lmt033167

1. Dizziness/Lightheadedness/Vertigo; sometimes even moving my eyes starts an episode 2. Fatigue; no amount of sleep or rest alleviates it 3. Nausea; non stop even with meds have tried PPI's OTC meds nothing helps; non stop nausea started after surgery in Aug 2009 4. Extreme Heart Rate fluctuations; low to high without provocation - Bradycardia then it will go into Tachycardia even sitting 5. Extreme BP fluctuations; low to high and then will bottom out without warning or provocation

This is a main reason T quit posting on one of the SSDI forums also. Wow maybe we were on the same one. lol it was my problems are worse than yours so I'm going to get it before you. I actually had someone post that I was LYING about having a malignant heart arrhythmia since it's so rare so I posted a picture of my page where I was Dx and got my account banned. ROTFL after I got over the shock and anger, I laughed about it, because some of the people there are just so ignorant for lack of a better word and some just do not get disabilities they do not see. I've underplayed how sick I am to my family until this year when I've worsened. Dr's are afraid for me to be alone; one day I finally broke down and had to call my mother in law and she was so shocked at how sick I looked when she got here; she was mad because I didn't tell them earlier how much I suffer; but she's sick also and I don't want to burden anyone with my extra problems. listen to your body, you're the only one who really knows how sick you are and ignore those cruel ones

You can, but it's a very difficult thing to prove. Definintely get your doctors on your side by telling them how debilitating your symptoms are and make sure you only see dr's that are MD's not nurse practicioners - I found out the hard way about my current primary who is a NP and knows my case well; legally her words mean nothing in my SSDI case. Find a good local social security disability attorney as soon as you quit working and file the day you quit so your benefits will be backdated to that date.

I have NCS/OI and have questioned my TTT since the day I had it done. Finally I may have gotten some answers as to why I reacted the way I did...my underlying cause of my problems are HOCM (obstructed hypertrophic cardiomyopathy). Then a few hours after the TTT I had an EP study & ablation and my heart stopped a few times on top of it stopping during my TTT; the dr thinks it was just too much for my body and caused major problems throughout and my ANS to go haywire. Up until Jan 2009, I would faint a couple of times a month and would get over the episodes. I went to this weight loss clinic that gave me meds, supplements etc in Nov 2008 - jan 2009 and I think that's what started my system failing... After going there was the first time I felt my heart stopping. I think the meds were the accelerant (?) I think is the word I'm looking for... that tipped off my system to make it start acting up Feb it started again and by June 2009 I had a ton of things wrong and in dire health but I've had some CNS/ANS issues since I was 9.

my cardiologist & EP said 10G for me also...and that I could never get too much salt; I didn't notice a difference though in the year I did 10G a day versus 2g a day now

I had the pacemaker put in for profound bradycardia during my TTT since I was in the hospital already and having an ICD implanted for my VT episodes. It helps my heart rate when it gets really low, but it doesn't quite help with the quick extreme blood pressure drops I have; sometimes 50 - 100 pt drops at a time. Good thing you do have a bit of a warning signal; make sure you keep with you what's wrong and what to do in case of emergency if you're out some where. I got business cards that said my name, emergency contact , medical condition and what meds I'm on, on the other side I put NOTE: I suffer from (NCS) fainting episodes, if I appear sick I may need to sit down, lay down or have my feet propped in a chair to help if i don't respond.

Thanks for the reply sj75 I've questioned this since I had it done and can't find the answer. I wonder what normal protocol is? does the 20 minute time limit sound right for a tilt test? some interesting things I've found looking for TTT protocol - My father in law had one done a few months before me and they gave him 5 doses of Nitro and he wouldn't pass; out even though he had fainted and was put in the hospital to find out why (he has CAD and had bypass many years ago). I don't think this is NCS - I'm going to a new dr June 27 so i'm going to ask...and def ask Mayo when i go for my heart realated stuff. I've had complete syncope since age 9, with and without arrhythmia's at the time of syncope but the majority of the time it's while I'm doing something... like fainting in school walking to class; during PE, summer camp when I was 9 was the first real episode I remember - I had taken a shower gotten ready and went to go back to my room and woke up being carried to the office and being sent to the ER.

