stephsurf

Thanks so much for getting back to me - I think this norepinephrine is something to get tested even as some reassurance as to that's what's actually happening to me by no control of my own rather than me inflicting it on myself! I wouldn't be suprised anyway as I usually feel a bit wired most days for no particular reason. So I guess getting anxious on top of an already high level does nothing to help matters! Like tonight I find when I get stuck in one of these flares it literally lasts until I sleep it off and restart again the next day. I find I often need more than than 16 ounces to bring me back down to a normal level and I then have to be pretty strict with continuing drinking afterwards more so thn usual otherwise it keeps reoccurring again and again! That's what I mean if I can be reassured that this won't happen if I just really do drink drink and drink in the first place - more so than I do now then I think I'd feel much better but sometimes it's difficult to drink so much in so little time!

Hello, I know from the title you might instantly think well of course there is a pattern. However, some days when I am being a little bit forgetful I can get through a day feeling quite alright on maybe 1-2 drinks less than I would usually have. Bearing in mind I probably have about 3-4L per day generally. Other days I find that I can be drinking relatively well or should I say normally but get these 'flares' which seem to last between 4-6 hours generally (however, most of that time is the aftermath). I started to think they were panic attacks because they weren't necessarily related to what I was doing, the energy I was expending and the amount I was drinking, despite me not feeling anxious (I guess the feeling your about to have an episode does make me a little anxious and maybe sometimes I confuse the anxiety feeling with the actual pre-syncope symptoms) but without fail every single time if I rapidly drink a good litre and a half of water I can bring back my pulse to its normal resting point or there abouts. This doesnt make me feel 100% better, I guess I still get very fatigued/wiped out (wired but tired?) and feel inwardly shaky, headache etc afterwards, but surely that would not have the same effect if it was in fact a panic attack? and also panic attacks don't generally last hours right? What makes me question my initial thoughts as well is I can do everything possible to relax but unless I actually salt and fluid load it makes no difference. I also understand that POTS can be mistaken a lot for severe anxiety and panic disorder so I guess because so many people keep telling me it might just be me that I am beginning to doubt myself. I am also starting to question whether there is a little bit of hyperadrenergic POTS involved (as the feelings prior to these attacks feel very much like I have had a release of adrenaline (again I can't differentiate that between the feeling of anxiousness that I'm about to have a flare or whether it is actually happening..but they usualy happen at times when I don't actually have anything of note to even stress me out (although I guess they do occur quite frequently after exercise) if that makes any sense. All I can say is that the first time it happened I was obviously generally panicked so it was much worse. Now I know what is happening I just deal with it, knowing that it has always got better. The reason I question this at times when these happens is because I got this more likely after a bad viral infection... which is not usually linked to hyperadrenergic POTS and all my symptoms only started after this. I guess i'd rather it wasn't either as then my exercise program wouldn't have the desired effects I am hoping for even though it would still help. Likewise I do get spikes to blood pressure but these only occur during these episodes with fluctuations between high and low and not in between so again I don't know whether some sort of panic in these situations is masking the low blood volume/blood pressure aspect and therefore I do have a relatively common variation of POTS - as of yet I have had no other testing due to the relationship between the viral infection. I guess it would be just good to hear or reassuring to hear if anybody else gets the same 'flare/attack feelings' and experience them similar to me. I guess the fact I am definitely better than when I initially got diagnosed is brilliant, it is just a little bit disheartening that these 'attacks' just seem to be so random in nature and can occur when I feel like I am having a 'good' day, but then maybe I overestimate my 'good period' and then forget to drink. Or maybe I really do need to be more stringent with my salt/fluid intake than I am being. If I can drink till the cows come home and prevent these from happening completely that would be my ultimate goal I guess! Thanks for reading the ramble!

No problem at all Katie, I really appreciate you taking the time to get back to me when you do. I hope the migraines passes quickly - I understand fully how painful and debilitating those can be! Sending positive vibes and look forward to hearing from you shortly x

Hello, I am assuming that I just had a regular celiac blood test - I am not sure what that is per say but it definitely wasn't a genetic tests, I believe it was looking for some specific type of autoimmune marker that may be raised in celiac's. I guess my symptoms have slowly being getting worse ever since I was about 14, and just last year I was diagnosed with largyngopharyngeal reflux, most likely GERD and also suspected IBS, but I haven't been given any formal diagnostic testing such as scoping etc. At the time my doctor told me I was too young to 'undergo such trauma' despite me being 21 years old. However lansoprazole and gaviscon have only done so much for me and having being on a treatment dose of lansoprazole now for over 40 months at 30mg, I was beginning to question whether that was actually now just causing low stomach acid which can have exactly the same symptoms it seems as having excessive amounts. I think I'll definitely be giving the gluten-free a good go, because if it sorts all this out, I don't care how much I love bread I can't be living with this! It feels like its just getting worse and I don't know how much POTS itself has to do with that at this point! Thanks again for your reply!

