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Everything posted by miranda

  1. I have Orthostatic hypotention and neurocardiogenic syncope . Lately my blood pressure is up in general, due to taking meds. However Im still am feeling bad , dizzy often& faint. I just took my blood pressure whilst standing up ....first it was normal, then i went really swimmy headed and felt a tingling in my hands I pressed the button but it said ERROR. I am notising my machine says this when I go really faint feeling. When i looked at my hands they were a purple colour, so was that pooling in my hands ? Do others get tingling along with the pooling ?
  2. I am actually taking Nutri adrenal Extra (as advised by Dr Peatfield), and this is what has raised my blood pressure It used to be really low , 70s/50s but now its in normal range. Yet I still feel symptomatic which is puzzling me. Shops are my trigger , if I join a que .... my heart goes so fast its unbelievable , this happens for about 15 seconds and then I feel it stop in my chest and I go faint (or actually faint). Or sometimes I get a sudden hard THUMP in my chest and nearly faint and then loose my balance and cant walk for an hour.... leaves me feeling drunk. I also feel jittery. The
  3. I was diagnosed by my neurologist with orthostatic hypotention a few years ago. She told me I cant cure it but I can control it. So every day i have salt on everything and my blood pressure is alot better most of the time. BUT I still have neurocardiogenic syncope in stressful situations , and whilst in shop lines. So , is it possible to have normal blood pressure but still have neurocardiogenic syncope ? Also , my pulse jumps up when I stand up .... this morning it jumped up 26 beats from sitting to standing. I am aware this is not POTS , but could it be why i feel a tremor alot when standin
  4. Thanks for the list of meds to try. My doctor cant prescribe alot of them (so he tells me). I was never referred to a specialist, my neuro told me I would have this for life and said if I dont tolerate the drugs my doctorcan send me to one. But my doctor seems to not want me to do this. What confuses me is this ... every day i take my blood pressure in the morning and its alot better since ive been salting and watering. But I still get lots of weird moments through the day. I get nervous paying for things in shops (cos ive fainted doing this) and it triggers a vaso vagal responce. I cant stop
  5. A few years ago my neuro told me I have orthostatic hypotention. I went to her because I kept nearly passing out when shopping and out and about. I was given a steriod to try which gave me a headache. And then a srri which made me feel bad. Doctors say they exhasusted all avenues. But I still feel ill. Someof my symptoms I just dont understand , and they scare me so much. I have what feels like a nervous breakdown when stressed that then turns into a faint. when i am out walking I get a headache, then I get a thump in my chest and go all dizzy and unbalanced and get a pulsating in my head,and
  6. Thanks everyone, I have been reading about it seems its a nervous system problem - sigh .
  7. Have orthostatic hypotention & NMH , of no known cause. A few months diagnosed with gum disease. Yesturday diagnosed with fIBROMYALGIA cos I woke up and couldnt move my arms or hands due to wide spread pain all over my body. They took my bloods to see what it shows. Is there any connection ?
  8. Hi , as some of you may remember I have severe NMH and orthostatic hypotention. However , recently I found out I have gum disease that was not visable to the naked eye and only showed itself on xrays. It has eaten away at my bones under the gums. So I have been having treatment for this , and my dentist tells me the diseases is now more under control. So I continue take my salt tablet and fluids , and I am surprised that my BP readings are doing alot better, they are on average 112/76 and only sometimes do I find them in the 90's/60's. This is a huge improvement for me because I was often si
  9. I have to have another shot on the 20th and feel terrified at the thought , I was told I would have one without the adrenalin in it , but now I read that can still cause problems I feel very worried. Maybe I should take some propranalol before I go , has anyone done this ?
  10. I went to the dentist today and was given a shot to numb my mouth and then suddenly my heart rate went crazy and I came over faint and they had to tip the bed so my head was near the floor and my feet were in the air. I think I passed out cos suddenly there were nurses in the room taking my pulse and asking me how I felt, I said " I feel sick". When I recovered I was told that my heart went too fast and I cant have that injection again because it contains adrenalin . I managed to speak to my doctor in the week and she was really interested in the connective tissue idea , she said she will loo
  11. Reen I am hypermobile and have scoliosis of the spine. Another thing I read about the disease is it can be caused by hormones. I am 42 years old and my bloods showed a year ago I was in the change. So I wonder if hormones trigger the connective tissue to wear away in the gums , then why wouldnt it do the same thing to different places of the body? So maybe get control of the hormones and everything will calm down ? Thanks for the links Nowwhat.
