jennyg97

I don't have much to add to this conversation that hasn't already been said, but I wanted to specifically thank Sandy for her comments, particularly the suggested phrasing for talking to doctors who disagree with a diagnosis. This seems like an exceedinigly reasonable approach and I can see how it would come off less defensive and conflictual than other approaches. Thanks for sharing your experience!

I think symptoms can change based on a variety of factors like medications, food intake, and the like, although I don't fully understand them. I normally faint, but lately have been having vomiting episodes rather than or just following fainting. In both cases, I normally break out into a cold sweat, get really dizzy/nauseous and it feels like everything around me turns to the consistency of mud; walking becomes exceedingly difficult (sometimes impossible) and I begin to move in slow motion, with every movement seeming to take more energy than I can muster.

I will be interested to hear how the gastric emptying study goes because I've read that POTS can cause a lot of gastric slow down. I've noticed my heart rates are higher and more volatile when things don't seem to be moving through my system at a quick enough pace.

I was on florinef for several years and was the most stable I've ever been. However, be aware that this medication can cause issues with your potassium levels. Your doctor should have your potassium tested within a short period after starting the medication to ensure that you are not losing too much. I had to be on prescription potassium supplementation as long as I took this medication (and was hospitalized once when they increased my florinef dosage without increasing my potassium supplementation).

The only reason I am not currently taking it is a bone density problem (associated with another medication) that got all the doctors too scared to allow me to take corticosteroids. I'm trying to build my bone density sufficiently that they will allow me to take this again, as I am now passing out almost daily and feeling miserable about 98% of the time.

I agree with what everyone else said about the humidity. It sounds like it may be the culprit in your daughter's case. For me, it's also a question of air movement. I might be freezing cold, but when the heavy air is still, it seems to be stifling. The easiest/cheapest way I deal with this is to have a fan that circulates the air. If that doesn't help sufficiently, you might try a dehumidifier.

Good luck!

Actually, thanks for raising another point of confusion. Is it sodium chloride (salt) that we need or just sodium? My understanding is that it's the sodium we need, but salt is the easiest way for us to get it. My salt tablets have only 180 mgs of sodium each.

My understanding is that 1000 mgs = 1 g, so 452 mgs of sodium chloride/salt is almost 1/2 a gram of salt.

Wow! This gives me a lot of hope. I had never heard of the possibility of recovery. I was first diagnosed 12 years ago and have had many ups and downs in my condition. Right now, I'm in a pretty severe down. But even in the "ups" I've never been off meds and no one's ever raised the possibility. What kind of drs are you seeing that are giving this kind of prognosis? Are they specialists in the field?

I had thought I'd been doing a pretty good job of salt loading - adding salt to everything, drinking salty drinks and the like. But in my recent downturn of the last few months, I started doing more research and learned that some of the newer research is recommending an intake of as much as 8 GRAMS of salt. I believe this is included in the Levine Protocol. Hard as I've tried, I don't think I've ever made it anywhere close, despite taking 5-6 salt tablets per meal, upon awakening and before bed.

So I was just curious how much we're talking about when people say they are eating a lot of salt. And how you're boosting your intake. And if you see greater results at the higher levels.

Thanks in advance for any input.

Although I haven't been on two of the three medications you list here, I did want to jump in and suggest you talk to your doctor about adding one medication at a time. That way you will be able to tell which medication is actually helping (assuming one of them does).

I have not been on mestinon, so I hope others will jump in here with their experiences. I've also not been on toprol, but I've been on atenolol, another beta blocker, for years. It's helped keep the high heart rates down and I haven't gained any weight on it, so maybe toprol is the same.

As for florinef, I loved it. I was most stable on it and I didn't really notice any side effects. However, I ended up with a broken pelvis due to osteopenia and my doctors became uncomfortable with me being on it anymore, even though it is unlikely to have contributed substantially to the osteopenia.

Anyway, good luck in your search for an effective treatment plan.

Jenny

I'm sorry he's having such a tough time. I first got sick when I was in high school and missed 65 days of school each in my junior and senior years.

For me, getting up earlier actually helps me. It gives my body more time to adjust to being awake before I am taxing it by heading out the door. I try to get up around 4:30 so I can be at work by 8. Of course, in the worst times, this doesn't always happen. But I find that I do better with that early morning adjustment period. I hope it works for your son too.

Heather,

Thanks for your input on Mayo and on Rochester. I'm sure I'll have more questions as it gets closer. I'll be in touch. And hopefully I'll hear from some of the people who have been through the POTS clinic too.

