haven't seen any yellow to my urine in several weeks. It is always crystal clear, looks like pure water. Is there any reason for the sudden onset? I don't remember always being like this, seems like it started right around the time that POTS began.

I haven't been tested for DI yet, but I know I need to. I'm in the process of switching up doctors and am currently back at home with my mom while I can't work - that's a whole 'nother issue!! She doesn't seem to take my symptoms very seriously, which makes getting anything looked at pretty difficult.

I made the mistake of drinking a full glass of water around 8 pm last night. For the next 6hrs, I was having to pee several times per hr. It is now 2pm the next day and I haven't had anything to drink since last night, but I'm STILL going almost every hour. Some days it's worse than others, and this is definitely one of the bad ones. I don't want to have anything more to drink because I won't be able to do anything but run to the bathroom to pee. I'm just getting really frustrated with it as it had me up all night last night and I still haven't been able to get in any deep sleep. There has to be a way to get some relief, it's been like this for at least a year now. I'm not supposed to dread having a glass of water. Does anyone have any relief ideas? I need to talk with my doctor about it. My urine is never anything but crystal clear, which I find kind of odd considering how little I tend to drink (I know, shame on me!!)

Thought I would add in a little. Not sure what type of POTS I have. I suspect that I have hyperPOTS, but that has yet to be tested. I also have asthma, but it came on before I had POTS (at least I think it did). It hit me all of a sudden. I woke up one day unable to yawn and it went on for 24hrs. Went to the doctor and they did chest xrays which showed that my lungs do not fully expand - ever. I have about 80% lung capacity. It was while I was in the dr's office that I had my first asthma attack. They sent me home with a ventolin inhaler, and another one that I don't remember the name of. For the next few months I was constantly in and out of the ER with asthma attacks that weren't responding to a rescue inhaler or a nebulizer (status asthmaticus). We're talking 10+ attacks per day without any known cause. It was extremely scary and at one point I was hospitalized for 3 days because they couldn't get my airways to remain open longer than a couple of hrs at a time. I couldn't leave my house because I had become so reactive that every little thing would cause my airways to close up. I got in with a good pulmonary group and they put my on a dulera inhaler - 2puffs 2x a day, along with my good ol' ventolin inhaler. The Dulera was literally a life saver for me, although it is EXPENSIVE (roughly $200 with insurance). Around this time is when I noticed my POTS symptoms - which I believe I have been experiencing moderately since childhood. With every bad POTS flare came a bad asthma flare. My cardiologist reluctantly put me on a cardio selective beta-blocker due to the severity of my OI (roughly 30 faints per day). The BB has been horrible for my asthma, and I personally recommend anyone with bad asthma to stay clear. This is where I am today. The asthma was under pretty decent control until I began the BB - I'm back to using my rescue inhaler several times per day, which is likely going to cause me to build a dependence on it (sigh). Also, I use a special pillow made for people with asthma. I'm back to the docs next week and hopefully will get some answers. I'm curious about MCAD, as I believe it is a possibilty. ...I'm not sure that was of any help. Truthfully, I can't even remember what this was all about now. I should really be going to bed haha The joys of brain fog.

Perhaps I'm just too "foggy" right now to understand this. What do you mean by recovery time? With me, I rarely have a standing heart rate below 120, but it usually hovers around 150. Aside from actually feeling my heart beating faster and harder, I don't feel the difference whether my HR is 120 or 180. I can't really stand for longer than 1-2 minutes without feeling symptomatic, doesn't matter how long I have been lying or sitting. I'm not so sure that (at least for me) my HR has much to do with how symptomatic I feel. I can feel like crap and faint with a HR of 120, and can feel "good" at a HR of 190 and vice versa. I'm with lissy, no episodes, it's just how it always is. If I'm standing, my HR is up. The only episodes that I have are BP related. I do, however, have bad flare ups. POTS is just weird haha.

I guess I'm the odd one out! I actually feel better when I'm hungry, to a degree that is. I often don't eat until around dinner time because when I eat, all **** breaks loose! However, in the morning time, I have my vitamin drink, and drink throughout the day, so that may be why I don't feel bad when I haven't eaten.

Most of the time it's pretty obvious for me. When I'm sitting/standing my feet turn purple and swell up a little. There are other times that it isn't quite as obvious, I can feel it pooling, but I can't see it - just depends on what I'm doing.

It can get pretty bad for me, too. For example, tonight we were playing cards. I was trying to count by 5s and kept getting stuck... "5,10,15.....what's next?"

