stephsurf

Forgot to mention... I've heard the vagus nerve passed around a little and it being a vaso-vagal reaction, however I would seem to think this would result in me having really low blood pressure. Occasionally this does occur at points during when my blood pressure becomes erratic but a higher blood pressure predominates, so I don't know whether this fits. Can a large amount of air (from swallowing so much air maybe related to having to drink so much) actually cause something to be pressed on that may cause such erratic changes? Whilst I was at hospital and I was attached to a Holter Monitor there was occasions when it would flash up saying I had, had a PAC/PVC. Another theory im thinking is possibly when this is bad, this causes me to get the pounding sensation in my heart along with all the other symptoms and as a result this leads to momentary changes in my blood pressure. When these stop possibly this is when my symptoms cease. Does anyone know whether this is closely related to acid reflux/hiatal hernia and ibs?

Hello, My question is regarding both IBS and acid reflux. It is already known that I have acid reflux and have suffered quite badly with this for about 7 years. I take a high dose PPI now which seems to get rid of a lot of the symptoms I come to associate with that. However, in February time I was diagnosed with suspected IBS (before my POTS diagnosis) but it is thought I had POTS at the time but obviously it just wasn't identified. After around four weeks of rather bad POTS symptoms, this week and last I have been feeling a lot more energised and with it. Alongside this my bowel flare ups have been almost non-existent much to my relief as everytime they would happen I would get a faint feeling which obviously isn't very pleasant at all. However, every 2-3 weeks I have what seems to be a flare up. A flare up of what however I do not know, but my suspicions are it is possibly IBS or there is some sort of bowel connection - I just never knew it could feel so awful - so possibly the POTS/dysautomnia has something to play here. These 'attacks' have only ever occured in the early evening (whether that is coincidence or not I do not know). I usually just get an all over feeling of something being off/wrong. Initially this obviously made me feeling panicked, but now I am used to this randomly happening I am as calm as can be at the same presentations occur. At this time I always have an urge to have a bowel movement, feel like I am full of air and burp alot, feel lightheaded, nauseous, dry mouth, shivery, shaky, headaches and just a sensation of awfulness. Without being too TMI usually the urge to pass a motion seems to fizzle into nothing or very little and this can go on for an hour or so with the feeling coming on and off, and eventually when I do pass something the sensation and feeling of horribleness tends to calm itself down. It never seems to go however until I actually sleep it off as my body just feels really fatigued and achy for the rest of the time I am awake. I also sometimes get itchy palms after the episode seems to have begun to calm down. What I have noticed during these episodes which I cannot understand or cannot seem to relate to IBS is during these episodes I have really erratic blood pressure readings. My blood pressure normally swings anywhere between 100/60 up to 120/80'ish on a general day to day basis, however during these times my blood pressure is usually high e.g. 145/110 and very much all over the place. My diastolic is usually always >90mmHg. My question is, has anybody else experienced these symptoms specifically in relation to the erratic or high blood pressure? I know hyperadrenergic pots can cause high blood pressure, but these attacks occur so randomly and are few and far between that I can't really think it would be that. The only other thing that I can relate to these attacks is since I got diagnosed I started taking Vitamin B-complex multivitamins, each of which are around 1000% RDA including B12. I haven't been diagnosed with a B12 deficiency, nor has my blood came back suggesting I am anaemic (however I haven't had a specific Vitamin B12 test), but the only two other times a flare up has occurred this badly including this time is that I haven't taken the B-complex tablet that day. Is there a common link between these things that I am missing? Would love to hear other peoples storys regarding the above, even if our IBS symptoms sound very similar, even to make me just feel a little better that I am not the only one! I guess each time it happens it feels so alarming and that something isn't right that its difficult to think that, 'its just IBS!' Thanks in advance. I appreciate everyone taking the time to reply. Have a lovely day x

