Jackie

Amy - I also believe you can have high blood pressure with POTS and agree with Nina to think of it as a blood pressure regulation problem whether high/low. My mother who was diagnosed with chronic fatigue syndrome 13 years ago when it was hardly heard of has had low blood pressure all her life and now she is battling high blood pressure. My sister with MS who was a nurse before she was diagnosed with POTS and then later MS was told by a physician about dysautonomia that sometimes this happens because the body is used to overcompensating to keep the blood pressure up and then sometimes as a person ages you develop high blood pressure because of it. As far as shortness of breath, I had episodes like that before I had a major POTS episode last summer and was diagnosed. For me, it was sitting up for extended periods of time at my desk and talking too much interacting with people( i.e. on the phone, to family members, etc.) eventually I would just feel short of breath, dizzy/sick, and unable to think straight and too tired to even talk. Yes, lying down and being quiet helped. I didn't understand why I felt that way but looking back I think it was some beginning symptoms surfacing. I also had an episode of desaturation in the hospital last summer when my O2 sat. went down to only 92% but I felt like my lungs were "glued together". When I read about that symptom here I realized that was what I had...it was an icky feeling...like you aren't getting enough oxygen and a very accurate description of how it feels (i.e. glued together). Lastly, not all of my symptoms are/were relieved by not standing. I had even resting tachycardia but of course the heart rate was much much higher with any movement (standing, walking around), but it was just less so by lying down. Now I'm on a beta blocker, etc. and at night sometimes I still feel some papitations, etc. even while lying down. I guess my answer is yes lying down helps but doesn't totally take awake my symptoms altogether but helps definitely yes. Often during the day I just take 5 and lay down...sometimes 15! (or a 1-hour nap)...it helps my body regroup in a way I suppose. People correct me here if I'm wrong but many have mixed diagnoses (chronic fatigue and POTS, MS and POTS, chronic fatigue and NCS, thyroid problems and POTS/NCS...EDS and the list goes on) so it isn't impossible to have more than 1 thing going on or working in connection to destabilize your body. It seems to me that maybe people have this underlying predisposition or low-level symptoms and then something else acts a trigger to the ANS whether it be injury/illness, etc. and you get full blown symptoms. I don't know myself because I know my low-level symptoms looking back over my life and I know my triggers...but my triggers don't make sense and it hasn't gone away this time (the POTS flareup symptoms) so I just don't know how the puzzle pieces fit together. I think all of us want to know our underlying cause so we can get more accurate treatment instead of just symptom management. Anyhoo, welcome to the boards!

Welcome Sue! I doubt you will get the award for most questions asked because I'm hot in the running here with all my questions! but ask away so it will take the focus off me! (hehe). I can appreciate your situation with only being able to see Dr. Grubb once a year. My insurance approved 6 visits initially and I think they will keep renewing it because he is an out-of-plan specialist for me but still his office makes the appointments about 6 months apart (at least my experience so far and I was only diagnosed last summer). So, anyway, I know how it feels to be flapping in the wind. I love Dr. Grubb don't get me wrong but I guess I'm a real wimp here and scared and want a doctor to hold my hand a little more...somebody totally accessible...the nurses there in my experience are not good at returning calls and I was in quite a state from tying one of the meds he gave me and basically there was nobody to help me...so I don't want that to happen ever again and I'm trying to get in and see a new doc next month...one who I think and hope can be more hands-on in medication management, etc. and work with Dr. Grubb (because my PCP is well, a nice guy, but well worthless when it comes to POTS and I know that is horrible to say but well the truth). Good luck, stick around, and keep us posted. I just found this place myself a couple months ago and it has given me a lot of information and peace of mind...it helps to realize I'm not crazy and If I am...I'm truly in some fine company here!

I've actually thought of even trying something like this but because it mostly isn't covered by insurance I'm not really in a position right now. I think I would try acupressure or something though (basically I'd love just some deep muscle massage)...not sure I'm brave enough for the acupuncture or this bleeding thing. I'm sure glad it has helped you. I have to get over my fear of traditional medications before I could attempt herbals, etc. too

Tearose, my mother was diagnosed with chronic fatigue syndrome at the age of 57 and she is now 70. She has had horrible trouble sleeping ever since she got sick. She takes Ambien. Her doctor has recently planned to send her for a sleep study but it has been rescheduled because she had a heart cath. for a heart aneurysm and it really through her body into a spin out. If and when she has it done, I will be happy to share any information that comes out of it. We (my sister with MS and I) believe my mother suffers from dysautonomia (never tilted but she takes Ativan, Ambien, and atenolol for her symptoms) and though she takes low doses of these meds she doesn't feel well most of the time and would like to find out if there is an alternative to Ambien that will help her with her sleep problems. If you have one done, please share and when my mother has her's done, I will followup here and let you know if anything beneficial transpired from it.

