Nauthiz Posted July 21, 2009 Report Share Posted July 21, 2009 I feel this way lately worse and worse. I probably leave my house maybe once a week on a short errand maybe. I read about some people hiking or going swimming etc i feel like i would probably collapse if i did any of those things. Just walking around my house i feel like im going to collapse its bothersome. I probably sit/lay 98% of the day. Does anyone else have this problem, have been able to become more active after trying more? I just feel aweful and fear it is something even worse than dysautonomia which is hard to believe there is worse things sometimes . Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted July 21, 2009 Report Share Posted July 21, 2009 Mate I know exactly what your going through but for me it improves. Progress can be slow sometimes though. Quote Link to comment Share on other sites More sharing options...
Nauthiz Posted July 21, 2009 Author Report Share Posted July 21, 2009 Mate I know exactly what your going through but for me it improves. Progress can be slow sometimes though.i really hope what i am going through is progress. It can be called that in some ways but other ways not. Its like i am better from the prior symptoms i had, but i have new one now. really *****. Im trying to put humor into it and look at the positive but it is hard too without and real signs of improvement im going on 14 months now. Quote Link to comment Share on other sites More sharing options...
gertie Posted July 21, 2009 Report Share Posted July 21, 2009 I'm sorry you're not doing well. I think it's been 3 weeks since I did any errands. I was getting dressed Sun to go out for awhile when a Meniere's attack hit & I had to stay in bed all day. I couldn't stand up, couldn't focus my eyes, nausea. After 3 days I still don't have the energy to walk. I was thankful I wasn't on the road when this hit. Everytime I think things are getting better they seem to get worse. I've found out there are things worse than Dys/POTS but when they all hit at once it seems impossible to get through it but we will. How long have you been this way? Have you had blood test done lately to rule out other problems? Maybe you should see the doc & be sure you're doing all you can to get better. Let us know how you're doing. Quote Link to comment Share on other sites More sharing options...
Broken_Shell Posted July 21, 2009 Report Share Posted July 21, 2009 When I was first diagnosed I wasn't feeling well, but I could still attend school, drive, exercise, care for myself, etc. That was 7 years ago, and I that I didn't feel well back then, but how I was would be 100% improvement from where I am now. I am unable to care for myself consistently or leave the house. When I do go out, it is just to sit in the store and wait while my family does errands for me. For the most part I can't drive, do any type of activity, do things around the house, etc. However, my situation is complicated by daily episodes of hypoglycemia and severe myofascial pain and headaches. So of my autonomic symptoms have improved in the past 7 years, and some have worsened. I don't think that there is any good way to know what will happen, you just have to hang in there, don't give up, and make lots of lemonade with all those lemons life gives you!~ Broken_Shell Quote Link to comment Share on other sites More sharing options...
Nauthiz Posted July 21, 2009 Author Report Share Posted July 21, 2009 I'm sorry you're not doing well. I think it's been 3 weeks since I did any errands. I was getting dressed Sun to go out for awhile when a Meniere's attack hit & I had to stay in bed all day. I couldn't stand up, couldn't focus my eyes, nausea. After 3 days I still don't have the energy to walk. I was thankful I wasn't on the road when this hit. Everytime I think things are getting better they seem to get worse. I've found out there are things worse than Dys/POTS but when they all hit at once it seems impossible to get through it but we will. How long have you been this way? Have you had blood test done lately to rule out other problems? Maybe you should see the doc & be sure you're doing all you can to get better. Let us know how you're doing.just over a year i have been feeling pretty bad. I have had all the tests i can think of really. Im gonna try licorice root soon and hope that helps me. Quote Link to comment Share on other sites More sharing options...
EarthMother Posted July 21, 2009 Report Share Posted July 21, 2009 So sorry this bout has been so bad. I haven't been leaving the house for a couple years now. I know what you mean about one system improving as another ones breaks down. Seems we just shift our healing crisis from one set of issues to another. At some points the weight loss and intense nausea are the worst, other periods the hyperadrenergic surges rudely rule my day, then at other times its the knock-me-down-dead feeling of 'flu-like' symptoms that can keep me in bed for days. It seems so common for some of us, I'd like to believe its part of the healing journey. That somehow our body is tidying up each corner of the autonomic system and eventually we will get some of our fuctions back.Its a fine line about how hard to 'push' oneself. I am able now on a rare occasion to get out to a local store -- now that I have my wheelchair. I can only stay 5-10 minutes, nothing actually 'productive', but I think of it as 'exercise' more than anything else. On 'bad days' I don't push myself. I accept that my body is having a difficult adjustment and I tend to lay low and wait it out. But even on the 'good days' when I make a trip to the garden center of the hardware store or petsmart ... my body exhausts quickly and I am literally wiped out for hours afterwards. But I still go, because I never know if indeed 'this is as good as it gets' ... so my goal now has shifted from 'waiting' until I get better to seeing how to 'be sick' outside the house. Or even to 'be sick' alone in the house ... which is something else I haven't done in a very long time.Keep your humor, if it doesn't out right heal you it will be your saving grace. And remember, progress doesn't always look like what we thought it would. ~EM Quote Link to comment Share on other sites More sharing options...
