heathmcev

I am having an horrible time! My main POTS dr (autonomic neuro) called and yelled at me on the phone Friday! I have basically been in tears since. I had left a message with his assistant, letting him know that my cardio wants to switch up the meds, and to call me if he has a problem with any of it. He and this cardio had agreed to work together in my treatment, as both have been treating POTS for 20-some years (sounds ideal, right?). So he calls me and says angrily that he "doesn't have time to argue with another doctor". They've never even spoken!! Nor did I ask anyone to "argue" - I was trying to do my due diligence and make sure everyone was on board with the change. I didn't want to upset the apple cart... well the apples are rolling around in the street now! He said he also got denial from my insurance to have the insulin response test done that he wants me to have. Shouldn't a Dr know that (1) that's sort of par for the course w/ insurance, and (2) that it's NOT the patient's fault???? Plus, I went out of my way to do as much leg-work for him as possible in trying to get the test approved so as no to waste his time. To the point where the insurance company actually said to me that I had to let the Dr's office do the rest. GRRRRRR!!!! So did all this require yelling?? Sort of ironic when he's the one who's been lecturing me on not getting stressed out since it worsens symptoms. Now he's causing the stress. I have been vacillating between anxious energy and bawling all weekend. I'm trying to get angry but it's hard. I can't imagine why he needed to take things out on me. I actually broke down and cried while on the phone with him, which I've never done w/ a Dr before. But then I've never been treated this way! And the worst part is that he's the one who I've felt best about through this whole thing. He's the major POTS Dr in the area and up until this moment I felt like we'd been getting along well and that he's really been helping. It's clear, though, that even though he said he is willing to work with my POTS EP, he really wants to run the show himself. But he's not a cardio, just as the cardio's not a neuro! Forget what's best for the patient. In fact, as proof of the point, he had me go through a horrible withdrawal from Cymbalta just to prove whether or not the cymbalta was exacerbating my palps... and after a month of withdrawal symptoms, the tachycardia and palps were the same as ever. The cardio told me later that he could have said straight off that the cymbalta wasn't effecting the palps. I never even told the neuro this because I didn't want to seem to be second-guessing his expertise. Now I have seen first hand that it's good I didn't tell him this... God forbid his wisdom be questioned! so now I'm wondering what the heck to do. Part of me thinks I should suck it up and keep going to him, but the rest of me wants to try another POTS guy in a neighboring state (Dr Goodkin - I think he's in Media, PA? If any of you like him and think I should give him a try, please pm me!). I feel like the rug's been pulled out from under me. *sigh* dizzyde

Thanks so much for all of this great info everyone! I'm starting florinef tomorrow - and so glad I looked here first! Yesterday my EP told me not to bother any longer with salt tabs and to just take the florinef - starting at .2mg. I asked him twice if that was ok given my very sensitive body and he nodded. GRR!!!! So I'm going to follow Mack's Mom here and cut up the pill for a few weeks. Thanks for posting this Kelli!! dizzyde

I get all of this too! So frustrating... if someone else is driving, I'm sometimes so nauseous by the time we get where we're going, that I end up having to stay in the car in the parking lot and recover. Should have just stayed home! lol. I did find a strategy though! Sea Bands. They're *great*. I put them on right before getting in the car. You have to follow the instructions on the box to get the most effect from them... but they're basically an acupressure tool. A little plastic bump presses on your inner wrist to ease motion sickness. I press on the nubs too for a few minutes to really activate the pressure point. I feel like I should be playing tennis in them, but that's ok - as long as I'm not sick! http://www.drugstore.com/qxp152291_333181_...lt_one_size.htm Also, I asked my ANS specialist (who's also a migraine specialist) about this whole motion sickness thing and he said it's migraine related. I then said "yeah, but I don't have headaches with it - I just feel like I'm going to be sick". He said that's what happens... it's all just part of the migraines we POTSies get. Anyone else hear anything similar from their drs?

I get the pricklies too - but mostly in my face/ forehead area. Notice it most when I'm walking. What Erik said about it being BP related makes sense to me as I almost always feel a drop in BP at the same time as the prickles start. My neuro said it is very common in POTS, although arms & legs are the more common places, in his experience. If it's a neuropathy, though, sounds like I should get it checked more thoroughly like some of you have. How do they test this??

Everyone here's totally right, Janey. It's not like you're just lazing about or taking advantage of anyone... you're trying your hardest and actually doing the best you can to be an active and productive human being despite everything you have going on, and just how low and awful you feel. So many people who are ill do just give up and give in and you're not! It also helps to just scream & let it out (when no neighbors are home to think you've gone mad, of course!)

