Ash

Thanks for the ideas everyone! I will keep working on it! Just sorry to everyone who has to read all my run on paragraphs ; )

Your post made me laugh cupcake mommy! When I was telling my husbands grandmother (in her early 60's) what I got diagnosed with and what dysautonomia is, she said the same thing your momma said even now when I try to talk to her about it (she is the only family member on his side that asks about my health which I am very thankful for) but anytime I talk to her about my symptoms I end up listening how she has all the same symptoms but still works part time, helps with the ranch, cooks, cleans house, etc....always makes me laugh....so I guess unfortunately everyone has a slightly functional dysfunctional family ; )

Hey I am not sure what causes it but the last few weeks I have noticed the same thing. Today at work it was really bad, I got this sharp pain up my neck where the vessel on the left side of my neck felt like it was going to explode(i didnt look at it but it felt really swollen)and it went down into my left arm and in my chest. I am seeing my cardiologist tomorrow and was going to ask him, so I will let you know what I find out. I am glad others have experienced it as well it was beginning to scare me a a little. I am also sorry about your husband, I hope he heals quickly. : )

Sorry about the reaction you had puppy love, those can be so scary! But I am very glad that the ER was helpful and nice to you, that can make such a huge difference. Hope children's is able to help you! I am originally from PA and had spent a week in children's when I was 13 (they never did find out 100% what was wrong with me, surprise, surprise ) but I remember everyone being very nice.

I agree SaraC! It's funny you mentioned people that have cancer because I have felt the same many times and feel horrible for being envious of them, I have a friend who went through chemo and did have a horrible go with her battle, but she is so active now, that I find myself jealous. Sorry you had a hard time with work,it can be frustrating having to constantly explain what you have and then have people just look at you and say but " you look fine". I am glad your husband is supportive, mine tries but unfortunately doesn't understand much about what dysautonomia is : )

Nope : ( hmm any other ideas?

Thanks cupcake momma! I am on an I pad...lets se if it works : )

Thanks for sharing Katie! That is one of my favorite sayings : )

So I know they say no question is a stupid one (kinda think this might rank in the stupid category though) but I can't figure out how to make spaces in my paragraphs. I will hit the enter key and it will have spaces in the draft but once posted it crams it all together. Any insight would be greatly appreciated. I know I am not the best with grammar and spelling, but the all clumped together thoughts is about to even drive me nuts. Thank you in advance. : )

Your not alone! I feel like for me my brain fog gets worse as the day goes on based off of how worn out or tired I am. Some days I find myself not being able to remember the simplest things, the right word( like I will say another word when I met something entirely different), when it is really bad it is like being in a black hole I can't get out of. Some days it makes me laugh at myself as I spent a good 15 mins the other morning looking for my cell phone only to realize I had it in my hand, or opening the fridge to find something to make for dinner only to realize I have everything already set out on the counter for dinner.....and some days it plain scares me, like going to numb up a patients for a filling and not being able to remember what tooth #28 was and what side I needed to numb (I had to walk out of the room it made me shake) or driving somewhere and arriving not knowing how I made it there....brain fog for me is probably one of my top 5 most consistent symptoms and yes I am sure on my really bad brain foggy days I wouldn't score well on an IQ test either ; )

Thanks BellaMia! The Omron brand is the one I have too! Glad you've also heard that "it can't be that high or you wouldn't be alive" Funny what our bodies can survive. Yes Friday alone ; ) I will keep you all updated.

