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louloutinks

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Everything posted by louloutinks

  1. I am wondering if this has anything to do with autonomic dysfunction but I have noticed that I get genital 'arousal' for a few moments for no reason (blush). I could be doing washing up or something of the like and it starts and then just stops by itself a few moments later. Thats about it - am off due to embarrassment now!
  2. Hey Bren, long time no speak I remember you said you had csf leak and this numbness of the face can be a symptom of it. I have been doing loads of reading on the subject lately as I went to A and E and they mentioned CSF pressure and I will be seeing a neuro next week because of what has been going on. Are you sure you haven't started leaking again? Hope you can find out what is going on - is the numbness constant or intermittent? I would hang on in there and hope you find an answer real soon x x
  3. Did your doc mention to you the vascular type as you mention aneurysm? It is mainly the hypermobile type (EDS3/EDSH) that is prone to POTS.It is mostly not fatal but a minute percent there maybe issues with vessels in the brain (thye checked mine the other week due to headaches) and all was well. There also can be an overlap of some of the symptoms from the other types mixed in and it is not always 'cut and shut' to the profiles. EDS3 causes me lots of subluxes, joint pain and easy tiring. I have EDS3 but I also have marfan habitus. Are you being referred to someone to get it checked out? How flexible are you - very..as in most joints or just one or two?
  4. Just typed the whole lot out and my pc turned off for an update!! Dizziness near/syncope (obviously!) Tachy esp on standing High and low BP swings Narrow pulse pressures Positional headaches that are excruciating (standing or sitting) Pins and needles in legs,feet and scalp Constant pins and needles in left hand and numbness of left foot Weak arms and legs Tinnitus - ringing, hissing, thumping Hyperacusis (painful hearing) Whooshing sound of pulse in back of head that drives me to insanity as it gets so loud Muffled hearing (intermittent hearing loss with headaches) Head pressure Stiff neck and pain Ehlers danlos - lots of joints pains/subluxes and easy tiring of muscles etc Petechiae Blood pooling in legs Livedo reticulris Flushing Rashes and hives Poor temp regulation Constipation IBS Urinary urgency Urinary excess esp at night Adrenaline surges (like when you have to slam your car brakes on to narrowly miss a car!) Vertigo Spacey feeling - disequilibrium? where my eyes play catch up No sense of smell then hypersensitive and smell things that make me feel nauseous Cognitive issues - word recall, memory etc Restless legs syndrome Arm tremors. Hands tremor with movement Nausea and vomiting Good thread idea IDIC.....
  5. I get narrow pulse readings like this too - I read on here that it can be part of pots
  6. My resting rate is between 65 and 95. On standing it goes between 130 to 150 (the other day it went to 176 after a resting rate of 92). In the mornings when I walk up stairs it is between 145 to 185. At night walking up stairs it goes between 130 to 145 (why the difference between morning and night I do not know) With a holter my sleep rate was 50. I often take my BP/HR before I move to even get out of bed and once it was 180 which was a surprise. I wear a heart rate watch and if I am out shopping or something like that my HR is often in the 200's. Ridiculously high numbers at times.
  7. Hi Bren Hope you are well. Just thought that I would add that I have had this many times but I do not know what it is. If it is the same thing that is - but the way it feels to me is almost like I have burned my skin like an open wound burn and just the slightest touch can be painful. I had it on the back of my upper legs and it was extremely painful just to sit on a toilet seat (sorry TMI!). I had it on the back of my legs on and off for a long time. Since then I have had it on my stomach/ribs and also on my lower back/bottom which went round to the front of my hip. Bedclothes or sheets would make my skin feel almost 'sore'. It would be good to get an answer to it.
  8. thank you for the links sugartwin. I was on a site regarding types of headaches today and the csf headache did describe my headache best, especially with positional and also hearing issues. It also stated that it can cause tingling in arms which I do have but not sure if it is related. I suppose I shall just have to wait and see what is going on but I hope it gets sorted pretty soon.
  9. Hi and thanks for replying. They ruled out anything vascular with the CT but they were talking about pressure - would this be CSF? Surely this would have shown on the CT if it was that? There is definitely something going on and things are getting worse not better. It seems that I am getting more things going on each time I get these headaches and ear problems. Anna, thanks for the info. My headaches get instantly worse with sitting and are excruciating. They do get worse on standing but ease after a while. And they tend to go dull when I lie down. I have EDS with marfan habitus so would that be relevant? I do have migraines but this is different. Since March I have had progressive worsening of ringing, hissing, head pressure, positional headaches, arm numbness, neck and shoulder pain etc etc I have looked at Dinet and it does not seem to fit autonomic dysfunction.
  10. You can see her on you tube and she has a website called prettyill.com (not sure if I can put a link up) but she seems to make a lot of sense. Issie, it would be interesting to see what your doc makes of it. Sorry Anna jsut spotted your link!
