Louby

I still have nightmares about the tilt tests, I'm going back on the table in a couple of weeks. Not for the full test, but a part tilt (just as bad in my opinon) They only had part tilted the table and I started to go, by full tilt i was like a jelly. I had no idea what was happening to me, and was absolutely terrified - but it was thanks to this test, and the doctor who was doing it, that I discovered I had POTS. I couldn't remember where I was and how I had got there for ages, I couldn't even remember how to get back to my boyfriend who was outside waiting for me. the nurse was fabulous and took so much time to make sure I was ok. I remember the doctor saying that he had never seen BP so low, and that I had POTS - I remember this ages later, and we just laughed as how could there be an illness called POTS. I then had a nightmare, as the results were not sent to my then neurologist, for my next visit - they arrived the next day. when i saw him he sent me on my way and told me i would get better, that i was just stressed (if i was a bloke this would never have happened) at this point i was very sick. Lucky for me the doctor who did the test really came through for me, he returned my calls and got those results through, talked through meds etc with me, and gave me some great advise.

Hello, we seem to be researching along the same lines.... there is a news letter in Pots place which talks about EDS http://potsplace.com/newsletter.htm May be useful. LJ

I'm curling up with a good book and my handbook tomorrow! I find it so interesting, all these things keep cropping up, you spend your whole life time thinking half of them are normal or un-related, and then it turns out they are just another symptom. I'm so glad you found the handbook link.

Hi Denabob, if you go to - http://www.ndrf.org/NDRFHandbook.htm you can access the handbook, it's a PDF - quite lengthly files, but really worth it. I did not need to complete any approval processes to gain access to the handbook. Good luck !

Hello Tim, yes I have similar problems, with stiffness and pains in my arms and legs - sometimes it is impossible to walk, I drop pens, mugs etc. When I was younger my GP (guess like your internists) was convinced I had arthritis - it was disproved. The pain varies, but I do find when extremely dehydrated the pain is particular bad. I am extremely hypo-extensive, and have a great deal of clicking in all my joints and my jaw... not sure if this is related. Another thing that happens is my hands and feet turn into claws, and seize. My professor seemed to be interested in this, for me it was just normal... it's funny I hardly seem to know what is normal and what isn't anymore. I am very lucky that my neurologist has teamed up with a rheumatologist in their quest for information on POTS. I am seeing him mid April, I shall let you know how this goes, and what he suggests - it may be helpful. There was a thread a little while ago, that was talking along the same lines as this - I can't remember which one it was but maybe you can find some extra info there??

Hi Everyone, It may be that we would need to run a poll which was more detailed on each of the sections, it would be great to think that we could make a difference somehow... I was limited to 10 choices, and my experience of possible causes is limited to my own personal experiences and from what I have read on the recent boards. Mighty-Mouse, your an expert in these things, any suggestions or ideas?? I hope to discuss this with my proffesor, who is always comming up with new questionnaires, would we be able to publish these somehow - to try and help with his research, and find out a bit more?? Denabob - you certainly have been through the wars! I agree with you, i think the more info we have the better! Not sure if you have found it yet, but the NDRF have a handbook and it is full of very useful information - I am just starting to wade my way through it.

Hello All, Based on Denabob's excellent suggestion that we may be able to associate some of the reason behind POTS, I have come up with a small poll. (i am slowly realizing that we are the experts!) My knowledge is limited when it comes to the certain types of illness that can result in POTS, so I have just listed Illness. reading through the boards as enable me to come up with some of the other suggestions. SO of S = sudden onset of symptoms ( I felt this should be divided into four categories, as we may find that looking back you discover things that went un-detected, and if so / or if not it is interesting to try and establish a genetic connection.) Depending how this goes, we should maybe also try to establish connections between skin colour, lots of us seem to be fair skinned. I know my professor has proven a link between hypo-extensive (double jointed ness) and he was looking at a blood fear link. I have also added in trauma, as i had heard this may also be a contributing factor. It would also be interesting to try and complete further research into how gender relates to the development of POTS. these are just ideas... I'm sure we should try and research further into pregancy, and genetics etc... but i thought this would be a start...

