hholmes13

Thanks for the advice! I put a call in to neurology today so now I'll just be waiting for a call to see what he thinks. I'm hoping now that this has been going on for about a year he'll quit thinking it's just a temporary problem and start looking into more ideas for causes.

Interesting that you brought up this protein. We actually are studying NKCC1 in our lab right now. Although I think most of the forms we're currently using aren't the human version. We do a lot of work with membrane transport proteins. Are you thinking that the connection with the inner ear could be causing some of the symptoms of POTS?

Interesting story, and I'm glad he's doing better. I agree that punishing someone for being ill doesn't make much sense. I try to limit how much I let this illness interfere with my plans/life, but some days I know if I go to work I'm setting myself up to feel horrible for a lot longer than if I just stay home and rest. I do agree that's it's good to make the most of what we can do. When I'm feeling bad, I try to limit how much time I lay down so I don't become too deconditioned. Jen, are you coming to Mayo in Rochester? That's where I live/work. Maybe I'll run into you if that's where you're going.

I've got no advice for you as I don't have any experience with this....but I just wanted to send some positive vibes your way. I hope you get things figured out soon and start feeling better soon! Good luck!

Haha Jen that's so funny! Glad I'm not the only "smurf". Yeah I think I am a little paler now too (and I was pretty pale before!), and I've also lost almost 20 lbs since this came on. Maybe my veins are closer to the surface now? Anyway, it's always interesting to find out we're not weird with some of the things that happen! Heather

I'm curious to see what people say about this as well. I've always been pale too, but since this stuff came on...I joke that I look like a smurf because of the blue hue to my skin from my veins. I showed my hubby because I thought I was imagining it and he said it was really weird how much they stood out. (And I'm not pregnant either)

So I've been on a bad stretch for the past 3 weeks that seems to be worsening. I keep thinking things are going to lessen up and then it continues to get worse. I haven't spoken to any of my doctors in well over 7 months. They had no plans to follow up with me. I'm thinking of contacting my neuro doc to see if he has any suggestions. I'm frustrated because his answer for everything before was "You need more sodium." I was taking in at least 3-5g of sodium each day and it didn't really help. It did bring my bp up to a normal level again but didn't take away symptoms. That's why I've just pushed through the last half a year even though I've still had plenty of bad days because it didn't seem to help. I'm getting close to the 1yr mark from when I first became symptomatic. I was so bad last year that I was on STD for 6 weeks and had to finally go back because we couldn't afford to have me getting paid 50% even though I didn't feel better. I'm just scared of regressing back to that point again. He officially diagnosed me with OI/blood pooling even though my ttt had a hr increase from 55 to 120. He said that my hr increase wasn't sustained long enough to be POTS. I had the ttt just 3 days after my symptoms started. (My primary care is at Mayo in MN and I had had a similar episode the previous year so the family med doc suggested we check it out with a ttt.) At the time, tachycardia wasn't an issue for me too much. However as weeks went on, tachycardia became a huge problem. I could barely walk up a few stairs without my hr going up to 150 and I would get really short of breath. I would get tons of palpitations and chest pains. At first he said it was just because my bp was so low. However, it continued to worsen even when my bp increased to a normal level. That's when he finally gave me the beta blocker. For the most part, the meds I'm on have been making me able to get around (Midodrine & Nadolol) okay. However, now everything is getting bad again but I don't know what else to have checked out. I'm wondering if my diagnosis is correct or if it is POTS and/or something else. I just get frustrated because the neuro doc just tells me to eat more salt. He never did any sort of endocrine testing last year. They did check my cortisol to rule out Addison's but that was it. I did have a sweat test, and that was pretty normal aside from a patch of neuropathy on my right leg. I wonder if I went off my meds for a few days if a ttt would yield different results. I'm just frustrated because I'm at a place that researches autonomic dysfunction but feel like I don't know how to get diagnosed properly. He had said that he thought within 6 months I would be feeling 100% normal again. That is most definitely not the case. I apologize for the novel of a post. I just don't know how to proceed or what to ask of my doctor. I've been avoiding going back because I got so frustrated last year. How would you handle this? Does anyone have any suggestions for things I should suggest to test for?