  11. Hi just a bit of advice needed really as I am wondering if all this is due to autonomic system. Had another horrendous headache yesterday and it was absolute agony if I sat down, better when I lay down after a while but seemed to go when I stood up for some time. I crouched down to feed the cat and had an awful pressure from my shoulders into my neck,ears and head. I had this the day before too and it made my hearing muffled. i have been getting ringing, hissing, popping, uncomfortable hearing and hearing loss a couple weeks back with headache. I was concerned about my hearing and this pressure. I had a good lay down and some pain killers. Later on though I decided to call the docs as I had a pressure on the left side of my head that I have never had before and it felt as though someone had there hand over the side of my head, face and eye. pushing really hard. So I called the GP and they asked me a few Q's and I told them I had a grey spot in my right eye only the day before and that the left side of my mouth had been spasming. They told me to go to A and E so I did. They done a neuro exam and my three toes on the right side flared out when they run something up my foot (which I thought was abnormal?) and everything was ok. They said with my EDS and marfan habitus they wanted to rule out any vessel problems in my head and done a CT without contrast (I was thinking more of a trapped nerve issue going on so got concerned!) which thankfully came back ok. I asked them what it could all be and the doctor said she would like to know herself. She is writing to my GP and is strongly recommending an MRI and an ENT. I asked her if it could be autonomic and she said not all of it. She said the headaches could be due to EDS. If the CT scan picked up nothing and the neuro exam was ok, then what could an MRI show. I previously had a brachial plexus MRI which showed no compression, as they thought I had thoracic outlet syndrome. I had a cervical MRI which showed minimal bone spurs and now a CT which showed nothing. I just feel at a loss as something is going on but nothing is showing on anything so that is why I am wondering if it is ANS playing up. I feel like I am just wasting the resources.
  12. I get this too. Feels like my eyes are trying to play catch up! I have flashing neon lights (the way I describe it is like Windows media player visuals - alchemy), esp if I am in a dull light or I close my eyes. Had tunnel vision only on one occasion. Sometimes I find it hard to read in a straight line as it feels my eyes jump up and down the page. Get blurring out of vision too.
  13. I woke up a while ago and took BP 108/72 89hr, got out of bed and felt really wobbly. Took my BP was 99/80 150hr. Went to walk down the stairs and I felt like I was drunk - the stairs seemed really close (Alice in Wonderland feeling), felt shaky and head spinning - but not vertigo. Felt really unsteady like I had had too much to drink. Even now my brain is finding this very hard to type and am making countless mistakes and have to keep rectifying things.Feel very thick headed. I have had this one or two times before but was is this. Walked back upstairs, feeling shallow breathed and hunched over, I took my BP it was 101/72 hr165. My hands were VERY blotchy. Shoulder and neck pain/stiffness this morning too. My HR's in the morning are always quite high just for getting out of bed and stairs are worst in the morning. What causes this drunk feeling and does anyone else get this upon waking? Must add that the past few months I have been getting lots of hearing problems - hyperaccusis (certain noise hurts ears), muffled hearing, going deaf with awful headaches, tinnitus (both rining and hissing),whooshing in base of skull etc.......not sure if this is all related? I still feel 'odd' now.
  14. Funny you should say that re exercise intolerance. My son gets very worn out quickly and breathless too which I put down to his mitral valve and regurgitation. He gets a lot of headaches and has done so for the past few years. He has always had severe constipation and in between he gets diarrhoea - these poops almost look like IBS (if you know what I mean, thin strips and floaty). Thing is, we are in the UK so I would not know where to start. His BP etc today was 92/63 hr61 then standing it was 102/66 hr 90 - so not quite over the 30 rise. Should I keep a record of his BP's and then if it carries on take him to my local GP? He also suffers with severe anxiety but then I put this down to his autism too.
  15. I posted a week or so ago about my 9 yr old son saying he went 'blind'. He, like my family and me has EDS. I have pots too. The other day, when he was at home, he said he couldn't see and I noticed he had stood up, so I took his BP. I noticed that his heart rate rose immediately by 34. I have checked it again since and it rose again. Is this usual in a 9 year old or could it be pots? What should I do?
  16. Hi Miss, not that I know of. I know they can do TTT at usual hospitals but it would be worth a trip to NNH at Queens Square. Have you got a dx yet?
  17. Well we got to the doctors and they are sending him to an orthotist (yay at last - have been waiting years!) for insoles. I told the doctor what my son had told me so the doc said to my son 'I hear you have a problem with your eyes' and my son said 'no' (can't kids make you feel daft). He then said 'oh yes they go black'. The doc asked him to tell him what happened, so my son looked around the docs office, grabbed some books and shut his eyes and walked into the wall very dramatically. I could feel myself going very red by this point! He then told the doc it happens about 5 seconds each time (he told me up to 20!). The doc told him to focus on a lamp whilst he looked in his eyes with a torch, so as the doc looked in his eyes his head got in the view of the lamp so my son was bending down and moving about to still 'focus on the lamp' lol (he is autistic so is very literal). The doc is now going to refer him to a paediatrician for the absences but didn't mention the eyes! I questioned my son this morning about it and he seems adamant it happened (but I think not as often as he first said). So I am just going to sit on it and wait and see if it happens again.
