danelle

Michelle, you're helarious Point and shoot, that is too cute! Sue, I'm sure my husband gets them too, when he has the chance to get lucky-Bless his heart and other things as well

I want to address something and I hope it doesn't offend anyone but I bet there are others out there with the same questions(atleast I hope so)..... Actually, I will just put it in question form: 1. Has anyone else experienced a huge decrease in wanting to be "intimate"? 2. Does anyone else have numbness in that area? I have it from time to time and it is generally on one side only. 3. When you get intimate with your partner do you have such bad palpitations that you have to quit? It seems like every time I finally am able to get intimate, I get these crazy heart rythms that make us have to stop(the rate is not always fast, just irregular) 4. Do you have these same crazy beats when you get the least bit excited, slightly angry, sad, tired, etc. I can say that the LEAST little bit of ANY emotion sends my heart into craziness-just wondering if that is normal with POTS or if it may be something else. I can be scary and very bothersome. Thanks for everyone's help with these questions, hope I didn't offend anyone.

This happens to me, too. It usually only happens when I am having lots of symptoms though. I guess it may be because all our blood is at our "toes" and there isn't enough in our arms to give out a reading. Or either our pulse pressure is absent enough not to even pick up one number. Who know what the heck is going on. It seems like as time goes by I have more and more symptoms with greater severity............. Anyway, just wanted to let you know that that has happened to me too danelle

Any suggestions on a good protein drink that doesn't have lots of sugar in it or artificial sweetner? I have been having to drink slimfast to get some protein because I haven't been able to eeat very well lately(nausea, swallowing problems,etc) I enjoy the taste of slimfast but it has so much sugar that i find that my bloodsugar is bottoming out a few hours after I drink one. I tried their high protein drink but they are sweetened with nutrasweet or something and they are nasty. I don't care for artificial sweetners, most give me a headache. one more questions-does anyone else have problems with trying to choke and "forgetting" how to swallow? This has been happening alot lately. Weird huh?

Amy, sorry to hear you are having such a hard time. I also have spells when I lose 20 pds in a drop of a hat. I am in one of those spells right now. With my first pregnancy, I weighed 108 prepreg and after Idelivered( i gained 45 pds) POTS hit me full force, within 2 months after delivery i went from 153(right before delivery) to 94 pds!!! This was 19 yrs ago. I had no idea about POTS, noone knew what was going on. I also had major POTS sx as well. I used to be very fit and muscular-for a woman-because I was very active. I quickly lost weight and muscle. I virtually have little to no muscle tone. I do believe from all I've read that it is probably POTS related but if you feel unsure, check with your cardio or GP whichever is treating you for POTS. Don't know if the breastfeeding has anything to do with it. Guess it could, cause the baby will get the nutrients it needs and may deplete you from some but PLEASE don't take that as advice, ask you dr about it. Like I said, it's just a guess. Sorry I couldn't be of more help. Just wanted u 2 know u aren't alone Hugs, Danelle

1. Danelle 2. 37 3. POTS, CFS, fibromyalgia, depression, panic disorder, chronic anxiety, hypoglyclemia, ?inappropriate sinus tachy(dr's can't agree), mild MVP, etc etc 4. 37, but have had symptoms for 19 yrs, maybe even longer 5. NC 6. Where do I start? Literally unable to function, EXTREME fatigue and weakness, BP readings whacked out, dizziness, black out spells, tremors, cold clammy sweats, bad tachy, bedridden, major brain fog, slurred speech, chest pressure, lightheaded, nausea, palpitations, increased urination and thirst, panic attacks, major anxiety, shortness of breath, total exercise intolerance, confusion and not able to think properly, unable to stand, even sit for any length of time, headaches, heavy and numb extremeties,, diarrhea/constipation, difficulty getting enough air, unable to "stay asleep", can't drive, sweating but worse at night, muscle/joint aches and pains, can't eat much at all without feeling full quicklyand for hours and nauseated (less than a half a sandwich), ringing in ears, inability to tolerate any heat/sun, can't tolerate any extra stimuli, temp extremes, honestly, I could go on and on.... 7. Unfortunately same as above but a litte less severe 8. Lopressor, sectral, cardizem, corgard, midodrine, florinef, wellbutrin(that's what i can think of off the top of my head) 9. Atenolol works somewhat, klonopin helps with the anxiety and panic but it is still there, increased sodium/fluids/gatorade-i guess helps, compression hose help somedays, rest rest and more rest I'm sure I forgot some things but this is what I can think of right now. I too have colored my hair blonde

Thanks Briarrose!! I am going to print all these out so I don't feel so dumb when I ask someone the same questions over and over!!