Rene S. Posted July 21, 2009 Report Share Posted July 21, 2009 I feel this way lately worse and worse. I probably leave my house maybe once a week on a short errand maybe. I read about some people hiking or going swimming etc i feel like i would probably collapse if i did any of those things. Just walking around my house i feel like im going to collapse its bothersome. I probably sit/lay 98% of the day. Does anyone else have this problem, have been able to become more active after trying more? I just feel aweful and fear it is something even worse than dysautonomia which is hard to believe there is worse things sometimes .I'm so sorry and I can relate, unfortunately. Two weeks ago I was able to drive around locally and run into Rite Aid or Walgreens, pick up a few things. Then last week, everything changed. My b/p skyrocked while driving and my h/r also. i went into major palpitations and now I know I can't drive. I've had this illness since Oct and it's so frustrating. I hate being alone in the house knowing that there is a huge world out there that I used to enjoy. I have given up on exercising and just climbing the steps takes my heart rate to 117. The drs don't have a clue and the adrenal surges are so much to bear. Please PM me if you feel like chatting.Rene Quote Link to comment Share on other sites More sharing options...
Maxine Posted July 21, 2009 Report Share Posted July 21, 2009 The wellbutrin I take helps me be more functional. I take just a baby dose of 100mg SR. A lot of medications make me want to climb out of my own skin, and what is so odd is that wellbutrin does this with quite a few POTs patients. I was reluctant to try it, but when I did there were no side affects that I remember. It was pretty clear after being on this for a while that it was helping. However, it caused weight gain I wasn't happy about, but I'd rather have a few extra pounds then be bed bound. I forgot to take it one day, and it really showed me how much this med made a difference. I had tremors, adrenaline rushes, and had tachycardia----even on my beta blockers. I felt prone to a panic attack all day. The next day was so much better when I took the wellbutrin. I'm by no means at a normal function, but I can get out of the house on my own some days. I have to listen to my body, because I'm limited. If I don't pay attention closely to my body signals to slow down, my body just shuts down-----like a switch goes off. That's how quick it is. It doesn't help the fatigue completely, so this limits me too. It's just good not to feel on the verge of collapse from doing simple things like walking across a room.Compression hose help a lot, but they wreak havoc on my back when I have to put them on, so I rarely wear them.Hopefully they'll come out with compression hose that will be easier to deal with, and patients will be more compliant with them.In the beginning with my POTS, I coudln't even have company, as it would be so overstimulating that I would shake. I don't think we are necessarily having a panic type issue, it's just that our body has to work so hard to do simple acts like standing and sitting that we get overstimulated from the adrenaline surges we get to keep us from collapsing.Having my handicap sticker makes a big difference for me, as does my car starter to get the heat or AC started before I get into the car. It makes a biig difference. If I didn't have this I wouldn't be able to get out on hot or cold days--------as just walking a few feet in either too hot or too cold weather can make my ANS/POTS issues go nuts.I think the wellbutrin helps me vasoconstrict, but it only works to a point. I still have falls in BP that are sudden, and this is when the switch wants to go off.There's still a gradual fall in blood pressure also, as my PCP saw last week that made him cancel my virtual colonoscopy and start looking into having it done in the hospital.I've had ups and downs, and this may only be temporary for you. In the beginning I could barely get out of bed, and now I can get out most days for small amounts of time if I need to. I can drive, but not long distances-------------over 30 miles. I can take a walk around the block, but would like to work up to a mile. I know I can't do this yeat, as walking in the mall for any length of time makes me feel like I'm in heart failure if I walk too long-----------this is when the blood pooling gets so bad that my heart doesn't have enough to pump.It think you'll do better, and at some points you'll even feel almost normal. This is when you need to be extra careful, as those are the times I tend to over do it, and I end up having a set back. Pacing your body even on your good days is so important. Maxine :0) Quote Link to comment Share on other sites More sharing options...
