Csmith3

I think the answers become clearer with time once you find a level at which you can operate and try a few things to see what works for you. It may be that you have to sacrifice your dream career to have a workable lifestyle. But so many people find this is a dilemma, whether it is health, family or something else unexpected that gets in the way of the original career plan. Equally, new opportunities arise in areas that you least expect and these can end up being more fulfilling than your original plans.

I have posted this link before, but thought it was worth posting again in case anyone hadn't seen it. I like the sense of logic applied to the complex emotions brought about by chronic illness and it gives me some comfort.

http://www.alpineguild.com/COPING%20WITH%2...%20ILLNESS.html

Best wishes

Eek, that sounds grim. Sorry, not something I can relate to. Perhaps someone else will know. Maybe it is something else you have picked up and that has also triggered POTS symptoms. The first time I got a sinus infection, didn't realise what it was and had it for ages. What caused me to seek help was when it drained because I felt really sick and dizzy and was a little like you are describing, but not quite.

I find my POTS symptoms are worse when the seasons change. No idea why.

On a separate point, maybe get a BP monitor (even a ?10 one from Lloyds chemist). It can be reassuring to check BP and HR are OK when you are ill.

Hope you feel better soon,

Cath

Certainly in the UK, these days universities and employers have to do their best to make things work when people have illness related limitations. Discrimination laws mean that the onus is on them to accommodate everyone where possible or have a robust specific reason why they cannot do so.

How about getting your college to take some of the initiative rather than feel you are having to make excuses. Tell them you want to complete your course and have the academic ability to do so. But you might have to unavoidably take some time out now and then. You could probably get the work done at another time, just not necessarily to fit in with their standard schedule. What can they do to help you? Offer some suggestions and see what they say.

When I was at university, I went in no matter what. But it is nothing to be proud of because I achieved so little in most of the lectures. I made up the study time during vacations and in the period between lectures finishing and exams starting. My view is this sort of strategy is possible for some of us, but is a last resort. I did it because I had no diagnosis at that time and, to an extent, it was what I was used to through school.

Janey - I know what you mean about people saying after the event that you looked ill. I have had so many people do that to me in recent years now I am "better" and weigh a sensible amount having resolved most of the GI issues. It makes me smile when people say it to me who only knew me for a couple of years and say I looked terrible during that time. I looked like that for about 15 years!

Headaches: where do I start! I used to get them every day. Now much less frequent, but I think I will always be prone to headaches.

In my case, there were many causes and over the last 10 years or so I have managed to identify and treat some of them. It has been a long haul but life is much better now. For what it's worth, mine were due to sinusitis (partly due to non-allergic rhinitis and this being set off my all sorts of things like perfumes), problems with TMJ/teeth straightening created problems, old whiplash injury, hormone related migraines...... At one point I even managed to give myself the painkiller headaches when the body gets too used to being dosed up on headache pills!

Anyway, my point is that it is worth trying to get these things solved if at all possible. My latest thing has been getting my jaw/poor bite sorted out. I never knew that the trapezoid muscles go from the shoulder blades, up the neck and round the top of the jaw. Some of the pain I had attributed to "coathanger" pain and a separate headache was in fact the jaw muscles being unhappy.

I have. He was great and I like that hospital (as much as anyone can like a hospital!) The tests they run depend on the patient, so I wouldn't be too concerned about comparing specific test details. I didn't have anything nasty or intrusive done.

I don't really like talking about specific doctors and hospitals on an open forum, but feel free to PM me if you would like to know more. I'm going away for a few days and will be back on line midweek.

When I saw your signature, I assumed you had already seen him + former UCL colleague. If not, I would be interested to know where you were diagnosed.

Best wishes.

I definitely agree about using the freezer a lot. When I'm well, I'll batch cook some meals (eg, slow cooker meals with meat, potatoes/rice and vegetables) and freeze several portions. Then I can just microwave a portion when I'm not so good, and at least I'm eating something decent. I always have milk and bread in the freezer. I get fruit and vegetables delivered once a week so I don't have to carry heavy stuff like potatoes and citrus fruits.

I now live somewhere without stairs and have been pleasantly surprised how much it has helped.

I live somewhere new so there is little house maintenance required. It is also a managed site. I'm not sure if this translates, so I mean I have a lease and the freeholder is responsible for the upkeep of the external areas. This means someone else does the gardening, cleans the windows, cleans the communal areas etc. It is not necessarily a cheap option, but has been very helpful to me.

I am fortunate to live close to a town centre and transport links. More or less everything I could need is within a 10 minute walk. This helps me to feel less isolated if I'm in a bad patch.

The internet is a wonderful thing and as well as keeping in touch with friends and family, getting groceries etc on line is always an option.

Good luck!

