Paul1234 Posted April 11, 2015 Report Share Posted April 11, 2015 Just wanted to say thanks for adding me and hello !I'm in the uk and interested in learning more.I have a very strong match with symptoms described on here and on the main sites for this disease (these diseases?), both lifelong, and more recently I've had some huge problems which I think are caused by pots or something related. I'm sure I don't have it so severe as some of you, that is, probably a milder form of what some of you describe, but I'm currently collating information and hoping to post some questions to help guide me along.I know better than to try to get a web diagnosis from a forum so thats not what this is about but I feel that connecting up and chatting about it will help me understand whats going on and also then help me communicate that with the docs and hopefully shorten the pathway to get from here to getting some proper help.thanks again !Paul Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted April 11, 2015 Report Share Posted April 11, 2015 Hi there Paul! I'm glad that you've found us here at DINET and decided to reach out and say hello!I had found the same thing when I first joined a few years ago, I couldn't believe that I could match my similarities with all these people I'd never met. I also felt the way you described, we have different levels of progression of our conditions, but wherever you may be in the scope of your illness certainly doesn't take anything away from what you may have to offer here!!! Uh, did that come out right? Brain Fog, sorry.Do you have a doctor lined up? I know you mentioned you were in the UK? Our DINET Physician list has some International Doc's on it who specialize in Dysautonomia, http://www.dinet.org/index.php/physician-list, let one of us know if you have any questions, the PM function is always a good option also.Again, welcome to DINET!Sarah Quote Link to comment Share on other sites More sharing options...
Paul1234 Posted April 11, 2015 Author Report Share Posted April 11, 2015 Hi there Paul! I'm glad that you've found us here at DINET and decided to reach out and say hello!I had found the same thing when I first joined a few years ago, I couldn't believe that I could match my similarities with all these people I'd never met. I also felt the way you described, we have different levels of progression of our conditions, but wherever you may be in the scope of your illness certainly doesn't take anything away from what you may have to offer here!!! Uh, did that out right? Brain Fog, sorry.Do you have a doctor lined up? I know you mentioned you were in the UK? Our DINET Physician list has some International Doc's on it who specialize in Dysautonomia, http://www.dinet.org/index.php/physician-list, let one of us know if you have any questions, the PM function is always a good option also.Again, welcome to DINET!SarahThanks Sarah,Re the doctors:I've taken it to a GP once where I presented a long long list of symptoms, both lifelong and recent, and I don't think he was able to process the complexity of what I presented. Here in teh UK the healthcare is free but they want to get you out of the door within 5 minutes so they can get their coffee on time! So that meeting was a bit of a disaster really and I think I had tourettes for the rest of that day !! Well actually that was my second meeting but the first time I went I just presented recent symptoms, it was only when I found "autonomic imbalances" on they internet after then, that it all started to click into place really, joining together history and recent.When I got past the symptoms which included lots of dizziness and vertigo he said he didn't think there was anything wrong with me. The fact that I had skull numbness, top of head headache, inability to work for 6 weeks, postural blackouts, general chronic fatigue, poor concentration, and heart thumping all the time, moan moan moan, none of those are apparently any indication that there's anything wrong here. He actually thought I was being neurotic !! Well I am now !! Despite the dizziness on standing my BP seems quite normal. About 120/70 in bed, about 130/80 sat in a chair, and about 100/85 standing up, with pulse about 30-40 points higher than sleep pulse when standing. Thing is though, I read that people can have POTS without a BP drop, so I think perhaps he didn't know that.I ride in cycle races although I've not been able to do so to my usual ability for 18 months or so, I have been able to continue training 4-5 days a week. He said he didn't think I'd be able to ride bikes at all if I had dysautonomia.Even though I mentioned dizziness and vertigo, at the end he said "hmm, no I don't think you have dysautonomia because if you had that you'd get a lot of dizziness". Arrrrgh !!!I was going to say (oops did say) "how on earth can someone do well in bike races but need to sit down after 10 minutes in the supermarket ?".. seems quite normal to me he said !Anyway, he might be right, or I might just be a "not too bad case" that doesn't need detailed management, or something else entirely.. I'm not going to dig myself a hole with self diagnosis, but the recent symptoms have left me unable to work for 6 weeks and thats a pretty grim situation to be in so I need to put some effort into working through this properly.Yours,Neurotic Paul PS it wasn't really my intention to dig this deep on my situation in this thread, I just wanted to say hello. I think I should do a lot more reading before kicking it around really.PPS Also I've decided to book up a private health assessment so that will give me a full checkup with bloods etc all done which should help rule out any other possible causes of autonomic imbalance. There goes a weeks pay already !! Quote Link to comment Share on other sites More sharing options...