Thank you so much everyone for all your advice and input. It is sad that so many of us have gone through such a horrible doctor experience. So an update of my appt on Friday with my cardiologist....it was ummm interesting to say the least. It was the first appt my husband has been to with me (not sure that was the greatest of ideas on my part) I did take a BB 2 hours prior to my appt (big mistake because my HR and BP looked pretty "normal") so I showed my doctor the vitals I had been recording on my wrist cuff which he has always taken into consideration, well for some reason Friday his response was "that can't be correct" "your vital should not jump and change that much in a day" ummmm well they do thus why I am here! (Plus on the days i work i use the cuff at work and it has always been in the same range as my home one, he response they must both be faulty?!) But of course my laying down(for 1 min before they took it) to sitting and standing don't look too bad when I am in the office with BB..so he wanted me to get a arm cuff and take it on that for a week then come back to see him with both monitors to compare it to his (well 100 dollars later..the arm cuff and my wrist cuff are either dead on or within points..so I guess my readings have been pretty accurate?)...well then my lovely husband decides to tell the doctor about his sleep problems and upcoming tonsil and nose surgery and asks the doctor if his problem is the reason I can't sleep, and that is causing all of these other things going on...so then they talk about my sleep patterns without my input and finally the doctor asks about sleeping pills (I have tried 2 different ones, yes they helped me sleep better through the night but I still felt crappy during the day so I stopped taking them) so my doctor told me to drink 2 glasses of wine..me "I don't drink, when I have tried since being sick it only makes me feel worse, but I do take a Benadryl before bed almost every night and it works pretty good, although I do wake up with surges, I will be sweaty and my heart will be racing" Doctor " are you stressed, have anxiety" me "no I mean I am type A personality but I don't feel stressed" then my husband "she stresses out over everything all the time, etc, etc, etc (this point I had to remind myself I prison orange would NOT look good on me because I could have strangled my lovely husband)... So I am pretty sure my doctor now thinks I am a stressed out hypochondriac ..thank you dear husband. And with all the chit chatting the 2 where doing I wasn't able to ask any of the questions I had about anything.. I do meet with him again this next Friday and am hoping since both BP cuffs are the same he will believe the numbers, he did say once he can see the "true" vitals then he can give me guidelines of things to do.....

I am so sorry about your mum giraffe.i haven't physically lost a family member just emotionally and so I can't fully imagin how hard it must be to loose someone so close. Yes, it is hard, even yesterday I was struggling, his parents knew I had went to the ER Thursday and was too sick to get out of bed Friday and yesterday when we went over to their house I had to sit and listen to them tell my husband he needs to rest more and take vitamins because he sounds like he is getting a cold (which my husband of course ate up) funny how all morning long he never mentioned feeling sick..then I had to listen to his mom complain all day that she was feeling under the weather and had a long week ahead and had to take it easy...I wanted to scream! I mean here I am with a Pulse of 157 bpm standing here getting ready to do your chores because you have a head cold and you know I didn't feel good but let's not ask me how I am feeling just everyone else in the room. Sorry apparently I need to vent a lot! ; ) I guess though we have each other to understand and support one and other. So thank you for your kind words and please know that if you every need to vent or just chat I am here to listen : )

Your not alone : ) growing up I wet the bed fairly often (not a great home life) and when I was placed in foster care in my late teens I thought I had gotten a hold of the problem, however if I was under a lot of stress or not in a super great home (alcoholic, abusive, etc) it would happen again. As an adult it has happened off and on occasionally mainly if I am under stress, have a "lovely" peeing dream, or about 2 yrs ago (the last occurrence at home) I had a really bad UTI infection. It did happen to me last year when I was in the hospital after surgery not once but three times! Talk about humiliating being 23 yrs old and not having any bladder control when your sleeping although I thing the combination of the anesthesia and all the drugs where a huge factor. Most nights I do find myself running (well bouncing off the walls) to get to the bathroom because I had been dreaming about searching for one...I would say if it is a one time occurrence try not to worry about it too much a lot of things could contribute to it and being tired and stressed is one. Although it might be worth mentioning to your doctor and seeing what they think, and I would more then likely get it checked out if it where to happen again especially if you don't have a history of wetting the bed....