Just to add my experience in regarding beta blockers. I take propanolol and I notice that it definitely makes my sleep worse if I take this immediately before I go to bed, so I cut my dose down a little bit and I notice a little improvement. Before I would wake up at regular intervals during the night for no particular reason and sometimes have nightmares which I never hardly ever get at all. It is definitely mentioned as one of the side effects of these drugs though, but like others have said the more cardio-selective ones should reduce this

So funny you should say this regarding the raw pineapple. A few days ago I had canned raw pineapple out of a tin after my main meal which I have had before so know that wouldn't cause me any significant bother, but since I have been diagnosed I hadn't eaten any raw pineapple up until this point. Around 15-20 minutes afterwards I just felt a build up of really horrible nausea/lightheadedness that made me have to be sick and afterwards I had really bad stomach cramps. I've never experienced anything like it before, although I will say I feel really nauseous a lot of the time after just eating anything really, although less so with particular foods which I have yet to work out properly. A few people have mentioned to me regarding MCAS just on various things I have posted and my symptoms pointing in that direction. When I feel particularly bad I do get facial flushing on my cheeks which to me is quite noticeable just because I never had this before. I have also noticed that since february time when symptoms got worse but we didn't know what it was that I almost developed hay fever over night with really bad pressure headaches, congestion and gritty/dry eyes. These symptoms got really bad throughout June, July and August and have cleared up a little now its late September. I also have a sore throat which I seem to always wake up with and is mildly waiting in the background at all times and I've also had quite a lot of bother with my ear of late too among other things. I also specifically made a post regarding panic attacks as I was randomly having them (or what I feel like are panic attacks but I just don't feel anxious at all before they happen) that always occur either after I have just eaten something or after physical exertion or when I'm really really tired; where I know I have pushed myself a little bit further than I should have done. I get tachycardia during these episodes and a blood pressure that rises quite high but also quite low intermittently as well and I get visual disturbance too. I also have joint pain across my back, arms and legs which seems to be constantly there no matter whether I have done exercise or not. I also am extremely fatigued all the time at the moment and have really bad circles (I know this can sometimes be a feature of underlying allergies - which makes me wonder because even though I've been prone to getting them all my life they are really bad a the moment to where I sometimes look in the mirror and think what is wrong with you! You've actually had a decent nights sleep haha. I know a lot of these things can be POTS related, such as the fatigue but sometimes I feel I question why I still feel so rotten even though I have a beta blocker controlling my heart rate a little more and I know my tachycardia is a lot better than it used to be. Would be great to hear back from you if our symptoms sound similar regarding your MCAS diagnosis etc. just to see whether I should maybe pursue it further. I do remember in the hospital being asked if I had hayfever when the doctor thought I had POTS but he dismissed it almost straight away as I didn't have the classic red eyes and runny nose. I started taking the H1 and H2 blockers a while back but stopped after hayfever season was over - I didn't know whether they were making too much of a difference, but I do know there is an oral mast cell stabilizer (sodium cromoglycate) that people find useful, so your experiences on these (assuming you are also on them) would be of great value too. Thanks in advance, would love to hear more from you!

Thanks for both of your replies. I am going to attempt to start a vegetarian/vegan style diet with gluten-free mixed in too. I've heard a few people where this has not only helped but made them almost symptomless after a period of time. I'm not saying that will happen in everyone and it may have a lot of do with a number of thins and might take a little bit of time at it, but I may as well give it a go at this point. When I initially got diagnosed I actually attempted to cut out a good amount of gluten, but I did slip up a lot of the time, probably eating things that contained gluten that I didn't know about and then eventually reverting back to my old ways. I did notice a slight difference at the time but then I don't know whether this was my symptoms getting better to a certain degree on their own. However, now that my stomach issues are almost as bad as my other POTsy issues I am getting a little fed up which is why I have decided to do this. Can I ask you both if you were both tested for celiac prior to this dietary change? Mine came back negative, but I don't know whether this means we have some sort of gluten intolerance which wouldn't be surprising considering stomach issues are intertwined with POTS anyway.

