Jackie

Thansk Runnergirl for the suggestion. Darn scared of SSRIs I am but we will see what the new doctor says next week. I'm really hoping for a positive change. I still have hand/feet sweating periodically and/or cold hands feet sometimes even while they are sweating. I still have some anxiety and panic-type symptoms but today my BP was running low again about 80s/50s (it is that time of the month though so I think that is complicating things too). I just feel blicky (is that a work?!). So far as I know, cutting an unscored tablet in half will not definitively give you half the dose as the medicine is not evenly distributed in each half but if it works for you guys then why not I say! I have a pill cutter myself for my scored medicine. I wrote down the name of that beta blocker betaxolol and am going to bring that up to the dr. too. I wish I could get brave enough to try the SSRIs again. I think I need something more balancing and I hate to say it but I feel like such a pill popper having to cut these darn Xanax tablets and take them 5 times a day...it's really hard to space them out without feeling too relaxed but I've tried going down to 4 and ended up going back to 5 (.25 mg). It honestly doesn't change any of my other symptoms though (maybe helps with the IBS) but I still have a bunch of other symptoms. So much for it is all anxiety huh?! If that were true, this should be the wonder drug...unfortunately not. Please keep me updated those of you on SSRIs...I'm just so afraid of going through those reactions again but we will see.

I've very interested to find out that there is a lower dose of atenolol than 25 mg. I take 25 mg once a day in the morning and frankly I think it is too much and would probably do better on 12.5. I have never known it comes in 12.5 and was told 25 was the lowest dose. I will defin. put this on the list of things to ask the new doctor next Tuesday. Thanks for bringing this subject up. (Oh and for me, I also take Xanax because I couldn't tolerate Ativan or 1 dose of Lexapro and now am afraid of everything even the Xanax yet I keep taking it for now) so I can defin. relate also to the posttraumatic thing mentioned below to med. side effects. From everything I've heard, many people take both and there shouldn't be any problems...I would start one at a time though maybe so as to know what is causing what if there are side effects....just my opinion though. I wish you sister luck and keep us updated.

When Dr. Grubb rx'd Florinef for me he also rx'd potassium and I've read that you should take supplements with Florinef. However, I had potassium problems when I got sick with the POTs flareup with electrolytes out of balance so maybe that is why. Also, I never did try the Florinef after all so this whole point is moot except to say he rx'd it for me with the Florinef. Now the B6 I never heard of. What I have read that is interesting is that ibuprofen of all things depletes the B vitamins and when I was in the hsp. they found my folic acid (one of the Bs can't remember) extremely low. That was news to me and yes I've taken a lot of ibuprofen for aches and pains so I'm on Foltx when I remember to take it which is just a B comlex supplement by rx. I'd certainly ask the doctor. Nina is right about too much potassium too. That is what always scared me about taking it when my e-lytes were out of balance but every doctor insisted if your have good kidney function it is impossible for your body to hold too much potassium...but with all the things my body should do or shouldn't do and did or didn't do anyway I worried about it anyway.

Oh yea, I also wanted to add that my brother-in-law has atrial fibrilation...they cannot find an underlying cause and he has been through 2 ablations that I know of and the last one was pretty extensive of many sites of heart tissue and he still has it and is on meds. Ablation doesn't always work I guess is my point and that is maybe why yours didn't either. Also, POTS in and of itself means autonomic nervous system instability...this means the system is unstable...it can do whatever it wants up down all around the spectrum...unstable. Some have fluctuating symptoms and some have the same symptom complex. I'm just saying this because your remark about whey aren't there all these people out there trying to find out why they can't stand up reminds me of how I felt last summer...I was out there trying to find out why myself...I mean I could stand up but it was extremely fatiguing to walk around because my HR was so high. I guess what I mean to say is that there are people out there trying to figure out why they can't stand up or clean their house like they used to or walk any distance or feel so bad all the time or feel like they are going to pass out or pass out who are rejecting mental illness diagnoses as we speak....they're out there...there just aren't enough qualified educated physicians when it comes to this disorder/dysfunction but that is beginning to change finally thank God. I'm just saying maybe you do have IST or POTS or nothing at all. Thank God they didn't say just anxiety since you are female I take it (?) It is just scary at the number of people mistreated and misdiagnosed. I pray you get correctly diagnosed and soon because I know the not knowing is the hardest part. I'm like you in that things have to make sense. It has been a difficult road so I know and I'm sure we all do what you are going through. Just thought to add these things..sorry.

This blows - welcome to the board. I just wanted to throw in my 2 cents I suppose. I agree you should trust your doctors, but in my experience I've not had any that could make any sense out of it and was diagnosed simply as anxiety (with a nod to maybe IST at the very beginning). They could not explain my excessive thirst, urination, tachycardia at rest and worse with upright posture and movement, electrolytes imbalances, etc., etc. by anxiety in my opinion. My specialist, Dr. Grubb tilt tabled me and diagnosed me with POTS and different autonomic instability problems run in my family running the spectrum of those who pass out, those who don't, those with high blood pressure problems, those with low blood pressure problems, those whose BP and HR crash when they pass out, and then those with increased HR to maintain BP like me. Many many doctors do not believe in POTS/NCS, dysautonomia or even care to know anything about it to realize it is real. That is why you should be very careful to be fully evaluated so as not to get misdiagnosed. Again, like others said, not everybody is severely debilitated or are at times and at other times they function better...hence, autonomic instability. Many people are misdiagnosed...me for one in the beginning as anxiety and my mother also for years with chronic fatigue and anxiety and still has not been tilted even though all her symptoms are classic POTS. I have a nephew who passed out since he was a teenager and now is married in his 30s and finally under the care of a neurologist who treats him for NCS...usually after he passed out (as often happens) his system would regulate itself back to normal and they said nothing was wrong with him for years...until he had an especially bad episode where it could be documented by EMS did they finally diagnose him...this took years. I am adamant that there are people out there suffering with a misdiagnosis or no diagnosis. It isn't as rare you some doctors would like you to believe. Look around this site! I wish you all the best. I'm wondering if it is possible that your heart rate is high all the time to maintain your BP as you mentioned that you have a low BP. So do I. I have always run 100/70s or thereabouts and have always had a high pulse in the high 80s and 90s...until one day...my HR shot up for no reason (except calcium...still don't know the connection) and persisted at rest sometimes relieving only to start again later or sometimes all day and always worse with standing and movement. My Holter showed a 24-hour HR range of 30 to 150+. I can only hope the 30 was when I was sleeping but I was told that was normal. Let me tell you, 150 doesn't feel normal to me and I think 30 is pretty low for a person like me who is not athletically fit. I hope you find your answers and know you will. Good luck and stick around for support either way. We are here for you!

