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GN1978

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Everything posted by GN1978

  1. Yes. Throughout the test. The report says that at the times I was reporting being symptomatic (which was pretty much throughout the test - 40 minutes of ****!) there was no abnormal HR readings. Not sure if that's led to the negative TTT finding?
  2. Finally got my TTT results assessed. I have today received a report/letter from the cardiologist noting that during the TTT my base line HR was 112 bpm (this is higher than normal, maybe a bit anxious because of the imminent TTT) and that my HR increased to a maximum of 155 bpm. The letter concludes that "this is a negative TTT". Is it though? My understanding was that POTS was diagnosed by an increase from supine HR to standing HR of over 30 bpm, or when the standing HR exceeds 120 bpm? My tests appear to show that both of the above have occurred, but says the TTT was negative. This doesn't appear to correspond with the above diagnostic criteria? I'm relieved to (potentially) not have POTS, but confused at the same time as I'm still feeling rotten, still getting symptoms, and now feel like I'm back to square one as to what's causing these symptoms. Options? Seek a second opinion? Back to my GP (who'll probably just say stress or anxiety)? This also puts me in a predicament regarding work, as I've been off for a while, and they may think I'm trying to pull a fast one as I've now been diagnosed as non-POTS. Frustrating!
  3. Just called my cardio as still no word on diagnosis. His secretary confirmed that a letter has been sent to my GP at the start of the week, a copy forwarded to me, but that she couldn't give any info over the phone, other than the cardiologist said the results were "reassuring". Reassuring? Does this mean POTS and nothing else? Or no POTS and nothing wrong? If the latter, what was/is causing me to feel crappy then and my standing hr to increase to over 130 bpm? I'm confused now! Roll on tomorrow's post!
  4. I'm being treated by a cardiologist at the Royal called Dr. Albouaini. Treatment has took the form of being prescribed beta blockers, which had an initial positive effect, but I'm once again not feeling too great. However, I've had a few problems, and still awaiting a full diagnosis. Had TTT in September, had no response from this. Chased it up and, at the start of this week, they ingot me me that they appear to have misplaced my TTT results, so no diagnosis has been made. They didn't even know about this until I chased them up for my results, but they are now looking into it and I should, hopefully, have a full diagnosis by the start of next week. Less than ideal, but I'll be happy if it eventually gets diagnosed, and if I don't have to undergo another TTT, as it wasn't overly pleasant!
  5. I'm being treated by a cardiologist at the Royal called Dr. Albouaini. Treatment has took the form of being prescribed beta blockers, which had an initial positive effect, but I'm once again not feeling too great. However, I've had a few problems, and still awaiting a full diagnosis. Had TTT in September, had no response from this. Chased it up and, at the start of this week, they ingot me me that they appear to have misplaced my TTT results, so no diagnosis has been made. They didn't even know about this until I chased them up for my results, but they are now looking into it and I should, hopefully, have a full diagnosis by the start of next week. Less than ideal, but I'll be happy if it eventually gets diagnosed, and if I don't have to undergo another TTT, as it wasn't overly pleasant!
  6. Given that POTS is a little known condition, even amongst some medical professionals, this site is a wonderful resource to gather info, get informal (non-medical) advice, and sometimes just to vent your frustrations and share experiences with fellow POTSonians! Keep up the good work!
  7. Hello all, Suspected POTS "victim" here. TTT 2 weeks ago, waiting on confirmation of results. I'm taking Beta Blockers, Bisoprolol (UK name) and they have eased my heart rate, palpitations and (most of) my shortness of breath. I'm still suffering from some symptoms, mainly ocassional shakiness/jitters, chest pain and pressure and generally feeling rubbish, tired, whacked out. However, the main symptom I'm suffering from is joint pain and achy limbs. Does anybody else suffer from this? I've been to my GP and he doesn't really understand POTS (if I even have it? - see TTT above). He's recommended compression socks, which have helped a bit, but I'm still getting pains, sometimes quite disabling, and extremely red hands. Apart from painkillers, does anybody know of any other meds which can alleviate these symptoms? I'm thinking of contacting my cardiologist to mention this as I don't think my doc fully understands POTS (I mentioned feeling nauseous and having stomach pains at times and he categorically said POTS won't cause this - wrong!). However, my next appointment with cardio isn't for another 6 months, so think I need something before then as the pain is holding me back/causing me to miss even more time from work. In that regard, work are now starting to tighten the noose now too. They've been fairly flexible up until now. But, having spoke to my boss today he's mentioned that my absence has now hit a certain trigger point and that I'll likely face a disciplinary upon my return, whereas other people are off for ages with stress, post natal problems, and have returned to work without any problem. Again, I feel that this is down to a total lack of knowledge of POTS and how debilitating it can be. In that regard, I think I definitely need to contact my cardio soon, to confirm if anybody has looked at my TTT, and if a final, rather than preliminary diagnosis of POTS has been made as I may need this info for any disciplinary, as I'll have their guts for garters if they try and sack me for having a recognised disability! Just a general rant! Sometimes it's good to offload on the internet!
