s-pot

Thanks alex...they dont know a whole lot but are willing to listen n trust that I know the illness better so thats always good. Freaked thanks for the post I really dont fully know what has caused such a crash except I went back to work as a midwife. Most definately run on adrenaline and it seems I only manage to work for 4-5wks till I crash. I was most definately concious....it seems my body cam tolerate very very low bps without me fainting. I took pics of the bp measurements to prove to the docs 61/41 pulse 53 at one point and 92/36 pulse 60 at another. Holter monitor here at mo is showing hra of 58 at resting n going up to 125 at standing....they cant ever seem to catch the low bps thou. The night nurse looking after me her best friend has POTS and was a nurse (hadto give up the job... for me cos I think im gna havto do the same ) Cannot express how nice it is to have someone looking after me this eve who completely understands and empathises with the illness. A rarity in my experience!!

Hey folks thanks so much everyone for the care and advice! I gave up on tryin to keep managing it at home today n went to gp who sent me to the hospital where the usual frustrations occurred....nobody knows anything about pots or dysautonomia and even after you tell them what it os they proceed to take my bp whilst lying down for a half hour and say "oh but your bp os great there now" !!! Grrrrr! Anyway im being kept in for fluids and a holter monitor n we'll see how it goes. I have no faith in them finding out any Whys but hoping at least 1-2litres flyid will help me over the next 24hrs to get back on my feet! Thanks everyone!

Its bin awhile but that oh so familiar POTS Crash has hit hard and fast in the last 24hrs! Had an all time low bp (that I managed to catch) today of 61/35 during one of my usual presyncope vomiting episodes. BUT anyone any idea of why HR wud become very low instead of the usual tachy with pots. my HR this time is very low for me....ive always had a resting hr of about 70-75 going up to 140+ standing depending on how symptomatic I am. Hr is 45-52 resting and was 67 with that low bp. Im on florinef. 1mg ...no major change in anything recently. I feel HORReNDOUS n will be heading for hosp if this continues...bin vomiting and near syncope all day cant get off the couch. 24hr urine sodium last week was 143mmol and potassium 45....what is normal??

My daily Headaches got horrendously bad approx 3 months ago. I got to the point of crying with the pain some evenings and had to start talking regular painkillers...I only ever got relief when I lay down for 20 mins or so. Docs doubled my florinef to 0.2. I have not had one since...and after buying a new BP machine my BP on the double dose of Flor is in the 100/60s mark during the day and dropping down to 90/40-50 at times in the evening. I do wonder what kind of lows I was hitting when the headaches got so bad!! Defo Orthostatic headaches anyway I have never suffered from migranes. Good Poll btw!!

Dana I have had this same problem come on only in the last two months. It was never an issue before and like you I am struggling to get an answer! They are not typical 'floaters'. They are continuously there, worsen during the day, move with my vision i.e reading a page of a book has become difficult as these blind spots move across the page as i move my eyes. Certainly not the 'presyncope 'going to pass out' kinda black fuzz either. I have struggled with worsening headaches for quite some time which have become very severe in the last two months, (not migraines). I thought this may have had something to do with the visual problems. Im was on Florinef 0.1mg, docs felt maybe my worsening headaches were from low bp and doubled the Florinef to 0.2, Headaches have improved but the visual problems continue. Someone mentioned above Pituitary problems. I have a very small tumor non malignant/non functioning on the Pituitary (5-6mm) which i insisted on getting rescanned in the last few weeks. Thought it mite be part of the visual problem but apparently not...they say it is too small to be causing any problems!? I was not aware B12 could cause problems like this....mite get it checked. I suffer from sinus problems and if flared up recently.... i do wonder whether this could be linked at all! Anyway Dana.... I am as clueless as you are but by the sounds of what you are experiencing I think its similar to me. Id be interested to hear if you get anywhere with this! How long has this been going on for you?

