jem15

Thanks for the info! I'll pass it along. I know I keep telling her to make sure she mentions to her doctor her OH history, not just that she's dizzy. And I want her to eat more fat!! Funny that was mentioned. She's afraid of gaining weight and is always watching her fat but I feel like the baby might need more fat;-)

Hi, I'm posting on behalf of a friend. She had orthostatic hypotension in highschool and then it eventually went away. She's now 35 and about 8 weeks pregnant and her OH symptoms have come back. I've heard this could happen. Her main symptoms are dizziness and her vision blacking out when she stands or sometimes randomly after she's been standing for a little. I didnt know if she could do the whole increasing salt thing when pregnant, or ha, really anything that could help her when preganant. Anyone go thru this? Any ideas on what might work? Right now I just told her to change positions slowly and if she feels like she's exerting herself standing to take breaks, but of course that's hard to put into practice. She works as a school psychologist. Any suggestions would be helpful!

Hi, You guys may have seen this already, but I just saw it today. A new dys. group seems to have formed called Dysautonomia International. They're having a kickoff event in NYC at Lucky Strike on Oct 26th, tix are $40. I was just curious if anyone knows anything about this group and if anyone is planning on going to the event. Here's the Facebook link for more info..(if it doesn't work, let me know, I can try and paste the body of the text) https://www.facebook.com/events/498491563497388/

It seems to me from the research I've done and from my own personal experience that everyone's experience with different birth controls varies greatly. So what might be great for one can be awful for another. I too just recently had to decide to go back on, at least for a 3mo trial, despite how much I hate the possible side effects. I'd be on it for about 8 yrs due to irregular periods and worsening of my POTS symptoms before/during menstruation, Seasonique was the last one I had been on prior to stopping. I didn't seem to have any problems with it at the time, and it was better for me not to have a monthly period. I then went off for 3yrs, and my periods randomly became regular so I didnt think I needed to be on it anymore. Since I'm 33 now, I wanted to stay off since I"m getting older in "birth control years", but my POTS symptoms just kept getting worse not only before/during menstruation, but also during ovulation as well. In addition, I kept getting more ovarian type pain and cyclical sciatic pain, to the point where they are suspecting endometriosis as the cause. Since I dont want exploratory surgery, trialing birth control to see if it helps, seems to be the least invasive option. Since I was afraid of my risk factors for bad side effects, my doctor has me trialing the birth control while taking a baby aspirin daily, to reduce clot risk. I'm not loving having to take an additional med, but for now I went along with it. I 1st tried Lo Loestrin, it has the lowest dosage of estrogen out there right now, 10 mcg, in hopes of having the least chance of side effects.. but oddly enough I felt really crappy on it. Faint and hot all the time, and also had some of the normal symptoms like bleeding/spotting, headaches, and acne. And I was only on it 3 weeks. I know it can take 3mo to adjust, but I couldnt deal with the faint/heat feeling. So I stopped it for a week, and just started LoSeasonique instead, to try and determine if it was just that particular pill or my reaction to all pills at this point. Or it's possible it's not from the pill at all, since I didnt feel totally better off the pill, but maybe my neuro system just needed more time to re-set. So we'll see what happens, but I never had a bad reaction to the pill when starting it before, so I dont know if this is just how my body is responding now or what. I just heard of people using natural progesterone cream for things like endometriosis, but I'm not sure if it can help with period symptoms as well or if it can postpone your period like the pill. I'm trying to find out more about it, cause I'd love a less side effecty alternative. I was going to try the mini pill too, but my dr didnt think it'd help as well with endo. and she said i still might get my period on it.. she didnt think it'd work as well.. but if i cant tolerate reg pills, i may see if i can try it.. if i can get my insurance to cover it. Good luck trialing the pills. It's not fun.. but sometimes you can find one that works for you. I think it just depend on the individual person's body.