Oh so you mean like when I was watching a movie the other night and called a giraffe a zebra (which made my husband chuckle) and honestly concentrated as hard as I could and actually could not remember that the animal was called a giraffe...the name escaped me. Or..the day I was in the store standing in front of the detergants and looking for Dreft and looked the whole shelf over numerous times and could not find it and a clerk came by and I asked her if they carried Dreft because I thought for sure that they did and she looked at me strangely and then pointed straight ahead of me as I was standing right in front of it and didn't see it....or how I forget how to spell words sometimes...hmmmm. I'm almost afraid to ask another question...sometimes I feel so vulnerable asking thinking somebody will think it sounds crazy, but does anybody's mind ever seem like it is racing and you can't think straight and get confused (like it is trying to process too much information too quickly)? I've had that before and have to go lie down and rest and it goes away.

I'm all for articles, books, pamphlets, whatever! I'm sorry I ducked out for a few days but I've had some bad days this weekend and still don't know why I'm feeling so bad again. Anyway, Goldicedance, articles sound wonderful. I can't think straight today so catchy titles are out of my grasp! Well osteoporosis has "the silent killer" title so maybe "Dysautonomia...the screaming disabler" (just joking honestly..it's a horrid title). When I was thinking about the book issue, I envisioned like an educational section (maybe incorporating some already published articles from specialists with permission) of what it is, etc., and then actual personal stories that people can read and relate to just like on the board (case studies for comparison so to speak). Julie Tremp a girl I met here on the board runs/ran a support group in my area and I talked to her over the telephone and she mentioned writing to various talk shows and news shows (like 20/20 ?) without success unfortunately. Maybe she will pop in here and enlighten us on how she went about it and such. I love the idea...I'm just sorry I feel too bad to think about it more right now. Just know I'm on board for whatever we can do and will try to brainstorm if my brain will cooperate in the near future

Hey hey, there is a girl who I met here on the board named Julie Tremp...Julie where are you?! who ran/runs a group where I live (in Ohio near MCO and Dr. Grubb). She could probably give you a great amount of information. If she doesn't end up seeing this post and answering beforehand, I'll shoot her an e-mail and tell her about you.

Duh! Of course! I gotcha'! Thanks! It makes sense to add that in. I defin. have that too. I have other symptoms I forgot to list anyway but it was a good overview. I really like the summary topic and am glad I posted it...it is going great and is nice to have centralized info to compare and I'm learning even more about people here (including what different abbreviations are!) Thanks

Can you explain a bit more what that feels like? I have this dull feeling in my head the past few days (the one I have described as a passing out feeling though my BP is not doing anything strange right now that I know of other than running a little low...the one I have described as coming on premenstrually and here it is postmenstrual period instead...). I just can't put it into words actually. I just wondered what "brain fog" was as I've heard of it often but never have heard a description by sufferers. I don't think it is what I have but my sister with MS has talked about it so I'm just curious I guess to know more.

Well, I guess I said it all...I was just wondering what is OI? Thanks!

I truly admire your strength and determination to have a child. I had my son when I was very, very young...16. So, I'm 37 and he is going to be 21 and I feel about 90! I finally met my soul mate, my husband, about 6 years ago and we were married in 2002. He has 2 children from a previous marriage. Although we love our children very much, it would be really nice to have a child together...a part of each of us. I do not feel capable however with my health or my nerves for that matter and we went back and forth wondering for these years now and basically did nothing to prevent pregnancy and I never got pregnant so I suppose to myself it is not meant to be and then I got sick anyway. I cannot imagine such a calm and bright-outlook person with a heart rate that high! That is so wonderful that you are not stressed by your symptoms. Bringing a child into the world is a wonderful thing and such a blessing. Good luck with the in vitro and when successful I hope you have a great pregnancy too! Keep us posted...I'll just live this one out vicariously through you

I'm so glad it went well for you! Yay!!!!! It sounds like you had a much better doctor than I and that they worked with you to make it as gentle as possible. Great!