Do you attribute that to the lansoprazole or to the diet changes you have made already? Sorry for the late reply! I don't attribute to the tachycardia getting better to my lansoprazole no, but I do think just over time after my initial diagnosis that after 4-6 weeks my tachycardia slightly improved although I would put this down to building my exercise up on a daily basis.

Hello all, Just wondering if anybody can give me any advice regarding changing diets etc. I have always had acid reflux but it has never interfered with my life. Ever since being diagnosed I just have horrible symptoms, mixed with IBS and at times I will eat something and it will make me physically vomit rather than just being nauseous making me think I am in some way allergic to a number of things. I have taken lansoprazole etc but this really only helps to a certain degree and doesn't help at all with the bloating, sickness and generally really unwell feeling I get after eating. Sometimes its only mild and other times it can be rather bad. I also feel like it may be contribute largely to why I am also sooo excessively exhausted. I have come across 'Deliciously Ella's' blog, a young lady who else had POTS and appears to have gotten symptom free after 18 months via exercise and changing her to diet to become entirely vegan. She now no longer takes medication. I am at the point where I will literally try anything to feel even a little bit better and I really do think that my stomach etc has a lot to play in why I feel so hideous - my tachycardia isn't anywhere near as bad as it was before. My question is what are your thoughts on diet changing, juicing for possibly related gastroparesis (just ordered a nutribullet to try this out) and cutting out gluten, sugar, carbs etc. Would love to know all your thoughts and what you have done yourselves in an effort to change the way things are!

Hello, I guess this is just to see if anybody else is in a similar situation or has had similar experiences. I am diagnosed with POTS but I guess the random symptoms leading me to think I was half crazy and the time it took to get anybody to listen, no doubt I have to accept has made me anxious. Now that I have been diagnosed, I obviously am more aware of why I have certain symptoms, but I seem to have a lingering anxious feeling that won't go away, which every so often turns in to what I can only think are panic attacks which happen at the strangest times, mostly when I am not doing anything much at night time and am feeling overly sleepy. What I have noticed however is that they have always occurred during times when I feel really tired or have possibly over-exerted myself (after exercise trying to cure this thing!) Its almost as if my body gets a really tired, weak feeling and because it makes me feel so terrible, in the deliriousness my body starts to panic for no particular reason. Really I think this is one of the worst things that is holding me back at the moment as I am due to start an exercise program which I will have to undertake every day, yet I am starting to worry that I won't be able to keep up full commitment if I keep having these horrible episodes which make me feel extremely horrible and this lasts in to the next day too (mainly because I get very little sleep after them). I am also thinking that possibly my IBS/acid reflux is being exacerbated by this too as the drugs that I have tried only dampen these particular symptoms a little bit such as lansoprazole/zantac. I had tried an SSRI (Zoloft) a few months ago and I know they take a few weeks to work, but the initial symptoms were beyond what I would deem acceptable, especially when I was at a pretty low point in the whole process. So I quit taking it. Initially this was more to try and correct the autonomic side of things rather than low mood. Now I've begun to think that anxiety is playing a bigger role than I would like I have recently been prescribed pregabalin (lyrica) which I see quite a few people are on here. Initially this was a consideration from my neurologist due to the headaches, chronic fatigue and vague aches and pains I was getting all the time. My question is has anybody got any advice surrounding pregabalin and whether it has taken the edge off of the anxious feelings that I guess a lot of us get with this illness? Its just a little disheartening as I was never ever an anxious person before all of this! Thanks all in advance

Your diastolic is just a little on the low side, try and increase your fluids if you can. It is completley normal if your having a potsy flare!

Thanks so much for your reply Jan, yes this was my idea to completely cut it out completely for the time being, so I am glad somebody else has had a positive experience when this route was undertaken. Did you have an feeling your symptoms were getting worse around your period before you started taking the contraceptive?

Thanks for your reply Goschi. I feel like sometimes if I just push through I actually feel better after the exercise, but I am interested to know whether I can just get some sort of long-term goal out of it.

