Csmith3

You are describing aspects of autonomic dysfunction but my instinct says that either there is more going on than POTS or it isn't POTS.

I expect you already know that you are listing quite a lot of symptoms in common with autonomic neuropathy. POTS can be a cause, but there are many more possibilities. If you haven't already, I would visit a neurologist who has expertise in autonomic dysfunction.

As POTS is a syndrome, there is variation in symptoms and it is possible to see subsets of people on here experiencing similar symptoms. I have different symptoms from your son (no hypertension or tachycardia when lying down) so I'm afraid I can't offer any specific help. I would also echo previous comments that sudden onset of such severe symptoms is uncommon unless there has been significant trauma.

My heart goes out to you and your son who must have had a very difficult 15 months. Best wishes in finding the cause as soon as possible.

Do any of you with EDS have issues where you DO NOT make calluses?

The bottoms of my feet have always been so soft, even as a teenager going barefoot with karate. I would never be able to grow calluses, the skin was so soft it would rip and tear off my toes. Even now with blisters from burns or wear, they don't callus over, they stay soft and the skin just tears.

I have been told by my PT that I probably do have some sort of connective tissue disorder because of "freakish" flexibility. I don't have stretchy skin or dislocations either, but I am very bendy.

You foiled me by starting a new thread as I typed my answer, so a cut and paste from another thread...

Yes, I get this. The skin on my feet is very soft and tears easily if I get a blister. Very annoying in summer because if I wear shoes without socks, I end up with cuts everywhere and there is no such thing as "getting used to" a pair of shoes.

I've been told I have EDS3 plus signs of another connective tissue disorder (Marfans/not sure what!) I think it is just unfortunate genetics since my father has EDS and my mother is hypermobile and has poor quality connective tissue too.

Do any of you with EDS have issues where you DO NOT make calluses?

The bottoms of my feet have always been so soft, even as a teenager going barefoot with karate. I would never be able to grow calluses, the skin was so soft it would rip and tear off my toes. Even now with blisters from burns or wear, they don't callus over, they stay soft and the skin just tears.

I have been told by my PT that I probably do have some sort of connective tissue disorder because of "freakish" flexibility. I don't have stretchy skin or dislocations either, but I am very bendy.

Yes, I get this. The skin on my feet is very soft and tears easily if I get a blister. Very annoying in summer because if I wear shoes without socks, I end up with cuts everywhere and there is no such thing as "getting used to" a pair of shoes.

I've been told I have EDS3 plus signs of another connective tissue disorder (Marfans/not sure what!) I think it is just unfortunate genetics since my father has EDS and my mother is hypermobile and has poor quality connective tissue too.

I don't think it affects me much and is definitely worth it for a holiday. I have flown long and short haul and even to NZ a couple of years ago and was fine.

I get travel sick which I think is fairly common in people with POTS. For me, air travel (provided I keep looking straight ahead and don't read) is probably the best form of transport in terms of minimising nausea. I tend not to eat a great deal when travelling and maybe that helps because post-prandial hypotension is a big POTS trigger for me.

The obvious drawback with flying, unless you have lots of money, is lack of leg room. I don't really like being still for that long in a relatively upright position. However, it is no different to most cars, trains and coaches and at least with flying you cover a big distance in a short time! I try to book seats with extra leg room and on-line check-in makes it easier to do this.

It is good to hear your daughter's symptoms have improved. I hope you have a lovely holiday.

I agree that chronic sinusitis is really miserable.

I found an ipratropium bromide spray made a huge difference to me; much more effective than the usual allergy sprays. It helps if you have vasomotor rhinitis (which is an autonomic condition) and it really improved my sinusitis and the endless nosebleeds from the nasal swelling. I apparently don't have allergies but I also take antihistimine pills and they have a small positive effect.

Can you tolerate decongestants? I find only the slow release 12 hour ones work. They do make my POTS worse for a day but it is worth it sometimes to have a break from the sinusitis, particularly if the pain spreads into my cheek/jaw.

I tried coming off dairy products. It did have a small positive effect, but I don't think it would ever have reversed the sort of chronic sinusitis in several cavities that you are describing. I went back to eating dairy products because the improvement wasn't worth the hassle.

