Comments on: Dysautonomia? Part 5 http://chronichealing.com/dysautonomia-part-5/ Helping women with chronic illnesses Tue, 15 May 2012 15:40:26 +0000 hourly 1 http://wordpress.org/?v=3.2.1 By: Jeanne http://chronichealing.com/dysautonomia-part-5/comment-page-1/#comment-6203 Jeanne Mon, 18 Apr 2011 02:35:55 +0000 http://chronichealing.com/?p=2881#comment-6203 Welcome Sissy! I'm sorry she had to go through withdrawing from college and not being able to be left alone. That must have been stressful and frightening for her and the entire family. I am happy to hear that your daughter is feeling so much better. That's wonderful! I hope that she will continue to feel the improvements you mentioned. Thank you for your feedback. Jeanne Welcome Sissy!

I’m sorry she had to go through withdrawing from college and not being able to be left alone. That must have been stressful and frightening for her and the entire family. I am happy to hear that your daughter is feeling so much better. That’s wonderful! I hope that she will continue to feel the improvements you mentioned. Thank you for your feedback.

Jeanne

]]> By: Sissy http://chronichealing.com/dysautonomia-part-5/comment-page-1/#comment-6202 Sissy Sun, 17 Apr 2011 19:18:40 +0000 http://chronichealing.com/?p=2881#comment-6202 My daughter was diagnosed with Dysautonomia over 2 years ago. Last month my dad met an endocrinologist who finished a 5 year study at University of Texas. He had my 19-year-old daughter’s pituitary gland tested with a STIM TEST. The test came back as pituitary damage and so she is HGH deficient. She has been on HGH for one month and the change is huge. The endocrinologist said it takes 3 months to feel the full better but she can feel the difference. My daughter was so bad off, she had to withdraw from college and could not be left alone. She had psuedoseizures, fainting and migraines. I felt like I was watching her deteriorate. I am on a mission to get the word out. It has been life changing! She will have HGH shots the rest of her life but so what !!! IT has given her life back. My daughter was diagnosed with Dysautonomia over 2 years ago.
Last month my dad met an endocrinologist who finished a 5 year study at University of Texas. He had my 19-year-old daughter’s pituitary gland tested with a STIM TEST. The test came back as pituitary damage and so she is HGH deficient. She has been on HGH for one month and the change is huge. The endocrinologist said it takes 3 months to feel the full better but she can feel the difference. My daughter was so bad off, she had to withdraw from college and could not be left alone. She had psuedoseizures, fainting and migraines. I felt like I was watching her deteriorate. I am on a mission to get the word out. It has been life changing! She will have HGH shots the rest of her life but so what !!! IT has given her life back.

]]> By: Dysautonomia Series Re-post — ChronicHealing.com http://chronichealing.com/dysautonomia-part-5/comment-page-1/#comment-3552 Dysautonomia Series Re-post — ChronicHealing.com Thu, 17 Dec 2009 19:19:11 +0000 http://chronichealing.com/?p=2881#comment-3552 [...] The ‘Chronic Healing’ Dysautonomia Series [...] [...] The ‘Chronic Healing’ Dysautonomia Series [...]

]]> By: Jeanne http://chronichealing.com/dysautonomia-part-5/comment-page-1/#comment-2710 Jeanne Fri, 14 Aug 2009 07:17:32 +0000 http://chronichealing.com/?p=2881#comment-2710 Allison, Thank you! :) Jeanne Allison,

Thank you! :)

Jeanne

]]> By: Jeanne http://chronichealing.com/dysautonomia-part-5/comment-page-1/#comment-2709 Jeanne Fri, 14 Aug 2009 07:16:28 +0000 http://chronichealing.com/?p=2881#comment-2709 Elizabeth, I'm so sorry about all of your migraine problems. :( I am also sorry to hear you're not getting restful sleep. Yes, Teresa (Too Many Heartbeats) is very nice. Thank you. I'm glad you like it. It's nice to not feel alone. At the same time, like you said, it's unfortunate that so many people are suffering. Yes, when there are multiple chronic conditions... it's not unusual to "rank" them by their impact on us (what affects us most to what affects us least, for example). Thank you, Elizabeth. Jeanne Elizabeth,

I’m so sorry about all of your migraine problems. :( I am also sorry to hear you’re not getting restful sleep.

Yes, Teresa (Too Many Heartbeats) is very nice.

Thank you. I’m glad you like it. It’s nice to not feel alone. At the same time, like you said, it’s unfortunate that so many people are suffering. Yes, when there are multiple chronic conditions… it’s not unusual to “rank” them by their impact on us (what affects us most to what affects us least, for example).

Thank you, Elizabeth.

Jeanne

]]> By: Allison http://chronichealing.com/dysautonomia-part-5/comment-page-1/#comment-2708 Allison Fri, 14 Aug 2009 01:24:30 +0000 http://chronichealing.com/?p=2881#comment-2708 This has been a truly interesting series! Thanks for blogging about this Jeanne! .-= Allison´s last blog ..<a href="http://i-am-not-endo.blogspot.com/2009/08/thank-you.html" rel="nofollow">Thank you!</a> =-. This has been a truly interesting series! Thanks for blogging about this Jeanne!
.-= Allison´s last blog ..Thank you! =-.

