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Thread: Important - dysautonomia awareness

  1. #1
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    Important - dysautonomia awareness

    Hello everyone , some of you may remember me from years ago.
    I have come back to tell you about something amazing
    thats happened to me.
    For 7 years I suffered severe panic attacks and dizziness, my life was hell.
    Every doctor I had seen said anxiety !
    I then went to ENT and they said - Migraine associated vertigo.

    Then 3 months ago , I was lucky to get reffered to a neurologist,
    who took my blood pressure ( like all the other doctors did)
    but this time she caught my blood pressure bottom out when I stood up.
    She diagnosed me with Orthostatic Hypotention/Dysautonomia.

    She told me what happens in this condition ....

    My blood pressure drops severly when stressed (which makes me dizzy), because my automatic nervous system has mal functioned. So my body throws out lots of adrenalin in an attempt to raise my blood pressure.
    This makes me feel panicky and anxious and dizzy.
    __________________

  2. #2
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    Re: Important - dysautonomia awareness

    some reading on the subject

    http://www.associatedcontent.com/art...mia.html?cat=5

    I really hope I can help others by posting this information and wonder why had I not heard of it before ?
    I am certain that there must be lots of people on here who have this condition yet dont know it. Doctors are not aware of this condition and thats what makes me angry. My neurologist has phoned my doctors and had words with them , suddenly my doctors are very very nice to me !!!

    I am now waiting to be reffered to a blood pressure specialist and will be put on steriods .
    __________________

  3. #3
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    Re: Important - dysautonomia awareness

    Hi Mirry,
    so pleased for you that you have found the answer / reason for your problems. I came on here today to search under dysautonomia as this is something that I've been aware of for some time (due to googling symptoms in the past!). I feel that I might suffer from this at times as I get the light headed / swimmy head sensation, racing heart especially when getting up in the morning & in the shower, getting out of a bath etc & I have also had CFS with it's associated weakness, breathlessness, fatigue, exercise intolerance etc so I think you're right saying that there could be a lot of people out there with these kinds of symptoms who actually have this.
    I did notice that when my CFS was at it's worst & I was at my most anxious that my blood pressure would be quite low but the doctors were never concerned about that & no-one took it when I stood up.
    I'm not sure what the causes are but I know that on the Heart Palpitations forum RLR often mentions people suffering from 'mild dysautonomia' triggered by anxiety / stress so maybe it's abit 'chicken & egg'. There are probably many causes.
    Anyway, thanks for sharing this, I might ask my doctor about it next time I go!
    All the very best Mirry & I hope you're soon feeling much better!
    Love Seffie x

  4. #4
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    Re: Important - dysautonomia awareness

    I hope you find some answers too , Dysautonomia has a cause.

    I was hoping this post gets alot more attention than it has , this information could help alot of people, I am absolutely amazed that no one told me about this condition sooner.

    I would say to everyone , if you get dizzy and anxiety please get your blood pressure checked sitting down , then stand and have it checked for 20 mins - until it drops !

    Here are some flash points about Dysautonomia ....

    Do You Have Any Of These Symptoms?

    Loss of Balance, Unsteady Walking
    Frequent and Vague Aches and Pains
    Faintness, Syncope
    Fatigue, Malaise
    Severe Anxiety Attack, Panic Attacks
    Hypotension
    Bradycardia, Tachycardia, Palpatations
    Poor Exercise Tolerance
    GI symptoms i.e. IBS, Bloating, Cramping
    Sweating, Skin Color Changes
    Dizziness, Lightheadedness
    Blurred Vision
    Numbness or Tingling
    Depression
    Frequent Urination
    Intolerance to Heat
    Sexual Dysfunction -both sexes

    Are You Diagnosed With?

    Chronic Fatigue Syndrome
    Mitral Valve Prolapse
    Vasovagal Syncope
    Neurocardiogenic Syncope
    Panic Attacks/Anxiety Disorder
    Inappropriate Sinus Tachycardia (IST)
    Irritable Bowel Syndrome (IBS)
    Postural Orthostatic Tachycardia Syndrome (POTS)
    Fibromyalgia
    ADD/ADHD
    Diabetes Mellitus
    Peripheral Vascular Disease
    Coronary Artery Disease
    Inflammation/Inflammatory Reactions
    Reflex Sympathetic Dystrophy
    Alcoholism

    Have You Had Any Of These Experiences?

