Serbo

Hi, I took florinef today the 1st time. 0.25, about 5 minutes after taking I got a big head rush, looked flushed and had tachycardia. I laid down for about 10 minutes and it eased off. I was then left with the residual feeling of burning or itchiness on my inner thighs and a little bit on my arm. Not itchy enough that I had to actully itch it but I was aware of it. No head ache, or dizziness, BP normal at 114 over 70 standing 30 mins later, heart rate 80 standing. Feel Ok now about an hour after taking it. Wondering whether this is normal to some extent or whether this is a mini allergic reaction? Unsure as to whether to try again tomorrow. I am also on a steroid cream called daktacort for a rash on my foot, I have no problems with that although not sure wether to apply today my florinef reaction. Thanks

not sure what pene stands for, but i have EDS and POTS. I try and walk for 2 hours every night, and do a 30 minute walk @ lunch where possible. Often it's just pacing up and down my street at night for 2 hours listening to an audio book, boring but it helps. If i have a bad day I do walking circuits around my living room rather than going out. My Dr Recommends using a squash or stress ball and squeezing for 30 seconds and then releasing every so often to keep BP up when standing. I kind of do this anyway when walking, i take a 2 litre bottle of water with me and have got in to the habit of curling it which helps. I searched for squash ball on the forums and got no results, does anyone else squeeze a sports ball of some type when walking around to keep BP up?

Steven - Just a quick post for support. I'm a guy, also in a high stress job for a big Pharma company. when the rushes 1st hit me, i couldn't even look at my work PC (even when working from home) without big surges, maybe 3 or 4 in a row until i lied down. Could physically do no work. The stimulation of trying to engage with a PC caused my nervous system to go haywire. I didn't take any meds for this for this or POTS for some time as no body could work out what was going on. Over a week or so the rushes settled and i could get back to doing some work at home, horizontal with the laptop in my lap. i found that working later in the day, e.g after 8pm helped. Perhaps as body was in a tired state there was less to get stimulated about. I had to take a week off work initially just to get out of the stress feedback loop of work. It has now got better over time and getting back to reality.

Hi SJ, thanks for taking the time to write that post. You always share such good info and get me thinking! Thank you. Things are much better now than they were, got most stuff under control. Excessive Peeing/thirst (diagnosed as Diabetes insipidus, but prob's pots) - Controlled by DDAVP, also stops BP getting to low and fainting Stomach issues - Omeprazol seems to help a bit, but mainly following a Paleo diet (ttp://en.wikipedia.org/wiki/Paleolithic_diet) has helped tons. I seem to get dizzy after eating wheat so cut that and dairy. Anxiety/Adrenalin rushes - Controlled by Paleo diet and meditation. Wheat/gluten or even to much salt causes the rushes, so like you said all about trying to keep electrolytes in balance and avoid the foods which inflame the gut. Low Blood pressure - Starting florinef today. I didn't realise it but BP changes with every heart beat, and in POTS People there can be huge variations, so ever changing transient drops can cause the ringing/pressure in the ears, visual problems, it seems all sorts. The new component in my diagnosis is EDS Type 3, which was causing all my clicking joints. Nothing that can be done about that, but interesting to note the Drs see EDS 3 often in people who get POTS after ablation. Do you have any clicking joints, or hyper mobility? I was lucky enough to see Prof M. Privately. Wait was still around 2 months, but then the tests and follow up appointment came very quickly. I remember you mentioned you went planning on see him, but it might be worth putting your name down on the waiting list, and if your better nearer the time cancelling? Some things i learned from the tests/they can pick up on: They can check which things make your bp drop other than standing still - In my case having my arms above my head (didn't know this), they also test reactions to cold, stress, food and other things They give you a 24 hour bp and hr monitor - Found in my case although i was tachy as predicted on the tilt table test, i was ok @ home. This finding meant they didn't think it necessary to prescribe beta blockers which is a big plus for me. I'm looking forward to getting my stomach issues under control and getting back to normality. A proper diagnosis is such a relief as i'm sure you know. Need to build a proper routine and focus on trying to get 8 hours sleep a night and then i think i'll be in a good place! Regarding Arrhythmia's - It must be so difficult having the POTS and Palps to deal with and i really feel for you. I have ectopics and god knows what else, but no sustained AF/VT as before. Touch wood! How frequent is the AF now, is ablation an option? The 1st question i asked the Prof was if i needed another ablation would i still be a candidate. i thought it would be a no straight away, but intrestingly I may still be dependent on what an EP says. Not sure i could do it though knowing it may make things worse. can't remember if i asked you this before, but were you cardioverted during ablation? I'm probably clutching at straws and looking for patterns where they don't exist, but i wonder if the shock plays a role in onset of pots in those with a propensity towards autonomic instability. Regarding Anxiety - I have thought a lot about anxiety. In my case what i have realised is that the adrenalin rushes and panic i get are caused by over stimulation. can be as simple as being stressed with work and then listening to music @ the same time, and that stimulation might be enough to cause big rushes, or the sudden faint/jolt to head feeling. Even over hearing to much loud conversation on a train, loud TV, Music, trying to talk to more than 3 people at once. All stimulation which the body can't handle. i was never like this before, used to go clubbing most weekends to clubs with some of the loudest sound systems in the world and thousands of people, so i know i'm not an anxious person. i hope this will subside with time, or i'll build a tolerance. Will be gutted if i can never enjoy live music again My plan is to get the BP and gut stuff under control and i think the stimulation issues will settle. However my worry is that being is that constantly stimulated state is very bad for the heart and the body. So it's a balance between engaging with the world, risking stressing the body, and basically hiding away! i think that's where citalopram could come in. i was prescribed it but never took it. not sure if i can justify it knowing i'm not anxious, just that my brain can't handle stimulation. Does it really help with the adrenalin rushes (i know you get them from ectopics not pots) and has it allowed you to do stuff you could not before? That's great information about DR Pitts-Crick, had not heard of him, off to google him now! Speaking of google, although health anxiety is bad, If i hadn't turned to Dr Google i think i would still be years away from getting a POTS diagnosis.