Thank you so much everyone! I am so sorry that all of you have also experienced this, it shouldn't happen! Doctors are supposed to care! I am still feeling mirsable but at least am not so emotional at the moment thanks to all of you! I don't have a POTs specialist doctor my cardiologist (whom I love) was the one to diagnosis me and has suggested to send me to an electro cardiologist (sp?)but felt like we were maybe not at that point yet. He did send me to an internist (who I have a like semi dislike relationship with) my cardio dr wanted the internist to rule out anything other then POTS that could be causing a problem, he never ran any tests just looked at past tests that have ever been run on me the last 3 years and diagnosised me with CFS and IBS (I had been diagnosised twice already with both those thing previously by separate doctors) the internist doesn't really know or believe in POTS per say but has always offered treatment constitent with POT recommendations so I have kept him as we live in a very small town and doctors are pretty slim. The cardiologist did call me twice this afternoon the second time I talked with the nurse she asked what my BP and HR were and they where 53/27 with a HR or 127. She seemed a little worried told me to eat everything salty I had in my pantry, drink tons of water (I am pretty sure I should be floating right now with how much I have already drank) and to get to the pharmacy or have husband go to pick up a prescription to help raise those numbers (which didn't happen because well we live 20 miles from town and I am not driving and felt bad making my husband go..soooo it is salt, Gatorade and water ) she did want me to go back to the ER if my vitals didn't raise within a couple hours (but I think I might have to be unconscious before I every go back there again). I am going to go tomorrow to see my cardio doctor he is in the clinic an hour away from the town I live in and offered to drive over to see me at my usual clinic in the morning. So I am going to take all of your advice and ask about IV saline therapy, and maybe getting a note for emergency visits, I am also going to ask if I can go to a specialist (if he knows of one) and let him know I a willing to drive as far as I need to. Are there any more questions that you all think I should ask? I am thinking we should compose a book of all our most horrific and maybe funniest Hospital/doctor visits, I am sure it would make for a very interesting and maybe slightly comical read. Thanks for all your input.

Last year when I spent the 12 days in the hospital parasites and worms were considered heavily especially since we have a couple dogs, barn cats, horses and my husbands grandparents and parents (we live 4 miles away from) have cattle, pigs, goats, sheep, chicken, etc. and well since I love to love on all the animals the doctors thought it might just be the answer. however, after much looking and testing they never found anything concrete but did order some lovely dewormer (?) pills for me to take, it took 3 days for the hospital to get them, and they looked identical to the same worming pills I get from the vet for our dogs. So it may be worth asking your doctor about. I know a few years ago my husbands grandmother decided to worm herself using ivermectin (that we give to cattle and horse) and said she felt a huge amount of benefits and did "pass" some well I am guessing worms? A lot of other members of the family did it as well and stated the same thing, but I was too nervous to try it. However, there is research out there about using it for humans. Here is some info on it for humans, I believe in this link they used the "human" type opposed to the "cattle and horse" type my "family" did : ) http://www.medicinenet.com/ivermectin-oral/article.htm

I get something a lot like this too. I was talking to a friends who's daughter has CFS and she experiences it as well and calls them "body comas" I liked the name so that's what I have come to term mine too. It is like my mind is active and I know I need to get up and do things or even move my body into a more comfortable position but I can't like my arms/ legs/head weight a billion pounds and as much as my brain is telling me to move nothing is happening, if I don't have to force myself to get moving (takes a good hour) then I will fall asleep and generally feel a little better upon waking. I do like the dart analogy because that is exactly what it feels like, a being shot with strong sedative.

