AllAboutPeace

I'm a big fan of the first article (by Dr Raj) that McBlonde posted for you. I have even shown it to an ER physician who agreed to give me IV fluids - it's a very helpful document. Good luck with it!

I made a brief appearance at a family reunion today. In hindsight, I shouldn't have gone because I was feeling awful, but I attempted to do it for my family. No one at the reunion other than my immediate family know that I'm sick. Anyway, I was sitting, rather sloth-like in a chair with my feet up on another, shoveling potato chips into my mouth hoping the salt will help, when an unknown relative came to look at pictures that were on the table beside me. My son loves to chat and also likes to indirectly inform people about my illness - only he sometimes forgets what it sounds like to others. So, he said "oh, I guess you're not going to play baseball, Mom, because you're a POThead". Well this woman tucked her head down further seemingly to pretend she didn't hear, but she clearly heard him. My mother and sister and I were so surprised by what he said that we didn't have an immediate way to clarify it. Well, when the woman walked away, we had a good laugh about it. I left shortly after, but told my mother that she might want to clarify.

Oh yah, I'm hearing you on the weight gain and bloating. I hate it...and the closet full of clothes that I'm growing out of. It's not like shopping is an option (physically or financially). I actually stopped doing the extra salt capsules about 5 days ago and I've been pretty much on the couch or in bed for the last three days. Now I'm having constant chest pains again which I am usually able to minimize. I think it really does help me because this happens everytime I stop it. On the upside...I'm down 5 pounds. It wont last though...when I'm back on the salt tomorrow.

Issie: Good for you for getting through it! I hope you get good results I have issues with claustrophobia, too, so I started to fill ill just reading your post. When I was an in-patient and having tons of testing done, I didn't bat an eye at any of the poking and prodding - I felt so terrible I didn't care what they did to me...until I got to the MRI. When I was talking to the tech before the test, she said "oh, your doc should have given you something, if your claustrophobic". Yikes...I thought about running out of there {well, actually I guess I'd have to take several minutes to change out of the gown, pause to catch my breath, re-attach my telemetry monitor, get back to my wheelchair, slump down in it, find my husband and get him to wheel me out of there - so the dramatic effect would have been lost a little }.. I used every visualization/ meditation technique I could think of to get through the test. Luckily they stopped me part way through because I felt like that suffocation feeling was becoming more than I could handle.

Congratulations Hanna! I'm very happy for you . My husband and I went through 4 years of infertility as well and applied for adoption. When I got the call (after the year long adoption process) telling us that we were approved, I had a really strong emotional reaction when I got off the phone (crying; doubting myself, etc). I had long since given up on the fertility drugs, so I thought those wide swings were over until I, surprisingly, found out a few days later that I was pregnant. I hope things go well for you!

Thanks for posting this, Naomi! I had no idea there was that much overlap between the two syndromes, so I thought it was finally time to learn a little about what all of you know already . I ended up following the links and watched a three hour talk by Dr Cheney about CFS and Diastolic Cardiomyopathy. I felt that there was a ton of really relevant information for Pots patients as well because of all of the overlapping symptoms. Really interesting stuff... he said the cardiac insufficiency theory could account for SOB, arrythmia's, MVP, chest pain that mimics heart attack, dyspnea on exertion, temperature dysregulation, food intolerances, etc, etc. Based on what he saw during my first stress test, my internist thought I had cardiomyopathy. He was soo convinced that he ordered a second echocardiogram (I just had one two weeks before) and was surprised when it came out looking "normal". I had changes in my ecg's as well. This Cardiac Insufficiency theory potentially offers an explanation as to why exercise might not work for some of us. I have struggled to try to exercise and still can't get beyond six minutes on the recumbant bike without bad effects. I know there are lots of potential mechanisms at play with Pots and this may fit in somewhere for some of us.

