Frugalmama

I, too have this constantly, and have noticed my limbs falling asleep much more quickly since I started taking midodrine.

My HR typically only jumps about 40 bpm on standing, and my blood pressure goes up slightly. At my last TTT, my cardio did mention that it doesn't seem that severity of symptoms correlates with degree of HR jump, at least in her experience. She said that's one of the reasons this is so hard to treat...

Does there seem to be any correlation between amount of exercise tolerated and whether folks have PD or hyper POTS? Just curious...

I don't know about helping with BP and such, but I have a wonderful massage therapist who works wonders on my neck and shoulders! I have constant aches and tightness there, and after a massage I literally feel lighter . She thinks it's because massage encourages oxygen flow to the massaged area, so it's pulling oxygen back up towards my head. Plus anytime I get to lie down when I'm out, it's a definite plus!

I didn't do well on Propranolol - it did lower my resting HR by 15 bpm or so, but I just started becoming severely symptomatic at a lower HR threshold. And it made me feel like my heart was trying to race, but was bring held back...very strange!

I finally have my appointment booked with a specialist in another province, and the list of tests they are doing includes a couple I've never heard of! If anyone has an idea of how they're done and what they're for, I'd love to know! This is what's on the booking slip (plus TTT, etc) Beta adrenergic Alpha adrenergic (includes I.H.R.) Intrinsic heart rate Thanks!

Isn't it frustrating when the tests don't pick up on what actually happens? I had no symptoms at my first TTT, which was crazy since at that point I had them about 85% of the time when standing. I realized it was because I was freezing...my feet were blocks of ice, and I had goosebumps all over. Usually if I'm cold to that extent I remain less symptomatic for a longer period. So for the second TTT, I made sure to stay at a normal temp, and they were able to capture symptoms. I'm sorry it worked out that way for you -can the doctor do a poor man's test in office to get a more realistic view of what happens?

I'm not a help in the "why", but I have had the same issue for 10+ years, and was diagnosed with Chronic Fatigue Syndrome many years ago (and before the POTS diagnosis). If left to wake up on my own (I have 3 kids under 5, so it happens rarely!), I can easily sleep 11-12 hours. In addition, I have at least one 2.5-3 hour nap each day, and usually a shorter 45-60 minute one as well. The naps are never taken out of leisure, but absolute necessity. I'm interested to hear what others experience, too!

I have had health issues for as long as I can remember, and had such severe IBS in high school/university that I could barely eat anything ( I'm 5'9" and couldn't get above 120 pounds) and had to finish my degree by distance ed. We then figured the crushing fatigue and extreme exercise intolerance was chronic fatigue syndrome. I started noticing acute POTS symptoms in April 2008, and finally got a diagnosis of OI around a year later, and I was finally diagnosed with POTS in January 2011. Now that I look back, though, I've been having the HR spikes (in addition to the other symptoms) for more than 10 years - I just pushed through and finally noticed when I did because my first child was walking and I couldn't take care of her when she took off. So...it took almost three years from when I actually noticed, and from that point my symptoms have become much worse.

I don't have anything to offer in the way of help with meds, but I can definitely sympathize, Jared! I'm only on Midodrinem but it has had absolutely no impact on my symptoms. i am so sorry that you are going through all of this - but through it all, try to keep your eyes fixed on Jesus. I am sick all the time, too, and it is extremely difficult to be that way in front of my kids. My one year old has spent far more time with our full-time caregiver than with me..BUT I know that he and the bigger kids are being loved well, and I can do better for them by taking the best care of myself that I can. You have help with your kids, right? Can you take a few days and do nothing but rest? I will pray that your docs can come up with a magic cocktail that makes life more bearable for you

I'm on the verge of housebound. I do sporadic work from home for a crafting business I started, but there's no way I could do anything with regularity or for more than an hour at a time. I have three kids under five that are home with me, and we have full-time help so I'm never home alone with them...thankfully I don't pass out, but the acute episodes I have render me unable to get up from lying down. I get to church every week, and usually out for a brief time one other day during the week, but only because my husband drives me and babysits me while we're out . We can't go to movies, eat out, etc., and I am limited to about 45 minutes of coherent time while sitting and trying to visit. It's frustrating for sure, but I am so thankful to be blessed to have my kids home with me during the day...I can hug them like crazy, even though I spend most of the day lying down!