Exactly the same as tesss above

Hello Sue, no worries at all. Hopefully I can explain it in a little more detail to help you better understand. I do pharmacy so have a background with drug mechanisms etc but please tell me if I'm being confusing! We all have beta adrenergic receptors in our bodies which are sympathetic. In other words when stimulated they can in extreme cases induce the fight or flight response. That would be the increase in heart rate, blood pressure, feeling of anxiety, sweaty palms to name a few that any normal person might feel if they are feeling anxious or in our case is heightened more so. This response is caused by neurotransmitters which bind to the receptors to initiate this response. For example this will cause the blood vessels to constrict which will increase blood pressure. There are however different types of beta adrenergic receptors such as beta1 and beta2. Some of these receptor are found in the heart such as beta1 and others such as beta2 are found elsewhere in the body such as the lungs and airways in the smooth muscle. Propanolol is a type of non cardioselective beta blocker which means it doesn't entirely act on just the beta1 receptors that are found in our hearts and therefore can block the beta2 receptors in the airways. When this happens it can in some people it can induce constriction of the smooth muscle which in people are are particularly sensitive to this (such as asthmatics) can cause bronchospasms. This in turn can then instigate an asthma attack. In a normal individual who doesn't have underlying issues with their airways this doesn't pose any significant problem but as you have realised can result in some of the known side effects of propanolol such as shortness of breath which may give you a feeling of tightness. However it is worth noting that some people get an anxious feeling taking propanolol, usually this would subside after taking it consistently however I'm sure many of us with pots or any form of dysautonomia have some sort of on edge feeling which doesn't help and this could manifest itself in many ways such as a tight feeling. I hope this helps you understand further. Let me know if you have any questions and I'll be happy to try and answer them. But if it is concerning you too much I would advise having a discussion with your doctor as sometimes beta blockers in POTS patients can sometimes make us feel worse than when we weren't on them at all. This is because although it lowers our heart rate, the increase in heart rate doesn't have a underlying pathological abnormality. In other words the increase in heart rate is actually doing us a favour by pumping blood at a faster speed so oxygen can do its best to reach the places we need such as our brain. Reducing the heart rate a significant amount by beta blockers (which will also lower blood pressure somewhat) will counteract the two processes by which our bodies are trying to compensate for our hypovolaemic state. If we are preventing that from happening too much you will feel worse which again is why many POTS patients can't tolerate them. Obviously there has to be a balance between counteracting completley and our heart rates going far too high which will also cause the shortness of breath, dizziness etc that we are already used to.

Propranolol is not entirely cardioselective which means it can act on the same adrenergic receptors that we have elsewhere in our bodies. We so happen to have them in our airways too and this is why you wouldn't want to give a non cardioselective beta blocker to a patient who had breathing difficulties such as asthma. Maybe that will help you understand a little why you might feel possibly short of breath and have some feeling of chest tightness? Not saying you have asthma though, this is more of a side effect most likely in your case

Just a quick question if you don't mind. You mentioned if your bowel becomes upset. Do you sometimes find that prior to a bowel movement you'll get hot and clammy and feel your heart racing more etc? This is one of the things I've started to notice myself and if I look back on some of the first signs that I had pots, before I was diagnosed this was one of the first. Would be interesting to know as it's always just before.

When I said 7 hours I meant 7 years haha!