Yeah, like others have said, sometimes when something else is off/going on, I feel like that, like something is really wrong. Also, just being sick for 17yrs now and slowly getting worse from year to year, I wonder what will keep happening as I get older. I already cant tolerate many meds, and keep getting new symptoms or worsening of symptoms that dont go away. So yeah, when you say "How can new symptoms STILL be coming years later???" .. i hear ya... in fact just today i went to the ENT due to having the sensation that something is stuck in my throat on the one side, for like 6mo. and funny enough he thinks it's probably caused by autonomic dysfunction and one of the nerves acting up. Also, I have a reduced sense of smell for about a year now, and they attribute that to autonomic dysfunction as well. Seemingly small symptoms in comparison to everything else we feel, but it's just disturbing that these random new symptoms come up, and there's not much they can do. Today the doctor was talking about how post-viral neuropathy can cause these things when it affects the autonomic nerves, since they control so many things.. and this was before he even knew that I had post viral onset all those years ago. But it made me wonder, why if I got sick 17 yrs ago after a virus, would I still be getting symptoms now? does the damage just become progressive over time? So weird and frustrating to have these mystery conditions. And also so scary when symptoms just keep getting worse. The past 3 weeks my symptoms have been worse/weird, and I cant pinpoint what it is. I thought maybe the usual culprits.. i was getting sick... i've overpushed.. or that I started a new med.. but it seems these things should be ruled out by now and I'm still weird. I share your frustration, it's hard to hang in there sometimes when things just keep getting worse and we have no answers or help. hopefully with some extra rest and pacing, your symptoms can at least get back to baseline. Ha, that's my new goal now.. better pacing.. it's always a goal.. but in times like this when symptoms are high adn there's nothing i can do or figure out.. increased rest/pacing seems to be the only hope for getting things to calm down, though it's not working as well right now, but maybe that means i'm still doing too much. But I digress... hope you feel better soon, hang in there!

Naomi, Ha, yeah, I'm sure a Wiggle would have a very conditioned heart that's large enough to support all that Wiggling'-) Bren, Yeah, my case is somewhat similar it sounds. My heartrate increases for ex, arent that severe, and arent always consistent, sometimes they catch it, sometimes they don't. Yet despite the fact testing doesn't pick up things that are "severe", my symptoms are severe as they have grown worse each year and continue to limit my functioning, and I'm now to the point where I can't work or drive. My doctor said too that severity of symptoms doesn't always have to correlate to the clinical OI findings, and that for me it's just the resulting syndrome that's probably throwing me off. That, and maybe that I also probably have CFS.

I still struggle with this issue, though I do all the things you're "supposed" to do, writing stuff down, doing your own research, being your own advocate, being straight forward, though polite, in asking doctors what i need/want from them and if they can/can't help me with that... etc..etc...I basically "interview" doctors before choosing one to put on my "team".. and though I've at least found nicer ones now, who listen, and are willing to take my case, and at least fill out disability...in my 17yrs being sick I have still never met any who are really fighting for me, or really trying to help me, thinking outside the box, or do anything in between my appts with them. It's super frustrating, cause it's what we so desperately need and I have even given these desperate plea type speeches to them, and they can look at me with sad eyes, but still nothing.. and i've looked everywhere! I'm beginning to think it doesn't exist much in real life, at least not in my area, only on TV. Of course I still try, but right now it seems best I can get is just someone who's not derogatory and listens.. And some of the doctors have honestly even told me, I know as much as them, if not more. It's crazy.

