rach73

Hi, I was diagnosed with EDS 3 last year. I suffered with pain everyday that was a 5 out of 10 but no one took me seriously until I switched Drs. Due to the level of pain I am in I am on slow release morphine twice a day. I have a hypermobile spine and I pop discs like its going out of fashion. Lately its been my coccyx (sp) playing up and that is very painful. I dislocate fingers, toes, elbows, hips and shoulders quite regularly. I am still in pain but try to keep on the lowest dose of painkiller I can get away with as I have a long life ahead of me and I dont want to run out of pain killing options. Rach

Hi Lynne, My POTS Dr told me on no uncertain terms not to do hydrotherapy. Firstly due to the heat and secondly due to the fact being in the water would make me want to urinate more. I have problems with frequent urination and only have to hear a tap drip and I'm off! If cool water works go for it! Rach

Thanks for the reply, its very interesting. Ive had to stop taking the midodrine at the moment due to a uti. Midorine makes it difficult for me urinate so my GP has said better to stay off it whilst the infection clears. Rach

Hi, Something strange has happened - a good strange lol. Since starting midodrine my ptosis that I've had for nearly 4 years has resolved. My eye closes completely when I am having a bad spell and most days I look like I have a lazy eye. The only thing that ever resolved it before was mestinon, which is why I had years of tests for myasthenia gravis. The first day I took midodrine I had really bad ptosis and one hour after taking the tablet it resolved. 2 weeks on I woke up with bad ptosis and one hour after taking midodrine it was gone. In 4 years the only thing that ever resolved my ptosis without taking drugs was bed rest, it never resolved without medication (mestinon) or bed rest. I have measured by BP when I have ptosis and it can be low or it can be normal so I am struggling to comprehend why the midodrine works. Obviously both mestinon and midodrine up my blood pressure and resolve my stroke like symptoms ( I not only get ptosis but my whole face drops also so I look like I've had a stroke). I just wondered as I know there are a few on you on here with ptosis found the same thing when taking midodrine or am I still a medical mystery lol! Thanks Rach

Thanks for the reply. I'm taking 2.5mg it hasn't done anything for my BP but then its only been 9 days. I didn't take it yesterday to give my bladder a break and I could pee no problems. Ive started it again today and no problems so far. So I will just wait and see for a bit. Rach

Thanks for your replies. I had guessed that the problem would probably get worse the more the dose was increased as its issued for people with urinary incontinece as well. Ive decided not to take it today as my bladder needs a break. I will try again in a few days but if it continues I can't take it. Im prone to UTI's and urinary retention is only going to make that worse. Thanks again Rach

Thanks for replying. The straining to urinate is only happening when the dose is active and eases off between doses. However my bladder is aching from me having to push so hard! I urinate frequently one day I got bored and counted how many times I went in 24 hours it was 26 times! So its very painful when I have to go this much. Im going to give it a few more days if I can, but if it gets too bad I'm just going to have to call it quits. Rach

Hi, sorry I know its another midrodine question! I started midodrine last week 2.5mg twice a day. Im having the side effect of piloerection (hair standing on end - not literally) which although weird is ok. My main problem I have developed over the last few days which is having problems urinating and it causing pain. I don't have a urinary tract infection, the pain isn't burning at the urethra etc. I have a lot of UTI's so I know its not that as mine follow a very set pattern of signs and symptoms. It is listed on the patient information leaflet that came with the drugs as a side effect. Has anyone else had this problem and did this side effect lessen overtime? I can't use florinef as it gives me awful headaches and I really don't want another drug written off due to side effects. I can't tolerate mestinon either. Any info would be appreciated. Rach

Hi, I'm the oldest of two but we both have POTS and EDS. My sister developed severe POTS symptoms at the age of 14 (shes 2.5 years younger than me) I developed severe symptoms at the age of 33. Since both of us have been diagnosed it has become clear that both our parents have EDS and my mum I believe has POTS. Interesting poll. Thanks Rach

