Janey

Hi Tammy, You definitely shouldn't feel alone - I think we all have major limitations, but they're just in different areas at different times. While I can walk around most of the time, I lose energy after about two minutes and need to lie down again. it doesn't mean I'm incapable of walking, but I would say that means I'm incapable of "going for a walk." We all have limits on different things; some days/weeks I can't even eat. And like Erika said in the post before - I go through periods where I can't walk, move, eat talk. Obviously if there was emergency and I needed to get up and use a phone I could, but at great and long lasting expense to my body. Janey

I'm so glad some people get it. I feel more "in control" of this whole illness if I feel I've got symptoms in common with people. Somehow it makes them more normal for me and I don't feel as sorry for myself as I would if I thought I was the only one! Thanks for replying. Janey

I can relate to you completely. I am mid-twenties, and up until a few months ago, had a growing and successful career in TV production. I've taken "time-out" from the industry to "feel better", but in the back of my mind I know that, that kind of lifestyle is not going to work with me being so ill. And I also have not reconciled the fact that I feel "I am what i do." At the moment I do nothing, so I am nothing. If I'd been 40 or 50 and got Dysautonomia and had to retire from the world after a glittering career, it would be kind of glamorously tragic - but this - mid twenties - I feel like I haven't even started, haven't even tried. I find it so sad and depressing. Also I never get to have that feeling of being independent; having my own car, my own house, my own life. My day to day life is so tied up with who will drive me where, who will make me dinner, which friends can be bothered to come round to my house. I have lost all my autonomy. People say you learn to live with it and do more as it goes on and I sure hope that's true. I don't mean to be depressing, just to let you know I'm in the same boat and I understand the feeling of not being able to realise your full potential. Some days I decide that I'd rather kill myself working and doing what I love rather than spending every day laying on the sofa in my front room wondering what could have been. Janey

I took it for about 3 months in 2007, but at quite a low dose, so I could have got it completely wrong and maybe it needed a higher dose. I took something like 10mg a day... try taking something like 30mg or 50mg. I don't think it does you any harm.. My Doctor wouldn't allow me to go on an SSRI (this was before the POTS/Dysautonomia diagnosis) because he didn't believe that I was ill. I went so many times to the Doctor and said "I'm ill all the time, I'm really depressed," and he just dismissed me. That's why I resorted to trying St John's Wort and 5HTP. After I finally got diagnosed I felt less depressed because I was more in control of what it was and I could read stuff on the internet and join groups like this. I do think though, that SSRI's would lessen my symptoms, as I have a lot o sympathetic nervous system involvement, and SSRIs reduce that. Will you let me know how you get on with 5HTP? I might try it again. I'm sorry you're so frustrated, we are all here for you Janey

Do you want the SSRI because of the frustration or do you want it because you've heard it helps with POTS? I tried to take 5HTP for depression when I first got symptoms and Doctors were ignoring me! I didn't feel that it made any difference, but I could have been taking it at too low a dose... Janey

Yes! I read that if you have tachycardia and you press your eyeballs with your hands, your heart slows down! janey

Just one other questions - can you have Addisons AND Ehlers Danlos? Obviously they'd both be the cause of POTS, but could they come together? Or is the likelihood of having two rare syndromes pretty impossible?! Janey

Thanks for your replies guys.. I've always felt I had an affinity with the symptoms of Addisons but doubted it when I got diagnosed with Ehlers Danlos (as EDS became the "cause" of everything) rather than anything else. Jeez, I am so fed up of feeling like this... nausea...pressure behind eyes...stomach ache... dizziness.. blegh.

Yet another symptom thread from me, but my body is going weird at the moment. Woke up, felt awful while lying there (eyes couldn't stand the light, head was already starting to thump, really wanted to go back to sleep) HAD to get up and started very slowly trying to get to my feet, got the usual crazy head, heart thumping, POTsy feelings then suddenly stomach cramps and soiled myself right there and then. I ran to the toilet and cleaned myself and felt like I really needed to lie down. I went back to bed and lay there for ten minutes, deep breathing, felt fine again. Decided to try to get up again, went through the entire process again, soiled myself AGAIN, but now have just stayed standing up. I feel terrible. Is this sympathetic nervous system/POTS? It is only upon standing up that this happens!

