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Starting Florinef tomorrow, ive been off all meds for about 4 weks now (midodrine/.lexapro) and im really hoping this will suit me cos im crashing hard and fast now! Felt horrendous this evening took my BP and it was 76/48 What exactly should i be doing to give this med the best go...i.e how much salt/water daily? Do i need extra potassium in my diet? (I know i heard/read something about this somewhere i just cant remember!) and anyone who is on it do you get potassium levels checked regularly? im starting on 1mg/day. Any tips much appreciated!

If you had to choose 3 of the most helpful alternative/nutritional supplements for POTS (fatigue inparticular) what would they be? I find there are alot of different suggestions for supplements on here that people have found helpful however I cudnt afford to buy them all on a regular basis and im sure id be terrible at remembering to take them all! Id love to get an idea on some of the one's that people are taking most regularly and finding most benefit from!

Hey all.... Finally got to see a specialist.......this appointment was like a dream come true! And worth every cent of the slightly astronomical fee i hadto pay! She said I tick every box for vasovagal dysfuntion/NCS/dysautonomia and am very symptommatic. I got a POTS diagnosis last year but no proper testing to see what exactly was fueling it all. She did say that she feels POT's is becoming a 'slap on label' given by docs who have little understanding of Autonomic dysfunction or appropriate testing and feels im more Vasovagal. Im unsure about this myself but im sure further testing will point us in the right direction. Im not hung up on the label i get I just want to kno exactly whats happening in my body and how to fix it!! She started me on Florinef (which I hope will suit me better than midodrine did!). She's ordered a 24hr urine collection, 24 hr BP monitor (ive been asking my docs for this for over a year now!) and another TTT with GTN now (last one was with Isoprenaline which she said is outdated now ???) However it directed me down a different line than I had been researching before and I discovered some interesting stuff! My worst daily presyncope symptom is dry wretching/heaving. Ive tried to explain this to docs before and I always get the 'nausea and vomiting is all part of near fainting' line. But I never ever feel naseous and dont vomit...just wretch severely. It has always felt like a sudden reflex reaction. Discovered that Stimulation of the Vagovagal reflex stimulates the Vasovagal nerve to slow down the heart rate, one of the ways to stimulate the vagovagal nerve is to induce the gag reflex!!!!! Seems my body has sussed its own way to slow down my heart rate!! Sure enough once ive been wretching for a few mins it stops of its own accord and my heart has slowed down. Also my last TTT i got severe twitching/muscle spasms (didnt faint at all) I didnt pay any heed to that and no one else did either...but ive now discovered that this is a significant sign of vasovagal dysfunction when doin TTT! I just want to know has anyone ever experienced this/know anything about it/had doctors discuss it?? Would love some insight from some of ye that have lots of experience with these things! im only picking up bits and pieces as i go and trying to make sense out of it al!

thanks guys for your support!! BUT I spoke too soon !! bin a bit rotten for last two days hadto resort to popping midodrine again. dry wretching/vomiting alot at work. And i forgot how bad the brain fog and confusion gets when im off meds! Keep losing stuff, forgetting stuff, cant find right words etc etc all V frustrating. ON a good note I hadto ask the ward manager yesterday could i go off the ward for a cuppa and to take meds, started to try to explain POTS to her (i usually make a mess of it!) and she said...Oh god my son has something like that...and he see's a specialist for it. Turns out he has Neurocardiogenic syncope...and the specialist is the lady im seeing next week that ive waited a year to see. Apparently she is brillant, will give as long as it takes to take a proper history and is proactive about doing all the necessary tests and trialing meds. So if it wasnt for My POTS flop yday i wouldnt have gotten all this info. it certainly picked me up to think i mite be close to getting someone that will help me properly sorting the right meds. FEDUP of trying to do this all myself