Hahaha that made me laugh so hard! I've had a rough few weeks and I needed that. I'm sorry that is based on real experiences, and unfortunately I can relate a little bit too...however your cartoon was great!

A lot of that looks really interesting! It was fun to scroll through the researchers because my neurologist is listed as an author on a few of the talks/posters. I agree that they definitely pick some awesome locations. Glad people are doing work on this stuff. I agree with you Issie. Rama would definitely be a good representative for us! I'm always amazed at the level of understanding and info he shares.

Midodrine has been a life saver for me! My POTS/OI is definitely not as severe as many of you on here. I was horrible last April-August but then it started to get more tolerable as the temps started to cool down in fall. I'm pretty lucky in that I don't have the horrible side effects from it. I get the goosebumps and hair standing on end and it makes me colder than usual (which kind of stinks because I'm normally freezing anyway) but that's about it. I used to take 10mg 3x a day but have cut it down to 2x. When I'd take that 3rd dose, the shivering and goose bumps would get so bad that I just couldn't seem to get warm. Once my doc paired this with Nadolol (10mg) to control my tachycardia I can get through my days a little easier. I can definitely tell when it's kicking in and wearing off though. Now that I don't take a third dose in the evening, I just have to be careful getting up and down. The other night I wasn't thinking and stood up too quickly and reached my arms over my head to stretch and ended up collapsing on the floor. Oops. However, it really helps me out when I'm getting going in the morning. I hope you are able to get things figured out! I agree with others that you may need to combine it with something else to really get the max benefit but you should definitely check with your doctor. On a side note...I find it so interesting that we can all have such similar symptoms in our illnesses but all react to medications so differently. It really feels like the way to treat POTS is just throw a bunch of stuff at it and hope something sticks. Talk about frustrating!

Mine was a sudden onset that knocked me out of commission for a while and then some improvement with meds. Now I have quite a mix of good/bad days but have not come anywhere near to where I used to be. I've been pretty symptomatic for the past few weeks and am hoping that it's going to let up soon!

I have trouble with both. Being outside on really hot humid days make me incredibly symptomatic. Although I had days last summer where it was 95 and I had goosebumps and almost went inside to grab a sweater. I actually made my husband leave flannel sheets on our bed all summer! My symptoms eased way up when the weather cooled off in the fall. The only problem I have now though is I'm freezing all the time. It seems like I can't keep warm. I actually had days at work where my lips turned purple. I just tell people my thermostat is broken! I am getting nervous now that the weather is warming up...I just don't want to end up super symptomatic again.

Thanks for the insight ladies. My doc basically told me that there's not much they can do. I'm on Nuvaring and she said that removing it can cause a vasovagal response but that doesn't make sense for me because my symptoms worsen before that. I saw the other post on here about menstrual cycle and POTS. Interesting stuff. I guess for now I just have to suck it up during that time and brace myself when it rolls around!

Hi Everyone, I hope you all had a great time during the holidays! I've been MIA for awhile because life has been pretty busy and my symptoms have been relatively manageable. I feel like I may have seen someone talk about this before but couldn't find the post on it.... Do any of the ladies here find that their symptoms get a lot worse during their period? I can practically sit down with a calendar and circle the days I am going to feel horrible. I thought I was imagining it at first, but I've been tracking it for the past 3 months or so and like clock-work things get bad during that week. I may have random bad days during the other weeks, but nothing like when my cycle rolls around. I put a call into my doc to see if she has any suggestions. For those (if any) of you deal with this...what do you do about it? Is there any way to prevent it? Any insight would be much appreciated! Thanks! Heather

Sorry you're feeling so lousy! I know what you mean though. I've been fortunately doing pretty well for the last 2 months with just a few bad days. However, at my worst I had no color to my face or lips most of the time and looked like death. I'm naturally a blond, but I felt like that color was washing me out too much. I ended up going red for the first time and loved it. It made me look I actually had some color in my face and it was a bit of a boost because it just felt good to do something new. Anyway, I really hope you start feeling better. POTS can take so much out of a person. Just know you're not alone!

Interesting! Thanks for sharing! I had my gall bladder out when I was 20. My problems started at 17 years old. I could hardly eat anything for a few years. I had every stomach GI test done and nothing showed up. However when they finally took out my gall bladder it was covered in scar tissue. Everyone kept saying I was too young to have gb problems and that I didn't fit the stereotype because I was not overweight.

