Jackie

Well I have to say that I've had a very stressful week. I know that it has been said before that stress can make us POTS people feel worse but it really bears repeating for me right now. The thing is, this past week has been one thing after another. It all started last weekend. I had a bad weekend with my husband...a little bickering back and forth. We had a family birthday party to go to for his niece, grocery shopping, etc. After the party last Sunday night I get a knock at the door and it is the niece of a girl I grew up with. I haven't been close to her in many years but still I have run into her a few times over these years. She was a good friend in junior high and somewhat in high school when we started going in our different directions in life. We hung around a little bit in our early 20s and then she got married. Anyway, she was only 38 and she died. Talk about floored. Evidently, and this is the worst part, she was going through a bad divorce and her whole life just went out of control. She ended up with some low-life guy and possibly on drugs in addition to all kinds of "happy pills" like Xanax I'm told by her family members (of course this hits my panic button right off right and makes me angry they would characterize the medication that way anwyay). She of course did have 2 back surgeries I'm told over the years and had been on steroids, etc. I wondered to myself if her family realized that the steroids themselves could have caused so much depression in addition to anxiety (along with the huge weight gain she evidently experienced). In any event, her husband had an affair and left her and after that she hooked up with a bad news guy, her husband won custody of their child and evidently she overdosed whether it be accidental or purposeful and on what they don't know yet whether it be rx meds or street drugs or both. Needless to say I was rattled but I went to the funeral and made it through the whole ordeal. One day I had to go to court with my son for a little trouble he has gotten himself into...then 2 days of the funeral thing (visitation and the memorial service). During the funeral, my husband mentions a girl is there that he works with. I notice her staring at us. Then I find out later, not only does he work with her but they talk at work "occasionally" about a class they are both taking for nursing (though at different times). The old imagination goes into overdrive and I start worrying my husband is having an affair with her. It was a little strange that she was watching us...and one time saw me looking back and gave me a strange smile. Needless to say I was certain she is after my husband. So, I go right up to her and introduce myself very pleasantly and let her know who I was. My husband was nothing but attentive to me the whole time in front of her so I know it was just me but I was worried for a few days thinking of all the worse possibilities and finally my husband had me convinced that I'm worrying for nothing. I think the whole thing with my friend dying, what she went through, mixed with my own insecurity of my own health problems and what I've put my husband through this past year and it just sparked the old insecurity that he is going to leave me. Then, the next day, my cat throws up a worm. Yuck! I find out that my cat has roundworms and I have 6 cats so now I'm freaking out because of all the info. on the net of how contagious they are to humans, etc. Luckily, I have a vet office with great girls that work there and I called them freaking out and told them how I can't afford this...how the cats have wrecked my house...how I'm not working as much because of health problems..blah blah blah and they were such sweethearts and believe this they snuck me into the office while the dr. was away and gave all my 6 cats worm shots and are going to do the same thing in 2 weeks to help me out. What wonderful people. I told them it is just getting to be too much. I just had a few of them in over the past month with what we thought was respiratory stuff (which now likely was related to a worm thing and we didnt' know it). I feel like I just can't take it sometimes. There are too many of them, yet I can't stand the thought of getting rid of them. Who would adopt 8 year old cats and if they went to the humane society they would be put to sleep. I can't just drop them outside. I feel stuck. I love them, but needless to say I had a couple of days of feeling overwhelmed with that. I had to lug all 6 to the vet. Take 1 there, pick up 5 more carriers from them, drive home, chase and load all the other 5, drive back, lug them in and out of the office and them drive home. I thought I'd pass out. For 3 days now every muscle in my body has been so sore. Going through all this, I've been cleaning my house and helping my mother sell her vintage Fiesta collection and getting e-mails like crazy from my job about needing to make up the work I was missing for the funeral, etc. I guess my point is this. Through all of this I just kept telling myself "you can do this...you can do this" and then finally this weekend I just kept having like panic-type feelings...like my Xanax wasn't helping at all. One day I checked by BP and it was 77/65. About 15 minutes later, it was back to normal. Why do the worst things have to happen all at once and when I'm on my period no less. Talk about lowered coping mechanisms. I just felt like I was getting through it all okay until this weekend and then had these wierd anxious feelings for no reason this weekend that scared me and I thought oh no here we go. I hate not feeling well. I hate falling apart last year. I think I was handling it better (the heart racing and irregular heartbeats) before they ever gave me any anxiety meds. Most of the time I've accepted it and think "well, they help me"...but at times when they feel like they don't I think what if they are causing the problem. Anyway, just had to vent. Here I was so upset a few weeks ago when my appointment with Dr. Grubb was cancelled after I've waited 6 months to get back to see him not even knowing that on the exact day of the appointment that was scheduled 4/29 at exactly the same time 11:00 a.m. that I'd be actually a memorial service for my friend's funeral. God sure has a way I think. I think I need to realize that he sees the whole picture and realize he is in control and does truly work everything out for our good. Now, I just have to get over all this strange anxiety I'm having again and fear of medication. I know I'm overreacting...has anybody ever been through anything like this (i.e. on and off again fear of taking medicine?). Sometimes I feel like I'm in a bad dream. I really think the med. scare is related to my friend dying too. My biggest fear of medication is that is will cause me to be crazy or something. I know how stupid that sounds but I'd take physical problems any day over mental. This panic thing I think is related to the bombardement of stress lately so I just keep telling myself it will pass. So that was my week, court with my son, funeral for a friend, trying to work, help my mother sell her dishes, with cats throwing up worms while I'm on my period worrying my husband is going to be tempted by greener pastures (though she didn't look too green to me! Oh well, feel worse in a way recanting my tale but I am just curious what others think. Sometimes I wonder what if this is all just a stress conversion disorder or something and not POTS (it feels like both...I just know my body is way different than it was before all this happened to me). I still don't know who to believe sometimes still and have no idea when they will ever let me know when my appointment with Dr. Grubb is rescheduled for. In the meantime, I just have to push on and can only wonder about changing my medications, etc. I just want to enjoy my life and not feel fearful of so much stuff.