Ok so im a little confused as to why this is but....... I recently stopped taking the midodrine (bou 2wks ago) and lexapro 5mg/day as i will be going for more tests soon and wanted to get an accurate idea of where everythings at. I've been feeling much better since i stopped taking the medication...no headaches at all, no energy crashes really. Heart defo FEELs more tachy at times but is not skipping as much as it was when on Midodrine. Im also losing weight again (I dont need to, i always lose weight when tachy is uncontrolled and im constantly starving!!) Anyway I took sitting and standing BP today...normal! AND more importantly this morning my HR sitting to standing was 80-108 (much less of a rise than previously) and this evening it was only 74-89 max! ( I dont take bp/hr that regularly...i always go on my symptoms and maybe a quick pulse check..think id get obsessed if i done it regularly) This was v surprising for me!! Im hoping this stays the same...Dont wanna get my hopes up thou that I mite be on the way to kicking pots and that alot of the rottenness ive been feeling has been side effects from the meds!

I cannot answer all your questions just know that i am currently experiencing something similar to what you have said! Ive Discontinued Midodrine and reducing lexapro at the moment for further testing also. There are defo pluses and minus's to it. I know i definately don't feel any worse without the meds but not better either.... Just different symptoms to be dealing with daily. Less migraines/brain pressure feeling, 'dips', dizziness...but more of my main presyncope symptom (vomiting/dry wretching) and tachycardia is bad again. Also the fatigue is worse in some ways...its more constant. Saying that, I found the midodrine gave me a great rush of energy but the dip after 3hours was extreme! Definately not missing that part! Your question about how do you know when its time to get off them....i don't kno! But im hoping that for me the next couple of weeks will tell me whether im worse on or off them! POTS is so changeable and I know in the past when i came off them for a short while and didnt feel too bad it all caught up with me later and i ended up in hospital! I hope someone here mite have clearer answers to your questions, im not much help but i am experiencing the same thing!

Dont know about its effect on nerve pain but I was on it for awhile and personally speaking it was an absolute nightmare to get off! Not sure were the symptoms i got while on it side effects from the cymbalta itself or POTS related....tremors, muscle spasm, twitching, pins & needles. etc etc etc! Ive done my fair share of going on/coming down off SSRI's over the last 10yrs and this was by far the most difficult. Just something to be aware of before you start...but as we often see on here these things can be very individual too.

Thanks Corina but my GP is awful...admits she knows nothing about POTS but has no interest in finding anything out for me either...last time i went into her bout all of this I left wit a script for Panadol to kill the pain and nothing else ... I have no specialists either to ask (until may anyway). More or less on my own with this until then! The last advice i got from the medical consultant i was seeing was 'medicine isnt an exact science and to ' just mess about with the midodrine' n see how i got on. No one i talk to seems to really know anything about POTS/Dysautonomia...I just hope and pray this Specialist im waiting to see will be of some help!

hmmm just read up on Pulse pressures there...slightly worried now!! Seems Midodrine could be widening my pulse pressure....71 yday with the severe headaches (increased cerebral pressure?) I also definately experience an awful lot more ectopic beats when i try to increase midodrine. Are these all signs i shouldnt persist with increasing??? Im sooo confused!!

Hey all! Im still relying on Midodrine to try to control symptoms until I see a specialist in May, ive not had much luck with this. Ive never been able to increase my dose past 2.5tds cos of extreme migraine headaches and what i call Midodrine 'crashes'. Im giving it another go now. I was afraid the severe headaches when i increased 5mg was from it pushing my BP too high....recent TTT showed I didnt have OH...But now im wondering about that too!! Yday the severe migraines started about 3.5hrs after taking the 5mg dose...i took my BP, it failed to read it twice and then picked up at 125/54. (these are proper medical BP machines, I work in a hosp). I know people in the past here have talked about the difference in Diastolic and Systolic pressures can cause problems even when your not classed as hypotensive. Can anyone fill me in on this?? I remember on my TTT when i was tilted looking at the BP screen and my BP was 136/45, the clinicians who were doing the TTT had to google POTS before i went in. That should tell enough about what they knew about it! I thought the report would give a printout of the BP readings but they didnt, just said I didnt become Hypotensive :/ . So now im wondering are these headaches i get the start of my BP dipping. Has anyone found anyway of managing/avoiding these severe headaches i.e take another dose as soon as it comes on. Or is it just a matter of perservering when it comes to Midodrine and fight thru them. Midodrine manages my tachy very well i havta say, and lessens the fatigue. Just when POTS gets bad the 2.5mg is really not enuf to manage it. Im hoping the specialist will add in another longer acting drug with the midodrine that will help keep things more balanced for me.