That's really interesting...I had a weird 2-3 week stint of POTS-like symptoms in 2010. That was about 2 weeks after I had the 2nd dose of Gardasil. I had my third dose in September of 2010. The chronic symptoms started in April of 2011. Hmmm....not sure if there is any connection or not as I've always been prone to light-headed/dizzy spells but it never lasted for so long until 2010. It was just small bursts that would make me feel weird for a few minutes/hours. Anyway, thanks for sharing the info, Naomi! Heather

I was just thinking about this issue the other day! I haven't really lost anything, but I feel like my brain just doesn't work right anymore. I've had so many instances lately where I thought I read something or did something correctly and then I go back and it's completely wrong or incoherent. I've never been like that before! It makes me feel like I'm going nuts or something.

That's wonderful!! So glad to hear great news! You have a beautiful daughter by the way. She's talented!

Hi Jenny, My Mayo experience is likely different from what you'll be going through. First, I work there so all of my insurance is through them anyway. Also, I didn't go through the POTS clinic. I'm not totally sure what that all entails. However, I can tell you that there are a lot of great doctors. Like someone else mentioned, the collaboration between doctors is great. Since all medical records are electronic, the docs have no problem bringing everything up and seeing what other doctors did/thought. As for having someone go with you...it probably wouldn't hurt. If your symptoms are really bad, it might be nice to have help. However, they do have people whose sole job is to transport patients from one appointment to the next. So, you definitely will have help there if you need it. Also, there are a ton of hotels connected to the clinic. Most of the buildings in downtown Rochester are all connected directly to the clinic. (Since you're coming in November, that's a good thing. We could have snow already by then. ) I wish I could be more help for you with this. If you have any generic questions about Mayo or the city of Rochester itself, feel free to message or email me. I've lived here almost 5 years now, so I know the area pretty well. I sure hope they help you find some answers! Heather

That's great! I hope you continue to make progress! Good luck!! Heather

Just wanted to add a positive note today...I think I may have found the right combo of medication! I just started a beta blocker this weekend, and it is definitely taking away the tachycardia. My only big complaint is how tired I am from it and that I feel like I'm going to throw up. Once the side effects go away though, I really think this will help. I've gotten periods of time here and there where the side effects have lessened and I feel almost normal. I'm taking 10mg of Nadolol in the am. My doc wants me to take 20mg starting this weekend, but I think I am going to stick with the 10mg dose. This dose has already made my resting hr drop down to 45. I think I'll end up in the ER if I double it! Anyway, I'm really excited. I'm hoping this will allow me to start getting back to my normal routine a little.

Hi sue1234, It looks like an interesting article. Do you have the full-text? All I could get was the abstract and it wanted me to pay $20 for the article. Sorry you hit a dead end with the transporter stuff, but it will be interesting to see what your tests show. I had never heard of Hartnup disease. I think I would freak out if I had blue pee! I'm not sure if myself or boss will be able to be of much help, but I'd definitely be willing to look at the article and see if I can find anything. Heather

Hi Shayna, I'm living in MN, but I wanted to let you know I see a therapist regularly and it helps loads. I had stopped seeing her for awhile, but after the POTS came on, I started going again. It really does help me stay positive and also assess what I need to cope. It's a great way to unload the stress this stuff causes. Good luck. I hope you find someone helpful! Cheers, Heather

Hi Everyone, My neurologist has decided to try me on a low dose of a beta blocker (Nadolol) to see if it will take care of all the tachycardia I've been getting. He's having me start with 10mg in the morning for a week, then going up to 20 mg after that each morning. (The morning is when my symptoms are the worst.) My bp is much more stable now, but I'm still a little nervous. Normally, I tend to be slightly hypotensive and a slower hr (~95/55; 55bpm sitting). However, after I've been taking in so much sodium my bp now hangs around 112/75. I'm hoping this isn't going to counteract my midodrine too much and lay me out. Has anyone had experience with this medication? How did you tolerate it? What kind of a dose were you on? Any input would be much appreciated! I start reading about all the possible side effects from these medications and get a little nervous. Thanks! Heather