hollie

LOL!!! NO ONE is as advanced as me!!! (NOT!!)

You know, every time I have issues (good or bad), I debate for about a day weather or not to post them here. EVERY single time I do, I feel SO much better! I either feel redeemed or at the very least get a laugh!!

I would LOVE to do that, but I don't think I would have the guts!

That's the sad thing... I've heard so much praise for this place and the docs. I don't need to be treated like a queen, but I would like some respect. I would at least like a few questions answered instead of being brushed off. The person I talk to on the phone is so nice and helpful. But then when I get there, no one at the front desk (in that department) knew anything, the techs were so impersonal (except one out of 5), and the doc acted like he didn't have time for me. I'm just tired of being the "2nd rate sick" as I call it. No one believes you... no one listens to you... no one cares that you can't even play with your kids without sitting down, or go to work, or even clean your house. BOOOOO WOOOOO... I know I sound like a big baby... sorry... like I said major set back in that department today!

Midodrine does the same thing to me. I was on 2 - 5mg spread out throughout the day, but it wasn't quite enough. Then my doc upped it to 3 a day. But this was way to much. I jumped from 100-110/65-70 on 2 up to as high as 165/110 on 3. He told me now to do two and a half. I've only been doing it for about a week, so too early to tell, but it has leveled out a little. It seems Like the littlest thing can throw my whole system off! It stinks!!! It's all a balancing act!

Talk to your doc, take slow steps when changing doses. Who knows, your cold may have even thrown you off.

Hi all... I hate long posts, but have to vent!

I'm part of a POTS study at a major research hospital. I go once a year & do the TTT, Valsalva, QSART and a few other tests. This is only the second time doing the tests. I've been seeing a cardio doc the last 8 months because the first 4 months after my dx, the docs at this hospital treated me like I was an idiot. They told me to drink lots of water (I know), eat salt (I know), gave me a px for florenef and pushed me out the door. He didn't even seem concerned that my HR or BP was all over the board. He gave me some tips too (not one of which has worked in the last year - I've learned more on this site than I did with numerous meetings with these docs there)!

I'm going in to do them the favor for these tests, not the other way around. I figure If I can help the next patient that comes in here with POTS, then it's worth it. I went in with a good attitude. I tried to forget about how I was treated last year and was actually looking forward to seeing how I was really doing with this because I haven't even been able to go back to work and needed some advice/help getting back to a half-way normal life.

First of all, they put a IV in so they can draw blood during the TTT. I've been stuck with needles literally hundreds of times and they never bother me (no... I'm not a druggy... LOL... between two problamatic pregnancies, giving blood, and all the tests since this all started). I've NEVER had an issue with them getting the needle in. It took three tries before it worked (it bent in my vein the first two times!). I was bleeding all over, it only hurt a little and didn't really bother me. But then I started getting POTSY. The tech felt really bad and told me when messing with veins, the nervous system will be triggered (ANS included). They performed the tests, taking about 2 hours. The doc then came in and asked me about 25 questions - right after all the tests when I'm "not all there" anyway. He wouldn't even listen to my answers. I was still laying on the table, half alive. I had a couple questions for the doc and he just brushed them off. He acted like I was waisting his time. He asked me why i was taking the BB I am and why so much. He told me to cut back to half. I told him I had been taking only half up till about a month ago and my HR was still jumping up a hundred points just walking around the house! He responded with, "OH, then you've been watching that then?" I wanted to smack him! Of course I've been watching that! I can't go up a flight of stairs without stopping (or at least going REALLY slow!) because my heart was pounding so fast and I can't breathe! I wanted to ask, "Who are you to tell me what drugs I need and how I feel? You've only been talking to me for 3 minutes and you haven't even had time to go through my test results!!" They treated me like I knew absolutely nothing about this disorder. I probably know more than a lot other POTS patients out there. I constantly am looking for more info. I've even read three studies that this doc has performed & writen himself!!