Thanks again!

Jenny

This is such a hard call - agonizing really. I feel your pain. It's tough because the less you do, the less you are able to do. But at the same time, if you push too much, then you are also able to do less.

Are there any other options like part time work or telecommuting? Maybe going into the office for a few hours a couple of days a week, with some flexibility on which days? This kind of flexibility can make a huge difference and help you maintain some sense of normalcy and positivity. For me, I get a lot of my satisfaction out of work, so when I can't do it, or can't do it well, it becomes harder to stay positive. Plus, starting with a more flexible schedule allows your body to gradually adjust to working again after a hiatus, rather than taking it from full rest mode to full work mode - an almost guaranteed relapse waiting to happen.

All that said, only you know your body and how far it can be pushed. Only you know how stable you are on a day to day, hour to hour, minute to minute basis. Only you know the flexibility you have at work. And you have to be cognizant of all those factors.

For myself, I had to go on short term disability several years ago. It was an agonizing decision, and hard on me physically, emotionally, and financially. But ultimately, it was the step I had to take to allow my body sufficient time to begin to heal from the trauma it had gone through and was going through. Once my short term disability was over (3 or 4 months, I believe), I started working part-time to gradually rebuild my strength until I could work a full schedule again. The rebuilding phase was all worked out with Human Resources before I left the office, so all sides were on the same page from the outset.

After my short break, I was able to return to full time work and eventually pick up with a full schedule of 50-60 hours a week and including international travel.

I'm totally with you on hating to go to the dr. I have a list as long as my arm of tests I am supposed to do on a regular basis - things we are "watching." And I just don't even want to know at this point. If I can't see them, they can't see me, right?

Although I don't have an answer to your low blood sugar question, it's a topic that interests me and I appreciate your posting the topic. In one of my recent fainting spells, paramedics said my blood sugar was a little low - 62. This was not a fasting blood sugar. I wasn't sure what it meant and aside from forcing me to drink some apple juice and recommending I go home and eat, no one else had any suggestions either. (Well, they wanted to take me to the hospital, but I had recovered enough to fight that.)

I hope you feel better soon and that your surgery goes well, without any complications.

thanks, Jana. I just got the call on Friday that my appointment is set for November. I am nervous and excited all at once. I've kind of always held Mayo out there as my last hope - something to hold onto for the future. But now I'm scared that I will go and they won't be able to help me. And then my last hope will be gone. I'm trying to think positively, of course, but I landed in the hospital again on Friday. And that always gets me a little down.

I wish I'd known Scottsdale was an option, as I have family in Arizona, but no one in Minnesota. I just thought I needed to go to MN because that's where I'd heard there was a POTS clinic. After I'd already gotten the ball rolling, I searched this site and realized that maybe I could have done Scottsdale after all.

As far as Mayo is concerned, I have a lot of questions. I am awaiting the packet of info in the mail, but in the meantime I was wondering if it is recommended that someone go with you or can you go alone? And how miserable is it? I'm guessing that you don't feel well if they are testing you so as to induce attacks. Do you have to go off medication you are currently taking? Do they have EP specialists there to deal with pacemaker settings? Was insurance a nightmare or does it seem like mostly everything is covered? How did you work with insurance?

Yes, a million questions.

Thanks again!

Jenny

Thanks! I may try the half midodrine tomorrow. Have to wait until Tuesday for the norpace to come in. But I can't sit around doing nothing. I feel like my life and my capabilities are slowly slipping away a little bit every day. I don't think I can handle another weekend like this one. And I can't handle another ambulance ride. Or another hour of distressed breathing. Or the nausea. Or the fatigue. Or any of it. Can't I please just take a vacation?

Thanks for the responses. I must be super sensitive, because the dose I am on is only 2.5 mgs. I had another really bad episode last night that landed me in the hospital (again) so I may try the midodrine again tomorrow. I am also awaiting a prescription for norpace. Has anyone tried that before? I used it after I was first diagnosed about 12 or so years ago, before my pacemaker was implanted, and it worked well until it lost its effectiveness. So it's probably worth another shot, right?

Thank you for all your suggestions. I haven't yet decided where to go from here (aside from Mayo MN)- I'm just trying to find a day in my schedule when I can handle another migraine without losing time at work. Maybe the hurricane will give me a good opportunity

It has certainly been an adventurous week though. First, the earthquake, followed immediately by a syncopal episode due to the interruption of pacemaker functioning as a result of the earthquake tremors. And now the hurricane. Fortunately, I'm far enough inland, it will hopefully only cause widespread power outages and flooding, rather than actual damage. But I guess I might be housebound for a couple of days.

