louloutinks

I am now vomiting when I brush my teeth - my right nostril runs badly when this happens. Nausea every day. Today my head is crucifying me just by raising myself up slightly in bed. I have had the worst stiff neck ever this mornign but has subsided slihtly. Movement is killing my head apart from laying down flat on my back. If I stand it is agony, then I sit and its get worse for a moment, I lay down it improves but does not go. My left ear has tinnitus, hissing and popping. My neck is painful on the left without movement but very stiff to turn to the right. Just typing this my head is real bad as it is slightly elevated. I want it to stop.

Hi PG I get this too on a regular basis - it is scary! Sometimes it lasts hardly any time at all, a bit fleeting and then it can last 10/20 mins or so. I felt awful the other week with it. Had to come home from my friends as I felt really odd and bad, and I couldn't concentrate - couldn't manage to make a cup of tea as I didn't know what to do - the order was really confusing so I went to bed - my son was talking to me and I could hear the words but I couldn't work out what he was saying (if that makes sense) and I just had to go to sleep - I also felt nauseous with it too and it all lasted just under an hour (well I fell asleep).

I have noticed with a hot bath - I start to itch and then the hives appear - thats happened a handful of times or so. Sitting in the sun causes them too. But as for the other times I haven't got a clue what brings them on. Tell you what else I get which is weird: after swimming or a bath I come up in a brown rash all underneath my breasts and torso which looks sort of like a load of freckles. They last about 30 mins then go. I have had some strange looks when I have stood in the communal shower.

Hi Naomi I too get hives. In the morning before I have eaten anything. The last time I had them pretty bad on my neck and my neck swelled up. Not sure what is going on there. All my problems started with hives many years ago in Dubai and things havent been the same since!!

In 2002 I went to Dubai - I was very fit and healthy. I got off the plane with severe dizziness and ear pain, and fainted. I was in bed for the first day of my holiday. Whilst there, I got hives all over my body and another rash which got infected as it was so bad - I looked horrendous. Came home and another awful flight. I started to get skin issues - dishidrotic exzema and perioral dermatitis which was so bad that I had to take myself and son to my mums to look after us. My eyes were closed as there was so much dermatitis on them. Prior to all this I had flawless skin. I then started not to be able to sit in the sun as I got tachy and hives. Gradually over time I noticed that I kept getting dizzy/tachy/breathless on standing and even walking, I would have to find something to hold onto. I was getting serious problems with my sacro joint that I couldn't even get out of bed (I have EDS). Even walking up my stairs, I had to lay on my bed to recover - I was also so tired, I suggested board games instead of the park to my son - I had to sit down - my doc said I must be depressed but I kept on at him so my doc sent me to a rheumy who said I'd subluxed my Sacro joint - she sent me to London to see and EDS specialist. I told him about dizziness and he took my BP and HR (poor mans tilt) and said it was pots and to have salt and water. I had awful gut motility, dizziness,headaches, severe fatigue, pins and needles, burning skin. In between this, another doc dx'd me with fibromyalgia. I started to get numbness in hand/arm, BP swings, hot flushes, livedo reticularis, always cold but couldn't handle high heat, chest pains (ST elevations on ECG but no heart attack). Now I get all the previous but also painful hearing, hearing problems, serious headaches, neck issues, nausea, visual problems, flushing, tremors, numbness and rashes amongst others and was sent back to rheumy in London. He said it all seems to be to do with autonomic system but not sure about the rashes - he is sending me to the Autonomic dept at the Neuro Hosp in London to get it all checked out and asked them to check out/refer me for rashes. Sorry that was so long but things have progressed. I must say that when I was 20 I used to faint a lot. I also was put on betablockers as my resting HR was 120 and was told I had anxiety. I found queuing difficult back then - was this pots with me back then, then my immune system took a crash in Dubai and pots has kicked back in full force?? I just do not know.

I get weeks of urgency and urinating lots at night and then it all returns to normal and with the urgency have had a couple of leakages but put that down to childbirth

I went from a UK size 8 to UK 14/16 in a short time, with no change of diet. The past nearly 2 months my weight has fallen off me for no reason and am a uk small 10/12 - I feel really thin now

I have horizontal ridges and vertical too. I also have a thickening of the nails ( for 10mm before where the white tip starts). What causes this?

I had a sandwich during the day today as I felt hungry for once in the day, and after I felt really nauseous and could not keep it down (sorry TMI).

Hi Maiysa and welcome to the boards. I too am being wakened by shaking of my biceps and triceps during sleep - quite concerning as it is not just a light shake it is rather fast and hard and in the mornings my arms actually ache from all the contracting they have been doing over night. I haven't an answer for you but will keep an eye on this thread and hopefully someobne will come along soon to answer you

Me too Maia, I have lost loads of weight - but then I packed on loads for no reason too a year or so ago - so much so that I went from a size 8uk to size 14/16uk. Am tending not to eat in the day. I seem to be ok to eat after 5/6pm then have a light meal in the evening on top of my dinner- just can't seem to face food in the day.