I've fainted since age 9, I've fainted everywhere imaginable. Sometimes I know well before hand; other times it's lights out and I'm on the floor in a blink...times of being out vary and there is no rhyme or reason. Sometimes I get a pressure in my head, vision changes, nausea, weakness, I feel hot and cold all at the same time and then the room starts spinning and I may have time to quickly stop whatever I'm doing and squat, sit, lay down, other times I have no warning (like in my TTT) I just completely faint. Recently I've had the worst bouts of vertigo I've ever had along with my pre-syncope; but I don't fully faint since I have a pacemaker/icd. 2 weeks ago I fell into the side of the tiled bath tub getting dressed and my BP dropped too quickly and now I have a severely sprained neck and sore head. The only thing that has changed is about 3 months ago I went off Midodrine because my new insurance went up on the pricing and I can't afford it...my bp sky rocketed - 150/120 - 189/140 and they can't find out why. Nothing I've tried has helped with the symtpoms I have, luckily my PM catches my bp/hr drops, just sometimes a bit too late like 2 weeks ago.

For a dx of NCS (Neurocardiogenic Syncope) are there the same parameters with other ANS issues such as an excessive rise or fall as in bp/hr with PoTS and OI? If so, is it? >30 points like with PoTs? <20points like with OI? Also, for proper diagnosis, does that include when there is minimal increase/decrease during the 20 min standing time or does that include when they give the med like Nitro to increase symptoms? Here's my TTT results; which I've questioned - BP 126/79 HR 77 - Start BP 129/87 HR 101 - 20 min BP 137/71 HR 109 Nitroglycerin given - By minute #4 after Nitro was given, the patient had a syncopal event with no palpable pulse BP 97/48 HR 78 - supine state Findings: Profound Sinus Bradycardia; Classic symptoms of neurocardiogenic syncope with cardioinhibitory and vasodepressor responses (NCS & OI) My questions are related to why I was dx with NCS when my bp stayed the same during the 20 minutes, but I wasn't dx with PoTS even though my HR went up 32 pts because there are different reasons for syncope. I've suspected I had HOCM (obstructive HCM) which I finally found out yes I was dx with this back in August 2009 and just wasn't told. Patients with HCM/HOCM would react this way to Nitro and that would be an expected outcome; however my dr's said they had no clue why I reacted the way I did but that was days before I had a cardiac cath that dx the HOCM. I called Mayo Clinic here in Fl to see one of the heart specialists so I can get a 2nd opinion, what questions should I ask about NCS/OI so I can make sure to ask when I go.

they said it was probably ANS issues and my system worsening quicker than anticipated and hitting my head caused some bruising and pressure that will go away...if it keeps on I'm to see my neurologist...another thought was there was a virus in my inner ear

sorry to post so late I've been in the hospital today...no blood on the brain thankfully but my ICD did pick up some weird strong magnetic interference on the day I had the episode and in bed all day - they have to find out why so I'm set for more appts with the EP dr 's think it's just worsening of my ans dysfunction and I had a bad bp/hr spike since my bp's been riding roller coasters without me lately.... they didn't understand alot about ANS issues but at least knew what HOCM and NCS were and asked me a ton of questions and said obviously me being the patient have learned alot from the dr's and knew more about my condition than they did...the hospital didn't even have Midodrine in their systems and it's one of the top rated in the state; but they put it in there for me or the next patient who comes back in with it. thanks for the responses, Im just glad it's not what the dr thought it was =)