Kate, keep in mind that service dogs are not there to give emotional support. I think a lot of people get SDs (service dogs) and ESA (emotional support animals) mixed up. A SD is there to help you with the physical things that you can not do for yourself, these must be things in the home and in public. If you were ever taken to court regarding a SD, you must be able to prove that the dog does tasks to mitigate your disability, that you are legally disabled, and that the dog has undergone intense training. If you said that the dog provided any kind of emotional support, the judge would likely be quick to dismiss your dog as a service animal and would not allow it to be in the public eye. An ESA is a dog or other common domestic animal that provides theraputic support to a disabled or elderly owner through companionship, non-judgmental positive regard, affection, and a focus in life. They are however allowed in housing that does not normally allow animals (free of charge) and are allowed to accompany you on a flight. I just wanted to clear this up as there has been a lot of press lately with people claiming to have a SD and then saying that it keeps them calm or helps their depression, anxiety, etc. (Not to be confused with psychiatric service dogs, which are a whole different thing)

I just woke up, so this is going to take some serious thinking =) - syncope - BP swings - tachy (obviously!) - arm and leg jerks - twitching in muscles throughout the day - allergies galore - trouble keeping down food any time I eat - severe headaches - constant fatigue - occasional numbness in hands - random joint pains (that no one has any idea as to why) - stuttering whenever I am talking and then stand up - tinnitus (fluttering noises that other people can hear) - heat intolerance: anything above 70 makes me feel like I'm in a sauna - urinary fequency - trouble staying hydrated - blood pooling - diarrhea/constipation

I was on Paxil for a year prior to having POTS. I will say that it is a drug that I will never be on again. The first month on it was absolutely horrible, and every time they increased it, I went through the same stuff again. One of the main side effects that I had from it was severe nausea and dizziness. It's not a med for everyone, but the side effects to eventually taper down. Coming off of it was even worse. If ever you don't want on it, make sure you come off VERY slowly. I did it in a month and the withdrawals were horrible. I had permanent effects from it and experienced temporary schitzophrenia lasting about a week.

I had this problem for awhile and the doctors never saw it. Finally, my cardiologist figured it out. Lay down for 2 minutes, and then stand. She took my BP readings every 2minutes for 10minutes while standing. Towards the end of the 10 minutes (6ish mins) is when my BP started to go down. I only fainted the first time, after that, she has always been sure to have me sit when BP hits a certain point. With orthostatic hypotension, it doesn't always immediately drop. With mine, it would initially go up pretty high and then begin to plummet. These days I'm having all sorts of different results with readings, likely due to the meds I'm on.

okay, so I guess the answer to this would be to find out how many people have only POTS and still faint. Perhaps a poll is in order? I can't really find anything online regarding tachycardia and fainting aside from stuff about how people with POTS sometimes experience syncope. As far as the asthma, I think the BBs are a dangerous game for me. Last year my asthma was so bad that I ended up in the hospital for 4 days while they tried to get my airways to stay open. Every time they thought I was stabilized, they closed back up. Rescue inhalers do not work for me unless I get to them at the first sign of an attack.

Katy, I'm on the lowest dose of atenolol they offer and I really want off of it. My cardiologist was leery of putting me on a BB due to how severe my asthma is, so she did it as a last resort. It's supposed to be cardioselective, but yet it is still making my asthma act up (3-4 attacks per day with no known trigger). Will my body ever adjust to the BB and stop my BP from fluctuating? This is so frustrating! I think I could learn to deal with all of the symptoms from POTS if it weren't for the fainting. I feel like I've had to give up way too much because of it, and every time I start a new med, I get so hopeful! - sorry, just a little vent!! ETA: I wasn't aware that a high HR could lead to fainting. Docs told me that even when my HR is at 190+, without a drop in BP, I won't faint... confused =/

Woke up today and took my BP: 85/60, stood up and got 140/94. It seems I went from orthostatic hypotenstion to having orthostatic hyperstension. I'm still fainting, so I wonder if it's just randomly dropping throughout the day...?

I'm a bit confused. I was diagnosed with orthostatic hypotenstion resulting in syncope a few months ago. My supine blood pressure was within normal ranges (usually around 110s/70s) with resting HR in the upper 70s. Upon standing it would plummet to 70s/40s - 50s, resulting in faint with HR in 150s (POTS). Now I'm on midodrine (5mg 1x per day) and atenolol (25mg 1x per day) . I'm still fainting and as of yesterday, got something to monitor my blood pressure with. It's gone wacky. Supine BP: 90s/upper50s with HR still in upper 70s. Standing BP: 130s-140s/90s HR: around 110s (readings taken immediately after standing, and then 2 minutes later). What in the world is going on? Why is my BP suddenly rising upon standing and why am I still fainting? I haven't seen my BP go below 100/77 while standing (and feeling fine). I'm pretty dizzy when its high. Is this normal for those meds? I was thinking they should stabilize my BP, not make it flip around. ps:These readings were done before, during, and after taking meds. Thoughts?

at rest I'm in the high 80s to low 90s. Initial standing is about 140, any walking puts me around high 150s to low 160s, stairs 180s to 190's - this is without medication. With meds - rest still 80s to 90s. Initial standing 130s, walking 140s, stairs 160s to 180s, depending on how many stairs there are

kcmom, it's hit or miss, mostly. In other words, programs that do seizure dogs are training dogs to respond to seizures. It is said that about half of the dogs that are trained in response end up doing alerts (predictions) in the first 6 months with their client. Some programs use rescued dogs, and some breed their own. The ones that breed their own often breed the dogs that have a higher propensity to alert. It was the same with my medical alert/response service dog. He started alerting to asthma about 2weeks after getting him - likely because he sensed the urgency that we had when I had attacks (several per day). I also trained him in "pots response" and after 3ish months, he began alerting. Some dogs are just naturally more tuned in to their owners.