corina Posted April 11, 2015 Report Share Posted April 11, 2015 Hi Paul, welcome to the forum! I hope you'll be able to see an experienced doctor to help you figure out what is wrong. POTS in itself is a rise on standing hr so I agree the doctor you saw may not have been familiar with it. Lots of other factors can come with it but a drop (or rise) in bp isn't per se needed to get diagnosed Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted April 11, 2015 Report Share Posted April 11, 2015 http://www.dysautonomiainternational.org/page.php?ID=30http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3361090/ - I recommend reading the definition and diagnosis sectionhttp://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=38932 I also recommend the links to left to the left of the left page.You don't sound neurotic to me at all Paul, just like you want to feel better. I'm sorry you've got a lot going on, but you seem to be in staying good spirits about it. I hope that you can find the plan that works the best for you.. doctors, meds, and exercise (which you have down, it sounds like!)Hang in there, it's really long road but there is light at the end of the tunnel! Quote Link to comment Share on other sites More sharing options...
Psalm 23 Posted April 11, 2015 Report Share Posted April 11, 2015 Hello Paul and welcome to the forum ! Quote Link to comment Share on other sites More sharing options...
Katybug Posted April 11, 2015 Report Share Posted April 11, 2015 Welcome, Paul! Quote Link to comment Share on other sites More sharing options...
Paul1234 Posted April 12, 2015 Author Report Share Posted April 12, 2015 Thanks Everyone for the welcomes and PMs When I was 15/16 I was a racing cyclist and I used to get blackouts when standing up then. I never saw a doctor about that, although there's been plenty of opportunities to diagnose this since which have been missed IMO.But one question I've always wondered is why did my academic performance increase hugely when I stopped sport (usually, outside of acute tiredness, athletes have a heightened mental function compared to being sedentary?). And its happened ever since, periods of good performance and times when I just can't concentrate, can't be productive in work. Now at age 49 I'm thinking how different things might have been with an early diagnosis. Even my online chess rating goes up and down by 300 points or more depending on whether I'm in a good period or not ! And the periods can be months or years - I just wish I could bottle up whatever I did to bring on a good period so I could replicate it !!I must confess to a huge sense of relief for finding out about "autonomic instability". If I'm understanding it right that could be caused by underlying factors such as illness, post viral complications or life stresses etc, whereas dysautonomia is more the same symptoms but where there's either no underlying cause or that there is one but its untreatable or indeterminable? Obviously I don't know which applies to me yet but the fact I had pots-like symptoms at such an early age stands out to me as a clue.Thanks also Sarah for the links. The ncbi one is an excellent guide and I'll work my way through all these. I worked through the symptoms list there and its a good fit, only a few are "no" 'sThe bit I dread is going back to the GP and saying "you really ought to read this" ...Right I need a lie down :---) Quote Link to comment Share on other sites More sharing options...
BeforeTheMorning Posted April 12, 2015 Report Share Posted April 12, 2015 Welcome to the forum Paul1234! Hope you can start getting things sorted out soon. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted April 12, 2015 Report Share Posted April 12, 2015 Hey Paul, glad that you found the links helpful. I can send more and there's plenty on DINET and the Forum. In the past, and I still do this because I AM neurotic, I bring new research with me and highlight what it's important TO ME that they hear. Might give you some backup!You are doing a good job handling all this, its overwhelming...and weve all been in your situation before! Take care!! Quote Link to comment Share on other sites More sharing options...
Paul1234 Posted April 12, 2015 Author Report Share Posted April 12, 2015 Hey Paul, glad that you found the links helpful. I can send more and there's plenty on DINET and the Forum. In the past, and I still do this because I AM neurotic, I bring new research with me and highlight what it's important TO ME that they hear. Might give you some backup!You are doing a good job handling all this, its overwhelming...and weve all been in your situation before! Take care!! Thanks again Sarah. Yes I've been through this process before with Meniere's disease (I posted a link I found on the meniere's thread in this forum), then.. as now.. the docs and even the ENT specialists were completely useless. And potentially, incorrect !Its interesting that the self treatment things (that I discovered by trial and error) that made me able to cope with meniere's wasn't anything like the recommended treatments, but was very much in line with the treatment of autonomic problems.Now I'm convinced its autonomic related, I'm far more relaxed and happy, less neurotic - I think because I know that there's no urgency and no quick fix (if any) for such problems, I can just study away now and hopefully find ways of getting better using the combined knowledge from peoples experiences of dealing with it in real life and also some understanding of the research and science behind it. I'm still a little stressed about taking it back to the GP, but I'm going to wait a month or two and see how it settles down with some of the more obvious do's and don'ts put in place.So like you I'm really interested in the research but also I'm really interested in the strategies and tricks etc that people use in real life to make it more manageable, that probably deserves a new thread, although I really want to scan whats on here already first Quote Link to comment Share on other sites More sharing options...
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