I know all of you will probably understand this...I am SO sick and tired of being dizzy and lightheaded and falling into things; one day I'm going to fall and not get back up. I'm afraid I really injured myself last week. I had a major bout with vertigo for 3 or 4 days starting last Tuesday; Wednesday I could not even move my head w/o everything spinning out of control and making me sick. I should be used to this it's lifelong thing for me but this episode was very extensive and lasted days whereas most times it's gone within an hour, goes away; comes back etc. With NCS I'm pretty used to fainting, near fainting, dizzy etc After the few days, I started feeling better and then had a really intense - no warning episode last Friday and fell into the corner of the tub (tiled) bending to get dressed; I know better but was in a hurry. No full syncope but more of a quick "black out" feeling and remember smacking my head pretty hard bp/hr went crazy low. I had nausea and vomited once about an hour after, a horrendous headache, very painful pressure all over my head and ringing in my head/ears. I waited to go to the dr a week thinking I'll feel better but the pressure, pain and ringing in my head/ears stayed and I've been extra tired and "cranky" for the past week just not feeling well I went to the dr who said he thought from the exam and testing he did I may have blood on my brain and needed to get to the ER. My reflexes were slowed, but that's normal for me, strength and muscles lax and very weak but this could jsut be from my condition worsening over the past 2 years. I'm not sure exactly what is blood on the brain and how serious is it if I don't get a CT (cant have MRI due to ICD implant) to check. The ringing in my head/ears and pressure in my head is what's bothering me, couldn't that just be from whacking my head so hard on the tile and will get better? not sure if this makes a difference but my bp was up today even more than normal @ 189/140 - last week it was 155/115 but it's been high w/o Midodrine for about 3 months and they don't know why - it stays 90/60 even with meds; which is scaring me makgin me think something else is going on. I have insurance but I hate spending so much money to be put in the hospital just to check and be told I'm fine. btw; off topic I wanted to let everyone know something about disability - I saw an attorney today who took my case! yay finally after 2 years...he told me something very valuable - don't ever see a nurse practioner (sp) NP for your care; their word has no bearing legally on anything in court, so make sure if you're going to dr's you see the MD's DO's etc.

This cracked me up.... even though it is VERY sad that a doctor could even come up with it. I get red and hot with POTS so I wear foundation too. I must be OK!!! GOOD TO KNOW! That's in my all time fav's of the dumbest things dr's have said to me...I laugh when I put on makeup now and say there; I have to be ok I'm putting on foundation.

so sorry you and others are going through this...I know how you feel; I'm going to a psych dr in a couple of weeks I just can't handle it any longer and it's affecting all areas of my life and I'm really afraid because my marriage has suffered greatly. take care and hopefully you'll get some help soon

I don't have pots...or at least I haven't been dx with it yet...been dx with many other things such as NCS, OI possible MSA, PN and suspected many other things and the "unknown" disease of well you don't look sick - that's great right? I had one dr tell me not long after surgery i couldn't be THAT sick because I put foundation on to go out to hide the redness from what my neuro suspected was Lupus; I didn't want people staring at my face it was embarrassing; I quit caring after that - it took 2 full min to slap some liquid stuff on my face - that makes me NOT sick? lol I've seen so many doctor's it makes my head spin, I've been told by every one my case is far too complicated and complex for them to deal with and there is nothing else medically they can do I just have to learn to live this way the best I can...then charge my insurance an arm & leg and send me out the door; pawn me off to another doctor or facility like vanderbilt...yeah i can go there but who's going to treat me on a regular basis? then my latest was the EP said my malignant heart arrhythmia's was caused by ANS issues...yet couldn't tell me what it was called and I can't find what would cause it and I just can't wrap my brain around that diagnosis... I think all the time did I do this to myself, did i make myself worse by something I've done or not done...certainly there has to be something or I'm crazy

ahhh glad I posted then, I'm going back to the psych dr in a few weeks so I'll ask about another SSRI or go back on Lexapro longer and see if it helps; I would think dr's know this but I'm finding patients know more from experience

thank you =) I'm going to check out the link now but I think I'm going to call and at least see what ANS issues they can diagnose and what test can be done at that facility.

