Louby

Hi All, Isn't it funny how when you need things the most.... they seem to find you! I have been struggling with something completely un-related to POTS (well maybe it is related in some weird way), and today for no reason I get a notice in my inbox to access the DINET forums as someone has posted me a message. The message was about my poll on "causes", and was sent to me yesterday. I've never received notification before yet people have contacted me via my inbox... I was desperate when I posted these polls to try and research what was going on in my body, and why I was experiencing all these difficult problems, why was it happening to me. I had forgotten how much i needed this forum to help me feel better within myself L

I second that it feels like you have had five glasses of wine, but without the enjoyment of the relaxing feeling that comes with the first two, but with immediate full "drunk effects" It becomes difficult to concentrate, your words slurrhh, you go more wobblely than usual on your feet. Things become "foggey" it's like everything is happening somewhere else, and your just being dragged along. You get all jumbled say things back to front and generally get all in a pickle. My brain actually hurts, and it's like your trapped in another world. Mine is happening for longer each day at the moment, and nothing stops it. It goes as quickly as it starts. It's most definitely not pleasant and i've been told how lucky i am, i pointed out the fact that it was all the pain without the enjoyment. Good luck everyone...

Hello, I seem to recall being in there about an hour...

Danabob - please try not to cry, but if you want to, try and let it all out and then take a big breath and be really brave. Remember we are all part of little POTS world, we are a little POTS family... Most of the time we can laugh in the face of adversity - somehow together we can cope, pulling each other through in most horrid of circumstances. Sometime we don't do so well (everyone has their weak moments of tears - mine last night lasted about an hour) but in the main, together we are so strong. My brain fog really has reached a point of "madness" this week, today has been better though, I'm now just trying to think what I did differently, but can't think of a thing (maybe it's kicked back in ). I love the shaving of the legs story, it seems horrid right now for you because it is so fresh, but in a couple of days you will laugh - I promise I have been trying to remember to shave mine all week - every time if get out of the shower "DOH" they are now REALLY HAIRY, so at least you have at least one good leg. I often forget things, I'm a big list writer, everything goes in a list. I have thought about writing a definitive list of the things I need to do every morning. If I am the last to leave the house, it takes me about 20minutes to leave the house, checking doors, windows, plug sockets, fridge doors, hair dryer hair tongs - I'm sure you have all been here before. Then there is "do I have my keys, phone, wallet, car keys. etc etc " So many time I have got to the bottom of the road, only have to run back. The only thing I don't check is my trousers or skirt - the day I have to check these then I think I will worry Keep smiling it will get better :) :) :) :)

I've heard of origins, if anything ever goes wrong with my brand (I have in the past suddenly had to change products - hope not as i love the clarins) I shall maybe give origins a try Another tip if your skin can cope is fake tan - works wonders! (Again clarins do a range, but i'm not sure if this would be perfumed..)

Hello, Here is the UK it's not compulsory but highly recommended that all young people attending uni etc take the vaccine - I never took the vaccine as it was not recommended prior to my leaving university. I believe you are at greater risk up until the age of 24/25. This is an absolutely terrible illness, and is often fatal if not caught quick enough - it is very hard to detect in the early stages. Symptoms start with flu like symptoms, and a rash that when pressure is applied does not disappear (perfect way to check is with a glass) amoungst other things You should discuss this with your doctor, I had a friend who caught this whilst she was in high school, she was incredibly lucky to survive. She was in hospital for a very long time. Usually you have to be in contact with the person for over 6 hours (I think) before being at risk. Good luck Lou

I also am incredibly pale, and do sometimes suffer with the dark circles. Little make up tip... To hide them, try Clarins version of toutche(sp) Eclait, it covers better than the Yves St Lauren (sp) one and it has light reflecting pigments - otherwise use your usual foundation, tissue, re-apply and then put on powder. Clarins also do a great eye gel, which really works well. Clarins products are all natural, and they have yet to cause me any problems with allergies etc.

Hello, I'm a sales/ major accounts manager within the telecommunications industry, specialising in satellite telecommunications. (this really is not as interesting as it sounds ) It is really interesting is to see the varied professions that we work within. Take care everyone Louby

Hello, I am struggling really badly with the whole brain fog thing today It is driving me mad, it is like I am looking down on myself, controlling the actions and movements like a puppeteer or that I am so deep inside myself that I am screaming to be let out. The only other way I can describe it is that I feel completely drunk, my words slurrh and I make no sense what so ever. I just wondered what we can do in times of bad brain fog, mine is getting worse and worse just lately. I am suffering with periods of about 4 hours in the afternoon where I am completely useless. I usual drink coffee, or take salt in diet coke, drink tons of water, I've tried eating bananas - for energy and the potassium. This brain fog things, is now happening every day, and I just want rid of it. Every day the brain fog is worse before lunch (which is similar to an experience I note from the thread - updating on Carla) I don't eat in the mornings as I just can't face food, at lunch I have something small (whether I am hungry or not - if I don't eat anything, come 2pm I am vanished, then when I eat the brain fog is worse) it takes about an hour to recover from eating, the brain fog eases off but then gets worse again. By about 4pm, it suddenly clears - I will be just plodding along and bang it's gone. I have started drinking coffee, which at times helps at others makes me jittery. This last weekend I have spent sleeping, not getting up until 11am, and then going back to bed for 3-4hours in the afternoon. Anyone else have any ideas.....

i've ticked the not sure box, as i am due to find out this week if i have EDS, as well as POTS.

Bless your cotton socks I saw your thread, and was so hoping things went well and to see what happened - i am so delighted that your birthday went well for you, and taht you enjoyed every second... I woud love some cheesecake right now So delighted you had such a lovely birthday - keep smilling, I think that just hearing your story that a lot of people may have a little bit of extra hope inside them today. louby x

Hello Everyone The idea that there is something out there that may stop my brain fog is heaven. I have been suffering very badly with it, and it is lasting for longer periods of time. I plan to do some research a little later this afternoon. I try to remain as strong as I can, but I am fed up with being limited in so much of what I do. I plan to ask for a 48 hour heart monitor/BP to be done whilst I am on my medication, to see what I am going through in my daily life - to see if I can work out the triggers for the brain fog. When I have had the monitors in the past I have been off meds, and asked to carry out controlled tests to see the effect. As I was off my meds, I was at home and resting. Maybe I should invest in my own monitor, I am starting to realise that whilst my professor is good, he doesn't understand what it's like to feel exhausted, to feel your heart leap out of your chest, not to be able to stand up right etc.... Sorry I completely hijacked this discussion, into a general moan - just had a realisation moment last night

I am really interested in this as well, I take just florinef, I'm off to see my proffesor in about a month, and i am going to ask him about this. what kind of medication is this?? My brain fog is terrible at the moment, it has been geting worse over the last couple of months (i have also been diagnosed for about two years) I wonder if as we become more "used" to the symptoms and down days that we end up pushing ourseleves harder and this contributes to the increase in brain fog, as without realising it we are exhasuted, with all those extra heart beats....

Sue - Just a quick happy birthday - hope you do enjoy your glass of wine, please let us know how it goes

You poor thing, that is must be awful. I take florinef only, (yes it is a steriod), and have not had any problems with weight gain, sometimes the opposite. I don't know what to suggest, woudl it be possible for you to bring your appointment forward, or call/e-mail him??? The very best of luck with everything