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u2star

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  2. PARANOID!!

    in Dysautonomia Discussion

    Posted

    I can sympathize with you. I have just recently had a flare (same symptoms) except I was driving somewhere at the time. I never thought I would make it back home. I am really afraid I am going to get worse.

    I have had extreme anxiety and depression because I don't want to feel like I did last year at this time when I had a recurrance. Hang in there. Email me anytime.

    Diane

  3. Difficult situation

    in Dysautonomia Discussion

    Posted

    Dear friends,

    I hate to post this right before the holidays -- I just felt like I needed to talk out a situation that I ran into the day before yesterday.  I guess it's sort of a hybrid of a musing, a venting, and a plea for advice.  :ph34r:  :) 

    I was not feeling very well at all, but wanted to make an effort at some short shopping for Christmas presents.  While I was at one store, I almost bumped into a girl I used to dance with -- she didn't see me, though.  She's very sweet and I wanted so much to go up to her and say hi and catch up on what she's been up to, but, I'm rather ashamed to say, I didn't.  I know it sounds pathetic, but I actually HID behind a column in the store as she walked past and then skulked around behind store displays until she left the store.  :blink:  :(  It was a moment that I had been dreading...the first time I ran into someone from my "former life."

    I'm absolutely mortified by my behaviour, but at the same time, I just didn't know what else to do.  As soon as I saw her standing there looking so very tall and thin and like the very successful dancer she is, everything that I've struggled with these last nine months engulfed me...not getting to laugh through mishaps with friends at rehearsals, no pre-performance excitement while applying make-up and donning exquisitely beautiful tutus and tiaras, the aching muscles from not being able to take class, missing the exhilaration of flying through the air as the music swells and crescendos, having difficulty walking around let alone dreamily walzing and foxtrotting around the floor at midnight, never running to catch the subway to get to my next class, having to pack away the size 4 pants until I can excercise to get myself back into shape (yes, I know it's vanity :)).... I could see it all for a moment, could feel it all again as if it were real. 

    Everything inside me rebelled at the idea of asking Emily what was going on in her life, knowing that the dreaded question would soon arise..."And so what are you doing these days?"  How could I explain to her in the middle of the bustle and shoving of a crowded Barnes & Noble that a great deal of my life has been turned upside down?  One does not simply shout over the surrounding noise that all one's dreams have been shattered...that life these days is regrouping from that sorrow and forging a new path, embracing the simple triumphs of the day such as doing dishes or getting a bowl out of the cupboard for breakfast without fainting.

    Sure, I could have used that standard line, "Well, I got sick in April and eventually had to completely stop dancing in July; right now we're still trying to find someone who can find a treatment that will get me back to more normal health."  But, somehow that just didn't sit right with me.  Maybe it was an issue of ego, not wanting to admit to this girl, who's been "groomed" from the age of three to be a successful dancer and now performs with NYC Ballet, that she's going to achieve a life of success in a field that I love, while I, at this point, probably never will.  Maybe it was a matter of feeling like we really had very little in common now, beyond a love for dance.  I still don't know. 

    I'm not wanting to ramble and I know that most of you were not dancers, but you've all suffered your own particular losses and still work on adjustments to life that dysautonomia brings.  I'm not even sure what sort of response I'm looking for in posting this, but I felt like I needed to let it out anyway.  Please don't think that I'm in a pit of despair over the turn my life has taken -- I know God's has this all worked out into the most beautiful plan imaginable and I take joy & hope in life.  I think it'll be easier to handle this sort of situation as time goes on, but do you have any words of wisdom on this sort of situation?  Just wondered. 

    Thanks for listening -- sorry it's so long for tired eyes and foggy brains!  :)

    With love,

    Angela

    I can't seem to post without getting the quote passage-sorry.

    I too get tired of people coming up to me and saying, 'You look good" when I actually feel absolutely horrible. That is why it is nice to have posts like this so discussion isn't so difficult. lso, my partner of 9 years is very healthy and it is hard to be around her sometimes. I really hate to say that, but I am jealous that she can get up and go to work every day and live a "normal" healthy life. I have been disabled since 1998, and had to leave a job I enjoyed and worked 12+ hours daily!! My life is changed and somehow I have to learn to live with it. Sometimes I just try to find the smallest glimmer of hope even for just one moment to get me through the day. My symptoms are in full force right now and it is hard. I can't even get out to see a movie. I am grateful to have today and people like you to get me through.

