AllAboutPeace

Thanks for finding and posting this, Naomi !! Great info!! I'm really curious about the autoimmune connections being made. Can't wait for more info about this... 1. Autoimmune basis for postural tachycardia syndrome (POTS) D.C. Kem, H. Li, X. Yu, L.E. Okamoto, S.R. Raj Oklahoma University Health Sciences Center and VAMC, Oklahoma City, OK, USA and Vanderbilt University and VAMC, Nashville, TN, USA

Welcome to the forum I'm sure you will find lots of helpful information here! It sounds like you've been through a lot to this point!! This is a link to a fairly detailed overview of NCS that someone else posted awhile back. http://livingwithncs.wordpress.com/2011/05/13/what-is-ncs-the-who-what-why-where-when-and-hows/ Some of the info on the web about it does make it seem like its a no-big-deal condition, but that certainly hasn't been my experience either!

Justin, I have Pots/NCS and most of the symptoms you described with the exception of heat intolerance (my issues are more with cold core temps and trying to stay warm). My issues began 2 yrs ago (officially in 2 days time :/ ) Exercise intolerance is a huge problem for me as well because of blood pressure drops, extreme fatigue, etc, etc. I've tried different things - got a recumbent bike, regular stationary bike, rowing machine, but they have rendered themselves pretty much useless at this point. Like you, the progress was very slow and regressive with crashes. At this point I've discovered that short walks are the best thing for me right now. I can do 15-20 min walks throughout the day (later in the day is better). These walks are at a continuous steady pace - no standing around or I run into trouble. It actually feels like it's the only time that I get enough blood in my head! It seems to be the only level of exercise that I can manage without crashing. Have you tried or are you currently on any meds? I had the same issue with my blood pressure not coming back up after passing out and needing 1 bag 1/2 or 2 bags of saline to boost me back up. I didn't try any meds for the first 9 months because I hated to take medications and endure potential side effects, especially if it wasn't going to 'fix' me. Finally though, after noticing the clues that I might have low blood volume (based partly on the fact that IV saline helped me), I tried Florinef. It has definitely been helpful for me and in the fifth week of taking it, it gave me back the ability to drive (which was huge for my independence) and more functional in general. This past summer I took a break from it, for an unsuccessful trial on Midodrine, but I'm back on Florinef now. Essentially that break gave me more proof as to how much it is helping me. Of course, meds are different for everyone, just wanted to let you know what's helped me. Another thing that I find helpful is wearing abdominal compression. It is easy to put on, not expensive, reasonable well hidden and has no side effects! Here is an excerpt about its effectiveness: In a laboratory experiment, Smit et al17 found that an elastic abdominal binder that exerted 15 to 20 mm Hg of pressure on the abdomen raised the standing blood pressure by about 11/6 mmHg, which was comparable to the effect of a gravity suit (such as those worn by fighter pilots to prevent syncope during violent aircraft maneuvers) inflated to 20 mm Hg—an increase of about 17/8 mm Hg. Higher gravity-suit pressures had a greater effect. In practical terms, the binder should be tight enough to exert gentle pressure. It should be put on before rising from bed in the morning and taken off when lying supine, to avoid supine hypertension. Advantages are that a binder’s effects are immediate, its benefits can be easily assessed, and it can be used on an as-needed basis by patients who need it only during periods of prolonged orthostatic stress. Binders are also easy to fit and are available in most sporting good stores and on the Web (try searching for “abdominal binder”). The full article is here http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2888469/ . I hope Dr Grubb will have some good tips for you! Please share if he does

Count me in, too, as someone who feels better on antibiotics! I found this older discussion about it with some interesting thoughts... http://forums.dinet.org/index.php?/topic/15435-antibiotics-make-me-feel-better/page-3?hl=antibiotics

Sue, I think maybe we have talked about this before, but when you describe this I can't believe how similar it is to my experience. Has there ever been a poll or anything on that specific pattern you describe to find out how common this is among us? A few nights ago I was up at 2am then again at 4, so I've recently experienced the difference between the two times. At 2, I was potsy-normal (tachy), and lay awake for at least half an hour; but at 4, it was just like a walking coma. I was very weak and felt like I was going to just drop at any second. It's very different from a presyncope/syncope feeling. My heart doesn't race at this time though, it stays in a slowed, sluggish state despite the fact that I had to go outside (with the puppy). It seems that my body has zero ability to adapt (to wakefulness) during those times. All I could do was get back to bed ASAP and, like you, it's immediate sleep (maybe because our bodies havent really woken up?) I soo wish we could get someone to study this and figure it out - I miss mornings with my son before school (my husband gets up with him). I could force myself up in a comatose state, but then I'm less functional all day. Janet, Yes, I agree, it is great to find something helpful that has no side effects! I do have compression stockings, but I've never found them as helpful as the ab binder. I feel like I've expended my whole days energy just getting into the stockings . They do help me stand for a few minutes longer, but I find them really uncomfortable for sitting and it just doesn't seem worth the effort, in my case. Do you wear the stockings, as well as the binder?

