Jump to content


  • Posts

  • Joined

  • Last visited

Profile Information

  • Gender
    Not Telling

s-pot's Achievements


Newbie (1/14)



  1. 27...reckon symptoms started aged 16 though.
  2. Yup....I am in a flare at present and have experienced massive HR fluctuations in recent weeks. Hospital holter for 6 days showed regular HR of 40-45 whilst lying watching telly and as soon as I would move/sit up it would be bopping away at 130-140. I saw increases of 100 beats going from lying to walking out to the bathroom. It is starting to level out a bit better now the last few days 55-60 resting up to 110 standing. I have no idea what caused such a bad flare and the massive HR fluctuations. I am not on a beta blocker just fludro, docs said my HR was going too low in the evening times to commence a BB. So I have no answers to it either but definately something I have been experiencing!
  3. I do not consider myself to be an anxious person or suffer from anxiety. However in the past this is something that I was 'labelled' with and it was certainly a label I took on board and began to believe about myself I heard it so often! It was the classic medical fob off (age 16) that I, my parents and others bought. I suffered for this greatly over the years, believing that my symptoms were 'all in my head'. I have had most psychiatric medications thrown at me at different points and suffered the physical consequences of these medications throughout the years. Now a few more years down the line I KNOW my personality/charachter and general outlook is not one of someone who suffers from anxiety. I am around family members fairly often who suffer anxiety disorders...it is not something I can completely identify with. However I would definately say any anxiety I do suffer from arises directly from the worry/distress in dealing with this long term chronic illness. The constancy of not being believed/listened to, the regular illness and feeling really rotten alot of the time, having the things I KNOW could be affecting me healthwise dismissed as 'incidental findings' and having my life regularly ground to a halt by it despite all the good/right things I try to do to help myself is hugely frustrating and certainly at times dips me into a mild depression. I think my anxiety levels tend to start to rise when I start to feel my body take the steady slope downward.....its a fight between body and mind. My body starts failing and my mind fights to keep my head above water. My anxiety levels rise as I try to keep everything going and keep control until i have to give in to the weakness again and take to the couch. At present I am attempting to come back from a bad relapse. This time Instead of looking at it as 'having to be off sick' I have chosen to give myself the gift of time and 'taking myself off the hook' for a period of 3 months. Walking regularly, chilling out, nice music/books, taking a course in mindfullness, learning to play the guitar and what ever else comes up. I am chosing to not 'have to' work in my stressful job during this time....even if I become well enough to go back and am trusting I will get by financially somehow in that time!! I am hopeful that by giving myself this time to restore my physical, mental an emotional health, that has been driven down by POTS over the last couple of months, I will be in a much stronger position to maintain my health for longer instead of repeating the same cycles. SO god love any doctor who attempts to tell me my symptoms are anxiety related ....Ill be filling them in on the above list! My new response to any doctor who fobs me off with the anxiety label is to tell them I will accept their diagnoses after they hook me up to a holter and then come back to me with medical papers/definitions for Postural Anxiety Disorder....cause looking at my holters I am a perfectly calm, serene and stress free individual as long as im sitting down
  4. So!! I had a work up of Pituitary function two weeks ago by a new Endo in the hospital. I Had a Pituitary Microadenoma diagnosed on MRI 18mths ago 4mm size, increased to 5-6 mm in recent MRI which has always been diagnosed as an "Incidentaloma" Results were in today: Insulin Growth Factor 1 Elevated 330 (Range 77-271) Prolactin Borderline raised 552 ( Range 102-496) (Could be stress I was in pots relapse) Oestrogen Low (Dont have exact result was just told was low, it has always come back low) Total Testosterone Borderline elevated 2.5 (range 0-2) Cortisol 08:30 656? Normal? Short Synacten Normal 676 pre 08:00 750 @ 30 mins post synacten Dexa cortisone Suppression 621 pre 08:00 Normal <30 post My headaches have really worsened over the last 6-8mths, I have developed visual disturbance also. POTS Is unstable and My menstrual cycle is irregular and problematic! I REALLy believe this pituitary growth is causing some of my problems and am SO fed up of having nobody in the medical field look at the whole picture,....my symptoms, dysautonomia, the pit growth and now the blood work and join the dots! I do not have any signs of acromegely (i read this can be caused by high IGF 1 & pituitary tumour) I am female mid twenties only 5ft tall and petite....so definately a million miles away from what signs they would be looking for with