Hello, thank you so much for your reply it is much appreciated. It does make me feel better than someone else is also having symptoms in a laying down position and also when their heart rate isn’t supposedly doing much at the time. I have a daily headache now, whether it is a chronic daily headache I don’t know, but it sure does feel like that. It has been this way since about February to March time. It presents as a constant pressure type feeling usually just at the front of my head, but can sometimes go into my temples. The fact you described yours as a heavy cement like feeling sums it up brilliantly (in fact I may have to use that to describe it in the future!) I do have TMJ and sometimes I can feel this doesn’t help the situation but this usually just causes what I would call normal headaches which are relieved by paracetamol/Tylenol. However every so often I get a flare from my pressure type headaches into what I would class as a migraine. When this happens I do get a very weird change in visual perception (I don’t know obviously whether this is similar to yours) but it is almost like I can’t quite put my finger on it either. The best I can describe it as is like a disconnected feeling. I also feel extremely nauseous, very tired, the congestion in my nose which seems to build up just beforehand tends to turn into a runny nose and sometimes I get a watery eye, and very dry mouth (oddly just on my left hand side). Like you mentioned I get very irritable. I can go from calm and happy one minute and when this kicks in I just feel majorly angry and for absolutely no reason! What is interesting I guess is that I used to get classic migraines with a very distinct visual aura prodrome which used to last for about 30 minutes. I had these, usually every month, for around 7 hours up until last Summer (before my presumed viral infection which kicked off POTS). Often the headache wasn’t very bad at all preceding these, so I would just used to take co-codamol (paracetamol and codeine) and lie in a dark room for about an hour or so and that would help me a little to where it would be bearable until I slept it off. However these migraines I am getting now are obviously a lot different and for the most part don’t come with the distinct zig zags across my vision, blurry vision and loss of peripheral vision. Co-codamol also doesn’t help them at all, and obviously nothing up until this point has got rid of the pressure/cement feeling (which probably contributes to my brain fog feeling) since the beginning of this year when they started. I had an MRI done a couple of weeks ago whilst I was in hospital – which was done at the time due to a suspected chronic sinus issue (although I didn’t think that sounded hopeful as my symptoms just didn’t add up). Obviously this came back normal – although I have my doubts despite asking the messenger doctor whether my whole scan was looked at in depth or whether focus was just on the sinus’s, although I would hope that, that wasn’t the case. As a result I am getting copies on a CD so that the neurologist I am seeing next week can maybe have a second look at them, just in case. Out of interest can I ask what medication you are taking currently to be able to get rid of the constant pain? Has this also managed to get rid of the cement type feeling? I’ve heard triptans being passed about a bit but no one wanted to prescribe them for me due to my POTS issue and heart that’s playing up!

Hello, My question really is as the title says. Obviously our symptoms become more pronounced when we are sitting and especially standing, and especially so for long periods of time. However, since my diagnosis I have actually always had some degree of symptoms when I am laying in the supine position and particularly so if it is generally a bad day. As a result I started to monitor my heart rate with the Mio Alpha to see if I could link these times correlate to a specific increase in my heart rate. I found that often times when I can be feel pretty bad, my heart rate hasn't even increased by much, in other words it can be floating around 100bpm. Other times when I am completley calm and laying in bed and my pulse is between 60-80bpm I can feel at my worse and just have a gut feeling its going to be a bad today. For example I had a great 4-5 hours last night after 9pm where I felt great, honestly as close to normal as I have felt in a whole long while. As a result I probably did spend a lot of time upright and probably 'over doing' - relative to a usual day when I spend much of it laying in bed and occasionally getting up to exercise my legs. Today when I awoke I just had the sense I felt good still. I proceeded to have a shower standing (I usually don't do this anymore as it usually makes me feel quite lightheaded), I also skipped eating and my usual drinking of a 1L glass of water before getting up because of this (although I am aware that could have set me off on the wrong foot). Anyway I was like this for about an hour and since then I have felt horrible all day, despite drinking, increasing salt etc etc - however I have spent much of the day again in bed and so my pulse has bee relatively stable at around 75 bpm for much of the day, yet I still feel like this. Anyway I can tell when I get bad because I get quite bad brain fog, feel unusually sleepy, nauseated etc. I think one of my worst symptoms is a feeling of constant head pressure across my forehead which doesnt run around my head like a tension headache would (does anyone else get this? Its always there but gets specifically bad when I have a 'bad' episode - it gives me the feeling of almost wanting to lift my eyebrows to get rid of the 'weight' feeling), the coathanger headache and a congested feeling that runs into the top portion of nose and feeling of full ears which is made worse when I stand, I also feel rather irritable for no reason which can sometimes turn into a migraine (very much like a prodrome umbrella of symptoms, although this doesn't always occur). I can very well get these symptoms when I am lying down as well so I know its going to be bad when I stand. I guess my questions are: Do you find even spending too much time upright or expending energy talking etc. the day before can make you suffer the next day (as opposed to exercise)? Do you become symptomatic at times when your heart rate would be considered normal or when you are laying supine? Does doing 'bad' things in the morning such as showering upright, not drinking until after you get up etc really knock you for the entire day despite catching up on everything within a short amount of time? Does anyone else have a constant head pressure/sinus headache type feeling (possibly associated with a congested feeling that isn't allergies)? I think the doctors I have seen and complained about this to seem to skip over it likes it not a major issue, however its probably the most annoying to me, if only I could get it to go away! Thanks for any replies, they are greatly appreciated.

