Dysautonomia (Autonomic Dysfunction) Community
Well, Lets see how the week is looking for all of us....
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This patient support community is for discussions relating to Dysautonomia (Autonomic Dysfunction) including: Postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and others.

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Well, Lets see how the week is looking for all of us....


   Well, Well, Another Week has arrived.

     For me, I hope that my week is looking to be better than it has the last week...Lol
I have to revisit the  EP,, PCP, and the Neuro this week to check on a Game Plan for some kind of relief.

   Other than that I am trying to regain some strenghth back from being so bed ridden the last week.  
Any Ideas??????

     Gee wiz......I sound Like a Debby Downer!  Sorry......  :)  
Guess I get down sometimes when the AD and MS run my life.......BUT!!!!  This too shall pass!!!!  
Thank God for that :)

     So lets hear about everyone elses "Good Week"  to come!

Hugs to you all,
~Tonya
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26 Comments Post a Comment
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Hello Tonya,

    Glad that you are feeling better! I don't think I have gotten the chance to talk with you since I'm new to this forum. So hi. I think we all have our down days no matter how hard we try not to. I always try to keep a positive outlook but sometimes being positive just takes more energy than I have. On those days I always tell myself a scripture that my grandma used as her motivation: I can do all things through Christ who strengthens me!!!

    I also am going to see my EP this week, however I am excited to go! I just had my tilt test a couple of weeks ago and I'm ready to start treatment. I know it probably will be a long road to get the medicine and diet and exercise regimine right but I'm still anxious to get started. I have a stress test on Wed morning and see the doc right after. I will report my new treatment plan after I return.  

   Glad to meet you and look forward to talking with you in the future!!
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Nothing on the schedule all week.  Cody did miss school 2 days last week, so hopefully he has a better week.

Going to see "Shrek the Musical" on Wednesday night.  My daughter is taking a theatre class in college and is required to to see two productions.  I think it should be fun to see.

Easy week for me,
Christy
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Tonya- I hope your Drs can come up with something to help u. As far as regaining strength give your body plenty of TLC.:)  
Ok I.will be Debbie Downer:( I am about to give up on finding anything that helps my ms or ad. Whereas I.used to.have a good day or.even a few good hrs its just not happening anymore:( Getting so hard to do anything and.I know my families getting tired of.picking up the slack. Ok enough of my.pity party.
Mon.-going to.try again to.get contractors out here to give us bids on fixing the brick and cement on front porch which suddenly starting crumbling and bulging. Is just plain weird. Had this house built 14 yrs ago and suddenly its falling apart:(
Tues.- see about setting up apps for my and dh flu shots.
Wed.-rest I hope.
Hope u all have a good week and that u feel.better Tonya.
lilmissposey-hope ep.comes up.with good.treatment plan for u.
Christy- lucky u I Love Shrek:) Have fun and enjoy.
Beema

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I've been reading this weekly thing for a while but I will finally post (just because you guys seem so cool)!!!

I'm hoping to hear back from DYNA kids this week as I finally decided to join.

Last week I turned 18 and I was hoping that would qualify me as an adult, but then when I went to get an ekg (because I am about to start domperidone which can cause heart problems) and they said I still needed a pediatric one...shoot!!

I'm going to be working hard on my online college classes this week, psychology and statistics.  Statistics is really fun, psychology is getting a little boring.

tonyad: Have you tried a recumbant bike?  I've found that for me it is really helpful in regaining strength, but I don't know what can be done with MS.
lilmissposey: I'm on the same road as you, just trying to find the right treatment.
christydrake: I love Shrek too!!!
Beema: I've been thinking about getting a flu shot too soon, because for me (and other dysautonomia suffers too I bet) even a cold is horrible.
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Well first of all, I want to wish everyone a good week :)  I hope you make it thru everything you have to do, and I hope you can find some joy in every day...I will be trying to do that myself.

I am going to be having a full week at work after being off for my husband's step-father's death two days last week.  We get a few days bereavment leave when a family member dies and we took Thurs and Friday.  I was very thankful for the time off even though it was kinda filled with sad stuff.  Any time I get off from work is a gift...it's really tough for me to make it thru the work-week lately.

It will be my first week working on Midodrine so I'm going to be keeping good records about how I do on it.  Seeing the Cardiologist next Monday so I need to tell him how it's going.  So I'm actually just going to be plugging along at work...which is more than enough of a challenge.