]]> By: Elizabeth http://chronichealing.com/dysautonomia-part-5/comment-page-1/#comment-2707 Elizabeth Thu, 13 Aug 2009 21:18:34 +0000 http://chronichealing.com/?p=2881#comment-2707 I've also had a sleep study that showed that I wasn't hitting the deep restorative sleep which my neuro had suspected for awhile because I wasn't getting anywhere - nor still am - with my chronic daily intractable migraine. Mine I had in June and it didn't show sleep apnea but a form of narcolepsy. I was having "sleep paralysis with hallucinations" which along with the migraines also caused no restful sleep even though I was sleeping a lot. I also found "Too Many Heartbeats" the other day and enjoyed her website/blog. Well, I just wanted to say that this is a great blog - all parts - and thanks for putting it up there. A lot of us (me with #NCS) feel alone and it's good to know we're not - although I hate that so many people suffer through this. I seem to put it as second class or third class behind my migraines and hypothyroidism as a health issue. With others in there as well and at the bottom of the rank - my familial tremor which can actually be quite irritating at times. Thanks, Jeanne Elizabeth .-= Elizabeth´s last blog ..<a href="http://eawake.blogspot.com/2009/08/top-5-most-embarrassing-public-fainting.html" rel="nofollow">Top 5 Most Embarrassing Public Fainting Episodes – Vasovagal Syncope</a> =-. I’ve also had a sleep study that showed that I wasn’t hitting the deep restorative sleep which my neuro had suspected for awhile because I wasn’t getting anywhere – nor still am – with my chronic daily intractable migraine. Mine I had in June and it didn’t show sleep apnea but a form of narcolepsy. I was having “sleep paralysis with hallucinations” which along with the migraines also caused no restful sleep even though I was sleeping a lot.
I also found “Too Many Heartbeats” the other day and enjoyed her website/blog.
Well, I just wanted to say that this is a great blog – all parts – and thanks for putting it up there. A lot of us (me with #NCS) feel alone and it’s good to know we’re not – although I hate that so many people suffer through this. I seem to put it as second class or third class behind my migraines and hypothyroidism as a health issue. With others in there as well and at the bottom of the rank – my familial tremor which can actually be quite irritating at times.

Thanks, Jeanne

Elizabeth
.-= Elizabeth´s last blog ..Top 5 Most Embarrassing Public Fainting Episodes – Vasovagal Syncope =-.

]]> By: Jeanne http://chronichealing.com/dysautonomia-part-5/comment-page-1/#comment-2706 Jeanne Thu, 13 Aug 2009 20:29:12 +0000 http://chronichealing.com/?p=2881#comment-2706 Endochick, With what I have heard about the tilt table test, I am hoping to avoid it too. I definitely feel better than I did a couple of weeks ago. Why that is... I don't know for sure. I had already started feeling better before the dosage change on the beta blocker. So I guess I'll just have to wait and see. I'm sorry you've had to deal with symptoms for so long (!) but I'm glad you know the triggers to be aware of for you. Jeanne Endochick,

With what I have heard about the tilt table test, I am hoping to avoid it too. I definitely feel better than I did a couple of weeks ago. Why that is… I don’t know for sure. I had already started feeling better before the dosage change on the beta blocker. So I guess I’ll just have to wait and see.

I’m sorry you’ve had to deal with symptoms for so long (!) but I’m glad you know the triggers to be aware of for you.

Jeanne

]]> By: Endochick http://chronichealing.com/dysautonomia-part-5/comment-page-1/#comment-2705 Endochick Thu, 13 Aug 2009 18:20:24 +0000 http://chronichealing.com/?p=2881#comment-2705 There are things that aggravate my dysautonomia - stress, exhaustion, too much caffeine, dehydration... the list is pretty long. I've had a long time living with this disease to learn to learn to adjust to it. I call my in between periods the "calm between the storms". I hope you never need the TTT and it was just a medication problem. .-= Endochick´s last blog ..<a href="http://endochick.wordpress.com/2009/08/10/dysautonomia-making-life-crazy-one-day-a-time/" rel="nofollow">Dysautonomia: Making Life Crazy One Day @ A Time</a> =-. There are things that aggravate my dysautonomia – stress, exhaustion, too much caffeine, dehydration… the list is pretty long. I’ve had a long time living with this disease to learn to learn to adjust to it. I call my in between periods the “calm between the storms”.

I hope you never need the TTT and it was just a medication problem.
.-= Endochick´s last blog ..Dysautonomia: Making Life Crazy One Day @ A Time =-.

]]> By: Jeanne http://chronichealing.com/dysautonomia-part-5/comment-page-1/#comment-2704 Jeanne Thu, 13 Aug 2009 04:49:03 +0000 http://chronichealing.com/?p=2881#comment-2704 Teresa, My pleasure. Just posted your long message on Part 2 and my reply to it. Please don't apologize. Anyone who is chronically ill understands time is affected by limitations and such. Sorry you haven't been feeling well. :( I appreciate the time you took to post such detail. I would not think you were ignoring me. I hope so too. Don't worry. I can "aggravate" doctors when needed with the best of them. I want to give them a chance to address it. I have found in 27 years of being chronically ill that doctors <em>really</em> don't like to be told what to do. (I save that for emergencies). :) Sending positive thoughts your way! Jeanne Teresa,

My pleasure. Just posted your long message on Part 2 and my reply to it. Please don’t apologize. Anyone who is chronically ill understands time is affected by limitations and such. Sorry you haven’t been feeling well. :( I appreciate the time you took to post such detail. I would not think you were ignoring me.

I hope so too. Don’t worry. I can “aggravate” doctors when needed with the best of them. I want to give them a chance to address it. I have found in 27 years of being chronically ill that doctors really don’t like to be told what to do. (I save that for emergencies). :)

Sending positive thoughts your way!

Jeanne

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