Hello! Thanks for your comment. I actually was wondering about this. I have actually sent off a test to check my vitamin D levels and am awaiting the results before I take any supplements. However I have consistently received normal pathology reports in terms of FBC etc. Therefore as far as my doctors am aware I do not have an anaemia despite multiple doctors beforehand saying I looked like I was most definitely anaemic. I started taking a supplement of B-complex the day before yesterday just to see whether I would feel any different and even though its early days I actually have noticed a vast improvement from yesterday - I took the supplement yesterday morning and by the evening time I felt so much more energised and then today I have felt better than I have done in a long while (considering I've felt like crashing 24/7 even after a full nights sleep). This could of course be a complete fluke! Is it therefore possible that I may have a deficiency rather than full blown anaemia which obviously wouldn't be detected? I am also requesting copies of my blood tests since last year when all this started to go down hill to see if I can see any decline as it seems my physicians office and hospitals didn't have each others blood test results but were therefore only going off one point in time!

I don't know too much in depth about the differences, LPR in my case seems to be linked to GERD anyway but LPR means there is a dysfunctioning of the lower oesophageal sphincter which causes reflux further up the oesophagus around the throat area - when it flared up really badly a year or so ago I had the globus sensation as if there was a lump in my throat and had swallowing difficulties and almost a tight neck/throat feeling, but I haven't had anything as bad as that again thank goodness! I know what you mean - I know I've always had an issue with acid reflux probably from my mid-teens but I never thought anything of it back then. Most likely since I wasn't feeling so horrendous then that POTS is a separate entity although I can't help think its made my symptoms worse, but thats most likely because like you said it is all part and parcel of the 'autonomic dysfunctioning.' Maybe because I have an underlying problem like yourself this may have just exacerbated it a little more than for others. If you do decide to cut out the diary and gluten do let me know how you get on. I can't say that I have been very stringent with it I did try it for around 2-3 weeks, although what your left with to eat can be a little disheartening! I guess in some people it can take a little more than a few weeks to see any difference so I may try it again after I get all of my other tests done and a definitive diagnosis! I am trying to get my vitamin d levels checked first as I have heard that could well be related to some of my symptoms and keeps getting mentioned time and time again on other forums I have been too in relation to people who have POTS and in my case could well be rather plausible (who knows)!

I also used to have a massive problem with drinking water and it making me feeling like it was just sitting and burping at the point was a big problem. I have found that since my POTS diagnosis and having to increase my fluid intake this feeling did subside quite a lot almost as if my body had got used to it, although I would still say the feeling does not feel nice! Sorry for the amount of replies! I kept forgetting bits!

I did also try to go gluten-free and cut down on diary for a little while (as I previously drank a lot of milk/yoghurt and cheese which I noticed was possible making me feel a little worse) and I am still undecided on whether this has actually reduced these symptoms, although I would say the bloating has been slightly improved. Whether that has anything to do with the diet or more to do with the fact I have been increasing my water intake I am not entirely sure. As far as the stomach virus feeling you mentioned, i will say over the past few months and also more so in the last month that my period has definitely exacerbated my symptoms especially nausea etc. on the day of and first day of my period especially so to the point where I feel almost like I have a bad case of the flu, despite me not really having any issues with this in the past.