Hang in there Paige, and please keep us updated/ How long has it been since you originally applied? If you don't mind me asking, what state do you live in?

Thanks to your replies and finding a Dr who knows about POTS(finally!), I have decided to start my meds. I will start the MIdodrine in about 30 minutes when my husband gets home from work. I am determined to try whatever I can to get better before going the disability route. Maybe they will work, maybe not. We shall see shortly!!! I'm scared but now I'm determined! Thanks for all your support and wish me luck!! danelle

Corina, So glad you found us!! This site has helped me more than I can say! There is much support and compassion here and you will always be able to find someone who TRULY understands what you are going through. Please don't hesitate to ask any question and share your concerns. We are all here for each other. Look forward to hearing lots more from you and welcome once again! Danelle

WOW, it sounds like everyone is on the ball with trying to educate the public, we just aren't getting anywhere. We need to come up with a plan. Hmmmmmmmmmmmm. Surely amongst all of us we can gather something together and send it everywhere, over and over again until someone finally listens. WIsH we were ALL living in the same neighborhood and could have meetings/support groups all the time. But wouldn't that be a sight They would probably quarantine our little (or big) neighborhood Doesn't hurt to dream a little I don't guess. I wonder if we could have our own "convention" so we could get together and put all our foggy little brains to work. If we could find a central meeting site and maybe make it a week long or something. Everyone could come prepared with all their info and we could compile it into something spectacular!! ----------Just dreaming again, BUT dreams do come true!! Danelle

It sounds like baby steps and baby doses are something I should atleast try. I do sometimes wish I didn't have any medical knowledge so I wouldn't know to be afraid Amy, I'm not offended at all about what you said, what you said is SO true of me. I too have had panic attacks/chronic anxiety since the age of 18-not sure if it were the POTS that caused them or my mother's death cause they both happened right after the birth of my first child at 18(I was just a baby!!!). I do know that I have MAJOR issues with this and I really wish I could afford to see a counselor but I can't right now. I am on clonazepam daily which I guess helps some but I still stay scared all the time. I am really sick of living life in fear of everything. I can consume your every thought, and you get no where but sicker when you do it anyway. It is a habit that I have had for so long that I don't know how to break it. I do know that before POTS, I was a daredevil. I loved any kind of excitement. Would take on any dare, especially the physical ones. I loved roller coasters, scary movies, all kinds of sports, just a very very active person. Nothing frightened me. I'm just not sure where that person has gone Would like to find that part of myself back, even if I know I can't do any of the physical stuff again, just the attitude and zest for life and adventure!!! Thanks for everyone's support, once again. I honestly couldn't make it through this stuff without you guys. If I ever win the lottery-POTS will be on tv everywhere, education galore and it will be as well known AND understood as heart attacks!!! Everyone send me the winning numbers telepathically(sp?) and we'll all be "rich" with help Many hugs and thankfulness, danelle

Sorry about the spelling, I've got major "fog" today!!

Hi, just wanted to let you all know that I feel that we POTS folks are so desperate to get info out to the public, and medical profession that I did something crazy! I went to the Oprah show site and sent her a email about POTS and pleaded our case to have a show about it. I told you it was crazy but guess it doesn't hurt. I also got to thinking that if everyone on her did the same thing, maybe it would have a bigger impact. I realize that the show gets thousands and thousands of requests every day but if they ever take the time to read one of the requests about POTS and investigate just a little bit, don't see how that could pass this topic up. It's worth a try!!!! So come on everybody, get on the bandwagon and email good ole' Oprah, who knows, it may just work!!! Just call looney and desperate, Danelle

Big thanks to all the replies! MM, thanks for the input!. Still not sure about the EP studies, how they differ from an ablation(other than the fact that with the ablation they actually take action and "fix" the problem) And still not sure how they can figure out if it's just POTS going on or something electrical by doing the study. Sorry to act ignorant about it but I am having major brain fog today and can't think clearly. Atleast I will use that as my excuse Danelle

