k&ajsmom

Hi Joy, I had several abdominal scans recently due to my gi issues and an issue with my liver, and to my knowledge everything was normal as far as organ enlargement. In reference to the circulatory shock, in my very undereducated opinion I thought that referred to an acute shock syndrome in result of end stage illness or trauma. I would imagine initial clinical work ups with that kind of shock would be significant in its findings. I am not in the medical field (obviously lol) but I think most Pots findings upon an initial basic workup would be fairly "normal" with its exceptions. I would be interested in hearing what somebody else has to say about this with more knowledge so I could understand it better. for me anyways its a little unnerving to read without a proper understanding. Thx for the post!!

Hi Star! I have the" deafness"in my ears, it usually comes on very suddenly and has so suspected link to posture or any other symptoms for me. Its like this loud, humming, ringling, deafening pressure that starts on one side of my face and one ear and travels to the other sometimes. Then it fades away in less than a minute. WHen it hits me when I am walking it feels very similar to the cranial pressure I get right before I syncope.Very wierd and alarming when it happens, the first time I was walking to the car and it happened and I thought I was just having a syncope episode without the normal warnings so I quickly laid down next to my car and it passed.... my neighbors must think Im crazy sometimes.lol In the beginning I had freqeunt utis however not since i've increased fluids. I never really thought about it being related to POTS though, just assumed if Im not retaining enough water = idea conditions for bacterial overgrowth, however I have read their are many people with urinary dysfunction with thier pots .... so ??? Take care =)

Hi CF, I know its been a while since you posted this and I was was wondering how things went with the new clinic in norfolk. I just found out about it yesterday and am considering giving it a go but I am self pay so wanted to know if you give me some feedback before I switch docs up again. Pm me if u dont wanna mention on here if you can. I would greatly appreciate it. PS I hope your doing well and improving, I admire your courage getting through a pregnancy and fighting so hard...I wanted another child and when pots flared into my life again I knew I couldnt handle it but you give me alot of hope... take care!!!

thx puppylove, any recommendations in or near va? I did find one review about him and saw the poorest rating was getting an appointment also gotten some other feedback from others pm's. So gonna keep my options open =)) THX {{HUGS}}

I try to get 5 or more, I try to take my sodium chloride tabs and sometimes they dont bother me but I have horrible gi issues so somedays I skip it and just grab some chick buollion and add some extra sea salt to that and its a bit easier on me. I snack on olives and saltines and pickles on bad days too on to help. Also those little packages of instant flavored mashed potatoes ya get at the store are loaded with salt , pottassium and they are gluten free, I cant remember the brand but there easy on my stomach when I cant eat anything else. Not exactly fine dining though lol

Ive been researching dysautonomia specialists in Virginia Beach, VA and have come across a Dr. Kamal Chemali. He is currently with Sentara Neurology Specialists. It says he came from the Cleveland Clinic and opened a Dysautonomia Clinic this year dedicated to Oi and other disorders of the ANS. I have read some of you have been to the Cleveland Clinic and wonder if you are familiar with the doctor and how your experience was if you are....I am self pay so I wanna make sure its not another several hundred bucks down the drain if possible only for them to say drink water and eat salt and send me packing....ekkk...its almost Christmas and Im getting grinchy giving all my money to our beloved doctors lol Ps I cant find anything about him online, makes me worry a little =/ Thank u!!!

I havent had any benefits from it, no increase in bp or decrease in tachy or other symptoms...yet, Doc may increase my dose next visit. Im only on .1 now and have been taking it for about 6 weeks. I also dont know what "kind" or cause of pots i have, I suspect hypo with some hyper symptoms also suspect mcas and checking into chiari. I also take an ssri with the florinef and no effects except improvement of gi issues from the ssri. I dont know anything about snri but could they be taken together?

however I am not sure how this applies to those of with LOW bp, I assume the risk is mainly having High bp for coronary artery desease, but I am not sure, just my opinion lol

"Before you begin to monitor your blood pressure at home, it's important to know that differences between left-arm and right-arm (interarm) blood pressure are common. Several studies have been done to determine what is a ‘normal’ variation between right and left arm. In general, any difference of 10 mm Hg or less is considered normal and not a cause for concern. Since some studies showed that the average interarm systolic blood pressure difference was significantly greater in patients with known coronary artery disease, it’s a good idea to discuss differences higher than 10 mm Hg with your doctor. When you have your blood pressure taken at the doctor’s office for the first time, it’s recommended that it be taken in both arms. But if you’re measuring your blood pressure at home, readings are often more easily taken in the non-dominant arm. If your home blood pressure readings are different from those taken in the doctor’s office, be sure to discuss this with your healthcare professional. Many factors affect blood pressure. The fact that there are differences in right and left arm readings emphasizes the importance of measuring blood pressure in both arms initially to prevent the misdiagnosis of high blood pressure. If one arm consistently has higher blood pressure than the other, that arm should be used to measure your blood pressure." - American Heart Association Hope this was helpful, it was for me =))