Thanks for everyones responses here! bin working and sleeping ALL the time wen i was off the last few days hence the delay on replying! Ye all have described each thing im experiening with Midodrine here! At least im not on my own or imagining it so! Raman...Rollarcoaster is defo the right word..up one min and down the next! I think its worse to try to manage than my pots symptoms nw. I think for me the cure is definately proving worse to tolerate than the problem!! Althou its nice not to be vomiting everyday at the same time...the midodrine definately controls the tachy and my presync symptoms better when it peaks but then causes a list of other problems! Ive been on an SSRI and the Midodrine for the last year to try to manage this POTS, my doctors own words are to 'mess around with the midodrine nd see what helps'!......IT DOESNT! And surprise surprise im about 10 days into the increased dosage...im completely fatigued and the really bad migraine headaches have kicked off another symptom of increasing dosage i get that doesnt seem to lessen if i try to keep goin! stuck in bed this morning in a dark room with my eyes closed it was so severe.....Think it is time for me to give up on midodrine now and find something else! Rach73...i get exactly those problems wit it too! As soon as it starts to wear off the post prandial symptoms are awful. For a long time i thought the dry wretching/vomiting I get with pots was something to do with the type of food i was eating but i could never find a pattern/trigger foods....in fact its not!! its just that my tachy gets waaay worse after eating and when i stand up from the table it kicks of the vomiting/dry wretching . Also the night time pounding on moving or just sitting in the bed is much worse...it seems i get a rebound more extreme tachy/hr response when the Midodrine wears off! Thanks to you too Rach73 for stating that.....wasnt sure if this is a usual occurance for pple on midodrine/wit pots too!! Can anyone fill me in on Mestonin and what it does? Im wondering if i should have even been put on midodrine.....tilt table test shows my BP stays stable, if anything it went up when i got very tachy. Im worried that the severe headaches i get when i try to increase the dose is from high BP...also experiencing black spots in front of my eyes at times over the last week or so

Just a quick query bout meds..... Ive increased midodrine to tds (2.5) again..find it hard to tolerate this drug but its my only option at the moment until I see a specialist in May. Im Coping with the serious headaches i get but wondering do other pple find there's a great burst of energy when you take Midodrine and a crash 3-4hrs later? Tachycardia is better controlled with increased dose and seems to be improving my presyncope symptoms a bit better (daily vomiting) but my day seems to filled with moments of great energy bursts followed by trying to drag my eyes open and force my body to keep moving while at work!! Its v tough to manage and id say pple wil start to notice soon... im full of energy and fun one hour (v bubbly personality) followed by being very quiet and subdued the next as i am trying to pull myself awake. anyone found anything that can manage this a bit better whilst taking midodrine?

Just having a bit of a rant....i try not to be miserable about this all but its 2yrs on and im getting nowhere except wasting alot of time and money on drs visits in clinics! Im sure everyone here has been thru the same thing and im guessing that hitting this wall at this point is fairly normal. Im fed up of feeling like rubbish and cant get anyone to listen/help me manage the symptoms better. Ive vomited/wretched nearly everyday for the last two years...its my most severe symptom (dont know why its happening!) and now a hiatus hernia i had years ago that had recovered is acting up again. Awake at night and vomiting with severe acid reflux, nausea and pain. Feels like my system is crashing again...the fatigue is starting to overwhelm me, constant flitting joint pains are back and the terrible stabbing pain in my right kidney area that no one could tell me what it was a year ago and still cant now. Fobbed off with musculoskeletal (its defo not!). Postural HR fluctuations are getting more extreme again...68 up to 124 on standing. Ive been taking midodrine 2.5 bd which is all i can tolerate without terrible migraine headaches but it seems to be given me a big burst of energy for an hour or two and the crash then afterwards is awful...dont kno whether i should keep taking it at all...not really helping things now! Im shattered and losing the will to keep trying to find out why i feel so rubbish all the time when no one is listening! Sorry for being miserable guys but no one understands this condition here...its sooo impossible! And friends/relatives really have no idea how awful i feel all the time...i try not to complain too much cos i kno the dont understand and am afraid of the 'attention seeking' label!!

