Ianankatie

Hi I have NCS and POTS and although my HR goes up and down I have never had the syncope due to a low HR it is always due to a low BP. I also feel as though I am going to faint whenever my BP or HR jump about although often wont. I have two different types of syncope one where I feel Potsy. This is when my HR feels out of control and I often have a little faint (fall to the ground but do not loose conciousness) This usually comes when my HR has been high for me (140-160bpm) then drops suddenly to my normal rate (60-90). The other is when I feel Vasovagally (from the NCS/ Vasovagal syncope). This is when my BP drops and ususally comes 5 to 10 minutes after standing up after my HR has finished freeking out. This type of syncope causes a full black out where I loose conciousness for anything from 30 seconds to 10 minutes. So what I am trying to say is there are loads of different types of syncope and different reasons for it that all may come under the same catagory of POTS, NCS, VVS or just dysautonomias. I spent 18 months trying to figure out exactly what was going on but really it makes no difference- just do what you need to do to feel better- try everything- what is called doesnt matter!! I really hope your moniter shows up your episodes and you get sorted! Katie x

Wow- I didn't know why V-8 was making me feel so good!! It all makes sense now thanks!

Thanks everyone that is great advice!!! I am definately going to take your advice on the saline/glucose drip I am sure that would really help me although it is looking like I am going to have to have a c/section (and they want it to be under general anaethetic which I am not happy about) but I am visting my Neuro on wednesday so he can convince my midwife that I an epidural will be safe. (any advice you may have on that would be great!) As for everything else- no, your bump becoming public property isn't just a US thing!! EVERYONE here has warned me about that too!! My nan taught me to knit last year when I was stuck in bed for ages so I'll be okay on the booties (she'll have to knit anything bigger as my concentration span is nill!!). I already take my seat stick everywhere although I am worried I wont be able to resist beating people with it! I am already starting to loose my temper really easily!!! You also mentioned keeping salt intake up. I was managing really well- infact feeling better that pre-pregnancy when I was on my high salt diet but my GP (who knows nothing about dysautonomias) told me that was dangerous for the baby. I gave up my salt and have felt awful as a result. Did you continue with the salt safely during pregnancy? I am hoping that my neuro lets me go back on the salt next week. Apart from all of the above I am finding pregnancy great- even the morning/ any time of the day sickness- though I might not be saying that by this time next month! I feel honoured to be pregnant, having previously been told its not possible, and its nice to suffer morning sickness and spending all of my time on the loo not because of pots! Millions of women feel exactly the same and I actually feel semi normal for once!! Thanks again everyone- I hope you are all feeling well and I will definately keep you posted!!! Luv Katie

Hi all I wasn't sure whether which section to put this one in, I've never used the chit chat forum before so I hope you find it ok!! I am 7 weeks pregnant (early days so trying not to get too excited!) and looking for tips on how to manage pregnancy with Vasovagal Syncope and PoTS. I have visited my GP who did nothing but scare me about the risks of black outs on the baby but he doesn't really understand dysautonomias so I'm not worrying too much. I have my first antinatal appointment next week and I am also visiting my Neuro to discuss so if there is any advice that you could give me to pass on to the midwife that would be great! Anything that was good or bad for you would really help! Many thanks Katie

Hi Vanessa I have always had a steady weight until I started taking sodium in June. I am not sure if it was due to the sodium or just a coincidence but I lost 2 stone in a month and looked awful. I eat everything in sight!! I spend all of my time baking cakes etc as i find it a great seated hobby, but then I eat everything that I make- and still loose weight!! I have really concentrated on eating lots and have managed to gradually put the weight back on- but I need to eat 5 good meals per day and plenty of snacks! Can't explain it but I shouldn't complain- I know a lot of potsies put weight on. Hope it sorts itself out for you! Katie

I have never heard of this before but it seems to make sence and on paper looks as though it would work well. It will be interesting to hear from anyone who has tried it or perhaps see some research done? Thanks for posting, anything is worth a try!!!

yeah raising my head in bed worked great but after a while it stopped working so I added another pillow. I am now onto 4 large pillows, my poor husband looks like he is in a hole next to me!!! Other useful things to do- wear shoes with laces- you feel it comming on and bend to tie your laces- you don't look such a nutter!!! Also check out things on the lower shelves in supermarkets or drop your keys so you need to sit down and pick them up!! Anything to look slightly less mad!!!!