mdcountrygirl - glad (bad choice of words? haha) that someone else on here has a service dog! My dog is also trained to apply pressure by laying down on me when I start getting jerks. If my arm is jerking, he lays on my arm, etc. blue - exercise is achieved through playing fetch, learning tricks, swimming in the pool, going for walks with my boyfriend, doing scent work, and all sorts of other things that I can do while sitting. Also, I'm not sure how Australias laws are worded, but here in the US, it's not the diagnosis that determines disability - it's how you are affected by it. ie: this is how our definition of disability is worded "Sec. 12102. Definition of disability As used in this chapter: (1) Disability The term "disability" means, with respect to an individual (A) a physical or mental impairment that substantially limits one or more major life activities of such individual; ( a record of such an impairment; or © being regarded as having such an impairment (as described in paragraph (3)). (2) Major Life Activities (A) In general For purposes of paragraph (1), major life activities include, but are not limited to, caring for oneself, performing manual tasks, seeing, hearing, eating, sleeping, walking, standing, lifting, bending, speaking, breathing, learning, reading, concentrating, thinking, communicating, and working. ( Major bodily functions For purposes of paragraph (1), a major life activity also includes the operation of a major bodily function, including but not limited to, functions of the immune system, normal cell growth, digestive, bowel, bladder, neurological, brain, respiratory, circulatory, endocrine, and reproductive functions." - Service Dog Central There's a little more to it, but that's it in a nutshell

You're not alone, Tee. One of the first times that I ever passed out was during sex. That was 2 years ago. These days, it's almost a regular occurrence. to be a little blunt, I've found that missionary is the best way to avoid it. Anything else basically guarantees a faint for me.

I'm lucky that I actually work for the organization that he came from. It's also one that give dogs to the client for free, so no I didn't have to pay for him. I have had him for a year, and have been having symptoms/ related health issue for almost 3. About as soon as I knew how bad I was getting, I got him and did all of his training on my own. Songcanary, thanks. He's my best friend and lifesaver =) Hope I didn't accidentally hijack the thread... perhaps we should start a new topic on it if anyone is interested in the subject. I know there were old posts about people looking into getting a service dog.

It's a matter of first deciding on whether or not you meet the ADA's definition of disabled. The dog needs to do things to mitigate your disability - ie: things you can't really do for yourself because of the condition. The tasks it performs must be directly related to your disability - if your dog is trained to open doors, but you are capable of opening them on your own, the task doesn't count. You can contact organizations that train service dogs and talk to them about what you need the dog to do. The downside is that many organizations have long waiting lists and a high dollar (though many of the older organizations don't charge clients for the dog). The other option is owner training. This requires finding a dog that is rock solid in temperament and health. It takes approximately 1-2 years to fully train a service dog. The best bet would be starting with an adult dog since you do not always know how a puppy will turn out. Your doctor does not have to prescribe one, it's a decision that you can make on your own. Although, talking with your doctor about whether or not it would be needed is always a good idea. Having a service dog can be difficult for those with POTS and other dysautonomias - keep in mind that the dog needs daily exercise, regardless of how much energy you have that day.

I have POTS and a service dog. First, I'd like to add in that it is very poor etiquette to have a dog that barks as an alert, that would be quite disruptive in many circumstances. She may have found a program that was willing to "trial and error" dogs with her, or the dog may be owner trained. Dogs can not be taught to alert (except in the case of diabetic alert). It is something that a dog either does or does not do and doesn't count as a task. In order to be legally considered a service dog, the dog must have trained tasks that mitigate the disability, and the person must be legally disabled as per the requirements of the ADA. For me, my dog alerts to fainting - he was taught to drop into a down seconds before a faint when we are out in public, and refuse to move. I have to instantly sit down next to him to avoid a faint. If I do faint, he tunnels under my legs (under the ankle if I'm face down, under the knee if I'm on my back) to raise my legs in the air and return blood flow more quickly. He also gets help around the house if I don't wake up quickly enough. Other things that he does for me: -pick up items on the ground since bending over will result in a faint. -alert to oncoming asthma attacks (which previously had me in the hospital almost weekly due to inhalers not working) -get my inhalers - I often can't get them quickly enough, and if I faint while having an attack, I'm in big trouble -provide mild balance support by helping me stand up, and counter balance if I'm dizzy I'd be curious as to what else her dog does for her. If you have any questions, I'd be more than happy to answer =)

I have talked with two doctors about it. One said "it's harmless, I wouldn't worry about it" and the other one told me that it's due to stress. This was 2 years ago and I haven't mentioned it to anyone since, so maybe I should. I normally get the paralysis episodes during the onset of sleep, but have gotten them in the middle of the night. It's absolutely terrifying each time and can keep me up for hours. I have found that I don't seem to get the episodes if the lights in my room are left on, but of course that just causes poor sleep and it's quite annoying.