bellaluna

I agree- you should probably mention it during your next visit. It is possible, if the food is moving through your system too quickly, that you are not getting the nutrients that your body needs from the foods (not to be gross, but basically, as the food sits in your intestines, the walls of your intestines absorb all the nutrients that your body needs from the food you eat. If the food is moving through those organs too quickly, there may not be enough time to absorb the necessary nutrients.) Hope that helps! Mary

My doc prescribed Lexapro for me at my last visit. Granted, it has only been a week, but I haven't noticed any difference, other than feeling even more tired all the time. I'm hoping that it's just an adjustment thing for me... thankfully I didn't get the side effects from this drug that I did when my old doc tried putting me on Cymbalta- that was horrible. I had to come off of it after 2 weeks because I just could not deal with the side effects it was giving me... Overall though, in the reading I've done, most people on Lexapro seem to be happy with it. Good luck with your decision! Mary

I'm sorry to hear you're having such a rough go... and that the doc you saw was such an idiot. Unfortunately, there are too many idiot docs out there and not enough good ones. You said that you were diagnosed in Milwaukee? Can I ask what doc you saw there and what your opinion of him/her was? Milwaukee is the closest to me that I've been able to find a specialist, so I'd be interested to hear your feelings on the doc you saw there. In the meantime, sending cyber HUGS your way! Mary

I'm sure you must be so relieved that it is not MS. As far as everything else, I can only offer big cyber HUGS to you. I hope that somebody will be able to help you with your questions. Mary

Thank you so much Morgan- I'm so glad you shared, because I feel, based on what you've said, that our experiences are similar. The Atenolol makes my fatigue worse too, but I'm willing to deal with it because it does help with the other issues. I think that because I didn't faint, that is why everyone is saying it is negative... as I said before, I do suspect that I may have a hyperadrenergic issue in my case. Would you mind sharing how they've treated your condition? Again, thank you. Thank you all- you've been so helpful. I don't know what I would do if I didn't have you people to turn to. HUGS!! Mary

Thank you so much- I feel a little better now. Actually, my first doc, upon my insistence did prescribe Atenolol, which has helped tremendously. I have not had a syncope or presyncope episode now for a few weeks, and the dizziness is better (I do still get hit out of the blue occasionally). The tachycardia or "funny" feeling heartbeats are a little better too. I am still struggling with the weakness and fatigue, and who knows, maybe an anti-depressant will help with that, I'll have to wait and see, I guess. Again, thank you. Looks like I will keep pressing on for that referral! Mary

Wow- lots more info here- thank you all again. Let's see if I can remember everything... I did have an event that may have triggered all this- I had 2 wisdom teeth surgically removed in July of last year. The operation did not go well (in fact to this day, I have not been allowed to speak to the doc that did the surgery- I think he's afraid I want to sue him), and I still have some residual numbness in my face. That doc also jammed my first vertebra during that procedure- I had to have months of physical therapy just to fix that. So, yeah, that could have kicked in something. My thyroid has been checked, and re-checked, and re-re-checked. So, I don't think that's the problem. I was on Gabapentin, stopped taking it the day before the tilt, since I didn't know I was going to have to go in for a TTT, so perhaps that skewed the results? During the tilt, I had nausea, sweating, felt really warm and flushed and just felt really ill in general. After the isuprel infusion I again felt nausea, warm, had the sweating, and my legs were trembling uncontrollably. Unfortunately for me, the tech that administered the test failed to document that, and so the docs aren't seeing that, until I tell them, and I think that it could be an important piece of information. I'm too young for menopause (31- will be 32 in April), so I don't think that is it. I also did wear a 24 hour Holter monitor, which, unfortunately for me, did not pick anything up because I did not have any episodes that day, and was not particularly symptomatic. I told them right away that they wouldn't get any info from that. I suggested wearing a monitor for a longer period of time, so we would have a better chance of actually getting something recorded, but that suggestion didn't get very far. That was with my old doc, and he was kind of a jerk. So again, thank you all so very much for sharing. I truly appreciate all of the info, it has been most helpful. Mary

Thanks everyone for sharing. My BP is not typically that high, but I was really nervous and anxious that morning, so I think that is why it was high. As far as my symptoms, it started back in September, I started having "episodes" where I would pass out or nearly pass out for no reason. After I'd had a few, I noticed that my heart was beating differently right before I'd have an episode. Then I started having dizzy spells, and extreme fatigue and weakness. And insomnia- it's funny because I've been more tired than I've ever been, but can't sleep. Headaches, shakiness, nausea, feeling cold but not being able to tolerate heat... I also have "flushing" episodes and those leave me feeling very bad... My symptoms are very "POTS-like" according to what I've read. I was thinking possibly hyperadrenergic form because I read that some of those patients have an increase in BP and HR during TTT. Plus the flushing episodes, etc. I don't know, maybe it isn't POTS. But POTS is the only thing that really fits... I'm just feeling so discouraged and full of self-doubt right now. I'm trying hard not to buy into what the docs have told me, especially since my newest doc freely admitted to knowing nothing about POTS. I'm just tired of trying to explain, you know? I know I shouldn't complain, because some of you have gone through WAY more than I, but it's hard not to be frustrated. Thanks again for all of the info and support. I'm glad I have this place to come and share my feelings- I truly think that you guys are the only ones who can identify. Mary

