Ianankatie

Hopefully you are seeing some improvement with the timolol now but if not have you considered doing a little research yourself and taking the articles to your daughters consultant. The first consultant I saw for my NCS hadn't treated many patients with it before and was running on trial and error. I did some research into trials that had been conducted and then we slowely went through the list until we found something that worked. This can be really frustrating as often you feel worse before you start to feel any better but it is definately worth it. You will find lists of medications on the dinet web site and I also have quite alot of information that I used to take to my consultant. It is all copied off the web so I don't think I can post it on here (its a bit dodgy!) but if you would like to take a look through I would be happy to email it to you. Has your daughter had a 24 hour urinary test to check out her sodium levels? Did she try any non-pharmacutical (sp) methods (foods, fluids, manouvers etc) prior to starting on the meds? The reason I ask is I know of several people who tried lots of different meds and then when they had there sodium levels tested it was clear that all they needed was salt tablets. People with NCS require a much higher level of sodium in there body than those without. It is always worth trying the 'nicer' drugs/supliments before going on to the big boys! Especially when young! Good luck, I will be thinking of you both Katie

Hi India I have been trying to get hold of that research article but can't get access as you have to be a doctor to get on the site. The guys name is 'Hainsworth' I'll keep trying but maybe you will have more luck finding it than me.

Wow Nina that is amazing you really are an inspiration to us all! May I wish you the best of luck throughout your training and on the big day! I will definately be thinking of you!!

Hi Pamela I have asthma and was told that Propranolol was okay for asthma sufferers where most other betablockers were not. Also it is short acting- you have to take it 3 times daily which is a bit of a pain but if you get an infection or your asthma plays up you can come off it within 12 hours. Good luck, hope feel better quickely Katie

Hi India I have just emailed my doc to try to get that report. I'll let you know when I get it. Good luck Katie

Hi Ben Computors really are not my strong point. I think I have just copied a link to the topic on the NDRF (I hope its okay for me to do that). http://216.149.163.247/ubb/Forum1/HTML/006300.html If that doesn't work the topic is called 'POTS, any breathing problems?' You may find it easier to bring it up by going on the search and searching under topics by my user name 'ianankatie'. I think it is near the bottom of the list. Another good search is just to look up oxygen. Hope that works!! Katie ps- Good luck tomorrow with Prof Mathias!!

Hi Jenifer Feeling anxious is completely normal- looks like we have all been trough it at some point! There are loads of great tips of how to cope with the journey on here, you'll be fine. Remember there are alot of us who don't have good doctors around- I have suffered for several years and only been to hospital after an attack once-touch wood! I never bother to go as the doctors are so useless round here they don't know what to do with me anyway. It is scary but every time I have an attack I just work through it with me husband. You are much safer with your family than you are with most doctors!!! If you explain it well to them and tell them what to do when you feel it comming on believe me they will be much better for you than a doc who hasn't a clue and won't listen to what you have to say anyway!! Good luck Katie

I am so sorry you are feeling so bad. I know how difficult it is to cope and adapt when you are so young. Unfortunately I don't really have any great advise for you but I just wanted to let you know that you are not alone and I really hope that things begin to improve soon. I also suffer with breathing difficulties though not as bad as you. Have you looked into having oxygen at home? Many people have found that it really helps. There is a topic on the NDFR about breathing troubles related to POTS and things that can help. It is worth checking that out. I have also used salbutamol (asthma treatment) in the past to open up my airways and help me breath. I am going to see a doctor about this on Monday so I will let you know if they have anything else that may help. Good luck, keep smiling, things will get better. Katie

I find cooking is great. I have set my kitchen up with everything to hand and I have a stool to sit on. I make sure everyday there is a nice meal ready for when my husband gets home and find it really helps me having something that I can do to contribute to the home as I obviously can't go out and work to bring in the money. I also do a lot of baking- I don't think I have bought anyone a birthday/wedding/anniversary/congratulations or any other sort of present in a year or more! Everyone gets cakes!!!! (also good when your a bit short of money due to benefits!) Similar to yourself I try to keep myself busy online and help my friend to market her art business. I have my pets to 'run' around after (dog and cat) and my nan has taught me to knit (sounds abit strange for a 20 year old but it is a great seated hobby). I am currently knitting a scalf!!! Another thing that I find really rewarding is helping out with online charities to build awareness of our conditions and others similar. Being in the UK there is very little to inform people of dysautonomia and I have been working with other support groups to add in info about POTS and NCS. Good luck, I really hope you find something that works for you soon! Katie

Thanks for the tip about the wheelchair Gena, thats such a good idea!