Yes, I have. But I have avoided going for a permanent birth-control solution. (I have an Implanon implant in my arm, lasts 3 years and has been great for me. I find it less of a hormonal rollercoaster than some of the other shorter term methods, even those that use the same hormones. Anyway, I digress.)

I would be wary about going for a permanent solution when you are going through so much emotionally already.

Generally I don't feel great on a day to day basis. But just occasionally I have 2 or 3 good days together. In that short time, I am obviously very happy as I can do the things I would like to do. Interestingly, I find that my wants and aspirations change and having a "normal" family life starts to be appealing. I can suddenly relate to my friends who are out looking for partners and looking forward to the time they have their own family. Then as soon as I start feeling ill again, those feelings disappear. I go back to being happy with my lot and accepting that I don't have the physical or emotional energy to cope with a child. However, just in case my POTS did miraculously go or was brought under good control with medication, I am reluctant to go for the permanent solution.

For me, a bad patch means poor physical and emotional health. To get out of it requires an improvement in physical symptoms. Without this, I cannot stop "feeling low".

So it's a case of resting and sleeping and trying to eat reasonably well. And waiting until things improve. In the meantime, if I feel like wallowing in sad movies etc, I do. I am extremely miserable to my poor friends and family (think very grumpy teenager). Luckily, they have come to realise that the situation is temporary and to ignore my extreme pessimism in these situations!

As soon as I start feeling better, hey presto, I'm happy again and can get back to normal. But I can't force the good/optimistic mood and, if anything, trying to achieve this whilst feeling ill makes me worse.

Hope your situation turns around soon.

Best wishes

I don't know how old you are, but I'm not sure they are designed for what you have in mind. Certainly in the UK, they are aimed at 40+ year olds and mainly to detect calcium deposits in the heart (ie heart disease) and certain cancers (primarily lung cancers in smokers, but also colon cancers and a few others) at the very early stages. The advice here is only to get a scan if you are in a high risk category for heart disease or lung cancer. The selling point is that the scan is more accurate than those used in routine screening, so treatment could be started early.

I would also check whether it is truly a full body scan. Often they target certain areas only (heart, lungs and cancer hotspots) rather than everything.

What it isn't is a tool to diagnose the unknown and I wonder if it will get you any further in your search for the cause of your pain, particularly when you have had several scans to no avail. Don't get me wrong, I do sympathise with chronic pain and your frustration. I guess you need to discuss the best approach with your doctor as the scanning companies do just that, scan and look for obvious abnormalities, and you need someone to put this in context with your medical history and deal with any follow up.

I have had POTS symptoms since childhood. It was different when I was younger in that I would crash, then recover for a while. Now it is constant, but probably not as bad as the crashes I had between the ages of 15 and 25.

I was never aware of the fast heart rate until I developed a heart arrhythmia in my 20s. Which makes me wonder whether I actually had POTS before that or it was just a combination of VVS and low BP. The only thing I do recall was that my resting heart rate was very high, so there must have been some sort of IST.

There are many signs of dysautonomia in one side of my family and two people besides me have had POTS/orthostatic hypotension and the symptoms with it (one male, one female). However, my Dad would meet the POTS diagnosis but doesn't have the symptoms and never has had. He has incredible exercise endurance. I suppose the only notable things are that his resting heart rate has always been very low (though goes higher than mine on standing), whereas those with symptoms have tended to have a higher resting rate. I don't know the other family members well enough to know if they would meet the criteria for POTS, but I do know they aren't symptomatic.

After 25 years of this, I am pretty confident my POTS is not going. I don't believe I could have changed the present outcome. I have two doubts over cause/prognosis. One relates to Michele's recent thread and a neck injury I sustained about one year before my symptoms really kicked in. But even before that injury, I was a fainter and had very poor standing tolerance so it would only account for part of the story. The other is hormonal; I wonder if I will be much better after the menopause, and temporarily worse before it. Time will tell!

Cath

Yes, I also know what you mean. My problem is partly that I have poor muscle tone in the neck and shoulders (and everywhere else if it comes to that!)

Years ago, someone recommended using a simple theraband to improve muscle tone. So a lateral pull down-type exercise and then with the arms in front at shoulder height (palms up), moving the arms out to the side which stretches the band. It really helps me. I think it's a classic recommendation for office workers who complain of the same sort of weakness, though on a milder scale/aren't also dealing with dizziness.

Hi Tilly

Sorry you have had a rough time. When I see someone say "my doctor says this is rare", I interpret this as "my doctor doesn't have the expertise to deal with POTS".

I went around the health system passively for many years before I took charge, sent an email to one of the specialists I had seen and said "I need to see someone with expertise in POTS and dysautonomia. Are you that person or can you recommend someone". He recommended Prof Mathias, who was an excellent choice because I had other neurological issues but there are other perfectly competent specialists around the country with the necessary expertise and diagnostic equipment - it's just finding them in the first place. You can either go down the neurology route or cardiology and the latter seems the more obvious option to try first. From your story, I would try for the Manchester Heart Centre if you live anywhere near them or a similar centre if you live elsewhere. Maybe you could get an onward referral if your local team don't have an answer. As persephone suggested, STARS is a good starting point and you can call them for a recommendation of who to see in your area.