Thanks Everyone! Thankful...I had a small bowel follow through last year and it showed nothing! I'm going to try to start cutting out some foods and see where it gets me......but cant cut out everything so dont know where to start with it! I have a history of a pretty severe eating disorder which im fully recovered from now but any strict 'diet' stuff could send me astray...Ive been reluctant to deal with this by cutting foodstuffs out of my diet for this reason. Was hoping i could identify the problem another way! But as they say...If Needs Must!! Jangle! Thanks for your imput.....i have a feeling that I may not find out the answer to this either...im hoping it will stop soon thou, two years and counting now, its gettin frustrating! It doesnt seem to follow any pattern or particular foods. Bella Mia : Large meals defo makes me worse too! im terrible with keeping a good routine, but small frequent snacks seems to be the way to go. What nausea med are you on? I never feel nauseous thou...i just dry wretch all of a sudden. starting to wonder if I went on some stomach antacid would it help ...oh my poor brain...lotsa wondering and never any answers!

Hi All Ive been on a trail to rule things out to find whats causing my daily wretching/vomiting (two years and counting now!) So far....my BP is stable (ttt last week) so my POTS is just that...tachycardia (I thought maybe i was vomiting/wretching when bp dropped) Ive been taking my blood sugars regularly and so far no hypos...on fasting or 1-2 hrs after eating. But after ruling these out, its cleared the woods as they say and im seeing a pattern. Im wretching/vomiting 10-15mins after eating but not after every meal. Im now wondering if im allergic to something im eating/ingredients in food and its nothing to do with dysautonomia. Any advice on Whats the best way to go about testing/finding out exactly what it is?? Theres so much stuff out there on allergy testing i dont know where id start!

Yup Defo for me too! Couldnt understand how my symptoms got so much worse when I went back into college after being out on hospital ward experience last semester. It was the getting up and down every 30-40 mins in classes. When im on the wards im constantly on my feet and moving so my body, althou tachy, doesnt get put thru as much fluctuations with Sitting-standing and vice versa. Defo less symptomatic when im not doing that!.

Hi CC Unfortuntately (for me anyway) i think the Fatigue just goes along with the POTS and cannot be treated, unless theres something out there ive missed! I think the level of fatigue certainly depends on how well controlled the symptoms are...if u are experiencing alot of tachy the body tends to tire alot quicker.Sometimes whether symptoms are good/bad it does not matter...the fatigue can just hit. I havent had it for while and suddenly again this evening it hit like a thunderbolt and I could'nt move from the bed. When i say to my family "ive got that 'hit by a truck' feeling" they know what im on about now! Its horrible and certainly one of the harder things to deal with cos it can be very disabling. I try to manage the general fatigue of pots (not this more extreme fatigue) by making sure i get enough sleep, on my days off I dont run and race around doing things that are really not that important....i tend to try to chill out on the couch with some dvds and give my body as much rest as I can. Suppose there are diet related things that can help with the fatigue i.e minimising extra strain on the body by keeping a low sugar diet....im not at all good with the food related things tbh...maybe someone else here could give some pointers. I really do understand ur frustration and upset with this...ive been thru it and not that long ago. It does my head in, im a very strong minded stubborn person and tend to go go go! Its been very difficult to accept that there is little i can do about the fatigue, its part of it. The only control I really have is try to minimise the extent to which I have to experience it. Hope its of some help CC. Chin up.....and dont be afraid to ask any questions here. Ive found there is always someone who will answer!!