Bren, In regards to what you posted, my understanding of all the terms is that there are several conditions that fall under the broad category of "dysautonomia" or "autonomic dysfunction". "Orthostatic intolerance" is a type of "autonomic dysfunction", where the body has trouble responding to/regulating itself in regards to upright posture, hence the "orthostatic" part. Orthostatic intolerance can result in a condition like "orthostatic hypotension" , where your blood pressure drops when you stand up, or it can result in syndromes like POTS where your blood pressure may stay normal when upright, but your heart rate goes up. So they're not exactly 3 different diagnoses, but kind of more specific ways of describing the autonomic dysfunction. At least that's how my Dr. explained it to me.. The kind of autonomic dysfunction I seem to have is orthostatic intolerance, but I don't have orthostatic hypotension, but rather the high heart rate and collection of symptoms associated with POTS, so that's a more specific way of referring to it I guess. Then there are some autonomic symptoms I have that aren't always typical of POTS, but just fall under the general umbrella of some type of autonomic dysfunction, cause it just means my neuro system is wacky and not functioning as it should. Ha, don't know if I explained that coherently at all, but that's how it was explained to me. As for just calling it a cardiovascular illness, ha, I don't know that that's correct, or you could at least say the jury is still out on that. Followers of the Levine protocol/theory might think so, but I personally don't think that's the case, at least not in my situation, it definitely seems neurological and more autonomic dysfunction related, than just a heart thing that can be fixed by addressing the heart and it's symptoms. For me, there's a lot of other autonomic symptoms like bladder/bowel issues, visual/vestibular issues, etc... My doctors, as well as other things I've read, have all said that it's the autonomic dysfunction causing the heart symptoms and not the other way around. My guess is that perhaps there might be different subsets of POTS/orthostatic intolerance patients... so maybe for a small group, addressing the heart fixes things, but for others, that's not the case.

Darn, I just tried DDVAP and couldn't tolerate it. I'm also sad about this cause for the short time I was on it, it seemed to be starting to help with the nightime peeing. I tried it for a week, and towards the end of the week, got extremely fatigued, where i felt like I couldn't even sit up. Then I stopped it for a week, to see if it was the med or not, and then went back on for two days.. the 1st day, intense fatigue came back, and the 2nd day I had a super bad vertigo episode that lasted for hours! I haaate that symptom cause not only is it incapitating during it, but then afterwards for days/sometimes weeks after, I'll have an increased sense of dizziness.. so I'm still not right yet. Anyway, my doc obviously said to stop the med. I've tried so many things and nothing works, so frustrating! I always get excited when a new article comes out on a treatment, but then so sad when it's something that didnt work for me and/or I couldnt tolerate:-( Ah well, good to know about anyway, thanks for posting. Only thing left for me to try is a combo of low dose mestinon/mido.. I've tried them individually with no success, but doctors tell me sometimes trying them together helps?? We'll see...

My symptoms are disabling to the point where I can't work or drive now. However, my doctor wouldn't say i have "Severe POTS" I don't think, he said I don't have autonomic failure or any of the known conditions that can make the condition progressive, etc.. yet my symptoms worsen on their own from year to year. My HR isn't always increased by 30beats, it's inconsistent, some days they catch it, some they day.. I can still have some symptoms lying down etc... so I dont have crazy high HRs, I don't pass out, just feel faint.. and my doctor agrees you can still have these symptoms in absence of the tachycardia.. and he knows I'm unalbe to work and am trying everything I can to get better, but knows my body has honestly not responded to anything. Not exercise, meds, etc... so he calls my case "treatment resistant" thus far. Anyway, don't know if that helps.. but yes, I don't think my POTS or neurological testing comes up "severe", but my symptoms greatly interfere with life to the point I have trouble with work and other normal daily activities.. so symptom wise, I think i'm more severly affected.