I really enjoy good TV and a few new shows are starting this week, so I'm looking forward to some good fiction and some good escapism :)  I'll be burning my Yankee candles, wearing purfume, and trying to inject beauty in my day whenever I can...just little things to feed my soul :)  They really help.
Stephanie
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  Well, I have been having at least one appointment a week lately with one doctor's office or another/radiology department.  Had a pituitary MRI on Friday about my tumor (it had been about 13 1/2 months since the last MRI for this).  I need to trust God about the tumor situation.  It is difficult waiting for the results.  Took a pill last night that made my tachy worse this morning I think.  Recently added cytotec due to very frequent heartburn, even w/maximum dose of ranitidine.  Also, the GI office has scheduled another colonoscopy due to GI bleeding and ferritin dropping.
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Patient915
Happy late 18th birthday! Hope it was a good one. Also good luck with the online classes.

I am thinking of getting a recumbant bike as I know we need to keep moving in order to stay strong but is hard when standing long is an issue. That is a great idea. Thanks for bringing it up.
Beema
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Hope this week is better for you.  It is easy to get down when you are feeling worse than usual.  I am coming out of a bad flare of pain & migraines and it definitely affected my mood.  Am feeling grateful to be back to my regular lousy self.  LOL  

Hang in there!

Laura
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Cheers to good escapism.  I relaxed last night watching a movie and it was so helpful to get my mind off how I'm feeling and all my responsibilities.  I am not always good at giving myself a break when I need it.  I too am looking forward to some new shows this week. Am hooked on Gray's Anatomy, though sometimes I am so tired I forget to turn it on after putting my girls to bed!  

Hope the Midodrine is helpful.  :)

Laura
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wow--you all have a lot going on! I am so impressed by those of you who live with this on a daily basis and manage to carry on as normal a life as possible. You are all truly amazing.

We have a quiet week around here. I am hoping that Nick will have at least a few days he can concentrate well enough to work on some school work. Our big problem is that he got really sick towards the end of the school year last year and ended up having to take off the entire summer as well. Trying to start back where he was is nearly impossible (he's homeschooled and always has been). He has only 10 or 15 lessons left in Algebra II and a few modules in chemistry. His poor brain just can't wrap itself back around logarithms and stoichiometry at this point.

We don't have any appointments scheduled until November but I am hoping to get a couple blood tests done in the meantime. Nick's had a rough couple of weeks (lots of neurological issues: pain, dizziness, pressure, "mixed-up" feeling) so we'll try to let him lay low as much as we can.

Hope you all have a nice, cool, restful week!
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Hi Everyone :-)

I really like those weekly updates on our whereabouts!

Today I had an appointment with the phlebotomist for a sodium and thyroid check.
Also our dog groomer came today for our little Winslow (she does home visits), although my husband would have needed some grooming too since he hasn't shaved since the start of his holiday, but she said she doesn't do husbands - What a shame! ;-)

I'm seeing my GP tomorrow morning - I need to ask for custom made stocking, and see if he is up to coordinate my care between different specialists.

Last week has really knocked me of my perch, and I don't seem to be able to recover - I am so exhausted!

I see that everyone will be busy this week -

Tonya and Beema - you are not a little Debbie Downer, you are just going through rough patches, and I really sympathise with you.
Maybe it is the change of season aggravating things ...
Hopefully things will improve soon :-)
Beema - I am sorry to hear about your family.
Have they really told you that they are "getting tired of.picking up the slack", or is it more your impression?

Happy belated 18th Bday Patient915 - Real drag Hey, to be still considered a pediatric
patient! ;-)
I, myself, like to do indoor rowing because I am seated down, and also it works my upper body.
I wish you success with your online classes!

vbc2000 - Hopefully you will do well on the Midodrine, and will have good news to report to your cardiologist :-)
Working when you are not feeling your best is indeed very hard - I wish we could buy energy by the pound!!
Smells also make me feel better - Vanilla and Coconut in particular.

SurgiMenaupose -  Sorry to hear about the hard time you are having with your pituitary and low ferritin.
Uncertainty is always a difficult place to be - When will your result be available?
You will be in my thoughts :-)

LA1989 - I hope your son will have a better week.
My heart goes out to him - At the best of times, with a nice fresh brain, logarithms and stoichiometry are not easy to grasp, so I can imagine how difficult it might be for him to wrap his brain around those concepts. When you are in pain, tired, and your brain feels already heavy you certainly don't need the added weight of new knowledge.

Laurab2818 - I love Gray's Anatomy too, but here in the UK we don't get it until much later in the year.
But, with the breaks in the USA that some shows have, we almost catch up.
I'm looking forward to Glee - If I could only watch one show that would be it

Well, I'm wishing everyone the best week that can possibly be had.