Okay I have seen many rude doctors but today may have been the worst one I have seen yet, and I just need to share, well because I am literally sitting here bawling my eyes out and can't stop. So this last week my symptoms have been pretty bad with exhaustion, faster then my "normal" heart rate and a more severe headache then normal. This morning my BP was 79/45 with HR of 70 a little higher then my "normal" but not by much, well 5 mins after standing it was 161/149 with a HR of 136 (I took it 3 different times and on 2 different machines and got around the same reading on all of them, just to be sure it was right) so most days I would carry on with life feeling crappy because that's what I do every single day. But my husband and I are trying to get pregnant and don't know if we are or aren't. So I got to work showed my boss and coworkers and called my cardiologist. He is working in a practice 3 hours away and because we may be pregnant the nurse wanted me to go to the ER. I did take double what I was prescribed of the beta blocker I had been given to try last summer (I haven't taken it for 5 months because it was dropping my BP too low) and by the time the ER checked me in my BP was down in the 120-130/ 80-90 range and my HR was not jumping more then from 60 to 115 upon standing. Well the doctor comes in and asks why the heck I am there because my BP and HR are fine. I asked him if he knew what PoTS was and he rattled off something with the lungs so I said no and went onto explain what it is and that usually when I stand my BP drops a little but not severe and my HR jumps at least 30bpm. Also explained to him that I had been diagnosed with CFS his response " I can't believe you found a doctor to diagnosis you with CFS that is a BS diagnosis that we used in the 80s...at this point I went from laying to sitting very quick (fought the lovely dizziness) and said not one doctor but three and the only reason I was in the ER today was because my cardiologist sent me up here because I was worried with those BP and possible being pregnant! So he says "so your in the ER for a pregnancy test?!" I flipped out my phone and showed him my pictures of my vitals from that morning, and he states "to the low one my wife has those readings all day long, my response "yeah so do I and usually much lower like 50-60/30-40 range reading with hr as high as 153, but I am here because showed him the next 3 high readings..his response "I thought you said that your BP dropped or stayed the same!?" (He was being very sarcastic towards me) I said "umm yeah that's why I am up here" he asked what I wanted I said " to know if I am pregnant and maybe an IV of fluids because it will help me feel better". His response " I can do the pregnancy test but not the IV" I told him to call my cardiologist. He asked why and I said so he can know what POTs is...he took the number and came back 5 mins later and said he called " said my dr said that POTS is what I have and I should "grow" out of it in my 30s (my cardiologist has never told me the grow out of it part so I am questioning that) and that I did the beta blocker and they can do a pregnancy test and then he add I might as well go back to work. By this time I am literally crying. So the doctor leaves send a nurse in and asks me to pee in a cup, I ask if they are going to use the same test I can buy OTC and not a blood or ultrasound, nurse says no just a OTC pee stick, so I told him to save it I won't waste their time and plus I don't want that doctor to give me the news on whether I am pregnant or not. They said okay and gave me papers, I did tell the nurse I was sorry for wasting his time, and he told me that i didn't and if he had those vitals he would have been in the ER too (I think he knew I was upset) I did take a pregnancy test waiting the 3 mins now at home, and have a call into the cardiologist on what I need to do..continue with beta blockers, or do something else? Plus to ask if the er doctor did really call or not. But still I can't believe that i had been treated that way in the ER (oh i am also having slight chest pains and it is radiating down my L arm) and what made it worse is my husband who kinda already has a problem with thinking I am a slight hypochondriac at times already was listening and agreeing with the **** doctor. I feel so defeated. And what's really kinda crappy is I know just a bag or 2 of saline would help me tremendously. So how do you guys get saline when you go to the ER? Or even when do you go to the ER? I know most days I question going , i have had high readings and even much higher readings like this in the past, but with the possibability of being pregnant I kinda freaked out a little, but I know I am not gonna die although it feels like I usually don't go to the ER or even call my Dr and now I am questioning on even if I did the right thing in going and I can't go back to work because they had already rescheduled my day when I left and that makes me feel horrible in its self. Sorry to rant, I am just so lost and upset..... *OTC pregnancy test came back negative : / I did have spotting on the 19 and 20 of Jan(no cramps, which is very very unusual for me) and if that wasn't my period then I am 3 days late however, if it was my period then my next period isn't due till Feb 9. Sorry if that is TMI

Thank you so much everyone for your replies! It really helps to know that I am not alone in feeling this way, i was starting to think I was the only one! I guess sometimes a good cry is really needed and it helps to be able to get those feelings out. Thank you all for understanding, I promise I usually don't whine this much : )

A lot! I have actually asked my doctor several times if it was normal I would say at least every 2-3 hours maybe longer on a good day and like Katybug probably every 30 mins to an hour on a bad day and at least 1 x a night good day and more on a bad day. My husband is convinced I have a bladder the size of a pea.... My doctor has suggested more salt to help increase water retention and has advised to make sure to eat foods higher in potassium and magnesium, I also take a vitamin that contains magnesium.

