AllAboutPeace

Thank you soo much for this info!! This is great - I'm always looking for alternatives to Gatorade. The heaping piles of sugar or sucralose makes me cringe everytime I drink it. Now I just need to find out where I can get it.

I, too, would love to be able to have a drink once in awhile! Like Anoj, the last pre-pots thing I did was have two drinks - next thing I knew I woke up on the floor of a restaurant -oxygen, IV's, an ambulance ride and life has never been the same. I have never had an issue with alcohol before and I know the alcohol didn't cause my Pots, but it definitely contributed to me ending up on the ground so I do feel that aversion towards it. Relax86 - I understand where you are coming from re: meds. I've had the same hesitations. I think alot of it is just trial and error, but I feel like my body is such a confused mess right now that I hate to add anything new to the mix (especially with all of the potential side effects). I'm just 7 months in too and haven't tried any...yet... I think it would be great for you to see a specialist if you are able. Now that I've seen someone with some knowledge of Pots, I don't think I could ever be ok with those blank stares from my local docs again. It makes a big difference when someone understands the various mechanisms involved and how it affects your life.

Welcome to the group! What an awful way to start a new decade for you That's great that you have a referral for Vanderbilt. I hope they'll be able to help you figure some things out. Did you notice any difference at all with the gluten free diet? That's wonderful that your rheumatologist took an interest and was able to help you out ...can't say the same for your gp's replacement... Re: your question about "flare ups", etc. I can't wait to get past this "flare" it's been 7 months and things are pretty well the same (I am close to your age and vegetarian). I also had no previous health issues before POTS. Everyone seems to be on their own journey with this and there is lots of variability in what people experience. I have not had vaccinations prior to getting pots, nor have I been diagnose with CFS, but if you do a search for it on this site you might come up with something. I'm sure you will get lots of great information and support here!

Thanks so much for sharing my excitement about this It is my wish that everyone should have doctor experiences like this. You are all so amazing to share of yourselves through your stories, information, reassurance and support !!! ...I actually don't like to think about how I'd be dealing with all of this without this group... I hope you all have better days ahead

Anoj, I think that sounds like a great improvement from your last job! (I remember your earlier posts) I, too, have previously taken a position for less money. At the time, I asked myself how much money my sanity or sense of peace would be worth if I had to pay an actual dollar amount for it and truthfully it's worth alot. So, I looked at it as if the reduction in pay (X amount of dollars) was actually going to pay for my sanity, sense of peace (or as you said "your soul"). It's a mindtrick, of course, but for me it made it easier to let go of that money and I never gave it a second thought once the decision was made. You should never have to feel the way you are feeling in your current job...

Thank you so much everyone! I soo appreciate all of your info, suggestions and support. I posted the outcome in a new thread. http://forums.dinet.org/index.php?/topic/20691-ep-opted-not-to-do-tilt-table-test/