I was thinking of asking about surgery again. I was told about 15 years that I wasn't a suitable candidate and they would probably make it worse. With new surgical techniques I was hoping to get a more positive opinion this time around. Have you discussed this with your ENT?

Some medical conditions do need to be notified to the DVLA, but not all. For example, a simple faint with prodrome which does not happen when the person is sat down is not notifiable. However, if someone is repeatedly fainting and there is a suspicion it could be, for example, a seizure or serious heart condition which could happen at the wheel, that is notifiable. There are, of course, many variations on a theme. I appreciate that the DVLA website for the public says that fainting (as a single category) needs to be notified, but this is a simplistic message. I can understand why they do this because they don't want people to self-diagnose or never get a medical opinion when they really should.

In my view, there are two ways of approaching this. You can tell the DVLA there is a potential issue, fill in the forms and your case can be assessed by a medical adviser. Or, there is guidance for medical professionals about what is and isn't notifiable and have that conversation with the consultant or your GP who is familiar with your case and take their advice. Some of this guidance is available on the DVLA web-site if you want a feel for what is and isn't a problem. If your doctor says you need to notify, then obviously you have to do so. If not, you can save yourself some form filling, insurance issues and a temporary ban in the meantime.

I am assuming here that someone has had a neurological and cardiac work up so that the high risk conditions have been ruled out. If you don't have a firm diagnosis but are having issues with loss/altered consciousness, the answer will invariably be that you have a temporary ban on driving until the cause, triggers and frequency have been identified as far as possible.

Rach - sorry to hear you are having a hard time. I hope things improve for you soon. I suppose that whilst you are in the early days of diagnosis and starting treatment, you might have to wait a while before you can drive again. I won't tell you how long I had to stop driving for(!) but you are in a better place now than I was 20 or even 10 years ago.

Shelly

I hope you have some joy with the local cardiologist. If not, ask if you can see Adam Fitzpatrick or one of his team in Manchester if you are still in the area. They have all the relevant expertise and I imagine they have more capacity than Prof Matthias' team so you could be seen sooner and would not need an inpatient stay for testing.

The GP won't prescribe midodrine without a UK consultant telling them to do so.

Good luck!

There aren't enough people with POTS for there to be a set course of treatment so I think people on here would give a variety of answers. I think it depends which symptoms you want to fix and whether you have any other conditions which may affect what you can take. Whoever you see (and I've seen POTS specialists and people who don't know much), it seems to be a case of trial and error with a few appropriate medications. None of the medications are authorised in the UK for use with POTS, so it is a case of finding a consultant who is willing to prescribe the drugs because they take the risk by prescribing off-label. Dare I say, access to the medications is more important than the person prescribing them. I hope none of my doctors read this forum!

I think you have done the hard bit and got the diagnosis. The consultants I have come into contact with have been quite willing to try the main POTS drugs. If I were you, I would try the local person. It is not surprising that the "falls clinic" consultant is mainly dealing with geriatric patients. It is a similar knowledgebase to POTS so I would give it a go unless you happen to live close to one of the specialist centres like Newcastle.

I have kept the management of the condition with the hospital rather than the GP which I prefer because if I get in a bad patch, I feel I have access to the right people to fix it. This might be more feasible at a local hospital than one of the specialist centres who can be more focused on diagnosis of difficult cases than ongoing treatment (which, to be fair, is probably a better use of their time). Whilst I have seen neurologists in the past, I have tended to stick with the cardiologist because I am mainly taking cardiac drugs.

It was a good move changing GP because you need them on board to keep prescribing the drugs.

If you are looking to fix other symptoms then my experience is that you will need to manage that (i.e. sort out the referrals with the GP. You may find you end up seeing a few consultants, each mainly interested in the symptoms which fit into their specialty).

Hang in there. You should make progress this year. Once you find a drug that works, it really does make a big difference to quality of life.

I used to get this a lot and sympathise because diarrhoea and being on the verge of fainting is not a good combination. I felt sick for about half an hour afterwards too and then I am perfectly fine.

It tended to happen if I ate breakfast when my body hadn't got going or if I ate a carbohydrate rich meal (and got post-prandial hypotension). Occasionally it happens if I have a bad reaction to caffeine. It was 95% resolved as soon as I had better heart rate control, by which I mean I started an anti-arrhythmic which proved very effective. I think this stopped the tachycardia response to autonomic triggers (I suspect the problem is blood pooling so there is insufficient blood to deal with digesting food) which must limit the BP slump. You sound like you are describing issues with blood volume being in the wrong place too.