My one sister does not have POTS that anybody knows of though NCS/POTS runs in my family but she was diagnosed with fibromyalgia and had adenomyosis herself. She is 42 and recently had a subtotal hyst (ovaries left in) with a partial hemicolectomy for bowel perforations from diverticulosis/diverticulitis. Maybe I could hook you up with her e-mail address to talk to her if you want? At least she could give you the heads up on the hyst part if you are interested. It got so bad that she was in constant pain too and she had some kind of polyp or something inside her uterus too and it began to put pressure on her bladder and she started having incontinence problems, etc. It was a really hard thing for her to go through but she is defin. feeling better.

I took 1 dose of oral prednisone for an allergic reaction about 4-5 years ago and had persistent tachycardia and POTs-type symptoms for weeks. At that time, there was no doctor who would say that steroids could cause tachycardia but yet I've spoken with many many people who are very sensitive to steroids (like asthmatics who use inhalers experiencing fast heart rate, etc.). Usually I think it happens at higher doses and mine happened at a very low dose but evidently I am very sensitive to medication and if your friend is too I believe it could be from the steroids because the same thing happened to me (exagerated response). As for the low BP, I don't know about that one. I know it sounds really strange but I've found the times I've had real problems was taking things that somehow threw my kidneys and system out of whack (hence my fear of Florinef)...maybe her system is shaken and can't regular her fluids or something and that is causing the BP problems...just a theory. I realize steroids help many people but I don't ever want them again and have it noted on my medical chart because of the experience that I had.

Oh and I also wanted to say about the placebo effect...I wasn't bothered by that because I do believe our minds are powerful and can effect so much like you said about outlook, etc. I was just telling my husband, I almost wish some doctor would say "oh yes, POTS, yes that is completely treatable, etc....just take this...no side effects, etc." (sugar pill or whatever) and you will be completely healed...and if it worked and tricked my brain into thinking I was healed then GREAT!!! I really don't care how it happens at this point so if I ever get back on track financially I'm planning to look into acupuncture, etc. too. It couldn't hurt I figure!

