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anna

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Everything posted by anna

  1. Hello all, We are very new to the medication side of things and would be most gratefull of your input with regards to the use of Fludrocortisone. Our sons neurologist has suggested that he tries this medication to help stop his disabling dizzy spells, but we are not sure about this med. as it seems to have some nasty side effects. At the moment we have him on a high salt diet (well he has always from young craved salty food) so we have upped it his intake a bit and we get him to drink rehydration drinks when he seems to be getting bout of dizzy spells and we give him cinnarizine 15mg that helps reduce the dizziness. The main thing is our sons neuro. is leaving the NHS and will not be around to do any follow up appointments and our GP would need to refer our son back to the hospital to see a paediatric neurologist which seems to be a problem; the old neuro. is an adults neuro. who saw our son as a special case as he was seeing me with another condition we both have. Due to funding issues their seems to be a very long waiting list to see such a person. Our GP does not think our son has problems and thinks we are being silly so we are not too sure if we can rely on him for support. So we are not sure whether to try this medicine out. Ta Anna
  2. Thanks for the input cardiactec, our daughters peadiatrician with an 'interest' in cardiolagy has passed her back to her normal Pead. as he said her stress test was ok and her 24 hour holter monitor seems fine except for some flutters!! here and their, that he explained are like poeple get when they have too much coffee or such. Well bit odd too me as our daughter does not drink coffee, tea, coke etc. cos it makes her heart race. The 24 ECG was done on a good day with no real issues that day. I asked him if this could be an ANS thing and he said he did not know maybe I should could ask my sons neuro about it!!! I have requested a written report so I can take it to her GP to see what he thinks. Our daughter has EDS, so we thought it might be pooling issuses at work but she can get very bradycardic while sitting or lying, Dr.s just say she is young and fit she should be glad to have an athletic body but it makes her feel so out of it she says she hates felling so tierd and 'dippy' then when she stands too long her BP drops and her HR goes up and up, homones seem to play a big part in all this, she always has underline problems but it is much worse 2 weeks prier to her monthlys, or when she is ill etc. I think we need to find a Dr. that knows somthing about her electrical system!! Thanks again, Anna
  3. HI all, Now I am well confused, our daughter has bouts of both tachy and bradycaridia(sp). At one point some months age see went from 40 bpm resting up 170+ still sitting then droped back down to the 40is. This went on for some hours, she looked liked she had been on a rollercoaster the poor thing. A horrid time for her that her pead. just could not explain just said if it happens again get her to the A&E! She has been noted to have a slightly lowish sinus rhythm of 57 bpm and some partial right bundle branch block, but we are still waiting written report on her stress ECG and 24 hour holter moniter. Can one have pots with both bradycardia and tachycardia? Anna
  4. Hi, We have EDS and ANS on the same family line, one of my half brothers (sure he has EDS too but never investigated) has leasions on his brain his Dr.'s Q. whether he has Ms or something else as his symptoms are too advanced for the small number of leasions he has!! So we think this could be an EDS thing as our aunt had lots of small brain bleeds that, I guess in time must leave some scaring. Any way my dad had lots of back pain and very bad headachs most of his life one of his Dr.'s thinks that that might have been down to fluid leaking into his spine due to his connective tissues weakness. Bye for now, Anna
  5. Hello Willows, Sorry to find you have more to deal with, just wandering if you have ever been to see Professor Mathis? I hear he knows a lot about ANS and so on, Might he be of use to you? Anna
  6. Hello, Not sure if this is relevant, but my husband is from China and as far as I can see from the imput from his family, into our ANS dysfunction the condition is well know but has other names. Much of traditional chinese medicine treats the body as a whole, most of the traditional med. Dr's i have spoken to belive that conventinal medicine tends to treat one problem at a time, and does not see the knock on effect of such treatment on the whole body. It is my understanding (I'm just a mum) that many Dr's in China treat patiants with symptoms akin to POTS and OI. I and my daughter have tried some herbal pills that are given to people to increse blood volume it is a combination of plant extrates that have been used for centries to treat dizzyness, fatigue and cold limbs. Mother inlaw sends them over to use from Hong kong I am a bit reluctent to tell her that they are not right for us as they play havoc on our EDS guts (too many ulcers) but many people say they are very helpful. So I guess i am saying I think POTS etc. is world wide, but diffrent countries have their ways of dealing with it. I do think that environmental issues do have a big part on world health as a whole, there are many reasons why people become ill and I am sure environmental changes play their part. Bye for now, anna
  7. Hi Lynda, We will look into this thank you. Anna
  8. Hello All, I wander if someone might be able to explain why my daughter finds her heart races when she eats sweet food!? Our daughter has drops in her blood sugar while out and about so, when this happens she eats some ceral bars or alike, but then she gets quite tachy after this. This also happens when she eats anything that is quite sweet. Bye for now, Anna
  9. Stretch marks are one of the things our geneticist looked for when diagnosing our EDS, myself and my kids have stretch marks, the ones that seemed to be more of an issue were the horizontal ones on our lower back, we were told that this is a sign of faulty connective tissue.