In my case, I don't believe the trigger was GI related in the sense of there being a specific problem with the stomach or food intolerence. I am still wary about eating too much first thing in the day and prefer to have walked a bit first to minimise this happening. I have some peppermint sweets which I find can help calm my stomach afterwards if it does happen.

I was told that, technically, you should not get used to ivabradine over time.

However, I can empathise with your comments as my resting rate has climbed back up to where it used to be. I am about to increase the dose. I should add that in my case, I have some other health issues causing HR problems at the moment so that may be the reason.

Another option worth considering is having having depo shots or an implant. It is no guarantee, but in lots of people their periods stop and this can bring symptom relief.

I had 5 years of depo shots and it solved the problem. Then I wasn't allowed to continue due to concerns about osteoporosis. So I swapped to an implant and got lots of bleeding, but still symptom relief. Not such a good solution, but still worthwhile. Admittedly, I am also trying to relieve menstrual migraines in this juggling act.

There are other threads to search on if anyone is interested in the longer term (but reversible) contraception.

I have a desk job that involves a reasonable amount of overtime. About 5 years ago, I asked to reduce my working days from 5 to 4. I was lucky that my employer accepted without any kind of explanation.

I can't tell you what a difference it has made. I take Wednesday's off so I only have to work two consecutive days. (I used to find I felt worse on a Thursday as the week took its toll.)

In winter, my work is busier so I sometimes have to go in on a Wednesday. And then I reminded what a slog it is to work full time with POTS. I just end up spending my weekends recovering. But it's more than that. I don't have the energy to take care of myself properly and make decent meals etc, so I end up making myself feel worse.

It is quite easy to objectively measure my productivity at work and I realised that I get more done in a 4 day week than I did in a 5 day week. Not because I used to take a lot of time off (I didn't), but because I kept on going in even though I felt dreadful and just tried to make it through the day.

The other interesting thing is that the bosses at my work have also been pleased with the results. Before asking to reduce my hours, I thought they were concerned about me being unproductive and taking time off. It turns out they were really concerned about my continuing poor health but didn't know how to broach the subject with me.

I know I have been lucky in this respect, but I think employers are becoming more flexible in working arrangements provided the necessary work does get done.

My only other comment would be that if it looks like your POTS is going to last a long time, even if it is possible to work full time, it may not be desirable. Of course there are other considerations to take into account, not least money, but I think any chronic health problem can accelerate thoughts about downsizing or shifting career if it would result in a better overall lifestyle.

Hi Toni

Welcome to the forum!

I just add salt to food rather than take supplements, so can't answer your question. I think you have probably found the answer already - although logically it wouldn't matter to take more pills less often, salt can irritate the stomach in large doses.

I know that sick of hospitals/doctors feeling. When it passes, I would advise you to find a rheumatologist who knows something about EDS. Prof Grahame would be top of the wish list, but there are other competent specialists around the UK. It wouldn't require a commitment to a lot of visits and a diagnosis is possible in one visit. It can be useful to see someone who may spot other EDS related problems that you should keep an eye on, get advice on damage limitation and any available treatments. I also find it reassuring that should I have a problem in the future, I know who to phone up to see rather than go through the GP system once it becomes urgent.

The joint hypermobility website (www.hypermobility.org) and the forums within the site are worth a visit. There are details of Prof Grahame's clinics and some other specialists.

Best wishes

Statistically, there is a 50% chance of passing on EDS (or any other genetic condition). Even if you do pass it on, it does not mean the child will necessarily have the illness to the same severity as you. I suppose another thing to bear in mind is that a lot of people suddenly get ill with POTS even if they have EDS, which suggests some other factor or trigger is implicated even if the propensity to develop POTS is already there.

If I look at my family, very few have EDS. My Dad must be a carrier, but has not developed any troublesome symptoms.

I think if I felt well enough to look after children I would have them even if I did take the risk of passing on EDS/POTS.