Hi SJ Suspect we may have connected on the UK AF Yahoo board? I think you kindly shared lots of info with me in the past. I'm no longer following the AF yahoo group. How are you keeping? Ablation was under Prof Schilling's team @ Barts, POTS diagnosis from Prof Mathias @ St Marys, and EDS diagnosis from Professor Graeme, I await my Neurogastrologist appointment with Prof Aziz.

http://www.dynakids.org/Documents/NewOnsetPOTSpostAVNRT.pdf Full Grubb paper on pots after ablation

Hi, Just an update on me. Finally got a diagnosis and want to post this to get it all out, and hopefully it might be of use to anyone else considering an ablation..... 2010 - palpitations, identified as AF, treated with beta blocker Sotalol. Also diagnosed with GERD, and visited physio for back pain and clicking in my chest. 2011 - AF occurring during exercise, had to stop exercising Feb 2011 - Cardiac ablation, discovered I had AVRT (an extra pathway), degenerating in to AF. Post ablation fainting etc... April 2011 - diagnosed by Endo with central DI, prescribed with DDAVP which helps. October 2011 - through Dr Google identified that I may have pots. Just had testing. Diagnosed with EDS 3, and POTS, awaiting blood results for hydrandreginc status In summary, I knew I was a clicky one prior to ablation, but EDS was never flagged by physio. I was a body builder who could lift my weight twice over so not suprising! I have seen the top Dr in the Uk for POTS, and in his observation in the patients that he has seen with POTS after ablation all had pre existing EDS. Certainly something to be aware of if you have EDS, have arythmia's and are considering an ablation. The DRs can't say why the ablation causes POTS for certain, some of their ideas in the 2010 Grubb paper below. I had a cousin pass from sudden cardiac death, didn't really tolerate beta blockers, and could no longer exercise so the ablation had to be done and my POTS Dr would still consider me as a candidate for another one if required.

Interesting, i had hep A as a child. My GP emphasised isolated liver enzyme rises are normal in the sense that it's common. I managed to get athletes floor or similar, treating it with daktacort which is helping, and alo liver enzyme has gone back to normal. Possibly a co incidence, but an interesting observation.

I am not sure, but I'll ask my endo next time I see her. She didn't say to stop salt, I couldn't, but she did say that i wouldn't need as much. However this was pre pots diagnosis. Whilst my body got used to the DDAVP I dropped some salt and felt better. She may have said it because the DDAVP allows you to retain more salt as your not losing it through fluid loss, hence not needing ad much as pre DDavp.

