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Jackie

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  1. Jackie

    PSVT

    Haven't posted for a long time but I can say that when evidently my "POTS" flared in 2003 I was first having sinus arrhythymia and tachycardia and only a few months later after being given a dose of Lexapro did I then progress to PSVT which was very uncomfortable and did not come and go (at least it didn't feel like the irregular rhythm ever stopped from the time I took the Lexapro to the next day when I went to the ER to the time I had to wait for my followup visit with Dr. Grubb) so the "paroxysmal" part threw me too...it certainly didn't just start and stop for seconds...it was persistent....it continued for days unabated just the same as it felt when it started and just as the tachycardia previously had for weeks and weeks until I finally could follow up with Dr. Grubb who finally gave me a beta blocker after I had been tachy for 4+ months with a 30-pound weight loss. It sure felt scary but evidently they didn't think it was a problem. I, maybe like you, was thinking what next? First this rhythm and now that rhythm! Please can somebody just give me something to slow my dang heart down already! It was the longest wait of my life being persistently tachy every day for months (except when sleeping)...I was truly worn out physically, emotionally, and spiritually...the beta blockers kinda' suck but I sure take them...no fast rates here! I just wanted to relate to you in how scary it feels but from my understanding it isn't much different than atrial tachycardia in terms of seriousness except it is originating in the ventricle vs. atria (if I remember the correct explanation...pretty much what everybody else has said here).
  2. I would love to know the answer to this one truly. I get a rash on my palms some months before my menstrual cycle. It consists of fine bumps in clusters that are itchy and they burn. When it has been really bad it hurts to use my hands...most times tolerable but annoying. It doesn't happen every month but it is always cyclic and coinciding with my period and those are the periods where I feel very symptomatic and have that horrible feeling in my head and cannot think straight. I have had these symptoms for a few years even preceding the time I got really sick last year and diagnosed with POTS and OI and am still on the same meds since dx and nothing different. I'm functioning for the most part but nothing has changed these symptoms and nobody has offered any insight into them (especially the rash) so I just figure whatever it will go away like it usually does sooner or later but it does make a person curious to know the connection. It has to have something to do with hormones or my immune system I thinnk but who knows what. When I was really sick last year I didn't get the rash for months and then I went on the birth control pill for 3 months to help me get straightened out hormonally because I felt like hormones were playing a role and the rash came back. Now it comes and goes, some months I get it and some months I don't and I wonder if it is months I don't ovulate or months that I do and depends on what the hormones are doing or something. I used to come to this board before and I never heard anybody talk about rashes so it is interesting to see this post and I thought I'd share my stupid rash story!
  3. Ooohh I haven't been here in a long time and thought I'd pop in and see what is going on since I'm having a "dizzy" day...feel very icky like every month after my period (sorry if too much information!). But seeing this post really hits a spot with me! The nurses when I was in the hospital treated me really jerky and I have almost zero respect for most I've met. The thing is, I have 2 sisters who are both nurses and they at least to me do not seem like the general population of nurses out there but maybe because they have suffered some stuff in their life and therefore have compassion. I think suffering breeds compassion for others which may be a good thing that can come from it I suppose...just a thought. But anyway, I have a girlfriend that I used to be very close to..we grew up together, etc. I haven't talked to her in some years and has recently been in touch and she is now a nurse so a frequent topic of conversation for her on the telephone is to talk about her day at work and complain about all of her patients and insult them in various ways which is very offensive to me and gets me upset. I usually end up getting upset and remembering last year when I was at my worst and in the hospital and all the ways I was treated and she has confirmed that I was labeled because she knows "how nurses are" but says "why are you upset about this today?" Duh, because you are a horrible nurse just like them and listening to you makes me upset that people like you are nursing? I know that sounds harsh but some people are just not cut out to be in the healthcare field but are solely there for the money end of it and not because they give a flying hoot about people who are ill. If you ask me, only the old and babies (or a man) get respect and good care at a hospital (if you are lucky) and if you are in between somewhere in age (especially female) you better be near death or else you are just going to be something for the nurses to complain about or make fun of at the nurse's station...it's a sick mentality really and all too prevalent. Just thought I'd blow off some steam on that one!