Very Interesting Poll!! Despite my best efforts at trying to stop myself....I come from a long line of extremely high achievers, insane perfectionism and a motto of no matter how good ya do ya can always do better. Live life in the fast lane, probably a stress Junkie. I reach for the stars and when i get there ive already dismissed the achievement and moved onto the next thing The long line of this personality I come from (mainly women) comes with a long list of non descript ailments, neurological dysfunction and autoimmune disease. Multiple Sclerosis( my 23 yr old sister), Motor Neuron Disease(grandmother), Pernicious Anaemia (cousin), Chronic Fatigue Syndrome( mother and also ?POTS with her too!)....the list goes on! From generations back i.e my great great grandmother ( on one side) the women all (similar personalities) have had some form of neurological/autoimmune problem. Must be a link somewhere....my theory is (im a midwife i als go back to the roots!) the high stress hormones/brain firing of a person with this personality type may disturb normal chemical/hormone firing/levels in the fetal brain predisposing the baby to some of these problems later on in life?? It is not something that could be picked up on in the infant or quantified/tested for but the infants brain from the offset is firing to the same level as mums. On the job we als say whats happening for mum is happening for baby, if mum is tachy a baby will be too, same goes for high/low temps etc. Makes sense that the same theory applies with stress reactions. Its vague but i would just love to do my own mini study on it sometime to see!

Thanks so much sue for all that info!! Im so surprised but happy to read what you wrote about the adrenaline surges and the nighttime hypos!!!! I regularly wake up during the night very tachy and with that 'surge' I think ur talking about. I nearly always feel very hungry when I wake but manage sometimes to dose back to sleep again. More recently ive taken to having snacks beside my bed and a glass of milk...otherwise im gettin up to eat at night to relieve the symptoms. Ive never mentioned it before just put it down as another crazy Potsy thing but thought it strange that i was tachy when lying dwn given that POTs is associated with upright posture. The hypo's that were picked up in the hospital were not adressed but dismissed rather quickly. I have a past history of an eating disorder(im years recovered now) and I over heard the conversation outside my room about whether the docs would do the appropriate tests or not...it was quickly written off as 'sure look at her history she's probable just not eating'! To say i was upset would be an understatement. Until i have proof of the hypos myself and get a good pattern in a diary I wont say it to em again....ya learn alot along the way!! So thanks for your guidance on whens the best time to take them. I think when they diagnosed the Pots the gave me a shot of cortisone and came back to take my blood a few hours later?? dont know what this was for...but dont think i have had the morning cortisol levels checked ever. Thank you so much for that info sue...i hope this time some of these pieces will fit into place. The daily vomiting is far worse than the tachy and it just keeps getting worse. I am desperate to find out exactly whats causing it so I can work on managing it better....2yrs with no answers or suggestions and daily vomiting...its hard to keep positive!

Chaos thanks for post the test took nearly an hour so im guessing thats the full job! they gave about 10mins to get accurate resting stats and hook me up...20min tilting. Then put me back down and put Isopro??something like that into me to pump my heart more and tilted for another 20mins. Seemed v thorough. BP didnt dip...when they put the drug in my heart rate hit 160bpm I think and i started to shake and twitch then....at this point i became HYPERtensive. Ill havto suss the meds out over the next few days...im not missing the headaches that come along with the midon thou

Thanks! Im reading up on this now and the symptoms etc sound oh so familiar! Postprandial reactive hypoglycaemia....a very definate possibility for me i think! My last hosp admission it was discovered my BS were just 2.8-3.2 2 hrs post meals and on one occasion just 2.8 an hour after 4 biscuits and tea . Glucose monitor is on the way in the post and im going to keep a diary for next 2 wks....luckily I have an appointment with an Endocrinologist on the 23rd, may get places with that! So I have got a question for you if you dont mind : Any idea how often/when i should test BS if im trying to discover a pattern myself? I get very hungry always 2-3hrs after eating....my mates joke all the time they dont understand how i can stay so slim when im always snacking! But if it is reactive hypo's im in a vicious cycle. Also is it common to have nausea/wretching/vomiting with hypo's? I also get very tachy when the nausea/wretching is coming on.