Hi I have been taking florinef for a year now and having tried most other drugs available found that it is the only drug that works for me. I now take 0.2mg daily but have taken as much as 0.3mg. 0.3 caused me to suffer side effects of headaches and nausea so I had to go back down so 0.2 isn't quite enough to control my syptoms but it does help and it is as much as I can take. One bit of advice I can give is as you increase look after your stomach. It made mine really bad and I never suffer stomach problems. The best thing I found to do is break your dose down to 3 times daily and only take after food. As for the link between salt and florinef you MUST increase your salt as you increase your Florinef. I believe (though my memory is not great and I am no doctor) that florinef is used to flood your capiliaries with fluid so that when your blood vessles diolate and usually your BP would drop you have extra blood there to fill the gaps so there is still enough blood to make it up to your vital organs and keep you up. If you don't have enough sodium then the fludrocortisone has nothing to 'cling' on to to pad out your blood and the extra fluid you take on will just come straight back out again having done nothing for you. There was a clinical trial conducted in the UK earlier this year (sorry I cant remember the name of the guy but I will try to find it for you). He tested the effects of florinef, florinef + sodium and sodium alone. The study concluded that florinef was unsuccesful unless combined with sodium and it was found that the most succesful combination was 0.2mg Florinef with 6g sodium chloride though you could go as far as 0.3mg florinef with 12g sodium choride (thats 20 sodium tablets a day!!!). My cardio only found this research a few months ago and since then he has managed to get nearly all of his patients off the BBs, vasoconstrictors etc and just on to the sodium! Another succesful combination for many (though not me) is Fludrocortisone with a vasoconstrictor. Another thing to bare in mind is that Florinef is a much 'nicer' drug than many as it has been succesfully used for many years and has had lots of research done on its effects, unlike midodrine for example which is often perscribed as an alternative and hasn't really been researched properly-no one knows the long term effects. As I say this is all in my opinion, I couldn't find the original research article and my memory isn't great so check it out properly before doing anything!! Hope this helps Good luck Katie

Hi Gena I am sorry to hear you are suffering at night. I too suffer horrible syptoms at night and in my opinion this is the worst part of POTS and NCS. My BP also does strange things at night- sometimes high, sometimes low, as well as my HR that generally is low low low when lay down and really high when standing. Because of this I suffer chest pain, extreem sweats (I wake up looking like I have just got out of the bath) and I find it really difficult to get up. For me what helps is drinking plenty of fluids, but at the same time this also makes things sooooo much worse. Drinking water helps initially but then of course what goes in must come out!!! Some nights I need to go to the loo 5 or 6 times. This is a big problem as I can't stand up after being lay down for that long- I stand up, I black out!! So I have to crawl to the bathroom and have to wake my husband up everytime to take me. I have constant brooses from where I fall trying to make it on my own!! So I am really sorry I don't have too much advice there. I really don't know whats best. Just make sure you have a safe rout to the bathroom!! I tried compression hose that DID help but my doctors told me NOT to wear them in bed as they can cause problems. I also suffer bad cramps in my legs because of all thats going on so I find it helps to pile up cushions up under my legs to get the blood flowing again. SOrry I can't help more, hope you feel better soon. Katie x

I suffered migranes for years but when I was diagnosed with NCS my cardio told me that I had never had a migrane, every episode that I had thought was a migrane (and been treated for by other doctors as migranes for years) was actually an episode of pre syncope. I don't know what to believe but I know that I can't take migraleave anymore (UK migrane treatment) so I suppose it doesn't really matter what they are called we just have to work through them!!! What ever it is I can completely sympethise with you- its horrible- I hope you are feeling better really quickely!! Best wishes Katie x

I find that too much caffine sends me bad but I still manage weak tea (I couldnt give up completely) and reacently I think I have been having trouble with my blood sugar as I get sick if I dont eat regulary and then if what I do eat is sweet I get bad. Sweets have also started to make me bad. I have found one thing that really really helps the nausea etc. I make up a fresh ginger and lemon drink by chopping up about 2 inches of fresh ginger root and mixing with the juice of 1 lemon and 1 tablespoon of sugar. I then add whats left of the lemon I squoze and top it up with 1/4 pt of boiling water. I leave that to infuse for 15 minutes then serve it 1 part juice mix with 2 parts boiling water. It stays good for several days and is good cold too. The ginger is great for nausea but the lemon balances it well- like traditional english lemonade! My husband drinks it too- he says its quite nice! Hope this helps Katie

