ariella Posted September 6, 2005 Report Share Posted September 6, 2005 Hi everyone. Welcome to all the new people.Strangest thing happened on the way to the neuro today...I was on an intercity bus, it was a few minutes after we had descended from a highish elevation to a lower area, and I suddenly got this incredible pressure pain in my head, both in the back on the bottem, and maybe a little in the forehead area, I think it also radiated down the neck. (long day, so the details are a little fuzzy, sorry) Not too comfy around the ears either. But it was very painful, a pressure kind of pain. Lasted for a few minutes and then went away. Funny thing is that I was thinking to myself a little before, as we passed the airport, if I will be able to fly again. I guess I got my answer? Should I assume it was from the change in altitude? Weird is that it happened when we were already in a flat area for a few minutes.Hugs,Ariellaps-no, I didn't mention it to the doctor, I was on the way to get testing done for my neutromuscular condition (which the mestinon is Thank God helping tremendously. Up to 60mg 5x a day.) Quote Link to comment Share on other sites More sharing options...
steph37822 Posted September 6, 2005 Report Share Posted September 6, 2005 oops Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted September 6, 2005 Report Share Posted September 6, 2005 Hope you are feeling better now!From your description of your trip it really does not sound likely that altitude played a role--it was probably coincidence. What was the highest altitude you were at on the bus? Airplanes are pressurized at 8,000 feet, btw, so this may or may not indicate your tolerance for air travel. I think POTS patients are also affected by the dryness of the air during air travel and the pressure changes.I get headaches out of the blue that come on and go away just as mysteriously.I agree with Steph--my experience with altitude is a dull headache and slight nausea that only goes away with time or with going to a lower elevation. It is often relieved with fluids. But this is at elevations exceeding 10,000 feet (for me).take care, katherine Quote Link to comment Share on other sites More sharing options...
Ernie Posted September 6, 2005 Report Share Posted September 6, 2005 Hi Ariella,Sometimes just before fainting I have this intense headache, as if my head will explode because of the pressure inside. When I wake up I have a migraine headache that last for about 24 hours. Quote Link to comment Share on other sites More sharing options...
ariella Posted September 8, 2005 Author Report Share Posted September 8, 2005 thanks guysIt probably was blood pressure related. I was off the mestinon that morning because of the testing. I probably just got exhausted from the trip, and that sent my blood pressure kaploo-ee.The breathing seems to be not all POTS related. The test they did was pulmonary function combined with neostygmine, to check for myasthenia gravis. The test was positive. And now to do something about it...well, my neuro is on vacation for a month. For now I'm addicted to mestinon.Ariella Quote Link to comment Share on other sites More sharing options...
Laura Posted September 8, 2005 Report Share Posted September 8, 2005 Ariella, I am so glad that you are getting some answers and treatment that is helping! Do you have any further testing for the myasthenia coming up or is this the definitive test? I am so thankful that they caught this... Take care. Laura Quote Link to comment Share on other sites More sharing options...
ariella Posted September 8, 2005 Author Report Share Posted September 8, 2005 Laura,I still have one blood test to go. I did a somewhat positive emg in the side of my face-no joke-(it was positive enough to show something's going on, not positive enough to give the diagnosis on the spot). The big relief today is that my cat scan was normal, some people with myasthenia gravis develop tumors on the thymus gland. The doctor is treating as if it is myasthenia gravis. Some patients have no "objective findings" but still have the disease. I at least have some objective findings, and good response to treatment. I am able to walk normally for the first tiime in 3 years! (I still use my cane because it preserves the muscle strength. The mestinon is not a cure, and won't save me if I overdo) Now if only they can do a little more for the breathing...I consider myself lucky that I can "kill two birds with one stone" (Corina?here's an idiom) and take mestinon for both the POTS and the myasthenia.I'm also much less fatigued, and am able to differentiate now when the POTS is getting at me and when it's the myasthenia. Hoping to go play some guitar in the studio next week, I'm in the middle of a project that got pushed off more times than I could count. Thanks all of you for caring, it makes such a big difference.Love, Ariella Quote Link to comment Share on other sites More sharing options...
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