Hang in there. Once you see the right person, life is much less stressful because they understand how you feel and don't need to be convinced that POTS is life altering. And, of course, they have the best chance of making you as well as possible. There are no magic cures here (though POTS can be a short-medium term problem), but there are treatments around that can make all the difference to quality of life so don't give up hope.

Best wishes

Lavender

I'm sorry you had a disappointing appointment. This hit a raw nerve with me as I have had some poor GPs who fobbed me off and held up my diagnosis and treatment. I regret being so passive in the process of managing my health.

My view is that if that's the best he can come up with, it's even more important you get a referral to someone who knows what they are talking about. I realise POTS is a very specialist subject for a GP, but what I don't understand is why they don't just admit this and refer on.

I don't know exactly how your health system works, but I would give him one more chance to come up with something or put him on the spot to refer or come up with a better plan.

Before your next appointment, could you email the hospital to ask if they have any expertise to diagnose and treat POTS? If they say no, you could ask their advice on the next nearest place to go.

Good luck. You deserve better than this.

KarenW, Gwen

Great stories, really made me smile - thanks so much for sharing.

Cath

Alas, yes, I think you are asking too much. Given that no one understands the mechanisms causing the symptoms of POTS and that POTS is probably several different conditions which are all being classed as one thing until someone knows better, I think you can't expect anyone to tailor an answer to you. It has to be trial and error by definition. But it's not quite as bad as you suggest. It isn't so much that no one knows about the treatments and you have to guide them, its more that the treatments don't produce consistent results in POTS patients (and, again, lack of detailed knowledge on the cause of POTS) which means it has to be trial and error on an individual patient basis.

I realise this is not a good answer, trial and error can take ages and I am at that point (again) where I can't face trying anymore drug combinations for now so I do know where you are coming from. But unfortunately, this is how it is at the moment. This isn't a reflection on the doctors - why should there suddenly be lots of autonomic specialists with all the answers when there aren't that many patients to treat? Where is the funding for research coming from when there are more lucrative markets for the pharmaceutical companies? If you were a doctor, would you choose to specialise in dysautonomia? Good quality research and clinical trials take many years. This is the reality of medicine and yes, there are inequalities between different illnesses.

Anyway, back to the original post. I think they have a point that once you have a diagnosis, most doctors will use the try the same treatments in a similar order. If it were me, I would still rather see the specialist just in case they thought my fact pattern suggested a particular answer and it is nice to speak to someone with some real understanding about the issues POTS causes. I can see the point of view that these advantages would be nice but may not be necessary. I suppose it depends how far you are prepared to travel and on any cost issues. These sorts of things don't really make any difference in the UK so I don't know what I would do in your position. If you did go for the local option, I think that if you don't respond to any of the main drugs, I would then see a national specialist to get their thoughts on what's the next best thing to try.

Sorry to be the bringer of bad news! Best wishes for whichever path you choose.

Cath

Hi

I'm not sure how relevant this is, but I used to get lots of really bad nosebleeds (vomiting blood, going on for hours, ending up in hospital etc). They tended to be worse at this time of year. With hindsight, it was probably a mixture of triggers for my non-allergic rhinitis and maybe some allergic rhinitis. I also have a structural problem which isn't operable, chronic sinusitis and have since discovered I have EDS3 which probably didn't help.

Once you have had a few nosebleeds, the blood vessels are so weak that it doesn't take much to have another one. And if you are losing a lot of blood, all the other POTS symptoms are going to get worse too.

My happy ending was getting a nasal spray to calm down the rhinitis enough to stop 99% of the nosebleeds. For once, an easy fix to a problem.

I hope Mack gets some respite from the nosebleeds.

Best wishes

After about 10 days of feeling much better, I can't get midodrine to work in a predictable way and end up feeling worse. By worse I mean the improvement disappears and I have reduced ability to stand and reduced warning that I'm about to faint. We can't work out why - if it's tolerance or a different issue. I've posted before about the cause possibly being related to interactions with other drugs, but that is now looking unlikely. I certainly think tolerance is part of the problem. Extremely frustrating.

I think it's still worth a try, though, and I found that it didn't take too long to get back to normal after stopping midodrine (can't remember exactly how long, but days rather than weeks). I still take it now and then and wonder if it might come in useful in very hot weather (of which there has been none here for a couple of years!)

I think three things contribute to the difficulty in getting a diagnosis. I'm going to oversimplify here to keep the post shortish, but it means this is going to sound harsh. I hope none of my better doctors are reading this!