  4. Well I too have read through the posts and it hits a nerve for me too because I have touched base on this issue before I think in some of my ramblings and feel I can understand what some are going through. I thought I was the only one and it was a difficult thing to share at the time. At my worst, I felt totally abandoned by my husband. He never slowed down at work or school or national guard and when I went to ER all those times he was either working or at school, etc. The couple times he was present (like when I was in the hospital or at a dr. visit, etc.) he just kinda' sat back like an observer and never spoke up on my behalf or said anything for that matter. I know it sounds childish but I definitely feel like I was in my worst state ever, very vulnerable, being treated like a nut and really needed this man to say "hey wait a minute...I know this person and she is really sick...something is wrong...she hasn't always been like this"......well dream on. Yes, I've gone through the resentment at times but I have finally come to terms with it I think and put it behind me because rehearsing what happened in my mind just is painful all over again. I believe he was doing what he felt he had to do (work and push himself as much as he could because financially we were falling apart when I was sick). But for me, I guess out of selfishness it felt like I wasn't important and work and school was an excuse and escape for him. Sometimes he would come home and carry on and say horrible things like "how many times are you going to go to the hospital before you realize what you are feeling is not happening" (i.e. palpitations, etc., because the EKG was always normal) well, if sinus arrhythmia is normal and paroxysmal atrial tachycardia is normal (which I know they consider these rhythms benign they feel horrible when they are happening). I touched base on it a little at my appointment with Dr. Grubb when I told him my husband does say he believes there is a physical component to it as well as mental (I think he thinks it is more anxiety than anything though) Dr. Grubb said well, wait until he gets sick. Overall, I have a wonderful husband. He is a hard worker and faithful and my best friend but I'm sorry I will never forget though I have forgiven him but I do feel he was not there for me when I needed him the most. Sure there were times he held me and comforted me but a lot times he was just plain mean and angry that I wasn't just snapping out of it. Those months I was at my worst last year were definitely just like the movie Groundhound Day...I've used the same analogy...but you know what finally I've made each day a little different and with medication I've been able to completely break that repeat cycle and that everyday is the same and I can't function nightmare is finally over. Do I struggle still? yes. Am I 100%...I think no but I'm definitely better. So now the expectations are high because most days I do pretty well considering so when I have a bad day or a few for that matter and don't work as much or something he still might make a comment like he did one day when I felt bad and just couldnt think straight and was upset that I didn't get my typing done that day and he said "at one point did you not know that you had to work"....that one hurt too. Anyway, I just wanted to say that I'm 37 and my husband is 38 and we have been together 6 years and married for 2 so I thought that was why maybe it has been harder for him to understand because he didn't know me when I was in my 20s and going full tilt. I think I've been more symptomatic since my late 20s just before we met and so he has only seen me with less energy, always not feeling well in some way, and not having all the energy to do things like most other women my age. Who knows...I know I wish things were different and that I could be different but this is my reality and I am learning to deal with it and live as best I can in spite of it. On one side like I said I do have some resentment for his lack of understanding at times but at other times I wonder how I would have held up in his shoes seeing him fall apart and every doctor saying "they don't know", "it's anxiety", etc. I was kinda' a basket case at the time because of being so scared and having nobody to understand or help and all the medication side effects, etc. He went through **** too just in a different way. All I can say is we weathered the worst of it I suppose or hope anyway, he does believe POTS is real, he knows people in my family who have symptoms too, and we are still together. He is not supportive of me being on medication like Xanax which used to make me always panic more too because meds are my biggest fear but I think over time he is coming to terms with it as much as I have had to because he sees that it does help. I feel I am getting better a little each day and hope to be medication free someday but if not believe me as I write this....I will do anything, go anywhere, and practically take anything if I must to never go through what I went through last year. I am afraid of meds but I'm more afraid of being too sick to stand up and live. So, kudos honestly to those with fantastically understanding husbands and understanding to those who have less than understanding husbands. I think I fall somewhere in the middle and mostly at the less understanding end during the worst part. They say men have their health problems later in life most of the time so we will see how they fair huh? Not that I wish anything on anybody at all but honestly men are bigger babies than women generally so I wonder how they will hold up when their genetics finally reveal what is lurking in their bodies. Lucky for them they will have us and having gone through what we have endured we will know how to be there for them in the way they need hopefully and finally the last little light of understanding will flash on!