Thanks Sandy, seeing a Neurogastroentologist next week so hope the tests he orders can shed some light on it

most people on here are on the DDAVP pills, i am on the spray. my endo thinks that for people with gastric problems, and in general spray is the better option. absorbility she thinks in more varied with the pills. Thankful - i had tachy, chest pain before DDAVP and still do, don't think it's made them any worse. Blood pressure is higher now, specifically it goes higher with stress, e.g 140/80 in the doctors office! However i had similar high Bps before it when trying to manage with salt.

I have been on it for a couple of months now, spray as opposed to tabs, 10mcg twice a day. Diagnosed with central diabetes insipidus and awaiting autonomic test outcome. For me, it's been generally good. I actually need it, once it wears off my body dumps all fluid. Lost 5% of body weight in 3 hours during dehydration test. It's really helped with bp. used to struggle standing up for 10 minutes to shave, now no problem. Managed 15/20 mins on tilt test until i felt dizzy, could not have done it with out it. The big bummer for me is the headaches. never got headaches until i started on it, now i get acute sharp headaches, often bought on with stress. The ability to do more stuff outweighs this though. the 1st 2 weeks i was on it were weird , slept more and felt tired more. I figured this was my body adjusting to normality. Previously would go to bed and get out 3 times to pee before i slept! i had almost a constant head ache for the 1st 2 weeks, spoke to my endo, she upped dosage and now i seem to be doing OK. Really have to watch the salt though. i was eating out a few week ago, and had major salty food, starter and main. DDAVP suddenly wore off, dump'd am lot of water and felt very unwell. Had my eyes shut at the table and was almost asleep, but i didn't realise! Left the restaurant had a couple of banana's and a lie down, some pre syncopal "rushes" the next day and then felt ok later. The fatigue the OP describes was how i felt when i salt over loaded and lost a lot of fluid i think. Maybe speak to your dr about adjusting your salt levels/increasing your K? My Endo reckons must less salt is needed when on it.

Hi gang, just to bump this old thread. I have had elevated isolated ALT for a few months now. Top of the range here in the UK for normal is 52. It sat around 62, for a while, then went up to 90, 113 and now sitting steadily @ 90. All other liver enzymes and bloods are fine. Liver ultrasound is normal. Had Hepatitis as a child so got gut bacteria blood test done and waiting for results. Doctors are puzzled as to what's causing it, but aren't worried.I am on a PPI drug called Omeprazol and there are cases where it has caused elevated but stable liver enzymes. Anyone else had this drug do something similar? Doctors will not take you off a Gastro drug for elevated liver enzymes until your 3 times over the range, as I'm not even once over yet I have to stay on it. If i miss even 1 dose of Omeprazol i feel terrible, anxious, sick etc, desperate to get off it. I hear long term users of it have the same issues when they try and stop it.

Thanks Corina, I'm definitely more of an owl than an earlybird! It's not always easy to push through until late at night though. Yes hopefully seeing Dr Mathias. I think if I could get some meds to help with my BP along with DDAVP I could get back to some level of normality.

Thanks Firewatcher. Will have a look at my most recent bloods when results are back. I don't have any shaking or cramps during exercise, just lower back pain sometimes but suspect this is from bad posture and deconditioning. I wondered about the importance of maintaining salt intake whilst on DDAVP. I had cut down on salt initially as my BP seemed to be a lot better after starting DDAVP. As for being more able to exercise at night, I wonder if it's something to do with circadian rythym, lower temperature, or in my case less people around when I go out walking so less stimulation.

Just wanted to post a brief update on my diagnosis.... Endo believes I have central DI. Pituitary was normal at MRI. Asked for a referral to an Autonomic specialist so should be seeing the main Dr here in the UK soon. It's me pushing the autonomic dysfunction diagnosis as none of the other specialists I have seen have been able to come up with anything else! I am fainting, suffer from reflux, have generally low BP which drops even more so when standing still and HR rises to compensate. Plus I have a whole host of neurological symptoms which sound POTSy. I am male and 26 though so perhaps non typical for POTs, but this did all kick off after a cardiac ablation which makes sense. Re - DDAVP, I am on a nasal spray device, 2 sprays BD 12 hours apart. It really helped initially with BP but now not so much. Every now and again I get all day headaches too. Have had blood and urine samples on the days where i have head aches but the Endo has been satisfied with the results. I'm aware head aches can be a side effect but would love to know why, e.g to much or to little water, sodium etc... Fire watcher - when you mention exercise induced hyponatremia what did this feel like or how did you know this was the case? I have my 2nd spray of DDAVP at 22.45 and then normally exercise straight after, usually walk for an hour and a half and maybe do some push up's. I'm wondering if this could be causing me any problems. I feel fine, good if anything during and after exercise although I'm wondering if it's this late night exercise and DDAVP just before which is causing my postural drop and BP to be worse the next day. Incidentally does anyone else prefer exercising later at night? I can do much more at night than during the day.