1. There isn't a lot of expertise in dysautonomia. The diagnosis will probably rest with a consultant who was trained before POTS was recognised.

2. Medicine has gone too far down the box ticking route where tests are done in a certain order assuming you have the most common complaint and are not tailored to the patient.

3. Specialists are just that; they look for a diagnosis in their field and don't always link in other conditions.

From reading the boards here, I think 1. is worse in the UK than in the US, but everyone seems to complain about 2. and 3.

The solution is finding the right doctor, and I mean the right person with the right knowledge. This is the common goal of everyone here. Some people find the right person in a matter of weeks and then there are others like you (and me) where it took many years. For any other UK readers, please bear in mind that unlike some other countries, you may find the right doctor is a neurologist rather than a cardiologist - it just depends how the facilities are organised in the region you live in. To find the right person might involve researching consultants' specialities, research journals or calling an organisation like STARS to ask for a recommendation. I wouldn't rely on a GP to make the right choice.

I don't know if you are aware that NICE is reviewing the guidelines for transient loss of consciousness in adults and the committee includes some influential people in the field as well as patients who have experienced the system. I think this is a real opportunity to improve the diagnostic process and raise the profile of things like NCS, POTS etc and hope this will improve things in the future.

Some very thoughtful posts. I just wanted to add a link to an article that has brought me a great deal of comfort in its explanation of the emotional side of chronic illness, including anger. I hope it touches some of you too.

http://www.alpineguild.com/COPING%20WITH%2...%20ILLNESS.html

I don't know the scientific answer, but I do know that it takes me much longer to recover from dental work than normal. My dentist will say "it'll be recovered in X days", and it's always much longer.

I had loads of dental work done last year and it took three months to settle down. I was starting to get worried my teeth were never going to stop hurting and made a mental note not to get so much done in one go again. The good news is that they have always returned to normal in the end.

I am one of the EDS people. I think I've had dysautonomia for life, though the symptoms like fatigue didn't really hit until I was 10. This did not coincide with a growth spurt or any illness. I then had good and bad patches until the POTS fatigue/lightheadedness etc was a permanent fixture by my mid-teens. I was diagnosed a few years ago. I'm now 35. My joint problems are mild but getting worse whilst my POTS is just the same. I live a relatively normal POTS modified life.

I would echo previous comments that I am in a better state now than I was 10 years ago, but mainly because I have made some drastic changes to the way I live my life. Although it took a long time to get a diagnosis, it was becoming more and more apparent that the illness wasn't going to disappear so I had already gone through the process of managing my expectations.

The other thing worth mentioning is that as time goes on, I am diagnosed with more things. Not necessarily big things. But fixing these other problems has made such a difference to my overall health. I can't believe I'm encouraging people to get other conditions checked out when I have such a phobia of doctors and hospitals and am largely to blame for the late diagnosis!

I have not had the prognosis discussion with my doctors. There is a tacit understanding that there are no answers. My own view is that I don't think EDS is the only thing behind my POTS; there are just too many unknowns. Hormones definitely play a big part in my symptoms. I do wonder if my symptoms will get worse when I approach the menopause and then significantly improve. Someone in my family found that this happened. So I hang on to this thought and hope I can keep my relatively normal POTS life for as long as possible.

Best wishes to all

I am one of the lucky ones who is able to work. I found working full time was too much and wasn't doing me any good. I'm working 4 days a week now (and have been for some years). This seems OK as long as I don't work too much overtime.

I think there a two main reasons I can work and some others on the forum cannot. Stating the obvious, my symptoms aren't as bad as for some here. The second thing is that I've had dysautonomia for life and have naturally progressed into a job which was POTS friendly. I am well aware that even with good symptom control, there are lots of jobs that just wouldn't be possible. I have great sympathy for people in those professions who suddenly develop POTS.

At school, and long before I knew about dysautonomia, our careers adviser asked me what I wanted to do. My reply was, I'm not bothered as long as I can sit down all day and eat whenever I want. 20 years later, not a lot has changed really, except an occasional lie down is appreciated!

I'm not, but in the information I've seen (mainly for European and US trials) they were looking for patients with MSA or PAF. There is mention of syncope, but only in the context of having these disorders.

It looks very promising to me. I would certainly try it if I could!

Futurehope

I take Ibuprofen now and then for headaches etc. It does make my POTS a little bit better. Not enough to take it just for that reason. It doesn't compare with the vast improvement in symptoms that I experience at the beginning of a cold.

I don't know about the cortisol. I usually feel a bit better than usual when I'm in a stressful situation, like an exam. It's afterwards, when the stress has gone, that I feel worse.

I'm not sure how to get a link, but Carinara started the thread on 27th March 2009. You can find it easily by searching on her name (search button is in the top right of the screen). Strange phenomenon indeed!