Hey everyone, This is a follow up to this post from last week when I was anticipating my TTT.. http://forums.dinet....-upcoming-test/ the appointment: I arrived early for the ECG and had that done right away, so I had almost an hour before my tilt. I was fully prepared to tell them that I would not accept medication (unless there was a very good reason for doing so - not just because it is what they do everytime to non-pots patients). So, the EP/cardiologist saw that I was there early and she told me that she wanted to meet with me before the tilt. I thought this was great because it would give me a chance to discuss my concerns with her. She thoroughly interviewed and examined me (a brief poor man's tilt) and told me that she was cancelling the tilt test. She said that she could clearly see that I have Pots (based on significant hr increase, extreme blood pooling and drop in blood pressure a few minutes in) and there was no point in putting me through the experience of being on the tilt for 45 mins!! She said that it would just make me feel miserable and it wouldn't change treatment options. The test was simply to confirm the diagnosis. Does this happen?? I was really surprised (pleasantly so ). She said we could do the test if I wanted to, but my only concern was that I have the diagnosis. She said absolutely yes. I did give her a loop monitor tracing showing a 50 bpm increase in hr from lying to standing that I recorded last week - so that may have also played a part in her decision (???) Otherwise, the appt was great. She knows alot about Pots, even though she has minimal practical experience. She only sees patients with symptoms similar to mine about once/year but she has never seen blood pooling, so she was quite taken back by that and how extreme it was with under five minutes of standing. She wants a sleep study done; prescribed more salt (although I should adjust accordingly); discussed pros/cons of meds to try; has a plan in place for rhythm issues I've had. She knew the right questions to ask and everything I said seemed to make sense to her. She also said that she realizes how difficult it must be to live with something like this when people don't know anything about it and that can lead to misunderstandings/assumptions. She said "it's not like you can walk down the street and find someone else with Pots to talk to". I really felt like jumping up and hugging her She is not in my area, but she did say that she would be happy to see me as a regular patient if I wanted to do the traveling. She is going to call to speak with my internist to find out if he is comfortable with taking this on and doing all of the follow up necessary. Either way, I will see her again in 6 mos. So a doc who is competent, confident (without ego issues) and understanding...maybe I should see if she is open to cloning

Thanks so much for your input and experiences everyone! No one in my current world can fully understand my concerns here - so it's so helpful to know that you all are out there! I've been told a few times that I should just 'trust' that they know what they are doing. Not sure how exactly I'm going to handle it yet...

I'm not normally someone to freak out about things, but I just had a conversation that has me a little concerned about this... I'm traveling to have a ttt and ep/cardiologist appt. I spoke with the techinican who will be performing the test on Monday. She said : she wants to get set up today for the test on Monday (obviously, it's not something they do alot) it will be 45 minutes they will look for symptoms and blood pooling after 1/2 hr they will inject me with meds to make my hr faster (30 bpm) they will not put me down if I am pre-syncope; will push it to see what happens don't worry they will help me out whatever happens When she mentioned watching for symptoms, blood pooling, 45 min test, I was encouraged thinking that she does have some experience with Pots. However, when I mentioned that my hr will already be elevated so there will be no need for medication, she said "oh no dear, your hr wont go up when you are on the tilt - it will stay the same". ARGH! So, I explained that I have pots and I just recorded a 50 bpm increase on my loop monitor when I stood up. Her reaction indicated that she had never heard of it. She then said "oh, but your hr went up because you were changing positions - you will be standing still here". Seriously 50 beats per minute from changing positions is normal!!!! She said that they always inject the medication as it is part of the test. When I questioned that in a case where there is already an increased hr, she said it will be up to the supervising EP to determine that at the time. {she probably left the conversation convinced that I have a "standing phobia" lol} I think I'd be a little more comfortable if I weren't having other undiagnosed rhythm issues and I know sometimes when I have had adrenaline surges at night it causes my heart to go into a spasm. I'm really not feeling ok with being injected with something to raise my hr and even though everything may turn out just fine, their lack of knowledge gives me zero confidence. I'm having my first visit with an EP after the tilt. I'm beyond frustrated with no one knowing anything about POTS - my heart goes out to those of you who have been on this journey for years because for me it's only been 7 months. Is there even a point in doing the ttt if you are not at one of the major centers that know how to deal with you ? Other than the confirmation of diagnosis...I'll still have doctors who have no idea what to do with me.

Naomi, I'm sorry this doesn't work for you I hear what you're saying that you just want to know something can help even if it is temporary. It could possibly mean that you don't have blood volume issues. Or, I wonder if 1l maybe isn't enough for some. I know the first time I had it - I was really weak and had just had back to back syncope episodes, but it took 1 1/2 -2 liters to get me feeling close to normal. When I had it the last time it was 1 liter and I didn't notice an immediate change, but it was the next morning that I noticed I could get out of bed within minutes after waking which was a huge difference for me.

I think it's a Pots thing perhaps having to do with low blood volume. My understanding of it is that after exercise the blood is going to your muscles instead of to your vital areas, so the hr increases to try to pump it to where it needs to be. I get extremely symptomatic if I try to push myself with exercise and I feel my worst a few minutes after I have stopped.