Very odd that in the mornings, stairs cripple me - I am so short of breathe, get pounding head and awful tachy. But in the afternoon/evening I seem to cope better as I do not get so short of breathe - made me start thinking I am just unfit but I still cannot understand why pots has its own rhythm - surely if the signals from the brain are not getting through, then this would happen all the time. Saying that, I get tachy every time I stand so maybe my body finds things harder to deal with upon waking??

I tend to get tachy and really tired I have noticed, when I eat pasta, rice etc - why these things I do not know?

I am 42 yr old female, Caucasian from the UK. Also have EDS with marfanoid habitus so expect the pots comes from there.

My rest pulse varies but this morning pulse went from 83 to 149 and yesterday it went from 66 to 125. Not sure what it is like when I am sick as I usually feel too rough to take note. I know I fell asleep with a HR watch on and when I woke in the morning it shot up to 180 when I jolted over to turn the alarm off - probably the shock of the seriously LOUD alarm going off -it's enough to give anyone a fright!! Usually my pulse shoots up straight away, but there have been occasions when it has gradually got faster and faster over a couple of minutes. My worst is walking up stairs in the morning with my coffee - 14 steps and I get serious tachy and tough to breathe. Does any one else get this with stairs and if so, why is this? Later in the day it is not too bad going up the stairs.

Hi Naomi, not sure what the tastte is in my mouth - not metalic or salty. I am hanging on the side of not CSF because my headaches do not completly go when I lay down. I do have EDS and I read on wiki that there is a link with this and CSF. My doc is doing nothing - I am waiting for an appointment at the NHNN in London (Uk main neuro hosp) and they may be able to deal with this there? Bren, you have had a leak (lol). Did you lose your hearing with it too. i have had a brachial plexus and cervical MRI. The first was clear and the latter showed minimal bone spurring. I HAVE to have a coffee in the morning Bren - cannot function withouht it. A while back, about 2 years ago, I was told that I had subluxed my sacro joint and it was agony but have not had any lower back issues since. With the GP's over here, it is just a 5/10 min appointment slot - wish we could just ring them up and speak to them. Speak soon Bren x

OMG I just looked CSF up (I looked up CFS at first lol - chronic fatigue syndrome) This is what I found: The headaches only occur when the patient is upright, and gradually disappear when the patient is lying down. In most cases, the headaches gradually increase from the moment the patient wakes up in the morning. However, in other cases the headaches are quick and severe. The acuteness of the headaches varies in each case, which affects how quickly the condition is diagnosed. Some of the related symptoms of SIH are a loss of hearing, tinnitus, vertigo, stiffness of the neck, nausea, and even vomiting. And this on wiki: A CSF leak is most often characterized by a severe and disabling headache and a spectrum of various symptoms which occur as a result of ICH. These symptoms can include: dizziness, nausea, fatigue, a metallic taste in the mouth (indicative of a cranial leak), myoclonus, tinnitus, tingling in the limbs, facial weakness amongst others. I told my doc this ,mornign that I am waking up with a dull headache every day and by lunchtime it is full on.I have been getting a horrid taste in my mouth (not sure if it is metallic though) and have been waking through the night by shaking of my arms (the vibration wakes me up) and last night even my butt cheek was shaking along with my arms. I have had tingling and numbness in my left arm and the hearing loss was in my left ear yesterday. I have also been getting a sharp stabbing pain in my jaw bone just under my left ear but only in one spot. The only thing is is that even when I lay down, I still have the headache but just not as bad - it takes a while for it to ease but hits hard again on standing. So it doesn't go fully when I lay down, so that is making me think otherwise but all the rest seems to fit. I do not know if this is related but on saturday I had to coem home from a friends house as I felt bad. Started with nausea, and then I came across really unwell in myself, I found it difficult to make a cup of tea as I didn't know what I was doing, so I went to bed. My son was speaking and I heard the words but they made no sense and I felt irritable with my son and told him to be quiet, as I didn't feel good. Never had that before. Could this be related to the headaches I am getting. My doc did ask if there was any toher odd symptoms and I didn't think of this or the funny taste I get - didn't think it was relevant at all and thought it may be dehydration.

