denabob

There is alot of useful info out there on the subject. One of the best is the doctors mind experiment I found that someone listed in another post (cant remember who or where now )go to http://home.att.net/~potsweb/mindexperiment.html (I think that's it I have brain fog BIG today ) Take it to your school and let the teachers read it maybe they will be a little more understanding! What angers me about that is if you had asthma or diabetes they wouldn't expect you to "push your body through" to make it on time POTS is treated as if it is only in our heads and it isnt!!! I tell people if I could fake heartrate and BP then I could be rich teaching people to pass lie detectors! I applaud you for doing the gym class in the first place.........I cant imagine how hard it must be to be a teen with POTS! I was diagnosed at 29 What did your parents do about this mess? As a mom I can say I wouldn't be pleased! I see your point about it only being lunch... how rediculous!! I'm surprised you make it through the rest of the day, if all you are is a few minutes late to eat they should be thrilled! If you were trying to take "advantage of the situation " you'd insist on going home. Yay to you for being strong!! Good Luck and dont let others' ignorance set you back!! Deanna

I'm glad to see that you're doing a little better! I try to put myself into the shoes of our "significant others"( I'm not married but have a great guy) I cant imagine how frustrating it would be to watch him suffer through our symptoms and not be able to help him! I'm sure it would wear on us after a while. We also met later in life (after POTS) and he loves me just the way I am. He says everything that happens in our lives makes us who we are at this moment and I guess you have to look at it that way. You may wish he new you when you were 22 but were you the same person then? I'm not! I like me better now in spite of my physical problems. It is my personality type too ,I worry and get insecure especially when I'm ill!!! My boyfriend told me to not worry about what he can handle or what he should feel or think that it is his job to do that! Whoever said to just ask them to say what we need to hear is a genius! Men are definitely NOT good mind readers. Bless their hearts they try! Usually you do get what you asked for and some extra because then they realize what we need. I'm done rambling now. hugs! Deanna

D Good for you!!! Every bit of good news is appreciated ................the little things make life more enjoyable and since POTS we tend to not take ANYTHING for granted!! Good Luck Deanna

I'm really sorry about your day and I can fully understand your point of view!!I dont know what to say about your husband because I dont know him but I do know that men have a hard time dealing with things that they cant fix! They think that if you are "blowing off steam" that you expect them to do something about it. I turn to my best girl-friend and she is honest enough to let me vent without letting me whine and there is a fine line! She tells me when I start feeling "sorry for myself" that she'll ground me and we talk at least three times a day if I'm grounded she wont answer the phone (From my friend Lisa )- This is my stress management technique recommended in all the latest physcological texts : The funny thing is that it really works 1. picture yourself near a stream. 2. birds are softly chirping in the cool mountain air. 3. no-one but you knows your secret place. 4. you are in total seclussion from the hectic place called the world! 5.The soothing sound of a gentle waterfall fills the air with a cascade of serenity. 6. the water is crystal clear 7. you can easily make out the face of the person you are holding under water See.......................you are smiling already!! See why I turn to her? she's a nut!! I hope you feel better soon!! Deanna

Read the inserts to your meds some have a side effect of light sensitivity. With me it hasn't changed much. I lay in the tanning bed and if I take proamitine I have to be careful or I'll burn! Sorry I'm not much help, Deanna

I think most of the problem with that is that we have questioned ourselves for so long due to "clear" tests that we (I now me personally) ask MYSELF if I'm overreacting or even imagining things!! To be looked at by numerours Doctors and have them say "I cant find anything wrong" makes me doubt myself. I'm so thankful for this forum because at least I know I'm not the only crazy one hehehe I try to ignore their attitude and just hope that they never end up on the other side of the coin! I also avoid any Doctor other than my endo. I call him when I get real bad but sometimes we cant avoid it we just have to instruct them on how to care for us- Nice them to death it works!! It's hard to be heartless to someone when they are being sweet to you !

I agree with Jackie.....I see POTS as one of the many branches off the dysautonomia tree!! When our autonomic system fails they stick a label on us depending on which part of the body is affected but I suppose it is possible for it to continue to break down in different ways along the way. Mornings are awful!! my daughters both are not morning people either so my house is always tons of fun in the morning before school!!