bjt22 Posted July 21, 2009 Report Share Posted July 21, 2009 I don't go out very often. I don't drive. Shopping is generally no longer much fun. Hiking or swimming or other athletic pursuit? No way.On a good day, I can get dressed, cook dinner and stay downstairs with everyone for awhile. Or, I can go out and maybe have dinner and go to one store. I can't do all of these things in the same day. A couple of weekends ago, we went out with my brother and his family on a Sunday afternoon. I wasn't out of the house for the rest of the week. In fact, I was uncomfortable being up out of bed, sitting up, for more than maybe a half hour at a time. And this is a GOOD period for me, overall, as far as symptoms go. Quote Link to comment Share on other sites More sharing options...
morgan617 Posted July 21, 2009 Report Share Posted July 21, 2009 I am almost completely home bound at this point, but I do have other issues. morgan Quote Link to comment Share on other sites More sharing options...
ladyt Posted July 21, 2009 Report Share Posted July 21, 2009 hi..it might be a small comfort, but u are not alone in beeing more or less bed/sofa/house bound.. I have been so more and less for more years than i whant to remember... I have severel whelchairs and someother stuff, it helps me on god days and bad.. on god days it makes it me abel to leave the house somethimes.. And being abel to leave my house is essensial for my mind...=) Staying indoors for weeks whitout being abel to get out is not fun.. But still my time is mostly spent in front of tv.. And my dvd collection is growing qouite bigg,,,=)I hope u all have some nice time this summer... Quote Link to comment Share on other sites More sharing options...
Kitsakatsa Posted July 21, 2009 Report Share Posted July 21, 2009 I have two cents that you may not want. There are meds that may make the difference between working and bed bound. I notice from your sign-off that you are trying the wholistic route. It might not be working. My way might not be working and you could argue that my meds are damaging me even more. There are days I would agree with you, but on the days I miss my meds I am in bed. Also, sadly, I gravitate towards whole and organic foods- they just taste better. Every time I do- I miss out on the salt and I feel much worse. I don't think there is a right way. I respect your beliefs. I just know that eating totally healthy and taking 0 meds would put me down in bed. I wonder if there is a middle ground somewhere that might help you. Keep Hope, Kits Quote Link to comment Share on other sites More sharing options...
flop Posted July 21, 2009 Report Share Posted July 21, 2009 I am someone that is in the middle. For me I am pretty bad but compared with others I am probably doing really well.I had to give up work a year ago but I still mange to get out of the house most days. I will get up and go to meet a friend, come home and go to bed for an hour. Then get up and watch a DVD or use the computer. Later in the day I try to go out again maybe to the supermarket or to get a coffee and read the paper in a coffee shop.I know what my body will allow me to do and I am careful not to try to do more than that. Being too busy or trying to fit too much into the day will make me crash for the next few days. I generally do better in the winter than in the summer as so many places in the UK don't have air conditioning.The one thing that my doctor told me when I first became ill was that I should never lie down flat all day. He said that i would feel much better lying down but that if i stayed flat all the time my blood pressure would adapt to being flat and then it would be even harder for me to stand up.Even if I feel horrible I force myself to sit upright in a chair with my legs down for at least 30 mins a couple of times a day. you can lie down afterwards but that period of being upright is important.It sounds like you have already found that lying down a lot doesn't fix POTS. I would advise that you slowly build up your tolerance to being upright - it might be propping yourself up with pillows initially. Once you can manage to sit up for a short while then consider borrowing a wheelchair so that you can get outside. It might only be into the garden or to pop to a friend's house but getting out of the house is so important to help keep your spirits up.Good luck,Flop Quote Link to comment Share on other sites More sharing options...
Dawg Tired Posted July 22, 2009 Report Share Posted July 22, 2009 Right now, my world is couch/bed. We are having a family reunion the end of this month, but I have already warned everyone I will NOT be going on the outings.About half of the time I can make church once a week. Quote Link to comment Share on other sites More sharing options...
erikainorlando Posted July 22, 2009 Report Share Posted July 22, 2009 I just keep trying...I think that is important...and thank God for my kids...they keep pushing me. I think I am like Flop in that I go for a couple of hours....have to lay down....then I can go some more. My friends laugh at me becauseI can't say go to lunch and then something after...I could go to lunch...lay down for a coupe of hours and then possibly do something else...Somedays I was getting very down and discouraged. I try to calm down tho and realize that nothing lasts forever...and something will change...toprol has made a world of difference and so has resting...in between stuff...someitmes I can even push thru stuff...but not very often...You hang in there... you are certainly not alone...Erika Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted July 22, 2009 Report Share Posted July 22, 2009 For me the disability has varied from being pretty much total - to where going down to the store is beyond me due to dizziness and mental confusion, to other times where I can go shopping ok and even run at times. Wish I could get back to those places i can tell you. Right now Im off work sick yet again... Quote Link to comment Share on other sites More sharing options...