I know it has been days but I just wanted to come back and thank everybody for their tremendous support. It never ceases to amaze me that people would take such time to comtemplate my stupid problems and give me advice and support. I truly appreciate it to so much. You are light when the days are dark and my reality check when things are confusing and I thank you. Things with hubby are much better as he finally got a couple days off in a row...and well after a row or two of us venting, we got back on the same page and things are just fine. I think we are basically both so overwhelmed with this, my time off work, our subsequent financial problems, and everything else...and reacting to the stress of it all. Also, not surprisingly, I realized I'm in my 7-day countdown to ye' old period again. The usual time I'm going to obscess over something if ever. Does anybody else get more emotional and more fragile health-wise and mentally before "that" time? Anyway, just wanted to say thanks and even though the PMS is raging, all in all I'm holding my own. As for the doctor, I watched this Christian program over the weekend and suprisingly or not so much so the message was forgiveness. Well, I thought I have no issue with unforgiveness so I might not get so much out of today's sermon. Well, lo and behold, by the time the message was complete I realized it was totally helpful and speaking again directly to my situation. Sorry, I'm a spiritual person! But anyway, the concept was that we sometimes block or lose our blessing/healing by not forgiving and the principles were interconnected and protrayed with an example of (my goodness my mind goes blank on the name of the person from the Bible) but he was "condemned" by the priests for having leprosy and was banished to a leopar (sp?) colony. When Jesus healed him, he simply told him to go and show himself to the priest and offer the sacrifice that Moses commanded. Well the point was, he had to get over his anger at the person who had "condemned" him and show himself to him (forgive him basically) and offer his sacrifice to the Church (it was protrayed as a monitary sacrifice anyway) and well it was just acted out very dramatically and was very touching. Others refused to forgive and go to the priest and they remained stricken with leprosy...they lost their blessing. It was an interesting interpretation/protrayal of this scripture. It helped me to realize though that we have to forgive others because holding onto that grief will only be a disservice to us and impede our healing/blessings, etc. For me, I'm not going to let my anger, hurt, frustration, or unforgiveness at his condemnation of me block my healing and blessing. Don't know if that helps anybody but it sure helped me. Thanks again for supporting me through a very dark day! I love you guys!

Thank God your treatment is falling into place so quickly and that you didnt' get the round around for long. I think you are well on your way to getting to the bottom of your true problem and it sure sounds like autonomic instability to me from everything I've read, all the people here, and my own symptoms and experience and dx. too. Good luck with the testing, don't fear the tilt table, and it sounds to me like you will be positive like me even without the injection. Everything can fluctuate so much I wouldn't worry about exact heart rate at exactly how many minutes, etc. The point is there sounds like there is instability and it will show up...everybody has it to a different degree and their bodies react to compensate at different rates at different times, etc. Keep us posted and welcome to the board!

I often feel better after a good cry myself (even though I get upset at myself for feeling sorry for myself). I don't understand the mechanism of action but it does help...maybe it is our body's natural release of frustration, sadness, whatever overhwelming emotion it might be. I have days like that and I abhor them. It is a fight on those days to raise my emotions above my circumstances and I do it by trying as hard as I can to take my mind off the way I feel. Music, a book, whatever I can. It doesn't always cure, but usually helps. Yes, I think the weather can effect us. Somebody mentioned barometric pressure changes to me recently and I've been meaning to start looking at the weather.com website and see if I notice any connection in the way I feel with this barometric changes in weather. Who has the time though? I'm in the process of documenting my symptoms every day for 2 solid weeks for my upcoming appointment with a new specialist...you want to get depressed...evaluate and focus on your feelings every day like that. Not that I don't do it anyway, but it is somehow more depressing to have to evaluate your every feeling and write it down. I tell you the only thing that truly gets me through the bad days is knowing there will be days I will feel better again and then I just ride it out until I do. You will feel better again too so just relax and ride it out...and yes have a good cry when you need to. It helps a lot too...clears the fog and brings things back into focus. I'm hoping your good day comes back as soon as possible! Keep us posted!

The only time I took prednisone was for an allergic reaction to antibiotics and I think I only took 1 dose of 40 mg and that was when I experienced my first episode of autonomic instability with tachycardia for almost 6 weeks. My system was obviously very sensitive to it. If it works for you though great! My sister has MS and has to take large large tapers of prednisone at times and she has sweating and some anxiety from it but for the most part she tolerates it because it helps her symptoms so much. If it helps I say go for it!