I seem to have (or at least notice) palps most when lying down too! Esp after dinner through when I fall asleep. Glad to know I'm not alone. Has anyone had a Dr tell them POTS-related palps are having a negative effect? It's certainly easier to ignore them or blow off their significance if there's nothing bad about having them in the first place. Then they just become a nuisance... Thanks for all of those links BellaMia! I can't believe how many things have hidden caffeine! Lip gloss? How weird is that. I love the idea of the caffeine testing system that WashU is coming up with (http://www.howtodothings.com/health-fitness/how-to-identify-hidden-sources-of-caffeine)! Could be really helpful to some. I used to be able to have so much caffeine with no effect. So sad. Jump: on the magnesium supps... what type of mag are you talking about? There are different kinds, and from my experience, they can be hard on fragile digestive systems. Any wisdom there to share? I'd certainly be up for trying it if I didn't think I'd end up sick from it. Thx

I try to drink a lot of water - and do have my salt tabs everyday. But I feel like I just pee it all out, which makes it hard to keep drinking... I have to go all the time! Sorry to be so blunt, but that's what happens! If it is making the palps worst to drink less then I obviously need to be better about it regardless. I haven't had caffeine in 5 years... drs had me stop it for anxiety. i know a little sneaks in with the occasional decaf or chocolate - but I notice that I still have lots of palps even when I don't have either. Still a good point -- I'll talk to my EP about diet to see if there could be anything else. This really helps

Hi everyone, I just want to see if this sounds like anything anyone else has experienced. I started taking a BB (Pindolol) in August and am now on 5mg 2x/day. My POTS neuro doesn't want to increase that dose because I'm so sensitive to meds, so he added Mestinon in October to increase my BP and lower HR more. But here we are after a month & a half of that combo and I'm still getting loads of palps everyday. I even tried going completely off Cymbalta (NOT fun with the withdrawal!!) since they suspected that could be exacerbating the palps, but I've been off it for almost 3 weeks now and no change at all... still getting lots of palps daily. Cymbalta clears the body in 4-5 days, so that's definitely not the problem. I'm going to get an appt with my EP to get his opinion -- but would like to know what you all think. He had said that the palpitations weren't actually anything bad... just the ANS acting on the heart and making it misbehave. My POTS neuro, however, says they're an indicator of increasing HR. Hmmm... thoughts? Thanks!!

Janey, Thank you for writing this! Last night was one of those times for me when coming to terms with my limitations, and where my friends are in life compared to me, was just not working. I'm in my early 30s and have watched my friends get married, and now start to have babies, and move up in their careers, and here I sit. More than anything I miss my options! Before, I lived anywhere I wanted - new york, london - worked my butt off and traveled. Now I'm living at home with my parents and feel stuck! Hearing you talk about coming around to the other side gives me hope! Somehow I have to get there - as we all do. It's just so hard! And it's amazing how much our loved ones affect our ability to do so. My parents have been really supportive - most of the time. They definitely have their moments and I think they are also of the mindset that this isn't long-term and at some point I will be able to have a career again. My POTS neuro told me my case is most likely mildly progressive - so I've been struggling to come to terms with that while everyone around me is saying to get treatment and get better! One of the best things I did was take my mom to my POTS neuro appointment this week. I'd been going alone, so she offered to keep me company. I decided to ask her into the office to take notes since i'm often too busy answering the dr's questions and being examined to write. In the process she came to a much greater understanding of what this is all about. One of the best parts was that she actually heard the dr say that he can't explain certain aspects of my illness because medicine hasn't caught up yet! Up until that point I think my family had been looking to me to have all the answers. That doesn't mean she totally gets it now - but it was a HUGE help! Janey, your situation is certainly different - and it sort of depends on your dr's approach and whether you'd feel comfortable opening that private space up to your family. I hesitated at first, but in the end it was a good decision. Speaking of appearances: how do you all handle putting on a good face for friends vs fessing up to how you really feel? who wants to be the downer friend talking about her chronic illness, right? It's hard to walk the fine line between letting friends know what's going on so they can be there for you - and being a bore. i'm so self-conscious of this! i always feel like it's a bummer to talk about my situation, so I hesitate to tell anyone at all... then of course they can't support me because they don't know what's happening!

thankful - i started pyridostigmine the same day as you i'm on a mini-dose to start though (due to med sensitivity), so I haven't had any side effects or benefits yet. I have to up the dose in a few days. Mine was prescribed by my POTS neuro, so I'm interested to hear Mayo suggested it as well. Looking fwd to hearing how you do!

I tried my brother's chest strap/wrist watch combo but it's just such a pain... and constricting. So I ended up with one of the Brookstone Heart Rate Rings. I was skeptical at first, but I wore it while doing a loop monitor for my cardiologist and subsequently was able to find out that the ring was accurate! the heart rates I saw matched those the loop recorded. and it comes in pink I think I paid $35.