I also have a blood clotting condition. It makes me more prone to clotting and such. I've been told by one doc AT this hospital, my PCP, and my cardio doc I'm seeing that I can up my salt intake, but don't go too crazy. The doc yesterday pretty much was mad at me for not upping my salt intake more than I had in the last year. I told him about my condition and he responded, "I've never heard of such a thing... there is no reason you can't up your salt even more!" Well, excuse me! I would rather feel light headed and icky every day than have a clot go to my lungs, or heart, or brain! I guess the 3 other docs and all the research I've read was all wrong! WHAT? He told me to drink MORE water than I am... It's still not enough - OK, but I'm already drinking an average of 140 oz a day, how much more can I drink?

He then went on to tell me about another study they are going to start up soon. He said I would be a perfect candidate for it. It's a three month (or maybe more) study that I would have to go down almost every day for. I wanted to say "Are you kidding? You treat me like dirt and you want me to come back for more of your abuse... every day!" I felt like that was all he wanted out of me! I felt like a useless little lab rat to them, used and thrown to the side when they're done with me!! What ever happend to tact, to personal attention, heck... to politeness?!?!?

I've been resently trying to look on the bright side of everything, otherwise I get so down. This set me way back yesterday. I thought I would go in and feel validated and get some aswers. Instead I got treated like an idiot and pushed aside. Sad thing is I'll go back next year... I know I will. Good thing is, I know not to expect a thing! I'll just go knowing that's all they want me for... to be a lab rat! Like I said... Maybe it will help someone else (maybe even me in a couple years).

Thanks for listening!! I feel better now... you guys are the only people that will listen to me vent (other than my husband and my mom and I know they get tired of it).

Hollie

I get this ALL the time!!! Mostly on my head and back also when someone touches me anywhere (just like you said). It's SO strange!!

At the time of both my kids' deliveries I was not dx with POTS yet, but was already having symptoms. I had epidurals with both and wouldn't have done it any other way! No problems... no side effects... I DID get out of bed too early after delivery with one of them so I could take a shower (I had my parents and in-laws coming). I took a shower and ended up sitting down in the shower and calling my husband in there to get me out. He said I was as white as a ghost. I don't think it was the epi... I think it was the combo of me pushing myself and the heat of the shower.

Good luck! It's a great experience! Just take it easy & listen to your body!

I sit in the shower too... I do ok... not great. What I have a hard time with is once I get out of the shower, dry off, get dressed, etc... Then I need to blow dry my hair. I already feel "iffy" at best and have to put my arms up (bad) and add more heat (more bad). By the time I'm done, I'm toast! So, most days, I don't even do my hair. HEY GOOD LOOKIN'!

I'm on 15 mg spread throughout the day. I too have to keep an eye on my BP. Rob, you should ask about a bata blocker to help with the heart rate. I'm on one to lower and control my heart rate. It will also lower your BP, so that's why so much midodrine for me. It seems to regulate me most days. I still am working on dosage, so not quite where I want to be, but getting there.

I just got back from the dr and he put me on an small dose of paxil. I'll start it today, but it will take some time to kick in. I'll keep you posted!

...if anybody has any advice please offer, as having a "real" problem verses an "all in my head problem learn to calm down or ignore it",is all new to me. Suzy

Hi Suzy,

I'm sorry to hear you have had such a rough time. That seems to be a theme around here! My advice... Take one day at a time (sometimes even one hour at a time). Keep coming to this site too. I've only been here for about a year, but it makes me feel better when I need a pick-me-up, information, some advice and even a shoulder to cry on. Find a dr that you like (and trust). If you get a bad vibe... find a better one - don't settle. This is your life and your health. If you don't fight for it, who will? You know how you feel, you know what's real. Rest when you need to, laugh when you need to, cry when you need to! This is not an easy journey, but you'll get through. (you know... the funny thing... I'm havng a rough day today and came here for a pick-me-up. I'm reading my own words to and now I have to take my own advice!)

Don't be afraid to ask or share here... We're all on the same boat!

I hate to get in the middle of this, but... My guess is that your daughter, gfish, MAY have been misdiagnosed last May. There are a TON of disorders out there that present themselves as dysautonomia. I could name at least a dozen off hand, and I have no medical training. Sometimes docs just put a name on it just to have an answer, to have something to go with. I'm know there are many on this site throughout the years that have been misdiagnosed and I've only been here not even a year. I know some are diagnosed for years with POTS or ANS that eventually discover it was something much simpler than that. I've learned SO much through this site, med shows, the internet, and lots of other places. For me, there are SO many more symptoms than what you had listed. (maybe you didn't list them all...not sure) I'm not trying to question chiro work. I've had work done on myself also and it did help with some symptoms, but was not a cure. Maybe she had some kind of pinched nerve or something because of the misallignment causing dizzyness, headaches, racing heart. It would be something to look into, but probably is not a "cure" for all ANS patients.