This whole thread has got me thinking about what really defines POTS... How long does the HR have to be crazy after you stand up from a lying position? I was Dx with POTS through a tilt table test and still often check it on a HR monitor when I'm not feeling great. Like I said before, my resting HR is 65bpm, then I stand up and there's a pause of about 5 seconds and then it has suddenly jumped to 150bpm, then over the next two minutes as I stand still it goes down very gradually to about 100bpm and then walking around varies between 100-120bpm. However, if I lie down in the evening, my resting HR becomes completely different, about 75-80 and when I stand up it jumps to about 120 but adjusts quite quickly. Is this still POTS? Even if it adjusts quite quickly? janey

Hi Firewatcher, you are so right! When energy is low, it has to be focused to be effective! I really needed to hear that as it's so relevant to my life too right now! Janey

If it were me and I could request certain services from the disability office they would be: - accommodation with proximity to the college so it's not exhausting for you to travel back and forth - the opportunity to "work at home," if you need to, on bad days - the possibility of retaking exams if you have a POTS flare up on the day of examination - Extensions of coursework that you'll be doing if you get behind due to illness - being able to leave lectures with understanding from your teachers if you take ill Janey

Yes, the general symptoms of dysautonomia cause me a lot more trouble than the actual core symptoms of POTS. If I *just* had POTS my life would be quite normal. There are some people who get very few POTS -type symptoms but still have POTS. In the morning I have a HR jump from 65 to 150 and I can feel it, but in the evening at the most I get a 15bpm jump and hardly any POTS symptoms. The reason I originally got diagnosed with POTS was because my gastrointestinal symptoms were *so* bad (so bad that I couldn't imagine just giving them an IBS diagnosis, which was what doctors were trying to slap on me) and it just turned out that I'd had POTS all my life and not really noticed! I've always been a tired, low energy, light-headed, dizzy person and just thought that was part of my constitution. Now I have started on salt tablets, I can't believe the difference, it's a life I haven't experienced before! Janey

Flop, you may be right. I've been under the impression that I've "never had a migraine" while having had lots of sicky, dizzy headaches and weepy eyes. Maybe I finally know what one is! Are migraines related to POTS? Janey

I'm having a BAD flare of symptoms today and have only had this twice before. I'm dizzy, my head keeps churning around, accompanied by lightning bolt headaches and woozy nausea every 2-3 minutes. And every time it happens my eyes get watery and I have to wipe them. What is this? High BP? Low BP? Just "POTS?" Janey

I can completely understand where you're coming from and I really feel for you. I struggled through a Masters with POTS before I started working and ended up vomiting in a lecture room, passing out in a corridor and taking loads and loads of time off. The Masters was practical so there's no way I could have worked at home or caught up in my spare time; you had to BE there at the right place at the right time. When I started my job it was even worse - I was working on a live television show so there were no get-out-clauses and it was the kind of work you couldn't put off or leave for another time. I don't know how I got through either of these things, but what really helped was: - Finding someone in authority who can understand your illness. Have them get to know you and what makes you worse/better. - Show that you work REALLY hard and you're not somebody who uses illness as an excuse to underachieve or be lazy. So go above and beyond the call of duty sometimes and they'll realize you're serious about what you're doing. If you do this, like I did, there is a chance you'll be able to reach an understanding with that person that you mentally WANT to achieve and you want to continue and that it's just the physical stuff holding you back. Saying that though, I've now been forced to stop work. I saw some friends last night and they said they were really worried about me while I was working because I looked "awful." Janey

I was told by Professor Grahame (who is the European Ehlers Danlos expert) that lots of people who have dysautonomia have anxious/phobic personalities from birth. So the nature of their chemical set up is that they are prone to anxieties and phobias. So as well as believing I have an anxiety disorder AND autonomic dysfunction, I also believe that it's part of my body chemistry to have one. And that bit of body chemistry also causes POTS. It's like another symptom in the great list of symptoms of autonomic dysfunction. I also know that I had very mild POTS from quite young. My parents always used to say I did this funny thing where I'd clench my fists and all the muscles in my face and body and shake. Apparently that is a way of raising blood pressure! Janey

