rach73

Hi, I sleep 9-13 hours any less than that and I have massive problems regulating my body temperature, blood sugar and I just feel awful. Having a bad day today as I only had 8 hours last night plus I haDr's drs appointment at 850am! Thought I was going to nod off in my wheel chair! Before I got really sick in 2007 I could cope with only having 4 or 5 hours and then working all day. You will be lucky to get me out of bed today! Rach

Hi, I get the right sided chest pain and I also get it centrally. I never get it on the left side like a lot of people do. I tried to tell myself it was indigestion but the indigestion remedies do nothing. I always feel really potsy when I get it so I know it must be related. Very odd but thats me all over! Rach

Love your reply Mwise, really made me giggle! I no longer consider myself a young'en but I will accept the compliment! LOL The vertigo I get for twenty four hours after even just a small tipple, started years before my POTS stuff really raised its ugly head - although I do believe that I've had POTS all my life just at a more manageable level. Now it just takes a strong drink and I have vertigo, its just not worth it any more. Although sea sickness tablets usually put me right. If anyone asks what the antibiotics are for if I am in a good mood and the person hasn't annoyed me because they are drunk I usually say its for a dental abscess. If they have annoyed me or I'm feeling a bit naughty I usually say an STI.That usually shuts them up quite quickly! LOL Rach

Hi I can't really drink more than half a pint of lager, anymore than that and I get terrible vertigo the next day. So I just avoid drinking now. My favourite excuse for not drinking is I am on anti biotics, that usually shuts people up and they don't ask any questions! Rach

Hi, Thanks so much for coming back and updating us I had been wondering how things were going for you. I am really pleased that you went to the hospital and got checked out. The home treatment doesn't sound like fun but at least you avoided a hospital stay so that's a bonus! Thanks Rach

thanks Sarah thats very interesting.

Hi, I am on the same dose as you and woke up this morning with my eye lids so swollen I couldn't open my eyes! It wasn't an allergic reaction as after I had moved around a bit and had a wee (well more than one as it hasn't stopped me peeing) the eye lids went down. Very odd, not sure if I am going to continue with it I haven't really noticed a massive difference other than my heart isn't beating out of my chest on climbing 15 stairs. My pulse is still 150bpm. I would contact the Dr. Have you been taking any opiate pain killers as they can stop you peeing? It happened to me when I overdosed accidentally! Rach

Hi, Ive had them since I was a child, but they are definitely worse now and I am 37. As a child I thought everyone could see bubbles when they looked up at the sky and in my naivety I thought it was oxygen and never said anything! It wasn't until they got a lot worse at 14-15 that I went to see an optician who told me it was migraines! I knew what migraines were as I had them from the age of 11, and migraine auras are nothing like floaters. You do get used to them but they are still mildly annoying. I have a largish one that floats in my right eye, sometimes it obscures what I am reading. But what do you do? Rach

Hi Songcanary, no problem. I think its the most informative site on the internet for ME. I try and put it on as many forums as possible to get the word out! Rach

Hiya, Nice to meet you. I am from the UK - Devon and my sister has ME and is now being investigated for POTS. This site is excellent for asking questions and has a wealth of information on it. I followed this site for a year before finally being diagnosed in January 2011. There is quite a bit of cross over with ME and Pots, I know you have been ill for a while but you might not have come across this site. I learned more about ME in ten minutes than I did in the 20 years my sister has had ME. This is the site http://www.hfme.org/methemedicalfacts.htm this explains a lot of the autonomic nervous system dysfunction with ME, especially the orthostatic intolerance. It also goes into great depth about the condition itself and explains things really well. There are also many people on here with first hand experience of living with ME. That's really good that you have found a Dr to listen as I know many Dr's in the UK are still under the misguided belief that ME is a psychological illness, so as soon as they see you they want to label you as A. an attention seeker, B. depressed and anxious C. conversion / somatization disorder. Good luck with the TTT Rach

Hi, I also have a low body temperature I run at 35.7 degree's C ( USA 96.3 ) to 36.5 (USA 97.7). I pretty much always feel cold in the summer I am the one wearing gloves and a sweatshirt when everyone else wears a t-shirt! I feel ill as soon as my temperature hits 37 (USA 98.6) if it gets as high as 37.5 (USA 99.5) I can start to hallucinate. If its gets to 38 (USA 100.4) my skin feels like its burning off me and I am well and truly out of it. The problem I have is unless you have a temperature of 38 in the UK a lot of Dr's don't think you are ill. Some Dr's (in the UK) are taught 37.2 and above is a fever, some are taught only 38 and above is a fever. My mum and sister are the same and run low body temperatures. My sister was recently hospitalised with a severe infection - no temperature a minimal rise in white cell count. Many years ago I had a bowel obstruction and was really poorly again no temperature and minimal rise in white cell count.The whole time I was in hospital my temperature never went above 37 - which is classed as the normal body temperature. I know other people with POTS / ANS issues and they all have low body temps. (sorry if my conversion temps are out I had to use the converter on my mobile phone so that I could work out what the temps were in Fahrenheit!) Rach