Best wishes

Very occasionally, my BP goes high when I'm on midodrine, but it is only a temporary problem (for a few days). I will ease back on the midodrine and other measures and let it settle down again. I say other measures (salt, compression), but I think it's cutting back the midodrine that has the only significant effect on this BP spike. Then I'm back to normal. I have no idea why my BP suddenly goes high so I accept that sometimes it will. Admittedly, it only just into the high BP bracket (but compared to normal, it is a big increase), so I have no reason to get too concerned.

If it was helping you before, I would give it another go. Given it's so short acting, you can just keep an eye on your BP and adjust accordingly.

Hi Emma

Welcome to DINET! I am sorry to read you have had a rough time over the last couple of years. Do you know what brought on the sudden downturn in your health? Had you been ill with something else?

Anyway, it looks like you are getting all the right testing and treatments and I'm pleased you are reporting some improvement. Sounds like a full time job with all that testing!

Best wishes

Hi Tilly

Yes, I agree that exercise is one of those areas where there can be a complete lack of understanding by both doctors, friends and family. You are not imagining that it is harder for you than the average person - it really is. Your body is already working harder than most just being upright, so any sort of activity will put additional strain on you. Plus for many of us, it takes longer for our hearts to return to a normal rate and recover.

I wish I knew how much activity was the right amount to do for maximum benefit without risking a set back from overdoing it. I'm not sure there is an answer - it depends on how you feel that day.

I suppose I err on the side of caution and tend to do a little less than I could manage. I am an occasional attender of an aerobics class for the very old and unfit. I have no shame anymore! Otherwise I tend to stick to things I can do at my own pace so I don't overdo it.

Best wishes

I must be lucky because it makes a real difference to me. In particular, it helps me cope in hot/humid weather, giving me more standing time and I generally feel less light-headed.

I wasn't sure at first that it was doing much as it can take a while to reach a useful level in the body so the improvement is gradual, but when I've had to stop taking it I've realised just how much it does help. I've never had any problems or side effects with it either.

Mine's generally about the same as yours and, like you, I am worse if it dips. I can feel symptomatic at 100/60. Much higher, and I think other factors are contributing to feeling ill.

For me, the critical thing is the diastolic pressure, though once the systolic is over 100, the diastolic is usually 70+ in any case.

In the UK, low blood pressure isn't considered a problem and there is no licensed treatment which is all very frustrating. This is on the basis that people with low blood pressure tend to live longer (quality of life doesn't seem to feature!) Therefore, it is usual for me to be told that my blood pressure is fine/normal.

I find fludrocortisone helps whilst I've had mixed results with midodrine. This makes some sense to me as fludrocortisone ought to raise the diastolic whereas I found midodrine mainly raises the systolic pressure.

This is probably just an excuse, but I find it very difficult to keep up the "healthy" lifestyle. To me, to do the list of things that would be helpful to our health looks like a full time job. I know that when I'm fit, I am generally in better health but for some reason, it is difficult to motivate myself and, as you say, it's even harder when you are feeling low or hitting a bad patch. I suppose I would try to do one or two things at a time rather than worry about following all the recommendations. You sound like you are doing very well with the lifestyle changes and I wouldn't worry about any minor slips.

Over the last 2 or 3 years I feel I've come out and been more open about dysautonomia. I don't go for a long or medical explanation unless requested, but just occasionally drop into normal conversation (when relevant!) "Standing makes me ill", "I can't drink alcohol as it makes me ill". My most used phrase is "I have run out of standing time [and need to sit/lie down/go home]". I am now open about hospital appointments and say "Tomorrow, I'll be in late because I'm seeing the cardiologist." People know I see a variety of specialists and generally don't pry which suits me as I don't want to explain my medical situation all the time either.

By dropping in these small comments into the conversation, over time the people I see a lot start to realise that many things make me ill and this is all a bigger deal than they originally thought. They also learn useful things like not to stop and chat to me in the street if there is no seat available. I've been pleased even with the small acknowledgements and understanding I have received.

Maxine

I admire your tenacity and I'm pleased you are making progress with the neurologist. Thanks for sharing the new information.

Best wishes

It is a different set up in the US which has more flexibility - here it really needs to be an exceptionally good GP. And even with an excellent GP who has capacity to give this level of service, it all takes time as they get to know you, the illness and who to refer to. No one will readily be able to answer all your questions because the knowledge of the mechanisms that cause the illness aren't fully known. Also, medicine is just too complicated for someone to have a specialist knowledge in everything, so the GP is the generalist to manage you as a whole person.