Noooo I'm so disapointed i cannot access from work - firewalls make me so mad - shall have to wait until i get home :(

Thanks Just-me, we know Acetaminophen as Paracetamol in the UK. This is really interesting, I suffer with terrible headaches, and always used to take ibuprofen or aspirin. I was recommended to avoid ibuprofen, and especially Aspirin as this thins the blood (Ibuprofen is not recommended for asthmatics as it can make them symptomatic) so I took the decision to revert back to Paracetamol, but it never seemed to take the edge of the headaches, so as I never experienced any problems with ibuprofen I reverted back to it (I would not take aspirin though, if this drug was found now it would never be approved for public use in the UK). I can't say I remember any side effects with Acetaminophen/Paracetamol, but who knows - I do seem to remember it making me sleepy but thought this was associated with the headaches. Over the weekend if I suffer from a headache I shall take Paracetamol in the interests of science... I'm also spending the weekend with my in-laws, and if it makes me sleepy this may be quite a bonus. ( I love them really) It may also be worth noting, that many brand name medications contain caffine, it's a fairly small dose (usually about the same as in a can of full fat coke) - the generic varieties usuallly don't contain caffine but just the drug - I'm unsure if this may affect headaches or problems in certain people??

Thank you so much Dan, I have placed in my favourites and will have a dabble when my boss dispears for half an hour !

Hi Dan, just read the latest threads, I've been away for a couple of days so haven't checked the boards for a little while, and only just had the chance to read through all of your story. I have also just discovered about the guinea pig award, and feel terrible for writing that i felt like a guinea pig this morning - this is a long term joke between my family and I. I truly see you as the ultimate in Guinea Pigs - maybe you could take the Golden Guinea Pig award! If you should take Tearose up on her offer and need a picture of a guinea pig, i have a rather tubby one at home, who woudl be the perfect model. You seem to have amasing strength and determination, I certainly feel I can learn a great deal from you. I would also love to know more about this toad games business ???? Sorry for the rambling on, i'm in my fuzzy head stage of the day I wish you lots of hugs and positive thoughts

Hi Jessica, Lots of love to you - and if you thouht your post was lengthly, try this one. firstly don't apologise for venting your anger, we are all here to offer support and be supported from time to time, the help I received when in my POTS hole recently was fantastic, just to know other people are out there who understand is a help in itself. (topic title - I'm having a bad time) could your mum stay on for a couple of days? If she can't try your hardest not to panic, as this will make it worse. I have no idea how the health care works in the US, so I can't make any suggestions on this front, I hope someone else will make some suggestions. Taking generic florinef, should have no affect - the drug should be identical, usually the difference is an additive, or a coating etc. Try not to be cross with yourself for the things that you cannot do, try and focus on the things you can do - set yourself small challenges that our achievable, so you start thinking more positively. It doesn't matter if you need help today to get in the shower, it doesn't matter if you can't drive - you have achieved logging onto your computer to send an e-mail and read the messages we write back to you - so you have achieved something Keep telling yourself it is ok. Today is today, tomorrow is another day. Try when you feel light headed, to lie down on the floor with your feet elevated, I find this helps - it brings the blood back to your brain and your heart. My boyfriend is very supportive, but still doesn't quite understand - he is new to this too, although it has been two years, he doesn't understand what it's like in my body, and sometimes he gets cross, not with me, but because he is frustrated and doesn't know how to help me. The handbook on the NDRF is fabulous and has a section for caregivers - try to make him read it, i have found since my partner has read some of the info I have printed out ( I haven't given him the address of the board, this is my place!) he has started to understand my POTS body more, it takes time, but tell him exactly how you feel - I kept my problems a secret for too long. So here's some tips, from what everyone told me... 1) Be Positive 2) Listen to your body, it knows best 3) Rest - with a big comfortable fluffy pillow (my tip lavender oil!) 4) Drink LOTS 5) Eat when you can (take advantage of being able to tuck into a huge pizza... if you fancy ) 6) Try not to panic 7) Electrolyte drinks & plenty of salt 8) Panty Hose 9) Set yourself small achievable targets 10) Don't be cross with yourself, and no we are all here to support you, keep trying what usually works, and believe that it will - believe me that it will get better. feel free to e-mail me, be brave - BIG hugs xx

I've never been told why this happened... I have been told they don't at the moment really understand enough about POTS to determine where it comes from. What i have read and heard, has led me to believe some people find it happens after illness, others can never put their fingers on exactly when it started so it is impossible to contribute a cause. One possible reason I was given, was that it is genetic, passed from mother to daughter. I have spoken with the women within my family, and they certainly seem to have a lot of similar symptoms. My professor is very interested in exploring this possible route, and is hoping to look into the other ladies within my family. Perhaps the most interesting link is that between my mother and her older sister, they have both had similar experiences throughout their life times. Both have very low blood pressure, and during pregnancy both had many POTS like symptoms, both have been fine ever since - although my mother of late has been suffering with so many POTS like symptoms it does very much concern me (she is now 53). My cousin, has had similar problems to me, thankful not as severe. She was told, by pure confidence to avoid all the things people with POTS should avoid - lucky for her she is now fine, and reports no problems, maybe she doesn't have POTS but is certainly sounds similar.