I'm definitely curious about this, but haven't had it done. This article provides some interesting things to think about... http://www.forbes.com/sites/stevenkotler/2012/12/13/what-is-23andme-really-selling-the-moral-quandary-at-the-center-of-the-personalized-genomics-revolution/

Ha ha It is a lot cheaper and easier to pull a bottle from the recycling than to get out to buy a toy! I do try to find something quieter on my bad headache days. Hmmm, that's interesting! Thanks! I might try that too. I had no idea that I even had abdominal pooling (I have bad pooling in hands and legs/feet) so it took me by surprise how helpful the binder is. It makes sitting much more comfortable - I always sit with my feet up, but still had to switch positions quite a bit to keep orthostatic symptoms at bay. I should have tried it a loooong time ago. Kara, I got my abdominal binder at my local pharmacy (with a home health care section), but I know that people have posted links on here in the past with recommendations and places you can buy them online. If you do a forum search of abdominal binders you should find some links. (Let me know if you don't find any and I'll help you look) My husband ended up getting mine and he guesstimated size based loosely on sizing on the box. It gives waist sizes. I could have probably used the next size down from what he got, but I can still use it because there is a wide overlap of Velcro. More accurate sizing would be necessary if you wanted it to look as smooth as possible under form fitting clothing. Kayjay, I've had v8's before because I know it's good for me (not because I like the taste ), but the thoughts of drinking one first think in the morning makes me feel ill! Does your body handle that well?? In hindsight though, I never would have guessed that I could handle chugging salt and water either...so, maybe...

Kara, I soo wish I had great tips to share! Dexter looks like such a sweet dog!! Mornings are such a struggle for me too. I need a huge glass of water and to be awake for at least an hour before I'm ready to function upright and even then it's at a sloth-like pace until I have breakfast and my morning coffee (EP prescribed). My puppy wakes up ready to hit full speed, too! There have been times when I've had to tie him to my wrist when I take him out for a pee because I feel soo presyncope and I'm afraid he'll get loose, if I pass out. I hope your parents are able to help you out with the puppy, especially in the mornings. I usually give the puppy a 'morning only' toy or a plastic bottle to crunch up just to buy me some time. Re: your question about shorter sleeps vs longer ones. For me it makes no difference at all. Although if I've had a bad night with not much sleep my body feels more ready to get up in the morning, but then I'm a write off for the rest of the day... Janet, you just gave me an idea about compression garments. Recently (and finally), I've started using an abdominal binder and I find it helpful, but I don't usually put it on until I get out of bed. I wonder if it would speed the process up if I put it on as soon as I wake up/ still laying in bed ??

Cala, I burst out laughing when I read this ...then I realized that I actually feel ALOT like SpongeBob...sure, I may not LOOK like him to other people, (hopefully, at least) But, ya...all spongy and waterlogged. And while my pants aren't exactly square, they don't fit the way they used to, for sure ...plus, the water pressure from under the sea would help with blood pooling...

That's brutal, Sue! Your strategy makes sense though - might as well get more in if you have to feel terrible anyway. Are you able to boost your levels at all with sunshine? My docs won't check Vit D levels and just say everyone needs to supplement. I think now that I have some calcium questions, I will push for D levels to be checked.

