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functioning?
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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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functioning?

I am so frustrated! It's getting harder and harder to go anywhere. I never know what this bodies going to do so I never go alone anymore. Tonight I went with my husband to have phone checked. I have learned to find a place to sit as I can only stand for about 6 to 7 min b4 I get presyncope or worse. So I was sitting while they worked on phone. My husband decided to go to store next door while I waited. When guy came out with my phone as I looked up I got dizzy, hot, blurry vision etc. So there I am trying to act normal and not faint. I know the man knew something was wrong as he looked at me so odd. Anyway I recovered enough to go get in car and lay back until I felt better. I don't like to tell people I am feeling faint as they over react. I am getting to point I am almost afraid to do anything.
Don't know what I am asking really mostly venting I guess. Anyone else go through these feelings and found how to cope? I don't want to just quit living so to speak but is getting so stressful. This took me off guard as I don't often have this happen when I am sitting.
Oh and b4 I forget hope u all have a good Thanksgiving.:)
Beema
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1323747_tn?1364810482
I am wondering if using a portable wheelchair would be helpful.  When you are in one you don't have to exert as much energy and can do more without worrying if you will pass out or not.  I know it is a big step to get one but a family member who made this decision while young found it liberating.  Much more was possible.  Also there is less explaining to do when things do go wrong.

We are getting our first snow fall of the season here.  All looks suddenly like a white wonderland!  I hope your Thanksgiving is festive too and will wish all a Happy Thanksgiving as well!  Marie
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Marie, I guess I may have to unless I just stay home. I am starting to develop anxiety about going out and dont want to.get caught up in that cycle. Guess I was blindsided when it happened sitting with no warning.
We had a first snow this week but it didn't stick but was beautiful big flakes coming down:) Hope it doesn't snow Thanksgiving as everyone is coming to our house and I want them to be able to get here or we will have all this food to.try to.eat ourselves.:)
Beema
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1438638_tn?1304950057
Hi Beema...and Marie,
I go thru those feelings too Beema :(  It is so hard to accept all these changes and limitations.  It really is a sort of grieving process that we're going thru...realizing that life is not going to be the same anymore.  I am also struggling with the fear of something going wrong while I'm out doing things that need to be done.  I really used to enjoy going out on my own.  My husband and I work together, commute together...4 days a week we are constantly with each other.  On the weekends we would kind of go seperate ways and do our own thing...which I enjoyed, but I am more and more afraid to venture too far out on my own.  I shouldn't have been shopping as much as I was, but I used to LOVE to go to the mall on my own and just browse and shop...I can't do that anymore.

I got back from Disney last Sunday...we look forward to vacation all year and this year was so different.  I had an itinerary as I always do, but we didn't get to do half of what I wanted to do or half of what we used to do.  I almost cried the first day when I was exhausted after taking a shower and getting ready.  I had to use a motorized cart and wheelchair every other day and that was so hard to do.  To just admit I needed it was incredibly hard...and to get over what I thought people were thinking of me was hard at first, but if I didn't use them, I wouldn't have been able to do anything.  It was just a rough adjustment to make...my husband called me the Energizer Bunny one year because I never stopped going...and this year I could hardly do anything.  It's so hard adjusting and I totally understand what you're feeling.  I know this isn't much help, but maybe knowing you are not alone in what you are feeling will bring you some comfort.  I am really glad we're here for each other...even just to vent and work thru all this.