Hi all, I currently have a loop recorder (one that records for 1 min only when the button is pushed - with the exception of A-fib, extreme brady or tachy) for seven days. I bring it back tomorrow. I'm both pleased and discouraged to say that I haven't had any of the nasty heart symptoms that prompted me getting this monitor. So, I'm traveling to see an EP/cardiologist on Monday and having a ttt the same day. I'm hoping that my tilt will show an accurate picture of what's happening, but, as others have experienced, it may not {one time my resting hr stayed at 95 at the docs office- when it is 50's at home}. Technically, I'm only to use this monitor for those nasty events, but... It's been 2 months since I've had a poor mans tilt, so I thought I would take advantage of having the loop monitor on, by recording a supine-to-standing moment while I'm in my own house. I recorded a tracing this morning of a 50 bpm increase within one minute. I don't think the doc will accept that as a true measure since no one was actually here to witness it, but I'm hoping it will be enough to show that the issues are current if things don't happen in a textbook fashion on testing day. Can anyone think of any other data that I could get from this that would be helpful? Thanks

That sounds like an amazing experience, Jen! Please keep us posted on how you are doing...

I've noticed this too. I told my doctor a few months ago that its gotten so I can function pretty well around my own house (minus lifting, laundry, vacuuming, etc), but I would like a life beyond those walls. All of your explanations make sense as to why this would happen. I've had a few people say to me "oh yeah, I know someone who has problems going out of their house as well - social anxiety". This is sooo not social anxiety though. I'm actually surprisingly comfortable looking like an idiot in public. I've had very limited outings for the past 7 months - mostly doc appts. So a few weeks ago, my husband and son went into a store to find the patio furniture that we had selected from a sales flyer. I stayed in the car with my gatorade and watched everyone come and go (amazed really as I watched them so effortlessly walk and rush around without any symptoms at all ). Anyway, my husband called me to say that he needed me to come in, if I could. So, I felt fine at the time and thought about how much I've been able to move around the house and be on my feet more. So, I went in and within 20 seconds of being in the store I peeked at my hr and it was over 130. I kept in motion and got to the patio furniture where I immediately sat. So, within the next ten minutes I was hit with exhaustion, brain fog, dizziness, headache. At one point my husband and son went to look at something else and there I was on display with the patio furniture. I was practically curled up in a ball with my shoes off/feet up when the sales girl came back from the warehouse where she had been checking on an item for me I couldn't even hold my head up while I was talking to her. In retrospect, I probably should have told her that I was having some health issues because she probably thought I had been doing some "self-medicating" of the recreational sort I ended up having to get someone to let me out a side door because I couldn't do the walk out the front. Targs66 - I definitely think adrenaline played a huge role here - that distance of a walk into the store would certainly not be one that would cause such extreme fatigue in a short period of time.

Frugalmama, I can definitely relate to what you said happened with your hr when you had to change hospitals. It's soo frustrating!!! The same thing happened to me when I went in to qualify for the Levine exercise program. My resting hr is 50's/low 60's, but when I went in that day it was 95, so I didn't get the 30 rise in hr. I couldn't believe it! That had never happened before and hasn't happened since. I was devastated at the time, but In the end I think it was a blessing because there is no way I would have been physically able to do that program anyway... I think you should have qualified anyway because I thought it was anything over 120 (http://circ.ahajournals.org/content/117/21/2814.full ) or maybe the new consensus document doesn't state that anymore (??). I hope things go well for you this time Thanks for the tip about Hamilton. That must have been disheartening after such a long journey. It's disappointing enough travelling 15 mins to talk to someone who doesn't get it!!

