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Delta

Home Alone?

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Hello, all!

I am new here, although I have been lurking for a few weeks now.  I wanted to start with a longer post by way of introduction but, honestly, just now I don't know where to begin - this dysautonomia stuff is all over the board.  I'm three months in and still trying to figure things out; many dr. visits and tests.  So I will start with a question . . . is there anyone here who is home alone for hours, and how do you deal?  I am retired; my husband has a couple more years to go.  He has a 12-hour day if you count the commute (same thing I had when I was working).  We're kind of "removed" where we live - more rural - we have neighbors, but they're not that close by and they all work.  Some days I don't feel OK to drive and if I do it will mostly be for short errands because I will get wiped out doing the things/places I used to do that involved more standing and walking (from what my Rite Aid cuff and pulse ox tell me, my BP and HR often go up higher than normal when I stand, walk or generally exert myself; then I just feel really fuzzy-headed until I sit down for a while and it eventually comes back down.  I never know how "bad" it's going to be . . . a few weeks ago I went shopping with my Mom and I started to feel weird so checked my BP and it was high (not super) and after a while it came down on its own).  It's kind of scary being alone (OK; not totally alone; we have dogs) for so many hours with all these weird things going on - I try not to, but I get anxious about it sometimes and it seems that there's often a "baseline anxiety" that comes with this so I'm only making it worse.  Our families live in other states . . . my Mom has come down a few times for a week at a time and my husband has taken time off from work to stay home with me or drive me to appts. but I can't keep asking them to do this.  I would be grateful for any advice/thoughts/ideas and feel free to ask me any questions as well!

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Hi Delta

Do you have a diagnosis and treatment plan with a specialist?

Are you familiar with the interventions you can try such as compression hose to reduce symptoms?

I have the same issue with bp tending to go up when I am standing and eventually dizziness.  I have low blood volume and do best if I can drink a lot of fluids and some extra salt throughout the day.  I take a beta blocker which helps.  In the pas a low dose SSRI helped me as well.

It is really hard to be alone at home depending on how disabled you are.  I am going through a relapse right now and have had some days that getting out of bed or moving around much was very difficult.  Fortunately my husband has been able to be home on those days.

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Hi, and thank you for responding!  No official dx yet other than it looks as if ANS is messed up.  Endo & other docs ruled out pheo, thyroid, adrenal stuff, potassium deficiency.  Had neuro tests where they hooked me up to a BP cuff and had me do all this breathing stuff and stand up for five minutes, but they didn't tell me anything (yet).  They wanted me to do an EEG with lights but I am not comfortable with that because I looked up this test and apparently some people get really traumatized by the strobe lights; have you heard of this?  I don't want my ANS to get any more stimulated than it already is!  Cardio gave me Metoprolol a few days ago because I was concerned about the heart rate (he isn't) - I finally took literally a crumb of it yesterday when HR went over 100 and was taking a while to come down (after shopping and putting away groceries - everyday stuff, right?) and it knocked me out.  It's tricky about how to take it because some days HR is just fine.  Also, I researched the Met. and discovered it's "selective", meaning it's designed to affect that heart more than other parts of the ANS . . . I'm thinking maybe I need a "non-selective" type since my sx are not just cardiac.  I've read a lot on here about low blood volume and compression hose - how did the docs dx that?  I have no idea if I have it.  I have definitely upped my fluids, though, and I have never been much of a water drinker.  When you say it's hard to get out of bed - is that because of fatigue, pain, or what?  Apologies for all of the questions; I am trying to figure out what goes on with this type of stuff.  Like, what exactly happens in a relapse?  Feel free to PM!