And good luck to all of you who are actually in the path of the hurricane. I'm hoping for the best for all of you!

I already feel old and have since I was 16 - 20 years ago. Being on medications normally seen in old people (like blood thinners), and having a pacemaker, and being the youngest in my dr's offices by several decades, I feel like I have old systems hiding in a young-looking body

That said, I think the poll results might be a little skewed due to the technology we are using to communicate. That is, I would venture to guess that people in their 30s and 40s are more likely to use online forums for support, whereas people in the younger demographics might be more likely to use newer technologies such as facebook and older demographics might be less up on technology as a whole and may not even consider reaching out through the computer. I'm not sure if this is the case in actuality - it's just a thought.

Tuesday, thanks for your response. I took the midodrine twice yesterday. Within an hour of the first dose, I had a headache. Five or six hours later, I took the second dose and the headache turned into a migraine. Normally I only get those when I get dehydrated (ie don't drink a 16 ounce bottle of water every hour and a half) or my blood pressure is too low. The headache stayed with me until I slept, but when I awoke this morning, it was gone. Interestingly enough, my blood pressure did not rise while I was on the midodrine. in fact, it was lower than it had been for the entire previous week. It was running 95/60 all day.

Today I feel not great - lots of dizziness and headrush when I change positions and pre-syncopal symptoms that make me so tired. Does it make sense to try the midodrine again? Or is a one day test enough to demonstrate if it will actually help? Since it's so fast acting and gets out of your system so quickly, it kind of seems like one day would be enough. Has anyone had a different experience?

Thanks in advance!

How long does it take for midodrine to start working? And do you have to get used to it? Or will you know pretty quickly if it helps? I had a negative (but not terrible) experience with midodrine about eight years ago when I was going through a tough flare of POTS/NMH, but the dr. has re-prescribed it for me in this current bad flare. I haven't taken it because I've been scared, but I'm doing very poorly and feel like I have to try everything. Especially since I am going to Mayo this winter sometime (am on the wait list). I want to be able to say I've tried everything. Thoughts? Also, for anyone who's done Mayo MN, I'd love to hear more about what to expect. I'm nervous and hopeful all at once.

I can relate. I'm a runner, or at least, I like to run. Some days, I can run 3 or 4 miles with no problems. Other days, I can't run more than 49 seconds (yes, that was my shortest recorded run ). And stairs are killer for me virtually every time. I think there must be something different about the stairs that make them tough even for POTSies who still have been lucky enough to maintain good muscle tone. It's hard to explain to people how I could run 4 miles in the morning and then have to take an elevator up one flight.

Unfortunately, I don't have any great insight on how to talk to your doctor about it, but at least you know you're not alone, right?

I never envy the parents of children who are ill. Being a caregiver and watching someone you love suffer can be so overwhelmingly difficult. And trying to manage their care - protecting them, while allowing them the independence they crave and even need - is a gargantuan task. My hat is off to you.

And my thoughts and prayers are with your son as he attends school.

Okay, so I brought this up with the geneticist that I saw today. He didn't say much about it, other than maybe, at some point, I should see a hematologist. I'm scheduled to see my ep-cardio in a week, so I guess I'll try eating more leafy green veggies like you said, Jennyg97, until I can get in to see him. I really want to avoid my primary at the moment because he seems to do more harm than good. I live in a small town so there aren't many family doctors I can go to. I've been to all of them before at one point or another and my current one is the only one who has listened or tried to help at all. I think once he sees some of my test results from the geneticist and once I go to Mayo, he will quit thinking it's all in my head and take me more serious, but I don't know. Thanks so much for your replies!!

Did the geneticist at least run any labs? This is really probably something you shouldn't put off too long for a couple of reasons. First, if you are not making enough platelets, this could be a serious issue that could become life threatening quickly. Second, if you are spontaneously bleeding, you are more prone to bleeding complications that can be life threatening. Sometimes the bleeding is internal and you don't notice it immediately. (I'm on coumadin and have had several serious GI bleeds, so I have some experience in this realm. Nonetheless, I'm not a dr. so take what I say with a grain of salt.) Third, you are more prone to injury. If you were to pass out and hit your head, for example, this could potentially become serious more quickly than in other circumstances. While I'm not trying to alarm you, I do want to make sure you understand the possible risks.

