Kooky

Hi Alison I don't really have answers for your questions unfortunately but wanted to say that your story sounds very similar to mine. I too had been to see the doctor on various occasions with complaints that alone probably seemed pretty trivial but there were just so many strange things going on at one time I knew something wasn't right. I had blood tests that all came back fine so I put it down to 'one of those things' until I saw one doctor that listened to my list of ailments and said what I was saying sounded like something he'd recently been to a seminar about. He did a poor mans tilt test on me, I was sent to a local hospital to see a cardiologist and from there was referred to Professor Mathias down in London to get further testing done. My official diagnosis of PoTS was given at the beginning of this year. Professor Mathias has retired from the NHS now but can still be seen as a private patient. I am now under the care of Dr Valeria Iodice through the NHS. I thought I would share her name with you in case you look into seeking out a specialist in the future. I also wanted to say that can totally relate to you being happy to have a diagnosis and knowing there is a reason for you feeling the way you do but also getting teary eyed and emotional because of the impact of it all on your future. Sending hugs your way. Finally, welcome to the forum from another Hertfordshire dweller Kooky.

I had an appointment at the Royal London Hospital for Integrated Medicine on Wednesday (8th Jan) during which I was given the results of the autonomic testing that was carried out back in August. It took a while between appointments because the doctor I'd been referred to (Professor Mathias) retired from the NHS so I'm now under the care of Dr Valeria Iodice who was very plesant indeed. Anyway After talking a lot about family history/symptoms and giving me a general check over we discussed the results of the tests and I was told I do have PoTS as well as Joint Hyper-Mobility Syndrome. It was explained that because water/salt loading, though helpful to a point, aren't enough alone the next avenue to go down is medication starting off with trying Midodrine as the beta blocker and ivabradine I'd tried before didn't suit me well. Before that can happen though she wants me to have a 24hour monitor to make sure it's going to be safe to use. It's a little fuzzy because it was a lot to take in at once, but that will be done under a 'day case' situation. There will be tests (not sure what or if they'll differ from the ones I had already) on the first day, then I'll get to rest over night and go back the following day for the monitor. I am also to be referred to see another person ( I can't remember the name she gave) about the Hyper-mobility and when a letter is sent to my GP she's going to suggest an ENT appointment because I mentioned how I have constant and often very loud tinnitus. I'm feeling at a bit of a loss after the appointment now. I mean, not much has changed really. Things are no different now than they were before I went except for we have an answer. On the one hand it is nice to finally know it wasn't all in my head, or just one of those things that can't be explained, but I'm also a bit bummed out too. I also don't know what to do between the appointment I had and getting the appointments from all the other things. Whether I should make an appointment with my GP to inform him about what happened and what she has planned of just continue bobbing along and do nothing for now. One other question - does Joint hyper-mobility syndrome differ from the hypermobile type of EDS?

Over the last 6 weeks I have lost over a stone and a half in weight and I was not very big to begin with. Nothing has changed in regard to how much I do (or don't do) or eating habits. The only thing that has changed is I'm finding that frequently after my larger evening meal I'm getting stomach cramps followed by an upset stomach that only lasts a couple of visits to the bathroom before it has gone again (sorry if that's tmi). I tried smaller meals through out the day but the same thing seems to happen after I eat something around dinner time. The above has happened before, lasting for a week or so then it has gone away for a long while, come back again then vanished. This time round however it seems to be an issue that is lingering on much longer. I went to my GP a couple of weeks ago now concerned about the weight loss and he ran a whole bunch of blood work all of which came back saying I'm in perfect health so he's a little baffled too. The next thing he's going to do is get a chest x-ray done to see if anything shows up with that. I was just wondering if anyone else has experienced this with their Dysautonomia issues, or whether this is something else entirely. Thanks for any insight you can give me. Kooky.

I had some blood tests done around a month ago and everything was fine then. It might be worth looking into again though. I've not been unwell recently but life has been a little more stressful than usual. I guess this could be partly put down to that. I've noticed I've been more symptomatic too and didn't really put two and two together until now. Your insight has been a great help. Thank you!

