louloutinks

Ooh I just read back my post and it made me seem a heavy drinker lol - 7 drinks a night!!! I meant on a night I went out with the girlies not every night It was so annoying leaving early from the party last night due to feeling this way- next time I will not bother even having 1 drink as it seems to be affecting me more and more. I have been looking at mast cell issues lately because of my skin issues going on - I see you have EDS too sara. I have heard that masto can be linked with EDS???

Hi Dana and thank you for the info. On the keratosis pilaris, I did see some pics and thought ah thats it...but then I read about it. The brown marks on my skin are not just where I shave - I only shave the lower half of my legs and they tend to be top and bottom - they do however seem to return when I have the livedo bad. It is strange as all this seems to come and go. I will take a look at the porphyria (sp?) Thank you Dana

yay for the skinnies lol! My skin flares up and itches like mad if I shave too - get lovely swellings if I itch my legs. The attractiveness just gets better! My docs are useless - my lovely doc moved on and now I am left with the docs that just look at you with a raised brow - great.

I used to be able to drink anything and any amount and be a bit headachy the next day, take a tablet and all would be well. Gradually over the past few years, I have noticed that I get easily effected by alcohol and it makes me feel awful. Low BP, headache, tachy, bunged up nose and cannot sleep if I have drunk. I have basically cut out drinking and havent had a drink for a long while but last night it was my friends surprise 40th so I thought that one wine wouldnt hurt. I only had a quarter of the glass and I started to feel drunk, shaky,bunged up so had a vodka and coke thinking it was the wine. I was home by half ten. Today I have a headahe, feel distracted and odd. Still bunged up and very tired. Does pots cause this?? This only started since I have been getting all the other odd symtpoms of pots. Just wanted to add, before I cut the drinking out, I would have say 7 drinks a night and the next day I would feel completely weird, couldn't function properly at all.I felt so bad that I wouldn't even answer tthe phone as I felt so bad that I couldn't hold down a conversation.

Hi I am not on any meds but still get the goosebumps...or I can be warm and just get patches of them for no reason.

Hi Godsgal, hope you are doing fine. My pots is said to be caused by my EDS but I have heard that you can have many an issue going on at the same time (if I have made sense there). All my skin issues started around the same time and so did a lot of my pots symptoms too. If the pots is related to the eds then surely they would have shown earlier - maybe they did as years ago I went to the doc with tachy and was put on propranolol, and black outs in my twenties. But all the skin stuff has started over the past few years, cant sit in the sun when I used to all the time etc. Get dischidrotic eczema, perioral dermatitis, when I used to have such clear skin with no problems all my life. I am going to UCLH in London soon, to see a rheumatologist again - should I show them my pics? My friend is going to come with me as I am terrible at explaining myself and also they have seen just how bad my skin and I have been, as the pics do not show it at its worst. They have also seen me turning purple! What all these spots, turning purple and having livedo, I must look very attractive lol! Thankyou

I wanted to put some pics up here that my doc said is caused by my ehlers danlos syndrome. I have looked everywhere for links between eds and rashes but haven't come up with nothing. Just wondered if anyone on here could tell me what they are. I also get hives and heatrash from the sun and also rashes from water. I flush sometimes with vertigo and get sunburn now when I have never burnt in my life! I get red hot ear with bump on but haven't added a pic of that yet. Link to pics Any ideas welcome. Thankyou 80)

Meant to ask...is there a link with this and kidney function? I have been told my kidneys are not functioning at the right level - but why I do not know. GFR first test was 49, second test was 60.

Hi Dani, when I get it my eyes move fast left and right and usually when I blink. It can be due to low blood pressure so probably a potsy thing in my case. I quite like them lol!!Another name for them is 'prisoners cinema'... the only thing to occupy a prisoner in the olden days! I have been getting a lot of migraine auras but without the migraine due to light sensitivity lately too so its all probably related to BP with me.

Thank you Godsgal! You can jump on my question too lol!! I looked at the TMEP you mentioned and it looks exactly like that. Mine only lasted a week with a few odd ones left here and there now though - I read UP got worse over months.Mine started with a couple just above my knees and then on the rest of my legs by the evening. I have seen some pics on the net where people are smothered but I am not so not sure if this is the case then with me.

Hmm I get electric blue/pink geometrical flashes...a bit like the visuals on windows media alchemy to be precise! I have found out they are called phosphenes. Not sure if it is the sme thing as you describe?

A question for Macks Mum.....you mentioned 'anaphylactic symptoms in hot weather'. Just wondered if you could tell me what they could be. The reason why I am asking is because I used to be able to sit in the sun all day (if I wanted to)with no ill effects and about 5 years ago I was in the sun on holiday and started coming up in heatrash and hives, which the paramedics at the hotel recognised but another rash that they did not know. Anyway since then, I have come up in lumps if I sit in the sun. I also have some weird bumps that look like the pics Godsgal put on here that swell up if rubbed with redness around them. A couple of weeks back, I sat in the sun for about 10 mins, started getting tachy and headache and noticed reddy brown spots under my skin. I went indoors and by later on my legs were covered - it looked like I had measles. There were also the usual lumps I get in the sun. I went to the doc and he seemed unsure but said it is probably due to the collagen issues with my EDS. The rash looked like the middle pic in this link and it lasted for nearly a week. I still have a couple left over. The only thing is is that they did not swell up like UP when rubbed so I really haven't got a clue what they are. Sorry for jumping in on the post, but thought all ya'll seem to know a bit about rashes

thanks for putting the pics up.Things like that help others as some of the pics on the net always depict the worst of the worst.