I know isn't a cool site for information really. I haven't downloaded and read the whole thing but from what I looked at, it sure seemed to make sense. I definitely believe the HPA axis plays a role for some of us who have trouble with fatigue, sleep problems, brain fog, panic attacks, anxiety/depression, sweating, etc. My sister who was diagnosed with MS has had problems for years before her diagnosis with bladder leakage and actually breast discharge/leakage. She had it worked up at one point in her 20s (the breast leakage) looking for pituitary problems and they didn't find anything significant that I remember. Anyway, fast forward to her mid 30s and she ends up diagnosed with MS...still has the breast leakage at times but no lesions or anything showed on CTs or MRIs of her brain on the pituitary and she has neurogenic bladder which means she has to pretty much wear panty liners all the time. If the MS is attacking that part of her brain, you would think plaques would show up, however, they have found no plaques to date actually but the specialist she sees definitely believes she has MS as she has right sided neuro deficits, spasms, burning pain sensations all over her body, etc., etc. To talk to her about her symptoms, I don't know how she stands it. Medication I suppose. She puts me to shame though because I think I would have lost it a long time ago with what she has been through. Anyhoo, yes I personally think there is a link too. Thanks you guys for checking out the site and thanks EM for the link to the relaxation. You know, after my go-around with an outpatient program to help me get on some medication for my nerves after they messed me up pretty well with medication from the ER and the dose of Lexapro I couldn't tolerate, I was actively seeking relaxation tapes/CDs because we used them in class occasionally and they really helped. I had no luck whatsoever except 1 outdated one from the library that I borrowed. The ones you post..do they have subliminal messages or anything or just plain talking or music? I didn't listen yet but will probably try it...it's been so long I gave up on finding any!

Danelle, don't feel bad that you got in...I think it is great really especially for an initial visit which is far more important than me who has already been diagnosed even though blowing in the wind in a sense. I was just surprised by the appointments around that date that's all...if I hadn't seen your post I would not have brought it up. I didn't have a bad experience with Dr. Grubb at all...he's great...I just think he is way overworked though and the nurses don't return calls but that has been just my experience maybe. I like more hands on but I fear he is too busy for hands on at least in my case. For people who live far away, flying in every 6 months is probably about all they could do but I live just across town from MCO (15-20 minute drive) so I wish I could get in more often. I haven't called them back yet to reschedule because I just found out (hadn't listened to my voice mail for a day or so....). Anyway, I'm truly happy for you and I wish you luck with your appointment. You ARE going to love Dr. Grubb....he is very mild mannered and highly intelligent. He's one of those people that you can just see the wheels turning in his mind as he is deep in thought, etc. He is very gentle and soft spoken. Keep us updated.

Can't comment on the flying because I live just outside Toledo, but just as a side note my appointment was actually for the 29th with Dr. Grubb....I've waited 6 months for this appointment and they called yesterday and left a message saying that Dr. Grubb will be out of town on the 29th so I have to reschedule. I tell you, Ihave no luck with doctors...nada...zip...the last time I saw him he gave me the beta blocker and Florinef to try...I was afraid to take the Florinef but wanted to take the BB so I called his office to ask if I could take one without the other and never got a return call. So, 6 months later I was hoping to get THAT questioned answered which actually doesn't matter since I've been on the BB anyway without the Florinef and now this. I'm sorry to be a downer but I'm disappointed. I need a doctor.

Well, when I had a holter done last summer a few days after the tachy started it showed a range of 30 to 150+ I believe over the 24 hours and the doctor said that was normal. Nobody differentiated when the high or low occured (i.e. sleeping, etc.) but I can only imagine the 30 was when I was asleep. Also, 150+ may be normal doing aerobic exercise, but the most strenuous thing I did that day was sweep my floor. I had gone to the ER the night before with tachycardia and that is when they placed the monitor and sent me home with my first dose of Ativan telling me it was anxiety. I wasn't taking any other medications or anything like beta blockers to that point since it had just been going on a few days at that time. I guess I did wonder if my HR went so low because I took the Ativan that night when I got home from the ER but I'll never know. I don't think the doctor realized that I did very simple activities that day just moving around the house because it was exhausting to do anything and that was how high my HR was. Since I knew I was having the tachycardia, the high didn't surprise me but the low of 30 surely did but like I said they said it was normal so I just try not to think about it. I have always been a very deep sleeper so that is probably why...either I sleep deep because it goes so low or it goes so low because I sleep deep or went that low because of the Ativan though I did ask the doctor that and they said that Ativan wouldn't effect the heart rate. So...like I said I just try not to think about it...maybe I've been that way all my life (i.e. low when sleeping) but I certainly was never that high in my life just sitting around or walking around except that time 5 years ago and then starting again last summer and continuing for months until I started the beta blockers. Anyway, all of this was to say that I agree it sounds low because I thought mine sounded low...I'm not exactly athletic and certainly not physically fit like some here who jog and exercise, etc. I have a sedentary job. So, this must be the standard opinion of doctors that these low numbers are normal...they probably have to see a number like 5 or something at this rate before they think hmmm that does seem low!

