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Pots Recovery & Secondary Aniexty Issues

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I have been able to "recover" from 2 POTS episodes in the past but this current one has been the longest and most severe(complicated with my new flat feet and joint pain). Even though I still feel like I can do very little, I'm alot better then I was 1 year ago. 1 year ago I was happy to be able to shower and occansionally help with laundry/light cooking. Now because it is summer and the kids are home I'm forced to do more. I might be achy at the end of the day or occasional feel dizzy and have to lay down asap I know I should be able to do more outside of my "safe house" but I get nervous of the thought of actually trying to go out alone. My HR is still high when standing but I have gotten used to it and how to deal with it and the warning signs. So far I have tried the very gradual approach to getting back out but sometimes what I call secondary aniexty kicks in(or is it adrenline surges from h-pots?).

For example. My child's school is 2 miles away. (I have never fainted from pots so I feel okay to drive short distances). I drive to the school with my husband in the car. My HR is 90-95. I tried to do this 2 times a week. My child had a half day and I had to go get them alone. I took the same 2 mile drive alone and my HR was 150 and I by the time I made it home(it didn't help that a fire truck went by and the sudden siren shocked me) I had an adreline surge and was all shaky. Another example is I can go to the grocery store for about 15 minutes with my husband and kids, if my HR is too high at checkout I go to the car. I tried going into the store myself for 10 minutes and by the time I was at the checkout I was shaking.

I have tested myself at home. I have stood at my doorway talking to my neighbor for 30 minutes and I was okay(a little dizzy but I know I can do it). During the days I am up on my feet more then ever, making the kids snacks, filling water ballons, doing crafts and even shotting a few hoops. My mind knows that since I am at home if I feel dizzy or my HR is too fast I have a place to lay down right away. For some reason I think being H-pots makes it worse when I go out I get anxious because there is no place to sit down. If I can stand at home for 30 minutes I should be able to go to the store for 30 minutes.

Just curious how people have gotten back into the real world again after being housebound?

My doctors have offered my all sorts of meds. I perfer not to be on anything I have to take for a long period of time of wean off of. I have taken kolonpin on and off over the last 15 years. I take .5 a day and an extra .5 if I have a huge adernline issue. I took 1.5 mg in one day which is the most I have taken in 15 years because I had to go to a long event at school. It helped but I felt a little sedated which I didn't like. Severeal dr's have said to up 1.5mg klonopin a day while I'm getting the confidence to go out again. They say if I have taken it for 15 years and I havent needed a higher dosage till now I should be fine weaning back .5. One dr offered my Xanax which I do not like how it makes me feel(HR feels fast mind feels slow). I have been offered lexapro, cymbalta, effxor, and paxil. Since I have h-pots and all my dr's are very unfamiliar with pots or h-pots I scared of trying one of these since some are SSNI and some are SSRI's. I also watched a neighbor go through come off of cymblata when she lost her insurnace and it was horrible.

My goal by september is to be able to drive to the school, drive to my dr's office and drive to the store for quick things like milk. I would like to take some burden off my husband who is running around like crazy all day. I have 10 weeks, should I try it medicated or unmedicated and which meds have helped others?

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Wow, this is exactly my situation. I don't have kids, so it's a little bit easier for me, but I have the same anxiety as you are describing. I haven't been anywhere alone in last 3.5 years. I go everywhere with my better half and I feel very uncomfortable when he is not around.

I am totally fine at home as well and I'm finding it difficult to even get the rubbish out and the bin is just around the corner of our apartment building.

Shops are especially hard for me, because all the lighting, colors, noise etc. stimulates me to a point when all I want to do is get out of there as soon as possible. I leave to wait in the car as well, if there are long cues at the checkout, but it upsets me a lot, because while at home I feel almost normal, but as soon as go out I'm reminded that I still am a long way from feeling normal.

I don't know which type of POTS I have, but I'm suspecting it's hyper.

I don't want to take any meds as well, but I am taking supplements. I find that magnesium gives me a relief and I'm feeling more at ease when taking it. B complex is also good for anxiety, but I don't feel such a dramatic difference when taking it as with magnesium.

I hope you'll be able to get out of dreadful circle and will share your experience how you did it.

My GP suggested psychologist, who specializes in cognitive behavioral therapy, but since I'm not able to work we can't afford it.

