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Everything posted by Csmith3

  1. 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 anyon
  2. 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 t
  3. 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 a
  4. 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 giv
  5. 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 diagn
  6. 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
  7. 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
  8. 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 pr
  9. 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 whethe
  10. 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 fami
  11. 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.
  12. 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 countr
  13. 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 m
  14. KarenW, Gwen Great stories, really made me smile - thanks so much for sharing. Cath
  15. 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 th
  16. 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
  17. 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
  18. 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
  19. 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
  20. 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.
  21. 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 hav
  22. 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 woul
  23. 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!
  24. 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.
  25. 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!
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