CM, I am so grateful as well for this forum, I remember standing on my front porch one night and asking myself, "am I losing my mind, I can't possibly be having all these symptoms and be ok?!" I really started to wonder if it was in my mind, but my bp and tachy reminded me very quickly I wasnt (completely) crazy and it was real...ughhh lol When I first got on this forum I NEVER expected to find so many people (or any for that matter) with so many of the same symptoms. I really thought I had a heart problem and denied to myself it was POTS, but all the similiar symptoms cannot be explained as a shear coincedence. Seattle, Im the same way and sleep is a beautiful thing. I have a hard time waking up because I dont want to wake up and feel bad. I look forward to it (sleep) just not the anxiety of getting there. anyways, thx for the post lemons, Im so glad Im not the only one even though I hate that anyone has to deal with this. I wonder if anyone else has those spasms??

Foggy, For me it is just like that. Atleast the air hunger part, not the spasms., or the gasping at night. They seem to be unrelated, I think. Sometimes Ill be sitting here and feel like I just stop breathing and to remind myself to take deep, slow breaths and destract myself with something. I thought it was physcological but now that others are having the same I dont think so lol I just read your thread and its very interesting, I think maybe that bp has something to do with it. I should check mine when I feel like this next time and see if there is any correlation.

lol thats a better description, I think Ill describe it like that to the doc cause its driving me nuts and I couldnt find the right way to describe it. He looked at me like I was crazy lol I wonder if a muscle relaxer would help..hmmm

Hi Lemons, I have some issues with sleeping since this started, When Im just about completely out, I wake up suddenly gasping. Like Ive held my breath for a bit and of course that makes me tachy. Sometimes it happens 10 times in a night. Once Im out Im fine. I also get these wierd little chest spasms, for a lack of a better description. They are not palps, and are right in the middle of my chest and slighty to the right and left. and always in the same spot. They are not painful just wierd and concerning slighty. They happen anytime I am relaxed and trying to wind down to sleep. I also get this feeling of not being able to get air in, not like asthma but I have read someone else describe it as their lungs feel like glued and heavy. Again not painful I do feel like I can breathe just kinda "air hungry" This also happens at bedtime or in a reclined position.These symptoms can happen all together or completely seperate with no pattern and all m ake me scared to go to sleep many nights..ughh

lemons, I am starting to think that upping my florinef may be the next step, I dont feel .1 has done anything besides causing headaches at first, they have gone away now. I am on zoloft at 100mgs now, with no results but getting my appeite back and reducing nausea, which is great but it hasnt help my increase motility, which is aweful =( My doctor is wary of BBs with me because my bp is just soooo low allll the time. He thinks it would cause more harm at this point, I think he wants to use a BB as a last resort. I am kinda with him on it, though Id like to have one I am not sure I can handle it. My one fear with upping florinef is becoming dependent on it. I know those with adrenal issues are dependent on it because there glands dont work properly but in my case would that happen IF my adrenals are fine? steroids of any kind make me nervous. Looneymom, I def agree variety is the spice of life with anything I do. I need to find something very practical to do that I enjoy (atleast a little) so I dont fall off track. I am glad I got everyones feed back to start slow. I think I was putting too much pressure on myself to get where I was pre-pots too quickly ( atleast in my mind) and thats why Im getting overwhelmed with the thought of exercise. Just do what I can when I can and keep motivated by all costs. Thank u !!

relax, Thats great you are not needing it anymore! I am going to talk to my doctor about this option, maybe it can be a tool to get me going, till I can introduce enough significant exercise into my regimen and get my diet straightened out. Thanks again and take care.

pumpkin, I think thats where my doctor is comeing from referring to not exercise until things are stable, but its been so long since I even took a walk outside my house I am getting worried that its making the tachy and bp worse to be bedridden, I think I am going to look into a recombent bike and just take it really REALLY slow and pace myself. I have alot of fear over the heartrate increasing too much although my doc says I "should" be fine with 200 bpm. I dont feel fine when its that high and doesnt take much to get there. But Im gonna make 5 minutes at a time my goal whenever I have the motivation to do it even if its walking around my yard for a few laps. My neighbors will think im crazy out there in my sweatpants and slippers lol I would love to bop around in a pool it sounds heavenly actually but am scared to venture out of my house at this point maybe Ill make that my reward in a month as motivation!! =)) Alex, My doctor has requested my records and personally I want my own set and its justing taking so long to get them. They have been in storage for 25 years lol I believe I was on florinef and sodium as a child but I am guessing off of foggy memories. The main thing I dont recall having as a child that I have now is the tachycardia and pvcs but again at 6 to 10 years old I may not have been aware that was occurring. Soo I def. agree its a good starting point if I ever I get there. Thanks for the link I am going to check it now and make my goal tomorrow (in the fashion of a true procrastinator lol) start devising a plan to get myself off this couch that I have grow to despise.. thanks again and take care everyone!!

