lil_kt Posted August 2, 2007 Report Share Posted August 2, 2007 Hi everyone, hope your all ok. I'm new on here even though i've been reading these forums for a few months & found them really helpful. I've been ill since Dec 06 with very fast heartrate, black outs, dizziness & loads of other symptoms. i've been in & out of hospital at first they thought it was svt but i had more tests like 24hr heart monitor, treadmill test then tilt table test & yesterday i was told it was POTS. I had an idea it was as my symptoms were text book. I haven't been given any medication yet just high salt diet & lots of water. i'm waiting to see a specialist in london now & see what he says. Its been tough and i find it hard as i'm just 20 & i can't do the things i want to do & i can't go out with mates. I can't do much bcause i just end up in bed for days & blackout. i'm trying to get a wheelchair so i can get out more. Anyway i'm sure you will be seeing more of me on here. Quote Link to comment Share on other sites More sharing options...
Sandra Posted August 2, 2007 Report Share Posted August 2, 2007 HiI live in the UK too, in Hampshire. Reading your post was just like my own experience. I had been fainting on and off for ages, but it wasn't until Dec 05 that I ended up in hospital. I was in the Coronary Care Unit for a week as they thought I was having SVT's too. Although I was discharged on beta-blokers (propanalol)After a lot more 'episodes' and ambulance rides to A&E, the heart consultant sent me up to London. I am now under the care of Professor Mathias at The National Hospital for Neurology and Neurosurgery.Is that where they have sent you? It's part of the University College Hospital Group. I had my Autonomic tests (tilt-table, 24 hour blood pressure, Atropine test etc ) up there. Sandra Quote Link to comment Share on other sites More sharing options...
lil_kt Posted August 2, 2007 Author Report Share Posted August 2, 2007 I'm from the midlands. Prof Mathias is who i am going to see. Is he nice? did it take you long to see him? i hate all this waiting around, i'm always waiting for tests then results. i don't really know what to expect, i've already had a tilt test at my local hospital. i couldn't have beta-blockers cause of asthma. Quote Link to comment Share on other sites More sharing options...
corina Posted August 4, 2007 Report Share Posted August 4, 2007 hi lil miss!welcome to our dysautonomia world! although it's always okay to just read, it is much more fun to participate. there are so many friendly and helpful people around here. and what i like so very much is that we are from all over the world!!!feel free to ask all your questions, or, if you like to, participate in the chit-chat part to just chit-chat with the others.i hope your appointment with prof mathias will be helpful!take care,corina Quote Link to comment Share on other sites More sharing options...
Rachel Posted August 5, 2007 Report Share Posted August 5, 2007 Hello and welcome! I'm sorry you have reason to be here, but since you do I'm glad you found us. I hope you find this place friendly and helpful.Rachel Quote Link to comment Share on other sites More sharing options...
Sandra Posted August 5, 2007 Report Share Posted August 5, 2007 HiProf Mathias is lovely. He is very patient, and he actually listens to you. He will put you at your ease immeadiatly.When I had the appointment letter, my appointment was 10 months later! I rang the hospital and asked if I could go on to a cancellation list. They rang me a week later and asked if I could go the next day, which I could, so I was very lucky.The hospital is very easy to find and only a 5 minute...ok 15 minute at my pace... walk from Russell Square Underground. It is clearly sign posted from Russell Square. It's right next door to Great Ormond Street.Good LuckSandra Quote Link to comment Share on other sites More sharing options...
lil_kt Posted August 6, 2007 Author Report Share Posted August 6, 2007 At least it will be easy to find, had horrible visions of wondering round London. Did you have to go for the 5 days of testing with him? just wondering because i read through some other uk users past posts & alot of them seem to say they had to go & stay for more tests?Thanx for your help Quote Link to comment Share on other sites More sharing options...
corina Posted August 7, 2007 Report Share Posted August 7, 2007 this is why i LOVE this forum so much: you did such a great job explaining, sandra!!! we fellow dysautonomia people are here to help eachother out!good luck on your appointment lil misscorina Quote Link to comment Share on other sites More sharing options...