For the last week or so I've been sleeping no better or worse than usual but find I'm waking up in the mornings more tired than I was when I went to bed. As the days goes on the level of tiredness I'm feeling is increasing and it's really starting to make me grumpy, snappy and emotional which I absolutely hate. Just wondering if anyone else gets this and if there is anything you can do to help. I've tried resting/napping in the day and that helps for a short time but if I do anything in the least bit strenuous I'm back to square one again.

Hi Andy, Everyone is different, obviously, but for me tea doesn't have any adverse effects at all. I have one, maybe two cups a day and am perfectly fine. I can't tolerate coffee anything like as well though. Fresh ground coffee is a complete no go as it makes me tachy and feel absolutely awful. With instant coffee it seems to be a game of chance depending on how funky my body is being on the day. Sometimes I can have a cup and be fine and other times it has a similar (but not so severe) effect as fresh ground coffee so when I fancy coffee it depends on how brave I'm feeling as to whether I have one or not. I also can't tolerate energy drinks. I only tried one once and have been too scared to try again. I got the shakes, feel absolutely dreadful to that point of having that feeling of impending doom and my heart rate went through the roof. Unfortunately I think the only way to find out how it affects you is to try a cup and see.

Sometimes I get to a point where I feel as though I am asleep and awake at the same time. It's hard to explain but when this happens sounds seem to be off in the distance somewhere and everything seems to be moving slower than it usually would. During those times I find that I jump and can be easily startled by touch or noise above the background sounds around me. Like Becia I also tend to jolt awake a lot when I'm trying to get to sleep and also when I am actually sleeping.

When I was younger, like most people in their teens and early twenties, I'd go out and drink copious amounts of alcohol (particularly for my build) at the weekends with my friends/family and suffer no more than a mild headache the next day. One night after an evening out drinking with friends as I'd always done before everything was fine until the early hours of the morning. I woke up feeling scared, really really unwell and my heart was racing. I thought it was just one of those things, but nope. It continued to happen so I began drinking less and less and now just have one, maybe two once in a blue moon. I seem to be able to tolerate one or two drinks tops with no ill effect but more than that and I am asking for trouble. I also find that I have to stick with cider, lager or bitter. I've never liked wine so I've no idea the effect that has on me, but I do know spirits are a definite no go. An hour after drinking spirits I feel awful and my heart races. I really miss an occasional rum and coke but I'd rather miss it than put myself through a period of feeling like death warmed up.

As you mentioned your sensory overstim I'll add in that I do have issues with light sensitivity as a symptom and the Ivabradine does seem to make that worse. Sunny days (rare here in England!) and places that are well lit like shops and supermarkets look brighter than ever but not to the point of being unbearable. I've had a lot of success so far with lower heart rate. Without medication I'd have a resting heart rate of around 80-85 bpm and now I'm anywhere from 55-65bpm. I am not exactly sure how much my standing HR has changed numbers wise but I can definitely noticed a difference. I don't get palpitations nearly as often and can actually walk around at a slow, leisurely pace without being breathless which is amazing! That's not the case for stairs, they still tucker me out and I still get moments when I'm aware of my heart beating and being tachy but they are fewer and further between than they were before. All in all at the moment I think the side effects are worth putting up with for the good Ivabradine is doing me. Like you, I am hoping that as I get used to having the med in my system the whole visual disturbances and other bits n bobs will settle down. Please keep us updated on how you're get on. Kooky

Hi Heather, I've been taking Ivabradine for about three weeks now (2.5mg twice daily) and I can't say that I've noticed any change in my sleep pattern so far. I do seem to get a few more headaches than usual and at certain levels of light I get these really wacky visual disturbances that I'm not sure how to describe. If I move my arm (or anything), even slowly, it has this sort of motion blur effect though the outline left behind is bright white and very defined. I am glad to hear that you seem to be getting on well with it so far and hope that it isn't the medication causing your insomnia. Kooky.