    Keep posting and take care.

    Diane

  4. Difficult situation

    in Dysautonomia Discussion

    Posted

    Dear friends,

    I hate to post this right before the holidays -- I just felt like I needed to talk out a situation that I ran into the day before yesterday.  I guess it's sort of a hybrid of a musing, a venting, and a plea for advice.  :ph34r:  :) 

    I was not feeling very well at all, but wanted to make an effort at some short shopping for Christmas presents.  While I was at one store, I almost bumped into a girl I used to dance with -- she didn't see me, though.  She's very sweet and I wanted so much to go up to her and say hi and catch up on what she's been up to, but, I'm rather ashamed to say, I didn't.  I know it sounds pathetic, but I actually HID behind a column in the store as she walked past and then skulked around behind store displays until she left the store.  :blink:  :(  It was a moment that I had been dreading...the first time I ran into someone from my "former life."

    I'm absolutely mortified by my behaviour, but at the same time, I just didn't know what else to do.  As soon as I saw her standing there looking so very tall and thin and like the very successful dancer she is, everything that I've struggled with these last nine months engulfed me...not getting to laugh through mishaps with friends at rehearsals, no pre-performance excitement while applying make-up and donning exquisitely beautiful tutus and tiaras, the aching muscles from not being able to take class, missing the exhilaration of flying through the air as the music swells and crescendos, having difficulty walking around let alone dreamily walzing and foxtrotting around the floor at midnight, never running to catch the subway to get to my next class, having to pack away the size 4 pants until I can excercise to get myself back into shape (yes, I know it's vanity :)).... I could see it all for a moment, could feel it all again as if it were real. 

    Everything inside me rebelled at the idea of asking Emily what was going on in her life, knowing that the dreaded question would soon arise..."And so what are you doing these days?"  How could I explain to her in the middle of the bustle and shoving of a crowded Barnes & Noble that a great deal of my life has been turned upside down?  One does not simply shout over the surrounding noise that all one's dreams have been shattered...that life these days is regrouping from that sorrow and forging a new path, embracing the simple triumphs of the day such as doing dishes or getting a bowl out of the cupboard for breakfast without fainting.

    Sure, I could have used that standard line, "Well, I got sick in April and eventually had to completely stop dancing in July; right now we're still trying to find someone who can find a treatment that will get me back to more normal health."  But, somehow that just didn't sit right with me.  Maybe it was an issue of ego, not wanting to admit to this girl, who's been "groomed" from the age of three to be a successful dancer and now performs with NYC Ballet, that she's going to achieve a life of success in a field that I love, while I, at this point, probably never will.  Maybe it was a matter of feeling like we really had very little in common now, beyond a love for dance.  I still don't know. 

    I'm not wanting to ramble and I know that most of you were not dancers, but you've all suffered your own particular losses and still work on adjustments to life that dysautonomia brings.  I'm not even sure what sort of response I'm looking for in posting this, but I felt like I needed to let it out anyway.  Please don't think that I'm in a pit of despair over the turn my life has taken -- I know God's has this all worked out into the most beautiful plan imaginable and I take joy & hope in life.  I think it'll be easier to handle this sort of situation as time goes on, but do you have any words of wisdom on this sort of situation?  Just wondered. 

    Thanks for listening -- sorry it's so long for tired eyes and foggy brains!  :)

    With love,

    Angela

    Angela-

    I have been in your situation. Life is turned upside down with illnesses such as ours. To be fair to yourself I would be honest with your situation to your friend. It is nothing to be ashamed about and in the long run you would feel better about yourself.

