joyrose

Dear Let it Bleed, Because dysautonomia is the bucket of symptoms and not telling of the exact problem, it could be a number of things causing this. It's always a detective job to figure it out and/or a Herculean job to live with it. Whatever is causing it, I know it is so frustrating to have my perceived temp to be off. If it is interfering with your sleep, make sure your doc knows because the more sleep you lose, the weirder your symptoms can get. -Deb

That is scary. Really scary. By any chance did you have neighborhood mosquito spraying right before this happened? Whenever we have it in the summertime, my speech becomes halting for about 4 days. It takes so long for me to get a sentence out and since I can never find the right word I just make up my own. The spray is a nerve poison and considered "safe" for the general public. You can call your city or county to see if they do spray by your house so at the very least, you can shut your windows. Otherwise, you may need to take more drastic steps. Whatever is going on needs to be investigated by a doctor. You've done the right thing to pursue answers. -Deb

Ariella, My neurologist has put me on Mestinon during major flareups. He wants to keep it as ammo for these rough times. I was put on 90 mg. 3/day this past spring when my blood pressure was stuck below 60/40--40/? for 9 days. My pressure has been more stable since then with a much smaller daily dose. Whenever I can, I decrease the dose, but not go off it, so that my body will be particularly receptive to a large dose when I'm "under fire!"-Deb

Thunk a Dunk. Just a second. There now, I rolled off my left side. -Deb

Dear Radha, Don't you wish you could adjust your brain, body and emotions to be in perfect harmony? Until then... nights can be long. If you keep a journal or handwrite letters you can have that satisfaction, brain work, and quiet time all at once. Get those thoughts on paper. (Make sure your bedside light is easy to turn off and on) I keep notebooks by the bed to write my ideas in. I have a CD player that plays my most inspiring and comforting music. I have a few of my favorite Bible verses that I can meditate on, so I can try to distract my mind from daytime activities. The doctor may be hesitant to give you xanax or another drug when your blood pressure is low because it could go lower. The meds could cloud your judgment. If you take a sleep med, take it in bed and stay there. Some people take it and say they will go to bed when they get drowsy. The night goes by as the drugged person stumbles around missing sleep. With dysautonomia, your body's chemistry can be off normal and make you buzz at bedtime. Your medications, beta blockers (e.g.atenolol) or alpha blockers (e.g.clonidine), although not tranquilizers can also settle things down. I hope that you can get some good rest--and good thinking too--soon! -Deb

That weakness can be absolutely overwhelming. With POTS and dysautonomia one may not move around much and your muscles atrophy. Or, if it's myasthenia, there is the weakness and then the muscle weakens. Either way the blood pressure often drops and You feel like cooked spaghetti Enter Mestinon (pyridostigmine bromide), a drug that's been used for myasthenia to boost the endurance of muscles. It is now being used for dysautonomia too. Now you can just eat spaghetti, not feel like it!

After I had a few bad spells in a row, I absolutely lost my ability to do math in my head. When I told my neurologist, he wasn't surprised and added "acalculalia" to the list to that day's diagnoses. It was back to the flash cards and counting on fingers. Ha-I lost a bit of credibility when I would tell people that I had homeschooled my sons k-12! When you consider the low oxygen levels that our brains succumb to during blood pressure drops, it's a wonder that we can even count, much less calculate. Good for you to keep trying. Our brains were created to recover well, with work. God bless. -Deb

I sounds like you had a horrible day-and it hurts more to think that you'll get a bill too! You did the right thing by going to the ER. Hope Dr. Foaud can help get you onto a stable regimen. -Deb