Tonibunny

Hi, I was diagnosed with EDS last week, with symptoms of both the hypermobility and the vascular type. My great grandfather died of a mitral valve prolapse, my gran (his daughter) died of a subarachnoid brain haemorrhage, and my mother is extremely flexible and can still do a backbend in her 60s.....she also has POTS symptoms but she's in denial that we have this running in our family and is refusing to see her GP about it I myself have had severe scoliosis since I was a baby (first diagnosed at 6 months old, with a double Infantile Idiopathic Scoliosis curve of 64/40 degrees) but it was only when I was diagnosed with POTS that I started to link various symptoms together. Like, I have always bruised at the slightest knock, I have funny scars, etc. I also had severe bleeding problems in two of my surgeries, in 1986 and 2001. It feels quite strange that I "no longer" have IIS and that my scoliosis is now considered to have been caused by EDS. For those of you in the UK, what sort of doctor manages your EDS? I was referred to a rheumatologist for diagnosis, but have been discharged from him as there is nothing else he can do. I will continue to see my cardiologist and have been referred for physiotherapy to teach me how to protect my joints. I had a raftload of blood tests but the results will get sent to my GP. The rheumatologist was up in Liverpool whereas I live in Shropshire so now I have a diagnosis I can hopefully see someone closer to home if I need to. I suppose the main thing is to continue to see the cardiologist. As my spine is now fused all the way down (T1-L4) apart from one moveable vertebrae at the bottom (L5) I'm a bit nervous of the combination of EDS and the increased pressure that is expected on the unfused vertebra. It is accepted that this will wear out at some point, but I don't want that to happen too quickly! I had more surgery in June this year, to extend my fusion to L4 as the discs had completely degenerated and the whole fusion mass had slipped backwards. Toni xx

Thanks tons I haven't been having much salt at all as I feel so sick I have no appetite, but tomorrow I will be forcing myself to eat crisps and salted popcorn! Toni xx

OMG I nearly scared myself stupid here! It's all my fault - I'm so sorry to have worried you Julie - I meant MICROGRAMS not MILLIGRAMS. I feel thick, but I usually work with pounds and ounces! Here's a picture of the bottle.... http://www.flickr.com/photos/62533471@N00/4135203572/ Hope this looks more reasonable!

Hi Julie, The stuff I've got is Fludrocortisone oral suspension, 100mg in 5ml. I've been drinking extra water today but I have absolutely no appetite and am struggling to eat anything. Perhaps I should try taking a salt pill or two to see if they help perk me up? I've no idea what my blood pressure is and don't own a cuff or anything to test it with - should I get one? what do other people do to check theirs? Thanks again for all your help! T xx

Thanks Julie I've been taking a dose of 2.5ml in the morning by 9am at the latest. I haven't really been drinking much water though so I'll make sure I do that. I was on slow sodium (10 salt tablets a day) prior to being put on this, but it didn't make any difference so my cardiologist told me to stop for now but to hang onto the pills I had left as I may need to take them as well as the fludrocortisol.

I'm English I'm afraid The fludrocortisol I'm taking is in the form of a solution, which I have to keep in the fridge and measure out using a syringe. It sounds like Florinef usually comes in tablets - it sounds a lot more practical than this stuff! I'm already a bit worried about how I'm going to take it with me on camping holidays and things. Do people generally notice a difference pretty soon after they've started taking Fludrocortisol? My cardiologist told me it could take a few weeks before I started to feel any benefit so I'm not too worried yet, just fed up with whatever's making me feel so exhausted.