I hope you both have a great Thanksgiving...and everyone else too :)  It's a big job to have it at your house Beema...I admire you for doing it.  Let other's help you and enjoy the day.  I know it will take alot out of you, but I hope you will have the following days to rest afterwards.  Take care :)
Stephanie
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Stephanie, Thanks. It does help to know others know how I feel. It's very hard as I was so active and independent and suddenly not. One problem I have is my husbands having trouble.accepting my limitations. Awhile back in Walmart I mentioned using a scooter they have as I always have to go back to car halfway through our shopping. He looked horrified and said oh don't do that. And said he had no problems with me going to car while he finished:( I don't want to embarrass him and of course as u said I keep worrying what people r thinking. I am concerned as have anxiety attacks which.electrophysilogist.says r caused from body inappropriately dumping adrenaline but notice I.am starting to.feel anxious just thinking about going somewhere and know I must nip it in the bud now.
I am glad u got to go on your vacation. Just the fact u did it.is an accomplishment even if u didn't.get to do all u planned. I admire u for doing it.
U have a good Thanksgiving. My husband is great about helping me do it and we work together well. I am always exhausted at end of that day but feel good I did it. I don't accomplish much anymore so its always a victory for me to have the dinner:)
I guess we never know what life is going to hand us do we? My parents r in their 90s and except for my dad having afib they were still going strong and he was farming full-time til.he was 89. He then had a stroke which slowed him down some. I just assumed I would be that way as I am the one in the family that took care of my health. Exercising, eating well, watching wt etc. So know we never know and have to play the hand we r dealt. Thanks for understanding.
Beema
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1438638_tn?1304950057
Hi Beema,
I'm sorry your husband is having a hard time accepting that you may need to use help to stay mobile in public.  The only way I got over needing to do it myself was because my husband was joking about it with me trying to get me to laugh...he even took a video of me in the scooter when we were passing a band playing and he still laughs his butt off because he says I look like I'm the leader of a parade with that music playing in the background!  I hope he will be able to bend a little on that in the future because I think it might help you a great deal :)  I'm sure he's doing the best he can.  My husband had a day on vacation where he wasn't feeling well and he wasn't patient at all that day and made me feel a little bad about needing to go back to the room for the snack that was getting me thru the day...but I do understand how hard it is on him so I tried to remember it wasn't me.  Maybe that will help.  Your husband seems to do what he can, like help you with Thanksgiving and I'm glad about that.  People just have thier own limitations...  It WILL be a victory to have it at your house and I hope you really enjoy it.  I usually think about all I'm thankful for at Thanksgiving and I'm sure I'll get around to doing that again this year too, but I'm having a hard time with it because of all this.

As for going on vacation...I HAVE accepted that my life is different now but I'm not going to stop going on vacation because of it.  I think that first day I was upset was that vacation-adjustment I had to go thru...and hopefully I won't feel it again next year.

Like you said, you never know what life is going to hand us.  I just saw Cher in an interview talking about her daughter who is now her son and she said "you go thru life and you get what you get...you get what belongs to you."  I loved that :)  Let us know how Thanksgiving went :)
Stephanie
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Stephanie- I have so much to be thankful for! I just let myself get in the way of it.:)
My husband does so much for me. In fact he somedays does everything so I am very blessed. I wonder if his hesitation at me using assistive devices is he is afraid I am.giving up with the AD and ms. Some days I.admit I.want.to.
I am developing so much anxiety regarding the syncope especially in public. I need to make a 6 hr one way trip to.see my elderly parents but am terrified to go as am.so.afraid I will have an episode there or on the road. My mind tells me that's irrational but... I have seen a therapist but y I finally posted this is I see I am on the verge of being this way about even going out in my own city. I don't want that to happen. My electrophysilogist tells me.this anxiety is common with AD but I really never hear anyone on here refer to.this type of.thing. I can't take anxiety meds of any kind so.that's not an option. Really wonder if electrophysilogist is.right and anxiety is normal with this or if its just a flaw in me. You all seem to.handle it so well compared to me. I guess often I 2nd guess my drs and what they say.
You need to post vacation pics. We would love to see them.
Beema
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1323747_tn?1364810482
I have read that adrenalin surges are quite common in AD and they are often "mistaken" for anxiety attacks.  I have also read that dopamine surges are common as well.  I have something that happens that causes my BP to surge but haven't had it tested to know which thing is causing it.

beema36....I wanted to say too that maybe if you talk to your husband away from stores and such about your feelings he may have a change of heart.  I can remember my husband complaining about doing something I could no longer do when I just burst into tears.  He was surprised at how much I felt about loosing the ability to do certain things.  Once he heard how I felt he changed completely in his attitude.  We try to be too strong at times and sharing the feelings is a necessary part of the grieving process.  You have to realize  too that you both are going through this and both being honest with feelings goes a long way to acknowledging the changes.

vbc2000 I am so glad you went to Disney and found ways around some of the logistics.
Every time you do that it makes the next vacation easier to plan.  Maybe on the next vacation there will be a way to have the snacks without going back to the room to save you time and energy.  I so often have to think of ways to do that too as there is just so much energy in a day to use and I try to find ways to conserve.