    Diane

  5. Difficult situation

    in Dysautonomia Discussion

    Posted

    Dear friends,

    I hate to post this right before the holidays -- I just felt like I needed to talk out a situation that I ran into the day before yesterday.  I guess it's sort of a hybrid of a musing, a venting, and a plea for advice.  :ph34r:  :) 

    I was not feeling very well at all, but wanted to make an effort at some short shopping for Christmas presents.  While I was at one store, I almost bumped into a girl I used to dance with -- she didn't see me, though.  She's very sweet and I wanted so much to go up to her and say hi and catch up on what she's been up to, but, I'm rather ashamed to say, I didn't.  I know it sounds pathetic, but I actually HID behind a column in the store as she walked past and then skulked around behind store displays until she left the store.  :blink:  :(  It was a moment that I had been dreading...the first time I ran into someone from my "former life."

    I'm absolutely mortified by my behaviour, but at the same time, I just didn't know what else to do.  As soon as I saw her standing there looking so very tall and thin and like the very successful dancer she is, everything that I've struggled with these last nine months engulfed me...not getting to laugh through mishaps with friends at rehearsals, no pre-performance excitement while applying make-up and donning exquisitely beautiful tutus and tiaras, the aching muscles from not being able to take class, missing the exhilaration of flying through the air as the music swells and crescendos, having difficulty walking around let alone dreamily walzing and foxtrotting around the floor at midnight, never running to catch the subway to get to my next class, having to pack away the size 4 pants until I can excercise to get myself back into shape (yes, I know it's vanity :)).... I could see it all for a moment, could feel it all again as if it were real. 

    Everything inside me rebelled at the idea of asking Emily what was going on in her life, knowing that the dreaded question would soon arise..."And so what are you doing these days?"  How could I explain to her in the middle of the bustle and shoving of a crowded Barnes & Noble that a great deal of my life has been turned upside down?  One does not simply shout over the surrounding noise that all one's dreams have been shattered...that life these days is regrouping from that sorrow and forging a new path, embracing the simple triumphs of the day such as doing dishes or getting a bowl out of the cupboard for breakfast without fainting.

    Sure, I could have used that standard line, "Well, I got sick in April and eventually had to completely stop dancing in July; right now we're still trying to find someone who can find a treatment that will get me back to more normal health."  But, somehow that just didn't sit right with me.  Maybe it was an issue of ego, not wanting to admit to this girl, who's been "groomed" from the age of three to be a successful dancer and now performs with NYC Ballet, that she's going to achieve a life of success in a field that I love, while I, at this point, probably never will.  Maybe it was a matter of feeling like we really had very little in common now, beyond a love for dance.  I still don't know. 

    I'm not wanting to ramble and I know that most of you were not dancers, but you've all suffered your own particular losses and still work on adjustments to life that dysautonomia brings.  I'm not even sure what sort of response I'm looking for in posting this, but I felt like I needed to let it out anyway.  Please don't think that I'm in a pit of despair over the turn my life has taken -- I know God's has this all worked out into the most beautiful plan imaginable and I take joy & hope in life.  I think it'll be easier to handle this sort of situation as time goes on, but do you have any words of wisdom on this sort of situation?  Just wondered. 

    Thanks for listening -- sorry it's so long for tired eyes and foggy brains!  :)

    With love,

    Angela

    Angela-

    I have been in your situation. Life is turned upside down with illnesses such as ours. To be fair to yourself I would be honest with your situation to your friend. It is nothing to be ashamed about and in the long run you would feel better about yourself.

    Diane

  8. Dysautonomia without POTS???

    in Dysautonomia Discussion

    Posted

    I have such an overlap of symptoms, my doctor just tagged me with orthostatic intolerance.  That covers a lot of stuff.  I have never fainted, but lately have episodes of lightheadedness.  I think a lot of symptoms overlap and lots of us don't have just classic sx of one thing or another.  Mayo, and Vanderbilt  rejected me and I've already had ablation (which I highly DO NOT reccommend)  so Cleveland would be silly for me.  So I just deal with my symptoms as they come and go, add on or get a little better.  I am very housebound at this point, but plan on discussing mito at my next appt.  I am determined to get some kind of real dx before I croak.  I haven't seen a neurologist or endocrinologist, but at my last visit we thought, why bother.  But maybe psychologically it would help me to have something to explain this cursed problem.  Morgan

    Morgan-

    Do you have any other problems besides OI? Also, why did the other 2 hospitals/clinics reject you? Are you on any meds? I am sorry you are house bound. I am too and it really is no fun. Email me anytime.