Sue, I'm attaching this link to a post about " prescription strength Vit D" - partly because I thought there may be something helpful or informative for you and partly because I really couldn't remember exactly how it affected me until I looked up this post (Pots brain!) My Sister-in-law/nutritionist did say that I should try another brand in case it was a 'filler' that I was reacting too, but I've just haven't felt like experimenting again...yet. As long as I can get in the sun, I'm doing that, but later in the fall/winter is the time I'll have to try again with a different brand. I was only on a small dose compared to Rx strength. Are you able to tolerate a smaller amount at all? http://forums.dinet.org/index.php?/topic/22720-prescription-strength-vitamin-d/page-2?hl=%20vitamin%20%20d%20%20lmg

Thank you so much everyone for your helpful tips and stories I saw my dentist this morning (and had a cleaning...Owww!...still sore) The dentist said that he has no idea what's going on. He did the air-on-the-teeth test to find out where it's sensitive and he could see that it is everywhere which gives him nothing to work with. He said he'd have to work on or remove a minimum of seven teeth to start with and he's not about to do that at this point! He can't say if its irreversible or a temporary problem without knowing more. He said normally they'd look at teeth grinding at night, however, I don't fit the profile for that (no jaw issues/obvious stressor/signs of it)so he doesn't think that's the problem. He said my teeth are definitely 'hyper-sensitive' and that the brittle-ness goes along with that. They applied a desensitizer today and gave me more desensitizing toothpaste (which I was already using) and wants me to try that for a week or two. He said it could be an issue with the nerves themselves. Re: dry mouth. I don't feel like I have dry mouth at all. I do drink water all day and feel thirsty, but have never noticed my mouth being dry. The dentist also said that there are no cavities or decay which can be related to dryness. I don't fit the profile for EDS, either. Re: Florinef I found this on Rxlist.com: "Fludrocortisone makes your body hold on to salt (sodium) and get rid of other salts (e.g., calcium, potassium). Follow your doctor's advice on how much salt, potassium, and calcium should be in your diet." And this on drugs.com: "Periodic checking of serum electrolyte levels is advisable during prolonged therapy; dietary salt restriction and potassium supplementation may be necessary. All corticosteroids increase calcium excretion." I definitely don't want to try to falsely pin it on Florinef, as it may be coincidental, but the timing of it seems to go along with when the Florinef benefits kicked in for me - about 7-8 weeks after restarting the med. I know that low blood calcium will cause the body to steal calcium from bones, but I wasn't sure about teeth. The dentist said they shouldn't lose calcium, but it could possibly have an effect on the bones around the teeth. Either way, it's probably a good idea to have some bloodwork done. Calcium's a tough one because you can't absorb it without Vit D and I tried Vit D supplementation and didnt tolerate it...

Over the past several weeks, I've noticed that my teeth seem really brittle. I eat almonds and seeds and it feels like my teeth are going to snap off...yikes!! This is a sudden change because I've been eating them all along. Also, they are suddenly extremely sensitive to everything - even lukewarm water if I swish it around. I've always taken really good care of my teeth, but brushing now isnt a pleasant experience with all of the sensitivity. I'm taking Florinef .125/day and I'm wondering if this has something to do with calcium loss from that(???). Anyone else have this issue come up suddenly? Any ideas? I'm tempted to grab some tools from the workshop and start pulling...you'll never see a profile pic of me up there if i do that...lol.

Hi frogs I think that for some us it does seem to be part of our mixed up autonomic nervous system. My resting heart rate has dropped lower (averages around 48-52) since Pots and at times it drops into the low 40's. That is also without any medications that would lower it. My internist is unconcerned about my resting rates and says that some people just tend to have lower heart rates. I do plan to discuss it with my EP/cardiologist when I see her next, just to make sure she is of the same opinion. I think it's worth discussing with your doc, since he/she knows your medical situation. Are you having symptoms when your heart rate goes that low? I feel awful (weak, lethargic, hard to even hold my head up) when my heart rate is that low. It might be helpful for you to keep track of that info, (what you were doing at the time, how you felt, what the rates were, how long did it last, etc) if you aren't already, to show to your doc. Sorry you are experiencing this - I know it can be scary.

Hanice, I have had this issue since my sudden onset of Pots - for me it goes along with the dysautonomia. Prior to Pots, I could miss meals and carry on with no issues at all - now I have to eat every couple of hours (as you mentioned not because of hunger, but because of symptoms). I've never noticed if I have more extreme tachycardia, but I tend to get really weak/lethargic when I have to fast. The docs checked my blood sugars while I was hospitalized but the numbers didn't indicate a problem. Heavier meals make me more symptomatic as well. So, I just listen to my body and try to give it what it needs. I have small meals/snacks throughout the day and pack snacks (along with salt and water) if I'm leaving the house. Ahh, the joys of being a suddenly-super-high-maintenance-gal I think what MomtoGiuliana's doc said seems to apply in my case. I know 'something' is going on, but as with many issues with pots, it's tough to pin down exactly what that is. I hope it all checks out for you, so you are not worrying!