  8. It's a weird pain. It feels like a burning, muscular type pain, but also get a lot of pressure on the chest with it too. Like having a small animal/child sitting on your chest. Just walked to my local corner shop (I'm in the UK) and my legs are sore from that. Heart rate stayed nice and low though, so looks like the beta blockers are kicking back in.
  9. I'm on 5mg of Bisoprolol, once a day. That's slowed the heart rate down to 55-60bpm resting (which is a bit slow, but he's not concerned) and 85 bpm standing. I feel a lot more confident and happier on my feet now the heart rate is down. However, I'm still getting chest pain and terribly sore and red hands and feet (blood pooling?), so may check if there's anything he can prescribe for that.
  10. I think the legs are sore for standing for that period of time, and because they got quite throbby, achy and stiff during the test itself. I haven't been diagnosed yet, as the nurses who were present for the test said they couldn't give me any information and that it was down to the cardiologist to look at the results first, and see what he thinks. However, when doing the test, they asked me to tell them when I was experiencing any symptoms and they would mark these on the test itself. They were in the process of doing that when I was resting after the test, and I got a little peak and noticed some quite high heart rate readings. Unmedicated, and after standing for about 5-10 mins, mine peaks at about 130bpm (compared to a resting heart rate of 65bpm). However, on the readings from the TTT I noticed a record high of 153bpm. So, I think a POTS diagnosis is likely to follow, and my cardiologist said prior to the TTT that he suspected POTS, based on my poor man's TTT results, and that he was doing an actual TTT to rule it in, to make a definite diagnosis, rather than to rule out POTS.
  11. Hello All, I'm a suspected POTS patient, had my TTT yesterday to get a final diagnosis. I came off my Beta Blockers on Friday, so approx 3 days without meds before the TTT. I didn't pass out during the test, but got quite symptomatic and found it a less than comfortable experience. It lasted 45 minutes and my symptoms kicked in relatively quickly, but really took hold after 5 minutes, and included: - feeling spaced out (rather than dizzy) - chest pain/pressure/discomfort - feeling short of breath - feeling very hot and clammy, but also cold sweats - numbness and tingling in the limbs - soreness in the limbs - even small bodily movements, like a small movement of the arm, made me feel very shaky and jittery in the area moved - shaky "jelly" legs. The crux of this message is the shaky "jelly" legs. I got these after 5 minutes and they lasted throughout the test. And, today, I literally feel like I've ran a marathon and been hit by a bus. My limbs are achey. My legs hurt from my calves, right up to my buttocks. My arms and shoulders are sore. I'm walking around like a 70 year old who is ravage by arthritis, but I'm only 34. It's just over 24 hours after my test. Has anybody else who's had a TTT felt like this 24 hours after the test? I'm guessing that it's just muscle fatigue/achy limbs due to experiencing the shaky legs for a prolonged period of time? The nurse warned me that I might feel symptomatic and tired for a few hours after the test, but it's now 24 hours and I'm in agony!
  12. I've been absent from work since March 2013, apart from a spell of 5 weeks when I was working reduced hours over a 3 day week, and then returned back on a full time basis for 2 weeks. This took me to mid June, and then I've been absent since. I'm due to return back to work on a week from this coming Monday. I imagine it'll be reduced hours again until I find my feet. Then, when I am ready to commit to longer hours, I'll be working a 4 day week, with Wednesdays off as a rest day. Looking forward to seeing friends again and getting back out there. But nervous too. We'll see how it goes, but I've already come to terms with the idea that health is more important than work, and if I have to quit/lose/change my job to be where I need to be healthwise, I'd do it without a second thought now, as I'm not paid enough not too!
  13. Cheers all, maybe advice was not the best choice of words, maybe shared experiences. I've got a quiet weekend lined up so I think I'll stick with the 2.5mg until I speak to the cardiologist.
  14. I first saw my cardiologist 3 days ago. I'm awaiting a TTT but from previous tests he suspects POTS and inappropriate sinus tachycardia. He has prescribed beta blockers - Bisoprolol (aka Zebeta, I'm in the UK). He's prescribed 7 days, then I am to get continued prescriptions from my GP. Anyway, he initially started me off on 2.5mg. I was due to up my dose to 5mg today, but am unsure about this. I've attempted to contact my cardiologist today, but to no avail, so it will now be Monday, after the weekend, until I can contact him. The 2.5mg have worked swimmingly. My standing HR is down from 125-130, to about 85 bpm. I unloaded some groceries from a home delivery and was standing/walking around for 10 mind and my HR reached a max of 94 bpm, less than it was on simply just standing up pre-medication. My concern is my resting HR. Lying down watching TV, or in bed, by HR has dropped to anywhere between 48-55 bpm. This seems quite low. But, apart from an initial bit of drowsiness, I'm not having any real, noticeable side effects from the beta blockers or this drop in HR. The concern I have is should I up to the 5mg, as advised, when the 2.5mg appear to be working, maybe even lowering my HR a bit too much? Or, stay in the 2.5mg (cutting a 5mg tablet in half), until I am able to speak to my cardiologist? Does it even look like 2.5mg may be too much, and 1.25mg may be a better starting point? Just after some advice, as I'm new to all this and hindered by my inability to contact my cardiologist today.