I'm guessing your appointment is today - and I hope it goes well for you. I live in DE and have been going to another osteopath here for craniosacral therapy for 2 years now. If your experience is anything like mine, it's very subtle. "Manipulation" is almost too strong a word cause it makes it sound so forceful, when it's really very gentle. For the first 2 months of treatment I didn't experience any change myself, but stuck with it at the suggestion of several people - and because the feedback the osteopath was giving me sounded accurate to how my body felt. Then all of a sudden I started to feel a shift, and since then I've been going every 2-3 weeks for treatment. I find it the most calming thing - and it's also the only thing that can really relieve my migraines! I think our POTS bodies are so easily upset by stimuli... so if you find something soothing then it's worth it. I refer to craniosacral as "re-booting the system". Good luck!! I hope you find something helpful in it.

So much great help! Thank you for your responses. I'm taking it all in & so glad to know you ladies are out there and strong! Julie - my parents are going to be in the area probably about another year or so, then moving south (where it's too hot for POTS!), so that does give me some 'buffer' time to get settled, thankfully. The bummer is that I only moved back to my hometown b/c of becoming ill (I was in nyc & london prior, while still working), and don't have any other close family or many friends left here - they've all moved away. But being on my own will certainly force me to improve my social life! I also know my mom would move in w/ me if needed it for a while I hear you about your worries about your son. Organizing all of these meds & supplements everyday is crazy - esp when the brain fog settles in ("have I taken that one yet?")! With such a strong mother he'll do well! You sound like a good role model. Liz - I'm loving the constructive ideas! I had been thinking about stock-piling groceries, and maybe when I'm feeling good I can make things for the freezer. The grocery w/ pharmacy is a fab idea & I'm going to investigate who has delivery here. Parking lot distances & stairs in potential buildings is also key. I have a feeling I'll be PMing you as I get closer to this move! Melissa - I'm a graphic designer! So we have similar career paths. One of my hopes is to get more home-based work. I've been doing this with some success, but still get too tired to take on much of that. Maybe 2 hours here and there, so the on-location scenario intimidates me at the moment. Working every other day sounds like a great idea -- have you found it difficult to find freelance jobs that work out that way? I am completely with you on the limited scheduling front. If I have errands, that's the end of it for me - time to nap! Don't you marvel at how you managed to fit so much into a day pre-POTS?

Hello lovely POTS people! I am struggling here. How do all of you single folks manage to live with POTS/etc when you have to live alone? I was extremely independent in my 20s, working by butt off & traveling all over the world before becoming ill and having to move back home to my parents (who have been *amazing* btw). Four years of searching for answers, and here we are. I finally just got a POTS dx a few months ago, but my parents are ready to retire and sell their house. So I am faced with the intimidating prospect of having to strike out on my own, single, in the midst of figuring out this new illness, and unable to work very much or have energy to do much of anything. I know that I've been incredibly lucky in having them here for me. But what was once so easy (being independent) has now become rather difficult due to challenges presented by my various illnesses. To be blunt... I'm scared! So... how do you all support yourselves emotionally, physically, etc? How do you manage grocery shopping when you've crashed unexpectedly for 3 days and can't go out? Or don't feel safe driving on one day or another? Do you have dog-walkers? Are any of you unable to work outside of the home? I'd love to hear your strategies, stories, etc! This feels like a huge, steep mountain at the moment...

Last week I asked my neuro/POTS specialist in Balitmore about getting the regular & swine flu shots and he said he has no problem with his POTS patients getting the regular flu shot, but to avoid the swine flu shot till there has been better testing on it. He mentioned the 1970s shot mentioned above in other posts - and said it did cause autoimmune problems and the government had to reimburse people. He warned against anything that might exacerbate POTS symptoms ? and as this is an unknown, it could cause more problems in the end. I plan to heed his warning, but I am also worried about swine flu. I'm sure many of us are the same... we stay sick longer and take longer to get back on our feet. I'm going to be anal retentive about hand-washing!! And maybe try to pick up some surgical masks at a medical supply store before they run out (which they will when things get going). One of my docs was telling me that other countries are already having people wear masks in crowds, which makes me wonder when that will start here. It's horrible to feel/sound paranoid, but with us POTSies it seems prudent

I tried acupuncture once a week for 6 or 7 weeks and had a crash/POTS episode for 2-3 days after every treatment. It was too much for my system - and this was with the acupuncturist 'taking it slow'. I didn't stick with it cause it was just to over-stimulating. I have since found some success in craniosacral therapy with an Osteopathic Doctor. It's also the ONLY thing I've found that can make my migraines go away!! The first few sessions I didn't feel anything, but then there was a breakthrough. Overall, it's a calming experience for me and can help during crashes. I go about every 2-3 weeks - more if I'm particularly POTSy. I do have to take it slow after treatments as I am spacey for a few hours, but it passes. best of luck

Thanks for posting this futurehope. I have been so frustrated with having to pee every 15 minutes from drinking so much liquid, yet feeling thirsty at the same time! One of my non-POTS docs recommended a urine electrolyte analysis, but flop's system really seems to make sense. I'm going to google Prof Hainsworth's study to show my neuro (if anyone has a link to post for it, would be much appreciated... I'll post it if I have success finding it.)