1. I myself am a light sleeper 2. I dont get much "rest" from sleep either 3. my numbness is usually in my hands and feet 4. Absolutely!!! split-second change 5. That's called "brain-fog" it is a real medical symptom- dont feel bad 6. eye sensitivity is a common symptom also - mine just effects me during migraines 7. I believe (for me) that the illness is what has changed me! My meds arent mind altering drugs- the depression and frustration is tough to handle! Also another symptom I've been told is a mild "mood disorder" My mom says she can tell when I'm going to be sick because my moods are all over the place a couple days before!! 8. If you mean like ...your body feels too heavy to carry sometimes then yes...mostly my head.I describe it as laying on the floor and lifting your head and holding it that way! My neck gets unbelievable pressure and that's how I describe it just a "heavy feeling" 9. On mild days I feel "floaty" like floating on water -On bad days It's like everything around me is spinning like when we were kids on a merry go round. When I lay flat I feel like I'm rocking in a hammock-it usually stops when I relax completely 10. YES!! tachycardia for me is constant but when it gets real bad I feel like my heart is going to jump out. Dont feel bad about asking anything!! It's the only way to know!!!!! Deanna

Wow! I'm sorry to hear that! We have enough to worry about without them nitpicking to death. I wish you well, just hang in there -everything happens for a reason. I know, it's a hard pill to swallow but just look at how far you've come in spite of all the setbacks! Good Luck and try not to stress....you know where that leads Deanna

Congrats! on your "harvest" One step down just a few more to go. Get plenty of rest in between and you're in my prayers! Make sure you keep us posted on your progress! Good Luck!! Deanna

Welcome Sue!! As glad as I am to have another new friend I'm sorry that it took this to bring you to us! Dont be shy about the questions the rest of us arent! I found this site a couple of months ago and have learned alot of neat tricks to help thanks to everyone sharing their experiences with me. This serves as a support group for me because there isnt one where I live as a matter of fact I only know one other person (personally) who even has this illness other than me! Everyone here has made me feel so welcome so I'm sure they will you too! You'll find that when something new happens in your life or to your body that you cant wait to share it with everyone on the forum- definitely when it's humorous -after all you dont want to fall behind in our "brain fog"/"duh" moments! We like to make fun of ourselves - it help to not go crazy! Good Luck! Deanna

everynight my brain has a hard time stopping unless I take my zoloft about an hour before bed sometimes it helps slow me down enough to sleep. I can relate to the frustration...I've picked up the phone to call someone and dial and while it's ringing completely forget who I was calling! I've learned that lists are my friend!! I make lists for "normal" activities like errands I'm running or calls I need to makejust so I can make sure to do them.

no problem glad to help! I like getting to know everyone better also, I mean we share pretty specific details about our lives and illnesses so it makes us more "friends" to learn about each other.

For me the concentration is also difficult and memory is a real accomplishment. Small things like how to spell simple words will be out of reach to me or talking and forget a name or struggle for the right word to use. My attention span is very short when I get this way. I'm not sure if it is BP related or what causes it all I know is that it is a pretty common symptom and usually dont last real long. I try to slow down and think about everything fully before I speak. My friends get tickled with me and I just say at least I have a medical reason for it Speaking of "brain fog" I forgot to mention I have POTS

orthostatic intolerance which isn't always a symptom of POTS I recently found out. It seems according to NDRF that not all POTS patients have the sudden drop or even low BP. So I try to clarify mine when someone asks specifically what I have (at least to other patients who are comparing symptoms to me) Sorry if I confused you with the abbreviation!

It is most definitely worth it! I have two children who are my life!! I also showed first symptoms in my last pregnancy but I think it was mostly due to dehydration(I kept morning sickness all day for 8 months) But like ANY pregnancy story you will hear (POTS or not) they all have their discomforts and hard times but the MINUTE you hold the baby it's all worth it! Make sure to take extra precautions during pregnancy to get lots of fluids and lots of rest but keep your body strong also. I dont know much about IVF but I wish you the world of luck! Try not to let this illness rob you of any experiences that you can help! You may need to be prepared for help with taking care of a newborn with POTS though because the stress of delivery will wear your body out and it does take us longer to reclaim our energy. Things as simple as the sniffles can exaserbate(sp?) our symptoms so just hang in there and we will pray for you!

1. Deanna 2.30 3.POTS, NCS with OI 4.diagnosed about 6 months ago 5.Summersville WV 6.worst- bedridden,extreme nausea,headache/migraine,depression,black -outs,difficulty with concentration 7.best- fatigue& mild dizziness 8.meds that dont help me-5 different beta-blockers ,florinef ,midodrine(by itself) 9. octreotide injections , IV fluids , letting go of my guilt over being ill to begin with ,learning my limits and sticking to them ,zoloft for depression ,lots of salt and lots of water , limit sugar and chocolate( not easy I'm addicted!)

I had a bad experience with a neurologist like that. First he said I had calcium deposits on my brain gave me meds and exercises to do. A month later still no better he said I had a pinched nerve in my neck-I got injections in the back of my neck which took away the pressure I felt but I still passed out. Next was MS, I had an MRI AFTER he told me "without doubt" that I had MS. The MRI was clear so he was still sure that I had it so he wanted to spinal tap me. Absolutely NOT!!! During the course of this I was fighting to keep my job at the usps and was really frustrated! He then decided I was depressed- well I got angry. He wanted to prescribe me antidepressents and then see me in 6 weeks ( still not knowing why I was blacking out and not showing any interest in finding out ) I then said" I'm not DEPRESSED I'm ANGRY! how would you feel if you kept passing out and the DR you see says he dont know why but he'll see you back in 6 weeks?" His response is why I stopped going there. He had the nerve to look at me and say " Well then maybe it's anxiety frustration" I tricked his staff into referring me to another neurologist and he looked at me and said "I dont feel its MS and I want to send you to do a tilt table test because I think it sounds like NCS" That's when my life started to change for the best! It still took about another year to get to the POTS diagnosis but after two more cardiologists and an endocronologist this is where I am now.