Globalhiking
:-)
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Thanks for your comments.  Well, they handed out a paper Friday after the MRI saying the dr. would have results in three business days (or sooner if they felt it urgent).  But then, the endocrinologist mails a report and I don't know how long that turn around time is.
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Globalhiking- actually my grown daughter told me she feels I am giving up and could do more and doesn't understand. My dh hasn't.said it to my face but its in his body.language plus i overheard a remark he made to a friend about his frustration. I can't blame them as I was there and now most of.time I am just not.:(
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I have a new event to attend this week and thought I'd share. On Saturday me, my 11yr old daughter and my 9 yr old son are going to be part of a Guiness world record. A little town here in Oklahoma is hosting an event called Kites Over Enid. 10,500 kids (all ages, even adults) and 10,500 kites. trying to set the record for the most kites in the air at one time. I always wanted to be a part of a world record! :) The kids are pretty excited about it, they are going to have kite tricks and prizes falling from the sky for the kids. I do believe I will bring a lawn chair with me so I don't have to ruin the kids fun.
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Sounds like it should be quite a sight!  Gonna bring a camera?
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I love kites! That sounds fun. Enjoy!
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Yes I will bring my camera. I will uploads the photos here if anyone wants to see. I think it will be a great memory for the kids!! I can't wait.
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I'd be interested in pics!
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Sorry you are feeling so unsupported by your family :(  I know how disheartening it is.  I hope they come around soon.  Maybe your husband is just "having a moment".  I know it can't be easy for our dh's.
Stephanie
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Stephanie,
It's very hard on him and he's wonderful. Also he's having stress of possible layoffs at his job and I know that's weighing on him.
I just have got.to.figure ways I can be more help around home. I am hearing some.very innovative ideas on this forum of how others deal with this nightmare. That's helpful.:)
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Odd week for me.  I'm on crutches after a fall.  Had a contracture of one toe in the bruised foot last evening that lasted for hours.  Hope next month when I go to the podiatrist to find out more about such.  Was told I have tarsal tunnel some time back.  Have been also dealing from long distance with some aging issuses with my mother.  Am finding the emotional toll much more wearing then the physical.

Dog groomers that make house calls..Wow!  If anyone does hear of one of those elusive husband groomers let me know...;)  I am kidding really.  I couldn't function here especially being grounded now without my better half. He is my rock. He is overworked of late for sure.

beema36...I have been feeling odd too watching my husband take care of eveything this week and feeling likewise not that helpful.  Sometimes it can be little things they appreciate when they are taking more of the load.  The other night I had an idea about dinner for which he was grateful and suggested he bring me a cutting board and potatoes so I could peel them.Seemed like a small thing but it really seemed to free him up a bit not to have that task.

Several of us are going through difficult times right now. I have found in the past when I get into a funk that it helps to indulge myself for a while.  Time alone is often what we need to process and sort through things.  Too often we are urged to bite the bullet, pull ourselves up by the bootstraps, etc etc. and we need time to grieve our losses...gain our strength, and sort through our dilemmas.  Sometimes just talking to someone who understands like on this forum helps.  Keeping stress down to a minimum is good but as we know not always what happens.  We can strive for that one tho.  

patient915..Hello!  Great on joining DYNAkids (teens?) and taking the on line classes.
Hope the psych class picks up a bit.  I have never had one of those I didn't like but so much depends on how it is presented.  Nice to see you here.

By the way, this is one forum where you can explain your myriad of appts./tests and no one  even blinks.  Everyone gets it.  Awesome.  Marie

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   Boy, Have I ever missed the Boat on this wonderful thread...Sorry Friends :(

   There is soooo much to comment on!  Please forgive me (only for this week..Lol) that I do not touch on each and everyone of you. BUT...Please knoe that I love you all and think of each of you every day!  This forum is without a doubt..Hands Down...The BEST Forum on MedHelp.

    Beema, Becasue you too have MS as I do along w/ the AD Issues.....I want to say to you......."I Feel Your pain and unsure-ness (another invinted word by..Truly yours..lol).
While there is no excuse for your family to carry on in this manner, They just 'Do"!   Not sure if it is their way od dealing with it and Non- Acceptance intheir mind.

   Just know though that You are doing the Best that YOU can do.....and that's all You can do!  It does hurt though!  They just want us to be "Healthy"  and live as we used to :)

    Heck..I STILL have a Terrible time sometimes trying to wrap my brain around what is going on in my body.  PLease know that you are thought of and Loved much and always able to come to this Forum to Rant, chat, advise, and support others.

    We are such a Truly tight Group here on this Forum and "No Drama Here"..You know what I mean!

lilmissposey:  I too Love kites and am Very excited that your children will get to experience (sp) this. What a cool thing to do. I too Love Kites and how they soar through the air so effortlessly, w/ such grace......

LA: My thoughts and Prayers go out to nick and you also. Big Hugs :)

Laura: Thanks for the kind words :)  New season shows.....Horray!   I love Criminal Minds, House, Dr.G, and...sorry I cannot think of the other two...Duh!

Surgimeno-P:  I know the waiting is the hardest part for the results. I have you in thought in prayer.....Please keep us updated.