these results! The new endo is very good but knows nothing about Dysautonomia, I have yet again been sent away with another 'we will wait and see' scenario. Another MRI in 6mths, repeat IGF1 in 6months and other bloods and a referral to Neurology for the headaches. My frustration is it never seems to matter what comes back abnormal I always get fobbed off with the wait and see! Im wondering what are we waiting for to acknowledge that it mite not be an 'incidentaloma'!? More obviously elevated blood results? A much bigger increase in the growth? Till i get alot sicker and cannot function?? No one acknowledges my symptoms or that ANY of the above proven medical results could/might/maybe!! even causing some of what is going on . Pretty frustrated at the moment!! I am wondering does anyone know anything about IGF 1? The slightly elevated prolactin was thrown out as stress. No explanation for the reoccuring low oestrogen. The Free testosterone was normal so he said the Total testosterone was not indicitive of anything. Anyone any idea of what kind of doctor/specialist may be able to help join all these dots for me? At present I am linking in with a dysautonomia unit, endocrinologist, gynaecologist....and now a referral to a neurologist! But none of these seem to be able to piece the different bits together and I feel like im falling down inbetween them all and getting nowhere!
  5. I believe POTs meds may have lowered my resting HR over the last while too. Im on Fludro and have taken Mido in the past. A recent stint in hospital on Holter for 6 days showed my resting HR dipping down beween 43-50 in the evenings but if I got up off the chair to go to the loo it would fly back up to 90-100. Low HR is defo not to do with fitness levels or genetics with me I never had a resting HR this low, my usual was 60-70....just another new mystery of POTS it seems! Personally my own experience with Mido was it dropped my heart rate so when my HR is going that low now its been ruled out as a drug of choice. My postural tachycardia has been severe enough recently and causing a bad flare but cannot take a Beta cos the HR is dropping so low later in the day so that option is out. Tried to up the Fludro and I retained water a developed serious headaches so had to drop back again. So im out of options really at the moment. I do wonder what it is thou that is dropping the HR so low.....makes me feel like muck (worse than usual) in the mornings. So im really as clueless as you are with this one Andybose!! Just thought id share a similar problem!!
  6. Thanks everyone for responses UpDaTe today...went to the opthamologist and she cudnt see anything! Said the pressure was fine. I am wondering firstly how would one kno if intracranial pressure is high? And secondly the eye problems tend to peak at certain times during the day, possibly when the fludro peaks and also vision problems worsen when the pressure pain in my head worsens throughout the day. Im wondering as my aptment was very early this morning cud eye pressure be fine at one point n then and worsen later? I really dont believe it ia just begin floaters...i think the fludro is to blame n seems to be less efective recently and cauaing more problems..i have toyed with the idea of reducing n experimenting bit am terrified too of how bad cud pots get without meds now!! drs here in Ireland are pretty terrible when it comes to all things potsy!
  7. Freaked Where did you attend in Ireland? I have been at St James FBOU and found them quite good at first.... however i may have been overenthusiastic as I think now it was more of a "better than the worst ive encountered" scenario! I have had a very bad relapse the last 3 wks (had been getting gradually worse for a couple of months). The last couple of times when I attended i have found there is no recognition of POTS (as you said I was told it was good cos my heart is doing a GREAT job of compensating!)my fludro was just doubled "to keep my bp up". Which caused other problems cos it was too high for me and didnt control the tachycardia. There seems to be a huge emphasis on Low blood pressure and diagnosing NCS or Vasovagal syncope. They done a TTT(nitroglycerin) couple of months back (ive had 3) and my BP crashed post nitro...but that was the first time it ever had and I think it was the Nitro more than the condition that caused that....anyway it seemed to just reinforce their belief that its NCS despite the fact i never ever faint! Im utterly frustrated at trying to explain POTS to docs here who then insist on looking at BP constantly especially in a specialised Autonomic centre! For me its the Tachy that is constant and causes most of my symptoms. I ended up in local hospital for a week last week and the docs were shocked at what the HR monitor was doing....it seems they have to see it to believe it...HR 45-50 resting up to 160 when I went for a walk. Its the first hospital admission I have been taken fully seriously about how sick I get with it....it helped that one of the staff membrs who had worked on the ward had been diagnosed with POTS....i got understanding and sympathy for how ill I was this time!! I believe my bp drops when my HR tries to relax n HR pumps up again....if any of them actually stopped and thought about that they would recognise its like running a constant marathon! Anyway Freaked...im with ya here on the lack of understanding of the condition and the frustration of that really starts to get ya down! I am considering going drug free again myself as I am unsure how much the fludro is actually helping me now however my experiences with POTS would tell me there's a good possibility I will get very unwell again and could get more debilitated than I already am. Definately at a standstill !!