  12. Ok some I was diagnosed with orthostatic problems one year ago. Last week I was diagnosed with gum disease. I found out these two things can be caused by connective tissue disorder. This week I have been diagnosed with a Mucous cyct on my finger.... so just read up on it and it says this ........ Doctors also don't understand exactly how these cysts form. One theory suggests that mucous cysts are formed when connective tissue degenerates (wears away). Collagen is a protein found in connective tissue. The leftover collagen is thought to collect in pools, and the pools form cysts. Fluid seems to
  13. Thanks Julie , I feel I may be onto something here ,,, my dads sister (my auntie) died from a subrachnoid hemorage and she had scoliosis. Both my dads aunties and his great grandmother died from hemorage too. His cousin also has scoliosis. My great grandmother had something wrong with her , both her legs bowed outwards but we think it must of been rickets ? When I was a kid I used to be able to do the splits and put my legs around my head no problem, I also used to always sprain both my ankles easily and still do. When I went to have a verucha removed from my foot, the doctor said wow you f
  14. Thank you for the replys , it means alot to me . Today I spoke to my gp on the phone and he was really interested in me now having gum disease. He wants to see me to discuss it further. So I look up EDS , and I tick alot of the boxes, please tell me what you think of this ..... my fingers and toes can bend right back , (most of my family have this) and my daughter can bend her arms inside out. I have scoliosis , OI , and gum disease. How should I go about discussing this with my doctor ?
  15. I have done so much reading on the subject and can not recall where I read it ? but it was this week and I will try to find it again. Thats facinating Mack's mom , do you know where I can find info on gum disease and connective tissue disorders please , it sounds interesting and maybe relevant. Thank you x
  16. oh wow thank you , I will certainly look more into this. I had some bad news today , I went to my dentist and got told I have gum disease , it was a shock because I have no bad teeth and my gums look fine, but I had pain when I ate, the xrays showed the disease. My dentist said I shouldnt have this disease because I dont smoke and he can see I look after my teeth very well, he said there is a connection to diabetes in some people and wondered If I have any insulin problems !!!
  17. I have OI , however lately I am notising if I eat sugar I feel shakey and anxious half an hour later. Then last night we went to the gym (trying to strengthen my legs) and at the end of my workout I came over really ill, shakey and faint. My husband was with me and he got me to lay down and lift my legs, usually I will improve doing this. However I got worse and worse and could not stand up , this went on for 20 mins. My husband got me some sugar and after consuming it , 10 mins later I could stand up and felt alot better (but still weak). This got me thinking I must have hypoglycemia , so I
  18. Hope your feeling better today Johnathan, let us know how you get on.
  19. Johnathan , I met a girl on another forum and all her symptoms were like ours , she didnt know what was wrong with her (but I knew from her description). She made a appointment with her gp who then tested her standing blood pressure and heart rate, he then agreed she had orthostatic problems and sent her to prof mathias. She waited 8 weeks to see him which I thought was really impressive , her appointment was 2 weeks ago. So push to see him .
  20. Jonathan, I totally understand where you are coming from and feel the same way. Have you spoke to anyone else in Ireland with this condition to compare notes ? I am in England and my doctor is going to refer me to prof mathias in London soon, can you get to see him ?
  21. Thank you for the replies , makes sence when you put it like that.
  22. The past few weeks when I have tested my blood pressure I have notised that I dont have big drops when I stand up . I am pleased but confused because I still feel ill on and off and have near vasovagal episodes alot through the day when stressed. so have I controlled my orthostatic hypotention but not the vasovagal which gives only sudden drops when stressed ? I am really confused.
  23. My son is under the acute allergy clinic for anaphylaxis to mutiple foods , he also has autism. I have OI. My uncle has celiacs disease. really interesting.
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