  9. Anyone here on Antipressants?

    in Dysautonomia Discussion

    Posted

    I have been on antidepressants for years to help with my depression related to this illness. Anyone else on antidepressants that seem to help? I have completely lost my appetite which happens from time to time. I am unsure if it is related to my depression, meds, or dysautonomia? I am afraid to stop my antidepressant for fear of worsening depression and bad withdrawal side effects since I already feel horrible.

    I am currently taking Cymbalta 30mg at night. I was switched from Prozac.

    Anyone else???

  11. increasing beta blocker

    in Dysautonomia Discussion

    Posted

    My beta-blocker is the most important tablet I take. I increased my dosage and had wonderful results. I can?t imagine going back to life with out my beta-blocker. I must say I was on Concor first and then changed to Inderal. The Inderal works for me but the Concor puts me in bed and makes me useless. So find the one that works for you. My morning tablet of 160 mg Inderal is fantastic. My attacks have almost disappeared since I increased my beta-blocker. I read an article on MS the other day and they prescribe beta-blocker for the attacks. So it proves my theory that beta-blockers have stopped my attacks for me.

    Good luck and fight your way to a healthier you. Just remember the tablet will help not cure! :ph34r:

    I am on a beta blocker (atenol) and I cannot live without it. If I do not take it my HR is out of control and I end up in the emergency room. Atenolol is relatively safe too!

    Diane

  12. Low body temperature

    in Dysautonomia Discussion

    Posted

    I have had a cold for the past week and have noticed that my temperature is kind of low- around 97.5 degrees.  Has anybody else had a low body temperature?  I feel sick and chilly, but my temp is constantly low the last few days.

    My body temperature is constantly low although I have symptoms of a fever (chills, sweats, etc...) My temp. ranges from 95-97 degrees.

  13. POTS with negative TTT?

    in Dysautonomia Discussion

    Posted · Edited by MightyMouse

    I went through the same treatment from doctors you are receiving. I was treated like my illness was all "in my head" and that the root cause was anxiety. keep the faith and find a good doctor that specializes in thsi condition. Thi site is also nice to speak with other sufferers who can relate great information.

    best of luck-

    Diane

  14. Dysautonomia without POTS???

    in Dysautonomia Discussion

    Posted

    Dysautonomia doesn't have to be POTS related, it can be other things or possibly unidentified.

    Gena

    It's funny that you should mention that your breathing gets strange because I have the same problem somedays.

    Gayle

    One of the criteria of POTS is if your heart rate goes up 30 bpm.  POTS doesn't mean that you have to have any change in blood pressure.  Some POTS patients have hypotension, hypertension or both but you can have POTS without any blood pressure changes.

    NCS is NeuroCardiogenic Syncope

    I personally am very sensitive to medications and yes my symptoms wax and wane.  I have sensitivity to heat and cold.

    Interesting. My heart rate usually towards the evening when my atenolol starts to wear off goes up at least 30bpm or more if I am doing something or upon standing from a crouched position.

  15. Dysautonomia without POTS???

    in Dysautonomia Discussion

    Posted

    Dianna,

    I also have dysautonomia without POTS. I have a lot of the same symtoms as you do.

    I was initially diagnosed with POTS but found out that I most likely have NCS and OI. But I'm definitely in that gray area.

    I just follow the general guidelines that the POTS peope use. Increased fluid, extra salt etc.. I can't tolerate meds very well so I'm not curretly taking any meds.

    I get  tachycardia sometimes from certain foods, alcohol, and medications. And my Hr goes up when I stand but never as high as those with POTS. Mine might go up 30 points sometimes but not all the time.

    Gayle-

    What symptoms do you experience? How were you diagnosed? Do your symptoms come and go???

  16. Dysautonomia without POTS???

    in Dysautonomia Discussion

    Posted

    Dianna,

    I also have dysautonomia without POTS. I have a lot of the same symtoms as you do.