Looneymom, SO sorry your son has to deal with these issues, I ws very sick when I was young too but I think I was a lot more resiliant then lol I thought of using wieghts, and I agree I am glad I didnt start that way. I think starting slow and steady is the way I am gonna try to go. And every other day too at first so I dont overwhelm myself with fatigue. Thanks for sharing and best wishes to you and your son, he is lucky to have such a good advocate for him.

Alex, Maybe I need to look into the effects of the ssri but its the only way I can achieve having an appetite. I will talk to the doc about it, maybe a simple dosage change would help. As far as testing goes, I was originally diagnosed with auto dysf. as a very young child and was a participant in a trial and believe I am in a textbook somewhere. I was tested rigoursly for weeks. Multiple TTT's, sweat tests, treadmills, heat and cold exposures, hypovolemic studys, however I can not remember much more than hating it and the 16 gauge needles that poked me with every hour. My mother has memory issues and cant remmeber anything about results other than I was medicated and outgrew the severity of my symptoms by my teenage years, until 7 months ago. I currently have had cautionary tests, ie: nucleaur stress test, echo, iodine cats, chest x rays, multiple blood tests and a 24 hour urine to check for a pheo. My primary took over from there and is eager to help but is inexperienced but he is trying which is more than I can say for other docs I have seen.Other than that they said You have pots no other tests needed. I have read a alot on here about other testing and want to pursue a more accurate understanding of what is happening but I am grossly undereducated in the medical department lol Thank you for your feedback I truly appreciate the time you took writing me back =) Relax, thank you so much for your response, it is so encouraging to know I am not the only one struggling with these issues. I am going to talk to the doc about starting some basic exercise like you have done to see if I can get a little stronger. The weakness I feel is overwhelming and discouraging and can not be good for working towards a recovery. I also may talk to him about midodrine, I tryed it in the hospital but they didnt send me home on it. Do you take midodrine everyday or just as needed? Dizzy, WHen all this started I very feebly tried a holistic approach. However I have huge malabsorbtion issues and have trouble digesting any raw foods, even cooked veggies.fruits & red meats, So I thought Id try starting with a brat diet and add some foods in from there, again didnt work. I will definatly research more on Wahls and paleo, maybe there is a trigger food I am ingesting and throwing me off. I am very suspicous of mast cell issues. I have horrific allergic symptoms, not spcifically too many foods, but to EVERYTHING else, although I dont have flushing.Iam on double dose of antihistimines and if I am an hour late taking one I immediatly have an asthma attack, I also get hives from the cold and am sensitive to smells and meds. Thanks for the tips I will look into more threads with holistic approaches and educate myself. THANK U again, your feedback gives me much needed hope and encouragement. {{hugs}}

Do you wear compression hose? They dont help me significantly but Ive read on here they help some alot. Ive also read alot about midodrine and used it while I was admitted,it helped keep my bp from dropping but didnt bring it up either,just kinda stabalized it at around 90/60 ish, maybe something to discuss with your doctor? I personally dont care for the side effects from it but some others seem to love the results. I know how frustrating it is and would love to take a bb for the tachy but cant hack it, Im sorta in the same boat as u so hang in there and good luck =))

