s-pot

Ive never fainted (yet!! feels like its coming closer and closer thou ) I literally feel the blood drain from the top of my head down and for me I ALWAYS start dry wretching....pretty severely but never vomit. Seems the dip kicks of some brain recepor that engages my gag reflex! But I reckon I dont faint cos the wretching comes on so quicky and hanging my head over the toilet gets the blood rushing again ! Also get ringing in my ears, dizzy, black spots in front of my eyes. Interesting Post...i always wonder why some faint so regularly and others not at all!

I was diagnosed with pots via the poor mans tilt test last April , consisted of me having a monitor strapped to my wrist and going from sitting to standing position myself. HR went from about 70bpm to 140bpm however no clear picture could be seen of what was happening with my BP with this tilt table test. It was enough to diagnose the POTS anyway. Im nearly a year on after my diagnosis and im still trying to piece together exactly what is going on in my body. I dont ever faint but have regular 'near syncope' episodes, mainly vomiting and dizziness. Im turning blue at times to try to get the consultant I have been dealing with to take any of this seriously....in fact today he brushed me off with the 'Medicine isnt an exact science, we dont know'! Lark. Needless to say im a little frustrated. And everytime I try to mention the vomiting etc and feeling of 'everything draining from my head' symptoms he says my BP is fine Pots is all about the HR. My BP is normal when im sitting, rises slight when I stand (HR jumps way up) but i suspect it only crashes about 10-15 mins after I stand and cos nobody seems to really understand this in the medical profession it seems impossible to get them to take me seriously when im trying to tell them this...i get that 'your over anxious' look! My last hospital admission my BP was fine when the were doing sitting and standing but the one day a nurse took it after I had an episode of wretching etc its was just 87/40...but ya think I could get them to pay any heed! I would appreciate some advice on this one....I am thinking of trying to book the proper tilt table test and get my GP to refer me for it. I just dont know will this be of any further benefit to me? Its costly and im a student so i want to be sure it is worth going for the proper one again before i put my hand in my pocket...AGAIN!

I have also experienced working nightshift's in hospital (im a midwife) and totally agree with above. I found night shifts quite good but only if its a consistant thing...the change over from nights back to days is a nightmare with POTS and totally messes with my body! I assume thou the night shift work is totally dependent on how severe an individuals symptoms are and exactly what kicks it all off too...i find if I end up doing alot of sitting-standing it takes a terrible toll on my body. It seems to be either one or the other for me....keeping moving on my feet or keep sitting for long periods. The fatigue kicks in when im doing too much sit-stand! I worry about the future of this for me thou and how long I would realistically be able to keep it up. A mental busy night on the labour ward is stressfull...added adrenaline surges when your rushing to emergency theatre on a fairly regular basis doesnt help a whole lot POTS wise!!! The last night i did a nightshift and this happened I checked my pulse and it was easily running at 180-190...i didnt notice it symptom wise cos i was so wrapped up in my work but im guessing it seriously added to my fatigue later. Cant be too good for the aul bod! I am only newly qualified and will havto experience more nightshift work to get an idea of exactly how feasible it is for me personally but if any of you who have done em have any tips on managing routines and pots while doing them i would appreciate your advice!!

This is defo a problem for me and in recent months, like others here, i have managed to track severity of my symptoms to different stages in my cycle. I was also on a BC device, progesterone only that I have discovered has been making things worse. I tend to feel great once i get my period, feel almost normal for about 10-14 days and then the downward spiral begins. This is the mid-cycle stage when Progesterone starts to build. From this point POTS seemed to get worse and worse for weeks until I got a period and the cycle started again. (last time i ended up in hosp the symptoms got so severe!) So for me the progesterone only BC seemed to be adding to severity of my symptoms as I didnt get a regular cycle and progesterone was building for alot longer! Progesterone seems to kick of my POTS. I recently stopped the BC and have noticed some difference in severity of POTS symptoms althou im still definately noticing a drastic change in my body at that mid cycle point. Think, as with most things related to pots, everything seems to effect people differently and its so hard to pinpoint exactly whats going on...for me this is what I have discovered is significantly adding to the debilitating times!

