Csmith3

I didn't think too much about this when I posted my first reply, but this thread seems to have raised some interest. In my case, I am almost certain it is not related to hypoglycaemia. I am not diabetic. Years ago, the doctors thought I might have reactive hypoglycamia and I had all sorts of short and long term tests to try to provoke a reaction, but to no avail. I've had a quick browse on the Internet, but can't really find anything. It might be adrenaline, but I can't help thinking that if I have an adrenaline rush during the day, it doesn't feel the same as this. For me, it feels like I've suddenly come down with some terrible illness with a fever and uncontrollable shaking. It really is quite scary. I am totally lucid when it happens. Thankfully they don't happen very often at all and I know that they will pass within an hour and then I'm fine. I'm most tempted by the "body in shock as it has been woken suddenly out of deep sleep" idea. Maybe that is the same as an adrenaline rush, it's just not so snappy!

Hi I am quite clumsy and found the traditional neti pots difficult to use and ended up covered with water! I bought a syringe version (Nasaline) which solved that and it would be possible to use it when seated. If you are new to this, make sure the water is warm and add salt and bicarbonate of soda to make it isotonic - there are various recipes on the Internet. Regarding EM's response, some people say you should not use neti pots if you already have an infection due to the risk of it spreading further. I have found that sometimes nasal irrigation works and sometimes it doesn't and wish I knew why. Anyway, I tend to use mine when my sinuses have been relatively clear but are just starting to clog again and it seems to work well for this. It's also helpful to use it just before I do something which I know will aggravate my sinuses (eg, going on a long car journey) which can avoid a few miserable days. Good luck!

For me, it's not just the ability to sit down all day that is important, it's flexibility in terms of deadlines. I would hate having a job where I had to guarantee being well at certain times else I would let people down. I have an office job in finance that works pretty well for me but I have to use some of my own time to keep up with it. I have recently tried to encourage my Dad to do some exam supervision. Here, we found it involves either approaching the school directly or the professional Institute that is setting the exams to see if there are any local vacancies. There is a big distance learning university in the UK that takes on tutors. The benefit of this is that most of the work is home based and timing is flexible. There is a bit of face to face tuition and you do need to be contactable by email or phone, but if you have something similar, that could an option. Maybe you could approach your university and see if anyone is looking for some help proofreading books/articles or drafting presentations, particularly in your chosen fields.

Hi Summer I've had a flu shot for the last 8 years. The shot comprises a heat treated (and therefore dead) virus so I know that it can't give me flu or anything else - it will only produce the desired immune response. However, I have sometimes felt a bit "under the weather" for about 24 hours afterwards; not a flare up of POTS, just a bit fatigued. The jab will only give protection over the three most likely strains of flu (which is obviously forecast some time in advance to allow for mass production of the vaccine). This forecasting process happens every year to take into account new mutations and the movement of new strains around the world. So, it's not a guarantee against all strains and some years it proves to be more effective than in others, but it is helpful to a lot of people. Most of the evidence for UK shows it is effective in about 65 -70% of cases. On a personal level, there have been times at work when the only people that avoided flu were the ones who had the jab. Due to production methods, don't have it if you are allergic to chicken or eggs.

I find nasal irrigation has its benefits, but is more preventative than curative. I would be reaching for the decongestant if I had got to the point of jaw pain. Also, targeting the solution to the correct sinus cavity is quite an art (and one I haven't mastered).

Hi Sara Yes, I have had that. It used to happen more frequently when I was a child. Now it happens rarely, say, once a year. It tends to happen late at night when I'm trying to get to sleep or when something has suddenly woken me up. It lasts about 30 - 60 minutes and I feel horrible, particularly for the first 15 minutes or so. It has just occurred to me that it is not unlike the feeling I sometimes get after fainting, except that only lasts about 10 minutes. The uncontrollable shivering is odd, particularly as I'm always in bed when it happens so I'm nice and warm. It's hard to lie in one place and let it pass, which is perhaps why you have used the term panic attack. But eventually it dissipates and then I drop off to sleep. I haven't noticed feeling any different the following morning and it has never come back the same night. I have no idea what it is and have never had it investigated. I doubt it is blood sugar as mine is very stable.