Hi Naomi and all Went to the GP this morning and told him about the headaches etc, he wrote it all down, looked in my ears which were fine. He said they may be tension headaches and to keep an eye on it and if they carry on or get worse tehn come back.My neck has been extremely painful too so maybe thats it. I told him (i felt stupid saying it )about the hearing loss I got with the headache yesterday - he said it wasn't stupid. I presume the whooshing is just caused by BP as I never used to get it like this - I used to only get it if I laid on one side of my head when I went to sleep but now I get it whenever, whatever I am doing. My Bp was 125/86 at the docs today so he said that was normal too. My thoracic mri did not show any compression in that area at all but the specialist said that the sunken veins on elevation show that there is compression. I did have different BP's in both arms but I haven't been checking that to be honest. There must be something making my arm have numbness daily and constantly - but they are sending me to physio to deal with that. I need to do elevated arm strengthening. Whats an MRA by the way? I will look up CFS

Bren how are you Hope you are well. I have an appointment tomorrow at my GP but that was for help to stop smoking (I know its awful). I had a batch of headaches that went on for over 3 months at the bbeginning of the year Bren. Today was concerning because of my hearing - it was literally like the wiring was faulty giving the on/off sound. My headache is now back so I am back in bed. I do try NOT to take tablets but today and Tuesday I have had to as they were unbearable and the tablets did not get rid of them completely. I pulled the blankets over my head because of the daylight and I fell asleep in the end. Luckily my friend knocked at my door and woke me else I wouldn't have woken for my son coming home. I have had numbness in my left arm since Feb so not sure what is going on there. I do get painful pins and needles in the back of my head too but not when I get these headaches particularly. I dont think I have blood sugar problems though I have not been tested Bren. I get the headaches the same place as you too, from the top half and back of my head to the base of my skull and the whooshing noise but I do get the BP swings too. I used to get severe migraines - I would be projectile sick with them and my head would be so painful even to lay on a pillow. I tend to get the visual aura without the migraine nowadays. Just PM'd you Bren....

Hi I wonder if any of you can advise me please. I have had a headcahe on and off for nearly two weeks - more on then off mind. Tuesday night I could barely stand up as it was absolutely painful when I did and then faded after a while to a dull throb when I laid down. I also heard a whooshing of my blood in the back of my head with my heart beat. Wednesday I woke with a painful headache again, that subsided a bit for a few hours and came back last night. This morning, it was dull so I went out to the shops but came back home as it got real bad. I decided to get into bed as I felt nauseous and freezing cold and then my hearing came and went a few times, in the left ear - as if I was listening through headphones and the left earphone stopped working on and off. I have never had this before so am a bit concerned. I have been getting pains with certain pitches/noises for the past few months too so do not know if this is related. And the other night (saturday) I had, as what I can only describe as a 'funny turn'. I felt shaky, nauseuos, I could hear what my son was saying but the words made no sense, I felt irritable and I felt very odd in my head - but unwell odd - not a nice feeling at all. This lasted about 10/15 mins max and by that time I had got into bed. Thanks all

I get lots of headaches too. Last night was the worst one in ages. Every time I stood up my head was POUNDING with my heart beat and made me wince. I would lay down and it would start to fade. When I stood up again it would start again fully. It also hurts to cough when I get these headaches and I also get the whooshing noise with my heart beat. At one point I was getting these daily and found that they were my worst symptom. The pain is in the top/back of my head and neck. I have been getting lots of auras without migraine too - sometimes flashing lights (like fireworks someone else said on this thread) or I get a grey spot in my vision. Hate them

Looked up PT and it seems to be like that - it will coincide with my BP getting really high too lately. Litened to some of the sounds on whoosher too but couldn't find any like it yet - there are so many. Mine is not booming but rather a shhiiioooo shhiiioooo(haha but that is how it sounds!)sound with my pulse. I also read that too much salt in diet can cause it. It also says is can be accompanied by painful hearing which I have been getting too. Thanks Naomi

718, it freaked me out a bit when it was really loud. I haven't got insurance as I live in the UK and no cardiologist on board right now. What could it be though? I am not on any meds as am waiting for a visit to the NHNN in London to get all this sorted but unfortunately the waiting list is several months.

Hi Bella, I hope that all is well with you right now. Correct me if I am wrong but it seems you haven't got much support around you right now or that you loved ones don't quite understand what you are going through. I would jump at the chance if my Mum wanted to spend time with my young son - this is something that I think I will never hear her say. Bella, I do not really know you and have had replies on posts from you but I am sending you a huge round of hugs and virtual support and I hope you start to feel better in yourself real soon. I hope all goes well on Monday

Hi all I used to get a whooshing in one ear (sounded like the blood rushing through with my heart beat) if I laid on it at night but now I have noticed that I am getting a whooshing in time with my heart beat that comes from the back of my skull if I am standing and just going about my daily business. I get it when sitting too. It actually sounds like I am hearing blood pulsating through my vessels at the back of my head with the pump of my heart. It doesn't seem like it is in my ears but it is coming from the back of my head (if you can get what I am saying) even though I hear it in my ears. Any ideas anyone?? Just to add, it is not all the time but a lot of the time and is getting more frequent. It started about 2 months ago, maybe longer.