Hi, Ive had ptosis (medical term for droopy eye) since January 2007, I get it in one or both eyes. Mine can get so bad that I am left with no sight, my eyebrow drops and so does the corner of my mouth. Ive taken my blood pressure when this happens sometimes its normal sometimes its low. My drs originally thought it was myasthenia gravis, well actually they said bells palsy first.... but as the lower lid didn't droop it doesn't fit Bells palsy (with bells due to the lower lid drooping you can't close your eye, with mine I can't open my eye). We (my drs and I) are still no further on in understanding why I get this, most Drs outside neurology believe its bulbar MG, neurologists say it isn't MG, my GP currently believes its my fluctuating blood pressure that causes it. I have a picture of myself with ptosis on my blog and its very similar to yours. I can wake up with ptosis or I can develop it during the day. Most days my eye lids look lazy! lol about once a week I end up with one or both eyes shut. Either rest or mestinon resolve it. Thanks for sharing I am glad Im not alone with the droopy eye symptom! Rach

Hi Sandy, I haven't been on in ages due to a hideous POTS flare and now an EDS Flare. I got my EDS diagnosis in May 2011 but have always known something wasn't right as I was in constant low level pain for as long as I can remember. My EDS has rapidly progressed over the last 12 months - problems using my hands opening jars, typing, anything that requires small controlled movement. My back is awful, my iliac crest pain makes me want to throw up. I feel like a 90 year old and Im 37. I am on morphine slow release tablets which take the edge off. Im hesitant to increase as I have a long life ahead of me and dont want to be out of pain relief options. However I also know that my pain varies daily and on occasion I can wake up and never know that I had EDS. I can move my spine without popping discs or the muscles going into spasm. Its a strange wacky condition that waxes and wanes, so please dont panic. My paternal grandfather had two aneurysms - none of us in the family have been tested for VEDS, we are however going to be having genetic testing shortly as both my sister and I have hypermobility EDS and bad unstable POTS. Try not to panic ...... easier said than done I know. Just remember you aren't alone. Rach

Hi I had terrible night sweats that started in 2006. I would even sweat if I took an afternoon nap! It was so bad that my hair would look like I had just come out of the shower. My sheets would be imprinted with a body as I had soaked them through. I started florinef in March and I haven't had night sweats since then. Its the only thing I can credit them with as my BP still swings around something terrible during the day. I had limited results taking ibuprofen at night - some one suggested it on here for night sweats. I had to stop taking it due to reflux. Rach

Hi, I have an oxygen concentrator at home due to issues with low oxygen saturation and I am in the UK. When I got the oxygen I was under a neurologist with suspected Myasthenia Gravis. I had several episodes where I had been blue lighted to hospital feeling that I was unable to breathe and my oxygen sats were at 92% I am normally 99 -100 (despite the fact I smoke). I had a load of tests done at the hospital which showed nothing wrong with my breathing. However I had to wear a pulse ox taped to my finger for 24 hours and this showed significant drops in o2 saturation on anything other than lying down. Walking dropped me down to 84% talking on the phone 91%. This was all before I got my POTS and EDS diagnosis. The pulmanologist I saw accused me of holding my breath!!! My neurologist took one look at the results and decided it was better that I had oxygen at home rather than keep coming into hospital. To this day no one seems to know why this happens and I am not under any respiratory specialist - yet I still have oxygen. I use the oxygen when I feel short of breath or if I have a severe headache as it seems to help then also. I think its due to a build up of co2 in my system. I am still under investigation for myasthenia gravis - 4 years later. The way it works is the hospital consultant has to inform the GP you need oxygen and then the GP orders it. Rach

Hi Thank you all for your replies its so very kind of you. I'm sure its a bump in the road that will soon pass, its just very frustrating. I think if it continues after the antibiotics I will get in touch with my consultant. He did say to contact him if things weren't going well. Thanks again and sorry to ramble on. Rach