Ernie Can't answer your direct question, but had a thought. In the days when I ran and cared about my heart rate for a different reason, I found a sports bra where the front part of a HR monitor fits into some slots in the normal elastic bit at the bottom of the bra so you don't have to wear the uncomfortable elastic belt that comes with a HR monitor. It was designed with the Polar monitors in mind. The design also stops the monitor slipping down. The one I had was from a UK manufacturer Triumph (Pulsebeat range), but no doubt there are others available. I wouldn't say it was the most comfortable thing ever, but it did address some of the downsides of having a HR monitor with a chest strap. Catherine

Cardiactec I hope tomorrow goes smoothly and this brings you some long awaited improvement to your health and quality of life. Very best wishes, Catherine

I saw a rheumatologist for the EDS diagnosis which took one consultation. He specialises in joint hypermobility, EDS and similar. He came recommended by the ANS doctor. I am lucky in that I have few day to day problems with EDS so I haven't needed to go back to see the rheumatologist for any treatment or pain management advice. But it's nice to know there is someone I can see if problems start arising. It was also useful to have an hour or so's chat to understand why I get the joint problems, skin easily cuts etc. so I know what is normal for me and what would need further advice or treatment. There is a joint hypermobility association in the UK that has a web-site with forums like this. It is clear from that site which are the two main places to be seen by an appropriate EDS specialist in the UK. It is also clear that some rheumatologists outside these two centres aren't that familiar with EDS and people with quite severe problems have had poor consultations and been treated as malingerers. I appreciate you are in the US, but maybe the EDS US site would have some recommendations or suggestions so you see the right person. Catherine

Don't be ashamed of not going - just be firm and say you are too ill. 60 miles is a long way and there will be time pressure to complete the distance as well as the physical exertion of walking. I think it would be easier to give it a miss rather than try to do some of the walk. I appreciate it's for charity, but presumably if you have any sponsorship, people would still donate even if you couldn't do the walk. Perhaps an alternative is to drive to a strategic point to give the others drinks/food midway?

Hello Jennifer I think EDS is measured in terms of how extensive it is (i.e. how many parts of the body are affected), rather than overall mild/medium/severe. I would get it checked out if I was you as it can go on to explain a variety of symptoms, which at least brings some satisfaction, if not direct improvement! It is also worth getting checked out in case you are in the small minority that have the vascular type, which would need monitoring. Catherine

I agree with ajw that we seem to be prone to headaches, but the sources seem to be quite different. I have spent a great deal of time and effort over the last 15 years or so trying to get rid of my headaches. I have made good progress as they were daily, and are now less frequent and much less painful. It seems there were several things going on and I list these as an illustration of how many things can cause quite similar feeling headaches, rather than as a guess to the cause of yours. Untreated whiplash from an accident - getting this treated years later reduced the severity of pain Sinusitis TMJ causing pain around ear and jaw and referring pain around eyes and cheek Trying to treat the above with painkillers too often so the painkillers were giving me headaches! Being deconditioned - then I get direct and referred pain from trapezoid muscle in neck, shoulder and jaw. I'm still trying to improve the situation so no doubt there are other causes too! In your survey you mention pain in the back of the head. I sometimes get pain at the crown which I believe is often caused by dehydration. I think you said you pain was much further down, towards the base of the skull. I think that is more unusual and I would maybe pursue this is a distinguishing feature of the headache.

I just wonder whether the newer headache you are talking about is sinusitis given your description - particularly as you mention leaning forward makes it worse, it is one-sided, variable in intensity but persistent and unresponsive to painkillers. Sorry, I don't know if it possible to get more than one migraine simultaneously.

I took it for seizures some years ago and it didn't work. I get a few migraines (maybe one a month) and it didn't make any difference to those either. I was on quite a big dose by the end and the side effects really started to show (nausea, hair loss, weight gain, felt sleepy), but they weren't that bad and would have been quite tolerable if the drugs had worked. Certainly better than a daily migraine. I know someone (without ANS issues) that takes the drug when she gets migraines (rather than all the time) and it has been great for her and the only thing that has worked and stopped recurring clusters of migraines. Probably since she just takes them as and when necessary, she doesn't suffer from the common side effects I mentioned above. Hope it works out for you.