Oh whilst you mention about the compression stockings, do you also work out with the compression stockings on or have you been advised against this? Thank you for your reply too!

The title pretty much says it all - tmi subject! But I am just wondering what people's experiences are if they were put on a birth control pill, which type etc. as I find that despite my beta blocker providing some much needed relief all my symptoms just came flooding back on the first two days of my period. I know there is some research out there to say that some people do benefit from them, especially those that do think hormones play a role in their case. Any comments greatly appreciated.

Hello, Just interested to see who has had beneficial results from exercise, I know there are a number of factors which have contributed to people's recovery but can any of you say exercise alone has had a considerable impact? I am about to start an exercise program at my hospitals gym and have also purchased a rowing machine (as recommended by my cardiologist) to kick start this. Has anybody else had any positive benefit from the Levine protocol as well? The problem I have to overcome at the moment is the horribleness that I feel after and especially the day after (or for a number of days after) I do even minimal exercise. I am trying to ascertain whether the gain outweighs the pain, pretty much, because I am happy to feel worse for now if I know that in a months or so's time I will at least see even the hint of improvement. Any experiences shared will be appreciated!

Thanks so much for mentioning this! This is true before, especially the first two days are definitely the worse and leading up to.

Gosh that sounds exactly like me, I wear the mio alpha heart rate watch during the day and take it off just before sleeping and literally I'll move an arm in bed or slightly turn over and my heart rate will jump a ridiculous amount of beats and so forth. Interesting to know that somebody else has that too. Really glad beta blockers have helped you, will be trialing them today to see if I see a difference and will post my experience Hope you are having a lovely day

Thanks so much for your reply Krissy. Really good to hear that it has helped you function and deal somewhat with a lot of your symptoms. I do sometimes think I also have a bit of IST together with my pots just because of the variability of it from laying down or standing. It doesn't just seem to follow the general pattern of POTS although I have this diagnosis. Have you ever thought that some of your symptoms have been contributed to by noradrenaline and the anxious side of things? Although I'm not in an anxious situation or feel like I should be anxious I feel that's how some of my symptoms feel as though that's how I would feel if I was anxious (sorry if that doesn't make sense). I know beta blockers can be helpful for that too by blocking these neurotransmitters so I don't know if that would be helpful just from that perspective although I'm sure my exhaustion is a lot to do with my erratic heart beat. Will be trialing doses over the next few days. My original prescription for IST was twice a day but I know for PoTs that taking it 3-4 times per day is often more beneficial. But again thanks for your time writing your reply it is much appreciated.

Ah yes you definitely have a good point about trying and seeing since you have to take them multiple times per day they definitely don't last long! Thanks for reminding me. And again thank you for your reply too, it is much appreciated

Thanks for your reply imapumpkin. Its interesting to find that you said that it actually stopped excess fatigue rather than causing fatigue directly, as I know beta blockers can make people feel more tired. I am going to a CFS/ME clinic in the middle of October I guess to see if they think I have some sort of overlap with this, because at the moment although I have POTS I am physically exhausted 24/7 even if I have had a really good nights sleep, the sleepy feeling often makes me feel really ill if I push myself too far. So it would be interesting to see whether this was caused by my erratic and tachycardic pulse rather than a separate entity as I know fatigue is a big symptom of POTS.

Hello, When my problems really started to interupt my life it was thought I had inappropiate sinus tachycardia and as a result I was given propanolol 10mg to start to take, however I was told not to take them before my ECHO so I actually ended up not taking them at all as thats when things then get a lot worse and I was in and out of hospital being investigated for POTS. Since my diagnosis, my cardiolgoist seemed reluctant to start me on a beta blocker unless I really wanted to as he said in many cases people feel worse because although they do lower the heart rate which can prevent some of the symptoms they often counteract the mechanism by which the body is attempting to make up for the POTS'ness. As a result I am in two minds about whehther it would be a good idea for me to consider just starting the propanolol to see if it makes any difference to me. What I do not want to find is that it actually causes me to feel worse! I am also in the process of getting an exercise plan started up, a bit like the levine protocol, and I know although he does not accept individuals onto his POTS registry who take medication at the same time, he does recommend specifically propanolol in his research articles, which is interesting. I am also aware that 10mg is a low starting dose, but that it may also help with my anxiety too as although I don't feel there is any need for my anxiety when it gets bad (usually post exercise) it is happening anyway, so anything to help that situation might help my overall outlook! So my question to all of you that do take some sort of beta blocker, I would love to know your experiences. Do you think they have drastically helped your symptoms or have they made no difference or made you feel considerably worse? Everything is much appreciated and I look forward to reading your replies.