I realize all of our stories are on this board, if not entirely, in bits and pieces. I was wondering if people would be willing to post just briefly their specifics. I forget who said what and who has what and who has tried which med, etc. without looking back through numerous posts. Basicallly, 1. Name 2. Age 3. Dx 4. Age at dx. 5. Where you live 6. Symptoms at worst 7. Symptoms at best 8. Medications/treatments, etc. that didn't work for you 9. Medications/treatments, etc., that do work for you Thanks! I'll go first. 1. Jackie 2. Age 37 3. POTS 4. Diagnosed last summer at age 36. 5. Ohio 6. Thirst/urinatinon, diarrhea, loss of appetite, hands/feet sweating, fast HR/low BP, palpitations, later leading to anxiety, panic attacks, sleep disturbance, tinnitus cerebri, night sweats, electrolyte imbalance, basically inability to function. 7. Best (?) Low BP (lower at times than others), sometimes aware of pounding heartbeat, mood swings (sometimes anxious sometimes depressed), sometimes a little hand sweating, sometimes the tinnitus cerebri (noise in my head), appetite up and down, feeling of lack of blood flow to my head (sometimes with low blood pressure 80s/60s, sometimes even at normal for me 100s/70s) worse with hormone fluctuations. 8. Ativan, Klonopin, Atarax, Lexapro, Imodium (all for anxiety dx before POTS dx except for Lexapro by Dr. Grubb which I couldn't tolerate). 9. Xanax (1.0 mg to 1.25 mg a day in .25 mg divided doses) and atenolol 25 mg once a day because it is all I've got right now. Would like to try something different.

I also wanted to say I'm getting to where I can't stand the transcription either and this past Friday was actually the first day in a long time I actually totally could not bring myself to do it. I have just come off a 10-day course of antibiotics for a sinus infection and my period just ended and honestly I've been sick as a dog all weekend. The way I felt Friday scared me and I thought oh no here we go....I've been resting all weekend, drinking, and even today at the urging of my husband who has been making an effort to be more understanding drinking and eating anything salty but I'm still having symptomatic low blood pressure this weekend (today 86/68) so I definitely think it is the blood pressure and the beta blocker...and I was so depressed yesterday. I have days like that and sometimes my blood pressure is real low and sometimes it isn't so I'm not sure if it is the beta blocker causing the depressive days or not. Does anybody experience this on beta blockers? I'm taking 25 mg of atenolol. I just feel weak, dizzy, and a bit off in my concentration...just icky all over and ache. Thank God today the depression is a bit better. I hate it when I get gloomy...I sure hope my appointment next month helps somehow. It seems I've been doing okay but there are times like this I realize surprise...it isn't gone. I don't know if the gloomy crying moods are hormonal or if I'm truly just turning into a whack basket...some days anxious and pushing to get a bunch of things done and then some days depressed and fatigued. God I hope it isn't mental. I'm sure it has been discussed before but I guess I need to hear it again...do others have moody periods like this and bad days and better days no matter what they eat or drink? I think my period has something to do with it in addition to the beta blocker...don't know which way to turn next.

hilfgirl33 - gotta say, the "you seem nervous" when your heart is racing out of your chest rings many bells.....I loved your thought about reaching into her chest and speeding her up and see how nervous she felt after a few hours (let alone days!). I've always felt the same way. Yes, I feel nervous, but eegads it is hard to relax when your heart is racing like you are running a marathon. Yes, it may not be right, but my sister, who is very religious, often jokes and says pray for them to have even 1 hour of understanding. If even a fraction of doctors themselves found themselves suffering from this I think we'd see a quick turn around in understanding, compassion, and treatment. We have A LOT in common!

Eeegads! Now after posting it and reading it I realize how crazy I sound. I feel too sick to sit up even right now and I still have to do my typing work for the day. What a nut I am...write a book! I do think it is a wonderful idea I can only dream about and ponder though, but what fun to think about. I think it is imperative we try to get some info. out there though and it is an excellent idea.