  10. Hi all, I'm 43 had problems since I was a child my dad had ANS dysfunction till he died at 67 it has been an issue for genarations we just had no idea it had a name. Anna
  11. Hello danielvasel, Your English is better than mine and I live in England!!! Maybe you could write to or Email a DR. in the states and explain your situation, and ask if they have any litreture in Portuguese, it may help your parents to understand your problems if they can read something from a Dr. that knows their subject. Please take care, Anna
  12. HI Jacquie, I do not think you are alone with odd sleep issues. I have bouts of getting off to sleep for about 30mins then I half wake up, awear that my heart and breathing rates have gone array(sp) and that my body seems to be shaking then it wakes me up fully and I take a few hours before it all settels down and I get to sleep. I have found when I am like this it is is best for me to sleep upright. My daughter also has problems while asleep, waking up with a racing heart and breathlessness. Anna
  13. HI Ithomas521 The breathing thing happens mostly while awake; while going off to sleep she sometimes wakes up suddenly with thump in her chest then she gets tachy for a while and is breathless but she does not have to 'think' about her beathing. Myself our daughter and twin boys all have Ehlers-Danlos type 3 and various levels of ANS dysfunction sometimes it is difficult to know what is being caused by the EDS and what is being caused by the ANS issues. Thanks for your reply, Anna
  14. Hello All, I and family are quite new to all this ANS disfunction stuff (well had it all our lives but did not know what it was!!) and I wander if you kind folks might be able to help with a problem our daughter has been getting, more laterly; she finds that she has bouts were her body seems to forget to breath! She can be fine one minute then suddenly she has to remined herself how to breath!! Is this an ANS thing or maybe something else, I have had bouts of this myself but not as many as our daughter. Paed. just thinks we are mad! so not much help. You views would be much appriciated, Thanks Anna
  15. Hello Willows, Sorry to hear you are having these dizzy spells, could you have a bout of vertigo? I and my kids get dizzy a lot due to ANS disfunction but we also seem to be prone to bouts of vertigo my GP thinks its to do with lack of blood flow to our balance mechanisim(sp). Have you had a cold recently?! could it be a bout of viral vertigo? About a grant for chair lifts, have you been assest by a NHS or social services OT? My sister is an OT I can ask for her advice if you would like, I do know our social services here in East Devon seem to have to always juggule their finances to supply the care they are required to and funding does seem a bit odd at times. Hope you get sorted out soon. Take care, bye for now, Anna
  16. Hi Willows, Thanks for the words of encouregment (sp), glad you found relief at last! Ta ta for now, Anna
  17. HI Willows, Not sure if this will be of any help! I have found that my IBS got less of a problem when I went over to eating as much organic food as possible. All our staple food is organic, bread, veggies, etc. I no longer take any meds to help with IBS, I have also cut out milk which might have had somthing to do with it as well. I still have IBS but it is now manageble, no need to plan trips around the toilet! My dad found salads with lots of olive oil helped when he got bunnged up when on opiats (sp) a teaspoon of unfillterd extra virgin olive oil a couple of times a day seemed to do the trick! You might want to add some lemon to that as it can be quite a stronge taste! Hope you get some relief soon. Bye for now, Anna
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