V Confused and Frustrated after my first Proper TTT today. Suppose I was hoping it mite show exactly what was causing my most frequent and severe symptoms and it didnt. Firstly.....Im defo Potsy HR 68-72 on lying and on 70degree tilt jumped to 107bpm and steadily increased over the following 10mins to bout 120bpm But NO orthostatic hypotension, BP fluctuated but didnt dip! Apart from feeling my heart pounding like mad/irregular as it usually does and some twitching it did'nt bring on the other symptoms I experience. Ive had two theories A) My BP has been crashing which has been causing the daily sudden onset dry wretching/vomiting that I have had for the past two years or B)Im getting regular hypogylcaemic attacks which is causing the above symptoms. ?Reactive Hypoglcaemia?Hyperinsulinaemia? Ive never fainted, from time to time feel the usual wooziness of POTS along with the overwhelming fatigue, twitching and some other various non descript symptoms. Now OH has been ruled out im onto checking into the blood sugar theory!! What im confused about is : I stopped meds 3 days ago for the TTT - Midon 5mg OD and 2.5mg OD, Lexapro 5mg. I dont feel any worse or any better....prob slightly more symptoms on saturday but overall not much difference at all. So... If Low BP is not a problem for me should I really be taking the Midon at all and could it be making things worse at times? I went on the Lexapro just to see would it make any difference (had to convince doc on this one!) Think it did initially but don think so now...Any point on staying on it? Wud rather not! What do others with POTS without any other diagnosis take to treat the Tachy Any advice gratefully received guys! Oh also if there is anyone who has experience of hypoglycaemia related to this any advice on what sort of testing I should be asking for? Ive decided to take this into my own hands and figure out as much as I can by myself...seems ta be the only way to go!!! Thanks

Thanks all you guys for your above posts and apologies in delay in gettin back on here...Im working hospital shifts days/nights at mo so when im not working im sleeping! I got my TTT date yesterday...for this MONDAY! So I have stopped meds for the moment and am going to see how I get on...althou already today im quite tachy so Ill just have to gauge it over weekend. Im nervous about this TTT , to say the least!. I have had no autonomic testing at all since i was diagnosed with pots via the poor mans TTT last year and have just been consistently told to 'mess around' with the Midodrine to see what dose works best for me. Its very hard to manage it with no guidance or no medical opinion based on accurate knowledge of the condition. Im hoping this and the specialist referral I have gotten will get me places althou im reluctant to get my hopes up to...the medical professionals are difficult to deal with at the best of times. I have notice there is a direct link for me between hormone cycles and symptoms but also meals/food and symptoms. My most recent stint in hospital the nurse decked I was hypoglycaemic just 1-2 hrs after eating...but yet again nothing was done. So Ive bought an online blood glucose meter and am going to try and figure this out by myself! Anyone any knowledge or experience of hyperinsulinaemia/reactive hypoglycaemia that could give me any tips? Tbh I think I have something going on with my Pituatry thats messing up hormone levels, kicking off serious pots symtpoms at certain times and also causing the hypogylcaemia......Try telling that to a doctor thou and you get that familiar...'shes over anxious' look! grrr

When I was at my worst bout 1.5yr ago and still chasing my diagnosis I got Costocondritis....severe and suddenly! I dont think i have ever experienced so much pain !! Couldnt move in bed for about 5 days. The back and shoulder tip pain came a bit later as it improved but couldnt breath with the agony of it. Now i know I have POTS im assuming its in some way related cos its something which seems to crop up now and again here. Im still chasing further diagnosis to see if there is anything Triggering POTS or is it just on its own (i suspect not!) so I really dont know where the Costocondritis would fit in in terms of conditions!

Hi all Thanks so much for all your replies to this post its bin a while since I was on. As of today I managed to be taken seriously by a new GP in the practice who has referred me on for a proper tilt table test and following that to a specialist who seems to be most up to date on this here in Ireland. Needless to say he was desperate to get me out of the office as quick as possible cos he didnt have a clue what POTS was and heard me vomiting just before i went into him (this is my most common presyncope symptom)...he was terrified I was contagious or something :lol: !! worked in my favour! Getting the TTT done privately and will get specialist on the public system(free) there will be a wait but sure ill get there! Just one question thou...for the proper TTT do you come off meds just before the Test or just continue as normal?