I was just wondering if anyone is as scared(more like totally terrified) to try new medications? I have been given some prescriptions for Midodrine, Florinef, Wellbutrin but I am too afraid to try them. I do feel absolutely miserable and virtually unfunctional but I have had such bad experiences with meds in the past that I just can't make myself try them. I know you all are thinking "but if you don't try them, how will you ever know" and that IS true and I DO understand that. I just have this overwhelming fear of something bad happening to me if I take them (in particular SVT, irregular HR, stroke, anaphylaxis, and the list goes on and on and on......) Now that Dr Grubb is "iffy" about whether or not I may have a electrical problem as well as POTS(Not instead of), it makes me even more scared. I have daily irregularities in my HR and daily tachy now (and that is with NO caffeine, smoking, alcohol, etc) that I just know that any new med will make them worse and then I TOTALLY freak out. and I do mean panic in the worst extreme fashion. Even if I try and take a few sips of my husband's coke/pepsi, if i get more than a few the palpitations start. And I am very sensitive to meds anyway. I have come to realize that everything in life now terrifies me because of this POTS thing and whatever else might be going on. I hate to say that I am not exaggerating. Mortified might be a better word. Anone else like this or anyone been able to overcome this? IF so, how? I really need some psychological help in this matter but can't even afford my copay at this point. Being a nurse, I look up EVERY side effect to any med given and always think the worst, just don't know what to do. I just don't feel safe anywhere, anytime. Danelle

NIna, can you tell me about the EP studies you had and what they were like? How can they tell if the rapid rates are from POTS or something else? How fast does your SVT get?

GOSH, I have lotsssssssssssss more salt than that and sometimes it still doesn't help. I add salt to everything and put atleast 1 teaspoon in each glass of gatorade I drink 3-5/day plus all the added salt.

Thanks for all the responses so far!! Sorry about the abbreviations, they mean: SVT-supraventricular tachycardia(which means above the ventricles) Afib-atrial fibrillation(where your atria go into a very irregular rhythm) EP study-electrophysiology testing(it's where they run lines up through your groin and "map out" or check your heart's electrical system by making go into bad rythmns and seeing where they originate-if they see something that they can ablate-thus and ablation) TWave abnormality- This is on an EKG, it's hard to explain but just an abnormality that they pick up on an EKG Sorry for all the confusion=Hope this helps. I just can't understand why DR Grubb would recommend it with my POTS diagnosis. He said I may have 2 things going on instead of just the POTS (cardiac wise) so it isn't to rule out POTS.

Nina, Where did you have yours done and where all the dr's familiar with POTS? THere are some dr's here that do EP and ablation(only of the AV node, not SA) but they know nothing about POTS. How can they differentiate between what is POTS rythmns and what is electrical problems? What did all of yours show and why did you have so many? What is the difference between the ones that you had? I have heard and read that an ablation can be detrimental to POTS folks? Thanks for any info you can give me, I am so confused and nervous.

Update, just spoke to Grubb's nurse, believe it or not! She specifically asked him about the rate, etc. He said that you CAN have SVT with POTS but it usually doesn't go above 150 and he recommended an EP study... I am totally devastated. The Heart cath terrified me so bad that I had to make them stop the procedure, how can I go through a EP study??????Now I am beyond terrified, extremely depressed and sooo sad.....................................................