  8. I dont know AKgirl....im sscared to try comin off the fludro to see as im in the middle of a bad bad pots crash! However I really dont think the fludro is helping me much anymore nd upping the dose seems to be causing me more problems! Have an eye aptment with optomology doc next week mite be able to suss whata goin on!
  9. Im always fine the next morning after having a drink or two....its 2-3 days later the potsy effects really kick in for me! Definately a defferred reaction to alcohol here....your description sounds very familiar!
  10. I do suspext it cud be the fludro in my case tbh. My dose was doubked a cple f months ago and I really didnt tolerate it well. Defo had the vision problems before I increased dose but they got alot worse whem I doubled. Also I wud imagine (even if it is rare) that your chances of developing vision problems on fludro are much more increased if you are an asmathic taking regular corticosteroid inhalers too! Wonder how many people are really suffering eye problems due to fludro! Ive seen mention of it online several times...people with pots/addisons forums developing eye probs nd gettin no answers!
  11. Just wondering has anyone else experienced vision changes/problems on Fludro? I have had sudden change two months ago....ALOT of black spots, two central that move constantly when my eyes move also peripheral blur/lines. I know 'floaters' can be normal but this has not bin a gradual thing. I really don't think they are migraines either as I have never suffered from them before. I am getting intense pressure like headaches that have come on with these vision changes. I think they could be associated with the Florinef....I am a year on it now and I have started to notice a good few physical changes recently that I can only put down to the fludro. AND have just read this evening that long term corticosteriod use/fludro can cause vision changes/cateracts/glaucoma. Anyone else have any experience of this??
  12. I may have stumbled on something that may help me meds wise with POTS. Wud appreciate some knowledge from those who understand more than I do on this one!! I had a serious florinef headache that nothing wud touch and the docs gave me zydol this morning (im in hospital with a flare) It killed the headache but also I felt GREAT after taking it. I cant describe exactly but just felt like my body running right! Briefly looked it up inly to find tramadol/zydol mimics the action of SNRI drugs. Now I tried lexapro in the past for treatment and it had no effect...bt I gather this is a SSRI? So my ques for you wise folk is If a norephidrine uptake drug helps what does this mean with regard to my POTS i.e why would an SNRI be more effective than a SSRI? From what I read SSRIs have been found to be more effective which is why I tried thta route last time. Im thinkin of askin the doc to reduce my florinef back to 0.1 in the morning and possibly start an SNRI n see what it does?? (double dose has done nothing only increase headaches) Any ezperiences on this would be great folks!
  13. Thanka guys for your responses. I think it has certainly helped level out the morning chaos by splitting doses to morning and night. However im in serious pain tonight witha headache that feels like my skull is gna burst open and yes....i cant sleep!! You solve one problem and it creates another! Also here in agony sitting out on a chair and my HR is bopping away at 42bpm....i think the increase from 0.1 to 0.2 a cple of weks ago is too much! Is it possible that an increase in florinef could cause bradycardia? Im short of breath with it too. :/
  14. Corina They use a drug called fentanyl and bupivicaine in spinal epidurals. Fentanyl is a strong opoid and all opiods have an effect on supressing the nervous system. One of the biggest effects immediately post epidural is a hypotensive episode and bradycardia...i have seen this many times in people without dysautonomia....i cant imagine what the efdect would be on us with dysautonomia already. General anaes usues much stronger cocktail of opiod drugs to anaesthetise that most certainly wud effect the nervous system much more. I am a midwife and I always wonder why in literature they recommend epidural for those with pots for this reason. I wud imagine that a drug free labour if at all possible wud be best. Althou the pushing/valsalva manoeveur at the end im sure wud cause us potsies problems too!
  15. Surely a resting Hr of 46 bpm whilst sitting up in a chair at 11am in the morning cant be right!? Went for a little walk cos im feeling stronger HR went up to 147bpm n got bad left sided chest pain (this is new) . The HR fluctuations are massive! Im more concerned by the low HR than the tachy....its so unusual for me! Ugh v frustrated!!
  • Create New...