I am completely with you on this one. 1. Because whenever I felt awful in the morning and was agonizing over whether I should get on the train to work, that's the reasoning my partner always used: If you feel sick, don't go to work. BUT IT'S So MUCH MORE COMPLICATED THAN THAT!! It's not like it was just a one off, it was an ongoing thing with different degrees of "awful" each day.. so I would think I might as well go in to work today because I could feel worse tomorrow and would rather take that day off than this one. 2. When I DID take days of from work (there were quite a few) all my colleagues used to say "Are you better? Are you better?" when I got back and they didn't have the patience to listen and understand that it wad an ONGOING thing where I'll have some days good, some days bad. So after two sets of days off they'd say "Oh, you get sick a lot don't you, better take some more vitamin C" and it made me want to strangle them!! And just shout "LISTEN TO ME, PEOPLE!!" Arghhh, it is making me mad just discussing it, even though I've now stopped working!!! Janey

I am not the best person to answer this AT ALL, but I always thought it was because it makes the blood more profuse and less sticky and in general just increases the blood's volume making it more likely to reach our organ's in its full capacity to give them oxygen and allow them to function normally.. When I am dehydrated, I can really feel the "clagginess" of my blood, like it's having a hard time getting to places and there isn't very much of it...

YES! And it also can't be too much!! Too much or too little sleep really messes up my autonomic nervous system In fact, sleep, hydration and diet are the three main factors in my autonomic system *just about* functioning. Janey

Oh and I forgot to add that coffee helps me in the morning, two cups, black. It really messes up my bladder and my hydration, but if I HAVE to go to work, it will get me out of bed.. Janey

When I get up... Crazy HR, 65 lying down, 150 standing. BP something like 90/50 ALWAYS dehydrated, no matter how much water I've drunk during the night Headache Brown urine Dizziness Mild nausea From about 1pm-4pm I'm fine with just the usual symptoms: sweating,mild nausea, brain-fog, tiredness. Then from 4pm onwards the major gastrointestinal problems kick in: Stomach pain, BAD nausea, dizziness, constipation, sore intestines, bloating.. Janey

Hi Guys, thanks so much for all your support and being so understanding. I didn't realise you would be, as I thought there were obvious, clear lines about what is manageable with dysautonomia, ie. as long as you can still actually complete the tasks you used to do, you can still "do" them and just have to accept it if they make you crash or they last five times longer. I think I'm trying to go about my daily business like I always used to and it's getting harder and harder and I haven't switched mindsets yet. I just feel like I'm constantly falling short. But nobody seems to understand this. My family, my friends - they think it's selfish of me to only be able to see them in my home and that they have to come to me all the time. There's an answer for individual things within the big issue, ie getting a local kid to do my grocery shopping or getting it delivered from online, but the bigger issue has to be dealt with. It's like I need to make an announcement to everyone. I went to a friend's housewarming the other day (we live in the same village and she's only a few houses down) but I got there and realised there was a removal van outside and the purpose of the gathering was actually to MOVE her into her house by getting lots of hands to carry stuff. I couldn't cope with the thought of not helping and I actually thought it was a nice group thing to do (for a healthy person) so I mucked in with everyone else, had a POTS crash, was out for a week. I must just be a people-pleaser! janey

Oh poor you, how horrible. I too have a pet (rabbit) who is the only thing that makes me want to get out of bed in the morning! I definitely think the new kitty is a really good idea. I find that my nurturing instincts override how awful I'm feeling a lot of the time and when you manage to give a home to something, feed it, make it well, it gives you a sense of achievement and love that you wouldn't otherwise have if you didn't have children. Janey

I USED to have this when I exercised at the gym.. the slow down in heart beat, going sheet white, feeling really, really, really nauseous.. not knowing what to do with myself. I STILL get this on the odd occasion when I wake up at 4,5 or 6am and have exactly the same symptoms. It's a shock because I've done nothing to trigger it except be asleep but it's just like something in my body or circulation has been released and I'm not going to be able to rest until it fades out. And yes, it does give way to panic attacks - do you think that's something to do with the adrenalin? Janey