I want to wish you both a Happy Thanksgiving!  I hope all on the forum have a special day with friends or family.  Marie  
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Marie- That is what the electrophysilogist told me also is.that the anxiety attacks were actually adrenaline surges caused by my confused autonomic system. I had never heard of.the dopamine surges. Do they cause anxiety also? I see ep in a few weeks and will ask him about this. Thank u for.this information. I wonder if there is anything one can do to help it?
Talking to my husband away from the stores is a good idea. It's so.hard when u have been strong and independent to feel so weak and sometimes helpless.
I was learning to find ways to.conserve energy with my ms and was doing pretty good at it but when I started with the AD and adrenaline surges with anxiety I.think I lost my perspective. Thanks again for the advice.
I hope everyone has a wonderful and safe Thanksgiving.
Beema
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1438638_tn?1304950057
Hi Beema,
I'm guessing of course, but I bet it makes your husband a little anxious that you may need help getting around because to him, that might make him fear you're getting worse and he's probably irrationally afraid of losing you.  I think Marie is right...be honest with him and share your feelings...I'm sure some of it will be a surprise to him and will probably help :)  It sounds like from all the help he give you that he's a really good guy.  Maybe all he needed was to just get used to the idea.

I don't deal so well with the anxiety at all...but I've been on long-acting anxiety medication for a long time before all this even happened because I had anxiety issues anyway.  But with all the talk about dysautonomia causing anxiety because of adreneline dumping, I'm wondering if that had anything to do with it?  It's such a complicated puzzle!  All the descriptions I've read about NCS have mentioned anxiety being a symptom so I don't think it's just you.  I can't take any short acting anxiety medication like klonopin because it pretty much puts me to sleep but I take gabapentin (and have also taken gabitril).  Like I said it's a long acting one so maybe that would be a possibility for you?  Something to look into...it helps tremendously with sleep too...I don't really sleep without that and ambien.

I understand about your anxiety about passing out in public, but often our fear is just too big in our minds and doesn't match what would happen in reality.  I would RATHER not pass out in public but if I do I figure what's the worst that could happen?  Someone over-reacts and calls an ambulance?  I would just refuse to go.  The good thing about passing out is...it gets you level and you come to quickly because your BP will regulate itself.  I know it's scary but I hope the fear doesn't stop you from going out and doing things like visiting your family.  I used to waste so much energy and get upset over things that "might" happen...I made myself crazy and the sicker I got, I just didn't have the energy for it...it was wasted angst and I'm glad I'm doing better at that!

I'm hoping to post some vacation pics over the weekend when I have time...it's a 5 day weekend for me...woo hoo!  Take care,
Stephanie
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Hi Marie,
Oh I am the queen of energy conservation these days!  I had just left the snack in the room and we were in the lobby of the hotel...so we had to go back up...which was an energy waster but not so bad.  Too bad with the brain fog I'm no longer the queen of multitasking but I guess being the queen of something is better than being the queen of nothing, lol!
Stephanie
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Stephanie-Thanks. I have an rx for klonopin but have never tried it. Know for sure I can't take things like ssris etc. They r deadly to me. I have not went to see my parents for 2 yrs after I was diagnosed with AD. They r a 6 hr trip one way basically through nothing but open space. Very few towns and have feared I would need medical help and couldnt get it. Then they r in a nursing home and it is kept very hot which is big trigger for me to.faint and there is literally no where to sit while u visit. Last time I was there I.came so close to.a full faint and scared my dad. Nobody could understand I had to sit down and that the heat was too much. My sister was barking orders for me to do things regarding their care as I am an RN and was better able to get that stuff done. That's all fine but it was too much and I ended up so sick. I literally shook the whole 6 hr drive home. Don't know if there's a connection but from that point on I have problems riding in cars as makes me lightheaded. Just the thought of.a trip fills me with horror. I feel like a bad daughter as I need to be there more often for my parents.
The last 6 months I feel I have got so much worse. Have presyncope most of the time it seems. Also neuropathy has got so much worse. Thought that was my ms but am noticing others here have that so seems there's a connection to AD in that too. I am so anxious to see my electrophysilogist in a few weeks and hopefully he can give me some relief.
I wonder if your anxiety was a precursor of your ncs? Did u do any cognitive therapy related to the anxiety?
My husband is a wonderful man! He tries so hard. He also is off for 5 days. I am enjoying having him home. Am.trying to save my energy as tomorrow I need to make 3 pies and do prep for some other stuff. He will help me with that ( mostly get in my way) but he tries.lol  He does the turkey each yr and that really helps.
Will be watching for the pictures.
Beema
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1323747_tn?1364810482
The following article mentions dopamine changes in autonomic failure.

http://www.springerlink.com/content/7m57552781lqk613/

Another article that is rather lengthy but  informative about general changes in the Autonomic Nervous Sytsem is a joint paper by Dr. Blair Grubb and Dr. Barry Kara entitled: Clinical Disorders of the Autonomic Nervous System Associated with Orthostatic Intolerance: An  Overview of Classification, Evaluation and Management.  It is available in several places in PDF form so you can just plug the title into a search engine.