  5. I don't get short of breath unless I exert myself...but then again exertion for me is lifting anything heavy or pushing or moving heavy objects or sometimes just walking or standing a lot...sometimes I guess talking too much will even make me feel short of breath a little and dizzy. I know this might be inappropriate to post on such a serious subject here but I have to share a great funny story with you guys...at least it might make you smile..hey you have to take it where you can find it huh?! Well, I purchased this beautiful quilt at a church-owned shop that kind of sells new furniture, old furniture, estate sale finds, and department store returns, etc. Well, I found this beautiful rose quilt, major king size beauty from JC Penney for only 19.00...the deal of the century right?! Well, I just am not patient and as soon as I got it home I tried to get it into my washing machine first thing (because yuck well it wasn't dirty but still)...so anyway, my mother tried to tell me it was too large to wash in my washing machine but did I listen? Ummm, no...I wash all my comforters in the washer no problem. Well this cotton corded thick mammoth thing was a whole new experience. I managed to wrestle the dang thing into the washer realizing halfway through that it wasn't going to fit but after having it half in and soaked I was intent on finishing the job. I got the thing in there and the washer started agitating...okay fine I thought and smiled. About 2 seconds later the washer tied up and stopped. Great! All I could do was pray that I hadn't broken the washing machine. It took me no less than 20 minutes to pry and wrestle that 100-pound soaking wet king size quilt out of the washing machine and when I was done I thought I was going to pass out and was breathing like my 73-year-old father who has COPD (gasping!), soaking wet, with sreams of water all over the floor. I decided to wait until my husband came home to take care of it so I bundled towels around the quickly leaking laundry basket I had it in and prayed for the best. A couple hours later, my husband wasn't home yet and realizing how late it was getting (about 8'ish at night) and realizing laundromats probably are closed, I dragged this laundry basket into the bathroom (yes at 37 with osteoporosis this was a major achievement for me) but I was determined once again and thought I could wring it out in the bathtub and put it in the dryer! Wrong! I got the thing into the bathtub and I'm wringing, and I'm wringing, and all the water I wring out of one part just soaks into the other.....totally exhausted and winded at this point I haul the thing out of the bathtub and into the laundry basket again and drag it back into the laundry area when my husband comes in from work and calls out to me...I could hardly answer him I was so short of breath. I walked into the living room and fell onto the couch gaspting with my heart pounding like I ran a marathon and very concerned he sat down next to me and said "what is wrong?" this frightened look on his face and I gasped out "the quilt", "the quilt"... What a riot! Needless to say I will not be attempting to wash that thing myself EVER again and we were up until midnight driving around town to find a laundry mat that was open and wash and dry the dang thing. That is my shortness of breath story of the day and the story of the 19.00 quilt "bargain" turned nightmare!
  6. Thank you Merrill...that does ease my mind. It doesn't make it any easier to accept but I'm glad I'm not fruit loops. It is imazing to me how complex the mind and body is. Thanks for your support and suggestion! I too just try to get my mind on something else. Like I said it does seem to get worse with my periods I think too so it makes me wonder sometimes if it will go away after menopause or if menopause will be like a permanent state of this crap...I'm hoping and praying for the former! I think there may be something to this exercise thing too because even though house cleaning isn't exactly exercise, I was really going at it for about 4-5 hours the other day, washing curtains and walls, sweeping, mopping, etc. and really sweating up a storm and when I was finished cleaning and took a shower I actually felt tired but satisfied and relaxed also so I think my goal is to start exercising at least a few times a week like Dr. Grubb suggested (I've never been a person to sweat that much actually but WOW with activity now I really sweat so that is different too!) but it did feel good so anyway thought I would suggest that for others (i.e. something to that natural endorphin release thing but I'm sure all the runners and stuff here already know that...I'm just not exactly what you would call an athlete!) Thanks again...it does help to know I'm not alone because that was a hard question for me to ask.