I can certainty empathize with your issues. I have held myself back at work whilst my health has been impaired and then continued in a more junior role to take the pressure off a bit. My job is pretty hard and stressful and I felt that taking a more responsible job could just tip me over the edge. The thing is, I have done this for a few years now and my bosses are all saying that I am doing the more senior job anyway, just not getting the recognition for it. I am (hopefully!) about to rectify this with a promotion. It doesn't stop me feeling nervous about the situation. There are a number of things that have helped me carry on at work and have positively influenced my decision. Firstly, there are several people with the sale role as me at work. If I am too unwell to go to work, someone else can cover. I have also been able to introduce some flexibility in my hours which helps (eg. go in a bit later on a morning). I don't know if I have made the right decision in taking a promotion, but I would say that it becomes increasingly difficult to work at a role below your capabilities both at a personal level, and I found is distorted the structure at a wider department level.

I've posted here before about vasomotor rhinitis and the chronic sinusitis that has driven me mad for about 15 years! It took ages before I realised what it was. I don't think people realise how miserable it is to have chronic sinusitis. I don't know whether they are bacterial infections - I've read conflicting information and I was never offered antibiotics. But, I am glad to say it is much better now. Unbelievably better, so there is hope! I've tried various things and I'm not sure which brought about the most improvement. The thing is, once you find something that helps and breaks the cycle of chronic infection, it makes such a difference. But it's finding those things that work for you. The things that help me are: * Ipratropium bromide nasal spray (this is for vasomotor rhinitis, rather than the steroid sprays which are not as effective)* Avoiding triggers, in particular transport fumes (eg, I avoid trains with windows that open, I don't use air conditioning in cars). * Nasal irrigation helped a bit * I had a load of dental work redone and at the same time I had some TMJ issues sorted out with a bite plate. One or both of these made a drastic improvement and basically stopped the never ending infections. The sinus cavities can be linked with upper jaw and perhaps some tooth decay was fueling the sinusitis. Or I know that my problems are partly structural (but cannot be corrected with surgery), so maybe the jaw realignments helped. I don't know but things really improved after all the dental visits and it cannot be coincidence. * When I get really fed up with it, I take Sudafed. I know I shouldn't (makes me tachy) but at least a couple of 12 hour slow release Sudafed will bring some temporary relief. * I try hard not to pick up colds and if I do get a cold, I take something like Sudafed from the beginning to try to stop my sinuses getting any worse. Good luck!

Sara Low progesterone isn't a problem I have had (or not that I know of!) I have a contraceptive implant in my arm which releases synthetic progesterone. It hasn't made any difference to my POTS symptoms in general (though fewer periods does help). I don't know about the side effects of the pill regarding your gastro complaints, but maybe an implant could be a solution?

Thank you Carolyn and Katja. I have looked again at bipolar and temporal lobe epilepsy. I can't truly relate to either - there is something that doesn't quite fit. Maybe it's that I am conscious of the normal me whilst I have these mood swings, so I am aware that I have, for example, nothing to be depressed about. Fundamentally, there must be something wrong with the levels of neurotransmitters in my brain and perhaps it is not necessary to try to attach a label. Whatever the cause, the first-line treatment seems to be SSRIs (the depression is more common for me than the euphoria and I don't think I would start doing anything crazy!) And I suppose that brings me back to my surprise that so far no one has totally related to my experience. Levels of neurotransmitters affect the autonomic nervous system and many of you seem to be taking (or have taken) SSRIs, though I appreciate this was only for dysautonomia and not depression. To a non-medical specialist like myself, it doesn't seem that surprising that my feelings of depression accompany (and the euphoria precede) major POTS episodes.

Yes, I would be very annoyed about being described in that way - it is very unprofessional, unnecessary and hurtful. These sorts of incidents seem to arise quite often, so don't take it too personally. And didn't your local cardiologist tell you to keep presenting at the ER at each episode of chest pains? However, I'm not sure I would move doctors right now. That would depend on what I thought of local doctor before this incident. You seem to be in the middle of a big case review and I think I would have some consistency at this point. Depending on how well you got on with this person (before the recent email!) I might take the email along next time you saw them and embarrass them in a joking way and assess their reaction. I would then make my decision on whether to look for someone else. Is there another doctor (PCP?) who you could mention this to. They may be able to recommend an alternative or be in a position to assess whether it's worth forgetting about this incident for the sake of your long term care. I suppose another option is to use faraway doctor on a longer term basis once things have settled and you don't need to consult very often. This is not what you need right now!