Four major thoughts. Florinef sounds like some serious and potentially horrible stuff and I'm glad I didn't try it. I was too afraid and since I already have osteoporosis and was having potassium deficient states at the time I can only wonder why that was thought to be given to me as a first try drug in the first place...hmmm...food for thought I'll have to think to ask the doctor next month. Secondly, I'd like to investigate the IV fluid thing as a simple outpatient treatment option and will ask the doctor about this too. When I was in the hospital last year for them to figure out "what was wrong with me" which was the biggest joke to date in my life as I was sent home the way I went in, I can say only one thing...the potassium IV fluids they had me on helped tremendously....after they took it away within a few days the tachycardia was worse and by the time I was home...BAM...I was flat on my back again with my heart racing to 140+. Thirdly, for goodness sakes Goldicedance...I'm humbled enough to shut up about my hard time reading what you have been through. More imortantly though, to travel and everything you must be doing much better now and that is good to know thank goodness...to see how far you have come from where you were at. Lastly though and finally and totally and most importantly, it is like a lightbulb going off....the writing of a book....how absolutely positively inspiring that is. Would you freak out if I actually got inspired enough to think to take that on, get the ball in motion, and compile our stories for publication...be our voice so to speak? I'm dead on serious here and not being mental. I seriously have always desired to be a writer deep down, but life has a way of leading you in different directions. I've dabbled in personal writing and even went so far into investigating at one time actually how one becomes a published writer...do you HAVE to have a degree and/or contacts to get in...I found out the answers are no you do not...if you can write and have a story to tell and can sell it to the publishing house, well anybody can do it...that is how unknown writers become known writers...not because of who they know but because they can write and they prove themself with what they produce. I've always been positively fascinated by people and their lives. Ask anybody who knows me how many times I've said "I'm going to write a book someday". Now take this a step further and realize as strange as it sounds that this illness to me has been as much a spiritual journey as well as a medical one and I keep coming up with the same conclusion...everything under the sun has a purpose...God has a purpose for all of us and for everything we go through. I have found since my illness and diagnosis that there is nothing more I find worthwhile or satisfying than to have an intimate relationship with God and to serve Him. I pray daily for Him to use me. What qualities do I have?...what did He endow me with?...how can He use me?...my goodness I can hardly clean my house or work, but still...use ME I pray. Well, if there is anything I can do it is write..l can write my butt off as you can see in my long posts that people probably stop reading because I ramble on so...I'm not saying I'm the most qualified or even qualified at all to take this on, but I'm wondering how crazy any of you would think I am if I tried? What if I take this idea and run with it? I have the desire to write and I have the desire for this horrible misunderstood condition to serve some positive purpose in my life. Lately I've pondered often how I can find a deeper purpose in my life, find out what talent if any I possess and how I can use it in service. Maybe this is my answer. I've always wanted to write a book....how crazy would I be? I'm seriousy going to think about this and if everybody is on board to share their stories I think we should do this!!!!! If not me, somebody else....absolutely it is a must!!!! How absolutely inspiring!

Hmmm, let me think how I can answer this to make it make sense. I cannot watch when I have blood drawn, but I do not feel as if I will pass out either. I just simply don't like the thought of it or watching it. I do not watch ER and haven't for a few years now because I don't like the graphic scenes. I don't feel like passing out or anything. I just simply never have been able to tolerate graphic images because sometimes they get stuck in my head and I find them disturbing. I had a hard time going to see the movie The Passion of the Christ because of this but did go and survived the violence by covering my eyes during the most graphic parts. I see this kind of movie much different than other things protrayed in movies and on t.v. When the O.J. trial was on years ago, I would have nightmares and intrusive images in my mind of the horrific events as protrayed in the trial. Is this mental illness? I don't know, but as for me, you can count me in as a person who does not like to watch nor hear about graphic stuff...I don't feel like passing out....I just can't tolerate it and it freaks me out...add in scary freaky slasher movies (never ever seen them) and even sometimes the news and even yes haunted houses (no fun there and I'm an adult). To put it lightly, I'm not an adrenaline junky and can't even ride roller coasters which I found out years ago way before POTS came on the scene in the truest sense of the word. Personally, I don't think it is related to POTS but it could be maybe in an adrenaline response to seeing upsetting images....not sure. Personally, I don't think you are going mad! If you are, you are not alone!