Well first of all the good news today is that I'm more at peace with things. I don't like it when I get that upset. I really needn't let things bother me so much but sometimes I guess I get worked up. The long and short of it though that hubby went to bed while I was working to get my transcription done last night so we didn't talk actually. I think he was afraid to approach me actually and knew I was stressing or I wouldn't have been working that late. This morning when he left for work though, as he always does, I was aware of him kiss me goodbye on the cheek. I know things will be fine. We need to talk and I do still have some feelings about what I think he thinks but I should also stop probably putting things there that maybe aren't. Now, to Tearose in response to your post last night...a couple things really stuck out: "Maybe, just maybe, you feel bad that you can't be as strong as hubby wishes". This is absolutely true. I'm afraid he'll get tired of me being sick and tired and find somebody who isn't. He says we will be old in rocking chairs on the front porch someday and that he has no desire to have his life without me. I guess it is my own insecurity and trying to accept myself and changes in functioning complicating my insecurity that all men don't leave. Secondly, "I don't need his approval because I am a complete person without him", this has meaning to me too, because I think I have lost my sense of complete independence that I once had and I feel the bond of the two of us being one. Maybe I need to be more independent thinking again, but then I think well if I make all my own decisions and go my way and he makes all his decisions without me and goes his way, what kind of marriage is that? Then you said "We must want to be together with our soul mate, not need to be". This resonates strongly because it was a major thing we acknowledged when we got together. He has children and I have a son, but together we do not have any children, we met later in life (early 30s) and we talked extensively about this both saying it was so great to be with something because we want to and not because of strings or obligations...we both agree that the "wanting" to be together is the glue of our relationship...there isn't anything preventing either of us from walking away except our love for each other and desire to be together. When you talked about the part where you sat down and told your husband what you wanted to hear and then he did and it made all the difference...well, I too have done that before and surprisingly I did feel better. I always thought before that that if I had to "ask" him to say it, it wouldn't feel as good, but it certainly did. I simply asked him to tell me "everything is going to be okay". He not only said "everything is going to be okay" he added "because we will do whatever we have to to make it okay". We hugged and I cried too. It was well worth the asking. It was all I needed to hear. I know in my heart I'll never leave this man and I don't truly want a life without him. Sometimes I guess it is honest to say I don't always like him and I'm sure sometimes he doesn't like me. I think people who met young and married young and stayed together have a major advantage in that they saw each other in their total vibrancy of youth....because sometimes I think, well if he had only seen me when I was 22 back in the day! He hasn't seen the change in my abilities and energy level. When I point that out he says it is just aging...well I don't think it is normal to feel 70 at 37! But anyway, I know we met at the right time in our lives and when we did, I could see that everything that had happened had been working to bring us together. I honestly felt like I knew him immediately, like where have you been all this time? We sat and talked and talked the whole night when we first met like we had to catch up on everthing to the point that we finally came together. I do believe in soul mates and I do believe in destiny. Thank you for helping me think of the sweet times. I don't mean to come across like he is not good at all...I mean just last week he brought me flowers for no reason. He just has a way about the things he says sometimes that make me feel bad. Oh men! Now for the Mrs. Doubtfire part it was a total compliment so I'm glad you took it that way! I just see you as this sweet little old English woman! I laughed so hard when I read that you said you are a tad bit cuter! I imagine so! Robin Williams in drag is not exactly what anybody wants to look like actually!! (though I thought he made a sweet looking old lady really!). Earthmother thanks and I think the live chat sounds great! Maybe we can all just sign up for instant messaging or something and meet in that kind of environment...it is totally free and easy to download. I am a little embarrased at being so upset yesterday but I think I posted before this has always been part of my personality...sometimes getting upset about something and it is hard and slow to let go...maybe I am mental in that regard..don't know. I just know by the time I was done working last night I was so totally mentally and physically exhausted that I went to bed late and woke up in the middle of the night completely congested and trying to go back to sleep my heart was racing and pounding but I fell back asleep all the while composing a not too nice letter in my head to the doctor and this morning I felt like I'd been hit by a truck! But...I've talked it out till I'm tired of talking and I cleaned the house am going to the bookstore and going to work later and tomorrow will mend things with husband since he will be home. I love Sundays...it is all down time! Hugs to everybody. I can't tell you how much you all mean to me. The truth is life is a trust and a trial as well as journey (borrowed from the Purpose Driven Life book I'm reading) and I find that to ring so true...thank God for the good days because they make the bad ones worth going through and thank God for this board and friends like you!

Between Denabob and tearose I don't know whether to laugh or cry. I will post more tomorrow...I have some thoughts about the posts I want to express especially to Tearose in response...my heart is touched so deeply...I'm just emotionally exhausted and finally got my work done. Tearose are you older? No offense intended please it is just that you are so wise and soothing with your words. It is like salve on my soul. It's like talking to Mrs. Doubtfire from that one movie. P.S. Thanks Lisa also...I think I'm on my way to a good doc...hoping anyway, next month. Afraid of Paxil, but we will see.....

Bless your heart tearose for being afraid. I really wouldn't be afraid of the test though because as Dawg Tired said it would just be electrodes...nothing invasive thank goodness but I understand the fear of the unknown. I think though honestly what is probaby bothering you more is what if anything it might show and I can totally understand that too. We struggle so hard to get one thing under our feet just to find there might be more. I myself am going to ask for an MRI too because I think I would like to know now if there is something like MS starting because of my sister. Nobody wants to have tests done but they are unfortunately necessary if we are to get any useful answers. I will pray for you that all results in good news and rebuke all fear from nigh your door! You will be fine! Be sure to come back after the test (Wed MRI?)...so we will look for update on Thursday...hopefully you will have some answers and don't be numb...be grateful you have an internist who cares to look to be on the safe side! What a wonderful concept for a doctor to actually do their job!!!