My Dr is publishing in a med. journal about this but I think he's more geared to the effects of Octreotide on POTS. I'll ask him about what we would need to do in order to get funding or at least in contact with a company who could help us set it up.His secretary would know alot and she's really nice-we're on first name basis after all the trips I've made! Hey maybe we could go on a talk show and get some attention-we are at the very least entertaining! At any rate...I think the publishing idea really needs done and between us all it wouldn't be too much work for one of us! Our symptoms and tests need mentioned for sure and also the amount of time and frustration due to lack of knowledge by the medical proffession in general. Also a disclaimer that illnesses such as MS MUST be ruled out first as they carry the same symptoms list. Some of what we went through to get here still has to happen but the Tilt Test needs mentioned. My Dr is trying to make it obsolete because he says there is no sense it putting an other wise healthy patient through it when a standing test or stairmaster will provide the info they need without drugs. My tilt was very unpleasant -now the standing test still made me ill but all I had to do was stand still hooked to a BP and HR monitor for 20 min.(didn't make it the full time )and within 4 min my HR had already started to spike! The stairmaster is my enemy!!! I went from a HR of 97 resting to 197 in not even 5 min on that thing and got really sick! Stairs dont like me much these days enough of my bio. Keep me posted on our idea!!

you can check with your local rehabilitation center but I dont know if they recognize POTS or not sometimes they will help with tuition with a handicap. Most places unfortunately still haven't even heard of it though. Good Luck!!

I agree totally! Our stories need shared if for nothing else than to "shame" Dr.s into learning more about us! Maybe we could save other people the heartache of years of thinking they're nuts when nobody can find what's wrong!To read the symptoms and stories and think "hey maybe I have pots" could really help. I'm no writer but I wouldn't mind sharing my story and letting someone with the talent and desire clean it up for publication! My Dr is doing a video interview on me in April for Novartis(they manufacture octreotide) to get their attention that POTS is a real disease and this med.does help! He has a real desire to get this illness recognized-he provided me with study articles on it comparing it to more definite disabling conditions such as COPD. We have MORE disabling symptoms than COPD patients. I used the article in my fight against SSDI. I could get more like it if you'd like to use them! People need to know that our illness is like any other and we CANT stop it-it is a lifelong struggle and NOT all in our heads. One article actually pointed out that we are usually tougher than most because we are so use to "pushing ourselves" to get through daily activities.We dont give up easy and strive to continue "normal" lives.

What kind of sweat test are you having? I had one that only involved 3 small probes stuck onto my skin -one on each foot and one on my arm- it sent a mild electric shock through my body and measured it in a fluid filled bubble attached to the probes. I wore whatever I wanted and had no powders or dyes put on me. It was completely painless and I only had to lay still for a little while. Maybe you're having something completely different.

I know what you mean, I'm still struggling with the suspicions that I'm somehow causing this or making it seem worse than it is. My mom's first response is to start asking me if I'm doing everything I'm supposed to do. She means well but I'm touchy on the subject anyway. My friends and family (that I dont see regularly) still ask "haven't they found out what's wrong yet?" I cant seem to get them to understand that POTS is what's wrong it just doesnt have a fix! Maybe it would be easier to handle if people had actually heard of it before. It adds to our "uniqueness" Just another way to be different Who needs "normal" anyway?

I dont really know how they determine how much fluid I'm assuming an educated guess. Goldicedance: That explains why we feel so rotten in the morning as opposed to evening! By the time I would be willing to allow them to put yet another needle in me I'm desperate enough for the "quick fix" just to jump start me until my body can regulate on its own. I'd use it just as a last resort .... I'm pretty sick and tired of being sick and tired ya know what I mean? Maybe between us all and our many Dr.s we'll figure out how to at least manage our symptoms!

All a standing order means is instead of having to see another Dr I'd already have orders to just go in and get fluids. Yes you are in the hospital but only for as long as it takes for the IV bag to empty- usually a couple hours. It is just a saline solution (pretty much salt/water) that is fed through IV so that it goes directly into the body without drinking it. Quick rehydration! I've had to do it before when I was so nauseas that I couldnt hold down anything so I couldnt get the fluids I need. It leaves you feeling better for as long as you can keep your fluid levels up. I use it as a jump start and then try to drink as much as I can. I learned this while pregnant- when the body is dehyrating nausea and vomiting usually occurs well it's a catch 22 you throw up so you dehydrate more and because you dehydrate you throw up. The only way to stop is to bring the fluids back up to where they need to be. How much you get depends on how bad you need it.