  18. I was reading about optic neuritis and this can cause greying of colours and it can be seen with EDS. It also has something to do with an immune response - which made me think (veer off on a tangent) - he has a halo nevus which the doc said that this is because his immune system is attacking itself so do you think this could be of any relevance. KCMOM, that is exactly what my son gets - just freezes in position like a statue even when standing. He gets very tearful and confused afterwards too. I have booked a double appointment as I need to talk about physio and insoles/vision and something else so we will see what happens later. He just seems a bit young to have this type of problem. He has got prolapsed mitral valve because the EDS so I suppose it could affect his vision too.
  19. Hi all my 9 yr old son has ehlers danlos like me, so I feel a bit concerned as he told me on Friday that he 'went blind and then saw everything in black and white'. I asked him how many times it's happened and he said it is 'not that many times' maybe once a month. I asked how long it lasted and he said 'sometimes it lasts up to 20 seconds and sometimes I get them at different times' meaning that he loses vision OR sees in B/W. Not sure what is happening so has anyone got any ideas? I am going to take him to the doc. I know with EDS there can be eye problems but not sure what this is. He has also been having absences again - he had these when he was younger and had a sleep EEG but all was ok. Thanks in advance, Lou
  20. I thought this was normal! I have had this since my teens (in my forties now ). My whole body will sway with my pounding heart beat or my head rocks when I am sitting up. The bed will move too if I am laying down.
  21. In November last year before I was told I had autonomic issues i saw a cardiologist with the results of a 24 hr monitor. When my HR and BP was taken by the nurse before I saw the doc, the nurse looked surprised as my HR went from 74 to 128 on standing and asked me if this always happened (my BP dropped as well). I said it did. My mum got worried as she saw the look on his face. When we went in to see the cardiologist, he did not mention pots, asked me if I drunk coffee - if so cut it out and told me to have more salt and water. Very abrupt and rude and said I was all fine. I told him the day of the monitor, I had a relaxing day at home and that I was not asked to record my activities. He said that my HR was fine. In the report, nothing was mentioned about the change in HR/BP whilst at hospital. It did mention that my lowest HR was 55 and my max was 168 (if I remember correctly) and that the holter showed just a few PVC's and APB's (?sp).
  22. O negative rhd (whatever that part means). Can I ask the O negative people if they are often anaemic? In our family, me, my son, my sisters and my mum have a hard time holding onto iron and are often anaemic and on supplements.
  23. Hi Naomi I have wondered if it could be linked. I actually started with dischidrotic eczema on palms and soles, then I acquired lovely perioral and periocular dermatitis . Before this, my skin was absolutley fine. Then all the potsy symptoms started to raise their ugly heads lol. Coincidence maybe??
  24. Hi Naomi, I really can see that my symptoms do seem like CSF leak but I am trying to find other possibilites too. What with my EDS as well but am trying to be logical and err on side of caution. I have had sinus years ago but I got a horrible taste rather than salty but hey things can change. Another strange thing I have noticed, this morning when I stood up, my head was really painful, then eased but I nipped to the toilet and when I sat down, the pain got really bad. Stood up, it was ok but then when I sat down again it started - the complete opposite of the other day. It lasted about 45 mins then stopped completely (thankfully). Something is odd I know.
  25. Hi Naomi and Bren.....I was in bed until about 1pm yesterday after my son went to school at 8am. If it is a CSF leak then surely it would be all day everyday. Mine tend to come in batches to be honest so do not know if that would be CSF. The last batch lasted 12 days or so but yesterdays HA came and went after a few hours. Maybe I am getting sinus with the salty taste. But the vomiting is worrying when I brush my teeth - it is instant and projectile (maybe because I am sick it makes my nose run?). Today I brushed my teeth and felt like I was going to be sick so I had to stop brushing and had to keep swallowing to try to stop the sick feeling. I felt ok today as I had no headache (the usual dizzy potsy stuff still) but whilst at work, I had the most awful pain shoot from inside my neck to the top of my skull and I had to stop and lean on a table until it stopped after 30 secs. I have never had that. I have often had pains shoot from the top of my skull into my head - like icepick headache but never from inside the back of my neck. Apart from that all has been ok today. Should I tell my GP about the vomiting with brushing? I feel they do not know much about anything other than coughs and colds - last week when I went he said they could be tension headaches (I do not think so but maybe I am wrong) but not with losing my hearing last week and other odd things. Maybe it is autonomic dysfunction affecting various things all at once. Hope all is well with you Bren? I have asked to be put on the cancellation list at the Neuro hosp in London else I will be waiting for months so I may be able to get an appintment in a couple months
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