thisblows - are they still going forward with the ablation even though they are considering pituitary tumor? I was just curious. I've been following your posts and think they are interesting and I'm glad you are getting to the bottom of things. Good to hear you are out and active! (it seems you started a beta blocker..(?)..it helps huh?...hard to relax with heart rate so high!) At least that is some relief! I wish you continuing good luck and keep us posted!

I just wanted to post a site I found yesterday that looked really interesting about connections between CFS, IBS, autonomic problems, etc. http://www.mind-body-health.net/ I think it is very interesting because I myself when I got sick last year, thought that it seemed like there was some quirk in my HPA axis because of awakening at the same time each morning early between 4-7 (?) to have diarrhea which is the time that the HPA releases all the hormones....later with calcium supplementation which caused me to have excessive thirst and urination which was like a diabetes insipidus-type syndrome my symptoms progressed to awakening at the same time drenched in sweat with my heart racing, hands and feet sweating profusely, and loose bowel movement, etc....then came all the extreme body aches and nausea, inability to eat, quick weight loss, and was just the beginning of the electrolyte inbalance and palpitations which progressed later to anxiety and panic attacks once they started me on anxiety meds, etc. The trembling problem I never had until they tried me on the dose of Lexapro and guess what...sometimes it is still there, usually not visible but inside like others describe and that is how I know it is time to take my Xanax. Talk about fear of meds. Anyhoo.... Interestingly, on this website it is theorized that chronic fatigue syndrome and fibromyalgia, etc., may have to do with a dysruption in the HPA axis and hormone secretion, etc. I know I probably sound crazy - ? what else is new? but I really think I know my body and this stuff makes sense to me but yet without a degree in medicine I don't know how to put all the pieces together. I know how it all started...exactly as above..and I theorize that the dysruption in my body's ability to regulate fluids because of whatever reason when I took the calcium caused the POTS to present itself fully when I had only had subtle symptoms over my lifetime....in other words aggravated everything and threw me into a complete POTS flare. I told my husband that someday, maybe 20 years from now they are going to know what to do about this stuff and it probably will boil down to something ridiculously simple like a shot once a month or something of some hormone or something and they are going to be shocked looking back that they had everybody taking all these meds we are on. It reminds me in a way of that one movie Lorenzo's Oil and I apologize I don't remember the name of the disease but it boiled down to a simple treatment but it took somebody taking time and effort to keep putting the pieces together until they unlocked the secret which was an easy cure once it was discovered what the body was missing/lacking, etc. Anyway, check it out and let me know what you guys think. My doctor once mentioned during all this that I could have CFS because of a high EBV titer...like everything else though who knows and labels without definitive treatment is not exactly helpful. When are they going to get to the bottom of these disorders/conditions?

That sounds about like a normal BP for me...beta blockers take me into the 90s/60s usually (or sometimes I stay up in the 100/70 range)..BUT sometimes I go down to 80s/50s...that is when I get really feeling symptomatic....90s/60s feels okay to me...been that way most of my life that I know of 90s/60s to 100s/70s - by the way I take atenolol 25 mg once a day. Can't figure out why some days I go low and some days I don't unless it is fluid depletion, etc. Also, some days I get a little depressed around 2 hours after taking it and sometimes I don't too bad...can't figure that one out either.

BBs increase adrenaline? I thought the heart beat was supposed to be stronger with BBs because it increase the force of the cardiac contractions in oder to beat less times...can somebody clarify?

How is the test done to check cortisol levels? I had a cortisol challenge or something like that about 5 years ago when I went through a 6-week episode of persistent tachycardia but I don't think anybody has checked them since. It is just a blood draw? I will have to ask my dr. if my cortisol was checked during this last episode...practically everything it seems was checked but honestly I don't think cortisol levels were drawn....hmmm.

