Does anyone live alone? How do you deal with it?

[Scott]

Hi, first time poster here.

Background: I had pots symptoms starting around 6 months back which started with severe diarrhea that came mostly with near syncopal episodes, not being able to get enough air, tingling and numbness in my extremities and face (especially the lips), tachycardia, blood pressure irregularities.  Interestingly most of this was triggered by eating.  At some point about a month in I got the first fever I've ever had in my adult life and everything kind of stopped, no more diarrhea, severe constipation instead, and difficulty breathing after eating.  I eventually got diagnosed at the mayo clinic after autonomic testing.  For whatever reason diazepam helps with my symptoms.  I eventually went on a low fodmap diet which helped with the postprandial dyspnea, and my pots was almost entirely under control after that.  When it wasn't I would take tudca from time to time and that also provides relief, although when I stop it I tend to have a full relapse with really bad tachycardia and I typically end up in the hospital.  Sadly my symptoms seem to be coming back after something like 2 - 3 months of minimal symptoms (probably related to starting vitamin d? this is the only thing that changed).

Anyway, my question is in the title.  I live alone, and far away from any family.  In the beginning my ex-girlfriend came to stay with me because I had no idea what was going on and no-one to help me, but she was reluctant to do so.  My family all have jobs and lives and can't really drop them to come live with me in a studio apartment.  I can't go live with them because I have a job that I'm probably going to lose because of this condition.  They live in the middle of nowhere with no access to any decent healthcare.  At least where I live now there are neurologists who specialize in dysautonomia.  It's terrifying being alone and having your heart rate skyrocket while your hands and feet go numb, wondering if this is going to be it.  They treat me terribly at the ER, I go proactively, sometimes I sit in the waiting room with the hope that if something does go wrong, at least someone is around to make sure I'm ok.  I've overheard nurses make rude remarks like "oh great, we have to babysit this guy again...".  I'm at least lucky enough to live in a building with a doorman, so I'll sometimes hang out with them and tell them I have a medical condition and to call an ambulance if something happens to me.  Other that I live in terror of something happening to me while I'm in my apartment where no one would find me for days.

Does anyone else have any coping techniques for living alone with POTS?

[Pistol]

@Scout - that is sure difficult to deal with. I also seek treatment proactively due to severe seizures from untreated flares, so the ER used to see me frequently and some staff treated me like an attention seeker. Thank god I have a great PCP who understands my symptoms and will fight for me when needed. --- I have a husband and he is always home and drives me to all my appointments, does the shopping and takes over transporting my teenage daughter. However - if they go away for several days I am also home alone and we live 1 hour away from any hospital. So I have a medical alert system for those cases. They know all of my medical info, numbers to close by neighbors and can alert 911 when needed. It is a a button I wear and can push for help in case of an emergency or if I just need someone to come over they will notify my neighbors. And if I am unable to answer they call 911. This is a great relief for me and my family knowing that in case of an emergency I do not have to get to the phone. we all know how difficult it is to explain our situation when we are sick!!! - I also wear a ID bracelet that says : POTS, syncope, seizures, give IV fluids on the front and my PCP's name and number on the back. It also alerts first responders to check my wallet for detailed medical info and medication list. This might be something that would work for you? It truly helps with the anxiety when I am home alone. -- Stay strong!  

[toomanyproblems]

I can't even answer in too much detail about my situation because it would sound too scary. I've just turned 65 and live alone in a rural area. I figure I've had a mostly good life so whatever happens happens. I make sure I have my cell phone with me all the time. That's my best advice. 

[StayAtHomeMom]

Have you thought about trying to get a room mate? I have a husband and kids who help me quite a bit. Maybe having someone just living with you would help out. 

Another thing I have seen is someone was taking about a service animal a while back. Their dog would warn them when they needed to sit or lay down so they didn't pass out. I thought it was a really neat idea. 

[p8d]

I am sorry that you are going through it.  I know how hard it is.  My husband is home most of the time and does everything, driving me to appointments, shopping, laundry etc. When I was desperately ill he had to travel for a few days at a time every five weeks and I had friends/family stay with me.  The first time he had to go see his mother out of the country for 10 days I was terrified.  I had a pouch for my cell phone that I kept on me all the time and all the neighbors and friends were on call.  I also hired a service to come to the house everyday to do whatever I couldn’t, cook, do dishes, etc.  we froze melas and when I couldn’t cook all I had to do was microwave them.  

Having said all that please know that “regular” POTS is not fatal.  I have seen three of the top autonomic specialists in the country and they all told me that.  Do all the self care you can.  When I get tachy I drink 8-16 ounces of fluid quickly and in 10-20 minutes my HR always comes down.  Lay down for awhile that also stabilizes things, sit up drink the fluids and wait to get up.  Are you using compression stockings?  Drinking enough and getting enough salt?  No hot showers?  Head of bed elevated?  They all help a little and every little bit helps.  I also suggest reading The Dysautonomia Project there are lots of good tips there. Exercise helps make the leg muscles stronger which also helps.  

I love the the idea of a service dog!  I have pet dogs but they are wonderful as company and calming (at times).  

[bombsh3ll]

Hi and welcome!

I can relate to what you're feeling, my situation isn't quite the same as I have a husband and kids, also my dad stays with us a lot to help out, but my biggest (probably irrational) fear is that my kids (9 & 5) will find me dead & be terrorized, say when my husband has left early for work and my dad isn't here. I always sleep easier when I know there is going to be another adult there in the morning. 

I know POTS isn't supposed to be fatal, but having next to no blood flow to your brain, plus all the red flag symptoms you are supposed to seek emergency care with ALL THE TIME eg chest pain, shortness of breath, passing out etc can certainly feel like it! How would you know if you ever did have a real emergency when you feel like that constantly?!

I like the idea of a wearable alarm, although you would have to be conscious to activate that, also a roommate or a service animal are good suggestions. If your building permits animals, I suppose even an ordinary dog as opposed to a trained service dog would help, as it would surely start making a lot of noise if it wasn't being fed or let out.

You could also make an arrangement for a family member to call you at a certain time, once or twice each day, with the understanding you have a phone on you all the time, so they could raise the alarm if you weren't answering. 

I hope you manage to find something that gives you some peace of mind. 

B x

[Peter Charlton]

Apart from one year in the mid-eighties when I let one of my rooms to a friend, I have lived totally alone since I came out of the Royal Navy in 1978.

Wasn't so bad when I was working, but whatever has gone wrong with me nervous system has lost me my job and I am on the verge of being housebound due to my symptoms.

I do have a couple of half-sisters and family in Sweden, they want me to visit but just the train journey into town for medical appointments knocks me for six.

I did have sustained, (as in every single day for up to 12 hours constant), Ventricular Tachycardia, but that was cured with an ablation, the most frightening thing was the feeling of suffocating I got until my ANS regained its regulation of my blood oxygen for a full year after beta blockers.

I have completely given up with the National Health Service now so completely alone. Fortunately my cognitive abilities are dwindling to the point I feel constantly drunk now so don't care.