Has anyone been to Mayo Clinic in St Augustine FL? If so, did you like the dr's - which one? did they listen you like you thought they should? Are there any pro's/con's to going to Mayo versus Vanderbilt? I'm having such a rough time trying to decide what to do. I've been referred to Vanderbilt but told by dr's here in FL that there really won't be anything else they can do for me even if I do go. Mayo clinic in FL would be easier for us to go to, but I remember reading there wasn't as much autonomic testing done there - I wish I could remember what couldn't be done? I'm such a jumbled mess of so many different things going on it's confusing even to me. What I'm hoping to get out of going to Vanderbilt or Mayo is some answers; hoping maybe they will find something the other doctor's who have seen me have missed. Also, does anyone know of what disorder would have malignant arrhythmia's (polymorphic ventricular tachycardia) that are associated with ANS issues? The EP I saw last from the Univeristy here said he felt like that's what mine were; but I can't find that info and won't see him again for 2 months. Thanks for any help anyone can give me.

why do some people feel like your friend? I've heard that but let's be honest...doctor's are overworked and tend to stereotype patients....esp primary ones - they have to take on 10 times the amount of patients than our other doctors...some specialists have a "God" complex such as my first EP and no one questions him...until I did and I've kept on questioning him because I know my body and I know something isn't right. My primary even though she is great won't do my Free t3 panel for some reason, even though back in 1998 I was dx and treated for hypothyroidism...March 2011 she did my panels and found my TSH and T4 to be off but waited on giving me meds due to my heart problems so when she refused to even try meds for 1 month to see if I would feel better, I went around her and made an appt with an Endocrinologist to get to the bottom of my problems. I guess she got her toes stepped on by me taking a proactive role in my healthcare and refused to even send my blood tests to him, but I'm tired of being sick - I need answers and treatment. keep being your own best advocate because chances are no one else will

Thanks for the info Sami...I've tried just about everything else and nothing works...I read this and I'm going to look into buying one next month.

I've had them also for the past 2 years since my surgery...meds, fluids, salt nothing has helped so I sleep with a fan beside the bed even in the winter which helps some but like last night I woke up with my feet freezing and my hair plastered to my head sweating like mad lol I keep thinking it's hormonal?

I think it has something to do with the mitral valve but I'm not too familiar with the terminology just call and ask the dr's nurse what it means if you can =) looks like you have some small leaking in valves which is normal aging most likely and they won't do anything until it goes into the moderate-severe stages...all of my valves are in the mild-moderate stages

I took Lexapro for a month or so for depression and found it did nothing for me.

I feel like I'm playing musical doctors...my ep's office called to tell me I should go back to my original ep for problems with my ICD and he didn't feel he needed to treat me again. I keep hanging on to hopes that I'll find someone who understands my quirky system; made an appt with another cardiologist with 10 dr's in it...maybe one of them will know about ANS issues

I think we all go through this or anyone with a chronic health problem does, those around us probably don't understand. I've said to my husband and children more times than I can count - I didnt ASK to be sick and I have to deal with it the best I can, which really depends on the day. now how they deal with me being sick leaves alot to be desired and only adds to my problems Sometimes my husband can't handle all my health issues and I've told him he needs to think deeply how he would feel if he were trapped in a body like mine. I can't drive, can't go anywhere on my own, can't sit outside in the sun or heck even take a shower alone; what does that make me feel about myself? pretty crappy that age 42 my body decided to completely fail even though I had been sick off & on for many years before. I have to take care of my 2 younger children even on days when I can't get out of bed, dealing with an Autistic child is hard enough but the past 2 years have been pure misery. It's like no one understands in my world and expects so much out of me; then i do stupid things and have to stay in bed days or crawl to the couch or kitchen just to make food. It's frustrating and I keep saying - one day I'll get a therapist to talk to; but when? I'll never know but I know that's what I need to do. Talking to someone who will listen unbiased may really help for any of us suffereing with health issues.