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7 hours ago, Delta said:

Hi, and thank you for responding!  No official dx yet other than it looks as if ANS is messed up.  Endo & other docs ruled out pheo, thyroid, adrenal stuff, potassium deficiency.  Had neuro tests where they hooked me up to a BP cuff and had me do all this breathing stuff and stand up for five minutes, but they didn't tell me anything (yet).  They wanted me to do an EEG with lights but I am not comfortable with that because I looked up this test and apparently some people get really traumatized by the strobe lights; have you heard of this?  I don't want my ANS to get any more stimulated than it already is!  Cardio gave me Metoprolol a few days ago because I was concerned about the heart rate (he isn't) - I finally took literally a crumb of it yesterday when HR went over 100 and was taking a while to come down (after shopping and putting away groceries - everyday stuff, right?) and it knocked me out.  It's tricky about how to take it because some days HR is just fine.  Also, I researched the Met. and discovered it's "selective", meaning it's designed to affect that heart more than other parts of the ANS . . . I'm thinking maybe I need a "non-selective" type since my sx are not just cardiac.  I've read a lot on here about low blood volume and compression hose - how did the docs dx that?  I have no idea if I have it.  I have definitely upped my fluids, though, and I have never been much of a water drinker.  When you say it's hard to get out of bed - is that because of fatigue, pain, or what?  Apologies for all of the questions; I am trying to figure out what goes on with this type of stuff.  Like, what exactly happens in a relapse?  Feel free to PM!

Hey. You will get better with the right meds. I used to go from 117/76 BP when sitting, all the way to 170/120 within 1 minute of standing, and it would stay that way until I sat back down. My heart rate would also go up 30-40 points. Sometimes as high as 150 BPM. You can see my other post "pictures of my blood pressure!" These are the numbers I have when I first wake up, or 8 hours after I have taken my BP meds. 115/70 sitting, then 133/100 when standing. When you have to worry is when the big BP number goes above 170 and the little one goes above 110. That is when you need to go to the ER, or sit back down if that alleviates your BP. There are other meds besides Clonidine that will help you lower standing BP. I usually do not feel any symptoms when standing until my BP reaches 140/110, but I think I'm like a frog in boiling water. I have been dealing with this for so long, I am just numb/immune to some of the dizziness and passing out, as even going from normal BP to 170/120 did not make me pass out, but it made me feel like I was having shortness of breath, heart attack, and I felt like death. Maybe some other members will chime in on what BP meds help them lower their standing pressure. I can maintain normal standing BP also, if I take .2 mgs of Clonidine every 8 hours. I just don't really want to take more than .2 mgs a day as this drug can have issues when withdrawing. 

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Regarding the beta blocker my specialist has said pindolol is best for POTS.  Perhaps your doctor could look into this.

Yes the reason for being unable to get out of bed is severe fatigue and also dizziness and weakness.

Severity of symptoms varies a lot from person to person and also for a patient symptoms can change over time.  Most people do improve over time.

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4 minutes ago, MomtoGiuliana said:

Regarding the beta blocker my specialist has said pindolol is best for POTS.  Perhaps your doctor could look into this.

Yes the reason for being unable to get out of bed is severe fatigue and also dizziness and weakness.

Severity of symptoms varies a lot from person to person and also for a patient symptoms can change over time.  Most people do improve over time.

Thanks for this - I see the pindolol is non-selective, so I will inquire with the doc about this!

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@Delta

i live alone so I can relate to the anxiety you feel. I am lucky & have family close by, if need be. I have fallen (fainted) or come close to many times home alone, it is super scary. My best advice would be to try & listen to your body. If you’re feeling yucky, then you’re feeling yucky & shouldn’t push yourself. I’m sure your mom & your husband know you’re not feeling well & need a little extra help until you start feeling better. It’s okay to ask for some help when you need it! 😁 hope it gets better for you soon! 

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I work from home and the people I live with have full time jobs, so I'm home alone daily for long stretches of time. I totally understand your anxiety. Something that always helps ease mine is planning.  Like mentioned above, some days getting up is hard(dizziness and fatigue for me) but I find it helps to eat and get some water before I move, but by the time I'm awake everyone else in the house is gone already - I plan for this by keeping snacks, water, and an extra dose of my beta blocker right next to my bed so I can take all three before I even get up. 

I also plan all my errands for the weekend/days that other people have off so that I never have to brave the store alone.  It's always been the hardest for me to make it through the grocery store and with how prone I am to dizzy spells and nearly fainting in the isles, it's just not wise for me to try it solo. 