Good for you! It feels so good to regain something we feared we lost.

Thank you tearose. As for my "you're fired" speech, boy it was fun day dreaming today about the piece of my mind I would give him (as if I can spare a piece!) but in the end I actually don't think he would listen if it were in person, read it if it were in writing, or ultimately care and I'm certain he would write it all off to psychotic rantings. You are absolutely correct about the strength issue. As bad as I still feel, I've come a long way. Though I've ranted so today you would think I'm spiritually dead...I am actually feeling that I'm coming back from a literally broken spirit through my ordeal to a healing on the mend fighting spirit through the strength of my faith not in doctors and not in medicine, but in God. He is well able to keep that which we commit to him so I just keep meditating on that. Today, well, I just went off. Sometimes it gets to be too much and I forget to turn it over to him instead of letting it drag me down. I say again like I said before "that which doesn't kill you makes you stronger" and I'm finding that to be true. In the beginning I feared so greatly this doctor would turn me away because I didn't know what else to do...well the tables have turned and I'm quite pleased that I don't feel scared or worried at all at the thought of firing him and it feels good to be a position of strength and not weakness and at somebody's mercy. Jack is back! If my husband thinks I'm weak and wishes I was stronger, he better watch out for what he wishes for. I might surprise him! Are you sure I can't trade up to a better model though? But seriously though, in my heart I don't want a broken marriage and he does have good attributes and I am trying to put my mind on those right now instead of what is lacking. I do realize nobody is perfect and I certainly am not and yes I have sisters I share this with and they help. Women are more compassionate by nature I think...love to talk and good listeners too I think. I think the way you handle your marriage is envious. I should model it I suppose and stop seeking after what may never come from him. The thing is I guess, when I was younger (I was a single parent until the age of 28) I never thought I'd ever get married. I had no faith in men or trust at all due to various experiences. When I met my husband, the whole thing changed. I was strong and independent when I met him, but slowly having somebody there to actually share the load with I felt I changed and wasn't this die hard strong old person anymore and that I didn't have to be. Not that he would take care of me or anything like that, but my best friend and somebody to share my life with...and I let my guard down, broke down the walls of distrust and gave into love. Now I guess I just feel so vulnerable to what he thinks (whereas before I didn't have to worry about what anybody thought...there was only me) that I fear it may not be healthy. Is it normal to need approval or understanding from your husband? I keep thinking of this scene in the movie Terms of Endearment when Emma tells her mother that she is pregnant and her mother isn't happy about becoming a grandmother...and Emma says "If you aren't happy for me...I just don't know what I'll do..you have to be happy for me"...well, that is how I feel I guess, except "you have to believe me right? If you don't believe me I just don't know what I'll do (i.e. if you don't...my best friend and partner..then who will). Anyhoo, enough of that. You are all a treasure and you certainly truly helped me today. Sometimes I need a reality check...that is why I come here. Reality check, reality check check. I will be better tomorrow I know it. I just need to simmer down.

and merrill I'm defin. going to check out that book. Hugs to all and thanks so much!

Thank you MightyMouse, Michelle, Jersey Girl, Sue for the support and understanding. I realize fully my answer is to dump the doctor. It was upsetting and frustrating, but I've been there before with medical personnel as we were just discussing yesterday so I will survive and I will get over it. I don't know why I never cease to be amazed though...how many times do you have to subject yourself to it before you realize. The bigger thing though is if this is the standard we hold strangers to, should we hold are husbands/wifes/friends/relatives to any less standard? I can fire my doctor, but what do I do with my husband? I know I'm just emotional right now and it will pass and I'm sure I will talk it out to some degree with my husband and he will do the usual...retract what he said, apologize, or try to say that isn't what he meant at all, or when all else fails deny it and say I didn't hear what he said right...some crazy thing will be the explanation until the next time and the next time after that and the same thing..I've been down this road a lot with him lately. Counseling would probably be wonderful but wouldn't fit into his busy schedule. It is just a circle of a mess...he's working hard because I can't work as much, he's going to school to make a better life for us, etc., but yet there just below the surface I feel a little bit of resentment just beneath the surface that he is holding back that I'm not pulling down my half of the deal these days financially and spend too much time worrying about my health. Oh he will say the opposite....do what you need to do....pace yourself...take it easy...but his actions speak louder than words. The bottom line is that he is the kind of person who views illness as weakness and would work if he was hemorrhaging blood and he takes pride in that. Good for him. Stop holding me that standard though because I can't do it anymore. See what 1 bad doctor's appointment can do...cause your whole day to spin out and doubt everything darn thing on the planet...not only yourself and your sanity but your own marriage and future. I'll recover...I always do...the rest time will tell. I am going to lie down and regroup because then I have to run an errand, get something together for dinner, and work still today...house cleaning be darned today...I just don't have the energy for anything else. P.S. And I wanted to note that this is the first doctor absolutely who ever said that anxiety causes orthostatic hypotension...news to me. I think he's a quack.