Good luck!

Being new to the site, I don't know Kayleigh and her situation so everything I say should be put into her particular context. With that caveat in place, I have to say that there is something to be said for maintaining normalcy as far as possible and filling your POTS-inhibited life with wonderful, fun experiences. I was 16 when I first got sick - now almost 20 years ago. Like everyone else here, I've had a lot of ups and downs, a number of near-death experiences, and a lot of public humiliation. But, what has made all of that bearable is the level of normalcy I've been able to maintain (despite my multiple serious health complications). Travel has been a huge part of my life, primarily because I live far away from my family, but also for various jobs. Yes, it wears me out, and sometimes I crash. There is typically an aftermath. But let's be honest, there's an aftermath to sitting through a full day of work. And often an aftermath to just getting out of bed. Personally, I prefer an aftermath that is preceded by an experience I love and will cherish.

I weigh all of the risks and potential aftermath scenarios in advance - I know the risks. But having a few days to be surrounded by my nieces and nephews, my siblings, and other family, does a lot to sustain me through the hard times and helps me pull out of the aftermath a little quicker (sometimes).

When I travel, I make sure I take it very easy the day before, go to bed early, sodium load, eat properly. I always carry a large bottle of water and a bottle of gatorade with me (I drink up just before going through security and purchase new ones as soon as I am through). If it will be too much for me to deal with a carry on, then I check my bag and make sure my small carry on is light enough (or on wheels) so I will be able to handle it even if I'm having a bad day. If I feel bad at the airport, I ask for a wheelchair (although, in all my hundreds of trips, this has actually only happened once and even then I tried to turn it down - I'm a little willful ) On my layovers, I always walk around a bit to get the blood flowing again, eat a healthy meal, and drink a lot.

Kayleigh has the added bonus that she will be traveling with others. If they are people who are familiar with her and with her condition, then this might be an almost ideal situation. When I travel, I travel alone probably 99% of the time. this can be frightening and I am more apt to question the wisdom of taking a particular trip for that reason. But I'm learning that fear is even more deadly than the illness, and it can trigger the illness. So again, I weigh the risks vs. the benefits and try to make an informed decision on a trip by trip basis.

Ultimately, the decision has to be made internally - with input from Kayleigh, Kayleigh's doctors, and you. I wish you and Kayleigh the best as you make this decision.

PS One other factor to consider is destination. Colorado is higher altitude than NC, so there will probably be some effects. I am traveling to Utah the same weekend and have the same issues. As long as she is aware of this and knows what to expect, it shouldn't necessarily be prohibitive, but it should be included in the risk/benefit calculations for sure.

Call your doctor. I know that's the last thing you want to do, but if you've got that much spontaneous bleeding going on, you definitely need to get checked out. It could be a side effect of one of your meds or it could be something else. But either way, you need to get checked out. Your dr. should, at the very least, run a few blood tests to check your platelet levels, red blood cells, clotting factors, PT/INR, etc. In the meantime, it might help to eat more green leafy vegetables (only a temporary possible solution), as they have vitamin k which can help with your clotting. Avoid eating a lot of foods with vitamin E (such as garlic) until you get this worked out. Also avoid over the counter anti-inflammatories such as aspirin, ibuprofen and the like.

But ultimately, call the dr. right away.

Good luck.

I am new to the forum but am looking forward to learning from your experiences. I was dxed with POTS with neurally-mediated hypotension nearly 15 years ago. I had a pacemaker implanted, which has helped a lot and brought me several periods of relative stability, but recently I have taken a huge and inexplicable nosedive. I have episodes nearly every day, although I am normally able to abort them and prevent full out fainting most of the time, so I only faint about once every week or two. However, I'm really struggling with the post-episode fatigue which lays me flat and makes me feel as though it's impossible even to hold my head up. Unfortunately, the severity of the fatigue is actually greater when I don't go into a full faint. Has anyone found anything that helps recover more quickly? Assuming, of course, that this is common...

I'm on atenolol, taking as much salt in as possible through tablets and table salt, and exercising whenever possible (which feels good at the moment but causes extreme fatigue and chills 2-3 hours later). (On a side note, I was running/walking 8 miles a day when I started the backslide.) I am not able to tolerate florinef at this time due to bone density problems.

Any suggestions or ideas greatly appreciated.

Jenny

PS Also, any thoughts on Mayo Clinic?