HI Freaked! I totally understand your frustration! Im here in Ireland... went around alot of different avenues before I was finally diagnosed! Im attending Dr RA Kenny in Falls and BlackOut unit in St James....its the best and ONLY place to go here! She is absolutely lovely and very attentive. The team know their Autonomic stuff! I was diagnosed with POTS in A&E of my local hospital by a locum consultant who had seen it before, this was a long time before I attended St James. Getting the diagnosis was great but for the year after that I didnt get much support or info on treatment until I went to St James. One thing I will say is that they don't get hung up on the 'labels', i.e POTS is a syndrome, collection of symptoms. They do proper TTT and lots of other stuff and treat based on what they see. I was confused at first as to what my 'diagnosis' was. Really all the 'labels' are interchangeable.... POTS, Neurocardiogenic Syncope, Vasovagal Dysfunction ive heard them all ..... but really dont get hung up on the labels. Whatever the tests show they will treat....its all autonomic dysfunction! In relation to follow up....I attended privately at first. Had a full assessment, TTT and was started on Florinef (was on midodrine before and didnt suit). They brought me back 2mths later and as I had responded so well to the Flo they were happy to discharge back to GP, with lots of self help info! and to reattend if necessary. January all went downhill again nd i requested to be referred back up....had a public appointment within about 8 wks, another review and TTT done 2 weeks after that. I'm headed for a review again tomorrow (12wks since last). It is a very busy unit but I have found them to be quite good and tbh prob the best you will get in relation to this stuff here in Ireland. Most doctors have not heard of POTS and the ones that have, have very limited knowledge. If you have any questions feel free to ask I will try to help as best as I can! Bin on the rd with this here for a 3 yrs now....its a toughie!!

Same here...once I ovulate the two week run up to period is AWful! Exacerbation of all symptoms and by the time it comes to 2 days before I really struggle to keep going....always such a relief in symptoms when it comes! I get my good week or so just after my period. Strange how individualised the reaction to different hormone surges are amongst us! I cannot tolerate any BCP containing Oestrogen and two weeks ago started a progesterone only to curb the crazy rollercoaster of symptoms but I dont think its suiting me much. Migraine headaches and vision black spots have gotten really bad, feeling nauseous all the time and its getting harder and harder to pull my body out of the bed in the morning! Hormones are a conundrum!!

Anyone experienced a sudden weight gain on Florinef after several months on it? Im over a year on 0.1mg never had a problem until recent weeks, where I seem to have gained at least half a stone very quickly (two weeks with no lifestyle change)!! Some of it appears to be like retained fluid thou...ankles puffy in the evening. My hair wont take hair dye anymore either...I suspect something to do with florinef also? Florinef has been a dream since I went on it last year....im still symptommatic but can lead a fairly normal life on it as opposed to the complete debilitation of full blown POTS wen it hits. Tapered off it a few weeks ago for a repeat TTT and it was a disaster! However the weight gain is freaking me out big style now! I Battled a very severe eating disorder for 7-8yrs..... I think id rather suffer the symptoms of POT's without florinef than battle an ED relapse!! Id love ta hear if anyone has found this happen with Florinef or am I codding myself n ave bin eating just too many bars of chocolate recently

I also developed POT's in my last couple of years in college and to put it mildly the juggling was very stressful.! I had the issues wit friends not understanding and the frequent attempts at explaining my way out of nights out when alcholol would set my back for weeks and when I knew my resources were soo limited. However I also know that during this early time of my diagnosis...I put MYSELF under alot of pressure to perform like I wasnt dealing with a chronic debilitating illness every day. I expected the same out of myself as I would have years previously and made no allowances for what I was going through or as *outofadream stated,...the marathon my body was running everyday before i attempted study/work etc. However I Sometimes wonder if I relieved the psychological pressure off of myself and made some allowances I probably would have gotten the same result but without the constant feeling like I was battling my way through and only just surviving. i.e give oneself the permission not to have to *do* any of it...and then see how much of it gets done. I got the highest degree in my class...but was half dead by finishing time. I look back and see I worked hard and battled my illness every single day of the last two years. It was all consuming...but didnt prioritise any fun. I have since learned that the way of life is often to prioritise the things we see as 'important' things in life....school/work etc and see what one has left over for the rest. However it is these things that are energy consumers/stress drivers and it really is as important to strike a balance.....allocate some time and energy to the fun stuff/time with friends etc. I have learned that allocating time/energy with friends/doing stuff I enjoy is just as important as all the rest. Laughter and fun is energising too. When I lose the balance the stress of lots of work and no play is what makes me unwell. Suppose what im saying is that when I started to make allowances for the illness and let myself off the hook a bit, gave myself the permission not to keep forcing and pushing myself through it all, things got done anyway and I had resources for the fun stuff too. I dont know if this resonates or not but it was my experience of those college times and the fight between trying to keep things 'normal' and accepting the illness! Best of Luck! S

Hmmm unsure tbh.....whats your HR doing sitting/lying v moving around?