Hi folks! I applied back in March for CPP (disability), and finally got a call three weeks ago from a very rude woman who is my medical adjudicator...lucky me! . she informed me she was a cardio nurse before, and although she had never heard of POTS, she looked it up on the internet. She needed some additional info from my doctors about prognosis and such (which should be interesting since he'd never heard of POTS before me), and also said that she feels I could work a desk job. She might as well have recommended me to become an astronaut with how far-fetched since I'm currently almost house bound. Anyways, I have a chance to add some info to my application to update it, but I'm at a bit of a loss as to how to better describe how debilitating my symptoms are. Any suggestions? I will also be including a number of journal articles with more info on POTS, since we all know that the wikipedia entry hardly covers all the facets of this illness . Thanks so much!!

I definitely experience these swings, and it gets worse the closer I get to blacking out. I am also extremely joyful and mild-mannered, but as my hr spikes and all the other symptoms come rushing in, it's like someone else takes over my body. I don't like being short with people, and it gets to the point where I literally cannot even smile. I do notice, too, that it also happens in direct correlation to how bad my mental fog is as the acute symptoms pile up....i.e. If I can't add two single digit numbers together, it's pretty likely that I'm really, really snippy too . I really do feel that it's part of the oxygen deprivation, because I feel markedly better in this area within a few minutes of getting horizontal. It's like your body needs to use every resource to stay vertical, and so all of the non-mandatory things go out the window,,,

I had the test done, and it came back negative. It is my understanding, though, that the autoimmune tests don't always show positives when they should.

I'm just like enko and Mack's Mom. The first time I went to the cardio, they took my bp and it was about 120/75. They looked at me like I was nuts when I asked them if they were sure the machine was right, because my bp was always 90/60 (except for the occasional 100/60). But recently I've started taking my bp when having a symptom flare up, and it actually swings up...so I'll add that to the symptom list!

For those that have seen improvement, do you have PD or hyper POTS? And any idea if this is as effective for those that have CFS? ( I know there's a lot of debate about overlap between the two, but even before I had POTS I had years of being almost housebound after exercise/activity )

Hi folks! My docs don't know a lot about POTS (I was diagnosed - finally! - in January), but over the past month or so I've been trying Midodrine. I started at 5mg 3x a day, and am now up to 10mg doses. I haven't noticed any reduction in symptoms, although my blood pressure has been getting up to 120/80 (normally 90/60), and have seen it as high as 145/90. I've also been getting more severe headaches. I was told by a pharmacist that the max dose per day is 30mg, and any higher than that is only used if some improvement is seen at lower doses. Anyone have any experience with no symptom reduction on Midodrine at these levels? I'm not sure what to recommend to my GP, as I'm his first patient with this diagnosis.

I've definitely run into that attitude, too. I had an ER doc glance at my file and ask why I thought I had POTS. When I responded that I had all of the symptoms and a diagnosis had been made, he simply said, " It's really rare. i don't think you have that"....and he turned around and left. My hubby and I were so shocked that we burst out laughing as soon as he left the room. Apparently if something is rare, no one can have it....?

I've also had an event recorder, but like the holter, they come back "normal" because they didn't see any abnormal rhythyms that they could fix . When my GP looked at my holter results, though, and saw that my 48 hour heart rate average was 99, he said, " I don't know exactly what normal is supposed to be, but that's definitely not it!".