I took both Fludrocortisone and a BB for 6 months successfully before my body rejected the BB and now I remain on the Florinef. For me florinef works by increasing blood volume so that when my blood pools in my lower body there is still enough to get back up to the brain. With more blood my heart dosn't need to pump as fast to keep me up. I used the BB both for its effects on reducing my HR but also it worked as a vosoconstrictor to stop my blood pooling out into my capiliaries and keep enough to pump back up to my head. I don't know if that is any help to you but I had no negetive side effects in the first 5 months and only stopped taking the BB as it stopped working completely in the 6th month. Good luck Katie

Hi Amanda I am sorry to hear that you have been struck down with this nightmare condition too but you have definately come to the right place- there is loads of help here!! Have you taken a look at the post from a few days ago titled Florinef? Actually I think there may of been two. (maybe someone a little more IT literate than me can post you a link????) There were many questions and answers on there that may be worth a look at. Anyway I hope you find these of use- if you have any other questions please feel free to ask!! Take care Katie x

If you think it may be more like vasovagal syncope it may be worth you trying to exercises to improve your symptoms- ie hand squeezing, crossing legs when standing, moving from foot to foot, standing on your tip toes and moving up and down and squatting. All of these have helped to prevent symptoms worsening when you feel the dizziness etc coming on- worth a try!!! Also stregnthening your calves can really help- try whenever you walk up/down stairs do it on tip toes. and if you feel well try going up and down one step on tip toes for as long as you can- obviously not for too long and not too quickely if you are exercise intollerant like me! This helps keep the blood pumping so when you stand the blood doesn't pool in you legs causing the pre-syncope. I feel as though I have tried almost everything for VVS so if you need any ideas just let me know!! Good luck Katie x

hi Jacquie I just emailed you with details of my vertigo treatment. Hope this helps xx

Thanks for your advice everyone, I am really confused now!!! I don't have the coughing that is assosiated asthma and I know when I have bad attacks with my breathing it is not the same as when my husband does (he definately has asthma!) However my breathing is definately effected my exercize, after walking up the stairs I find it hard to catch my breath but I am sure that is due to my massive increase in HR. Now they have prescribed my becolmetasone diproprionate 100 2 puffs twice daily as a preventer. I hate taking more drugs, especially as it is another sterroid and I am already on fludrocortisone. This is my third day of taking it and so far my breathing is worse- has anyone experienced this before? Is it possible for it to make me worse or is it just a coinsidence? Thanks again Katie

Sorry I forgot to say, if you take them AFTER food and with lots and lots of water (minimum 70ml per tab) it goes a long way to avoiding the nausea etc

Hi Yesterday I went for a check up on my breathing and they said I had a really bad peak flow requiring asthma treatment. I did have asthma as a kid and I have been suffering quite badly with my breathing lately but not in the same way. They have told me that my florinef should of treated the asthma and the fact that I still have poor test results show I have bad asthma. This has only come on since my pots got bad so now I am wondering is it usual for us potsies to have reduced breathing peak flow or have I really got asthma. I just hate having to take more drugs!!! Thanks Katie x

Have you looked into the possibility that you could have vasovagal syncope now not pots? I started with vasovagal then developed pots so maybe you can do it in the reverse. Vasovagal Syncope is a form of Neurocardiogenic Syncope where your BP drops gradually when you stand, you suffer all similar symptoms to pots and then when your bp gets too low you faint. If your HR drops aswell then it is NCS and if it goes up it is NCS/POTS. I think anyway?!!!! It makes more sence- check out your BP on standing and when you feel symptomatic- you never know, if they get the correct diagnoses there may be a magic pil waiting there to cure all of you other symptoms. I hope so for you!! Good luck Katie x

Although a lot of people find they can not stomach the salt tabs and go back to just adding salt to their diet I was the other way around so they are definately worth a try. I was prescribed 20 tablets per day, all taken in the morning (they are massive and take ages to swallow!!) It is best to visit your doctor and request a 24 hour urinary sodium test to check your daughters currrent levels and then start with just a few and work your way up. Regular urinary screens are reccomended as in some people the salt just flushes straight back out therefore it is a waste of time/money to take them. Also be careful- I lost 1 1/2 stone in 1 month of taking sodium and I ate everything in sight!!!! Good luck Katie