I have bad day back ups for easy food, extra days planned into my work deadlines, and emergency 'kits' all over the house. (water, salt, meds) so that I'm never far from them when there's not people around to help. If I'm having a flare(really bad stretch of days/weeks) I have people that will call me on their work breaks to check in and make sure I'm okay and that helps ease the anxiety, too. 

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When my husband travels I always keep my cellphone on me and have neighbors/friends/family “on call” just in case.  I can no longer drive but do try to take it easier with everything, exercise, being upright etc.  Myhusband makes several batches of food that we freeze so I can just zap it and eat it.  Friends and neighbors check in and offer to pick up fresh food which I accept and online delivery of lots of other things.  My sister checks in a couple times of day anyway but she’s more vigilant when he’s gone.  It took me awhile to learn my limits and to accept help from others but I found that people, even neighbors I barely knew, are happy to help.  I pull out the disabled card (I am) if I need an unexpected service like the time a tree came down on our fence.  We have dogs so I needed a tree company to come take it down ASAP and a friend put up a temporary one.  I probably would have had to wait weeks otherwise.  I guess accepting help and being prepared are good for me and my loved ones peace of mind.

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I stay home alone for 4-10 hours about 4 times a week. I don't drive because I can pass out while sitting without very much warning. For the same reason I spend time alone mostly in bed where we know I'm safer, at least from falling. We live out in the country half hour or more into town so if I need help it takes a while for them to get there.  but have some great neighbors who are home almost all the time so able to call on them if I need something while family is gone.  My 3 dogs do keep me company and when I feel well enough to get in my wheelchair amd let the dogs out my sisters horse often comes to the door to say hi and see if I have a carrot lol! Even though it does pose some difficulty living in the country, I wouldnt trade because it is so peaceful and less stressful. 

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My husband works third shift and is gone for about 12 hours with drive time, so I am home alone at night with our young daughter for long stretches. We also live in a rural area about 10-15 minutes from town/nearest hospital. The first time I had to call the ambulance, they actually got stuck by a train and the same thing happened when they were trying to transport me to the hospital. So that's fun 😩

My parents live about the same distance away and are fine with us spending the night there, but I'm trying to stay home and stay on our schedule. I also kind of want to force myself to get over my fear of being home alone too - this illness has taken a lot and I don't want to give up my independence completely.

I totally understand the anxiety that comes along with being alone and never knowing when symptoms might hit. I keep my cell phone on me at all times and do my best to stay distracted by watching TV, reading, crafting, etc. If I let my mind wander, up goes the anxiety and what ifs! Texting with friends/family also seems to help and keeps me preoccupied. Do you have friends who may be able to come visit during the day a few times per week to break up the long stretches? 

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I've lived on my own now since 1979, wasn't so bad when working, but this illness has seen me off work for most of the last 16 months and now they don't want me back. Sometimes I wonder if all these symptoms are signs of my body saying enough is enough.

I actually quite liked it when I had the Ventricular Tachycardia as it meant people showing some concern for me. (The ambulance crew).

Every time I come here now my password is rejected so I have to reset it?

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Agreed with dizzytizzy.  When I wasn't feeling well it always helped me to communicate with others, mostly through phone calls.  It helps to occupy your mind and then you also don't feel alone.

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Every time I come here now my password is rejected so I have to reset it?

@Peter Charlton, I have asked one of the admins to try help fix this problem

 

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I just wanted to chime in really quick. My blood pressure doesn’t really go haywire but my heart rate does. I bought a Garmin HR (better than a fitbit because it is water proof) last year and it helps me manage. If i start to feel bad i look at my heart rate on my Garmin if it is less than 125 i am ok, but when it goes over that i go lay down for a bit. I can also adjust my shower temperature accordingly by going by my Garmin. I found it gives me piece of mind. Personally I don’t mind being alone but i also don’t do alot physically either. If i do anything i do it slowly. It helps that my teenage kids are homeschooled and they can help too. Good luck and try to stay sane 😉 

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Thank you to all who responded to this post!  Your ideas and insights are very helpful and very much appreciated!!

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