I'm glad I am not the only one whose brain is failing to play the game today! I'm giving up for a few hours and climbing back into bed. Can't focus on anything as my eyes are playing the "lets roll back in your head game and see if you can manage to focus on anything". Rach

dont worry I am clueless too! heres a link I found which explains it http://en.wikipedia.org/wiki/Valsalva_maneuver most of it went over my head but I am having that sort of day! Rach

Thanks Firewatcher. I am so paranoid about Dr's that I just needed some reassurance. I am just so used to them saying one thing to your face and another in any correspondence, I find it difficult to trust anything they say. I panicked thinking they would take the diagnosis away. Thank you. Rach

Hi, just a quick question. I had a letter back from the hospital today that said the valsava maneuvers were normal that were performed during my tilt table test. What does this mean in regards to my diagnosis of POTS? I didn't perform them during the tilt table test as I started vomiting. The valsava maneuvers were done with me lying flat on my back and caused a lot of discomfort in my chest with forceful palpitations. Would that have altered the result in anyway, doing them lying down? Thanks Rach

Thank you for posting. Two very good articles. Rach

Hi, I am really sorry about the report but it doesn't surprise me. Inaccurate reports should always be challenged. I had to wear a pulse ox for 17 hours - (which should have picked up the POTS but it was a respiratory specialist I was seeing). Countless times my oxygen levels plummeted whilst wearing the pulse ox. I had to fill in a form to say when I got up and moved around etc. When I lay still my oxygen levels were fine. When I moved or talked they dropped. After looking at the pulse ox reading and having functional tests to measure lung capacity the Dr told me I was holding my breath! Even though the form I filled in clearly stated I was talking when getting low oxygen readings. The oxygenation levels plummeted for over 10-15 minutes, I can't hold my breath that long! Every Dr thats read the report since has laughed at the sheer stupidity of it. But if it wasn't something like oxygen levels and it being impossible for someone to hold their breath that long then it could be inferred that I was doing this to myself by holding my breath. Challenge the report as it is inaccurate, you have more scope to do that being in the USA. You paid for the service the least the Dr should be able to do is complete a report accurately. Rach

Hi, just been chatting with my mum this morning and she says my sister's sense of smell is very acute, but she also has the phantom smell issue. I also do the burning smell, which causes me to panic! Its very odd but I am happy to see that my sensory weirdness isn't something that I am dealing with alone! Rach

Hi, Thanks for your replies.....that was quick! I am actually a smoker so cigarette smoke doesn't bother me. I'm not massively chemical sensitive either although I have stopped using a lot of chemicals around the house. I rely on white vinegar and washing up liquid to do a lot of my cleaning now. Saying that I have got extremely sensitive to perfumes and aftershave. Its unfortunate as my mother in law and sister in law buy for me for Xmas- I dont have the type of relationship with them where I can tell them it causes me problems as they struggle to believe I am ill anyway. I can't wear perfume as I get headaches or it just stays up my nose for days on end LOL. So I end up gift recycling and passing it onto someone else! Before I became ill I could wear any perfume, now its none. One smell I absolutely love is Jeyes Fluid I don't know what the US equivalent is, its a type of bleach based cleaner thats dark brown and used for kennels etc. But this stuff is actually put in areas where undesirables congregate to make them move on! I use it on the patio for the dog urine! But my neighbor is really sensitive to the smell so I only use it on days when she is at work. I just can't get enough of that smell, but a lot of people hate it! Saying that the smell of bleach makes me feel sick and stays up my nose for days! After I posted this I forgot one really weird change in taste for me which is Fry's Turkish delight - again I am not sure if you have a US equivalent. The choc bar divides people in the UK as a lot of people don't like it. I have always loved it.............until I got ill. I will eat it if its bought for me, but I just don't enjoy it like I used to! Thanks for your replies Rach