  7. Danelle: I haven't been back to the forum until tonight and looked up your post again. Thanks for the support on the Dr. Grubb/Xanax issue. I do have a lot in common with you. I am 37 also! I saw some other posts by another patient of Dr. Grubb's being referred to a psychologist (Ken Davis I think the name is) and I might try that also because he referred me to him too (wonder if we had appointments on the same day!) but just wonder to myself if I will get worse from dwelling on things and talking about them than I do trying to ignore them. For the most part, I am doing much better (baseline crap like before I got "sick" last year and was diagnosed with POTS) and usually take the meds and forget it but I do have a fear of medication and usually around the time of my period I start getting a little obscessive about things and I start freakin about the medication again. So, I tell myself it is the "thee old hormonies" and it will go away and it usually does. All my symptoms get worse premenstrually and during menstruation and sometimes for a little while after too... This is a very scary question for me to ask but when people talk about panic attacks are they always just physical symptoms or do they have what I call mental panic attacks. For me sometimes I have scary thoughts/intrusive thoughts about unsettling things (like something I saw in a movie or something horrible I read in the paper or afraid of stupid things or imagine having a car accident, etc....sometimes just this strange fear that I'm going to lose control but do what or why I have no idea...it is bizarre)...is this part of a panic attack sometimes or am I really nuts? I had "panic thoughts" post partum but was really young and just ignored them and never told anybody and eventually they went away (like afraid I would drop the baby, etc., ..just stupid stuff)...now here they are (i.e. the panic attacks) and they started after starting medication (Ativan) from the ER before I was diagnosed with POTS. What the hospital called panic attacks (tachycardia) make me feel a tad unsettled physically because my heart was racing but totally not the same as what I call panic attacks (i.e. physical senastions vs. mental panic and physical sensations)...like a surge of adrenaline that makes me feel like I need to run around the block or something....I guess this is one to ask the psychologist if I go...I was just curious but really afraid to know the answer actually..geez maybe I'm the only one! I wonder if it is hormone changes too since the last time I had problems like this it was post partum but I was 16 years old. No wonder I never had anymore children. Wonder if it was POTS then since everybody seems to say they felt worse or were diagnosed after childbirth? I have always had a higher pulse and lower blood pressure but besides the post partum panic I did relatively well until late 20s when I started having some dizzy spells and persistent fatigue, but still not huge symptoms until 1 episode 3 years ago triggered by steroids and then last year with symptoms unabated for a few months, extreme weight loss, constant palpitations and heart racing, extreme fatigue and muscle aches, nausea..just the whole deal. I truly thought I was dying and treated totally like a nut at the hospital. Anyway...enough of that. I just thought I would note that we have a lot in common including our age and post my scary question about the panic attacks. P.S. I'm glad the Klonopin works for you. Dr. Grubb had me try it but it made me feel like my legs were paralyzed but my mind was racing. Then again, they had me trying so many things...Ativan and Attarax, etc., I think my body was just reacting to EVERYTHING at that time. Oh how I hate medication....I just bounce back and forth constantly...well, if I need it and it helps well then fine, but then I think, geez I hate feeling like I need something to function...don't want to "need" anything...it is a hard adjustment. Never thought of it until it happened to me...medication I mean. Some doctors compare it to insulin for diabetics, etc., but I'm sorry I'd have an easier time accepting something like that than one that affects brain chemicals. Anyhoo...