My situation was a little reverse to yours, but I'll share some stuff in case it helps. I qualified with my company's LTD plan, but then they also had me apply to SSDI (cause if SSDI pays you, they dont have to pay you as much). SSDI got denied a few times before going through. The LTD co. assigned me free lawyers to fight SSDI, ha, and it still got denied the first 2 times, and then was going to a hearing, and two days before, they called me to cancel saying it finally got approved. Anyway, the lawyers they gave me were part of a national group that does disability law called "The Advocator Group", you can look them up if you want. Advocator.com It may be worth looking into the lawyer thing again..They only took fees out of the retroactive benefits, and technically my LTD ate the cost of that, not me.. I don't know if it works differently for LTD co. vs SSDI.. but that was my experience. Also, I was told by the lawyer there, and also on another site "Chronicbabe.com", if you look up Jeff Rabin, I think his name was.. he was offering some people tips on there for free, again in reference to SSDI, but maybe he knows about LTD co too.. anyway, I wanted to bring in Dr. Raj's article, the Dinet POTS brochure, etc... and they told me it wouldn't help me and that the judge didnt want to see that.. Now, ha, I might still bring it if I were you, just to refer too, especially if you're fighting this yourself.. .but what they said was, it's not the name of the condition or research about the condition that they care about, it's how that condition specificially affects your functioning and ability to work full time in ANY job. They felt the doctors' letters specifically stating how your symptoms affect you, have the best chance of working. In my case, that's eventually what helped and the judge quoted their words in her decision. Having it said from multiple doctors helps too. Now, it seems like you have that information already, so I don't know if LTD co.'s are the same as SSDI sometimes in that they just try to deny you a couple times first? Or if they just stink... I've heard LTC co's can be really shady sometimes and that's why I was surprised I got thru 1st time with mine.. I don't think it could hurt to bring the articles, but really hit hard with your doctors' letters. And if they don't specifically state things with the wording you need, explain to them the severity of the situation and ask if they'd write a short note explaining how the symptoms aren't just disabling, but also specifically how.. like she can't tolerate sitting in a chair for extended periods, needs frequent breaks to lie down.. has trouble with sustained activity of any kind, etc.. Best of luck to you! Hang in there, I know it's a grueling and draining process, but fight like heck if you really need it. I have no other choice but to be on disability, no other way to support myself, no one to help me, so I had to get it.. and i'm still in constant fear that they'll just arbitrarily take it away, ha,but will deal with it then.. Anyway, just wanted to let you know I feel your pain, and it's worth fighting and putting in all the work. Even with lawyers, I was the one who did most of the work getting the dr's info , having them write the stuff correctly.. i even gave them notes reminding them of what needed to be included.... in the end i'm glad i did cause it was those letters that won the case... Whether you can get lawyers or not, hang in there being your own advocate!

thanks for posting both articles. so good to hear another dr reply to this and address some of our concerns. now i wish the autonomic specialists would do the same. And then interesting to hear Levine's reply.. I'm glad at least some discourse/exchange happened.. i just hope it continues and gets out to the media.. even with his explanation, though I'm glad he tried to clear some things up, i'm still not satisfied. I think whether or not he meant for it to happen, it's out in the media, people are being misled. Responsible thing for him to do would be to explain to the media outlets that it's just his theory based on his one study, and not true for all pots patients( in regards to the small heart/not autonomic dysfunction and exercise theory) But that's if he really believes that. It's not that I mind his theory/treatments being shared, it's the way the info is being presented, and how no other theories are being considered, while his seems to be presented as fact. I wish we could hear more from the patients his program doesn't work for, here and there a patient will post back to say once his exercise protocol didn't work, he had nothing else to say to them. But I'd be really curious to see how he'd respond to them in a public forum/comments or whatever... Everything just seems so one sided.. and it seems like he really doesn't see how this is hurting the POTS community.

Another thought,... anyone see any of the main "pots specialists"... Dr.Grubb, Dr. Raj, anyone at Mayo? or even Dr. Stewart..etc... I feel like if POTS ever gets press.. it's all "grinch syndrome" and exercise will cure you and it's a "heart condition"... where are the other doctors who know this is not the case, at least, not in all POTS patients? Can/will they somehow speak to this and at least offer another part of the story? Ha, any patients think they can get them to comment back to ABC news? It's so damaging when misleading press gets spread.. I know we're all happy for awareness.. but think of it.. who's going to want to do more press on this issue or give more funding to research for a seemingly "simple" condition that is cured with exercise? who's going to believe the POTS patients that are disabled or other info on POTS if they heard on ABC news, a seemingly credable source, imply otherwise. Did you guys read the comment that the women in the segments sister wrote? Leigh Poole? Very interesting.. I feel bad for the woman too, trying to do something good, and now even she's suffering from it.. sad:-(