Janey Posted July 22, 2009 Report Share Posted July 22, 2009 Hi, like everyone else, it varies from day to day. Sometimes I have to lie in bed all day, still, can't move, eyes closed, can't eat/drink/talk, then on the occasional day I feel like I want to go out clubbing and dancing! I'm sure if I got there though and started dancing, I'd want to go straight back home because it would make me feel awful, but you know what I mean! Quote Link to comment Share on other sites More sharing options...
Kathy_Ireland Posted July 22, 2009 Report Share Posted July 22, 2009 My life is bed and the couch too. I've only managed to get as far as the couch in recent months so it's still a bit of a novelty and even at this level of disability just being downstairs for a few hours every day feels more like real life so I love it. On exceptionally good days (there have only been around 4 or 5 of them them this year) I have managed to go out to a cafe with my mum. There are only 2 near my home that she can park right outside the door from so they are the ones we go to. It's absolute heaven when that happens and I honestly feel like kissing the ground there on those days! That said on 3 of my 5 journeys out I have felt horrible through and it's taken all my strength to stay upright, not vommit and not keel over so they weren't exactly fun. Two times were completely comfortable and it was just incredible to sit there for 20 mins and take it somewhat for granted and enjoy chatting and looking around without feeling like my whole body was in full scale emergency mode with my heart thumping ,the whole world zooming in and out of focus in my field of vision and the horrible weakness. My longest trip out to date has been 30 mins from leaving the house to arriving back at it and it's usually taken a week to recover from unfortunately. I'm better than I was but I'd kill to be able do those tiny things even once every week at this stage. Quote Link to comment Share on other sites More sharing options...
potsgirl Posted July 22, 2009 Report Share Posted July 22, 2009 I'm kind of in-between. I can usually get out a couple times a week, for perhaps an hour or so. I try to walk for 1/2 hour 3-4 times a week, just taking it easy. It's a priority to me, so that means it's usually the one thing I get out to do that day. The rest of the day I have to rest a couple of hours after lunch, and then hang out in my recliner and read, watch tv, or be on the computer. If I want to try to eat lunch out, that's the only thing I plan that day. Two days a week I call "stay at home" days, where I do nothing but rest, especially if I know I have a big day coming up. I don't like taking many drugs, and I'm very intolerant of them, but if they would help improve my quality of life, I would consider using them. Unfortunately, I can't tolerate Florinef or Midodrine. I do take an SSRI and Klonopin, though, and these do help. I agree with many of the others who have responded to, that every doctor I've had has said that the more you can sit up and not become deconditioned, the better you'll feel. I like the idea of propping yourself up with pillows as a start.Let us know what you try and what works for you. I hope you can start getting up and out slowly....A wheelchair works for me, too.Cheers,Jana Quote Link to comment Share on other sites More sharing options...
janiedelite Posted July 22, 2009 Report Share Posted July 22, 2009 I have the same activity level as Flop and Erika. The last couple weeks, I've been surprised at how much I can do and at how steady my pulse and BP have been. But about 6 weeks ago, I had a couple weeks where I couldn't move or talk without stirring up symptoms. It's tough because during these good phases I can't help but get hopeful... I just keep reminding myself to enjoy it while it lasts. There are usually a few days a months when I feel like I could even go back to work, but it's the variability of my symptoms which prevents me. Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted July 22, 2009 Report Share Posted July 22, 2009 I have a cup of energy a day. I have to use it wisely and choose how to use my precious planet time spent in between the hospital hydrations 2 days a week, doctors appointments to manage all areas of my dysautonomia, flares that set me back and put me in the hospital, setting up cab rides, and staying in touch with friends and family. i'm basically bed bound, but one day a week i fake it the best i can with an extra pain pill, to do a family day with the kids and grand babies. I pay for it the next day, but it's worth the memories. This Friday we are going to the zoo, but I'll have my walker with the seat. I'll need to be very, very, careful as I just spent 4 days in the hospital from our last outing going to the beach. the ocean, that i hadn't been to the ocean in years.SO, you are not alone.neuro wise i'm failing and falling more and more.is it partly from all the meds?is the cure worse than the outcome? no, but the meds have really crappy side effects for me.quality of life especially living alone is very lonely.i think those who have love in the home do better. right now i'm so tired i'm falling asleep, must have been the long ride home in the taxi, that did me in. blessings and love,bellamia~ Quote Link to comment Share on other sites More sharing options...
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