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I can really relate to what you have described. I was afraid to go anywhere alone for a long time. Then my husband left me and so I had to do things alone.

Here are the things that helped me. I got a "cane chair". It looks like a cane but has a tiny seat attached that you could pull out. It was my security blanket for check out at stores because that is where I would feel dizzy from standing still. I rarely had to sit, but having it made me feel better. People were really nice to me when I would sit down in the check out line. I just said I had low blood pressure.

I got a medical bracelet where I could put a bunch of info in a tiny little compartment, that made me feel more secure in case I fainted.

I have never fainted, so I adopted this mantra, "I have never fainted, I am not going to faint in the store" I would say it to myself over and over when in a store.

I did increase my Lorazapam, and instead of taking it once a day before bed I started to take again in the AM and it made me brave.

Interestingly, when I drove, when I felt the most anxious was when I was at a red light. I think they just proved it was anxiety and not just POTS that was making the trip difficult. I didn't have time to worry when the car was moving.

I told a doctor at the Mayo clinic how I felt fine walking around the house but if I went for a walk in the neighborhood or a store, I was really dizzy. She told me that we can retrain our bodies to be upright and to adjust to things and that the more I walked, the better my body would be a able to deal with it. I think she was absolutely correct. Forcing myself to leave my security zone has made a world of difference in quality of life for me. Staying home just fed the fear of leaving home for me.

Short trips to the store became long ones and now, as long as it is a good day, I can do quite a bit. If I feel dizzy at a store, I just have my little mantra "I can do this". I still have days I don't go anywhere, but to have days where I can go places alone is such a gift.

I still have a hard time driving very far on the freeway, but I can often drive 40 miles or more which is really huge for what I was like at first.

Every time you go to the store, or the school and make it home, it should make the next trip easier. Since it is easier for you to do these things when someone is with you, you KNOW that at least part of the issue is anxiety and fear.

You can do it. I know you can. And you will be less anxious every trip. Anxiety or POTS never killed anyone.

The one thing I will say is at one point I had to pick my kid up from school 3 days a week and I HATED it. I always had to have a back up plan in case I didn't feel well and the pressure that I HAD to do it made it harder for me. It was the trips to the store, where I could pick the time and day that made the transition to doing stuff alone easier.

Good luck.

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Thanks for your kind words Jan.

Before my offical POTS dx I used to do exactly what you said, tell myself over and over again that I was going to be okay when I was out. I got out gradually like I am trying to do right now.

I think the big turning point was seeing the numbers when I got formal dx. When I was at the mayo clinic they did a little reinactment of a trip to the store. They took my vitals before and then after. The afters numbers shocked me. The before were 120/70 HR 78 after numbers 50/30 HR 181. I felt like no wonder I felt so bad at the grocery store. The numbers on one hand justified I was really sick but on the other hand scared me because I felt I could no longer tell myself you are going to be okay, because 50/30 isn't okay!

Right now when I go out I have my pulse oximeter on all the time. The numbers make me feel better and it kind of warns people I am sick. It also has helped at the checkout, most of the time I can skip ahead or they open a new line if my heart rate is high. 2 of my doctors told me to stop using the pulse oximeter, that it is a crutch to my recovery. I have cut back as much as I can but I still feel better especially when far from the car using it.

I have also wondered is making your HR go up and down alot bad? One of my favorite things is yard/garage sales. I have a friend that will drive and Im a quick shopper, but is is bad to go from sitting in the car to up at a sale , 15-20 times in 2 hours, making your HR go from 75 to 150 and back to 75 20 times in such a short time bad? or is it just better to be getting out and might be helpful over time.

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I don't know this for sure, but I tell myself that raising my heart rate is like aerobic exercise and that is good for a person. I also think if you do it enough, your body will learn how to deal with it. My heart rate doesn't go as high anymore. At least I don't think it does, I don't check anymore.

I can understand using the pulse oximeter and how it can be a comfort but also a stress. I used to take my BP often in different positions and log it and log how I felt. I was pretty surprised how it wasn't a good indicator of how I felt. When it was REALLY low, I felt light headed, but sometimes when I felt horrible my vitals were pretty good. I used it so often, the rubber bulb wore out and I never got a new BP machine. It was like being released from prison.