I just read the article bout pots/astronauts/ small heart,etc.., and I agree with dizzyde that we should write in and tell them how they misrepresented pots a great deal. I'd give anything for a "cure" n if it was that easy n curative 4 everyone we'd all be doing it and our drs would all recommend it. I get so excited when I hear pots is in the press, then get completely disheartened when it sounds like everyone can be cured ndoesnt explain the myriad of autonomic symptoms. It seems 2 me, n maybe I'm wrong, but it's only Levine proporting the heart theory n that most drs consider it an autonomic disorder . So how the heck does his theory keep getting press and be viewed as fact. At least if they said it's one theory n helps some or a small subset of patients I'd feel better. It just scares n saddens me that all of us struggling do hard 2 get better, get set so far back with articles like this and I worry that we'll never get the increase in research we need if it's always implied its an easily curable condition that everyone gets better from if they're not lazy n just exercise. Ha ok sorry had2 vent, will post my reply to abc tomorrow but looks like most comments there feel similarly. Maybe if they get enough complaints they'll do something. Think I'll post dr raja research article too

Yes, thanks for sharing. I've always been so curious what exactly Mayo does with patients like us cause it's so impossible for me to get there, just dont have the physical or financial ability, but if they were miracle workers, and had some secret cures up their sleeves, I'd desperately try to find a way. It looks like I've had most of the testing that they did with you, and I've already tried all the basic POTS meds.. betablockers, midodrine, mestinon, florinef, and compression stockings, fluids, salt, etc.... and unfortunately nothing has provided any relief.. so I'm not sure that Mayo would have any other answers. It helps me to know though that they seem to be doing the basic stuff there, so it's not like they have a ton of special testing that I can't get done locally, or magical drugs or suggestions that I havent heard before. Ha, I was kind of hoping they would at first, they always seem to be talked about as a magical place where the hopeless can get help, and I'm sure, for many this is the case.. but at least in terms of POTS, from hearing your post and others I've read in the past, it doesnt seem worth the physical strain and huge financial risk. So thanks ,your post was helpful. Also, I'm considering trying the Levine Protocol, even though my one POTS dr was against it and thought it too extreme.. ha, which I agree, does sound the case, I really dont know how I'd handle it... but.... I"m just curious how symptomatic/disabled were you when you started his protocol? Were you unable to work/go to school? unable to drive? What was your functioning level like and how much did it improve by the end?

Don't know if everyone saw this yet... someone forwarded me the link today.... at least POTS is getting some press... overall good article ... I just didnt like 2 things.. how they didnt mention the teens that dont get better and/or get worse.. or adults with POTS. I think it's like 20% of us that don't get better? ha, why are we never mentioned.. they make it sound like everyone grows out of it.. ha, which always makes me sad cause I had postviral onset at 16, supposedly the "best" kind, and I"m now 32, and unable to work/drive and have never responded to any POTS med or treatment yet.. the 2nd thing was the doctor in the article mentioned something about how the mind needs to control the body or whatever.. and though i'm sure he just meant.. like when you start mild exercise, etc.. you're still going to feel symptomatic and have to push thru or that you dont have to lie down forever... i dont know if people will get that... i hope they dont think POTS people just need to push more and try harder.. ha, if anything, i think a lot of us overpush.. i'm the worst with it.. and it definitely doesnt help or make pots go away as we know.. Anyway, hopefully those things wont discourage people from researching POTS and wont make people think this is all in our control if we tried.. gosh how i wish it was, i'd be better by now! Anyway, hopefully we'll see more articles over the years.. and then more research, i'm still hoping for a cure or treatment i respond to in my lifetime! http://www.nytimes.com/2011/10/18/health/18brody.html?ref=health