To sarah and 718mom, can I ask you what you mean by 3-4 am episodes please? Wondering as I have been woken lately in the middle of the night with tachycardia and an adrenalin feeling - havenot thought to take my BP...so just wondering if this is what you mean? Thanks

Oh no - have just read this post. This forum is too good to let go of

Hi Rissy, thanks for the reply. I have looked at thoracic outlet re the numbness of my hand (and wrist) but not the subclavian one. I thought the BP difference could be POTS related. I will check them out. Tomorrow I will have the MRI, will the MRI show any of these things. I have had numbeness of my hand for nearly 8 weeks now - it comes and goes daily. Thanks again.

I used to be able to drink, maybe get a hangover if I had too much and that would be that.... but would feel ok the next day after a good breakfast and bath. Now if I drink I feel really weird - esp the next day like my brain is completely fried - the odd headache, chronic palps and tachy, dizziness,trembles and weakness, I do not even want to answer the phone cos that means I would have to speak and I would not have the brain power for that. It's like my worst brain fog /'potsy' day ever. It used to last all the next day and night and into the day after sometimes. I would be so tired but I could not sleep due to feeling so bad and this lack of sleep inevitably made me feel even worse. I hadn't had a drink for months and months then a couple of months ago, I thought 'oh it wont hurt having a couple'....how I wish I never did!! Two glasses of wine and a vodka......never again.

Mine seems to come and go (thankfully) but leads to things such as typing words wrong (right letters but wrong cleap ((PLACE lol)...I love spell check now!) I tend to lose complete track of what I am talking about .....like my mind wanders - where I do not know! Tend to repeat things without realising that I have already said things. Tend to repeat things without realising that I have already said things. Hehe! Word recall - have trouble with thinking of words, and nowadays they are not even on the tip of my tongue, as I completely forget about what I was talking about or what I am trying to remember! My left hand is now my diary as I completely forget to look in my diary - woe betide if I am not careful enough when I wash my hands and wash the writing off(if I remember the list is written on my hand in the first place!) Find it very difficult to concentrate on things and keep my mind on track, esp if there is other distractions ie noisy son just got back form school. Spelling simple words sometimes gets me - I wracked my brain over the word 'does' as I could not work out how to spell it (I am not daft but I sure felt it). Forgetting what I went to the kitchen for. Throughout my life I have had all this but very basically - but now I have ANSD it is not basic - it is a complete blank...a void...not just on the tip of my tongue, or I'll remember in a minute...it's completely washed away!!!!

Ughhh mornings - I hate them lol. Most mornings I feel awful... as soon as I get out of bed I feel I have done a 5 mile run at top speed, tachy, dizziness and breathlessness - that's before I go downstairs. Sometimes just turning over to stop the alarm starts off my symptoms. By the time I come back up the stairs to wake my son up I am exhausted. I need an hour to get my head together most days but just have to get on with it as my son has autism and needs a lot of attention in the morning - as soon as he leaves I crash!! Coffee is a must (after my first cup of tea!). I start to feel better. I start to feel bad around 6-7pm when lethergy kicks in. Unfortunatley I am not a good sleeper so by 1am my BP is all over the place, palps and tachy. How I love those days when I do not feel this way. What I do not understand is why we get the good days - surely if the brain is not sending the signals to the right places it would be constant? Why are the worst times ie mornings the worst?

Hi all I know arms do have different BP's but recently I have noticed that my arms have very different readings...ie left will be 139/76 and right will be 90/68. It is not a constant reading but it is daily. I have had pins and needles in my left arm with lots of pain for which I am going for an MRI this week so could it be related to that ?? Another thing is that my BP is always on the low side and lately I have been getting high readings like 124/98, 141/92 when I am usually low to low normal. I also get soem really low readings. So I really go across the scale with my BP's - is this all due to POTS/dysautonomia? Answers appreciated

OMG how strange. I have noticed this too - my friends have started to call me blood hound! I too smell things that arent there esp burning smells - I even got out of bed the other night as I could smell burning so went down stairs to check. Is this all to do with autonomic dysfuntion??

I find that the new polar straps are so stretchy and waht with the small clip on sensor I am not aware of even wearing it until it starts beeping to be honest I really wanted to steer clear of straps too but as I said I do not even know I am wearing it.

lol now what!! Thinkk my feelings of not being worthy of treatment stems from my GP's who basically had not a clue what was wrong so shuffled me out of the surgery as they always do. Then I finally got a diagnosis and they still shuffle me out as they still do not know about the symptoms as they are just 'general practitioners' as they put it! They tend to make light of everything. They tend to ignore everything I tell them too - I get mega fast heart rates - and more recently awful vertigo - so what do they prescribe me - a drug that causes tachycardia. Still waiting for app date to come through with gastro doc. No outhouse in my back yard!! Unfortunately!

Hi I have a polar ft40 and its great - really accurate and easy to use!

I fully agree with that dizzy. I get the shooting electrical pains right up my neck to the top of my head - ouch. I was getting usual auras - like looking through a kaleidescope but now I have started to get electric blue shapes in my vision with these headaches and lay there with a jumper(or whatever is at hand) over my eyes! My headaches have had a lovely relapse at the moment - its wonderful. Those constant **** headaches got me down but I am sure they will pay me a visit soon lol!