  8. I guess I'll add my 2 cents. I really, really like Dr. Grubb and I have faith that he is very good. I have had 3 appointments with him total and the first one was diagnosis and I was too sick to discuss anything with him, didn't get the education, etc. The second appointment was just as bad...having a reaction to Lexapro...no help there..atenolol and Florinef to try, f/u appointment for 6 months later and nurse never returned call about medication question so I never started the Florinef. Third appointment, 6 months later for followup cancelled. This was in April of this year so I decided to put everything on the back burner and keep taking the atenolol and Xanax and live with it the best I can because I need to work more and make more money and don't have time to try new meds and risk being unable to work. Office calls out of the blue last week and says he can see me 2 days later on Friday 28th. Okay. So now I am all worked up gathering my records and questions, etc. Went to appointment. Appointment at 11:00 a.m. I arrived approx. 10 minutes early and 2 hours later I think I made it into the room and sometime around 3:00 I think he made it into the room to see me. He was interrupted by his pager at least 6 times and left the office to make phone calls. I had so much to ask him and barely got through questions I had from 6-9 months ago let alone my current questions. My biggest problem is fear of medication but I've adapted and most of the time can relax about the Xanax and deal with it. What does he do? He makes statements about Xanax being addictive, etc. and just gets me more upset. BUT he says medication is sometimes necessary in order to help a person get into a place where they can do other things....namely recondition and "reset" their system. So my prescription this time is aerobic exercise 3 times a week and a new folic acid supplement he wants me to try. I asked for support hose rx. and he obliged. He did help confirm the confusion between my POTS diagnosis and the jerky psych guy who attributes it all to anxiety so that was a plus I suppose. He also referred me to a psychologist who deals with people who have chronic illnesses which may be of benefit and which may lead to a new psychiatrist if I feel I need one for meds or even a new PCP which I defin. need. These were pluses but overall I went home totally upset the way I usually do after an appointment because I've gotten to where I absolutely hate hospitals and doctor's offices, etc. and had concluded in my mind to just put all this on the back burner and get on with my life however altered the quality and I felt like this appointment was so ridiculous because dredging everything up just gets me upset and makes me think of all the things I still to this day have questions about and they are still to this day unanswered but I got to get upset and think about them all over again and go to a 6-hour appointment to get less than 30 minutes interrupted with somebody and come away with no more info than when I went. Such is life I suppose! I guess I would recommend keep the appointment but I'm finding at least for me that he is not a doctor to manage things so find a backup doctor for the months in between appointments. As far as getting your most important questions answered at the appointment I don't know what to say...I had everything typed out and organized in sections, etc., but never got through them, we got sidelined on questions not as important and with the interruptions my focus went right out the window. I would recommend handing him a list of your questions FIRST and let it go from there instead of trying to hit them on your own like I did because like I said...I got 2 questions into the list and he started talking about things and everything went out the window and I never got to ask the important stuff. I cryed on the way home the way I ususally do after any appointment anymore and was upset for 2 days. Overall though, I choose to overlook the negative and see the bottom line...he said I "can reset my system" and maybe meds won't be necessary for the longterm. So, that is my goal to focus on in the meantime I suppose...trying to help my body rebalance itself. I wish I lived closer to other specialists myself. I live right outside Toledo where Dr. Grubb is and it is of no more benefit to me than people who live in California!
  9. Paige: What type of television shows you watch? Give me a break? How in the world is that relevant to anything? (To give them something to think about I'd write court t.v. 24/7 haha!) I'm sure they have a highly paid and educated team to psychoanalyze your t.v viewing preferences! I'm sure it is very telling if you watch soap operas, survival shows, the sci fi channel, medical miracles, history's mysteries, court t.v. and throw in some religious programming just to mix it up a bit! Geez, you're not crazy though and don't let them make you feel that way!
  10. Sick as it may be I would have just went along with her about the depression statement (not that I wouldn't be upset of course) but if you can believe this my sister was working as an RN and was diagnosed with MS but her disability was approved based mostly upon her emotional responses during testing, etc. I think. (like I guess they were seeing the depression and tearfulness, etc. - She was on mega industrial strength steroids at the time and her mother-in-law was dying of cancer when she had her examination and the examiner wrote in her report "frankly hysteria comes to mind"). She did get approved for disablity though. My sister was so upset when she saw the report that there was so much more emphasis on her state of mind rather than on her state of physical health (right-sided weakness, focal seizures, burning, tingling, muscle spasms, optical pallor, etc.) Another doctor told my sister not to worry that she has seen people up on roof tops shooting at nothing (much worse than simply being tearful) on much lower doses of steroids than what they were giving to her to slow down the MS and not to worry about the report. I don't get how the system works. Go figure! You have MS but don't be on an antidepressant or anything like that because then the mental thing comes into the picture but this actually usually gets approved faster vs medical it seems. I realize it sounds horrible but if they want to approve it for depression fine....you actually might be more likely to get it sad to say vs. POTS (but don't know for sure). geez I hate the whole medical system myself, doctors, insurance, ignorance, etc. I can't imagine what this process is like for you but hang in there. As a side note I wanted to add that my brother was injured on his job some years ago (ran over by a forklift). Do you think he got SSDI? No. I'm really going over the line saying this here but do you realize how many drug addicts and alcoholics get SSDI? I think it is absolutely ridiculous myself.