Hi, Sorry but I need somewhere to vent and get this off my chest! No pun intended! 2 weeks ago, well actually its very nearly 3 weeks - heck who's counting! I started to get sick with a chest infection. As usual because I loath going to Dr's drs I decided that it was viral and it would get better of its own accord.( so I know its my own fault!) For over two weeks I struggled on, barely getting out of bed because I felt so ill (with the infection and pots)on day 18 my husband put his foot down and called the drs surgery. He asked for the Dr come and see me or at least ring me as I couldn't cope with sitting in my wheel chair to visit the Dr's, he rang me and after a long conversation he said I had a chest infection. Ive been on the antibiotics for a couple of days and my chest feels loads better but I am exhausted beyond belief I am struggling to walk and pretty much do anything at all for myself.Getting out of the bedroom for a change of scenary is leaving me utterly depleeted of energy. I didn't think I could get much worse than I already am but its happened. I'm on florinef I take 0.1 and 0.2 on alternate days - I think I will have to drop the dosage back to 0.1 every day for a bit as I am getting migraines with auras now. I am drinking loads of fluid and having salt added to my food etc. However my blood pressure is still low..... for me I usually feel ok as soon as I am at 110/60 any less than that and I can feel it. Today the highest its been is 103/68 and the lowest was 88/40. I don't know what to do to try and get myself back to my normal level of ill health lol! I can cope with my normal crudiness but these last few weeks have hit me really hard. Any suggestions will be warmly recieved and thanks in advance xx Rach

Hi, Temporal lobe epilepsy can also cause visions / hallucinations and is a condition that should be checked out. I don't know much about it personally Ive just read a few magazine / newspaper articles regarding it. The visions / hallucinations can be present for varying amounts of time and feature anything. It can be quite difficult to diagnose - so you would need to see an epilepsy specialist who has other patients with this condition. When diagnosed it can be treated the same way as other types of epilepsy. I hope this helps Rach just found this link http://en.wikipedia.org/wiki/Temporal_lobe_epilepsy

Hi, I find 0.2 gives me awful headaches so my consultant has given me free reign to find the dose that works the best without the headaches on the understanding that I contact him immediately if things aren't going well. At present I alternate my doses by taking 0.2 one day and the following day 0.1 It has stopped the headaches but at present its too early to tell if my fatigue has increased. If this doesn't work the next step is to take 0.150 (one and a half tablets) every day. He's happy for me to keep playing around with the dose until I find one where the headaches are gone but I am getting some benefit from taking it. I have to say my night sweats which I have suffered with since 2006 have now gone since starting the florinef. Both my consultant and I think I had the sweats due to my BP dropping too low overnight whilst I slept. Who knows I am just glad they have stopped. Rach

Hiya, I saw on neurotalk that one person with MG was crushing it up and letting it dissolve under their tongue and they were avoiding the gastro side effects.However they did state it tasted revolting! Others suggest taking it with food like dry crackers. Hope this helps Rach

Hiya, I can only give you what my cholesterol is in the UK so I don't know what the USA equivalent is. My cholesterol is 6 (good in the UK is 5 and below). In 2007 it was 7. My GP at the time hasn't been concerned with either figures as I am low on the bad cholesterol and high on the good cholesterol. Rach

Hi Chrissy Take a look at these links as I think the spains and ankle ligaments are screaming EDS. I had no broken bones as a child I had a couple of dislocations. I am 37 and got diagnosed with EDS in May 2011, my sister was diagnosed with POTS and EDS in June this year. My sister broke her wrist by falling over whilst on roller skates as a child. Both of us have wide scars as we heal strangely. But we have all the other markers for EDS. http://www.hypermobility.org/beighton.php http://www.hypermobility.org/diagnosis.php http://www.ncbi.nlm.nih.gov/books/NBK1279/ Ehler-Danlos Syndrome Ignore the fact the first two links say hypermobility as in the UK most Drs who treat this disorder now say hypermobility and EDS hypermobility (formerly EDS3) are the same condition. For EDS hypermobility you don't need the loose skin thats mainly found in classical EDS. Hope this helps Rach

