Mydoggielovesme2

Mornings are bad for me also. I get headaches around 4 am, that last until about 6pm. Then I often feel the best I've felt all day. I will say something that helped was to take water to bed, I drink a large amount just before sleep and get a big drink about 2 am.( Gotta go pee) It's kind of a pain, but it did help a little. Hope you find something that helps you.

When you find that place, we'll all go....lol.... Glad to know its not just me. Sometimes with all the crazy symptoms we have, I start to second guess my myself. To think a weather change can put ya to bed.

Do your migraines get better or worse? Mine get worse.

Just wondering if anyone else is bothered by low pressure systems? We have a storm coming in AGAIN, and I can really feel it, as I always do. I get more short of breath, more fatigued, and just over all feel worse. This has been going in since moving to Colorado, where I generaly feel worse anyway. Also does elevation affect your POTS? When taking a trip, we had to go over a mtn pass, and it was all I could do not to pass out, and my chest felt like it was going to explode. This has happened every time we have traveled to higher elevations in the past few yrs. Any thoughts?

Spinner, I hope your wife is more understanding now. It's took my husband a while to realize just hope bad I felt.)))))

Sorry for miss spelling--- I hate this brain fog!!

Joyagh, please let us know how you are doing. Those are very scary symptoms.

Welcome Terry! I too have my first appt at Mayo Azi in march. Hope you get some answers that help you.

Spinner, I hope your wife is more understanding now. It's took my husband a while to realize just hope bad I felt. I think because I got sick so suddenly. Anyway, I too tell people I have a heart problem that keeps me from doing things. For some reason when you use " heart", they are more accepting.

I have chronic hypotension (80/60 average) and yes it causes extreme fatigue, and numbness in hands and legs. At times I have obvious pooling, but not always, yet still get the numbness- tingling sensation. I am not on clonidine, so don't know how that might affect things. Probably not much help, but I hope you get to feeling better soon.

I think several in my family have dysautonomia. Im just the first one trying to get some answers. Real answers, not just... its all in your head. And yes its very scary. I will be sooo glad to get to Mayo in March to start trying to figure so of this out!!

Oh Kim, I am so sorry.

OLD FRIENDS: They will not go quietly, the dogs who've shared our lives. In subtle ways they let us know, their memory still survives. Old habits still make us think we hear a barking at the door. Or step back when we drop a tasty morsel on the floor. Our feet still go around the place the food dish used to be, and, sometimes, coming home at night, we miss them terribly. And although time may bring new friends and a new food dish to fill.... That one place in our hearts, belongs to them.... And always will.

Deepest Sympathy

Wow, people just don't get it do they. I have started to to print out info for my friends, and ask them to view the video on POTS. Some are responding better now. more understanding. But when family doesn't understand, that really hurts.

Thanks, I just read this and am excited to try. I appreciate anything more natural. And it sounds good!

Welcome Aimes, I'm new here too. Just so you know I am finally seeing Dr Goodman the end of March. I was referred by my Dr and still took 2 months to get OKed for appt, and another month and a half of me calling every day to get appt. So hang in there and keep calling.

Kim, Thank you for thoughtfulness. This is such a great forum! No matter what the issue is, someone is there with a word of encouragement. Wish I would have found you all sooner, but so glad to be here now.

I've been on Ativan for 5 years now. My Drs says I may need to be on it the rest of my life. This is the Only med that allows me to get any sleep. Prescribed by GP and cardiologist.

Truth is, I think we live in a toxic world. I was in the medical profession ( EMT, MA ) for years. I would watch Drs prescribe drug after drug, to people. Sometimes with dire consequences. I think the more natural we can go, the less toxic our bodies will become. Just how many different kinds of meds can we keep putting in our bodies....all with their own side effects....until our bodies just can't handle it anymore. I for one am glad you shared this! I look forward to reading it.

I have no idea. Was fine one day, and in ER the next. I was, dealing with a very crazy work schedule, and a lot of other stresses at the time though. Going to Mayo- Az the end of March, and hoping for more answers then.

I think you will find most of us whether POTS, MSA, or any dysautonomia have gastro problems. As you find your way around this forum, you will get sooooo much help answering your question. There are so many people here who have done incredible research. It has helped me to know what to ask my Drs. So good luck. Keep reading and be proactive for yourself and your health!

Have you been to Neuro Dr yet? Any testing?

Ash, please let us know what you are getting. I am in the same boat as you-----no pun intended-----but I feel like my eyeballs may even begin to float! And smartwater is so expensive.

Songcanary, Thank you for the good thoughts. I really appreciate it.

So nice to hear the other side of the story. Thank you for taking the time to post it. Having a support system is so important, whether family, friends, or this forum. We end each other, as your post so beautifully expressed. Hope the marathon goes great!

Have you elevated the head of your bed? This really helped me. My BP gets so low at night, that I think my brain gets in panic mode to make me wake up. And yes im all sweaty, and more fatigued. I hate pillows, so putting blocks under head of bed was how we accomplished it. Not a cure mind you, but it helped.

If you notice my user name for this forum, it's because of my special dog. She was a gift from my husband a few years before I got sick. I loved her dearly, but it was not until I became I'll that I realized just how special she was. When I first started having episodes of syncope( a year before POTS diagnosed) she could somehow sense when they were going to happen. She would whine and push at my feet, when I would start to regain conscienceness, she would always be there licking away my tears. Sticking close for hours, to make sure i was ok. To this day, she is my closest daily companion.

Sadly she is 12 yrs old now, and having her own health problems. Vet says its time to let her go. I just don't know how.( but I know I have too) I will miss her so!!!

Kris, So sorry you are going through this today. Please know you are not alone. I would bet most of us who have been dealing with this illness for sometime, have been through something similar. This illness is so isolating. No one can truly understand what it's like. Not only for ourselves, but also our spouse. My husband has told me that for him, it's scary. He wants to fix the unfixable. Every time I want to try something new, or try another Dr, he gets frustrated because he's afraid of the let down. Not only to me, but for him also. I guess we have to try to see things for one another's perspective.

I wish the very best for you both. Hang in there.