Thank you for reading my post and for the comments. I have had a look at bipolar references, but don't think that is the answer in my case. Bipolar episodes seem to happen on average less than once a year and last for at least a couple of weeks. My symptoms are much more transient in nature and less serious, for want of a better word. Sara - I can relate to what you say. I probably try to do too much and sometimes, when just sitting at my desk is a big effort, people will make demands that seem reasonable to them but are the last straw when I am already struggling! I usually try to remove myself from such provocative situations but it does not get rid of the low mood. What is perhaps most telling is that 70 people have read the message and not replied, so this is clearly not a common issue for people with dysautonomia. Thanks again.

I am wondering if any of you can relate to this. It's something I have mentioned to a couple of doctors in passing and received no reaction, but feel I now need to escalate. Sometimes, and it tends to start shortly before a POTS episode (but not every time), I feel on top of the world and then an hour or so later I am very depressed and irritable. I'm not talking about the depression that goes with chronic illness or clinical depression. These feelings of depression I get only last a few hours or perhaps a day and then suddenly, and for no apparent reason, they go and I'm back to my old self. My friends and family have commented on how I seem temporarily to have a different personality. I know I'm doing it, but can't seem to change my behaviour. I think these episodes of depression are switched on and off like, and perhaps with, my symptoms of dysautonomia. I know the short-lasting nature of this means it is not true depression. I wouldn't say it felt like any sort of anxiety. I have recently become aware of something very similar to what I am describing that happens to some epileptics (interictal dysphoric disorder), and bizarrely it tends to happen when they are relatively well and seizure free. The apparent interchangability of anti-convulsants, anti-depressants and the use of these to treat dysautonomia makes me uneasy, particularly as I am looking for a long term solution. I would be very interested to have your comments and this will influence which doctor I raise the issue with. By the way, before the POTS diagnosis, I went down the epilepsy route many times before to no avail.

Yes, I think vasomotor rhinitis is a diagnosis of exclusion - ie, you have symptoms of allergic rhinitis, but no allergy can be found on testing. The specialist I saw also mentioned that people with vasomotor rhinitis often mention that certain things, eg, cold air, make their symptoms worse where there clearly can't be an allergy and it's the same things that come up time and time again.

I'm with Lois, I would assume for the moment that it is Prinzmetal and pursue treatment. If I didn't see an improvement after a few weeks, I would reconsider going for the test (not that I've ever had it done so easy for me to say). If the chest pains are every night, I couldn't ignore them and, stating the obvious, it must be making you tired. I'm also wondering what they would do if Prinzmetal isn't confirmed with the test. If they have no plausible alternatives in mind, I would be even more inclined to try the calcium channel blockers (or even risk upping the nitro dose). I've had a quick look on the internet and keep seeing the mysteriously named "Cardiac Syndrome X" with a similar presentation and diagnosis by exclusion. I expect you have seen this before and I think the treatment is the same as for Prinzmetal in any case.

Sorry to hear you are in so much pain - it sounds awful. Could you get a referral to an NHS dental hospital (or attend the A&E dept if there is one)? I turned up to a walk-in clinic at a big city dental hospital a few years ago. A doctor recommended it; I didn't realise they existed. I had to go very early as there are only a few slots allocated per day on a first come first served basis and was seen by a consultant, got the x-rays and treatment all in one day. It was something outside the scope of expertise that my dentist has so I was delighted to get it sorted quickly because I was in agony. And it was free! The walk-in clinic I went to is meant for genuine emergencies and people who aren't registered with a dentist. However, if your usual dentist can't fix the problem, it doesn't seem unreasonable to get another opinion. I also think it is sensible to see your GP as the pain is over such a big area that it can be difficult to pinpoint the source and maybe it isn't in the dentist's remit. Good luck!

Yes, that all sounds familiar to me. And I agree with the depression. I know it's not real depression in terms of medical diagnosis because as soon as I feel "normal" again (ie, hours later), the feeling of depression has totally gone. Like the others, I would make a notional distinction between an episode (as you have described) and a crash (when the symptoms are worse and constant for weeks or months at a time).