So, Where's The Safety Line?

[MightyMouse]

Boo hiss for the receiver... there was so much data dropout to the receiver that the test was essentially inconclusive. Of the 48 hour test, we got a broken set of 24 or less hours.

On a good note, what it did collect wasn't horrible. Oh, and if I have to hear again from a doctor "this has never happened to one of my patients before" I think I'll scream. Seems to be a common phrase for me to hear.

Nina

[tinkerbella]

nina,

maybe we could all pick a time and have a good old scream together. i know i sure could use one. we could have a world wide shout out for dysautonomia!

feel better soon... i just had a nice long cry reading old letters from mom mixed in with pics of my ex all in the same box.

xxx's

bellamia~*

[iheartcats]

Nina -

Just wanted to say you are in my thoughts and I do hope things improve (they have to is what I always tell myself!). I know how difficult it is to have bad sleep - you really do notice how much better you feel WITH quality sleep so good luck with the RX.

[comfortzone]

---double post---

To Nina ~~

Just posting my first note on the forums to you Nina ~ Better days - hours - and minutes are most assuredly ahead ~ Nothing stays the same ....... Problems find solutions ~ pain gives way to less pain ~ hearts mend --- Staying connected as you are the best you can in your own way shows your strength ~~~ It's sometimes when we are in our utter weakest end of rope kind of experience where we understand how blessedly strong we truly are & we go forward one step at a time ~ Blessing others even while feeling so bad ~ & truly your response to those here shows that love --- it's in you and it can and will heal........

take care

I may have posted to the wrong person ~ but anyway healing to you Nina ;-)

[Guest humanb4monitor]

NINA I am sorry and hugging and know exactly how you feel. I do not say that w/o knowing. I never say "this is what I would do if I were you" unless I am/was. I will post detail tomorrow BUT know that yes--the exasterbation of symptoms based on what you have posted is real in H*** and here in us. And they can spiral now still. The emotional part is as valid, and that data has been in POTS info forever. Body trauma makes for the worst party ever. I hope I am not making it wose by validation. Because if iIcould run and help you I would, but sounds like you have love around you. I do not.

(((Nina-Wellness-Balance)))

[janiedelite]

Nina,

I'm sorry that somehow I missed your initial post! Please know that I'm sending healing prayers and thoughts that you could get out of this slump. The pain you've been experiencing would wear anyone down. You always try to put the best face on things, even when you've been going through so much. And my heart aches for you that you have had to deal with the loss of your relationship with Teri at this time as well.

Please keep us posted. I hope you can get some more rest. And I agree with the frustration at seeing my doctors scratch their heads ... but at least they're trying! Prayers that they get to the bottom of things soon and find an appropriate treatment.

Hugs,

Janie

[blueskies]

Hi Nina,

I usually post over on another forum but I came here to ask a question and read your post. I'm so sorry to hear that your relationship has broken up. My heart goes out to you. And yes, emotional issues are hard on this dys stuff. Though I never could work out how anyone could not be emotional having to deal with this stuff. But a relationship breakup is a 'biggy' and I'm just sad for you. Your post touched my heart.

many, many hugs,

blue

[MightyMouse]

Hello again friends, I'm doing my best to hang in there. I know I'll get through this--sadly, I've been through far worse in my life, and I lived through those events, so I know with time, I'll at least be emotionally better. Physically, it's still pretty hard. I was really bummed out that my whole BRAVO test was such a bust. There was just so much data dropout it was hard to draw any conclusions. Now my GP wants me to get a head MRI b/c the headaches have been relentless--but she forgot I can't have an MRI for 30 days from the BRAVO implant date, so I still have about 20 days before I can get it done.

I also need to find a decent neurologist--I haven't had one for about 2 years now. I tried a new guy last Summer, but he was HORRIBLE. I will NOT go back there--although I wll get my paperwork on the EMG's his coworker did (who I liked, but the guy only does EMG's). I have a fall back choice (my former neuro), but he's really not that on top of things and I don't trust his judgement--but I'll use him for refills on my maintenance meds like Neurontin (Gabapentin), and if I know what tests need to be done.

On the home front, it's stressful. I used to look forward to coming home from work, but it's not a place of rest or peace for me right now. I only look forward to my time with the cats... and at least I can lock us all in the bedroom together and pretend I'm home alone with them.

Nina

[Noreen]

{{Nina}}

you're showing your true mettle girl - you are remaining strong and true to yourself as shown by keeping your medical priorities straight (and, of course, thinking about your kitties). I think your moniker should be the Amazing Mighty Mouse. So many would fall apart and if they had a chronic illness complicated by dysautonomia would fall further downhill if situations were reversed.

I hope knowing that positive thoughts and loving energy is flowing toward you from this forum is a help. Remember to breathe, when in doubt, listen and -

On another note - I understand how hard it can be to find a neuro you can work with - I've got way too stories on that specialty. It is wonderful that you know exactly what you need from them and refuse to take less than you deserve.

Hope the headaches relent and the cats get all the petting they deserve (in their minds, of course)

{hugs}

noreen