Thanks everyone for your thoughts! It has made me feel better! I'm glad I'm not alone! I was begining to question if it IS all in my head. I know it's not, but when my whole body has fallen apart in the last month (more than ever), I begin to wonder if I'm crazy!! I begin to wonder if it will ever get better!! I'm actually in a study at Mayo that tracks POTS patients throughout a few years. My one year "testing" is coming up in about a month and I can't wait! I know that sounds stupid! I have to do a TTT, a sweat test and a handful (or more) of other tests. It kills me for about 3 days, but it will give me a sence of where I am with this whole thing. The dr I'm seeing is great with heart stuff and he's been more helpful than any other I've seen, but I haven't really had any testing done for a year. And since I've been getting worse, not better, I think I need to change something - I'm just not sure what or how!!

I'm sure you all have been in the same boat at one time or another. I'm just SO thankful for this site and all of you in it! It has gotten me through some rough times, and I have been blessed to help some of you too!! I had a really rough day yesterday and waking up to some kind words is just what I needed!!

THANK YOU!!!

I know there are other posts about this... I've looked. But I'm not getting the answers I'm really looking for. I guess... I'm not really sure what I'm looking for. I guess, more than anything, some reassurance that it's not just me being a complete witch... that there is an explanation behind it. I guess I just need to rant a little too...

I've been having EXTREME irritability when I'm having really bad POTS symptoms (which is about 15-20 times a day). It's been getting worse and worse. Now, I snap at the drop of a hat. I see myself yelling almost nonstop at my girls and I HATE myself for it! My mom even said to me today, "I've seen you say things to your kids that I NEVER would have thought you would EVER say to them. I've seen you yell at them like I never thought you would either." I've tried to catch myself, to calm myself, etc. But most of the time, I snap before I even realize I'm doing it.

I'm on a couple meds that the side effects are irritability, but should it be this bad? Should my kids and husband suffer? I don't think so. I would rather feel physically bad than emotionally bad! I would rather lay in bed, unable to do anything, but be nice than be halfway functional but be a complete witch!!

I'm not sure if it's me... if it's the drugs... if it's the POTS.... if it's hormonal imbalance... a hundred other possabilities... AAAHHH!!

Anyone else go throught this? I'm seeing my dr next week and I'm going to address it with him. I just am wanting to know if I'm alone on this. I'm not talking about being a little crabby... I'm talkng Incredable Hulk!!

Jump,

I have the exact same issues as you... Higher BP on standing, but tachy. My dr put me on a BB - which helped the tachy problems but made me more "drunk feeling" when I stand. He continued the BB but also added Midodrine. He said that sometimes controllng the heart rate with BB will lower your BP also, even when it didn't before. We're still tryng to balance them to even it out.

Hope that helps.

Hollie, it's driving me mad. What is on your little picture?

I'm not sure what it is. I just saw it in the gallery and liked the colors. ???

Over the last week of getting together with friends and family I don't know how many stupid comments I heard. I'm to the point if I don't laugh at the comments, I'll cry... So I've decided to laugh! Here's some of the things I had people say. Please add stupid comments you've heard recently... just for laughs...

My grandma said after hearing that my meds had to be changed yet again... "This thing might be with you for a while then!?!" She knows I've been struggling for years already. All I could respond with is that I will be living with it for the rest of my life!

After telling my uncle that my heart rate goes up to the 160's after climbing 1 flight of stairs he said, "That's not very high!" WHAT??

After stopping halfway up the stairs (out of breath, almost passing out - I'm sure white as a ghost) my friend said, "What's the matter? Did you forget something downstairs?"

Shopping with my sister, she walks like she's in a race (I can't keep up with her). She said, "I can't shop with you if you're going to walk so slow. I'll get nothing done!" I turned to her and said, "Well, I can't shop with you if you're going to walk so fast! I'll pass out!"