Delighted to see this discussion today I was actually gonna start one myself to see what pples opinions are. Slowly but surely im pulling the full picture together of my own POTS and symptom associations...and without a doubt it is directly linked with hormone changes for me! I cannot tolerate combined contraceptives at all and always believed this was the oestrogen. I started a progesterone only (Implanon) a year and half ago just after the onset of severe POTS symptoms so everything got kinda confused then. It took me a year from symptom onset to get diagnosed and I never associated a worsening of symptoms with this. However since diagnosis I have noticed a definate cycle with POTS symptoms a cyclical changes. I have not yet been able to identify at what point/what hormone changes is kicking it all off. I believe it is the build up in progesterone...I would go 10-12 weeks with no period(on implanon) and POTS symptoms would build in severity (to the point of hosp last time) once the cycle ended symptoms dissipated. I feel great for 2 weeks, no symptoms, and then the whole thing kicks off again ! I got the Implanon hormone bar removed just over 2 wks ago to see what happens wit my own cycle but here I am again 2 weeks into the cycle and POTS has kicked off again the last two days! As mentioned above by others, my labs also always come back okay, but i am hoping i will be retested now without the hormonal influence of the Implanon. I also regularly get the lower right sided back pain mid cycle that was mentioned by you guys...im wondering if I also have some ovarian cysts that are causing Pots problems too. A pituitary adenoma was found on an MRI a couple of months ago aswell but no heed is being passed on this either :/ . Ive started keeping a POTS symptom diary with cycle details aswel in the hope if i write it down that some doc will see the full picture rather that me trying to explain it!!! Its very frustrating to know your own body and be identifying these issues but dismissed at every avenue! There are so many different aspects to this its hard to find what applies to each individual case...i know im certainly struggling to suss it all out!!!

just to add to this convo!! I struggled with Anorexia for 8yrs...i suspect my POTS pre-existed this as i remember having POT's symptoms. They were dismissed as anxiety and psychosymatic and it was here the dry wretching, lack of appetite and total confusion lead to the ED. I was put on SSRI's at the time...i now suspect these did a good job at controlling the POTS as the symptoms i was complaining of reduced but the anorexia deepened. Fast forward 8yrs....fully recovered from the anorexia/bulimia....came off the SSRI's slowly and Bang...hit like a truck with POTS symptoms. I got my diagnosis of POTS just a year later after losing 2 stone, constant dry wretching, heart pounding etc and total insistance with medics that i was NOT anorexic again! Also to note I cannot ever tolerate combined contraceptives containing Oestrogen...i vomit like mad and am bound to the couch just 2-3 days after starting them. Also the times in my cycle when natural oestrogen is at its highest is my worst time for POTS (landed in hosp the last time it got so bad) Pituatry MRI showed Microadenoma still waiting on further hormone results etc. But putting all that together I suspect there is defo so correlation between serotonin, oestrogen and POTS for me just havent got a clue what that is!

Aw Ginger A...my heart goes out to you! I really do kno how you are feeling at the moment. Was diagnosed the same time as you and have done my best to keep everything going and keep positive. But Alas....im very fed up too now!! Starting my internship as a midwife in Jan, just trying to complete my last couple of weeks of theoretical work now. AND its worse im getting not any better . I dont kno how im going to manage it I just kno I havto stick to the mentality of one day at a time....who knows what may change for the better in next couple of weeks (or worse!) but i stick to the motto that I cannot tell what will come in the future and can only deal with what is happening today!! So GingerA yes it is horrific n horrible to keep dealing with this...but dont give up on the things you have worked so hard for. Take each day as it comes, dont make any huge decisions with regard to your future based on how POTs is ryt now....go with what YOU truly want to do and try not to let the illness rule your future. best of luck with whatever you decide and i hope things improve soon.

That must have been awful scary Sorry it happened to you today. I'm one of those that never passes out either and I dread to think of a day that may come when it does happen. POTS can take some nasty turns pretty quick. I really hope this does'nt continue for you and it was just something a little more out of control today than other days. Take care and stay strong and positive if you can....easy said I know.