    Family History of Stress
    Post Viral Illness
    Exposure to Chemicals or Toxins
    Exposure to Trauma, Especially Head or Chest
    Breast Implant Surgery
    Stress- Emotional or Physical
    Severe Illnesses
    Job Stress
    Family Problems
    Buying or Building a Home
    Childbirth
    Move Across Country or State
    Going off To College
    Used OTC Cold or Sinus Medications
    Caffeine Use
    Deconditioning- Prolonged Bed Rest




    You Have may have DYSAUTONOMIA

    Autonomic Nervous System Dysfunction

    ‘An Imbalance In The ANS’
    __________________

  5. #5
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    Re: Important - dysautonomia awareness

    The ANS controls virtually all of the unconscious body functions and systems:

    BP, HR, Temperature, Breathing, Sweating, Bowel Function, Sleep Patterns


    A balance between the 2 branches of the ANS Is essential for good health!


    Your ANS functions to sustain your life by controlling your:

    Heart, Lung BP, HR, TEMP, RR Immune System
    Fluid Balance Pupil Dilation/Constriction Certain Reflexes
    Sweating Digestion System Sexual Function



    ANS=SYMPATHETIC and PARASYMPATHIC

    SYMPATHETIC

    Fight, Flight or Fright Fear, Extreme Physical Activity
    Increases HR, BP, RR Generates Energy
    Increases Blood flow to fight or flight muscles Stressed, Ill, Injured
    Stressful exposure or physical trauma Scar tissue, Anxiety
    Stress, Chronic illness, Infection Biomechanical strain
    Increases, accelerates body functions Dilates pupils and bronchioles
    Inhibits urination and bowel function Immune and Inflammation


    PARASYMPATHIC

    Rest, Relax, Renew Decreases HR, BP
    Get the body ready for rest Sleeping, recovering from illness or injury
    Quiet functions i.e. digestion Vagus Nerve
    Directs blood to skin and GI tract Restores urination
    Stimulates salivary secretions Restores peristaltic function
    Constricts pupils and bronchioles Slow down, relax
    Put the brakes on body function



    You can be Helped.
    There is a Reason.
    There is Hope.
    There is a Cure!



    Symptoms of ANS Dysfunction are Physiological Not Psychological !!


    All Your Symptoms Are Real
    and
    Can Make Anyone Feel Crazy
    But
    Are Not Caused By Craziness !
    __________________

  6. #6
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    Re: Important - dysautonomia awareness

    seffie , even if you talk to your doctor be prepared, because they do not know about this condition (as my gp admits). But demand to be taken seriously.
    A neurologist can diagnose you.

    Alot of the things you mention I have .... getting out of the bath makes me ill , I shake and feel breathless. When my blood pressure drops I get hot and sweaty
    and then feel panicky shakey & dizzy. It feels like I am going to pass out.
    Last June I actually did pass out.

    The treatment they have given me so far to raise the blood pressure is ...

    I have to wear compression stockings
    I have to put salt on all my meals
    I have to drink lots and lots of fluid
    I have to take ibuprofen before I go shopping

    all these things raise my blood pressure.
    However it doesnt always help , so now they are putting me on a steroid to raise the blood pressure.
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  7. #7
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    Re: Important - dysautonomia awareness

    Hi Mirry

    Thank you for the link, I WILL go and have a good read.

    I have had low blood presure ALL my life, with some symptoms. Sometimes, NOT all the time, it does'nt take much for it to drop to far AND THEN the floor looks very inviting. I DO have to lay down, other wise, my mind will do it for me.

    This thread has got me thinking now, in a good way, I will look into this a little more.

    A good few things you have written, this could be me, Mmmm

    I AM panic, high anxiety free and I feel that it was this great site that helped me, BUT, there are still some symptoms which I have had all my life, they still come and go, BUT, do not bother me, Mmm, well not much anyway, I feel I've just learnd to live with them, but since learning alot about panic, anxiety, I do feel, that the symptoms I had before panic, high levels of anxiety are still there, but to a leser degree, do you know what I mean?

