Hope

I had an apnea monitor years ago because I often wake up with a gasp like I haven't been breathing. I was told that it didn't happen often enough in one night to be true apnea. Either way I just figure it has to do with dysautonomia. Same with shortness of breath-"Possible Asthma". I can rarely seem to get a solid diagnosis of my ailments.

Yes. I just had to leave church today about 3/4 through the service. I tried to stick it out as long as I could. At first I thought it was just from the walk in to the church. But then I started to realize every time the music and singing started I would get worse, and when it stopped I would feel somewhat better. After awhile it was just too much. My face was twitching in 3 places, my left arm was tingling and starting to feel weird and I was getting that "other worldly" feeling and thought I should get to some fresh air and quiet so I went to the car, staggering, which was embarrassing, but at least I didn't pass out in front of everyone! Stores bother me too, it doesn't take long. When I can get to them, I can't stay long before getting symptomatic. I don't even have to walk through the store. Many times I have had my sons get what I need through the store while I stay up front by the register waiting to pay and get symptomatic just standing there. It must be the lights. I can't figure it out. It can't be a store anxiety, I want to go to the store and get what I want! And I LOVE going to church. It's very bothersome! I've had problems at church for years, but not as bad as it is now. Sensory Overload makes it all make more sense.

So glad you can get it fixed!

No viruses, immunizations, mono?

I'm with you, I don't believe they know if this will kill people or not. If we do die, they can always blame something else, or put "undetermined" or "natural causes" on our death certificate. It sounds morbid, but I have thought about this a lot. Like, just put "It was all in her head" on my grave stone! My dad died of colon cancer, at home with hospice, and for some reason they put diabetic renal failure on his death certificate. He had very mild diabetes, not on any meds. I've lost trust in our health system and most doctors. I appreciate the ones I have now that aren't working against me. They are doing their best to help me, I believe, but there's just not enough research for our type of illness and it seems the research that is out there for post-viral illness is ignored by the medical community. It's only the doctors on the fringe that don't take insurance or very limited types of insurance that seems to recognize what might be going on and the insurance companies won't back them. I just know that I am gonna live until I die, whether I die from this illness or hit by a truck, it will be my time to go. Not a very uplifting reply, sorry! I commiserate with you totally!

I was on a jury a few years back where a man had been committed for his allotted amount of time, and the state had him in court to try to recommit him. It was very clear to me that he was being treated unfairly by the system and in the mental hospital according to all the info we were given. At the end of the day, all my fellow jurors agreed and he was set free. The abuse of power over people even in America can be truly disgusting.

Boy I miss my bike! It's one of my favorite things! I can't wait to ride it again!

I wouldn't say my triggers have changed, but multiply as time goes on. I have never felt real well in the heat, but it's different now. I can't tolerate the heat. I feel better when it's cool outside and in the house. Although if it's too cold, I have trouble keeping blood flow to my hands and feet. I've been trying to desensitize myself to heat, allergies, foods, etc by exposing myself in small increments. I think it's helped a little with heat and food, but not allergies. I don't know how the POTSies in the Southern States live through the intense heat!

The lymph nodes swelling would make me think maybe there is more than one thing going on, or it's not internal hemorrhoids and there is something else going on.

Thanks guys. Bebe, I think I get it now "PTL" =Praise the Lord! LooneyMom, I might not even make it on Friday, I might try next week. I always feel worse after I try to do something than when I'm trying to do it. Since I got back from the walk I am very off balance, dizzy, brain-fogged, fatigued, and short of breath. But that's Ok! It's worth it to get out an move around. I think I might try a shorter distance more often and work up to another lap around, etc.

Forgive me Bebe, What's PTL? And thanks for the encouragement!

Yay: It must help somebody because it seems that you hear about it a lot. The gal who did my tilt table test said her mother-in-law has POTS and they gave her Zoloft, and she just seemed to get better! Nay:It made me a little paranoid and my husband a lot paranoid. It also made me kind of retreat into myself. I didn't feel the need to talk to anybody unless they talked to me. My Aunt didn't tolerate it either, but she didn't say why. Hope it works for you!

I just walked all the way around the block!!!!!!!!!!! First time in 2 years!!!!!!!! I just had to share. Yes my blood pressure is 84/66 and I feel like I ran a mile but that's OK, I popped a midodrine and now I'm gonna sit and crochet. My heart rate is only 105, that's awesome! My Hope has returned! All Glory and Praise to my God! Hope

Thank you!

Dizzysillyak, When you say your lesions are resolved is that on an MRI? They're just gone? Was that from the Wahls diet, or eliminating the gluten, corn, etc...? Are these the same kind of lesions they find in MS? I have a family member with lesions that was diagnosed as MS, but the spinal tap did not reveal MS and this person will not take any meds (and I don't blame them), but natural remedies are welcome. I would like to pass this info on to him. Thanks, Hope

Thanks for posting this!

Just the little bit that you can read there looks like ADD. Interesting since ADD is so very common in my family. I don't think anybody ever addressed what might be causing it. Now that I know more about dysautonomia, I can see where many family members could have different levels of it. Just an observation.

Thanks for posting, I will read up on this.

Good article. Thanks!

I have to nap to get through the day.

There are not many days I go without Midodrine. Definitely in small doses because I am so sensitive to everything, but I've gotten so used to it that I wouldn't want to be without it. I wouldn't try to self medicate though. I eat salty potato chips to help raise my blood pressure. I was told when I was pregnant not to eat black licorice because it raises blood pressure. I would eat that if I could find some without gluten.

"In the FWIW category... as stated above, there are LOTS of biomarkers for CFS as a disease as well and it is no longer in the "it's all in their heads" category. It's extremely unfortunate that uneducated medical providers are unaware of that fact and continue to propagate the idea that it's a psych diagnosis. The name of the disease itself is extremely derogatory and in no way accounts for the extensive damage done to the nervous, endocrine, immune and GI systems done by the disease. A recent study by Vanderbilt concluded that when they compared POTS patients with their POTS/CFS patients... they all met CFS criteria (except 1)....so in fact... this may all be part of one continuum- at least in it's more severe forms. (If you haven't done any research into the disease you may want to. You may be surprised/shocked by what you find out.) " Thank you Chaos! I'm a potsy/CFSer and there's nothing I hate to hear more than it's anxiety! I'm so thankful to have a good team of docs that seem to know the difference!

Thanks all! I'm pretty sure it was a virus that brought this one on. I'm doing much better today. A little weaker than my normal weakness, but the vertigo is just about gone. I'm still not going to lay down tonight though. One day I think I will buy a recliner instead of trying to prop myself up all the time. Alicia, I do have Meniere's. I used to take antihistamines when I got a flare, but since my POTS has gotten debilitating I can't seem to tolerate them. I just have to ride it out.

Thank you!

Sorry to hear your vertigo is acting up Margiebee! I hope you are feeling better soon. Thanks guys for the pick me up. I am starting to feel a little better already. I can walk around now, and I'm not sick to my stomach anymore. I will definitely NOT attempt to lay down tonight! I hope everybody has a good night!