So my week in hosp was kinda worthwhile afterall!! Increased Midodrine has made me feel alot better althou the headaches are constant and bad now too! Anyone found a way of managing these headaches without having to keep popping painkillers? I hate the thought of my kidneys trying to process all these meds as it is!! Discovered my blood sugars are running quite low i.e 2.6 less than an hour after biscuits and tea...varied between 2.6-3.9 in 24 hrs. Fasting glucose level was abnormal. >7mMol And MRI of pituitry showed 5mm microadenoma (tumor like growth, not dangerous but could be interfering with hormone/chemical levels). Awaiting antibody tests to come back...dont know what they are exactly but so far my hormone levels have been ok. Im wondering am i producing too much insulin due to this adenoma, also could the Implanon contaceptive bar i have in my arm be interfering with giving an accurate picture of actual hormone levels...im considering getting it out??? however have to wait 3months to go back to clinic to find out more :/ seems like ages away...its frustrating!!

Serbo what are your symptoms of Central diabetes insipidus, if ya dont mind sharing!??

Eh still in hospital and today they discovered my blood sugars are running quite low! Despite eating 3 jaffa cakes less than an hour before my blood sugar was taken....it was 2.6mMol!! 4.2 at the same time yday aswell. And i felt horrific! Could be linked with whatevers on the pituitary and causing alot of symptoms ive been puttind down to BP!?? Either way a little picture is forming...may go nowher thou!!!

Yes Macks mom it is good that they have sent the bloods off now, and im sure they will inform me if anything unusual comes bak too. It was just frustrating to see that it hadnt been reported and also that he was so quick to dismiss. But I have researched it since then and althou he was a little bit shady with the details, what he was explaining to me in a very roundabout fashion sounded like what u have just said above Microadenomas....he said it is abnormal for them to be there but does not think it is of concern as in most people they have no effects. However I prob wont be able to let it settle until I get all the blood results and waiting 3months for these is a bit ridiculous...ill try and pull the appointment forward when im discharged. Less worried than earlier anyway! Docs also talking about starting me on Flucortisone aswell now, need increased doses of Midodrine and they are causing severe headache so hopefully a mix of the two shud help get me on my feet again!! Thanks all

Hey guys Thanks for Posts.....well now i really do think that its dipping well after I stand up! Gettin them to do BPs at the right time and listen to me is another case entirely. Gettin frustrated now. There is some level of orthostatic intolerance going on...im sure of it!! Ill keep trying to get em to listen! Sometimes knowing too much is an injustice thou...cos they are looking at me now in that suggestive way that I am 'over anxious about my health'! grrrrrrrr!!! A young doctor that was sent to look at my telemetry reading, obviously looked at it very narrow mindedly, (prob not knowing anything about pots) and said oh her heart rate was 68 until we came into the room and now its 120...giving the consultant that knowing look i.e Its anxiety!!! But i Have defo bin tachy in the 36 hours since it went on, when i check my own pulse its tachy on standing so how that wasnt picked up on telemetry is beyond me (unless a very narrow minded doc chose only to look at the last 5mins of telemetry!!!) Sorry guys im ranting....very frustrated!!! Also pituitary abnormality was picked up on an MRI months ago but not reported until today.The endocrinologist said, yes its an abnormality but he's 'not concerned' will wait until all my bloods come bak and bring me bak to clinic in 3months....grrrr I hate all the waiting and dismissiveness!! I have a huge family history of neurological/autoimmune problems...i dont believe anything like that should be put down to 'a common abnormality!!!'

Hi all Im asking loads of questions these days trying to figure this craic out! An endocrinologist has just been around,(im in hospital) I saw him a year and half ago when i was chasing a diagnosis for my symptoms and he ordered a pituatry MRI. Which I only got about 3mths ago, well after diagnosis of POTS. Surprise Surprise the results and report were only sought now that im in hospital. He has gotten a verbal report from the radiographer today so is remaining tight lipped about all info until he gets full written report. He said the pituatry MRI showed an irregularity, an area of increased magnetic resonance...lesion??. Can be picked up accidently in pple sometimes who are aysmptommatic. However he is not concerned about this at all for me and thinks there is no cause for concern that this has shown up! They have taken all my hormone/thyroid bloods again which will take ages to come bak...so he said he will see me in 3 months in the clinic . Im just a bit annoyed tbh cos what CAN appear in some people and not affect them....may be something that is causing ME to feel rubbish . Its awful frustrating how the small things are dismissed as 'not concerning' and not added into the bigger picture to find out exactly whats goin on! Do any of my fellow potsies have any info on pituatry irregularities? Does it tie in with POTS or any conditions related to POTS?