Ok, so I had another doc appointment on Tuesday, and I was hoping and praying for a referral to a POTS specialist (because the only docs in my area that deal with POTS require a referral). Instead, I walked out of her office with a prescription for an anti-depressant. So, yet another doctor thinks that I am just depressed and/ or making this all up. I feel like I am in the middle of a crowded room, screaming my lungs out and nobody can hear me. I'm so frustrated. So, I pointed out my TTT numbers and that I felt they were not normal. Nope, according to the doc, they are fine. I just can't believe that- here's what they were: resting before TTT: BP 144/84 HR 84 at 17 min into TTT: BP 174/110 HR 113 at 18 min into TTT: BP 157/98 HR 118 Then, after infusion of Isuprel 5 min after infusion: BP 158/100 HR 147 Now, maybe this isn't clearly POTS, but certainly it doesn't look normal to me! But I'm doubting myself now. I know y'all are not doctors and can't interpret my numbers, but if you could share yours, so I could compare... maybe even get a little sense of validation. I don't want to press on to another doc who will just tell me I'm crazy if it isn't going to get me anywhere. If this doesn't look like POTS or any other abnormality then I might as well just drop it and try to get on with my life. You know? I'm sorry if this post is kind of negative, I'm just kind of in a bad place right now... Mary

I'm sorry you're going through all of that... it sounds really rough. I can't really offer any words of wisdom, except for one thing. I'm sure holding that beautiful grandbaby of yours is so special, and not something you want to miss out on. When my kids were babies, I found that using one of those "boppy" cushions really helped. It is shaped like a C and you just put it around your waist (so it looks like an inner tube) and then you can use that to help support the baby's weight. I found it made a big difference. Hope that helps a little, and I hope that you can get some answers on the other issues soon too! Mary

Welcome! I too am a relative newbie, but the people here are wonderful, and have already answered a ton of my questions and have been really helpful. As the previous person said, not evcery single doctor that treats POTS or dysautonomia is listed, so do your homework on the physician that your Neuro is suggesting. He or she could very well be qualified. Otherwise, if you do feel strongly about seeing Dr. Grubb (I assume this is the Dr. G you refer to?), tell your Neuro about your feelings. As a side note, you would likely be able to get an appointment with the Dr. that your Neuro originally suggested sooner, because there's often quite a wait time for the docs listed (I know all of them around me have 3-6 month waiting lists). Good luck to you! Oh, and I love your screen name by the way! Mary

Nina- thanks so much for the link- when I looked at one of the websites that had the fancy "custom" bracelets, I thought to myself, "hmmm- I could probably do that myself"... and now thanks to you, I have the instructions! Thanks!!! mary

Excellent information, thank you all for sharing. I guess that there are some very good reasons to wear one, and I too think my family, my husband in particular, would be more at ease knowing that the info was readily available to emergency workers if something were to ever happen and I could not speak for myself. I may have to look into getting one... Mary

I have experienced problems with shopping also, which is really hard for me because prior to my POTS "decline" I LOVED to shop. Wild horses couldn't drag me away from a mall. But since last September, when I started becoming symptomatic, shopping has become one of those things that I do when I HAVE to. And always with my husband close-by in case of trouble. It really kind of makes me sad to think about it. It sounds like you are doing just about all you can to help yourself, other than telling your friends about your condition (which I can understand if you don't want to share). I can't really give any advice here since the only way I've found to cope is to avoid it whenever possible... Mary

I was reading through the links in the "help yourself to info" post and noticed there are links for medical ID tags/bracelets and such. I was wondering how many people here wear a medical alert ID, and if you do, what does it say (if you don't mind my asking)? I'm just curious, because it sounds great in theory, but I don't know how a medical ID tag would help a person with POTS... but maybe I'm wrong! Mary

Unfortunately for me, all of the POTS specialists within travelling (and they will still be 3-4 hours away) require a referral. So I wait. Your statement "I wont ever know if I can do it if I dont try... " is spot on to how I'm feeling right now. If I try and can't do it, then that is one thing, but if I never get a chance to even try... seems like we're in a catch 22- our employers want us to work, but can't or won't make accommodations to help us work, and so we can't work and SSDI denies that we can't work and so we cannot get disability benefits. Sheesh! What's a person to do??? Mary

Tisha- thanks for sharing your experience. Yes, my employer does offer long term disability, but they base it on the number of years that you've been with the company, and I've only been there for 2 1/2 years, so I don't know how long they will offer it to me. I guess if that is the route I have to go, then that is the route that I have to go, you know? I hadn't even considered that they might REQUIRE me to apply for SSDI, but I suppose it makes sense. I would feel so much better about all of this if I had an actual diagnosis, but as of right now I'm still waiting to get a referral to a specialist. I'm hoping and praying that when I see my new doc on the 12th, that she will give me one. In the meantime though, I'm kind of in limbo, and it wouldn't make any sense to apply for SSDI, since we don't even know for sure what exactly is wrong (well, I'm pretty sure, but my docs are still clueless). I'm sorry to hear that you're battling with social security. It is so strange and frustrating that some of us are able to be approved relatively quickly (though not many, from what I've seen), and the rest of us have to fight for it. That is what I'm afraid of in this whole thing. I'm already so tired of trying to explain to friends and family what is wrong with me, and why I look "normal" but can still be very ill. I hate feeling like I have to prove to people that I really am ill... Anyway, thank you again for sharing. Mary