Just interested to find out what sort of symptoms others experience after exercise as sometmes and how often it hits you. I don't know whether this can all be attributed to POTS or whether there is a chronic fatigue syndrome cross-over. The day after I have been on the recumbent bike even for 15 mins or so I have noticed I feel much worse in terms of fatigue (even after a good nights sleep), muscle aches and pain and the big one for me is a sense of anxiety which is unnerving the next day. I've also noticed this is attributed to random spells of lightheadness or an 'off feeling,' blurry vision (difficult to describe) that can just make me feel horrible. I used to feel very bad instantly after exercise but now it seems to be delayed somewhat until the next day when it really hits me. Would love to see what other peoples experiences are and what symptoms they get, including if you have any similar to me. Also how long after the activity do you start to feel the effects?

Ear fullness and nasal congestion was one of my first weird symptoms of POTS. Was first thought both were a mixture of my TMJ and possibly allergies playing up but then either issue has never affected me to that extent in the past where it would distract me from what I am doing at the time. Occasionally I also get a quick ringing in my ear that usually goes away in a few seconds but leaves me feeling a little strange/lightheaded. Haven't noticed that these are exacerbated on standing as I can get them when I am sat up as well but everything does get a bit worse in an upright position anyway.

I was actually interested in this concept myself. Every now and then I have episodes of really exaggerated symptoms. These 'episodes' come on quite suddenly. During these times I seem to get what I would class as feeling overly anxious when I am literally doing nothing that would make me, I get the chills (sometimes I can feel like I am having hot flashes though), a feeling that I really need to eat something, irritable, headachy, weird blurry vision (best way I can describe it), shaky (almost like an inner trembling feeling) and heart palpatations/thudding, paleness, nausea . if I monitor myself during this episodes I always have tachycardia, even on sitting/laying down on top of my POTS tachycardia. My blood pressure during this time can be quite erratic also. I feel very faint often, and my BP can swing between being really low and also really high (maybe the anxiousness has a contribution to this, but even when I am feeling as calm as I can be its still raised). Also my pulse pressure can often be quite low when this happens or I have a higher diastolic reading. Afterwards I usually feel quite exhausted/weak and I usually have quite bad insomnia afterwards as it takes a while to get over it! Often since I feel the need to eat and also drink something (as sometimes I get a dry mouth I have noticed my symptoms tend to begin to die down after this and my BP returns to a normal level (whether this is coincidence I am not sure). What I also find quite strange is that before I was actually diagnosed with POTS I would always feel like I should carry snacks around with me and a drink as I felt the symptoms resembled those of being hungry even though that probably wasn't the issue. I would be interested to hear if anybody else had a similar experience? The only things I can note as being a pattern when these attacks happen (usually once every 2-3 weeks) is that I have either felt a little more exhausted than usual after a bout of exercise, I have had a long gap between meals or shortly after I have had a heavy meal and also I have found it linked to the fact I have not taken my B-complex vitamins for that day. I know some of the B vitamins have a role in glucose control but whether it is far fetched to say this is of specific note, but it is just strange that I have only forgotten to take this vitamin on 2 days, and both those days I have had an episode. Usually if I have an episode they have always occured between the hours of 9-11pm. It seems as though when I have been admitted to hospital nobody has mentioned anything regarding my blood sugars being abnormal. However I am going to check with my own monitor that I have just bought to track myself before and after meals and also in relation to exercise as I have heard a lot about reactive hypoglycaemia being linked to people who have POTS and other types of dysautonomia. Originally I had suspected it might be a flare up of IBS as during these episodes as I can also have an urge to go to the toilet (TMI!), but I just can't wrap my head around feeling so absolutely horrific from that and that maybe that is presenting itself as another symptom of hypoglycaemia as I am usually fine throughout the rest of the day. I usually doing some light exercise on a rowing machine around 7-8pm. Usually I feel rather exhausted afterwards but today I decided to have snacks before, during and after alongside having a good drink and I have felt so far a lot less exahusted afterward. Again this could be just a fluke. Any opinions would be greatly appreciated! Hope this helps you Jerry even if it is just that our symptoms sound a little similar