Ok, so first of all, I feel very lucky to have found this forum and spend a lot of time reading through old posts and I am grateful for all the knowledge my little foggy brain is trying to absorb lol I have few questions and Ill try to be as clear as possible but I am having a rough time right now even thinking clearly, so bare with me. I am on florinef, sodium chloride,klor con, sea salt and gatorade and feel like I am still urinating more out than am retaining. My legs never change color unless in heat or I have walked a long ways and recover rather quickly when I am off of them or cool. I am also on zoloft that seems to do absolutely nothing but make me hungry at 4 am. I went from 50 to 100 with no effect which is odd since I am very sensitive to meds. My doc is treating me as if I am hypovulemic, with out any evidence of such. I was tested as child but dont remember results till my records come in and I am tired of waiting. I agree its a good place to start but I have NO improvment. However, I did recieve massive amounts of fluids during my stay in the hospital that completely corrected the heartrate but not the bp in anyway. Also I wear 30/40 compression extra firm Jobst stockings to my waist with not much effect if any on my BP. WHich stays between 70/40 to 94/60ish. There has only been one time they brought me up to non symptomatic range. I have been basically bedridden for 3 months and not able to much more than totter around the house for a few minutes at time. My standing hr is 180s+when I take a shower, with all the gear in place and salted up its about 140. Resting its normal around 80 to 90 on a good day and on a bad its 130ish. I look like a ghost all time I am sooo pale. I have chest pains without activity, just laying on the couch and with movement irractic heartbeats. I have read how important exercise is and I totally agree but I am becoming deconditioned now I believe, I want to push myself to combat the muscle weakness and lathargy but I am not sure how when I just roll over in bed and my hr is 120 So overall I am 3 months in to treatments that have no benefit at all!! <sighhh> So here are my long awaited questions lol first topic) Can I be hypovlumic if florinef and salt arn't helping and I am not showing signs of pooling, or are those two seperate issues altogether? Or do you think I possibly need to talk to my doc about increasing my dose? Has .1 ever helped anyone with hypo symptoms? second topic) Does anybody get a noticable rise in bp, or decrease in heartrate from compression stockings or florineff? Has anyone tried higher compression stockings than 30/40? third topic) How the heck do you exercise like this? is it safe with a structurally sound heart to push an already increased hr? Do you just push through it somehow and it get better? My doc says dont worry about exercising yet but I am losing ground fast a fear a longer recovery like this. (dont worry Im almost done) 4) can anyone recommend any tips to stear my doctor, whom is admittingly treating his first POTS patient ever, any specific tests (other than a TTT)? Thank you sooooo much if you made it through all that lol I truly look forward to reading what you may be able to enlighten me with through your experiences. {{{HUGS}}}

Thanks for your posts, I am coming to the conclusion I have inheritaed a predisposition to my POTS since its been since childhood and I dont thinks its idiopathic in nature, though "what" or how is such a mystery. I had about 7 years with hardly any symptoms , atleast not any that disrupted my life, I ran miles everyday, ate well, didnt drink and bam, one day at the gym palpitations and fatigue and my bp became hyptosensive again like when I was a kid. I am just so desperate to get this pinned down so I can start treating it more effectivily. I have gotta be able to leave my house one day and get back to work =( I have ruled out a lot and thinking I have hypo pots but with some hyper symptoms(quite a few) I still have a gut feeling theres more to this, being that I have horribly low cholesterol, pottassium, bp, magnesium, preterm births, horrific headaches, considerable memory loss and neck pain... as well as a suspicous family history... I wish I was as intellectual as some of you guys are , some of the posts take me hour to interpret the meanings lol and my docs are throwing pills at me and I dont honestly think they even know what for... sorry just venting now lol

Well I just learned something new =), I have never varied which arm I took my bp. I have always done it on my left. Today Ive been working so hard to get it above 80/50 and then I read this and tryed it on my right and its 92/60...lol I like my right arm better lol but I wonder which one is more of an accurate reading. I guess its so close it doesnt matter significantly. Thanks for the post!!

I drink two 32 ounce sugar free gatorades and then fill them back up with h2o and drink those...and then I float away...lol if I dont drink that much I feel very dehydrated by the next am.

Ive been really discouraged and feeling sorry for myself lately.I love the holidays and am super bummed that I havent even been able to decorate the house or take the kids trick or treating. And of course I am homebound right now so I missed Thanksgiving with friends but after enough moping around I decided to try on focusing on the lighter side of things so I can get into the holiday spirit and to be grateful for all I have and suck it up.lol Of course we are all grateful for our families and friends and other obvious blessings but what are the potsy things u are grateful for?? I am grateful for remote controls, other wise I would never be able to change the channel without a huge ordeal on my worst days and at 3 am when the insomnia and adrenal kicks in I would be stuck watching the exercise infommercials and that would be unbearable lol My fiance said he is grateful we could recreate the Thanksgiving verison of the Christmas Storys holiday dinner, Thanks China King( haha)

I think a lot of us have. I was told many years ago I had chronic fatigue syndrome and in the same breath the doctor told me " and cfs is just what people have when they need to get in shape". This was after I told him I was already diagnosed with autonaumic dysfunction as a child. Even last year when I was in the hospital very sick the doctor looked at me like I was crazy when I said I thnk its my autonaumic dysfunction progressing. He said he never heard of such a thing and it was probaly just indigestion and being dehydrated. ( which I was niether) I went through 6 more doctors,specialists included and countless trips to the er before i found one that knew what I was talking about and treated it very seriously so keep trying and be your own advocate and dont give up till someone hears you and takes u seriously. Theres a link under common questions I htink with doctors and resources i believe, worth a try.