I'm sorry you are having this issue - it is definitely very frustrating...especially since you had a good doc to start with! A dr/patient match making service would be great! I totally agree with Jangle about finding someone involved with academics!! I recently travelled to see an EP/Cardiologist and she was excellent (competent, caring, interested and confident - but with no ego to get in the way). She has only ever had a few POTS patients, but hadn't seen blood pooling like mine before. She was keen to see me as a regular patient, but knows the travel would be difficult so she will keep it to every 6 months. She even contacted my internist back home to make sure he is comfortable with treating me with her guidance. She said that if he isn't comfortable, she wants me to come back to her. I was blown away by her level of interest given that she deals with life and death issues everyday. Anyway, I found out a week later that she is a prof at the local med school - so that really explained alot. She is in that "learning/teaching mode", so she didn't mind telling me that she had to go look some stuff up and meet with me again in 1/2 hour. I have a feeling, based on her reaction to it, that my purple feet are going to end up being mentioned in one of her classes. I hope they do, because med school is exactly where POTS needs to get some exposure! I hope you find the right match!

Hmm, this is a tough one, Naomi! I wanted to say that I'm successfully managing my symptoms because I feel like I am while I'm in my own house, but outside of here, it's a bit of a disaster (requiring lots of modifications and recovery time) and most of the time I just don't have the energy to do it. In my heart I feel like I will get better, but I wonder if it's partly that I'm afraid to believe anything else.

Bren, me too... I rest alot, but can't sleep in the day and I LOVED sleep too- before Pots. Now I realize it was a gift to be able to lay down at the end of the day, get comfy and drift off to sleep knowing that you would have a good, restorative rest. I actually believe that the world would be a more peaceful place if everyone had the privilege of a good night sleep. So many knee jerk reactions and bad decisions are made when people are overtired and can't think clearly.

Welcome to the forum WesternMass! My numbers are almost identical to yours (and I'm not on any meds for Pots). Resting hr is almost always in the 50's; daily avg (with minimal activity is 70's); have some sporadic incidences of 40's while sitting/ up and around/ in the car, etc and while sleeping. My baseline BP is high 90's/50's. My standing hr is always tachy and would vary like yours as well. I have some other "electrical issues" with my heart according to my EP/cardiologist, but the basics are very similar to yours. I also was quite active and from all indications 'healthy' when I was hit suddenly with POTS last November- It was like a switch (healthy and active to incapacitated). Are you on any meds?

Hippychic, I'm so sorry that you are going through this right now I may have missed this in your other posts, but are you able to hydrate well (salt and water)? I know that we are all different, but that hydration made such a huge difference for me when I was at my absolute worst. I'm pretty sure it is what got me to the point where I can move around the house. Sleep position is definitely an issue for me too. My right side propped up is the only position that works, so I arrange my bed and myself so I don't move from that postion (I tend to have apnea on my back; chest discomfort on left side and tachy or nasty irregular rhythms on my belly). Hope something works for you soon...hang in there!

Excellent news!! You will be the best kind of doctor because you have been through so much as a patient...

That is soo awful that we are at the mercy of the doctors notes like that. Even with 45min to 1 hr long appts with my docs, I find it almost impossible to try to convey to them how Pots affects my life. Plus sometimes I've just felt soo hopeless that I feel like I have to put on a smiling "I-will-get-better" face because I feel like if I say how bad it really is, I will end up in a meltdown leaving me in a heap of mush on the floor. I've since learned that isn't helpful when it comes to the reality of disability claims (although it is helpful in keeping denial alive ). Before my last specialist appt. I made notes about my current symptoms; a brief overview of my level of functioning and areas that I am restricted in, and my bp and hr for the past 6 weeks. I gave these notes to her and she was happy to add them to the file. I just figured at least she could refer to these because I knew there was no way I would be able to convey all of that info to her in an appt. Would you be able to go back to these docs and go over in detail your current symptoms and limitations, so that they could update the file with that information? Hopefully, the lawyer will talk about the variability of symptoms; waxing and waning, etc, so that even if it appeared mild to the doc on that day, it is not necessarily accurate over time.