Merrill - Thanks for posting. I do think on the surface yes that the positive point is that he called from work to ask how my appointment went. The thing is, when I tell him how terrible it was, to me anyway, it is almost like he turns it around on me...like in saying "I expected him to do nothing so he met my expectations" meaning the dr. and big deal. He has this habit I'm finding of doing this all the time. He will ask me how I feel so he can hear how bad I feel and then find some way to say something critical. I hate to say it or admit it to myself in a way but I guess it is almost to the point where I think he is honestly feeding on my weakness or something...like somehow hearing how bad I feel or how wrong something is just makes him feel that much stronger and better about himself. Not a good attribute and something that has revealed itself over time...he certainly didn't act like that when I met him! As for the theory of men and women being different and thinking differently I totally agree. I have pondered the theory of how men just get frustrated because they want to fix things, etc. and that could be true in many instances with men but when I apply it to the way my husband reacts it just doesn't fit. If he was worried about "fixing" something, which I'm not asking him to do, he would I think say something remotely similar to reveal that emotion. Not turn it around on me in a negative way. The bottom line is that my husband is working full time, going to school full time, is in the national guard, and then if he has a day off he plans it around traveling to another part of our state to see his children. He has nothing left over. I feel like I should be there for him and do all I can to support him but the plain fact is that I keep the house clean, balance the checkbook, handle all the finances, laundry, errands, taxes, phone calls, anything and everything PLUS work from home and I don't have anything more to give him. I have begged him to slow his schedule down and he disregards my feelings and goes about it the way he wants to...he says for our future good...he will have a degree and be a nurse and we will have more money. Well, all I have to say is I hope our marriage is still intact when he gets there because he is sacrificing what is most important in my eyes and that is us. You are totally correct about one thing...and I realized it myself this afternoon...if all he would have said was "yea you don't need that...or that was wrong...or well we can talk about it later but I don't think you need to keep seeing him" or anything remotely supportive it would have been different. I'm actually sick and tired of being sick and tired and being kicked while I'm down to boot. The bottom line is that a lot of men want women to be just like men, work like a man (and believe me until I got sick I always brought in more money than he did) but yet be like their mother and make sure their clothes are clean and house is clean, etc. I'm glad all his needs are getting met...mine are not and that is the truth I'm having to come to grips with. It is as simple as remotely relating and validating my emotions. That is all it would take. That is all I want. Either this man is going to treat me differently or there are going to be big changes. I realize there are worse and horrible marriages out there with abuse and alcoholics, etc. and I thank God my husband is an upstanding hardworking honest and well I've always viewed him as a kind person...I just think lately he never saves any kindness for me...I don't know where it is going. He's critical and negative, etc. Of course he is probably reacting to stress but it doesn't take but a second to say I understand. There is no excuse for it period in my opinion. Now enough blabbing...I feel ridiculous venting like this but I tell you this illness has effected more than just my health...it has effected my entire life, my job, my self-esteem, my abilities, my priorities, our finances, my marriage...everything. I feel like I need to be superwoman and keep my mouth shut, accept it, push on and earn a paycheck and be available when he has time to pencil me into his schedule, perky, healthy, and always feeling well and never having a problem or a bad day...that just isn't reality right now. My cape is at the cleaners and I don't even know if I want to put it back on.

Encouragment...light at the end of the tunnel...hmmm haven't found a doctor yet and I'm evidently not married to a man that can fill the gap either. Island paradise...cabana boys...hmmmm...that does sound good! When does the boat leave? Seriously though, thanks for being there for me.