  11. Don't get rash on my chest that I have been aware of but do get this strange rash on the palms of my hands premenstrually (only pattern I've noticed) but it isn't every month...the months I have the rash though I feel much worse and have that feeling of being weighed down by gravity or like my head is a balloon in a more pronounced way. Have no idea what it is and have had it coming and going for at least a few years now. I told my doctor next time it popped up I'd come in and show it to him or at least take some pictures so maybe they can figure out what it is. (Never thought of a histamine surge, but you say MightyMouse that the rash would be persistent which mine is not...it usually clears up after my period or sometimes stays the whole month. I defin. think it has something to do with immune system and hormones but what?)
  12. I agree with all above...no way are you a wimp and consider yourself blessed enough to at least know what is causing the POTS though I realize it is little consolation without a "cure". I don't think your symptoms sound unusual for POTS at all..maybe just more extensive because of the damage to your artery causing you to need so much more medication, fluids, etc. than some of us. Chin up...you sound like you are coping remarkably well given the circumstances! By the way welcome to the forum!
  13. Hmm...I voted yes on my mother's side but when it showed the poll results it showed 0 for any votes on mother's side...anyway, the answer is yes...on mother's side!
  14. I seem to have markedly increased anxiety around the time of my period which I have never had this bad before all this POTS started even though I always had PMS...it makes taking Xanax feel like drinking a glass a water...no effect. I also sometimes feel jittery inside in the mornings after I wake up before I start med loading (.25 mg Xanax and then 25 mg of atenolol) and that usually helps...sometimes it feels like my spine is tremoring or something...too strange of a sensation to describe almost like electricity running down my spine and this is usually more pronounced around that time of the month also. I have also noticed some what I believe would be called intention tremors because it only happens with movement (vs. stopping as the one person said above). For example using my hand to apply pressure my finger will shake or sometimes my legs will shake after exertion. You are definitely not alone. The one thing I have heard of though is of people having a delayed agitation thing from antidepressants (i.e. days or weeks after starting or days or weeks after a dose adjustment). I would discuss it with your doctor. Chances are though it is the old "hormonies" making the anxiety worse though but that is just my 2 cents based on my symptoms. I hope you feel better soon. Sometimes it takes up to a week after my period before my body settles down again. Hang in there! I know it ***** and I tell ya' I never wished I was a man in my entire life but lately I'm starting to wonder why woman have to have all these hormone problems, etc. Geez the things we go through...they have such a "wash and go" lifestyle...must be nice!
  15. You will never know unless you try. I know it is hard, but you say you are doing better right now, playing softball, etc....then go on with things and don't worry about the "maybe this and that". ...I do know how easier said than done that is but still. Not everybody ends up disabled from this...many people's symptoms are sometimes mild and they vary so much that you may never have much trouble. Maybe you will never feel worse than you do now. Worse case scenario, if you did, maybe you could be in practice for yourself and limit your work hours (just a suggestion?). I wish I had the drive to do more than what I'm doing right now myself so don't get me wrong...I'm not preaching...but if there was something I was planning to do and felt like doing it at this time, I would go for it and not let what might happen down the road limit my future. You will be alive years down the road with or without a law degree. If it was my life dream and I was your age (and able to play softball! or felt reasonably energized and focused) I'd still go for it because you may limit yourself simply out of fear of something that may never happen. (and many people may think my absolutely terrible for saying this but if you finance tuition with student loans and end up disabled they are dischargeable under those circumstances).
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