Hi I also get a lot of headaches now. Ive suffered with migraines since I was 11, but over the last few years the headaches have lessened. Over the last few months my headaches have come back again not migraines but quite intense headaches. I have found that they are linked to my neck. I have EDS and get a weak neck and have to wear a foam collar when it gets bad. I have noticed that the headache pain lessens when I use the foam collar. Theres probably something being compressed in my neck as I also get very dizzy when I turn my head to the right. I was wondering when your daughter gets the pain in the back of her head and neck if she has tried using a soft collar to see if that relieves the pain. Rach

Hi Ive just seen this post. I hope K is doing ok and you have managed to get the Drs to listen to you. It must be awful for you to have to stand by and watch this happening. Just to let you know My husband and I are thinking of you. Rach xx

Hi, Just thought I would share with you this artcle from the Daily Mail in the UK http://www.dailymail.co.uk/health/article-2014112/Drinking-water-bad-health-Benefits-myth.html It made me laugh as I am constantly thirsty and like many of you have been told to drink loads and take more salt. So does anyone think there is any truth behind it? As for myself I will be continuing to drink loads as I can't stand the dry mouth and the raging thirst I get. Rach

Hi, I had a positive TTT for POTS back in January this year. I don't know what my starting / resting HR was but I went into the 150pm range. About 5 minutes in I started vomiting which was a nightmare as both arms were strapped to my sides. I have no idea how long I was upright it seemed to take forever. My HR did start to drop after a while of being stood but was still in the 120 bpm range. My blood pressure stayed elevated during the TTT. As soon as I was lowered back down my HR and BP dropped significantly returning to normal within minutes. The guy doing the test said he had never seen such a dramatic response to being put back in the supine position. He told me there and then I had POTS. My sister who was tested last month by the same hospital team went from 80bpm resting to 162bpm standing. They gave her the GTN spray up her nose and watched her heart rate / BP drop they then swiftly lowered the table before she passed out. I'm a bit jealous as they went through the print off with her I am still waiting for a copy of the print off! lol Both my sister and I have now been diagnosed with POTS and EDS hypermobility. Rach sorry for any mistakes in this - I have full blown ptosis and can't see out of my right eye again ..... still no answer to why that happens.

Hi I started geting migraines at age 11. I can remeber the first time it happened. I was 11 years old and I was supposed to be running a stall at the school fete. During a break I went to play football, in my right eye I started seeing really bright colours red , green and blue bands. Where those colours were I couldn't see. Over an hour the colour bands expanded and then I couldn't see anything but these colours in my right eye. I went home for lunch the headache started and so did the vomiting. The pain was unbearable I had to lie in the dark for hours just waiting for it to pass. As a teenager I ended up with these migraines 2 or 3 times a week. I would end up paralysed on the left side of my body and have pins and needles. My speech would be slurred and I would look like death warmed up. Nothing stopped the migraines happening. As my grandmother was dying from bowel cancer at this time my migraines were put down to stress. There was nothing in my diet that was triggering them. It was just awful and it would take around 3 days for me to recover and then I would be straight into another one. No investigations were carried out and none of the preventative medication like asprin daily worked. No painkiller got rid of the pain. I only have migraines a couple of tmes a year now but daily I get flashes of colour or black and white zig zags in my right eye. I presume that this is a visual migraine with no headache? They last seconds. When a full on migraine follows I will have the visual stuff constantly for 45 mins. I either lose my peripheral vision or get tunnel vision or my vision is obscured by a white mist or smoke. In those 45 nutes I had to load up on sugar and take my migraleve tablets. If I dont take the tablets quick enough the migraine is horrific and the vomiting starts. I get very anxious when the vision problems start. I feel the same way when I get ptosis and lose the vision in my right eye from the eye lid closing. I think its curious that my migraine symptoms happen mainly in m right eye and its my right eye that also has the migraine visual warning in it. My mother, father, sister and paternal grandmother all suffer with migraines with visual symptoms starting first as a warning. We all notice as well that we are excessively hungry 24 hours before a migraine, where nothing you eat satisfies your hunger and the more sugar you can get the better. Very odd. Thanks for starting this thread.