I just wanted to post a site I found yesterday that looked really interesting about connections between CFS, IBS, autonomic problems, etc. http://www.mind-body-health.net/ I think it is very interesting because I myself when I got sick last year, thought that it seemed like there was some quirk in my HPA axis because of awakening at the same time each morning early between 4-7 (?) to have diarrhea which is the time that the HPA releases all the hormones....later with calcium supplementation which caused me to have excessive thirst and urination which was like a diabetes insipidus-type syndrome my symptoms progressed to awakening at the same time drenched in sweat with my heart racing, hands and feet sweating profusely, and loose bowel movement, etc....then came all the extreme body aches and nausea, inability to eat, quick weight loss, and was just the beginning of the electrolyte inbalance and palpitations which progressed later to anxiety and panic attacks once they started me on anxiety meds, etc. The trembling problem I never had until they tried me on the dose of Lexapro and guess what...sometimes it is still there, usually not visible but inside like others describe and that is how I know it is time to take my Xanax. Talk about fear of meds. Anyhoo.... Interestingly, on this website it is theorized that chronic fatigue syndrome and fibromyalgia, etc., may have to do with a dysruption in the HPA axis and hormone secretion, etc. I know I probably sound crazy - ? what else is new? but I really think I know my body and this stuff makes sense to me but yet without a degree in medicine I don't know how to put all the pieces together. I know how it all started...exactly as above..and I theorize that the dysruption in my body's ability to regulate fluids because of whatever reason when I took the calcium caused the POTS to present itself fully when I had only had subtle symptoms over my lifetime....in other words aggravated everything and threw me into a complete POTS flare. I told my husband that someday, maybe 20 years from now they are going to know what to do about this stuff and it probably will boil down to something ridiculously simple like a shot once a month or something of some hormone or something and they are going to be shocked looking back that they had everybody taking all these meds we are on. It reminds me in a way of that one movie Lorenzo's Oil and I apologize I don't remember the name of the disease but it boiled down to a simple treatment but it took somebody taking time and effort to keep putting the pieces together until they unlocked the secret which was an easy cure once it was discovered what the body was missing/lacking, etc. Anyway, check it out and let me know what you guys think. My doctor once mentioned during all this that I could have CFS because of a high EBV titer...like everything else though who knows and labels without definitive treatment is not exactly helpful. When are they going to get to the bottom of these disorders/conditions? Oh, and everybody have a great Easter!

And I also wanted to thank hilfgirl33 and Julia for their support and explanations helping me to understand that the negative tilt might not mean anything (actually I had posted my second rambling story before anybody had posted but it crossed in cyber space and ended up under hilfgirl's!)...so I wanted to say thanks to you guys for posting because you do make good points that helped me sort the TTT issue out. Boy hilfgirl, I'd love to have your doctor! It would be so nice for 1 person to handle this stuff instead of having to go all over town!

I know I was confused about that part with the tilt test, etc., but the more I thought about everything that was said (and there was a lot said in 2+ hours) she did say I'm definitely a "dizzy"...and that is meant in a nice way...my sister said she uses that term a lot to refer to NCS/POTS people of which she is one. So, I guess that she did really believe that I have POTS and didn't blow me off or anything...I think taking all things into consideration that she just feels maybe I have more issues going on that need to be explored or questions answered that are outside her area of peds and in adult medicine that she thinks are better addressed by others besides herself...as to her thinking I should continue with Dr. Grubb and not herself perhaps that is professional courtesy or simply that she has too many patients already? I truly am thankful for her time though which was very generous (2+ hours if not 3) and she is very very intelligent and kind and I'm so glad that she is going to look over the information I gave her and give me some insight into what she thinks if anything significant that hasn't been touched upon or whatever. My sister said she is very intelligent and thorough. How many doctors has anybody met ever done that? None that I've met so far so overall I'm not upset or anything like that at all just disappointed because I like her so much I want to continue seeing her and that may not be in the cards so to speak that's all, but we will see.