I havent posted on here in quite a while as I was doing sort of okay! My specialist started me on Florinef last May and it was a wonder drug for me. I responded so well to it that they thought It would be possible for me to reduce my dosage to .05mg in Nov and try to come off it by this May. (Apparently they dont like women of my age (27) being on it for more than 1-2 yrs?? It didnt go too well anyway! I tapered down to .05 over a couple of weeks in Nov and went from bad to worse...symptoms all came back with a vengance. It was horrible.....so up I went again to Floinef 0.1mg before Xmas and Bam...felt great! The end of January out of the blue the severe dizziness started. My POT's presyncope symptoms have always bin mainly nausea, vomiting/severe wretching, some lightheadedness, sudden extreme fatigue...that usually all resolve as I have my head hanging over the toilet! Never really syncope'd! Now the nausea/vomiting type symptoms have become less and I am v near fainting much more. Standing still on my feet today I came very close to it 3 times.....it happens quickly....I feel like the blood is draining from my head...everything starts to get fuzzy ...black dots. Luckily ive had enough time to manage to sit pretty quickly and drop my head which resolves it. I had a tilt table test last week (my 3rd) that was HORRIBLE! Ive never fainted on it before...but did this time. BP crashed from 129/84 HR 69 to 70/52 HR160 within 8 mins. I seem to be much worse since the tilt table...has anyone else found this? Also can anyone tell me have they experienced such a drastic change in symptoms suddenly.. for the worse? I am so disillusioned at this point. This change in symptoms since January means I cannot continue with my work. I am a Midwife and love my job. Where previously I could manage my POTS symptoms and never fainted or felt like I was going to I cannot say now that I wont faint and the risk is too high in the job. The doctors I am dealing with keep telling me that this thing usually resolves over a couple of years and my body will learn how to keep blood volume up without the florinef....im not so enthusiastic!! Im over 3 years diagnosed and its showing absolutely no signs of improvement. I dont know nor have ever bin successful in trying to get the doctors to figure out what is the underlying problem causing POT's .... they dont seem to 'work' that way....its more of a treat the symptoms and hope for the best scenario it seems. I dont know a huge amount about Mast Cell activation syndrome but from what I have read I am suspicious that it may apply to me! Just dont know who would I go to about investigating? Or what type of tests are done to rule this in/out? Sorry folks about the big long ranty type post!! Just very fed up of POT's at the mo and in one of those 'hating chronic illness' phases that im sure lots of ye can identify with!! Its a struggle to always keep the sunny side out....esp when most people havent got any understanding about the illness at all!

Florinef 0.1g has been a miracle drug for me in managing POTS in the last 6 months Tachycardia has been well controlled with it but i have definately still experienced pre-syncope on and off although milder than my pre Florinef days. My specialist instructed me to bring my dose down to 0.05 at the end of Nov. Over the last 2+ weeks ive been slipping down the POT's hill quickly at the reduced dose with all symptoms worsening, extreme fatigue and much worse pre-syncope but still no extreme Tachy! However I must say today Ive started to feel the HR begin to ramp up a bit im guessing its starting to compensate now for Low BP with the reduced dose of Florinef. I dont understand it all fully yet! But defo a Potsy here with pre-syncope and no Tachy on Florinef!

Very interesting Anna! I have a hiatus hernia diagnosed 2004, Asthma for years but never knew there was a link....when my hiatus hernia was at its worst reflux and painwise so was my Asthma. Needed nebulizers 3 times a day at one stage and it was very debilitating (im only 26 now). Practically bed bound at the time. POTs was diagnosed nearly 2 years ago but my biggest Pre-syncope/POTS symptom is reflex dry wretching (no nausea...something happens with the vagus nerve I think, its definately a reflex!) My own theory on it is that when my Heart starts to get very Tachy ?somehow? the vagus nerve gets stimulated engaging my gag reflex which causes the wretching and slows down my HR. I dunno if that makes any sense physiologically! Thanks for that nugget of info.....never knew that about the Hiatus Hernia/Asthma/Vagus Nerve....I have all of this going on I just don't know how it all links up yet!!