Thank you so much Arizona Girl, I am going to have my husband look at the video when he gets home. I haven't ever had my immunoglobulin's checked I didn't actually know they could and will look into it. I know I was born a 6 weeks early and was in the hospital before 6 months with pneumonia, and had been pretty sick most of my life growing up, it never seemed to fail if someone is sick around me I will get it. So thank you for the information. I am sorry for what you went through, I know it is not easy to not have your family's support. And I hope that your family is becoming more supportive as you continue on this lovely journey we have been dealt.

Thank you guys. I guess today I just hit my breaking point ....With everything going on and then I had to do a 4 hour presentation for work which required standing the entire time, I hated that the entire time I was talking I was struggling to stand, to talk to breathe, to not pass out, that all last night I was worrying over not giving the presentation, but if I was going to be able to physically make it through and about how sick i would be after and how many days I am going to be flat on my back because I was just doing one simple "normal" task. And then with my husband called me all excited with his news it kinda made me want to crawl in a hole and well just cry. So thank you for listening and replying. It really does mean the world to me. I hope the both have a good night. : )

Hello Everyone! I am new to this forum and am so thankful I found it, there is so much great information! I wasn't going to post anything, but I am hoping I am not alone in this venture and well I don't have anyone to vent to about this topic so here I go....i will try to condense everything as best i can, but i am sorry if I put you to sleep ; ) So 3 yrs ago I got really sick with a sinus infection and pneumonia 7 antibiotics and steroids later and 5-6 months for good measure and a few hospital visits I was able to get rid of it. However, I never truly felt "better" so my quest for answers and many doctor visits began. Then I started dental hygiene school, I struggled on and even started to believe the doctors when they said "I am too young to be sick" "it is all in my head" "your depressed (although i was the happiest I had every been in my life,despite the being sick part), etc,etc,etc....so I tried an antidepressant with no real relief and struggled through school, I graduated and started working my husband and I bought a house and continued with life all the while, I was fatigued, had constant GI issues and was noticing that I was becoming more dizzy and lightheaded when standing, even passing out, back to doctors and still no answers (also had many ER visits while in school for these problems). Then about 1 yr ago, I got home from work one day and barely made it in the door, my stomach hurt bad and I was passing out..so off to the ER again (yes by this time they knew me by my first name) I spent 5 days in one hospital and then was transferred to a bigger hospital 3 hours away and spent 7 days there. They grasped at straws, I was poke, prodded and had my gallbladder out and sent home (no gallstones they just found scaring) I expected to get better and I got worse, I couldn't stand most days, back to a new doctor and she found a bacteria infection in my blood and very low vitamin D levels and borderline B12 levels, got IV antibiotic for 5 days and 6 weeks of erythromycin (I am allergic to penicillin, keflex and another that I am not sure how to spell correctly ) during this time I was sick which most of you have experienced my heart rate was soaring, I was dizzy and so nauseas I was puking just standing up and having some very lovely other GI issues. Finally went to ER they didn't know what was wrong but did tell me my HR jumping as much as it was, was not normal and I needed to see a cardiologist. As soon as I got home I typed in all my symptoms into Dr google and found POTS, I couldn't believe after all those years there was something out there that fit everything I had been feeling...so I went off to the cardiologist not expecting a diagnosis of POTS or for him to even mention it (I had a huge stack of print outs on it just in case ) and as soon as he listened to my symptoms and saw my heart rate reading both in office and from my Emergency room visit(s). He told me that what I was going through and what I was feeling wasn't in my head, that I wasn't depressed and I wasn't too young to be sick (23 at the time) and that all of my symptoms sounded like postural orthostatic tachycardia syndrome.i do feel very blessed to have such an amazing cardiologist and although I am not really feeling much better then a year ago, I am at least coping some what better to the many symptoms. So here is my dilemma, in the last 3 yrs that I have been sick and 1 that I have been really sick. My husbands family (I don't speak with my parents much, long story. And all my family is in PA and DE I am in CO so even if I did we are a little too far away for much support) my husbands parents who live 4 miles up the road, don't seem to care, I am not even sure they know I have a diagnosis, heck my husband who does try to be supportive doesn't understand it. And it is okay that my "family" doesn't ask questions, our anything else but what is making it hard at least for today is that my husband who has been having more colds and trouble sleeping this past year as well, went to a specialist (FIRST ONE) and got a diagnosis and will have his tonsils out in 8weeks and spend 1 night in the hospital a week or two on the couch and the doctor told him that he will be a new person feel 100% better. And his parents are asking questions, want to be involved, go to surgery, etc. Heck I didn't even get a phone call the whole time I was in the hospital. And I know I should not be jealous but I am. It is so hard every day to pretend to feel good. And I just want someone who truly cares about me and what my life is like or maybe I am just jealous because he was able to get a diagnosis right away (which I am happy that he didn't have to struggle like many of us), or he didn't have to deal with that doubt of truly being sick, or that he has a treatment! I don't know I am sorry to rant, but this seemed like the only place I could. So thanks for listening(reading). I guess my question is do any of you deal with this? With being jealous of another persons health? Or family support? I am sure I am not alone, this forum has proved to me that other people actually are suffering through all the same symptoms and I am so thankful for that. Because most days I feel like I am fighting a battle no one else understands or cares about.