Hi, I just wanted to ask if anyone has noticed a change in their sense of taste and smell, or maybe just one has changed for you? My sense of smell has become quite acute - I can smell if someone hasn't washed their hair ( I don't mean not washed it for months LOL, maybe a day or two) to me it gives off a particular smell.- maybe that comes under phantom smells as well - see below? I also have the problem of what I can only describe as phantom smells.Lately I have asked my husband if hes had a drink because I can smell stale alcohol - unlikely as a) he drinks about 3 times a year he would be sacked if he drank at work. I was also convinced that my carpets upstairs smelt of dog urine - yes I have dogs, big dogs but I would notice a big wet patch if someone had an accident. My lounge curtains are also smelling of urine - no one else can smell it. I will smell it for days even weeks on end and then it goes its very bizarre. My sense of taste has really changed also. Foods which I have adored no longer do it for me. Everything tastes of salt - this was before I started adding salt to food. Now I just have to accept it. Things like orange juice would taste of salt?? I have always adored cottage cheese and could eat it plain straight out of the tub - since a young age. Now I can't stand the stuff, it tastes sour and revolting. I loved sweets chocolate etc, if it was in the house I had to eat it. Now I couldn't care less, it no longer tastes as good. Its all just very strange. I seem to have to have strong flavours now before anything registers on my tongue. I have had brain scans MRI and Ct's, nothing has shown. Has anyone else noticed their senses changing since becoming ill? Thanks Rach

Hi Nowwhat! I loved your line "Whatever - I have 8 crowns as it is - maybe typical for eds to have a mouth worth the cost of a new home...sigh - things could be worse though - always things could be worse!"Completely cracked me up! Thank you Rach xx

Hi, In regard to your question were our medical problems evident as children.... The EDS issues yes but undiagnosed. My sisters autonomic problems came to a fore when she developed ME as a teenager at that point she would have had the dyslexia diagnosed for around 6-7 years. Like Macks Moms son she has real problems with short term memory due to the dyslexia so a variety of teaching methods / styles have to be employed to help her remember. You could say something over and over and she wouldn't remember it. I started getting problems with dizziness / fainting from about 15. I just put it down to low blood pressure. Then from the age of 30 things got a lot worse. If I stood up too quickly I would get very disorientated and have to hang onto something, again I just put it down to low BP. I had a couple of nasty pre syncope episodes where if I hadn't managed to get to the floor my body would have taken over and done it for me. Then at 33 is when I got really sick. I don't know what triggered it I went to sleep feeling fine on January 4th 2007 and woke up January 5th with a horrific migraine and life hasn't been the same since. Rach

Hi Naomi, My leg pain starts as soon as I lie down, I get it in the left leg only and I've had it for years but its been dismissed by previous Dr's. As I have now changed Dr's I will bring it up with them. The burning starts within about 30 seconds of going to bed at night. On a bad flare it will start also if I have to go to bed during the day. Its incredibly annoying a burning almost itchy feeling that is also sometimes painful. I can't bare anything on my skin when its like that. Even the pressure from my knickers on the skin of my hip can drive me insane. Its very bizarre. I put it down to a trapped nerve as I have a lot of low back pain and pelvis pain (bones not organs) and put it down to that. I now realize it neuropathic pain. I would have never of known that until I came onto this site. Rach

Hi, I have a mouthful of amalgam fillings from as soon as my milk teeth came out. I have classic Eds teeth, deep narrow fissures which are impossible to clean. It should have been a red flag for my dentist as I also had to have 4 teeth removed due to over crowding - another EDS flag. If they had picked it up I could have had my teeth sealed and it would have prevented the fillings. Never mind they are all sealed now with amalgam! Rach

Hi, this is very interesting. My sister has dyslexia and is extremely intelligent. She has trouble with P, B, D etc which leads to interesting text messages and emails! LOL She is yet to be diagnosed she is just starting her journey after being diagnosed with ME over 20 years ago. Now I have my POTS diagnosis she is hopefully going to be tested.Plus I am being checked out for EDS and hopefully again it will pave the way for her. I have the dyscalculia - awful at maths just get number blindness. Although when I did my exams at school in my group I was good at algebra. We had ongoing assessments, on the basic maths I would get an E grade, when it came to algebra I would be one of the few that got an A. It makes no sense but a while ago there was a maths prof on the TV. She had dyscalculia she couldn't do basic maths but could do trig and algebra! So I am not alone in my weirdness! I also had problems telling the time - didn't understand a clock face at all. However thanks to the introduction of digital watches I could get away with it. It wasn't until I was about 18 that I could tell the time. If I had a normal watch on if anyone asked the time I would have to round it up to the quarter to, quarter past, half past, or say it was xx o'clock. I was so embarrassed at my inability to tell the time I never told anyone. How do you explain that an A grade student in all areas except maths can't tell the time? Sorry I have rambled on! Rach