My 4 & 6 year old are the most understanding. My 4 year old saw me having a hard time and said, "Mommy, I know you're not feeling well. You should rest!" CUTE!!

I've been having pain underneath my sternum for quite a while. It's almost like a charlie-horse feeling. It lasts for a few seconds to a few minutes. It's beoming more and more frequent. It's too low to be my heart. Anyone else have this? Anyone know what causes it or what it is?

My BEST FRIEND had the same remarks to me a few months back. I haven't seen much of her since. She knows all about POTS and what it does to me, and still said, "I'm not the pitying type!" when I was having a really rough day one day. My point is, whether people know and understand it or not, they are still not going to "get it". No one really does unless they live this way. I say ignore her! You can't change her no more than I can change my "friend". Some people are just insensitive no matter what. This is your life - you and only you know how you feel every day. So do what you can, that's all you can ask for!!

I maybe would have had my kids earlier in life (not that it was so late - 24 yrs old at the 1st one, 26 at 2nd) and had more of them before I hit rock bottom. Now, it would be WAY too hard on me. I always wanted 4, but now am happy that I could even have the two I do.

WELL SAID!!!

- I don't have to prove myself or my illness to anyone!

I too have lost my closest group of friends in the last three or four months - even though they will never admit they are truely not my friends anymore. I've tried so hard to show them and prove to them that this thing is real and I fight with it every day! But every time I have tried, they don't really hear me anyway. I gave up on trying when I had a big blowout with one friend in particular. I considered her my best friend, now we barely talk. I was having a REALLY rough day and crying and she came in the room where I was by myself. I wasn't even going to talk about it, but she kept asking. I just said it sucked and I was sick of it all (that's it - no more). She said (and I quote) "Well, I'm not the pittying type." Excuse me? Did I ask for her pitty - no!!! I responded, "I'm not looking for pitty, I'm looking for understanding! I'm looking for a friend! This NEVER goes away and you all act like it should. I can't do everything you expect me to be able to do" I haven't brought up the conversation or POTS since - to anyone outside my family. I figure it's a loosing battle anyway.

I really don't complain that much... never have. Just when I'm having a REALLY off day. I'm coming to terms with it slowly. I still have pitty parties for myself from time to time, but who wouldn't?!?! I can't do half of what I could a couple years ago, but more importantly... life goes on. If I loose my friends, it's just one more symptom on a list of many! It *****... just like the rest of the symptoms!!

The important thing... I know how I feel. I know it's real and there every stinkin' day! My husband, kids, parents, sister... all know it's real and are standing by me. I'm lucky for that much! I've actually met a couple new friends lately. They know me this way, not the old way. So, at least so far, they have accepted me for what I am and the disease that I have.

We are all thinking of you and feeling your pain! I'm not in alcoholcs annonomus, but they have a great saying which I'm sure you've heard. I like the first bit best... Give me strength to accept the things I can not change... Maybe this is a bad way to look at things, but if I look at it any other way, I get mad, lonely, and depressed. I can't live like that! And yeah, I say this today and a week from now (or a month or year) I'll probably be feeling sorry for myself yet again and try to win my old friends back because I'm lonely. That's when I'll turn to me dinet friends to lift my spirits. That's why I love this forum so much!! Who really needs friends like that anyway? I would rather have one or two REALLY understanding, loyal friends than a roomfull of poeple that call themselves my friends, but who would ditch me at the first sign of trouble.

Keep your head high... don't let them get you down! We are here for you and understand, even when no one else does!

Hollie

Thanks for starting that Sarah!!! Maybe it will help me get some of my friends to learn more about it. I have a link to Pots Place on my homepage, but this way I can actually ask them to look at it and join!

Thanks again!!

Hollie

I'm in the same boat... almost exactly. I've been under control with meds for about 3 1/2 months. The last 3 or so weeks have been bad again and I too cannot figure out why. I just keep hoping it will pass. I am pretty new to this too, so it's very frustrating! Hang in there... I'm with you!

Hollie

That makes sence. How do I go about trying to figure out the cause? I've done a little research, but am unable to determine anything on my own. I'm affraid that my docs wouldn't really care to help me find out either. Any good sites out there to help???

Hollie