Isn't she the doctor in the "Changes" video? http://forums.dinet.org/index.php?/topic/19887-changes-living-with-postural-orthostatic-tachycardia-syndrome/ It sounds like it should be a really great consult for you. I hope she is able to help you

Dani That is very high hr and feeling like death afterward can't be a good thing... I end up on the floor for an hour -unable to even lift my head up (soo dizzy and feeling horrible) after 12-15 minutes on the recumbant bike. After trying a few times with the same result, I decided it just wasn't worth it for me (I felt like my body was screaming "I'm not ready for this"). I know we have to push ourselves, but this definitely felt counterproductive for me, at that stage. I can do 4-5 minutes on the recumbant bike 5 times/day without symptoms and when I'm in that routine, I've noticed improvements with brain fog, energy level, etc. It has required a big shift in my thinking (and of course huge disappointment ) because I realized that I just can't push through, like I could before I had Pots. I'll be happy to shift my thinking back though, anytime my body is ready to co-operate Whatever you do...trust your gut feelings and be careful!

Wow, that is great!!! He will definitely go to bat for you given that he has personal experience...

mama_destiny, I agree with Chaos about the doctor change. I think you should trust your instincts - at least get a second opinion. I would definitely make sure that your doc is aware of that incident before taking the beta. I had the same thing happen last week (hr in 40's while up and about) and it has happened a few times before. I know my hr sometimes goes into the 40's when asleep (which I have been told is ok), but I hate it when it goes there when I'm up and around. It makes me feel strange too and like I need to cough/ sort of a choky kind of feeling. I recently saw an ep/cardiologist and she told me that with my lows she wouldn't even consider a beta blocker. What is your resting hr usually? Most of the time my resting rate is in the 50's. I can handle the tachy much better than the 40's.

Wow...I never thought of the heels...that's interesting. I have looked at my wedges a few times, but just figured I wouldn't have enough coordination/balance and I'd end up flat on my face. Maybe I'll pad myself up and try it around the house

Welcome to the group! I'm sorry that you have been living with this for 5 years...but glad that you have arrived here so we can all learn from each other. I did not have a vaccine experience with my onset of Pots, but I did find another post from awhile back where it was talked about. It may be helpful to you if you haven't seen it yet. http://forums.dinet.org/index.php?/topic/18024-vaccine-pots/page__p__164476__hl__vaccines__fromsearch__1#entry164476

Wow, Sue that is great that you discovered your Dad's issue! I also have a blood pressure app, but I wouldn't say it's a great one. I did bring 6 weeks worth of data (in two compact charts) to my EP/cardiologist appt last week and she found it really helpful to have it all charted. That concrete data makes a big difference to the docs (in my experience at least). At a glance she knew that my hr and bp were lower than she wants them to be. I'd love to have a link for a better bp app too, if anyone has one

That's interesting...thanks for sharing that link. I will definitely be trying to figure out how I can work in some ab exercises.

Jangle, You definitely need some new doctors... Oh, and can we have unlimited chocolate on Pots Island

lifeless - Welcome to the group! I hope that one day you will be feeling well enough to want to change that screen name. For now though, I hope you will find this group to be as helpful and supportive as I have found it to be.

Perfect, thanks...I'll have whatever you're having It's funny - a few friends were over recently and they were hesitant about having a drink, since I can't. Of course, I insisted that they do. I will live vicariously for now!

Linj & McBlonde, I'm so sorry that you both are going through this right now. I think we have all felt what you are feeling to one degree or another, so please know that you are not alone in any of it - there is a whole group of people here who understand how tough this is. You will find your strength again but until then you can borrow some from the rest of us.(((hugs))) The extremes of Pots can definitely affect what we say and do at times, but always remember that you are soo much more than this illness. I know a song isn't going to make it better, but here is one that I like to listen to when I'm overwhelmed with Pots - so if you are up for a listen...