Hello, I have always had acid reflux since a few years ago where I was diagnosed with LPR (laryngopharyngeal reflux) after a specifically bad episode. Since then this February it seemed to flare up again - my dr did not refer me for an endoscopy as it was proposed I was 'too young for such a uncomfortable experience' which almost seemed laughable. Anyway the normal dose of lansoprazole seemed to do little for me and she eventually put me on domperidone (I believe this is not licensed in the USA) and after researching it used for gastric motility as gastroparesis seems to be linked to acid reflux in some cases. At the time I didn't notice too much difference, but nausea was one of my main concerns (i hadn't experienced nausea with my previous episodes of acid reflux). I was on the tablets for around a month or so and after that my symptoms started to calm down. Since my possible POTS diagnosis just in the past month, unpredictable bouts of nausea (which make me feel horrendous and usually occur after eating) is one of the worst symptoms as it seems to exacerbate everything else as well, making me feel very tired and brain foggy. I have also noticed that my acid reflux may have got a little worse again too although this could be because I am spending much more time lying about. I haven't retried taking the domperidone or the lansoprazole as I had assumed this nausea was more to do with the general POTS umbrella but maybe it is in some way connected. It is also maybe worth noting that around February was the same time I had gone in for bowel issues and they diagnosed me with IBS as everything else was ruled out. In the past month I have also been having very similar related issues to this too - I guess you could say it does feel like a stomach virus but it is more episodic although at the moment I would say it is quite bad and making feel tired. My problem at the moment is trying to differentiate between whether I have a separate stomach issue to POTS or whether they both coincide with each other. It would make sense considering I have been feeling progressively worse for the past year. What do you think?

Thank you for your reply! Would you say that he is feeling any better after starting the vitamin D (I know you mentioned that it has been difficult to keep the levels up so possibly not)? Our usual blood tests I believe would have picked up a higher MCV related to B12 deficiency but this has not been the case, so I doubt I have this.

Woiuld you say you feel any better fatigue wise now, from what you felt initially that you have had the b-12 injections, as you said that your levels had plateaued? Or has it gone back down to how you were feeling before! Only reason I ask is because I think the fatigue is becoming the worst bit about all of this for me! Thanks Corina!

Hello, My question is how many of you have been tested for or suspect you have a vitamin deficiency, either vitamin D or B12 (as these seem to be the most frequently associated). Currently I am undergoing a diagnosis for POTS but the cardiologist is 99% sure it is the case just from bedside testing and monitoring but as such I haven't been given any drugs to trial. On a side note my POTS seems to be purely related to tachycardia not low blood pressure and this varies on a daily basis. The problem is I can't really pinpoint a cause as such for my symptoms. I did have quite a bad viral infection at the end of last year however, this was only suspected and it didn't really coincide with the typical viral symptoms that you would expect to get back from lab work and vitals (in my eyes anyway). I have heard that vitamin deficiencies are highly likely in terms of causing cardiovascular type problems and to be honest in terms of sunlight etc. a Vitamin D deficiency could technically be plausible although I have always kept a healthy and varied diet I realise we synthesize most of our vitamin D from the sunlight. The only reason I am leaning towards this is apart from the lack of sunlight, a lot of my symptoms persist on laying down, I have quite a few sleep related issues/insomnia, muscle aches, quite bad neck aches (which has no doubt contributed to my stooped posture), clicking & popping, pressure headache, very bad exercise intolerance, nausea, fatigue, brain fog (best as I can describe it), acid reflux, paleness, general feeling of weakness etc. Although I do realise these do all coincide with POTS these symptoms have seemed to come on progressively and only very recently got really bad. I am considering getting a home self-test kit via the hospital before I attempt any supplements just incase the results are remarkable. What are your experiences with these supplements/stories? Thanks for any help!