Geez, and I realize after all that rambling that what I'm disappointed about is not really explained in a coherent way. It has been a long day. The thing basically is that I thought that this physician, since she is a PCP to young adults and says she has patients as old as 70 years old and treats NCS/POTS, that she would be like a PCP for me since I don't have one who is actually on top of coordinating my care....who would be good at the day to day management of POTS for the time in between seeing Dr. Grubb. What she said is that basically I need a PCP or internist in addition to Dr. Grubb...in as many words said she was not the person to coordinate my care because she could handle ONLY the NCS/POTS too because she is a pediatric specialist and though works with adults with NCS/POTS is not a specialist in other adult health conditions and therefore doesn't feel comfortable treating adults for anything besides NCS/POTS...if that makes any sense. So, it isn't really like she is dismissing my problems, but she feels I need a doctor who can handle the POTS and more and she is not the one for that since she is a peds specialist and that is where I think all of the confusion was....so it isn't that she is not a good doctor or that I'm not a patient in need of management...it is that what she can offer and what I need doesn't match up. I need somebody who can manage the POTS AND look at the whole picture and other conditions and she doesn't do adult medicine. (The only other thing I can think of is whether she would agree to replace Dr. Grubb as my NCS/POTS specialist maybe and I find another PCP...there's a new question/combination...but she didn't offer that so must feel I should stick with Dr. Grubb...either she thinks he would be better, or she doesn't want me as a patient, or it is those 16-hour days she works and can't take me on....oh well, we will just have to see what she says by e-mail). Thanks for helping me sort it all out in writing this...I feel better I should have thought it out and sorted it out before I posted..oh well, one of those days. Thanks for letting me ramble!