Thanks everyone! What ever is wrong with me the tablets I got yesterday are amazing! I have been up and about today without too much dizziness etc and I am even managing to puppysit for my mums 8 week old pup- not an easy task for someone suffering major room spin! I think the main reason they put my syptoms down to vertigo is the ear to ear sensation I keep getting and the effects on my vision- as well as the room spin and nausea when lay down! I have rang my cardio to get checked out properly and had blood tests done today so hopefully things will work out well. For anybody who has had a sudden onset of vertigo- did it get better???? Thanks again! Katie x

Thanks, that is such a good way to discribe it- just lilke sea sickness. I have just been looking through potential causes of vertigo online and read about the 'rocks' as you were saying but also that vertigo can be caused by poor circulation and lack of blood to that part of your head- surely this would make sence as it came on after a bad black out where my brain was lacking blood. Does anyone know anything about this???

I have just got back from the doctors where I was discussing my new nutty symptoms and they recon that I have vertigo as well as VVS and POTS. They think that it has something to do with the bad black out I had at the weekend where I was drifting in and out of conciousness for sometime. Since then I have had funny feelings in my head and have been feeling faint when lay down as well as standing up. The doctor that I saw wasn't my usual and admitted she didn't really understand dysautonomia. She has suggested I check out potential links between POTS, VVS and Vertigo so if anyone has any input that would be great! For now I have been perscribed Prochlorperazine Maleate to calm the nausea etc so I'll keep my fingers crossed for that. I'm off for more bloods tomorrow too. Thanks all- hope your well Katie x

Well done Becky you are doing brill! I'll be thinking of you tomorrow! Good luck xx

First of all- thank you everyone for getting back to me so quickely. You are all a great help! Ben- good luck this week- I'll be thinking of you- let me know how you get on! I have just been doing a quick bit of research into the IV stuff and think it may be worth a try- well anything is worth a try, I'd cut my right arm off if I thought it would help!!! I am just not really sure how it helps? My BP isn't too extreem- which is one reason why I have been worried- I don't feel typically 'vasovagally' although it does drop when I stand. My HR is sticking quite high- normally it settles when I lay down but again it isn't really too high. I am nevous of drinking too much as I damaged my kidneys earlier this year drinking lots of water as advised by my cardio. Water does help my symptoms though. I know you are not doctors but based on your personal experience do you think IVs could help my syptoms? Does anyone know where I can find some info to take to my doc this afternoon- I am going at 4pm (in an hour) a little short of time I know but I do think its worth a go- I just can't shake this feeling off this time! Thanks everyone Take care x

Hi Ernie Hopefully when I see Prof Mathias he will be able to get to the root of the problem. I am still on Florinef which seems to be okay but my body has rejected everything else either immediately or after a few weeks of treatment. i have never tried IVs, never even been offered the chance. I will check out some past posts but can you tel me more?? Thanks Katie

Wow, it is really reasuring to see that life does go on with this awful condition! Hope you all continue to stay well!

Hi ben Its nice to hear from someone else in the UK!!! I am seeing Dr Somauroo in Chester who has been absolutely amazing-the only person up here to listen to me!! Unfortunately as I said before he doesn't believe so much in the way that Vasovagal and POTs can also effect the rest of your body-thats hopefully where Prof Mathias comes in!!! Originally I only suffered Vasovagal syncope but I seemed to develope POTS last year wehen my heart began working over time to prevent my black outs. How about you? How have you found prof mathias? I feel so lucky to have been able to get an appointment with him through my health insurance. i can't wait!!! I know I shouldn't have too higher expectations but I really just want reassurance. What tests and medications has he put you through? Hope you don't mind me asking! Thanks for your reply Katie

Thank you so much for your reply. Just knowing that there are people there makes me feel bettter. I have had lots of tests, all that my cardio is aware of (TTT, holter, brain scan, autonomic function testing etc) but I have a feeling that I may get different results when they are viewed by a neuro aswell (my cardio is not a fan of the general dysautonomia diagnoses- he believes my VVS/POTS have nothing to do with the ANS- something I disagree with) Anyway not long to wait now- your right I will look forward to having some light shed on it all in two weeks time! For now (to keep my husband happy) I have managed to get an appointment with my GP for this afternoon- they don't really understand VVS/POTS but it may stop the worries aboput my funny head!!! Thanks again-hope you're well Katie