I'm glad to hear that you got along well with the test It's interesting that you mentioned the alternative to exercise. When I had the test, a woman who had the injection (instead of treadmill) was chatting with one of the techs and describing in detail, how the injection made her body react. The tech said he tells people they will feel horrible but it will only last a few minutes. I was listening to her thinking 'oh wow, she was describing how I feel with Pots !!' ...and oh how I wished POTS would be over in a few minutes... Definitely a good point for us to be aware of it being a vasodilator!

I love that!!! Made me laugh...thanks

Hi LMG, I was concerned about the radioactive stuff too, but had no reaction to it at all. {odd actually given that we can react to ordinary things, but radioactives are ok... } The only issue I had with the test is that while I was sitting waiting for the second scan (post stress test/treadmill), my BP dropped suddenly so I had to lay down. The techs gave me water and googled 'Pots' because even though I said I'd be fine, they were a little freaked out. My post exercise scan ended up being delayed and since I had water in between, I'm not sure if that would have affected the quality of the test. I think it's a test that could provide some good information though. I'll be thinking of you tomorrow and hope it all goes well!

I was thinking along the same lines as Kayjay. I'm not diagnosed hyper, but my symptoms were very much hyper in presentation in the beginning with tons of surges, etc. I have had the same thing you describe and I do believe, at least in my case that its due to dropping BP. It often happens when I'm feeling extra fatigued/symptomatic going to sleep (along with my typical low hr and BP). I have BP drops and had one a few weeks ago after cooking and being in the kitchen for a long time. Luckily (and perhaps oddly) it will happen once i sit down and stop moving. As I was having dinner I felt the internal tremor starting along with the weakness and fatigue. It feels like you're shaking so much that others should be able to see it, but they couldn't when I held my hand out. I would normally head for the couch or floor at this point, but really didn't have the energy to move, so I picked up my fork lightly and it started bouncing around - even though my hand appeared quite stable. My son thought it was a little freaky, but for me it was confirmation that 'ya, something IS definitely going on here'.

Midodrine didn't work for me either. I just read through this article that was posted on another thread (thanks Alex!) and it states that "Vasoconstrictors such as Midodrine are ineffective when plasma volumes are reduced" http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2888469/ I wonder if that is part of the problem for some of us?

Alex, Yes I had the regular arm cuff monitoring. The beat by beat measurement would have been MUCH better! My BP was only monitored every few minutes and if it wasn't for me grabbing my docs arm and telling her how awful I felt at that moment, she might not have gotten a measure just before I passed out. She triggered it manually then. I'd be curious to know which method is used at other places too. *just before my tilt the nurse was going to start me on a saline drip. As she was hooking it up, I said "oh, no...don't do that!!". Lol She had no idea that it might affect the outcome. Obviously, I didn't have it done at an autonomic centre...

Alex, I really hope this makes a difference for you! I'll look forward to your updates Peace

Here is a link illustrating proper blood pressure measurement for both standing and sitting. It states that a systolic pressure taken on an unsupported arm (arm at side) while standing can erroneously be 6-10 mm Hg higher than in an arm that is properly supported. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2911816/#!po=40.9091 When my docs do the poor mans tilt they support my arm, but, like you Liz, during my TTT my arm was at my side. Odd...it would certainly make sense to standardize it (!?!) If you are having wide swings in BP, they should show up either way though.

Hanice, Sorry you are feeling so awful! I definitely feel worse when I take in too much salt and could never deal with the high amounts of salt the docs say to take in. How much did you have? I'm also wondering about potassium (as MomtoG mentioned), there is a specific ratio of salt/water/potassium in your body and if those ratios are out of whack, you can feel pretty crummy until it balances out again. I also make sure to have potassium rich foods everyday- even a banana helps. Like all-things-Pots, you just need to find the right balance for you

Emma, I'm glad that you stood your ground and refused to leave! It's soo frustrating and disappointing that it has to come to that. Hopefully this new information will help them to treat you. I remember reading about your struggles with more extreme heart related symptoms. I only had one episode that by description the docs thought might be a-fib and it was absolutely terrifying. It felt like my heart wasn't pumping at all, but was completely out of control. My monitor couldn't read it at all. I was afraid to move suddenly because as much as I wanted it to stop, it felt like stopping it abruptly could be dangerous. It was unlike any other rhythm issues I've had. I hope you are recovering today and will be able to get help as soon as you can.