Mydoggielovesme2

How funny! And sooooo true. You're quite the writer.

My guess is your body is fighting with it self because low BP and Heart rate. I'm sure our brains must realize there is a problem. Have you raised the head of your bed? Are you salt/hydrating before sleep? It's a pain to get up to go to the bathroom, but worth it to get better sleep, if even for a few hrs.

Because I was so deconditioned, I feel weak while exercising. HR and pulse all over the place. Usually takes anywhere from hours to a couple of days to recover. I am just so determined to make this work, I'm pushing through. Even if only able to do ten minutes at a time.

I truly understand the frustration of not being able to drive. I've posted this before, but when I went before a disability judge, he said if I was in an accident for fainting or anything related to this illness, that it could result in me going to prison! Sure put the fear in me. Funny thing though, Drs have told me not to drive, but never had me sign anything.....go figure.

SnowDrifter, just wondering what your BP is like? On the mornings when I can't wake up its usually because BP is sooooo low.

Oh me too!! I would have liked to start sooner, but family wants to wait until trip to Az (mayo) in over. But I am already doing a few things, they just don't know it. haha wishing you the very best. PM me sometime and let me know how it's going!!

Oh yes! This is a hard one to cope with. I'm sorry Spinner that you are having to deal with this at work. I'm home every day so I can control most of my surroundings and the sounds that go with it. Unfortunately this is just another lovely POTS symptom. I ALWAYS carry earplugs where ever I go. They are not very comfortable, but it's better than the alternative. It's just amazing to me that sounds can cause a potsi reaction.

My goals: continue with exercise that I started in February, get to appt at Mayo in two wks, change over to the Paloe diet by May. Try to have a more positive attitude. (tired of husband calling me "miss brown cloud") Enjoy the summer with my family.

That was a very nice reminder. Thank you for taking the time to post it. I really needed to hear something positive today. Again, very much appreciated.

I agree with Relax86, so many POTS symptoms feel cardiac. You really need to rule out these before acceptance. You should have an ekg, echo, stress test, and holter monitor. These are usually the basic tests for heart related issues. If your Dr does not do these, then I would find one that does. So what were the results of your tests so far?

Thanks all! The problem is they have a place about 25 miles out of town, by a lake in Az. The nearest town is quite small. They are 2hrs from Phoenix. I was able to find out a church group came by to visit, so am going to contact them tomarrow and see if they can help. Lel, we have tried to talk with them. It's just such a balancing act. We need to help them, yet they want to stay completely independent. But their health issues are becoming to major for them to handle. We HAVE to do something. Thank You all again for your care and concern. God Bless

I know! With me there is no consistency. It may happen once a month, then not happen for a year. Just so weird.

On really bad days, I can't go on or push through. I basicly shut down. Just this last wk I hit the " wall". I slept for almost 15 hrs straight.

Hi Akgirl, I have had this happen several times since developing POTS. I assume it's caused from stress. (From reading about it) All I know is its darn scary when it happens. Sometimes I even get this bright flash of light. I thought our house got struck by lightening once. My husband hates it because I'll wake him up from, my jerking awake and thinking something bad has happened. I have never taken my pulse when it happens, but I can tell you it feels like heart is going to pound out of my chest.

Thanks Spinner, I am hoping Mayo can give me some answers. Your ideas are interesting...1-3,5-7, would need looking into. 4&8 are things I try to avoid.

Bebe, Thanks for sharing. I'm so sorry for your loss. There is just no easy answers for any of us is there. My husbands sister is refusing to help. Says if they insist on traveling, then they just have to deal with it. ( she does not work, is healthy, has no kids at home, and was offered a plane ticket or gas money) I told my husband I would give up my appt at Mayo, so he could get off work now, but he does not want that either. So we will just have to hope for the best, and wait it out. Thankfully we will be down there the end of the month for my appt. maybe they will come home with us then????

Sorry all. I just needed a place to talk. My In laws travel to Az every year for the winter. Two years ago my father in law had a massive heart attack while there. Thankfully he survived. This year my mother in law fell, shattered her knee, and has had one surgery, with another one in a couple of wks. Both have other major health issues. Here is where I need to vent..........we can' t just drop everything and travel to Az to help them. I WANT TO! But my health won't let me. My husband can't get anytime off work. Plus we have our grandchild living with us, and she is in school. Before POTS I could have handled this. I would have made something work. Now.....I just feel like I'm failing our aging parent, when they need us the most. How crappy is that! I wish they would stay home, and not travel so far away anymore. See, how selfish I am.

Well I finish my Medicare allowable phys therapy visits this wk. When I first started, the therapist had these certain goals she wanted me to reach. It's been quite a learning curve for both of us. I am far from reaching those goals, but I am feeling some better. It's given me a little more energy and stamina. So now I need to try to continue doing something at home, so I don't go backwards. Wish I had a recumbent bike......but no matter, I will keep on exercising. I will get stronger, I will feel better!!

Hi Rissy, thank you so much for sharing your story. I have been reading up on the diet since your post and am trying to start next wk. My husband is basicly on board, but still a little doubtful. Could you share this part of your experience? Did family support you? Wishing you the very best.

I've fallen so much(passing out) that I have injured my shoulder also. I held off getting injectins for a while because of possible side affects, but I just could not stand the pain anymore. Ive had three injections so far. They did not seem to bother my POTS, but you have to remember, everyone is different. I don't think I will have anymore though.

Angela, may I ask how this was dx'd. Is there something specific I can ask my Dr to do? I feel so bad when this happens. This is the one thing that REALLY scares me.

For me the long term memories are just gone. No amount of reminding me of them helps. As far as short term memory loss, I chalk up to the Brain fog. Because not only do I forget what I may be doing, but things like speech, breathing, ect are involved. And yes SnowDrifter it it very frustrating.

I love to read, make jewelry( beading)and do puzzles. I also spend a lot of time on the computer or I-pad. Every year I try to put in a small garden. This is one of the most therapeutic thing I have found. It is sooo rewarding to see and eat the fruits of your labor. I play the guitar. And play cards and board games with family.

I have terrible long term memory problems. My husband can remember every detail of every thing. Not me. I have huge chunks of my life that are blank. I truly understand your frustration when people say, "don't you remember"! Sometimes I worry if I have repressed things, or is it this illness?

I'm not on bb either, but have this problem also. This symptom started for me about a year ago. I do not have it all the time,and can not seem to find what triggers it. I feel as if I can't get enough air into my lungs. Talking is very difficult, can only say a few words before gasping for air. It feels like someone is squeezing my throat, while pressing on my chest. Thankfully it's not happening all the time!