I started Florinef 0.1mg over 3mths ago now and its bin Great! Just wondering thou Has Anyone thats bin on florinef experienced any of the following symptoms as side effects? Onset 3 months after starting them? I started going downhill 3weeks ago....not so much with my usual POT's symptoms. Alot of joint pains, fatigue and in the last week these sudden very severe headaches. Ive never suffered from Migraine but im thinking this is what they are like! (im used to having lots of headaches but these are different....very severe and debilitating) Cant tolerate light, hurts to look around, sharp severe pain in the top of my head, feeling nauseous. Very Very dizzy. BP is also low....88/60 yday. Also I have NEVER syncope'd from POT's and I passed out last week twice with no warning signs at all. Got the doc to check my bloods, Potassuims fine along with everything else. She thinks its a virus...Im not so sure I agree!

hmmm thinking back on the last couple of weeks now...... erratic diet, missed sleep, busy/stressful workload at work AND I was feeling so well with the Florinef I went out a couple of nights and had a few drinks over the last 2 months which i really had not done much of for the last 2 years. Seems any additional stressors on the body is enough to kick it all off! Its soooo hard to keep life so structured and organised all the time around POT's . I reckon my 'pattern' for relapse is I relapse...feel rubbish...make a great effort to keep routine, good diet, sleep etc etc, start to feel well again, let it slide a bit and BANG back to the start! Suppose I gotta work a lil harder at keeping this on a level...shift work DOES NOT help matters. Nothing is worth this feeling like ive bin Run Over by a Truck!!!

Just wondering if others have noticed any particular pattern/frequency to POT's flares? I have pretty much been having flares every 8-10weeks since my diagnosis well over a year ago now...was on midodrine for 12 months and had constant symptoms (and horrible side effects!) between these flares. Started Florinef about 10weeks ago which has been an absolute dream and you could pretty much say I have had very little to no symptoms. Had to pinch myself most days to believe I felt as good and energetic as I did. Now here I am 10 weeks on again and another flare up. I know it will pass again....it just feels pretty rotten seeing as I had realised what feeling normal was like again! Back to the dreaded dry wretching, dizziness, horrible fatigue etc etc for another few weeks! Just wondering what's triggering the regular flares....its like my body decides i'm getting too comfortable with the 'well feeling' and decides its time for feet up!!! Grrrrrrr!

thanks katybug...interesting! Its something that has certainly come up several time's in the last couple of weeks. My new specialist recommended my trying something called 'mindfullness' and to begin practicing yoga/relaxation etc. NOT for a second was she suggesting that my symptoms were psych/anxiety related but she explained that anyone with these conditions have a much more intense physiological reaction to stress (chemical reactions etc) and therefore suggested trying it. you have reminded me of this little nugget of information she gave!! thanks for your input...it seems to be working for you! ill defo give it a go.

thanks for your response Emma...the florinef seems to be really helping me in every other way. Delighted to read you had some improvement in this particular area with the florinef too. Maybe i have nothing to be worrying about so!! (that would be great!!) Hope you are well steph

just looking for a bit of advice from all you wise ones here on the forum! I Recently had more testing Tilt Table showed.....huge variability in BP/HR. HR was compensating all the time, as soon as the Tachy reduced my BP started to drop and away my heart would go again ! So defo POTS/Vasovagal Dysfunction. 24 Hr BP monitor...showed drops in BP as low as 81/39 24hr urine collection Sodium level..... 141. (not sure what this means?) Anyway I d/c midodrine and started on Florinef which seems to be improving my symptoms althou im thinking now im going to need a higher dose long term than the 0.05 twice a day im taking. However I am starting to work next week on the Labour ward (im a midwife) night shifts included. My last experience of working there (nearly two years ago) was that the Adrenaline surge/anticipation that comes alongside delivering babies sent my heart seriously tachy and i was soooo exhausted after one never mind the 3-4 deliveries I could be involved in during the night (not counting the odd emergency situation we mite have)! Im just wondering has anyone got any advice on trying to control these surges when adrenaline kicks in? A certain amount of it comes with the job anyway but it seems to have a very pronounced effect on me now! any advice much appreciated!! hope ye are all doing well

I have recently started florinef too and am wondering about anxiety issues. Defo didnt have them before but am feeling increasingly anxious/mood changes. Started high does of Vit D at the same time so not sure which is causing this and GI issues at the mo...gonna keep going with them and am hoping it will all settle.