    I was initially diagnosed with POTS but found out that I most likely have NCS and OI. But I'm definitely in that gray area.

    I just follow the general guidelines that the POTS peope use. Increased fluid, extra salt etc.. I can't tolerate meds very well so I'm not curretly taking any meds.

    I get  tachycardia sometimes from certain foods, alcohol, and medications. And my Hr goes up when I stand but never as high as those with POTS. Mine might go up 30 points sometimes but not all the time.

    I am familiar with OI but what is NCS???

    I am thinking that I am not tolerating meds very well either but I am on several. Thanks for posting!!!

    Do your symptoms wax and wane???

    Do you have problems with the summer heat (heat sensitivity???)

  17. Dysautonomia without POTS???

    in Dysautonomia Discussion

    Posted

    Dianna,

    I also have dysautonomia without POTS. I have a lot of the same symtoms as you do.

    I was initially diagnosed with POTS but found out that I most likely have NCS and OI. But I'm definitely in that gray area.

    I just follow the general guidelines that the POTS peope use. Increased fluid, extra salt etc.. I can't tolerate meds very well so I'm not curretly taking any meds.

    I get  tachycardia sometimes from certain foods, alcohol, and medications. And my Hr goes up when I stand but never as high as those with POTS. Mine might go up 30 points sometimes but not all the time.

    I am familiar with OI but what is NCS???

    I am thinking that I am not tolerating meds very well either but I am on several. Thanks for posting!!!

    Do your symptoms wax and wane???

    Do you have problems with the summer heat (heat sensitivity???)

  19. Dysautonomia without POTS???

    in Dysautonomia Discussion

    Posted

    Diane,

    I am glad you posted that question. Who dx'd you and where did you go for testing? I am sorry that you are bedridden, but I'm glad you found this forum, as you'll find everyone here to be so supportive. Also, besides meds, are you using fluids, salts, hose, etc. to help with your symptoms? Or do those things not help you at all?

    I know there are many types/reasons for dysautonomia, and many of us on the forum have POTS, but I, too, was wondering if there are any that fall into a gray area, such as yourself. I might be one of those people as well. I was initially given a dx of dysautonomia and POTS by one doctor, but the neuro at Mayo didn't think I had POTS b/c I passed the TTT. I do have a lot of the classic symptoms of POTS though, but usually only after I've been lying down for several hours or when I get up first thing in the a.m. Some days are better than others.  I get tachycardia often, usually triggered by eating large meals, sugar or alcohol or bad dreams at night. I also get tachy due to surges of adrnealine when startled or stressed or anxious about something. My breathing gets very irregular some days, like my body forgot how to breathe. My body temp and gut motility gets out of whack a lot too.

    Did you pass a TTT? Is that how they ruled out POTS for you?

    I was Diagnosed up at Mayo Clinic. My TTT came back normal so they ruled out POTS. I Initiially went to Mayo because I was having Tachycardia (all the time!!) I was put on atenolol and have to play with the dosage to get it to really help. I am unable to get off of the atenolol because my heart rate races out of control. Sometimes I have tachy with it and have to take an extra dose. They said I have innapropriate sinus tachycardia and dysautonomia because of my above mentioned symptoms in my last post. I rarely have low blood pressure. It ranges from 120/70 to 136/70 (with meds). I also get tachycardia with bad dreams, adrenaline surges, excercise (even walking), low body temp, etc...

    THANKS for your post and please keep in touch. It really helps my morale.

    Diane

  20. Dysautonomia without POTS???

    in Dysautonomia Discussion

    Posted

    I have been diagnosed with dysautonomia but I do not suffer from POTS. Anyone else here have this condition? My symptoms include: chils, hot flushes, reddening of the face, sweats, difficulty sleeping, fatigue, general feeling of ill-health, flu-like symptoms, occasional diarrhea and tachycardia and loss of appetite. I am on Atenolol which helps with the tacycardia. I recently have had a normal panel of blood test including thyroid.

    I also am taking an antidepressant and anti-anxiety med.

    Any help is appreciated. I am so depressed. I am 37 and I am home-bound due to my symptoms. I have been diagnosed in 1996.

    Diane

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