I really don't feel like sharing this, but I have nobody to talk to today and thought if anybody would understand it would be somebody here. I have spoken before about how I ended up seeing a psychiatrist because of medication side effects from Ativan and Lexapro (given by ER and Dr. Grubb respectively) and was left in a bad condition with nobody to turn to for help in alleviating the symptoms and sensations these medications caused. I have no idea why I go to this jerk, the psych guy. I'm sorry for my bluntness but that is the nicest thing I can say for this arrogant excuse of a man. When I was matched up with him, not by my choosing but through a hospital program, I immediately found him abrasive, but I was in a state and needed help so I took the help where I could find it since my family doctor left me out in the cold without any advice and so did Dr. Grubb. My basic problem was agitation and trembling, tremors and extreme anxiety like I have never known and even though I had the POTS diagnosis I couldn't deal with it because the meds I'd been given so far had me a nervous wreck. This guy was supposed to be working WITH my doctors in my care. I found out a couple months ago by asking him if he ever talked to them and he said bluntly no he didn't need to, that it was all anxiety and he was treating me and that was that. I've never been to a psychiatrist before and have no idea how it is supposed to go but I can't believe it should be like this. The man is very abrasive and borders closely on condescending. He never entertains questions in any form...abruptly cutting you off and dismissing it. Any single thing I've ever asked is met with "it is anxiety". You cannot literally ask him anything especially medical. I get about 5 minutes and basically am at a loss as to what to ever say to the man especially after today. I have had about 3-4 appointments with him since the fall and it is always the same...5 minutes..how are you doing...it is all anxiety...what time of day is good for your next appointment and here is a refill rx. The only reason I have continued to see him is I suppose that he in fact did pull me out of that state I was in by giving me Xanax and it seems to work for me. I try to explain to him though that my physical body, my physical nervous system feels calmed down, but the physical symptoms are still there (low blood pressure, etc.). Today, I took printouts about dysautonomia with me and finally was prepared to share them with him hoping he would at least read it. I think I guess what I want is a team approach to my problems. It is too difficult to have specialists on one side saying POTS and then this guy in a box all by himself saying it is all anxiety. He absolutely refused to read the papers, refused a copy, and said bluntly "what is the point". I tried to explain that it is my understanding that I have this diagnosis of POTS and that it doesn't necessarily exclude anxiety but that anxiety is one symptom part of the complex range of symptoms that have a physical cause. He dismissed it entirely and said "it is all anxiety". I said "so anxiety can cause orthostatic hypotension" and he said "of course...it can do all kinds of things". I basically said well I thought maybe if you read this stuff and was enlightened you might in all your professional medication expertise maybe have insight into a medication regimen that might be even more beneficial down the line (trying to put it to him nicely by stroking that old ego) but he said basically "go to your appointment next month and let them see if they can come up with anything that can calm your nerves down more and then we can decrease the Xanax..that is the only thing I can see here". I said to him...I don't need my nerves calmed down more...if I was any calmer I'd be asleep. He just dismissed me by scheduling my appointment and handing me a prescription refill. I said "Oh I still have 1 refill left but okay yes this way I will certainly have enough okay" and took the rx and he said as he was getting up and walking away, well I wouldn't want you to run out and "panic" which the more i think about this really upsets me and I shot back...Oh, I don't think I'd panic...I'd call you but I wouldn't panic...have a nice weekend" and I left. I'm totally sick of being torn back and forth between people's opinions. Who knows what to believe sometimes. I am trying so hard to accept this thing called POTS and adjust and then this guy knocks me out of the water every single time by saying nonsense it is all anxiety. The last appointment I had with him I cried all the way home. Today all I could do was laugh rather than cry because I totally feel he is ridiculous, insensitive, arrogant, abrasive, and after my appointment next month with a new POTS doctor I'm happy to say will be "fired" by me. There was a time when I first saw him that I questioned taking the Xanax and told him I didnt' want to go from one benzo. to another and he basically threatened me that either I take it or he will dismiss me as a patient. I had nowhere else to turn. Well, I'm not that sick and weak anymore and I'm not about to take abuse off somebody I'm paying to work for me. That is the only thing that has made me feel better at all today and that is that I'm getting rid of this guy because I don't think he is of any use to me. Why in the world should I go and pay somebody 25.00 to shoot me down and ignore my questions...not a team player at all and not interested in stepping outside the box and even looking at a piece of paper or entertaining the idea that this condition might be valid. If it is all anxiety, why the heck do I still have POTS symptoms on anxiety meds? Perhaps he thinks more and more anxiety medicine is the answer...yea, I'd be sleeping all day..what a cure. So, my husband calls from work and asks how the appointment went. I shared how it went. The usual. He says well it isn't worth being upset about. I said that is correct but it is an example of what I was talking to him about last night...the frustration of being in a situation where you don't know what to believe half the time and feeling that others do not believe it is real (including my husband who professes he does believe it but still has the attitude stop whining and saying it isn't the worst thing in the world and various other comments). He says about this psych guy, something like "well you expected nothing from him and he met your expectations" or something to that effect so I asked what he meant by THAT and he starts getting all hostile and saying to me "will you stop being so overrective and looking for hidden meanings in things". I'm not looking for a hidden meaning in anything I explained, but simply "the" meaning. His response was nothing. Now how logical is that?! Certainly it is normal to say things all the time that mean nothing right? Sometimes I feel like I'm surrounded by a pit of vipors...like people are making me feel crazy when they are the ones who don't make sense. I admire people on this board who truly have the full support of their husbands/wives/significant others. For me, I just don't know. I love my husband and I believe he loves me but he just doesn't get it and I need something from him that I'm not getting and I can't even put it into words or define what it is...could it be validation and support? It certainly isn't pity...maybe just understanding I don't know. I'm just so sick of all of this and needed to vent. Thanks for listening.

Briarrose - that's it! That's the article I read. I printed it off for my doctor too (though he stuck it in my file and I doubt he read it). Thanks for posting it here!

Isn't it the truth though? Healthcare has done to the dogs! Satan and HMOs...I definitely see the connection! Seriously though I'm so sorry for your situation. Insurance companies are out of control. We pay high premiums for our insurance and still have all kinds of deductibles and exclusions, etc. that we didnt' before but to have none when you need it most...well it is heart breaking and makes me angry...just don't get me started on it. I'm not for government controlled healthcare of whatever they call it like what they have in Canada but these insurance companies need to be made to toe the line here in the US...something needs to change.