I just thought that I would let you know that you are not alone- I have exactly the same feelings- horrendous cramps lasting for days and a feeling in my head like my brain is gonna pop out!!! Sometimes it lasts for as long as a week but I may not suffer again for a month or so. I find it really helps to very roughly massage my legs to stimulate the blood flow, plenty of water and my cardio geve me a few exercizes- umm don't really know how to explain it without showing you but basically if you put your legs oout straight in front of you with your feet flat against the wall, then stretch down to touch your ancles, you should feel the pull in your calves. I do this regulary to prevent cramps as well as when I feel it start. Good luck- I hope you are feeling better soon xx

Hi Vanessa I am sorry to hear you are having such a rough time of things but unfortunately it sounds really familier. Just take it easy and look forward to getting back on the Florinef!!! As for the 'fixer upper' house you in for the few minutes a week when the fatigue passes I found that painting lower bits really good both for actually getting things done but also it made me feel better about my self so not to put all of the work on my husband (not that he would mind). Now we have our jobs shared out well- I don't do much but anything that can be done with little energy whilst sitting on the floor is mine!!!! Good luck Katie x

One and a half years gives them long enough!!!

Good luck Lauren, but going somewhere as nice as hawaii has gotta be worth a day or two of feeling bad !!! (sorry, but I am from a really dull, cold rainy part of the Uk, the thought of somewhere as nice as hawaii makes me very jealous )!!! I hope all goes well for you x

Hi Jacquie I am so sorry to hear that you too have been struck down with this nightmare condition but at least you have found Dinet-from here things can only get better!!! As it 9.30pm here in the UK I am struggling to see what I am writing but I wanted to get back to you asap- I know how lonely it can be at first and I wanted to let you know that there are people here for you!! I aggree with Lauren - that it great advice about taking your family to your appointments with you! I have my husband, mum and dad all alternating between appointments. They really did not understand until then. Also, if you can, convince them to take a look at the info on the Dinet home page- it is really helpful and explains it really well! Another good source of very basic info to pass on to friends and family is on dynakids.org There is an excellent article called 'dysautonomia for dummies' and it is a really simple way of explaining whats going on. It is worth down loading and printing out to pass around. Sorry I am really bad with computors- maybe someone a little more IT literate can sort you out with a direct link? There are lots of things you can try to help with your symptoms such as movements to help the blood flow (try squeezing your fists when you feel symptoms starting or squatting to the ground- you look a nutter but if it helps!!). I am sure you will reed lots about different peoples methods here. The greatest tip I can give you is to get a seat stick- believe me, this is the greatest thing ever invented in my opinion!!! Basically it is a walking stick that turns into a stool, it is light to carry around and you can use it anywhere. Before I had this I rarely left the house. It is great for nipping to the shop- ques are no longer a problem you just sit down!! And it saves you having to sit on the floor in the street. Also, depending on how you feel about your condition, and whether or not you want to 'promote' it- I find it great to show people that I use a stick- it shows people you are actually sick - as most of is don't look it. Great for when using my disabled badge to park- people no longer look at me like a criminal!! Sorry, that is about all I can think of at the mo- I don't function too well at night! But please keep smiling , you will hear a lot of people moaning about how terrible life is with dysautonomia (and rightly so) but I am really happy with my life- yeah ok, it is not exactly what I had planned- aged 20 and stuck home all day, but really it could be worse. You will learn to adapt and although you will miss things from life before you got sick there will be a million things now even better- honest!! It is really really tough at first but you will get through it and things are good on the other side! We're only young- there will be a cure before we hit 30, although I have asked father christmas for one this year, lol,!! Good luck, if you ever need some one to talk to feel free to PM or Email me. Katie x

I have tried many different medications and am now down to just 0.25mg of Florinef. My consultant has told me that if I have to be on any of the drugs for POTS/NCS long term then this is the best as it has the least negetive effects long term. I believe you should be sure to have regular eye test as sterroids can effect your vision as well as regular blood tests looking at things such as your potassium levels. If you continue to have regular checks on these things then you shouldn't have too many problems. Good luck Katie ps. If you do manage to find any further info about the long term effects I would also be very interested to reed it!

Yay!!! Well done!!!

Wow Becky- I am not the only 20-something who knits!!!!

I have done a lot of research simply by typing what I want into a search engine- it takes time but works and that way you have access to the whole world!! For example I reacently tried typing 'sodium fludrocortisone' on google to get info about the link between the two. you get loads to look through- keeps us busy!! Good luck