The veins in my hands and lower arms bulge and look very blue when I'm n the shower and when I get hot. I find it is worse when my arms are down by my sides. I also get a sensation of building pressure and sometimes I'm able to feel my pulse 'beating' in my hands when this happens. I am not sure what causes it, but similar to Angelloz, if I lift my hands/arms up it all settles down again quickly.

Thank you for the words of wisdom everyone. After some discussion with my GP this morning it has been decided that, for now, as the Ivabradine is helping with heart rate I will continue to take it. If I find that the side effects are reaching a point where they are far outweighing the good it is doing we'll look at things again. Maybe if this situation arises - or maybe before - just in case it does - I can do some digging to see what helps others with similar problems. Someone on this thread mentioned florinef and midodrine that may help with the dizziness. That way I think I'll be better equipped to help him help me. As he is unsure of exactly what he can do to help he suggested that he writes a referral letter to one of the specialists in London where, hopefully, we'll end up with a few more answers as to what is going on. I'm happy with the outcome of today's appointment. Now it's just a case of playing the waiting game and learning what I can in the mean time. Thanks so much for your help and support so far.

Thank you for the responses so far it really is great to have the people that have "Been there done that" to ask questions to. A bit more information for you.. My GP - who was the one that suspected it may be PoTS arranged for an appointment at the local hospital to see a cardiologist. He wasn't really all that helpful unfortunately and dismissed a lot of what I had to say. He was a little surprised by the results of that test they do where your blood pressure / pulse rate is taken sitting and then at various points for ten minutes while standing. My resting pulse rate was 84 and shot up to 160 while standing up. I was shaking like a leaf and feeling terrible and apparently looking rather pale. The nurse that did the test looked really concerned and was saying how strange and unusual what happened was. It was the cardiologist that suggested trying these medications to see if they helped - which the Ivabradine seems to for heart rate at least. I forgot to mention earlier that the while taking Ivabradine everything looks a whole lot brighter. The sun hurts my eyes if I'm not wearing sunglasses. I was told if these medications didn't help the next step would be seeing a specialist. I kinda hope that happens whether it's helping or not as I'd really like a diagnosis that is a little more certain than possibly maybes. Even if it's not PoTS I think something is going on.

Hi Everyone, This is my first post here but I've been lurking for a while reading what you all have to say and a lot of it is extremely helpful. I'm so glad I found you! I am new to all this and en-route (hopefully) find out what is going on with me. At the moment I've been told I "Possibly have PoTS" Anyway, I am here to ask your personal experiences with medication and the side effects. How do you figure out whether the pro's outweigh the cons enough to continue taking them? Right now I'm in a bit of a pickle as to what to do. Obviously talking with my GP is a good step and I'm due to do that tomorrow morning but I'd really appreciate some thoughts from the voices of experience too. So far I've tried Bisoprolol which was an absolute no go. I don't think it made a great deal of difference and just completely wiped me out. I stopped that and have been trying something else Right now I am trying Ivabradine at a dosage of 2.5mg twice a day. There is no doubt what so ever that it is bringing my heart rate down when resting and standing which is a nice feeling. It's great being able to walk without feeling my heart pound in my chest like a jack hammer and without getting puffed out. However, taking it is also exacerbating the feelings of fatigue, light headedness /dizziness that follow me where ever I go on a regular basis. I find I am a bit more 'wobbly' and weak feeling when standing up too which is something I've only experienced once in while before taking it. I'm finding it hard to take information in. Like I can watch a TV show or have a conversation and hear what is said, but not actually remember what I saw/was said which is really annoying. I'm not sure if all this is linked to a fall in blood pressure that seems to have occured since I've been taking it. I've been taking it for about a week and a half so far. I wonder if taking it for longer so my body can adjust to the 'new settings' is a good idea?But as I said, I'll discuss this when I see the doctor tomorrow and see what he has to say. Thanks for reading!