I love everyone's ideas! I agree this is the one thing that is so hard to hear and unfortunately it is almost a daily occurrence for most of us. Most of the time I just say thank you, or the "wonderful powers of make up" ; ) but it does get harder and harder especially when having a really bad day. I think for me, my slogan would be "this in my pretty sick face" and then maybe on the back "this is what an invisible illness looks like" : )

Hello, I am new to the board, but it is funny because I was just talking to my cardiologist about what being "functional" really means. A year ago I was bedridden with my symptoms, some days it was all I could do to get the bathroom, and there were many days doing it ment I had to lay on the floor for about 30 mins before I could make the trip back to bed. One year later, I am able to work as a dental hygienist 3 days a week, cook dinner, and be a little more active and sociable, but in all reality most days I feel the same way I did a year ago. I have all the same symptoms, I think have just gotten used to feeling terrible, and am so tired of feeling like a burden so I am just pushing on regardless. I mean I went to work the other day with a standing (no movement) heart rate of 127 ( with movement I was in the 150-180 range and resting was 72) a year ago I would have been in bed, but I pushed through my symptoms because I didn't want to be a hassle to my coworkers and have them reschedule my patients for the day. So when my cardiologist asked me the other day if I am truly doing better I said, no I have just learned to cope. I have learned that staying out till 11pm playing cards with friends means I am not gonna get to do anything the next day, or if I go ride my horse for an hour I am going to be down for 3 days, I have just learned to spend my energy more wisely and limit myself so I am more "functional" and his response was the best thing I have heard yet...that is unfair! You shouldn't have to compromise your life like that, however, unfortunately that is part of PoTS and CFS. I swear I could have kissed the guy (this was also the first doctor of many to tell me it "wasn't in my head", "I was too young to be sick" "was depressed,unconditioned" etc) and I mean it is sad to think, but i dont think i am going to every feel like I did prior to PoTS, I mean i hope one day i will but to me I am accepting this as my new "normal" my new "functional", as hard as it is and as much as it *****. But just to have someone just tell me that it was okay and NOT normal lifted such a huge burden I feel like every day I put on this "pretty sick face" and try to live this normal life because I am feeling strong for other people all the time, and every day at work I hear well you look better, you look amazing, etc, that it was so nice and refreshing to hear someone tell me what I am feeling every day is NOT normal and to just confirm that I am struggling was great....sorry I am like ranting on your page : ) but I would say when it comes down to define " functional" i think it really depends on where your at at that moment, sometimes being functional is able to shower, sometimes work, or leave the house...but I think we need to remember that it is okay to not be okay some days, at least that is something I am working very hard on. We just have to keep telling ourselves one day we will hopefully feel better then what we did a week, month or year ago. And that although what we go through every day isn't our "old normal" it is okay. Because one day we will hopefully be more "functional" then the last.