Stephanie: I too am sorry for the loss in your Family. How is the Midodrone working for you? Good I hope :)

Christy:  Hope cody is feeling better. I Love Plays. Have fun with that :)

Global: I hope that you are feeling a bit better. How did your blood test come out?

   If I misseed anyone..I am soooo Sorry....I love you anyhow ;)

  AND, I have decided that we are "ALL" aloud to be Debbie Downers sometimes.....BUT......I think a better name for it shoulkd be a...?????  Let's think of a good name for it   AD-Mania??  DysAuto-Downer?  Any thought??
Just being silly I am.......Lol   Gotta laugh sometimes at ourselves right??

Big Hugs,
~Tonya

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Tonya- I am.definitely full of.unsure-ness. After having a definite diagnosis.of ms for 10 yrs.one.would.think I would have figured that out by now. I am finding I keep trying to.figure out.what's caused by ms and what's ad. Have decided it really doesn't matter because I am not sure even the Drs know. I just hate not being in control of my body anymore:)
Last night.in shower I.did.my.Tarzan rendition and.suddenly without warning tipped backward thru shower curtain. I grabbed curtain and was swinging by it. Luckily I am small as curtain held me and kept me.from bad fall. My husband came rushing in and asked.the dumb question "what Ru doing?" I.told him practicing for.next Tarzan movie and he wasn't amused.lol His question was is this caused from ms or ad as this is 2nd time Italy happened. I don't have a clue and it frustrates me as I want to know all the answers.:)
I think mostly my family is scared. That's y I am so glad for u all as I can speak openly to u guys. I hope.ur doing better.
Marie- I.hadn't thought of.helping with cooking that way. It would also make me.feel useful. Thanks for the.idea. I hope.your footsteps better. That sounds painful.
Beema
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   I am rolling as I am reading your Tarzan story.......
I hope we get voting privelages (sp) because if so..I vote for you the Lead Role!  Your Hubby's response also made me laugh so hard.........Like, what the He** do you think im doing?   You could also have told him that you were being sexy for him and are a bit upset that it was not a Turn on...and that you had been practing this for the last few days!...Rofl.......

    Once again, I too know what you mean about the AD and MS!  Not sure if I posted it on here or not but last month I went to a Seminar and the MS Doc explained to me that the AD was an extension of the MS...kinda like fatigue and vertigo or Neuropathy. When he explained it like that....and from what I have researched, it made a bit more sense.  But it still ticks me off!  The AD is Terrible!!!!!! I HATE IT!!!!!!

    And me being a Total control Freak.....I too have a Very hard time w/ the AD and MS making my Life Decisions for me!  After all this is the time in our lives where we should be 'Foot Loose and Fancy Free" Right??

   Ya, I too have had the shower episodes...of course not nearly as GLAMOROUS as your..But I will try harder next time to either top yours or at least come close...Lol
I am usually either hanging half in half out shower or get out in just enough time to pass out on floor. So there I am laying there in all my glory sprawled out for my hubby to check out......Hmmmm, womder what he thinks...hahahahaha!    Then I come to and he helps me to the bed.   Again, No Academy Award Nominee here.

   Anyhow, Gotta love it right? We are all good for some crazy stories!  Thanks again for the smile....I needed it ;)

~Tonya
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Tonya- u made me.laugh so hard I.cried. Maybe we can have dual roles in a movie.:) our husbands do.go.thru.a lot.
I knew u went to that seminar but somehow missed that ad is extension of ms. That explains a lot. I know my neuro.is.convinced the ad is caused by ms but my ep isn't sure. All I really know is I hate it! But a positive of it is I have met all u nice people on here.:)
Thanks for.the.laugh haven't done that in ages.
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Thanks for the condolences on my family's loss everyone :)

Beema - I too was rolling on the floor reading about your Tarzan impression!

Tonya - thanks for asking about the Midodrine.  I had the best test of it last Thurs. when shopping...which is when pre-syncope symptoms always happen if I'm at it long enough...which I try not to do anymore.  I seemed to last a little longer but I did still have the same pre-syncope I always have.  I haven't been dizzy again like the first time I took it during the sinus infection luckily and have been working on it for 2 days.  I haven't noticed much of a difference to tell you the truth.  Maybe I just haven't been in a pre-syncope inducing situation yet?  The only two side effects I've noticed are a kind of numbness in my scalp, a bit of a pressure in my head and itchiness of my skin.  All kind of weird, but tolerable so far.  My BP is up from 100/70 to around 114/72 about 2 hours after taking it.  Truthfully I expected it to go up more.  Haven't taken my heartrate which I should I guess.  

There's always a chance that I'm not absorbing all of the medication I'm taking because of my gastric bypass.  I generally have to take twice the normal dose or a pretty high dose to get the same effect, so I'm thinking that may be going on here.  My doc knows this, so I'm going to have to stress it again.
Stephanie
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