  15. I've got to come off the BB's two days before the TTT (ha, I'm getting used to the acronyms now). I'm taking Bisoprolol (the UK/English name). From experience, how quickly should these work? As I took one about 6/7 hours ago, and apart from a bit of drowsiness/lethargy, I feel quite good. Chest pain/pressure has subsided and my standing HR is down from around 120-125 average to about 95 already. Should they work fairly instantaneously?
  16. Well, that went well. The cardiologist was really nice, friendly and helpful. He reassured me that, while my symptoms are unpleasant, that I should try not to worry about them as my previous tests show that I have a perfectly healthy heart. He agreed that my symptoms all point to POTS and has referred me for a Tilt Table Test. I told him about my "poor man's tilt table test results" and he agreed that they pointed to POTS too. I've been prescribed beta blockers, 2.5 mg for 3 days, then upping to 5 mg. He thinks that my symptoms, while unpleasant, are not severe and that the medication prescribed should help alleviate a lot of the symptoms, particularly the chest pain, palpitations and breathlessness. So, bit more positive than I was, and we'll see how I get on with the meds, even though he's warned me that I may feel drowsy for the first couple of days, which I do now already, having taken a pill about 2 hours ago.
  17. Well, today is the day! Preliminary appointment with cardiologist. Not expecting any tests or miracles today, but will hopefully get some sort of ball rolling!
  18. Hello all, thank you very much for the information provided.
  19. Hello all, First time poster here. Just looking for an opinion from those who may be suffering the same symptoms as me. I've had issues for just over 4 years. All started with a bad case of norovirus. A week later, I start feeling quite jittery and shaky. Since that point, my health has gradually deteriorated, but with periods of remission/feeling better. My problems seemed to centre around standing up. Feeling rocky, weakness and shakiness in the calf muscles, a tightening in the throat, needing to swallow, but struggling to do so. Then came the chronic shoulder pain. A couple of episodes of almost passing out. I put this all down to ear issues as I had really bad sinus problems too. But, these were resolved but my other symptoms remained. So, I'd had enough. Went to my GP. Anxiety/stress was the call. I was wasn't buying this. Apart from a bit of health anxiety, I'm a laid back person. Then, things seemed to get better for a few months, still feeling not entirely great upon standing, but better. But, 5 months ago, a turn for the worse. I'd been feeling rocky in work. Then I was leaving for the day and almost passed out, felt like my legs were struggling to hold me. Very shaky. Back to the doctors. Her response - "stress, anxiety? No, I'm not buying that myself. You don't seem a stressed person". She then decided to take my BP and heart rate while sitting and standing. There was a drastic leap. She told me to come back a weak later, did the same tests with the same results and sent me straight to hospital, where a preliminary diagnosis of POTS was made based on my sitting and standing BP and heart rate. This was in March 2013. I've felt terrible since then, apart from a spell of 4-5 weeks when, although not 100%, I felt we'll enough to return to work. But I'm back off again. Feeling rubbish. Due to a few administrative muck ups, I'm yet to see a cardiologist/specialist. Have an appointment on 6 August 2013. But, I'm worried. I want to know what's up with me. I want treatment/to maybe feel better, but what if the other docs were right, what if it is anxiety/all in my head? What's the next step then? But, on the other hand I'm utterly convinced that I have POTS or some other form of orthostatic intolerance. I've had loads of test like 24 hour heart rate monitor/BP monitor (normal, a few spikes, but I was spending most of the time sitting as I felt really unwell at the time), ECG, 24 hour urine sample, kidney ultrasound - all clear. Why I'm convinced I have POTS is because of the following symptoms: - heart rate increases from 65-70 average resting, to 115-120 just on standing - increases to around 140-145 after just 2-3 minutes of slow walking - chest pain/pressure - breathlessness, I get out of breath even reading aloud, or singing. I never used to be like this. - feeling a bit confused/lost for words, or the right word, at times - waking up in my sleep, feeling like I'm choking/gasping for breath - chronic left shoulder pain/extending into neck and face (started at roughly same time as rocky spells, x-rays done, no tears, abnormalities etc) - numbness in the hands and feet, particularly on the outside (e.g. near the little finger/toe side) - random, involuntary muscle jerks - swollen feeling in the hands and feet, hands become noticeably red/mottled looking, as does the wrist/lower arm area I know there's SOMETHING wrong with me, but I'm starting to doubt myself now? I'm used to being told its all in my head, that I'm anxious? The doc even wanted to put me on anti-anxiety medication (Sertraline - gave it a bash, made me feel like death warmed up!)? What if the cardio is of the same opinion? Opinions? To you folk more experienced with POTS, do my symptoms sound familiar? I'm looking for some light at the end of the dark tunnel that's been the past 2-3 years when I see the cardio next week, but don't know what I'd do next if he didn't find anything wrong with me!
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