helen.t Posted August 8, 2007 Report Share Posted August 8, 2007 Hi, Just want to say that I'm from Glasgow, Scotland and have been down to see Prof. Mathias twice so far and waiting for news of my 3rd visit. I go and stay for the 5 days for tests each time as I have to travel so far and I'm too sick to travel for a day appointment. The Prof. is really lovely and will do everything he can to help you. I thoroughly recommend him and his team. This forum has been of immense help to me also and has helped me to know that I'm not going insane after all! I can't take part very often because the computer makes me feel ill which is frustrating as I would like to give others more encouragement as I have a lot in common with most of you folks. I think I have every POTS symptom known to man among many others of Dysautonomia. I will be happy to give you any help to prepare for your London visit. Hope all goes well for you.LOL Helen Quote Link to comment Share on other sites More sharing options...
lil_kt Posted August 8, 2007 Author Report Share Posted August 8, 2007 hi everyone! thanks for your supportive comments you've helped put me at ease. i'll keep you all posted on what happens with my appointment Quote Link to comment Share on other sites More sharing options...
nichob73 Posted August 10, 2007 Report Share Posted August 10, 2007 Good Luck with appointment his team are nice. I am UK but diagnosed in Montreal. Big problem for me is the hypovolemia and it is one thing that does not get measured there and i'm having a few problems as I have meds but for BP and Tachycardia but white as asheet peeing non-stop. i hope i canturn it around though soon. I just hope i can get some help with this. Keep hoping is the way forward. Any males seen doctor at the hospital. TC Quote Link to comment Share on other sites More sharing options...
Tessa Posted August 10, 2007 Report Share Posted August 10, 2007 HiWelcome!I am sorry that you have to be here but glad that you found us and that you are going to have such a wonderful specialist helping you. It is very important to find someone who knows about POTS.I am sure that you will the best help.Yes, please, Keep us updated.Love,Tessa Quote Link to comment Share on other sites More sharing options...
Sandra Posted August 12, 2007 Report Share Posted August 12, 2007 Hi Lil MissSorry I didn't reply straight away, but I have been in hospital most of the week. On Sunday night/Monday morning, not long after I posted on this thread I had an 'episode'. It was about 4.30am, I fainted but couldn't come round. I was sort of coming round and fainting again, so my husband called the ambulance. I have been in the Coronary Care Unit of my local hospital for most of the week. I came out on Friday afternoon.My husband told the Cardiac Reg in A&E that when I passed out, I stopped breathing. This is probably why I felt so grotty, and couldn't come round properly, as I suspect that my heart stopped for a short while again. It has done this 3 times this year, twice in A&E and once on the Tilt-table in The National Hospital when I was having my Autonomic tests.In answer to your question, no I didn't have a 5 day test, but have had 3 seperate days of testing.One lasted about 4 hours (when I was Asystole - the name they called it when my heart stopped and restarted on its own) One was for an Atropine test, which also involved the tilt-table and the drug Atropine was give intraveniously so they could see whether it was my tachycardia or my low blood pressure causing me to faint.And the last one was for blood pressure testing, including a 24 hour blood pressure monitor.I am very breathless at the moment, so I am going up to UCLH on Thursday for lung function tests. Although I personally think my lungs are fine, it's just my condition that is causing it.On 12th Sept I am having a Reveal Device fitted, which will stay in me for 2 to 4 months, so they can see how my heart rate is, and also to see if, and what Pacemaker to have if they feel I need one.I have been taken off Fludrocortisone, so am feeling a bit dizzy at the moment. I am sleeping most of the day too. I was taken off Fludrocortisone because my usually low blood pressure had decided to hit the roof!Prof Mathias referred me to his collegue Dr Holdright at The Heart Hospital, which is still part of the UCLH group of hospitals. My local hospital phoned her for advice when I was in this week, I will have the Reveal Device fitted at The Heart Hosp.Please let us all know how your appointment goes.take careSandra Quote Link to comment Share on other sites More sharing options...
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