Well for anybody who is interested I had my long-awaited appointment today with the new doctor I found. She is a pediatric specialist but does treat adults with NCS/POTS. I guess I'm a little confused so there isn't really much to report. I'm still trying to process everything. Apparently, my tilt test done by Dr. Grubb was negative because of the 20-beat increase in heart rate. I guess I knew that but didn't...I mean I knew the tilt did not show the excessive increase in heart rate that had been witnessed in the ER and in Dr. Grubb's office on his examination (40-beat increase from sitting to standing) but I believe(d) that Dr. Grubb was treating me for POTS and still believe he is, but the new doctor seemed a little put off by the test result at first and said something about miscommunication and that she only treats patients with NCS/POTS. As the conversation progressed, I perceive that she recognized and acknowledged that I do indeed sound like I have POTS but she went on to explain why she would not be the proper person to treat me (she said I needed more of a PCP or internist to look into questions I have about seizure disorder, brain/spine MRI, autoimmune diseases, etc.) and also questioned why I was coming to see her if I am seeing Dr. Grubb. She really is a very, very nice lady and she, an assistant in her office (and a medical student for audience by the way) spent greater than 2 hours talking with me and they were all very nice and informative. I was not examined in any way however which is different than I thought would happen and really come away with nothing to report except that she is going to take the time to review all my records, medical history, family history, and lab tests, and questions I had prepared for her and write me e-mail and give me suggestions. This I guess is at least more than anybody else has offered to do. She pointed out that I need a PCP to look at the whole picture and explore these avenues I have questions about and put all the pieces together so to speak (which is exactly what I know I need and what I thought I would find in her and evidently she is not the one to do this but at least she is also going to brain storm for names of PCPs to suggest for me). In the meantime, she suggested I drink 20 ounces of fluids an hour (doesn't this sound excessive?) and salt load and follow up with Dr. Grubb. She said I am going to be very difficult to treat because I'm highly sensitive to medication from what I told her about my medication reactions. I suppose that is about it really. I'm not sure what to think. I'm glad that I got to meet her and I'm honored that she is going to take the time to review my records and give me some direction, especially since she herself has the condition and so do others on her staff and her patient base, but honestly and basically I feel I am still at square one still. So, I cried a little on the way home because I realize it is another dead-end street in a way and I'm confused now about the tilt results and feel I should call Dr. Grubb's office and ask whether the technically negative tilt means I don't have POTS after all or what. (Ever feel as if you are in a bad dream that just keeps going in circles?) I guess overall I feel like the things I've been through are too complex in some ways to even explain and re-hashing it just brings back all the sadness and confusion talking about it for so long and it is hard to communicate so much even in that amount of time and basically to me nothing makes sense and healthcare is too fragmented and I'm starting to feel like not bothering and just suffering in silence from now on. I don't have the energy to keep just going in circles and repeating my story. She encouraged me about going to the specialists I need to see and having things ruled out and then having a good PCP to evaluate all the info...bright idea huh?! and that is great and true if I can find one but the bottom line is also that at least to me it makes me look like a hypochrondriac or something walking in with this big list of things I want ruled out or questions I have like I want to have something wrong with me and this is what I think doctors think when you are "advocating" for yourself. So, you either advocate to find out what is wrong with you at the expense of looking crazy or stay home and learn to live with it and keep the questions to yourself and just feel bad and feel crazy anyway. What is the answer? I knew I had my hopes up way too high...I really thought this was going to be a doctor who would instantly understand and have some brilliant insight into something different I could do to help myself....just take me under her wing and make it all better. Well I've awoken from my dream now. I honestly totally and sincerely respect the heck out of her and am very thankful she is going to write to me and tell me what she thinks after she has gone over everything but other than that, well I'm just feeling like I'm all alone again to figure out what to do to feel better. Maybe I should go to medical school and just treat myself? Yea right...I can't even hold down a full-time job. Oh well, enough of my sob story. I will choose to look on the bright side. Maybe she will have some good suggestions by e-mail and when I go back to Dr. Grubb I can move forward by talking to him about trying something new. The thing I have a problem with is be given a medication to try and being left blowing in the wind when there is a problem and that is basically what he did to me...nurses never return calls, etc. This is where I suppose the PCP comes in...wish I had one who could help but I don't so here I am. So, I guess the first place to start is a new PCP, go through the whole story all over again, ask for tests to be done (basically be the doctor instead of the patient) and then hope the pieces will come together. I simply want to know why I can't tolerate calcium and what I'm to do about the osteoporosis then since I cannot and is the osteoporosis what is making my spine and legs hurt so bad and what can I take for that since ibuprofen and aspirin make me bruise easily. I have a high EBV titer...do I have chronic fatigue? I hurt in my spine and legs (do I have fibromyalgia, arthritis, osteoarthritis, rheumatoid arthritis or damage from the mutiple car accidents I've been in)? All these things run in my family. Is this the beginning of MS? My sister has MS. Am I simply in pre-menopause and hormones will help? What is the deal with the muscle twitches, aversion to blinking lights, brain fog, etc....seizure disorders run in my family...I've heard there is a type of seizure disorder that causes panic-type symptoms (focal seizures)...is this part of the picture? I asked about cutting the beta blocker in half because of the low BP episodes and some depression and fatigue from it and she said it sounded like I need to take an additional at night because I feel tachy at night when it wears off....never thought of that...guess it is on the list of questions for Dr. Grubb (though I think I want a divided dose...not more and more) ughhh anyway. Am I the only one left to themselves to research and question and try to figure out what to do? Does anybody else have a doctor that gives them something to try and once tried if it doesn't work or makes you worse leaves you to suffer through it without explanation or further assistance until the next appointment possibly 6 months down the road or find help elsewhere? This is what I feel Dr. Grubb did and my PCP is worthless so I'm not sure where to go from here. Anyway, hope everybody is having a good day. The only good thing about today is that I don't have to work...the house however beckons to be cleaned...it never ends! Mind over matter I suppose is the answer right...I'm not sick...my heart is never tachy...I never feel palpitations...I am completely at peace...I am strong and healthy and have bounding energy and concentration...my feet are not blue...my hands are not cold....I am well...I am not dizzy...I feel strong...I can do anything!

Thanks Michelle! I tried it and it is easy to do...I wondered but never took the time to ask so I'm glad you posted this! (hey, what about pink though? my favorite color ....it probablywouldn't show up too well I imagine probably!

Runnergirl, would you mind if I sent you e-mail? I get I'm nervous about my appointment tomorrow. I've been looking forward to it so much but now I guess I'm just scared because I know I want to try something different to see if it will help more and well fear of the uknown I guess and thought depending on what she recommends to try I might want to get more information from you regarding your experience with SSRIs to build my confidence. Thanks!

I didn't mean to offend anybody about the pill-cutting issue. I don't say your doctors are wrong. I was just saying what I've been taught (i.e. if not scored, there is not an equal amount of active med in each half...you could get all of it or most of it or none of it in one half or anywhere in between and for me I'd rather be on a set dose). But, I also said if it works doing that, then it works. I will run it by the doctor myself like I said because I would desire a lower dose of the BB and if cutting an unscored tablet is how to do it then I'll be lining up for sure! I was going to ask about it anyway because I was curious how they got a pediatric dose for children (i.e. liquid or what?) anway so thanks for mentioning how you guys are doing it. Thanks Runner Girl for your additional support and information about the SSRI. Believe me if I try one again I'll be looking for you!

