divine spark

Ethansmom stated that she wears a MedicAlert bracelet. I forgot to mention that I started wearing one at a time when I was still driving. It does provide a degree of security because access to information regarding medical conditions, medications, allergies, family and friends and doctors is available. So if you get into trouble and can't talk, the staff at MedicAlert can do it for you. Just have to keep your file up-to-date.

They also have necklaces if you want something less conspicuous. The bracelet is so light weight that I am usually not aware that I am wearing it.

Nina,

Congratulations on a job well-done!!! It must feel fantastic!

Yes, I am alone, all day and all of the time.

I have a neighbor who says she or her son would be available to take me to a hospital if necessary; however, they are away a lot and I'm not sure they understand how bad things can get.

Have gone to the ER by cab three times since I've been sick.

It isn't easy.

Pamyla,

The faster acting form of Enada is called ENADAlert. You take them one hour before studying. Eight tablets are between $10.49 and $12.99.

Would you let us know how it works for you?

Patti

There's also a faster-acting form of Enada called Enada Alert. I bought some but can't tell you how effective it is.

Unfortunately it seems you have to remember to take the stuff.

Yep! Sure do. Doesn't happen in the middle of the night but as soon as I am ready to get up. Sometimes I start retching in bed before I even sit up. It has tapered off. I drink chamomile, ginger or peppermint tea to settle it down.

Nice heart!

You go girl! Thankyou for sharing such positive news.

What kind of food testing did you have done?

One of the side effects of Effexor is increased blood pressure .

I have felt "bad" for many years when standing. On a GOOD day I can tolerate five to ten minutes standing at the kitchen sink and that's because I am able to lean against the counter. It's actually less uncomfortable for me to walk than stand unless I am very weak or my gait is especially impaired.

I can sit for several hours at a time as long as my legs are horizontal and I have support for my head.

My solution is to sit down if standing or to lie down propped up on pillows if sitting.

I have never come up with an adequate description of how it feels.

I also find after I eat that my heartrate will shoot up and I almost always can feel my heart beating even if it is beating at a normal pace.

Do you suppose this could be in any way connected to or aggravated by food intolerances? This happens to me, too, but not every time.

Hi Earth Mother,

I went off Mestinon but I did it very gradually under the supervision of the neurologist.

I think the Mestinon helped a little at the beginning but the results were not dramatic.

Thank you for your welcome. I'm so very troubled about my situation and realize now that I have had POTS symptoms for many years. I am so glad to have found this and another discussion board but am so "shocked and dismayed" (and sick)that I don't even know where to start with questions.

Hi,

I am new here and just wanted to tell you that if you should go on Mestinon to be very careful. I took the stuff for several months, was never sure how effective it was and then ended up in the ER with shortness of breath, increased muscle weakness and an impaired gait which included taking very short steps.

It took two neurologists and lots of tests to figure out what was causing the problem.

My muscle strength had improved for a while at first. I don't have myasthenia gravis but CFS. The POTS diagnosis is new and I'm still bewildered.

The correct dosage of Mestinon is the tricky part, even for people with myasthenia gravis.