After my BP machine broke, when I felt really horrible, I would kind of panic and think, "Oh no, what if my BP is really low?" But then, what would I do if it was? Nothing. It really hit me when you talked about how scary it was after you learned what your vitals were. It was like that, only in reverse when I stopped taking my BP. It used to be if my BP was really low, I would start to feel sicker, even if I was doing fine before I took it. It was like getting over an addiction at first, it was hard not knowing my vitals.

I am not sure if it is the meds I am on (Florinef and Lorazapam), or if it is because I forced myself to exercise, or if I retrained my body, or what, but I am doing so much better than I was 10 years ago.

I do still have to talk myself into going places. Often I kind of chicken out, "What if I don't feel well if I go". And if I don't go places I want to go, I will have a little pity party all by myself. If I have a ride, which helps if it is an evening event, I tell myself, I will feel the same if I am home or if I am out, so why not go out.

I would love it if you up date me on how you do with this. I am cheering you on.

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I find that ignoring my symptoms does not necessarily make it go away. Of course anxiety makes it all worse, but mine happens without anxiety added in at home. If my b/p is at 170/110 standing for 10 minutes, I can't ignore it and expect it will go away. Eventually it will get to the point that it will either drop and make me faint, or continue to rise. I am the kind that needs to lie down when that happens. I could see me lying down in line at the store. :lol:

For me, my POTS is ever constant. I can't stand up at home and be okay, and then go to the store and have POTS issues. That is why I cannot go to the store, or much of anything else. When the day comes that I can stand at home with a great lessening of all the POTS issues, then I will be ready to go out and stand at events. I so look forward to that day!

For me, my POTS is just like my hypoglycemia. If my blood sugar gets low, I can't ignore it and expect it to get better. I will eventually pass out. My POTS problem is exactly the same--I have to address the symptoms.

I have to create the environment to keep my blood pressure and pulse at a normal level. Just like my blood sugar, I have to eat every two hours to keep things steady.

I know everyone is different, with varying degrees of POTS, so I'm just saying what my reality is.

The one plus I have noticed in the last couple of months is about a 50% improvement in my anxiety, especially social anxiety. The ONLY thing I've done differently is gone on a spree of taking my prescribed vitamin D that I had been putting off for about a year. I have no clue if it is related or not.

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I think where we can really encounter a problem is if we're really not sure where our symptoms are coming from and I fit in that category.

Do I just feel creepy/crappy and it is safe to push through or is it a freaky high or low bp, blood sugar, or some other sign that needs to be paid attention to?

I am unsure at this point.

I am choosing to stay on bedrest for the most part just because of my weight but as I gain weight I will try to do more normal things and just see how I do.

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I have the same issues and completely understand how you feel.

I do try to go out by myself, even if for a short time. I try to park close to the store so if I dont feel well I can sit down. But I still cant go food shopping or drive too long myself, definitely not like I used to.

I do feel much better when my husband is with me and waiting in the car in front,

I wish I had better ideas but can say I understand you and go slow.

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I think the anxiety will get better in time because as you are able to do more things outside your home, you will find 'safe' places to rest if need be. When I drop my daughter off or pick her up, and school is also about 5 miles away, I tell myself that if I start to flare I can always rest in the car until I'm able to drive back home if need be. I just do lots of mental notes as where I can rest if need be when I'm out and about, and when I'm too ill or weak, I've learned not to push myself too hard or it back-fires and than I end up having more anxiety about flaring when out and about the next time around. Basically you described how I live exactly, even the activities you do are pretty much the same!

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  • 1 year later...

I take valium when I have to accomplish something big such as flying (I just moved), going places where I have to wait in lines, etc. Interesting. that 1 took 1/4 of Valium twice on my 1hr 20 min flight (plus usual time at the airports), rented a car, drove 2 hrs with the help of a Navigator. The whole trip took 7 hours and I made all by myself. Was not easy, lots of sniffing of "Panic button" , controlled breathing, etc. But I made it. Valium smooths brain overstimulation. Now just thought of going to a grocery store terrifies me. I hear somewhere that colored glasses might help with that. I go to BodyTalk sessions, do Pranayama breathing as well as fire breathing plus meditations. Time will tell. It seems that early mornings I feel better.

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1. OP - awesome, great, wonderful description of what daily life is like! i know a lot of us can relate to that. sometimes just sharing makes a difference, so thank you for your post.

2. colored glasses? i'm interested. please, tell more! i have always had a problem with getting overstimulated. ear plugs are my friend.

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