Thanks for all the info everyone - this is extremely helpful. It's nice that CC gives you a pamphlet... I'm just going to my local hospital, so they're not as organized I suppose. Heiferly - good luck with this and all the tests you're having at CC!

My doctor's prescribed a blood volume study. I've searched for it but not found a real description of the test - and am hoping someone will tell me what I'm in for. I was just told it's an hour long. I have to go to the Nuclear Medicine Dept at the hospital, so I'm guessing it's not your usual blood draw. Thanks!

Same here. Unrestorative sleep. I try my best to get 7-9 hours of fragmented annoying sleep and wake feeling groggy and then drag all a.m. I make a point not to schedule anything until 10:30 or 11 if I can help it! As for 5p fatigue... it comes in waves. I'm usually bad between 3-5... but can go a week being ok, and then suddenly have a few weeks when I can't do anything at all that time of day. I just sit and watch my family run around and try not to fall asleep (I'm afraid if I do nap it'll screw the fragile sleep schedule even more) It must all have to do with circadian rhythms. And maybe we are all just much more susceptible to having our rhythms thrown off... made even worse by the sleep difficulties many of us seem to have. Add to that bad circulation, lightheadedness, tachycardia... you have a mess by 5pm

Hi Steph, I don't have much advice since I'm also a newbie and am very much where you are - waiting for an appointment! I've also been trying to figure out what to take and when, and doing loads of research to prep for my appointment (it's next monday - I've been waiting 5 months!). I know I have POTS and am patiently waiting to find out what type, etc. So I just wanted to send you a virtual hug and say welcome - I'm sure you'll find everyone on here as wonderful as I have. They know so much! Best of luck unravelling your puzzle. This is the best place to come if you're frustrated or just need to feel not so alone stay well, dizzyde

Absolutely. Before my POTS diagnosis i thought it was just extreme fatigue. I get woozy, lightheaded, feeling like my body weighs ten tons yet that i'm floating at the same time. Even on a good day I only last a few minutes and then start getting black & fuzzy around the edges of my vision, really nauseous, and it's like if i don't find a chair right away i feel like i'll collapse. My Endo said this is common for POTS, but to hear it from you all helps.

Gelann, I live in Wilmington, DE. There aren't any POTS Drs here, and unfortunately no university hospitals. I've been told by several sources that Philly doesn't really have anyone either (if anyone knows otherwise I'd *love* to hear). I'm driving to Baltimore for POTS. It's about 1 1/2 hrs away but there's a leading Dr. there. I'm currently hunting for a new PCP who will 'get it'. One of my specialists is going to send me a list of Drs who he says are compassionate & will be more likely to help me work through things. PM me if you'd like to stay in touch - I'd be glad to share what I find out. I do have one guy to recommend here - he's a fabulous osteopathic physician & acupuncturist who does a range of therapies that seem to help calm the body. He's really helped me and is an amazing advocate. He looks at the whole patient as well as symptoms, & has a great integrative health team. Even though he's not a POTS doc, he was the first person to suspect autonomic dysfunction in me, which spurred my going for a diagnosis. PM me for more info... dr names, etc. dizzyde

Hi Broken_Shell, I'm currently on Cymbalta, but at a micro-dose level (my doctor says I'm "exquisitely" sensitive to meds). I open the capsules and count granules. I'm up to 30 granules/day now and definitely feeling a difference in my POTS symptoms. Although there is still plenty of exhaustion - it seems to have taken the edge off the extreme fatigue so that there are days I have more energy. The beauty of the micro-dosing is that I didn't have one single side effect going onto it! It's a subtle approach, and definitely requires patience. Of course as I write this I'm realizing most of us here are probably masters at biding our time - waiting for doctors appointments and meds to kick in!! While we are all very different & one med may be great for me/bad for someone else... in my experience this general approach has been helpful. best of luck dizzyde

Hi all4family... i totally know what you mean w/ wii fit... I basically ignore the body test function now (beyond the first time, when you *have* to do it). It said I was 58 or something the 1st time (I'm 33), then 37 the second time which was a relief. If I just get on there and do the exercises I like, then it's a positive experience & i don't have to dread seeing my weight or "age" on display! Love it when a new exercise gets "unlocked"...