Thanks everyone for your replies:-) And Lotusflower, thanks for asking bout the light therapy. But ugh, so frustrating, I haven't gotten to try it! I picked up the old machine and the doctor never checked to see if it worked. Looks like the bulb is burnt out, so I was trying to find a new one, but it takes a weird bulb. It's a "short" bulb, so not a full size bulb. And it's a 50watt/120volt.. I can find some 50 watt, but no "short" ones, and the regular ones won't fit in the machine. The doctor has no idea where to get the bulbs and wasn't trying to find one. Ha, I was so mad. He's just leaving it all up to me. I tried looking online but couldnt really find anything. Only on one site did I find an "oven" bulb that seemed to be the correct watt and size, but still wasnt sure since it said "oven".. and i'd have to pay extra money for shipping, and didnt know if it was worth it. The doctor then said he can order me a newer home version of the machine for $500 if I wanted. It went from free to $500! And he says he's been ordering this/using it with other patients. Which I didn't understand cause when I last talked to him, he said he hasnt done this therapy in a while, would need to brush up on it, and would experiment with me. So unless this sparked him to try again and start ordering it for several of his other patients, but I doubt it. Ha, so now I dont even know if he knows what he's talking about anymore. Anyway, right now, I have too much going on to drop $500. I still have the machine though, and if i can find that online site again with the weird bulb, i may consider getting them at some point, but i think it was gonna cost like $20-30 with shipping or something, and it might not even work. So I gotta see... I got frustrated, that he made me get a driver and go all the way down to get it without even checking it, and then is completely unhelpful in trying to locate a bulb for his own machine? I don't know... and now I dont know if i trust that he even did research on how to apply the therapy to my conditions.. and he's out of network, so i dont want him charging me for consults in between if he's not even doing much... so right now i put it on hold. When i get desperate for something to try again, I may try it... but right now, ha, I'm just keeping the machine, until i can figure out what i want to do... it's gonna be a pain for me to return it cause i'd have to find a driver to bring me there and it's like an hour away... so that's my disappointing story;-)

I do eat a lot of greek yogurt, never thought of adding salt to it, I'll give it a try, thanks

Thanks, forgot about soy sauce as a salty choice;-)

Ok, thanks! I never knew how many mg of sodium were in like a teaspoon,etc.. of table salt.. that's good to know that just a teaspoon a day works for you. I'll have to do more experimenting;-)

Hmm... maybe I will experiment with making my own or adding salt to other drinks and seeing if it's tolerable.. Songcanary, do you have a recipe that you tend to like best? I also still have to experiment with coconut water, i didnt like the one i tried, but i have another one with a little more sodium and fruit juice so maybe that'll taste better..Otherwise maybe I'll just drink Ensure and see if I notice a difference.. it seems to have more sodium than gatorade and has high potassium too, I could do without the extra fat, sugar, and chemicals if I'm using it on a regular basis.. but maybe I'll just try it to see if it even makes me feel better. If I find I do tolerate exercise better with the salt/electrolyte stuff, than I'll have to find a way to make it work. Ha, or I can try just try chicken broth to test the salt thing..if I can stomach it, or just eat a salty snack instead if it's too hard to get it in drink form. I just thought drink form would be easiest, quickest, and also might give me other electrolytes.. ha, but it's proving harder than I thought since I don't like all the other junk that comes with those drinks, and the salt content isn't as high as I thought with those drinks.

Thanks, I had never heard of either. They both seem to be sugar free though..I don't tolerate sugar free drinks/sugar substitutes well. I get nauseous, headaches, and a tickle in my throat.. anyone know if there are any flavorless ones, without sugar substitutes? or I rather almost take a sugar one, if sugar substitutes are my only alternative. I guess I could just try regular gatorade, but I didn't remember the sodium being that high, but I'm not sure..

Hi everyone, I'm going back to PT to try and come up with a good "POTS program", and though I haven't found salt to make much of a difference for me in the past, I want to see if it helps me tolerate exercise better if I take something super salty before and/or after exercise sessions. I never stumbled on a favorite drink of choice, I can't seem to get down V8s, and I' m fine with Gatorade, I just didnt want the extra sugar/chemicals if I could avoid it. I don't tolerate sugar substitutes well, so I rather take real sugar if I have to. Anyway, just curious what drinks, or light super salty snacks you guys tend to like or think would be good for pre or post exercising?

Hi guys, I read this article on a site called "butyoudontlooksick.com". It was written by a woman with lupus, and is about how it feels to live day to day with a chronic illness. Ha, I could relate, and thought you some of you might enjoy reading the article. I've always tried to explain my limited or negative supply of energy to people, and how if I do "too much" I get smacked down even worse. But maybe her visual analogy might help others understand things better. Here's the link if you're interested to read her story: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

thanks everyone, good to know!