Thanks!

Thanks for the clarification, we shall see what the endo apointment has in store as it seems as you point out it's not DI.

Thanks for your reply and the the info fire watcher, much appreciated. It was amount and Osmoality which prompted dehydration test. During the 24 hour test I passed just under 8 litres, urine osmolality 118 (normal range 80-1200). plasma osmolality was also low at 292 (normal range 285-4295). I presume plasma Osmoality is taken from blood rather than urine. sodium was also high, 146 (normal range 135-145). Not sure wether this was taken from urine or blood. The endo feels is these 3 results which point to true DI. Presuming serum Osmoality is the same as plasma Osmoality? Interesting that they went ahead with our tests with such low levels! I believe I read your thread about your dehydration test. Couldn't find it recently when I searched but wanted to print to show to my endo. I shall do some more searching and update after my next endo appointment. Thanks!

Just bumping this as could deal with getting some advice from others going through similar... I am undiagnosed but suspected POTS following an ablation. have been seeing an endo recently and was referred for dehydration test folowing result of 24 hour urine. The dehydration test had to be terminated within 3 hours as had lost 5% of body weight. Don't think I concentrated even after ddavp as they were still picking up high sodium in collection. My BP and hr increased rather than decreased as I became more and more dehydrated. BP was up to 150 over 90 and HR almost up to 130 when they terminated. Ddavp gave me a headache, but suspect this was due to drinking to much water after they stopped the test but before the injection. Feeling very confused as my experience seems to be contrary to others on here who did eventually manage to concentrate or had low BP as they became more dehydrated. Seeing the endo for full results in a few weeks, but judging by his initial comments he will go down the DI route, next step may be MRI and Ddavp prescription. I'm worried though as he's not a believer in POTS so I'm reluctant to start this drug without pots considerations taken in to account. I have plenty of pre syncope, Brady, fluctuating high/lo BP but mostly low, and I don't know how this drug will affect this. Would appreciate any thoughts on if my test experience sounded typical of a POTs patient or possibly something else. Not really sure how to address all this with my endo. He takes lying/standing BP when I see him and there's no immediate drop, I tell him this is because I'm loaded on salt, but with no immediate drop he's dismissing pots. I feel the dehydration test has depleted all my salts, much more pre syncope over the last few days and generally feeling rubbish. Thanks for reading, appreciate the support.

Have you seen much improvement in your BP or other symptoms taking in that amount of salt? I'm also trying to find the right level.

Thanks for your response, I shall try the licorice. That's a great tip! And for those who actually faint. Have you noticed that your BP stoops exceptionally low when you do faint, or has anyone experienced fainting when there BP was "normal"? I ask because POTs in new onset for me, and although i haven't fainted, i'm come pretty close even when my BP is normal.

Thanks Ramakentesh. For those that experience sudden pre-syncope can I ask what meds have helped alleviate this feeling? Florinef, any SSRI's? In my case i'm not sure that salt alone is having enough effect. The high salt and fluid intake just seems to cause an even greater urine output.

Thanks. I did wonder if the diagnostic tests or tools were different for H Pots as opposed to normal POTS. Will ensure BP is closely monitored at my dehydration test.

This is the question you had, right? I pasted this below from one place I have bookmarked. Just not enough oxygen in the brain, we all know how that is. Syncope happens so your brain can get oxygen when you faint or lie down. When the level is not good enough, the brain tells us thank goodness! Then we sit or lie down. BP varies, doesn't have to be high or low. The brain is the most metabolically active organ in the body and requires a steady supply of oxygen and glucose to maintain healthy function. Although the brain represents only 1-2% of the body's mass, it utilizes 20% of the body's oxygen consumption and 15% of cardiac output. Our brains are thus highly dependent on adequate blood circulation to maintain our sense of health and well being. The thought process, regulation of body temperature, hormone release, and many autonomic systems can be impaired by loss of proper blood pressure control. Our survival is as dependent on adequate blood pressure regulation as on the fundamental process of breathing. Thanks Sally. I am still learning and researching this conditions so understanding the fundamentals of what's causing this fainting feeling is paramount for me.Appreciate the info.