hilfgirl33 you are right! Wow we do have a lot in common! Long lost sister indeed. Yes, I am still a medical transcriptionist and I work from home but since I got "sick" last summer (and after 100+ days of constant tachycardia and being mistreated as anxiety I was finally diagnosed with POTS and unable to work during that time) I find I cannot type more than a couple hours a day where I used to be able to pump out 1000 lines in about 4 to 4-1/2 hours believe it or not. Lately, it has been taking me 3+ hours to do what I could most recently in 1-1/2 hours (approximately 400 lines) so my income is cut in half and I have trouble with words that I've never had before. I have always been an excellent speller and now sometimes...well it just isn't there. I have to look up drugs all the time because I simply can't remember whether they are capitalized or not and the neck and back pain is horrible. It is difficult to concentrate sometimes and frustrating. I also feel very "worked up" when I'm done typing to say the least, so I believe you when you say you can't work. There is something about the repetitive hand movement (especially when typing fast) that gets my body really going I notice but I can't afford not to work and feel constantly that I need to do more and do more and get so frustrated and angry at myself that I just can't seem to do it like I used to. When I was off work since I'm a statutory employee without benefits we got very behind financially so there is that pressure. I just try to do the best I can and pray it will get better. The only way this works for me is that 1. it is from home and 2. it is flexible hours. I do not have a set schedule. I simply commit to a line count and a day and make sure I get them done. I set my commitment very low so that I won't get in trouble for not meeting commitment and then I strive to go over that but usually don't. About my family, it is strange. We have such a mish-mash of health issues running through the family but it is like we are just now seeing the connections and the manifestations for most of us. My mother was diagnosed with chronic fatigue 13 years ago when it was hardly heard of and they treated her as if it was all hysterical female and anxiety because she had heart palpitations, tachycardia, and sleep problems, etc. It all started during a bout with mono and strep that wouldn't go away with multiple courses of antibiotics, etc. Eventually they diagnosed her chronic fatigue but she could not tolerate the antidepressants they tried her on so she simply takes .5 mg of Ativan a day that seems to work for her and now she is on a beta blocker because they have found that her entire aorta is enlarged (strange thing where they first thought it was an aneurysm but during cardiac cath they found the whole aorta to be enlarged). My mom is now 70. Since her now 68 year old sister just started passing out a few years ago and was tilt tabled and diagnosed with NCS and my sister about 5 or so years ago was first diagnosed with POTS and then soon after with MS, my mother asked her doctor if she could have this autonomic instability problem and his response was "yea, she could" but never offered to tilt her or anything so I guess his opinion must be so what if you do. My nephew who is about 30 has passed out since he was a teenager and was just recently diagnosed NCS and being treated within the past few years. Within the past couple years my eldest sister who is 42 was diagnosed with fibromyalgia and now with me my second episode of tachycardia (1 from steroids that took weeks to balance out after a few doses of beta blocker that I didn't tolerate) and now last year after taking calcium supplements which threw my body into a complete spin-out. I have other nieces who pass out, and cousins who pass out and another nephew diagnosed with POTS some years ago....I guess my point is this, either this stuff is just now coming on all of us or there is some genetic predisposition and connection in all these disorders and they are being triggered by different mechanisms and manifesting in different ways in each of us. Fifteen years ago, none of us had any of these problems and even I myself never took the time to think about it and look around me at my whole family until I myself was diagnosed. It is clear to me there is some genetic connection but the age of onset and diagnosis is so varied in all these people it makes me wonder about environmental triggers or something. If I were a person looking into this from the outside, I would almost think "well there are so many of them with problems that they are all rushing to get diagnosed and invariably find what they are looking for" but honestly I never made the connection in my mind until it happened to me even though my sister with MS came to the conclusion 5 years ago. When I got sick, I thought it was hyperthyroid honestly or parathyroid triggered by the calcium. I know this is getting very long but since you are an MT you will know what I mean when I tell you this, but having copies of my medical records from my inpatient admission last summer, I have to laugh (rather than cry I suppose) at the fact that one of the doctor consults in the hsp put under his impression "medical transcriptionist" (as well as other impressions, but this stuck out to me still as belonging solely under the social history and I found it inappropriate as if my profession was the cause of my symptoms....in like I was imaginging conditions I was typing about) haha! but honestly, they were ruling me out for carcinoid syndrome and a bunch of stuff that I've never even heard of or would have thought of in connection with my problems at the time or even typed about so it is hard to imagine you have something you don't know exists in the first place! I just thought you might get a kick out of that....Impession: Medical transcriptionist. This is what the insurance companies are paying doctors for! They also put in one consult that I denied use of diuretics and cathartics....yes, in all cases, when you don't know why the patient's body cannot regulate her fluid levels and she is having daily diarrhea, can't eat, has lost 30 pounds, has a pounding rapid heart rate, a 40-beat increase on standing, electrolyte imbalances, etc., certainly it is something she is doing to herself. I imagine there are people who are mentally ill out there who might do that to themselves so I suppose by the doctors in their humanity and lack of knowledge not understanding they have to take into consideration the fact that I might be doing it to myself, but I honestly tell you that is the worst feeling in the world to realize that they were secretly suspecting I was doing it to myself and it hurts to think of it even now. I was never so sick in my life and never EVER want to go through that again. That is why I take the beta blocker and I take the Xanax against what I WANT to do and that is not put any drugs into my body and fight to keep moving because those 100 days felt like a lifetime and I'm not going back there if I can help it. So now I'm off on a ramble, but thanks for listening! I'm still in the stages of acceptance and whenever I think of last summer I just get upset all over again.