Hi everyone, I will make this short cause I am sleep deprived. While trying to go to sleep last night my heart rate went from 62-170 in less than a minute. I could feel it happening earlier but would cough and get in under control, this time I couldn't. I called 911. While waiting for the ambulance i had a monitor i put on and got these rates. It showed SVT. When the ambulance arrived they told me I was in AFib and my rate at that point was 130-150's, Short of breath, chest pressure, dizzy, the whole 9 yards. WHen he told me afib, i freaked out. In the ambulance he conintued to say afib with my rate still 120-130's. I coughed realy hard again and apparantly got it back into sinus tachy. Paramedic is a super guy, i really like him, (he is also a friend of my son's-he is a volunteer firefighter) He knew nothing about POTS-SURPRISE! At the hospital I went throught the usual questions, had a Dr who didn't know squat and not very friendly. Said I wasn't in AFib in the ambulance after looking at the strips ,(not so sure I believe him) told him about POTS which he didn't want to hear. He said "Iremember you from a month ago" I had been sent there from work because I was faint and my BP wouldn't register. He did the lab work, EKG, etc. Said everything was perfectly normal, just sinus tachy. I MADE him call and get the recording I had sent over and he said "oh yeah, you had some SVT" he asked if I had ever been told about an EP study and ablation and I tried to explain why POTS folks shouldn't have one-he wasn't interested. I did ask the nurse to give me a bolus of normal saline. she looked at me funny but did so anyway. When it was time for me to leave, still in sinus tachy-even laying down-much lesss standing up, I asked about my potassium. He said it was normal. I asked for the figure and he came back and said "well actually it was alittle low" Normal 3.5-5.5 Mine was 3.2, which doesn't sound THAT low but mine usually runs in the 5 range. I asked for some potassium and he gave it to me and told me to follow up with my cardiologist today. (I know that low potassium can cause arrythmias, but I have too many other episodes of SVT when my potassium is normal to just write it off to that) I called the cardio office and spoke with the nurse. Told her what happened and she said, "have you ever had an EP study and ablation", you might want to consider it. I again tried to explain the POTS thing to her and she asked if the Dr was VERY SURE that that was my dx and not anything else. I said that is what DR Grubb told me. Now I am doubting if POTS is the only cardiac problem I have, even though I have had a heart cath,etc. If I do, it is electrical not "disease" causing. Questions: 1.. Do you all have SVT or even Afib with POTS? What is your highest SVT rate, not sinus tach? 2. Does this sound like I need to have further workup for electrical problems? I know if I do it would have to be an EP study that I am not wanting at all. 3. Anyone other than me have an T wave abnormality on all their EKG's(I think Mighty Mouse said she has them too, am I right MM-Hope your feeling better!) I am now sitting at home TERRIFIED beyond words that something else is wrong and that it will happen again at any minute-what a way to spend your day, hours, minutes-just waiting..............!! I didn't get home until 3am and got up at 7, I am too scared to lay down. Can someone please help me understand this. I put in a call to Dr Grubb's office but we all knwo how that goes. My cardio will be gone til next week so I am left in utter terror. I am sooooooooooo tired of unknowledgeable Dr's and ones that don't give a ****. Sorry to vent, just disgusted. Oh, by the way, I have been struggling with the disability issue for a while now because of how bad things have gotten and I asked God yesterday to please give me a sign, I am so afraid I will make the wrong decision. My husband says that was my sign. Do you think it may just be coinsidence? I just can't come to grips with giving up my nursing degree that I worked so hard to get and the financial stress would put us under quickly. We can't make it on my husband's paycheck alone but I knwo deep in my heart I can't continue to work. Any and all replies will be GREATLY appreciated! Hugs, Danelle

Paige, Thanks for asking this question. I asked a similar question about a week ago. I not only have a very rapid heart rate and shortness of breath when out in the sun but also I get extremely dizzy to the point of almost being disoriented. (and the dizziness is not always related to the increase in HR). It not only happens on hot days but cool ones as well. It seems as though the sunlight itself is too overstimulating for me. I love the sun but haven't been able to enjoy it at all over the past several yrs. Gets worse each yr. I have tried the increase in fluids and salt but there have been some other great ideas given to you here that I will try as well. DOn't know if it will help the dizziness/nausea/fatigue/etc but I am willing to try them. Thanks to everyone for their helpful hints. Maybe I can be able to walk outside without feeling faint/drunk/etc soon danelle

Nina, Get u some padding for that concrete deck---and for the rest of the house as well Hope you feel better soon. We can all relate to those clutzy stories. Danelle

Jess, This was a great topic to start/ I read the responses daily. Migraine-like I said in my post, i have been with my husband for 24 yrs(married 20-been together since i was 13, him 15-scary huh) and he still doesn't understand. He is 40. Don't hold your breath on the age thing. Gotta tell you something on a lighter note- a few days ago after trying to have a talk with my husband for the umteenth time, i went and took a shower. After my shower I was combing my hair and doing the usual stuff. I could feel my legs "filling up" and I looked down and of course they were very mottled (purple) so I said what the heck. I called my husband in the room and said "Hey look at this" He looked at my legs and his mouth dropped(I haven't pointed it out to him before) and he said good grief, and I could see genuine concern in his eyes....Well, I was so disgusted from the conversation earlier that I did something kinda mean in a joking way. I said, "Now watch this" I laid down on the bed and lifted my legs in the air until the color became normal again. He just stood there amazed and worried.. He said "Gosh, it really is hard for you to stand isn't it?" Duh, Hello? This is what I have been trying to tell you for months, years now. Maybe you just had to be here but I think it was somewhat of an eyeopener for him and I had to make a smarta$$ joke out of it. Needless to say, he's been a little nicer since then.... Glad to know I'm not alone but hate it for everyone else too. would write more but I am having brain fog today and it's taken me forever to find the right keys!! Hugs and support to all, Danelle