Ok, this is my first proper post on this forum (having used NDRF for more than a year) and it is a really bad way to introduce myself but I just dont know what to do! I appologise in advance for what I know will turn into a massive rant about how bad I feel (even though I know full well you all suffer just as bad, if not worse) and potentially a lot of poor spelling and extra letters here anf there (my vision has gone nutts!!!) Right, I am just gonna get it all out of my system!!!! I have suffered VVS for as long as I can remember although only diagnosed 18 months ago and POTs since March this year- but I have never felt this bad before. Over time I have learnt to spot whats going on with my body, whether I am 'vasovagally' or 'potsy', if it is because I am hungry, tired, thirsty, hot, cold, in pain, stood up, lay down, got a virus etc etc etc- you know the story!!! Well now I just cant tell! I thought you may be able to shed a bit of light on whats goinf on! I have suffered all of your typical VVS/POTS symptems, with constant fatigue and nausea as well as regular pre-syncope several times daily (as perfectly discribed in a post earlier today) and black outs at least three times per week. i have been through all meds available here starting with Florinef then proprananol, bisopronol, paroxetine, midodrine, sodium chloride (lots of) and many others inbetween. To cut a very long story short my bosy just will not tollerate medication and I am now down to 0.25mg Florinef daily (I came off paroxetine just one month ago) Although my symptoms have stopped me working, exercising, doing most normal things I had adapted really well and was coping great. i could predict my syptoms and manage it well. I had bad days as a result of doingg too much butr now this is rediculous. My condition has continued to deteriorate at a steady pace over the past year but now its gone full speed ahead to distroy me!! Over trhe past two weeks I have gone from managing great to being horizontal for three days. My pre syncope is hoorrendous but I have some bizar new symptoms too (this is waht is confusing me). For the last three nights after suffering pre syncope that just would not go by doing all the usual things I have had to be taken up to bed and ssuffered the worst black outs ever! Initially I felt the pre syncope but without enough warining to get down. I then wake up (one bo later) with my usual feeling of comming around- fuzzy hearing, fuzzy vision, room spin, sick feeling, not being able to wuite feel where i am. Normally that would quickely stop and I'd be fine but the last few days I have stayed in a funny feeling where every time I move my head I would bo again. i could feel myself loosing conciousness it was soooo scarry! My husband has seen me suffer sooo many times he knows we just have to work through it together but it got to the point where he was sdaying he had to leave me for a min to call an ambulance. Ian would never even consider calling 999 unless I was really bad. I managed to stop him and he got me in bed. I continued to drift in and out of conciousness for about 20 mins before comming around properly. But the worst thing of all this is the feelings in my head. I dont normally suffer to much with my head but this has been constant for about 5 days now, althouhg much worse when suffering an episode. The best way I can explain it is squeeze you face/head as hard as you can and you get a funny tightening feeling in your head and feel as though something is going on from ear to ear. I have this feeling as well as mad vision (trouble focusing, adjusting to light, blurred and unable to judge disatance). The only thing that I have been doing differently is going to bed early (8pm) and getting up early (9am), where previously it was more like midnight til midday I slept. I came off the paroxetine a month ago but these symptoms didn't really come togetehr. I havn't got that feeling of a virus and havnt had anything for ages. I am however suffering occasional pain where my wisdome teeth are comming through but it has been okay the last few days (my worst days). I am baffled!!! My cardiologist (although great- the best I could ask for) doesn't feel he can do anything for me anymore and I am waiting to see a new condultant (Prof Mathias) in two weeks- so til then I am alone (hense taking it out on you lot!!) Whats going on????? So sorry to moan, but it does feel better just to get it all out. Thank you so much! Katie x

Hi I also have my first appointment coming up with Prof Mathias in a few weeks and I was so pleased to see this post! Thank you! I was wondering, had you recieved diagnoses/treatment prior to your initial consultation with Prof Mathias? I was diagnosed with VVS and POTS over a year ago and have been through every treatment I am aware of (unsuccessfully). I am under the care of a cardiologist and he is great with the initial syptoms (drop in BP, tachy etc) but doesnt understand the rest that comes with dysautonomia (breathing, sweats, fatigue etc) which is why I have made an appointment with prof mathias. Do you think he'll make me go through everything again??? I have kept a syptoms diary for the past month which I will email him a week before I go and I am taking him the results of my all my tests etc so hopefully this will save some time. Is there anything else that I could do before I see him? Not sure how many visits I will be able to make to London- its soooo expensive!! Thanks for your help! Hope you're doing well! Take care Katie x