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Everything posted by Louby

  1. 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
  2. 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, a
  3. Hello, I seem to recall being in there about an hour...
  4. 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,
  5. 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..)
  6. 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 d
  7. 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.
  8. 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
  9. 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,
  10. i've ticked the not sure box, as i am due to find out this week if i have EDS, as well as POTS.
  11. 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
  12. 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
  13. 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....
  14. Sue - Just a quick happy birthday - hope you do enjoy your glass of wine, please let us know how it goes
  15. 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
  16. Interesting you should say about alcohol in your system during a blood test, I am convinced my mum has POTS, (she has very similar experiences to myself, yet it does not seem so developed) she hardly touches a drop, as she just doesn't like to too much - one glass of wine on special occassions is her limit - yet once she was questioned about the amount of alcohol in her blood, following a test for glandular fever.
  17. My Sweat test was slightly different, than what Merill describes. I did go into more detail on an earlier post, but here is a snap shot. I was asked to strip down to my knickers, (I wore bikini bottoms to feel like I was having some weird beauty treatment) I was in a room that started at 30.0c - they lay you on a bed, which has blankets underneath and foil, and you are laid on top of some blotting paper, they then wrap you up like the baby Jesus with just your head sticking out. (my problem is the opposite to you, I don't seem to sweat and get very cold or very hot, yet at night time i find
  18. Hello Everyone, I myself am very particular to a glass of Sauvignon Blanc, especially new Zealand. I also quite like the odd gin and tonic I sip slowly, it takes me ages to drink a glass of wine, and I always accompany my glass of wine, with a very large glass of water - usually sparkling with ice and a slice. If I don't do the water thing with the wine (I could perhaps have a small glass without the water - but would have to have glass after or before), then my POTS symptoms go out of control, with the water and the sipping slowly, glad to report no problems. It would be interesting if the T
  19. I have now been back on my meds for a full week - I feel like a different woman. Over the last couple of weeks I have been made to sweat, drink some horrid glucose thing, exercise, had tubes put up my nose, monitors, the gadgets and gizmos have been amassing - I can now sigh a big, sigh of relief as it is finally over. I seem to remember that quite a few people had not heard of the food challenge. It involves, not eating or drinking anything other than water from 12pm the night before. Bit of a nightmare for me as I had to tackle the tube, to get the testing centre, and I missed my cup of co
  20. I shall most definetely try this, i have terrible trouble with leg aches. Guess, he didn't mention anything about droping a bit of a gin into it did he??? Thanks for the tip, i shall try this over the next week and report back. Louby
  21. Hi tearose, I'm pleased you know have your sleep study results back, I plan to request such a study from my professor. I often wake up james in the middle of the night, with jumps, long conversations and general riggling around. I also wake up shattered. I have tried a couple of things to help me with sleep, at times i can feel so tired, yet not be able to drift of to sleep - and when i do sleep I often wake up with pain in my legs, or James reports back to me of my weird conversations at 3am. I have discovered a sleep spray in Boots, which is a major chain of chemist here in the uk, I used
  22. Hello, I have started this thread, as i suggested electroylite sachets yesterday to Deb (hope that is right - serious brain fog this afternoon) in the UK these are known as dioralyte sachets, they are a form of rehydration therapy. Can anyone help out with the actuall name for the US, as i don't have a clue They work wonders for me
  23. Hello Deb, you really are at the beginning of your POTS journey, it does get easier as we learn to cope with the changing symptoms. Please believe me it does get easier to cope, I guess we become conditioned to the pains, and the up's and downs. I work a lot on my computer, and I have certain periods thought the day that are very difficult, I suffer with fatigue (my heart is always pounding away) and I have tired patches for about two hours or so in the afternoon, walking and getting some fresh air helps but when you get back to your desk you feel shattered again. I am also on florinef and hav
  24. A couple of tips I have learnt, from my Proff and on my POTS journey. 1) Pretend that you are tying your shoelaces - (I have done this in the past, then realised that I had slip on's on) 2) Flight socks or flight tights - they do help to a certain extent 3) Cross your legs, and tighten your thigh muscles - tones and stops you passing out at the same time. 4) rock on your toes and heals, for those who did ballet as a child "good toes, naughty toes" 5) Put your bag on the floor and rummage around it, cursing "I know my ** is/are in here somewhere" you can add the most appropriate product dependi
  25. Hi Mighty, out of interest what is considered a significant amount of time for taking steriods? Thanks Louby
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