I'm not sure if my nephew was on Florinef or Midodrine (or are they the same thing by different name?) but he had scalp tingling which he was told was a common side effect.

I have heard of Ritalin being used for POTS. My sister was diagnosed with POTS before she was diagnosed with MS and she was given one dose of Ritalin by a physician she was working with at the time (as a nurse) who is a specialist in NCS/POTS. She didn't report feeling anything bad from it, but then again, my sister, bless her heart, I believe inherited more of my father's genes than my mother's and can take just about any drug without a problem. Me...now that's another story...so that is why I'm always leery. It sounds like it works for you so good for you. I myself am constantly battling fear of addictive medications but when it comes down to functioning what is a person supposed to do? For me, it has been to take chances and it has been the hardest thing I've ever had to do. One doctor keeps giving me the analogy of diabetes and insulin, etc. If you had a condition like that and HAD to take insulin, would that be considered an addiction? If something helps your body do something it is failing to do automatically, then I suppose it is needed....but scary still? yes at least to me. I'm glad you have found something that works for you and that you only have to take a small dose as needed without side effects. Kudos!!!

Futurehope...I did have rebound anxiety to Ativan (that was initially given to me at the ER where a nurse literally scared me into taking it in the first place when I've always been more afraid to take something than not...she said I would truly have a heart attack and she has seen it happen....it was the old "anxiety diagnosis" and ignorance on her part (and my foolishness and desperation) but that is water under the bridge now...but anyway the rebound anxiety was to the point that I went and found a psychiatrist to help me get off of it because nobody was doing anything for me. Of course and possibly unfortunately, I ended up on Xanax but I have not had any of the same reactions to it as I did to Ativan. How did you stop taking any of them (i.e. cold turkey?) and are you taking antidepressants or anything else instead? I think they are all horrible meds (benzos and antidepressants) though they work great for many people but I desire not to take any of them but I'm afraid I'll end up where I was last summer totally not functioning so I'm taking this risk....I'm so equally afraid of all the psych meds it isn't funny.

Me too. Just last night I was trying to relax on the couch and I was biting my nails (bad habit I know) but I realized my hand was tremoring sporadically. It was strange. I've also had times when my legs will shake (one example...while sitting down, if I lift my heel up and the only part of my foot that is resting on the floor is the top part and my toes.....my leg will shutter about sometimes). I was going to start a new thread to ask this question today, but it is pretty much related to what others are saying here so I will post it here. Sometimes lately I have noticed this sensation in my legs I can only describe as like tension. It isn't exactly tightness and it isn't exactly cramping...it is just an odd sensation of I guess a mixture of these things...like they are fighting themselves to relax. I have for years very sporadically experienced extremely bad leg aches sometimes that feel like an aching right into the bones but this is different. I also moreso lately have much more aching in my shoulders and low back and legs that I've started to wonder about fibromyalgia and stuff but then I just push it out of my mind and take ibuprofen. My sister has MS and my mother has chronic fatigue and my other sister has fibromyalgia....it gives me reason to wonder but I don't want to know in some ways sometimes but I realize not knowing doesn't make it go away...but then I've learned that knowing doesn't make it go away either (POTS) so what would be the point of more tests. Anyway, strange sensations...wow I never cease to be amazed that I am not the only one in the world who feels these things.

If they allow you to work from home it might be a feasible solution. The only way I'm working is because I work from home with a completely flexible schedule as a medical transcriptionist. I thank God I have this opportunity but sometimes forget to be grateful for the opportunity because work is still work and it is hard sometimes to sit at the desk and do it. The wireless keyboard and mouse thing sounds like a wonderful idea too! I have a laptop computer so if it came down to it I suppose I could prop myself up on the couch and type. Either way I know this is going to work out for you because either they will have to help enable you to work since they believe you can or they will have to accept the reality that you can't and this is their catch-22 situation and not yours. Best of luck and please do keep us posted. I wish you much success and strength as you endeavor through this challenge. Either way it is going to work out...you will either be able to work and that is great or you will not and that is okay too and they will have to provide the disability. Just do what you can and let it all fall into place.

Sure love to hear good news!