If you are thinking, Cath you are in another world looking for that excellent GP with spare time.....well yes, the reality is it's probably you that will have to manage the condition and manage the GP, at least in the short to medium term. You are both going to be learning for a while unless your GP happens to have other POTS patients.

If dysautonomia were more common (like diabetes), there would be a hospital clinic with a coordinated service between departments. But for most less common conditions, it's a case of a set of specialists all trying to do their best. The cross referrals are all part of the package, I'm afraid, but you do need to start with the GP to start the process off.

I tend to see one specialist at a time, get all the testing up to date, try a few medicines and find the best treatment plan. Then I leave them alone and accept that the treatment will do for a few years. Next time my health is on a bad patch, I'll sort something else out and see a different type of specialist. This might sound crazy, but if you find you are in this for the long term, it gets tiresome going in and out of hospital and trying new drugs and sometimes it is best to just accept what you have rather than constantly looking for new fixes and improvements. It's also important to only vary one thing at a time in order to assess whether it is improving your health or not.

You will see lots of people on here telling you to keep copies of any letters you get with test results or diagnoses. It is good advice. It is also wise to take a copy of these to any new doctor you see in case your GP doesn't send them with the referral. It can save a lot of time and repeat testing.

Good luck!

I suppose that deep down, I always knew there was something wrong with me that most people didn't have. Like Tilly, I was generally seeing the same doctors, and once you have been brushed off or misdiagnosed, it is difficult to go back.

When I got into a really bad patch of health and struggled to hold down my job and carry on with normal day to day living, people would start telling me that I should go to the doctors and get it sorted out. I knew they were right and eventually enough people would say it to me and I felt that justified me going back to the doctors and asking the same questions again.

Sometimes, not paying for healthcare is a bad thing. I felt guilty I was taking up doctors' time that could have been spent with others. This was partly self-inflicted but a few doctors certainly reinforced that message. If I had been paying, I think I would have pursued it further. I acknowledge that not everyone is in the fortunate position to be able to pay and this isn't a general political statement that one system is better than the other.

As time went on and wonderful things like the internet appeared, it became increasingly apparent to me that I had been misdiagnosed. This really annoyed me because it looked like they had given me very poor advice and had no basis for the diagnosis. At this point, the credibility of a lot of my doctors disappeared and I had the confidence to take control of the situation. So I did and I sorted it all out as far as is possible. And it really wasn't that hard.

I tried the tell your doctor your symptoms and hope they come up with a diagnosis and it didn't work. I do think POTS is a difficult one as we tend to hold back from telling the doctor all the symptoms from fear of being labelled a hypochondriac. But certainly when I first went to the doctors about 20 years ago, it wouldn't have mattered if I had told them all or not given the lack of knowledge on dysautonomia. What continues to annoy me is that instead of saying they don't know, they feel they have to diagnose something categorically even if it's the wrong thing. I spent a lot of time and energy disproving incorrect diagnoses instead of looking for the right diagnosis.

After about 10 years of trying, my doctors got close to the right diagnosis, but not close enough. In the end it was me plus the internet/an online academic library I had access to due to a part time course that enabled me to self diagnose. I found a review article on POTS and was convinced I had found the answer. To be fair, so did my GP.

I smiled when I read the bit about leaving the doctors to do their job. If you have a good doctor, that's fine. If you haven't, it's lottery time. I am now very intolerant of poor doctors and have no qualms about showing them up if they give poor advice. And I'm afraid that in the UK, there are quite a few of them in general practice which is often considered the poor relation to hospital medicine.

The thing with forums is that you want to keep the opening thread reasonably brief so people will read it, but invariably end up missing parts of the story which people then pick up on. I've been there too!

It sounds to me like you are stuck with your situation if you want to keep the scholarship. I might get shot down for this, but if all possible, I would put up with poor health for the year to get the degree finished. It might not be pleasant, but if it's manageable you might just have to accept it. I do sympathise that your college isn't being more accommodating, but it seems you have already suggested reasonable compromises to no avail and if you escalate further, you risk losing the scholarship.

Maybe try to streamline other aspects of you life so you have maximum energy to devote to finishing the course. You must be some way into the course already - well done for getting so far and try to hang in there, the end is in sight.

Best wishes