1. Always have been a deep sleeper. When I had a 24-hour Holter monitor test done when I first had this latest episode of persistent tachycardia start last summer (I call my POTS blowout) and was at the hospital it showed a high HR of 150+ and a low of 30 over 24 hours. I can only imagine the low HR was when I was sleeping...at least I would hope! I was told this was completely normal. The only time I have had trouble sleeping was on Ativan and that included sensory sensitivity to light and noise...things I'd never had before except sensitivity to blinking lights which I have noticed for a few years and still don't know why. The sleep problems on Ativan I would describe as wired but tired. On Xanax I do not have that problem and I am back to sleeping pretty soundly except maybe a little less sleep right before/around menstruation. Sometimes I feel sensitive to light/noise but usually on my foggy headed days when I am at my worst. Sometimes I call it sensory overload. 2. It takes me a while to "wake up" mentally in the morning...like my brain takes longer to wake up but my heart takes off as soon as I get out of bed. I think I've always been this way though even not on medication. Always a deep sleeper (as above with the exception) and always that shot of adrenaline in the morning when I wake up. I think either the tachycardia is more pronounced in the mornings now before I take my beta blocker or I am just paying more attention to my body and am more aware of it (??) 3. Have had some facial numbness before POTS blowout last summer and then some arm/hand numbness during, but mostly pain and aches...back aching between shoulder blades, lower back aching, and leg aches and leg tension terrible at times. The only real numbness I get now is if I lay in a wierd position I can wake up with a numb shoulder or arm and always if I sit with my leg(s) crossed and not outstretched they will invariably fall asleep quickly. 4. I do not pass out if this is what you are talking about. I think I have mild symptoms all day long and they get worse depending on how much activity I do but not like I'm good and than BAM I'm bad. Before I was diagnosed last summer after something triggered full-blown POTS, I would say I'd be clipping along in energy through the first half of the month and then yes BAM, like somebody pulled the rug out from underneath me and I had no energy and have the feeling of being weighed down by gravity feeling described below before my period. Does anybody know if there is a hormone connection and if so what and why? (fluid retention? if so, you'd think one would feel better before period then when retaining?) 5. Sometimes trouble with concentration. For me usually it is because my mind is going faster than I can sort it out...some have described it as a slow crawl...I think honestly I've had both. 6. Vision problems -- see above. I had the light sensitivity just the other day..it was a bright sunny day and I was trying to get some errands done but felt so bad I shouldn't have probably been driving. Also, I find I am getting night blindness I think. In the dark, everything looks smokey (? sp. smoky) and hazey (? sp. hazy)...I don't like to drive at night because I feel disoriented. 7. Meds changed personality or illness? Good question. I've always been a person who was on the go, go, go, but also one that could get upset by something and have a hard time letting it go...have to talk/talk/talk about it. I think I'm the same old me except the falling down tent of a body doesn't want to cooperate with the go/go/go and I still sometimes get stuck on things that bother me even though the medicine helps to calm my body down physically. So I guess I would say I'm still me even on Xanax and the beta blocker except that I do think I have more blue days than I ever have in my life and I don't know if that is medication or acceptance of the illness and change in functioning...who feels good mentally when they feel bad physically? (and honestly vice versa I suppose could be true). I have worried my meds cause a little bit more of the down cycles than I have ever had but I think the "hormonies" are playing a role too...which ones and how to fix them? 8. Heaviness - The closest thing I can say about this is that I have what I call a "passing out feeling" sometimes for days before my period...sometimes it seems related to low blood pressure and other times not...it is a strange feeling in my head and the best I could describe it is being weighed down by gravity...like my body is fighting gravity to stay upright. I've never passed out though. 9. Dizziness - I've had mere seconds-long episodes of true vertigo. As far as a dizzy feeling, I complain and say I feel dizzy but it isn't true spinning, etc. it is that anti-gravity feeling I get (see above). (like when you were little and would spin around and then try to walk straight and fall to the side...well I feel that way but I don't walk to the side...just feel weighed down by gravity). Have you had your ears checked for inner ear disturbance? Not to say it isn't a common symptoms of these disorders because it is, but inner ear could be an aggravating factor. 10. - Heart pounding - My experience was my heart racing upon awakening in the morning and it would do that all day long sometimes or stop abruptly during the day just to reappear for no reason at rest later in the evening, etc. I was tolerating it. The heart pounding started after taking Ativan and when it would wear off I would have the worst heart pounding flipping sensations I've ever experienced in my life. Same thing with Atarax and same thing non-stop with a tremor in my spine to boot after taking 1 dose of Lexapro. Now I am only aware of a little heart pounding in the evening when I relax on the couch to unwind and I attribute it to the beta blocker wearing off and/or the amount of activity I pushed myself to do that day. I find I will move my body into whatever position I have to in order to not be aware of that heart pounding feeling including moving from resting on my hands if I feel my pulse strong and fast...I just adjust position and ignore it. Don't be sorry for your questions and you are not a burden. For understanding, you have come to the right place. It is aggravating and I too want my life to be as it was...don't rule out that it will never happen...functioning halfway normal is what we all will settle for. You are not alone! Realizing that was the single most beneficial thing for me that I can't even explain it. I'm so glad that you found us because I know how it feels to feel alone in this experience and know you will find peace of mind here as I have.

Oh my MomtoGiuliana can I relate "The fact that I couldn't stand up, that my heart rate and blood pressure were erratic and that my electrolytes were off, were no indication to him that anything serious was wrong."...same thing here, especially with the electrolytes. What a horrible thing to go through at the hands of this doctor and agree he is awfully arrogant. He actually makes a good case for breastfeeding with that statement! I had a similar experience of emotional manipulation but it was much more subtle by a female ER nurse...When I first ever took Ativan it was because this nurse in the ER told me that it is anxiety, it is nothing to be ashamed of, that I should just take the pill because if I didn't I would actually and literally have a heart attack and that she has seen it happen. Not a fair mind game to play on somebody who was literally frightened and anxious soley because they didnt' know what was wrong and being told I would definitely have a heart attack didn't help much. Much later when the Ativan was causing me more problems than not with withdrawal anxiety I had to call around to try and find help only to be told that there is nothing that can be done for this type of problem (anxiety med withdrawal) unless you are suicidal (which I was not). I explained to the nurse over the phone that I had been misdiagnosed and given this medication, etc., and she replied very dryly well "you've learned a lesson then didn't you". Some people out there actually border on evil in the way they treat others. To JustMe, I agree wholeheartedly and wanted to add that my one sister was in the hospital recently for a hemicolectomy and hysterectomy at U of M which is supposed to be a very good facility (and she is a nurse and her husband is a nurse there in surgery too) and she still didn't get good care. She read an article recently that says that people going into the hospital should actually think seriously of hiring a private duty nurse to be with them and as extreme as this sounds it is probably true...though who could afford it. Family members being present is also a great idea in order to be an advocate...when you are ill it is sometimes difficult to communicate everything that needs to be said or ask the right questions and that is where others can be so beneficial. I can't say I really had that much support when I was in the hospital because even my family didn't know what to think....I had my mother on one hand telling me I was having a nervous breakdown and that if I didn't eat I was going to die...then my one sister saying I was having psychosis because of the anxiety med withdrawal where I would feel trembly and sick and would be crying and would call her on the phone for support, and then my husband saying at one point out of frustration I realize in what to do "how many times do you have to go to the ER before you realize that what you are feeling isn't happening" (i.e. skipped beats, etc.). All loving people, all close family members, and 2 of them with their own medical problems that had been mistreated early in their condition, but still no true understanding....why expect more from strangers? I have to admit I felt betrayed on some level by even those I love and who I know love me because I felt they were even judging me at times and wondering if it wasn't all mental and I started to withdraw into a wounded shell in a way. Sometimes you are alone in a situation and try as anybody might they just don't understand. In my darkest hour that is when I prayed Jesus either heal me or take me home because I have surpassed my tolerance for this kind of suffering. Those days seemed like years. I've just had to forgive them and hold fast to who I know I am and pray for direction and strength. I truly felt like my spirit was broken by the situation, but slowly I feel like I have my fighting spirit back and I can move on. It is true I think that old saying "that which doesn't kill you makes you stronger".