Bren, I think I filled out every square inch of paper available to write my various impairments and symptoms on in my forms!!lol. I just hope my doc notes will support all of that. It is my family doc who filled out the forms - but it is my internist who deals with my pots - so my family doc was filling it out based on the internists notes. Seems like a bit of a stretch... My doc did ask me some questions before he filled it out about what I am able to do, so I hope that helped him to get a sense of how things are. That is my dream to have a doc like that I will reassess things after I see the EP, but the next step would definitely be to travel further to see a specialist. Hopefully she (EP) has some POTS experience because she's in a larger center, but from what I've heard it's not promising. Unfortunately I'm meeting with her immediately following my TTT so I know my brain is going to be useless at that point! I'm in Atlantic Canada, so it would be a bit of a trek to get to a pots specialist in either Montreal or Hamilton, but if I need to I will. Thanks for the tips!

Oh, thanks so much, Bren! Wow, very impressive that you were able to get approved the first time!! I did send some different studies and Pots info along, but I really think my doc support will be lacking - partly because they know very limited about Pots and truthfully I find it really hard to convey the full scope of this illness to them in a doc visit (even though they are typically 45 mins to an hour).

Thanks for responding. Is the diagnostic criteria something different than the 30 bpm increase with standing? It's so ridiculous that they can turn you down without an official diagnosis. The label or lack of doesn't make you any more able to work...argh! I've heard some awful stories about situations from those who have applied in the past, for other well understood illnesses, so I can't even imagine how they will deal with POTS. I'm hoping that the minimal exercising I can do will count towards treatment. I hope that you are able to have some success with your appeal. If you have any tips on the whole process I would be grateful

I'm happy to hear that you are going in the right direction on your 1-10 scale. I remember that you were having issues with symptoms after eating carbs because I was having some similar at the time. It's good to hear that the diet helped. I hope you continue to improve

For those of you that have gone through this...I'm just wondering... Since there are no meds specifically designated for treatment of POTS (just meds for other medical problems that work for various symptoms, etc). Is it a requirement by LTD standards that you have to have tried those various meds that could potentially help a symptom or two or do you just have to have followed what your doc recommends? I'm in Canada, but my limited knowlege so far is that the process seems similar to US, so I'd be curious to know how it's worked in other places as well. The only thing so far that my internist mentioned was trying a beta, but he didn't recommend it based on my low bp and brady. I agreed and I'm hesitant to experiment alot right now given that none of the docs I see have experience with POTS or autonomic testing facilities. I am traveling to see an EP/cardiologist soon, so she may recommend something, based on her knowledge and experience. But, in the event that she doesn't have a wonder drug in her top drawer, I'm trying to prepare for the next step... Thanks

I experienced that too. What is that about????

I love music, but unfortunately for those around me I've always been a terrible singer. I miss driving because that was when I would sing at the top of my lungs and no one would have to hear it When I first got sick, I was in really rough shape and I could not handle anything even remotely negative, so my son and I settled on America's Funniest Home Videos to watch together (laughter is the best medicine...right???). I actually thought that I would die when I attempted to laugh - I had severe chest pain and SOB. I had to turn it off. Thankfully, I don't have that extreme of a reaction now.

They found a lung nodule in my lung as well when I was hospitalized last Dec. I had a repeat CT scan with contrast in Feb. It hadn't grown in that 2 mo span of time so I am scheduled for a follow up in a year. I had a lung CT 5 years ago and it wasn't there then. Interesting...

Bananas...that's great !!! 10 mins on the recumbant bike...I know you worked hard to get there. Good for you Are you noticing a difference in your energy levels?

Hopefully it was a monitor error. I know that a hr of 40 feels horrible for me, so I can't even imagine what 19 would feel like. I have resting hr's in the 50's too, but if I'm not symptomatic, I try not to be concerned. Once it hits the low 50's I keep a pretty close eye on it, though. From the Holter, I know that my hr goes into the low 40's while sleeping. The docs seem quite comfortable with that. I hate it when it's that low if I'm up though. I think the lower hr's would be easier to handle if it weren't for the extremes (brady, tachy, PVC, SVT). I think you should definitely mention it to your docs, especially if it is a change from before.