I definately experience this too. When I turn/move in the bed during the night im woken by my heart racing. A recent 24 hour bp monitor showed my BP steadily dropping overnight to lowest 81/39 at about 5am. A tilt table test yesterday showed that although my bp does not drop majorly with postural change, there was huge variability between my heart rate and BP. It was explained that my heart is working very hard all of the time to stabilise my bp.....as soon as my heart started to slow down my BP would begin to drop and my heart would fly again to keep it up. I assume when im asleep at night and blood flow is reduced without any movement my heart is working extremely hard to pump blood around....seems its not quite as successful at it as during the day and i wake up like ive run a marathon!!!

UPDATE!!!! I love this drug...just wish I had gone on it a year ago!! Its bin about a week since I started it at 0.05 twice a day. Im making sure to drink at least 2litres of water and take as much salt as possible each day. NO headaches, definately feeling more energetic and the daily 'dips' and severe fatigue seems to be lifting. However I not sure I can put this drastic improvement all down to Florinef. I was at Endocrinoloy apt last week and found out I am severely lacking in Vit D also (explains the constant bone aches!) So ive also started on Vit D supplementation.....50,000iu one a week for 6 weeks and then daily doses. I am really hoping this all continues in this direction! Its bin such a nightmare to find meds that help me and I crash quickly without any meds! Fingers Crossed LMG did you start on Florinef?? hows it going for you?

I have not had my own children yet but I would like to add that as a Midwife I have witnessed that when it comes to pregnancy and childbirth most often it is in the hands of the universe as to what way it all goes. I have seen sick babies born to parents with no medical conditions or family history of genetic conditions and very healthy babies born to those who have lists of medical/genetic conditions. Until you become pregnant there is just no way of knowing how your body will react to this. I have seen women who are perfectly healthy entering pregnancy suffer endlessly with illness and women I thought would suffer terribly, blossom and enjoy every moment of it. All we can do is ensure we are doing all that we can and what IS within our control to be as healthy as possible before heading into pregnancy...this includes having a healthy mind and positive outlook!! Discuss planning a pregnancy with your caregivers. Form a plan for treatment for whatever conditions you have for during the pregnancy... this is another thing that can reduce risk. As I say I havent had my own yet. I would never be so ignorant to assume that just because I know all the ins & outs of pregnancy, childbirth etc that I will breeze through it. I, like you, have many questions still as i know Pots/Dysautonomia may complicate a pregnancy. However i do know that when my time comes all i can do is prepare my body well for it, ensure I have good Obs/gyn that knows their stuff and the rest is in the hands of the universe! One thing I am sure of.... i could never miss out on the opportunity in my life to birth children into this world because of 'what if's'. for all the negative 'What if's' that could happen I can think of a million positives...what if I birth a beautiful girl that can sing and dance and enjoy life. That brings a ray of sunshine and joy to everyday. Or a boy.....who climbs and messes and makes the world laugh. Go with what your heart tells you....the rest will follow in whatever way its meant to! Good luck!

also to add...i think i may aswell have been taking smarties as taking the lexapro! I added it in last year (and hated doing so! it took me nearly 5 yrs to get off ssri's fully before) saw no effect POTswise when i started bak on it. I stopped taking it nearly 6 weeks ago and had absolutely no withdrawl effects from it (v v unusual for me!!) specialist rekons ive burnt out the ssri route for this.....they were treating dysautonomia for me for nearly 10yrs unbeknownst to me!

thanks for all the tips charmedliz!! i never thought i mite havto gradually go up on it i was just gonna start taking the full dose straight away. like yourself thou i dont react too well to alot of meds so ill be mindful of that now you said it! Abbyw....i could never get up to a high enuf dosage for it to properly manage my tachy/pots symptoms. the migraines were extreme and pressure built in my head hugely after only 2-3 days of taking a small dose 3 times a day. ive bin trying to make it work for over a year now messing about wit dose levels and frequency just cant take anymore than 2.5mg twice a day witout getting side effects that were quite life limiting. I love the energy it gives me thou! ive had a constant fatigue and slow advancing burnout since i stopped taking it and lexapro! im hoping the florinef will give me a longer lasting effect without lots of side effects and maybe I could try adding the smaller doses of midodrine in to give me more effect daily in a couple of weeks. Seems midodrine for me was not good enuf as a medication to be solely relying on!!