    Like you said, getting out of the bath, now this does not happen to me all the time, but it can happen. Even before getting out of the bath, I feel like someone has took ALL my energy away and find it very had getting out of the bath and when I get out, I HAVE TO go and lay down, till it passes. I have put this down to my blood presure dropping.

    Also. being pulled to one side, this also does not happen often, under stress. I proved this to myself one day in monkey forest, I got into the cages with the monkey felt a little scared,AND boom, theres me, looking like I had drunk a bottle of vodka LOL I can laugh this symtpom off. Came out the the cage, felt fine, went back in and it came back again LOL I do have other symptoms, but will not go into that.

    Thanks again for you link Mirry. It has been very helpfull. The tmes I have my blood presure checked all that was said at that time was "oh, its a bit low" I never even thought that it may have a link to some of the symptoms I get apart from in the bath and me wanting to hit the deckLOL

    I do have a monitor myself, I bought it for hubby really, but do check mine sometimes, we do make a joke of it, my hubbys can be 140 (he has high blood presure ) mine has been as low has 79 (ohhh I'm dead LOL )

    I do have some reading up to do regarding this, before I go see a gp. I can google and read things with an open mind, so will see if I can link things in to this dysautonomia.

    Can you please keep this thread going mirry and tell us how you get on, I am sooo pleased that you have found your answers. I always say, keep looking keep searching and one day, YOU WILL find your answers.

    I have found mine NMP and NO high levels of axe, just maybe this dysautonomia will be my final answer.

    THANKS AGAIN

    LOVE JILL XXX
    __________________
    Fear is the darkroom
    where negatives are developed.....

    ------------------------------------------

    "Every thought you think changes your
    biochemistry.
    Your hormones are effected by your
    thoughts.
    Pay attention to stuff that bring you
    joy.
    Look for things that bring you a
    SMILE"

    ---------------------------------

  8. #8
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    Re: Important - dysautonomia awareness

    Jill , a 79 blood pressure is very low and would cause symptoms.

    My doctors did not tell me until last month that they once recorded mine as 70/50. Yet they still didnt check me for orthostatic hypotention .

    However , you can do a good check on yourself , its called a
    poor mans tilt test. Basically get a good blood pressure machine.
    take your blood pressure laying down, 3 times over 10 mins.

    Then stand , and after 2 mins take it.
    Then take it 5 mins later.
    Then 10 mins later.

    If it drops more than 25 on the top number. You have orthostatic Hypotension. (I forget what the bottom number should drop by ).

    what you must remember is , this may not happen EVERY TIME.
    Its a case of catching it happen.

    I have been doing this and the other day it was 108/68 laying down.
    and 72/52 standing up.
    ------------------------------------------------
    I am pleased your going to look into it further , If I can help just one person with what I have been through then It will of been worth it.

    I know people can be weary of reading about cures posted by other people on the internet , But this is not a cure as it cannot be cured ,
    but it can be managed.
    Last edited by mirry; 01-04-10 at 22:18.
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  9. #9
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    Re: Important - dysautonomia awareness

    Hi Mirry

    ***I know people can be weary of reading about cures posted by other people on the internet , But this is not a cure as it cannot be cured ,
    but it can be managed***

    As I said Mirry, I am panic, high anxiety free, If my symptoms are this what you have written, I will learn how to manege it, if its anxiety, then I manege it anyway, SO, a win, win, YES

    As far as my own reasearch has gone, the only thing I have come up with is that I was born sensitive, Mmm, ??? so for me, this is well worth looking into.

    I will do my blood presure over the next few days and let you know how I get on.

    Many thanks

    LOVE JILL XXXX
    __________________
    Fear is the darkroom
    where negatives are developed.....

    ------------------------------------------

    "Every thought you think changes your
    biochemistry.
    Your hormones are effected by your
    thoughts.
    Pay attention to stuff that bring you
    joy.
    Look for things that bring you a
    SMILE"

    ---------------------------------

  10. #10
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    Re: Important - dysautonomia awareness

    Hi Mirry,

    Very interesting post. How have you been getting on? how do you cope with this, have you started the steroids yet? Its funny that the meds I am on for anxiety have caused me to have slight OH as a side effect, so maybe they are doing me more harm than good?!!

    thanks.
    Last edited by daydreamer; 09-06-10 at 11:43.

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