Hi all. Quick question for all you wise Potsies Ive ended up in hospital this week, but they have been excellent I havto say and have sent 10 vials of blood off to test for various diff things! Also on telemetry at mo and IV saline. I would have been happier to have a 24 hr BP monitor started but consultant seemed happy enuf to rely on nurses to do sitting and standing BP regularly . I believe my biggest problem at mo is BP not the tachy. On the v few times this has been done....im surprised to see my bp is low whilst sitting/lying and is increasing (v slightly) on standing i.e 102/68 lying 110/74 immediately aftr standing. I know my BP defo dips but I think it must be several mins AFTER i stand up. Yday this happened, it resulted in me running to the loo (i dont faint..dizzy/vomit/dry wretch always) and my BP when i got bak to the bed was 82/55. They dont seem to be taking me too seriously about the BP thing and the records from jst lying-standing BP's dont show the episodes of Hypo. The nurses dont take my BP when these episodes occur. Hard to try nd get your voice heard sometimes!! Does anyone know does this generally happen with POTS. It doesnt really fit criteria for Orthostatic Hypotension does it? Seeing as the BP dips a good while after I stand up. Im confused! fed up trying to suss it all out too!!

Im around 65-80 resting, over 100 when standing and if I stand in the one position for any length of time this easily goes up to 130bpm.

Heya Lette Its Steph sorry to hear ur having a rough time too!! Thought i was on the up big time n not heading bak to feeling like this again!! Its rotten. I see your on a good bit of medication now aswell.....its tough to get the balance wit them. Im hoping to get mine reviewed again nd get a better mix for what i need. Actually since i posted this earlier my mum has managed to get it sorted that i can get admitted under my consultant in ros tomoro morning. Hopefully some IV fluids at least will help me get bak on my feet a bit n go from there. Hope ur consultant helps you get bak online again Lette. Just wish there was a specialist/expert over here in some of this...its tough to find pple who have even heard of it never mind kno how to help !!

Funny you mention that Katy cos in my desperation today to feel a bit better and get a bit of food into me I managed to make a pot of veggie soup and put in lotsa salt, boullion and extra stock! i dont usually use it but was trying to find anyway to get the extra salt into me! Ill remember that tip for the future thou. Thanks Cant imagine drinking the boullion would taste too good!

Defo agree with this...i am less symptomatic when i am moving around a good bit and not doing a lot of sitting-standing. Also standing in the one position brings on symptoms...I get extremely tachy. Lying/sitting for any length of time same thing happens Can be so hard to balance thou cos I must rest when im not working but increase in symptoms when im trying to relax makes it very difficult. Its a balancing act all the time with this stuff !!

Thanks Anaphylaxing!! Tbh I am quite sick now I usually am very positive and upbeat and do everything i can to manage this but its really bad ryt now!! Dont feel like i have any infection or anything going on....Migraines are severe now, my HR usually is 70-80 resting and can increase up to bout 130-140 then with standing depending on how I am or what im doing during the day. But never low 58bpm earlier....my body feels like it is struggling terribly at the mo. Ive checked BP several times today and its never more than bout 95/58,(took an extra dose of midodrine this afternoon aswell). HR is fluctuating throughout the day from brady to tachy :/. Havent managed to get off the couch all day, mustering up the energy to even get some food has been really tough, althou my appetite is pretty bad now too. Think im gonna havto hit the ER later or in the morning Extremely fed up now!!! Thanks for the support u guys!! Im all on my lonesome up here where i go to college...no family around and as its the weekend all my college mates are gone home too. So its great to be able to get some support here xxxx

Thanks Katybug...hadnt considered doing this!! Cud really help with the long hours sitting!! ive only 6weeks left to complete the theory part of my degree...no more sitting in lectures after that!! So ANYTHING to get me thru the next 6 wks ill try!!! Thanks