Hello Everyone, I feel like a guinea pig... I have my next set of test details through, and shall be off for them early April, so few centres here that I have to wait for ages Autonomic function tests Plasma noradrenaline, adrenaline and dopamine levels pre and post gravitational stress 24 hour blood pressure/heart rate test and now for the new ones...... Liquid food challenge test Modified exercise study Thermoregulatory sweat test - I'm guessing this is the disposable underwear and orange powder paint test (yuck!) Does anyone have any ideas on the food and exercise challenge?? (i guess the challenge bit is to make it seem like fun....) I also have to go and see a new rheumatology professor, to discuss the clamping in my hands and feet, and he is likely to send me for more tests... Anyway generally speaking, after a rough couple of weeks I feel much better today

Hello, Sorry everyone, I'm guessing Tylenol is a brand name, any ideas what the actual drug is? Thank you

Hello, A similar thing has happened to me, over the past couple of months I have noticed a change in my symptoms, inappropriate sweating especially at night is one thing, and feeling incredibly hot and flushed during the day (but with no sweating) during the day, as well as going the exact opposite. I'm 26, and as with Michelle, in my case I'm also fairly sure that this is related to problems with my sympathetic nervous system - the best way to describe it is that my internal thermostat needs mending. I've been recommended to go for a sweat test by my professor, it's definitely worth discussing any change no matter how small to your Doctor - I've started to keep a diary of everything, so that I can show to my professor next time - in case I'm passing anything of as normal that might actually be related, to the condition. Wish you the best of luck!

MM - I love your story, i have had similar situations in hospital.... I agree the best way to handle this illness is with Laughter, although at times this can be incredibly difficult. I have a top five of places I have suffered Syncope, or funny situations with POTS 1) Amsterdam 2) A very posh restaurant, with a glass of champagne in hand 3) The coffee machine at work 4) The shower 5) Hospital All of which can be told with a sense of humour, when I look back at them. I'll tell you about Amsterdam, I am always torn between 1 and 2. I'm still quite embarrassed by the restaurant, (happened a couple of month ago, and invoved getting champagne in my hair) I will include this when I write my story, which I am working on as a form of therapy. The situation in Amsterdam took place almost two years ago, at this point I had not been fully diagnosed. Lucky for me I was with my then boss, who was fabulous, and two close friends - they all knew of the problems I had been facing and were all very concerned for my health, they had already experienced several episodes of me passing out in odd places. So we were walking along by the river, and happened to be standing outside the most popular "coffee shop" in Amsterdam, trying to decide what to do next. I remember starting to feel incredibly thirsty and sick, and mentioning it to my colleague who at this point I could hardly hear or see. (it always amasses me quite how clam I remain.) I remember him looking at me rather strangley and in response saying "are you ok,,," "yes I'm fine, I just don't feel too well right now" apparently I said this with pure conviction. The next thing I know, my colleagues face went a lighter shade of pale and suggested I sit down, I took one look at him " I think I shall lie down" Promptly my legs, like jelly by this point had disappeared, and my head was crashing down towards the cold stone floor. I have no recollection of this but this is apparently what happened... My boss, decided that I really shouldn't hit my head on the floor, and he felt the most appropriate action in this case was to adopt a David Beckham style, by turning round to face me, and to treat my head like a football, he caught my head with his foot. My other colleague caught my sunglasses, whilst the other caught my bag... Then I seemed to attract every human being in a ten mile radius, most of whom decided I must have been in the grasshopper and was just another tourist who had taken advantage of the more relaxed local laws.... Camera flashes proceeded My female friend, tried to place me in the recovery position. several people then decided to call ambulances, and the owner of the grasshopper appeared with a glass of pink fluid, which had about 10 spoonfuls of sugar... I then started to come round, with no idea of what the heck had just happened, a mad panic surrounded me, I was freezing cold, felt sick and so confused yet still managed to mumble "where are my sunglasses, I had them in my hand" My boss and friends were brilliant, they refused the pink liquid, and gave me water only. Once i felt better they calmly moved me away from all the commotion - it was so embarrassing... not to mention so frightening My colleagues were fantastic, they didn't moan about the change in plans, we spent the entire trip in the lounge of the hotel, talking and drinking water - they were so sweet and they made me laugh. We often still joke about the different places I have passed out, and about getting little plaques - LJ passed out here. Unfortunately things have changed within my company, the people have changed, once I was diagnosed they seemed to think I would be cured - I have to hide my condition and pretended I'm ok, I had forgotten how supportive the people I used to work with were.