Well I'm really going out on a limb here because personally I don't find most religious jokes funny...I guess I'm just sensitive that way. However, the end of this "joke" called the Holy Diet pretty much sums up what I think of insurance companies........... In the beginning God covered the earth with broccoli, cauliflower, and spinach, green, yellow, and red vegetables of all kinds; so Man and Woman would live long and healthy lives. Then using God's bountiful gifts, Satan created Ben and Jerry's and Krispy Kreme. And Satan said, "You want hot fudge with that?" And Man said, "Yes!" and Woman said, "I'll have another with sprinkles." And lo, they gained 10 pounds. And God created the healthful yogurt that Woman might keep the figure that Man found so fair. And Satan brought forth white flour from the wheat, and sugar from the cane, and combined them. And Woman went from size 2 to size 22 So God said, "Try my fresh green salad." And Satan presented crumbled Bleu Cheese dressing and garlic toast on the side. And Man and Woman unfastened their belts following the repast. God then said, "I have sent you heart healthy vegetables and olive oil in which to cook them." And Satan brought forth deep fried coconut shrimp, butter dipped lobster chunks and chicken-fried steak so big it needed its own platter. And Man's cholesterol went through the roof. God then brought forth running shoes so that his Children might lose those extra pounds. And Satan came forth with a cable TV with remote control so Man would not have to toil changing the channels. And man and woman laughed and cried before the flickering light and started wearing stretch jogging suits. Then God brought forth the potato, naturally low in fat and brimming with potassium and good nutrition. Then Satan peeled off the healthful skin and sliced the starchy center into chips and deep-fried them in animal fats and added copious quantities of salt. And Man put on more pounds. God then gave lean beef so that Man might consume fewer calories and still satisfy his appetite. And Satan created McDonald's and the 99-cent double cheeseburger. Then Lucifer said, "You want fries with that?" and Man replied, "Yes! And super size' em!" And Satan said, "It is good." And Man went into cardiac arrest. God sighed and created quadruple bypass surgery. And Satan created HMOs.

Yes I've experienced it also. It's called ignorance, insensitivity, and stereotyping. What has helped me get over mistreatment by members of the medical profession is not dwelling on it and realizing it is their own ignorance. Yes, I've day dreamed about writing various nurses and doctors letters, but then thought what is the point and it isn't worth what little energy I have. It is something I'm sure we have all experienced at one time or another...it is something you are doing to yourself for attention...it is all in your head...or it is all anxiety or a mental problem. Just stick to your guns from here on out and realize what you have is real and if and when you encounter this atttitude again take it as an opportunity to educate them if you have the strength or patience I agree also that ER care is the worst...they are there to basically "treat you and street you" so it isn't the best environment to find help for a chronic and misunderstood illness flareup though I realize why you went...I myself had 10 ER visits last summer I'm ashamed to say when I was ill....for me it was thinking this time the tests (EKG or whatever) will document something enlightening and a light will go off and they will know what it is and help me...well no lights, bells, whistles, or chimes went off and I always went home the way I went in except with a longer paper trail of misdiagnosis and a reputation evidently...nurses in triage I never saw before would say "oh you are the girl who has had diarrhea for months.." stuff like that. Inpatient hospital care is no better. In the hospital, one doctor made fun of me for having a wheelchair in my room because when first admitted I was too weak to walk around. If I said I was having chest pain, the nurse would say "do you want an Ativan"? Yes, that is what I want....to be drugged into not caring my chest is hurting or my heart is racing...thanks! If my chest hurt, or I had oxygen desaturation and felt like my lungs were glued together, or I had episodes of flushing, it was not documented by the nurses in my chart (and yes I was watching my chart), but if I said "I had a hard time sleeping last night...I felt too wound up" well that made its way into the chart. If you can't tell, I have little faith in our medical system and I hope many of these doctors and nurses with all their smuggness and self-rightousness for their luck of good health all sleep well at night....for many of them it is about the almighty dollar and not patient care anyway. If it were about patient care, they would play detective instead of prosecutor. Someday I believe though they may know somebody personally or find themselves in our situation and have a different understanding of what it is like to be on the receiving end....although to a great extent I would not wish this on anybody...I've said before...just 1 hour of understanding might be all it would take. (Somewhere on the NDRF website or another POTS site I can't remember the name of, there is an article for doctors to take a test to understand...get dehydrated, etc., and try to stand up, etc. it is quite a good idea actually! Maybe they could get all the medical personnel to have to go through it as part of their medical training!) As for your last question about how do people handle it when it happened to them? Well all I can say for myself is that I was too sick and weak and at their mercy to do or say anything. As a nurse yourself, I'm glad to hear that you are compassionate of others! Enough ranting though...I'm determined to enjoy this day! My best advice...don't dwell on it..you know the truth!