Thanks for your replies! I really appreciate it. I have been slowly cutting down the Gabapentin for several months, I was originally on 3000mg (5 X 600mg) but eventually managed to get it down to one 600mg tablet per day. Every time I tried to stop that one tablet I would feel really odd, like my brain was wired and fizzing (similar to your "brain zaps" perhaps Typewritergirl?) and I wondered if I should get a prescription for a lower dose capsule as 600mg is still quite a large dose. However, I had one last attempt to stop completely, and this time I didn't get any of the fizzy-brain sensations - just physical exhaustion, which is completely different. So, I'm not sure if it is down to the Gabapentin, or if it's because of the Fludrocortisol, or even if it's all a coincidence and I'm ill with something else! I have no idea whether to wait and see if things get better, or try taking Gabapentin again. I can't easily see my GP for advice as I'm currently staying over 100 miles from my home and I'm too ill and knackkered to get the train back, but as soon as I feel up to it I'll get myself back there.

Hi everyone, I started taking Fludrocortisol a week ago, and I feel utterly utterly exhausted and my bodyclock is completely out of whack. I stopped taking Gabapentin at the same time, and I'm wondering if that has contributed to how bad I feel. I'm really miserable, I got through a huge spinal surgery earlier this year and had been looking forward to getting my life back, and I'm finding it really hard to cope with being so incapacitated. I'm really very scared as well. I know that many people here will identify with this frustration - please, I would really appreciate some advice or support right now! Thank you.....I hope everyone else here is doing relatively OK T xxx

Hi everyone, the slow sodium didn't work at all so I have stopped taking that and am about to start fludrocortisone. I'm not upset about the salt, it was a PITA to take! Hpefully fludrocortisone is easier!

Thanks for your welcomes everyone! Emma, I'm in London too It's interesting that many of you just add salt to your diet - I asked my consultant if I should start to add more salt to my food and he said that I couldn't possibly eat the amount I need without being sick, hence the slow sodium I'd rather eat it though!!! I'm just on the salt at the moment, I'll be going back to the consultant to add in fludrocortisol. I'm not noticing any increase in energy yet, which is disappointing, but I don't think I'm drinking enough so maybe that's why. I felt horrendous earlier and I think it could have been because I got a bit dehydrated. My blood pressure drops really low when I get up from lying down; I thought this was just part of POTS but from reading the forum here it sounds like it is a separate symptom which you don't necessarily have to have if you have POTS. Is there a name for this? Anyway, I get that too, and blood pooling in my legs. I hate being inactive and tired all the time so I tend to push myself hard to do things and then end up knackkered the next day. Last year I climbed the second highest peak in Wales with an undiagnosed broken spine and the effects of POTS......I kept stopping to lie down and take morphine but I did it I'm getting scared as I am so exhausted all the time though and I really, really hope I can get my symptoms under control soon. Thanks again! Toni xx

Hi Anna, Thanks loads for your help I've bought some isotonic drinks and will try to drink those.....I'm struggling to drink loads of water as well! I took 6 pills within an hour this morning and ended up with an upset stomach, oops. I'm going to try to sort out some sort of alarm that reminds me to take the pills every 2 hours or something (not sure how, maybe my Blackberry will do this for me). I'm dying to get back to work, I'm recovering from my last spinal surgery at the moment and am soooooo fed up, I really want to get this sorted so I can have more energy!! Toni xx

Hi everyone, I'm Toni, I'm 34 years old and live in the UK. I've been diagnosed with POTS after first noticing symptoms about five years ago. I've also had severe scoliosis since I was a baby (infantile idiopathic scoliosis) and have a bunch of other symptoms which suggest it's very likely that I have some form of EDS (including joint hypermobility, stretchmarks despite being very slim, and papyraceous scars). I don't know if there's much advantage in seeking a formal diagnosis of this as I'm pretty much sick of hospitals! Anyway, finally (after having my last spinal surgery cancelled because the pre-op tests showed tachycardia) I have been diagnosed with POTS following a tilt-table test. I've been put on slow sodium, and have been told to take two pills five times a day. However I find it really hard to remember to take these, so I was wondering if it would make any difference if I took them three times a day in a doses of 3,3, and 4 pills? If could safely and effectively take all 10 at once just once a day I would! Also, how much water should I aim to be drinking? Cheers in advance, Toni xx