I know I have found other references but will need to search for them.

I think one of the hardest things about our type of syndromes  is that it truly is a hidden disablity.  People can't see a cast and think we look normal so expect us to do this and that.  Especially with aging parents I can see where siblings who do not understand can be too demanding.
I think it helps to educate them one at a time.

Hope you have a wonderful holiday and enjoy the prep time with your hubby!  Marie
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Marie-Thanks for the articles. I am anxious to.read.them.
Yes it is very hard when others can't see definite signs of a disability. I have tried to educate my sister and brother but they both say things like u.can do it if u want or this is your responsibility. They just don't get it at all.
I hope u also have a wonderful Thanksgiving!
Beema
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1323747_tn?1364810482
I do understand.  I have "personalities" in our extended family as well.  I put it that way because their personality, be it hard headedness or whatever, seems to take the place of logic at times.  Sometimes I even think they think they are being helpful or that it is encouraging but it is the opposite.  It makes all harder.  It also makes being around them something I avoid.  I have a small group of relatives who really do get it that I can talk with in a general way and a small group of friends who truly understand what is going on.  Having someone who does is really important for support.  For some in our community I keep it pretty general.  I have dropped out of certain functions as things have become more difficult and just explain in a very general way that I need to rest more in the afternoons and evenings and going out is harder then. They seem to accept that.  

I am now having more fatigue and have had to make trips to the doctor and shopping shorter.  A few times it has been hard to drive home.  I have had a few times too when I couldn't push my grocery cart.  I know a lot of people have gone beyond this, some are often confined to bed, but we all go through stages and it is always an adjustment to realize things are again changing.  

I am going to work on Thanksgiving in stages.  Today I will create the stuffing.  Tomorrow will be the turkey and veggies.  We actually decided to leave the desert until a few days later.  It works for us!  I think along with the change adaptability is our biggest Allie.

Have a wonderful holiday!  Marie
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Marie-I like that term personalities. It fits.:) I have given up on trying to make them understand. It's just not going to.happen so I avoid them as much as possible.
I have downloaded and skimmed through articles u cited while my first pie was baking. They r very interesting. Thank u.
I.also am doing things in stages. Waiting a few days for dessert is a great idea. It would eliminate the overstuffed feeling. I may suggest it but imagine my grandkids will protest.
I am sorry u have so much fatigue. I definitely understand that. Have u gotten an appt for Mayo or one of the autonomic testing centers yet? Hopefully they can provide u answers.
Must get back to my pies. Have a great day!
Beema

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1438638_tn?1304950057
Hi again Beema,
I'm sorry the nursing home isn't a more hospitable environment for you and I'm sorry your family, specifically your sister isn't very understanding or supportive.  My sisters were the same way before they really understood.  The only way the came to understand is from all the articles I sent them...especially the "spoons story" Heiferly suggested.  I know it's probably near impossible, but thry not to take on guilt on top of everythng else about not visiting more often.

I don't know if my anxiety was a I especially doubt it because there's such a hereditary link to my depression and anxiety problem.  My grandmother, mother, sister and now sadly, my niece all have the same issues.  I have done cognitive therapy and dialectical behavior therapy for the anxiety and it is definitely work.  I really need to refresh myself but I can tell you, it doesn't work if I'm really in a tailspin.  Luckily that doesn't happen alot anymore but if and when it does...I do have to resort to short acting anxiety meds.  I don't even know if I have any laying around anymore!  I am my own worst enemy with anxiety for sure...and I'm sure all the extra adrenalin firing around doesn't help!

I hope you got a jump on things with the help of your husband.  Just took my pies out of the oven and my whole house smells incredible!  Enjoy the day Beema and make sure to schedule some rest time for the next few days too!
Stephanie
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Stephanie- I have never heard of dialectical behavior therapy. I tried providing educational material to my sis and brother but they weren't interested. They were same way with my oldest brother who died of lung cancer several yrs ago. To this day they think if he had just been more positive he would have lived. He was very positive and so courageous. They have their heads in the sand.
Wow, ur baking and drove yourself to work all in one day. I am impressed. My pies r ready and like u I am enjoying the good smells in the house. It smells like Thanksgiving:) Have a good holiday week.
Beema
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