Thanks so much for responses you guys Much appreciated! Em Ive been waiting to see my consultant for ages now...had to cancel my last appointment due to weather issues here in Ireland, cudnt make the journey. I think i defo need an assessment of meds at this stage and referral onto someone more specialist...whoever that may be over here :/ I was going to take another dose of Midodrine earlier for the low BP but when i discovered my HR was so low ( v unusual for me) I was nervous, usually the midodrine pushes my heart rate down. It cud end up making me feel alot worse??? I get the sense IV fluids is prob the only thing that will give me a lift now . Im drinking fluids but its running straight through me...think im hypovolaemic and bodies not holding onto the fluids i am drinking. However I dread the thought of having to go into A&E with this......havent hadto do it since diagnosis and no one knows ANYTHING about POTS here! Dont think id have the energy to explain and possibly fight them to take me seriously!!!!

This is my first bad flare since I got diagnosed last March Ive been working really hard since then at managing symptoms and found this alot easier to do whilst working on wards for the past 3 mths (student Midwife..lots of movement and physical exercise!). However I've just been back at college for two weeks now (lots of sitting for 2-3hrs at a time) and POTS has flared so bad. I feel horrendous now. The downhill slide started last monday and has gone from bad to worse. Since friday i cant move from couch to bed without severe wretching/vomiting ( i dont faint this happens with sudden hypo for me). Ive bad migrane headaches all the time, joint pains, twitching and the fatigue is so bad Ive been unable to do anything but move from my bed to the couch all weekend. BP hasnt been above 80-90/50-60 despite me drinking plenty of water with salt added. Lots of arrythmias but surprisingly today when i took my pulse (was considering taking an extra dose of Midodrine to bring up BP) my HR is only 56. I am absolutely frozen with the cold despite hot water bottles, blankets n extra layers too. Overall im feeling really miserable and not sure what to do as ive not experienced this so bad since i got diagnosed and was in hospital. Am wondering should i be trying to get some IV fluids at this stage to help with BP?? Also, despite being alot less active since i have been back in college the last two weeks, the weight is dropping off again ive lost at least half a stone in the last two weeks! Im thinking my body is working overtime trying to balance BP and HR with all the sitting-standing im doing?? I'd really appreciate it if anyone could give me some advice on what ye would do in this situation. It's so so rotten!!!

That is really interesting Sandyshelll!! i never considered that aspect of Autonomic dysfunction. I have had years of constant severe infections, chest, lungs throat etc etc but it has always puzzled me how i could be so ill so often, require so many antibiotics but never have a high temp!! Makes sum sense now...ive only been diagnosed in April with POTS buts Its like putting a puzzle together all the time since i got diagnosed. You pick up little things here and there and suddenly life long illness/symptoms that always went unanswered all fit in the POTS pot!! Shedding alot of light on how long this has gone undiagnosed!!

Hi CC Sorry to hear your story and diagnosis. It's an all too familiar one around here so you are amongst those that understand. I was only diagnosed last April and remember at the time I used up so much energy, emotional and psychological,that i didnt have worrying about what i was going to do in the future and would i have to give up my career which I worked so hard for. (Im almost a fully qualified midwife). Someone here said to me, not to worry take the time to get used to POTS and go from there. So I would say to you take each day as it comes CC, don't use precious energy and resources stressing about all the ifs/buts right now (easier said than done I know!). Focus on stablilising yourself at the moment and figuring out the things you need to do each day to manage all your symptoms of POTS. A couple of months on (after all the unnecessary stress and upset i put on myself!) I am back to work and have made up all the sick time I owed. Saying that it aint easy and I think one of the biggest obstacles to this Horrible illness is the fact that there is so little understanding and more often than not we suffer in silence. It's a daily frustration for sure, but i try to take each day as it comes, manage the symptoms that arise on that particular day and enjoy the job I have worked so hard to get. Having POTS shouldn't mean we havemto give up on the things we enjoy to do or have strove to achieve, but it does make it a challenge! I think it is very much about being wise about the decisions we make with regard to how we use our time and tuning into our bodies. Don't be afraid to say whatever you need to aid you in continuing your job. I was also extremely independant and hate drawing any attention to myself. I have learned to say it out when I need to sit/ a break etc because at the end of the day if I don't look out for myself no one else will!! Good luck CC with your journey in discovering how to manage this illness for yourself. Stay strong and positive and use the forum!! S-pot