I had weekly IVs for the last two months of my pregnancy last year. My symptoms were getting worse, and with no meds to try, we were desperate to try anything! . I didn't see a dramatic decrease in all of my symptoms, but the fatigue and brainfog definitely lifted a little for the day or two following the IV. I also requested an IV the day after I delivered my son (I did not have one during labour), and found that it sure helped me to recover more quickly from labour.

Not very much . Today I was up just after 11:30 and sat wedged into my comfy chair for about an hour and a bit, then had to lay down on the couch. I was able to sit up for about a half hour or so in the afternoon, and then had a 2.5 hour nap. This evening I sat at a Bible study at a friend's house for an hour and a half, but my hubby had to drive me and pick me up since I couldn't make it home myself last week . I can stand long enough to make myself a bowl of cereal, or to go to the bathroom or sometimes to quickly sweep the kitchen floor, but that's about it. Even then I start having symptoms, but I can usually get back to sitting/lying before I'm on the verge of blacking out.

Hi folks! I've been ill for a long time, but have definitely had POTS for over three years. I was officially diagnosed in January, and just last week finished breastfeeding our third child, so am on POTS related meds for the first time. My cardio prescribed 2.5mg of Midodrine, three doses daily. Today is the fourth full day I've taken it, and although I haven't noticed any reduction in POTS symptoms, I have noticed that I am exhausted and extremely nauseated. I'm not sure if it's related, but I think I may have hyper POTS. Mine has been a gradual decline, and my mom and sister have similar (albeit milder) symptoms, plus although my BP is typically low (90/60 or so), even during the TTT I didn't see any drop in BP (and it also never drops during symptoms). So last night I was having crazy symptoms and I managed to grab my BP and on a number of consecutive readings was around 115/80....I have never seen it that high before! Even right now (6 hours after my last dose of Midodrine, and have been sitting on the couch for hours) my BPis 120/76. So... 1. Is it normal for Midodrine to boost BP that much, even that many hours after taking it? 2. Is therer anyone here with hyper POTS for whom Midodrine doesn't work? 3. Does Midodrine normally cause nausea and extreme fatigue, or could this just be residual symptoms from raising my BP? 4. If MCAD has a part in this (which I'm very confident it does but we're waiting on testing), would treating thosr symptoms alleviate some of the other symptoms I'm experiencing? Any help would be greatly appreciated! None of the doctors around here know anything about this, so I keep bring them study after study trying to sort out what to do . Thanks all - the information I find here has been invaluable! P.S. So right after I posted this, I got up to turn off the lights and head to bed. I started to feel extra crappy, and took my BP again...and ended up with readings averaging 140/85! Eek!

I'm really sorry that things have turned out this way! But Ido think your friends are right...this illness is not for the faint of heart, and if he can't handle it, your relationship would have been extremely strained all of the time. I know it's really hard at the end of a relationship, but try to think positively and remember that there is some fabulous guy out therr who is patient and kind and will support you 100%. You have enough going on physically without having to deal with drama, too, and you deserve you have someone take great care of you!

...were you able to get a methylhistamine urine test done? My GP has never heard of it, so he's going to check to see if it's available in Manitoba. Thanks!

Brain fog is one of my most frustrating symptoms! I routinely forget my phone number, and lose track of conversations very quickly. I also find that I get "lost" in stores very easily - I'll completely forget what I'm looking for, or I'll need to decide between smooth and crunchy peanut butter and for the life of me won't be able to remember which my husband prefers. One of the reasons we got a cell phone is so that my husband can call if I've been in a store too long...he'll call and say, "Are you wandering? What are you looking for? Come home!". He also jokes he's going to put a lanyard on me that says, "if lost, please call #######". We're trying to find the humour in it, but it is so challenging! I was an excellent student, planning to head to med school, and I can barely memorize phone numbers anymore! And I lose things all the time! I actually have a keychain that goes around my wrist so I can't leave my keys (again) on a store shelf somewhere . This symptom is actually a bit scary, too, as I have three kids under five. I can't be on my own with them for long, since the brain fog gets so bad that I can't function properly.