Paul1234

I was wondering, are the following typically or generally found with pots? - top of head headache, sometimes getting worse with exercise - headache just above the back of the neck, and in that whole area out to the ears, sometimes getting better after exercise thanks

Thanks again Clearly my difference is a lot smaller than that but the 30 point boundary seems quite arbitrary really. If you have the symptoms and a crap life as a result then you need help whether you are above 30 or below. I feel that I've had pots (or whatever I really do have) all my life, but just that I'm having a bad episode right now. So I'm not overly concerned about it getting worse, I just think its a blip and now I've found some resources that help me understand whats going on I can start to address it. I think the advice about underlying issues is very good advice and very important. If your nervous system is going nuts its much better to try to find a reason for it than to just throw drugs at it. Well I like that idea anyway but I suspect in practice I'll just have to go with the flow

Well today was the most remarkable day ever. And I have no idea why. When I woke up I felt rubbish, close to throwing up vertigo, tested the difference at 10am, 35 points. Suddenly this evening I feel completely great.. went to test again, 16 points. Not felt this well for two months. This is weird !!!!

thanks for that. I'm seeing a doc next week so I just want to be ready if they challenge my home recorded numbers really. And of course its good to understand whats what with how other people vary from day to day and what associations typically exist, etc ! I've actually been ignoring the maximum value and taking the upper heart rate when its stabilised. I have a heart rate monitor for sports so I can see the numbers continuously. Today its stabilising at around 35 points again and I'm very dizzed and brain fried ! oh well. Feeling relieved though to have finally found out what I "probably" have ! :)

I'm still in the diagnosis phase so apols for asking more questions. - When you did a tilt table test, how did the heart rate difference compare to a lying down vs standing home test ? more, less or the same ? - Do you associate bad days with high heart rate difference days ? (it seems to be correlated for me) - How much variability do you get between different days ? My recent numbers each day are 34, 29, 25, 20, 20, 20, 22, 30, 21, 30, 25, 34. - What other diagnostic tests do they do apart from tilt test ? I would hate to go for a tilt test only to find I was on a good day

thanks again... ECG was done a couple of years ago, all ok. My short term roadmap for now is to understand more about POTS and self treat. If I can manage it and lead a normal life without medication thats better than with medication. I've asked for access to my medical notes so I can scan through for old bloods and any neurological popups and doctors interpretations of that. A few years ago they recommended amitriptyline without a diagnosis, so I can uncover what the thinking was behind that. And I might just spot other things in there, so worth a look. Medium term I'll get a diagnosis from a neurologist as I think there probably is underlying cause (mainly I think that because not all my symptoms line up with pots, pots has symptoms I don't get, and pots seems to particularly affect (not exclusively) people with small heart stroke volumes and thats unlikely to be me since I'm reasonably ok at endurance bike racing). So I kindof feel like I want to learn more about related conditions and gather some decent data before that meeting really.

BTW its great to hear about the gap and symptoms people have and how it all varies day to day and over different time periods. Its all helping to build a mental picture of the whole thing

Thanks Nicole, Symptoms are: undue tiredness, fatigue, random episodic muscle pain, dizziness, falling asleep, tinnitus, light headedness, episodes of poor concentration and highly variable performance in work and study, presyncope, all those ever since age 14, but also with intermittent periods of good performance in work and study. 6 years ago lots of vertigo and dx'd Menieres. Also more recently I had a strange brain attack and following that vertigo, strange headaches, occasional fever, scalp numbness, fuzzy back of head... (edit: also heart thumping - how could I forget the one thing thats always there!) Apart from that .. nothing

Thanks Sunshinegirl, My BP is about 120/70 lying down, when sitting its more like 130/75, when standing I seem to get two systolics, a weak pulse might come in about 130 and a stronger pulse around 100. My BP meter can pick up either of those so I try to record both as I feel it thumping during the test. Diastolic figure is 75 to 90 so thats an indication that I don't actually get lowered BP as you'd see in some POTS patients. Apparently thats quite common. Re salt I'm just trying to make sure I get enough. I don't want to be eating more than that. I did try an experiment some years ago (I didn;t know about pots it was just intuition really) where I tried high salt and I just felt rotten. I just did a half decent POTS test. It was quite funny really, put on my cycling HR monitor and started the garmin to record it. Went to bed read a book for 10 mins, and then thought hmm my HR is still quite high, so I relaxed a bit, ... and fell asleep !! s'posed to be working !! Then I woke up 45 mins later and stood up for 7 minutes. Sleeping HR was 61 min, 70 max, 65 average, (thats high for me, but I did do a bike ride at lunch time) Standing HR was 85 min, 107 max, average 99. Min difference = 24, max difference = 37, av difference = 34 I think I'll get a bigger gap between the numbers on a day when I didn't do a bike ride, so I'll repeat the test in a couple of days time

Thanks Katie :thumbup: 6 months before I can get some help is a depressing thought ! Still, they can't stop me helping myself in the meantime. I can see why tho.

I would like to tap into your knowledge and experience if I may. During BP tests last week I recorded the following standing HRs after sitting. I did this every couple hours over 3 days Sitting Standing 57 80 62 84 99 113 76 101 67 89 69 86 65 85 74 84 66 88 59 80 65 90 63 92 75 95 Mostly the standing figures are averages of two or three readings taken over 5 to 10 minutes. Obviously sitting does not equal lying down so the gaps listed would be bigger. My rest HR when I've been lying in bed for 30 mins is normally about 45-55 (to get a 45 I have to lie there like a jellyfish on the beach ) Sometimes its higher, up to 60.. So I'm wondering if people with this kind of gap, 25-40 points, at the lower end of the diagnosis borderline, would they be only mild sufferers ? or are there people with a 30 point difference who suffer badly from pots ? And how do doctors deal with it if someone has symptoms but their difference only measures up at 28 points or so ? Sorry mate, no pots, go home, we can't help you ??!! Finally I'd like to ask how long one has to have the 30 point gap before its considered chronic ? I am kind of hoping that despite having had POTS symptoms all my life there have been times when I've not had much problem at all, and therefore I should be able to get back to that with lifestyle adjustments. thanks Paul

I think its a chicken and egg problem, which came first ? I had tinnitus as a teenager and I had postural fainting as a teenager. That was a really long time ago ! I didn't have to look far on pubmed to find associations: ------------------- Autonomic nervous function in patients with Meniere's disease evaluated by power spectral analysis of heart rate variability. http://www.ncbi.nlm.nih.gov/pubmed/10530737 ---------------- Autonomic dysfunction on the affected side in Meniere's disease. http://www.ncbi.nlm.nih.gov/pubmed/6996422 I won't bother posting more but google away here: https://www.google.co.uk/search?q=menieres+autonomic That short 5 minute search is a wake up call for me, that autonomic issues could stem from menieres, or meniere's could have stemmed from autonomic issues.Even if the former is true, I'm glad I'm here because treating the autonomic issues is what I need, and not one doctor or ENT specialist mentioned to me that these issues might pop up. I'm sure they read a 1970's text book in college and then think that topic is finished and off down the pub they go !

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

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" 's The bit I dread is going back to the GP and saying "you really ought to read this" ... Right I need a lie down :---)

Sorry to wake up an old thread but I am investigating whether I have POTS and I already have a diagnosis of meniere's disease, for 6 years now. I've always felt that diagnosis could be incorrect due to inconsistencies with the way people describe menieres. Then today I found this which associates the two : http://informahealthcare.com/doi/abs/10.3109/00016489109128049 1991 lol !! Its such a shame that all this research goes on and noone ever remembers it.

Thanks 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 !!

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