Dear Roelse, I really feel for you, it must be an incrediably difficult time for you and your partner. I had heard people talking about the NRDF on this forum, and found the site this morning. They have a handbook and some other interesting info, so perhaps you will find something there that can guide you through your difficult time. (www.ndrf.org) There are a couple of other ladies on this site, who have children and I am sure they will write to you with their own individual stories and advice. Since i joined, i have found this forum a great source of comfort, and i am sure you will do too. One of the best pieces of advise i had when first joining was from Tearose, and that was to find some time to read through all the historic posts. Wishing you all the very best of luck, and please keep us updated. L

I absolutley understand, how your wife feels with regards to drawing attention to the condition. The great thing with oils, is that on-one needs to know what it is for, it could just be a "nice smell" The other things to try are burners, this way she would gain benefit from the scent without the risk of an allergic reaction. Or I sometimes place a couple of drops on a cotton wool ball, and pop on my radiator. I really wish you the best of luck for your journey tomorrow, it must be very danting for both you and your wife I look forward to hearing how you get on with the hunt for the oils. Most supermarkets and Chemists here sell aromatherapy oils, I'm sure it will be the same where you are. Look after yourself.

Isn't peppermint tea and peppermint oil just the most simple yet amazing thing for nausea. I've done a great deal of independent research with essential oils. Whilst I was at Uni, I used to work as a dispensing technician, and specialised in essential oils, went on a few courses and just read loads, completely un-related to what I do now, but it has become a bit of a hobby - I've not looked at my books for quite a while, I can't wait to get home and start looking through. Justme - your wife is so lucky to have you, I too have a fabulous partner who has been given stacks of print outs to read this week, from the forums as he is keen to understand more about this condition. It means so much to know you have someone else in your life, who is prepared to try and understand. I'm sure aromatherapy massage would do wonders for your wife, but see a proper aroma therapist. Once you have sought medical advise perhaps you could learn how to do basic massage yourself, you can make up your blends of non-stimulating oils, using a suitable base oil (almond oil is wonderful) with a couple of drops of something like lavender. There are loads of books on what to do, and what not to do. Even just rubbing the oil in gently to the skin can help, and it smells wonderful so instantly aids relaxation. (I am more than happy to look into this for you in a bit more detail if you would like??) If anyone does decided to dabble, and it is great fun to learn about how oils can benefit you, please be careful with certain oils, such a clary sage as these have stimulating effects, and they are really not good for people like us. One oil that is so versatile and fabulous for relaxation, when having ones of those days or to help calm you down is Lavender oil. Roman Chamomile is fantastic for headaches, and other pains - they don't always works, but they do help. Lavender oil, is great used in the bath or shower, I am using it constantly at the moment to help with sleep, believe me it works wonders. Sorry completely went of on a tangent, but I love the oil thing....

I'm pleased your insurance covered them! I hope they have given me the right price... When it comes to medication and things like this, I am so lucky. I have insurance to see my speciallist, which is great otherwise I would still be waiting two years on. But all my medication is covered via my doctor (which is a free service) and then I just have to pay ?5, reagrdless of the actual cost of the drug. We are very luck to have a national health service.

Hello! I have been thinking of purchasing a heart rate monitor, but was not sure which type to purchase, I was concerned with spending money on one which was not up to scratch Would you be able to post the model type? Very much appreciated Louby PS - with all my new found gadgets & preparations, I am going to have to invest in a bigger handbag (any excuse)

Hello Tearose! Unfortunately in the UK, most chemists don't stock the panty-hose, but they are available on order. I have ordered my panty hose, from the chemist and can't wait to get them. (seem to remember i went for honey coloured, although not sure now if i should have gone for black) Whilst expensive ?12 (about US$21.84 by the current exchange rate) they are cheaper than I had thought, about the same price as my flight socks, and if they work - it's so worth it. Thank you so much for all the advise over the past week, it has been greatly apreciated, and made me feel so much stronger, it's just so nice to know we are not alone. Take care of yourself. L

Hello Everyone, today is better. I have incredibly low blood pressure, so not sure if a beta blocker is the thing for me. I am actually awaiting a long list of new tests, due to the change in my symptoms - my doctor has also told me there are new medications that may be suitable, I just need to hang in until the tests are completed. Thank you for all your well wishes, advise and support Louby PS - tried the electroylte sachets, these work a treat!!

Hi Dawn, Yes sometimes I do have difficulty breathing, at the moment I am out of breath a lot, but I think this is due to being incredibly symptomatic at the moment. Which may explain the increase in "claw like" symptoms. I plan to keep a lifestyle and symptom diary, I have just spent a week in a pots hole, and whilst things are getting better I'm still not right, as such I'm hoping my diary will be able to establish connections that maybe I have not considered before. I shall keep an eye out for this one - thank you!