Thanks for that info. Yes, they have more than 15 employees (it's a large insurance company). I am currently a claims assistant, and some of it is "desk based", an equal amount is being up on my feet and reaching for files and climbing to grab files and picking up and delivering items to the adjusters' desks. It can be pretty physical. There might be another job at the company that I could do, but I don't know. I don't know that I CAN'T do my job because I haven't been doing it since I became really ill. The reason I stopped working was that I was passing out and having bouts of extreme fatigue, weakness and dizziness. I'm willing to be creative and find solutions for the majority of my "requests" but I still worry about the potential for needing to leave work early because I don't feel well, or the need to come in later because it takes me so much longer to shower and dress now than it used to. Or if I'm "crashing" and may need time off... I don't really see them budging about that, though I could be wrong. Maybe I'm getting all worked up and worried about nothing, but I just can't shake the feeling that it is not going to go well. To put it in perspective, my company in the past has gotten rid of entire departments, with the sole purpose of hiring replacement workers for less pay to save the company money. What can I say? The insurance industry is not pretty... Again, thanks. I will have to verse myself on ADA stuff so I will be more prepared, and maybe that will help me feel better about all of this. Mary

Thank you so much tearose. Although I wish we were not in the same boat, I'm glad that I'm not the only one going through this type of thing all the same. Honestly, I do feel that my ability to work is limited, and maybe I should just consider applying for the SSDI, but at this point, I don't have a lot of support from physicians and I do not know if they would "back me up", if you know what I mean. I'm just praying for a referral to a POTS specialist nearby, and hopefully they'll be able to diagnose me and they will be able to vouch for me if I need to go the SSDI route. The part that is so maddening is that I have a couple of days per week that I feel relatively ok, and I think I could probably get out there and work. It's the other days I worry about, the days where I am so weak and fatigued that I cannot even get out of bed to shower... and some days I have to take it hour by hour because I can feel ok and then very suddenly feel very bad. I'm sure you know what I mean. It's the unpredictability that is frustrating. If I could tell my employer that I would "schedule" my bad days for Tuesdays, Thursdays and every third Monday I would, but this disorder just doesn't work that way... Again, thank you for your response. It is comforting to know that others are on my side and understand what I'm dealing with. Mary

I know I've been posting a lot of questions, but y'all have been so helpful, and I don't really know where to go with this one... I've been off work since November 2nd. Thankfully, my employer has been paying me short term disability during this time, but I feel like I should try to return to work. After all, I won't know what I can and can't tolerate until I try it, right? So, I contacted the nurse in HR and discussed my desire to come back, and what kind of accommodations I thought I might need (no standing for long periods, no reaching over my head, no ladders, short breaks to move around, temp controlled environment, and the big one- schedule flexibility for when I am not feeling good). She basically said that it would be up to the company's legal department and my supervisors to decide if the company can make the accommodations in order to help me return to work, and that if it places a burden on the company to do so, they can deny the request. If they deny the request, I will not be able to return to work, and I'm sure the short term disability payments will not last too much longer (thus them being SHORT TERM- I think they'd carry me through the end of March), and since I don't have a diagnosis yet, I don't really think I can appy for SSDI... I'm really upset about the posibility of not being able to go back to work, and even moreso at the fact that I don't know how I will support my family once the short term disability payments end, if my employer is unwilling to make the changes necessary to allow me to return to work. Can anyone offer any guidance on this subject? Mary

Thanks for the advice everyone. Flop- you suggested getting fitted by somebody that is trained to do so- how do I find someone? Are most medical professionals trained? Thanks again! Mary

I'm sorry to hear you're having a rough go... the thing that is so frustrating about things like POTS is that you never know if you are really fully better. It can come out of the blue and make you miserable at any time. Hopefully your new meds will help get you back to feeling better very soon. Sending hugs your way in the meantime! Mary

Oh my- look at all that hair!! What a cutie pie! Congrats to you and mom, dad and her big sis! Mary

Yeah, I prefer "fluffy" to "side of a bus"... tee hee Mary

Ok, the physical therapist that I've been seeing has suggested compression hose, but did not give me any specifics as to what level of compression. Do you just start at the lowest level and work up? I know that they are not the most comfortable, but not supposed to be painful, but I don't know if I should start in the middle somewhere. They're kind of pricey, so I don't want to spend a lot of money on hosiery that I won't wear because it is either not helpful because the compression is too low, or on the other end, is uncomfortable... I know I should ask my doc, but I just hate having to deal with him unless I absolutely have to. Thanks in advance for any info you can share! Mary