That's it really. I just wanted to thank everybody who posted under the who, what, where, and why thread. It is amazing to see the information outlined that way and very helpful for me as I prepare to explore other treatment options. Thank you all for sharing!

Tearose, I dont' have words to express all that I think. Keep peeking up out of that POTs hole and doing just what you are doing...pushing on and holding on and praying. I don't' know what MSA or PD is but did they rule out MS? I'm looking foward to hearing about your sleep study results too. I like your phrase "oscillate at a higher frequency"! You maintain such a positive attitude always...rub some off on me! I need to be more like you and be more positive and put more positive energy out there. You are an inspiration that will not burn itself out! You may feel physically fragile right now but your spirit is very strong...it comes through in your writing...and after all, that is the true essence of a person...the part that will last forever! You are in my prayers! Keep us updated please when the other results come in.

How I work is basically I believe because I work from home as a medical transcriptionist. This has many advantages, but I also agree it has disadvantages...namely, I'm on my own making my own schedule which is really great to think about but quite easy to get off schedule with eating at regular times, going to bed at a set time, waking up at a set time...I think overall a schedule helps people function and feel better and I haven't been able to be disciplined enough yet working from home for the past 2 years to actually stick with one. I wonder sometimes if it did contribute to my POTS flare last summer (since I was working from home for about 1 year prior to it hitting but was aware of feeling worse and worse over time before IT hit). Anyway, that is how I do it. I figure if I can't drag myself to my desk and prop myself up if I have to and type something/anything to make money I don't really know what life I'd have...we certainly can't afford for me to not work and even though keeping house and running errands and laundry and all the mundane things that must be done each day is a full-time job in and of itself, I just feel like I would lose something of myself if I didn't have any kind of job to apply myself to. Maybe if I felt healthy and good and could afford not to work it wouldn't matter as much (I'd fill my time with many great things I'm sure probably) but I think right now for me to not try would only give me more time to sit around and feel sorry for myself which I only do 1/2 the time right now so it wouldn't be a good thing. There is no shame if you cannot work. Many people with disabilities cannot work and there should be no guilt felt by you if you cannot. I know there is a thing called family leave act that can help you in a situation like this depending on the size of the company where you work (it may differ by state too, but I think it also hinges on the size of the company or something too). Anyway, I used to work at Medical College of Ohio myself 2 years ago and they are a union hospital and also a state facility so they adhered to the family leave act. I had 1 in place for a day or 2 off each month for menstrual issues if you can believe that but it is true and they could not write me up or anything for being absent. It is protection for people with chronic illnesses. Looking back, I think my menstrual problems were partially due to POTS but I didn't know that then. Anyway, good luck either way. You have to look out for yourself and get information to protect you on your job and/or look into disability if you have to. Sometimes there are free legal clinics that could maybe help answer some questions too.

Welcome Debbie. The symptoms you mention are very familiar here and yes it can make you feel nuts. I can relate to you saying you are not as active and stay home a lot. I hardly leave the house myself except for errands, etc., and feel like I want my true whole previous life back in many ways! It sounds like a tilt test would be beneficial in determining whether POTS is your problem. Nina pointed you to the thread of the other person who had IST so maybe that will help too in determining which is the problem. It is hard to find a doctor who "knows" about this stuff but there is a link somewhere where you can look and see if there are doctors near you. If not, you may have to travel. Many great places are mentioned here on the boards. I personally live in Ohio near Dr. Grubb's office at the Medical College of Ohio and he is really good. Usually, some neurologists and cardiologists will be knowledgeable of these conditions and also you might get really lucky and find a PCP who has some base of knowledge. If nothing else, break out your phone directory or insurance directory of physicians and start calling around and asking who has experience with autonomic instability issues and see if that leads you anywhere. I wish I could give you some better advice. All I can say is that I know how you feel...we all do...you are in good company here for support so stick around and say what you feel. It is very cathartic to share and realize you are not alone. Welcome, keep us updated, and don't give up. It can and does get better for many.