gertie

Hi Angela, I had a family member call me the other day & ask how I was. I usually say fine but that day I had passed out & near out so I said, "I'm beginning to feel a little better after passing out in the BR". They said in a mocking tone I didn't like, "well I'll let you get back to your passing out". I told them I thought that was a very hurtful thing to say. Instead of asking if I needed help or they hoped I'd be better soon that is usually what I get from my family. That is why I've become a loner I don't have to always pretend I'm ok. I'm sorry there are such jerks out there but don't let them get you down.

Did/do any of you have urinary frequency as a symptom? That was the first symptom I remember which started as a young adult & probably when I was a child. I'm just curious because I don't think I've heard anyone else mention this. Thanks.

Thanks for your replies. Of all the Dysautonomia symptoms I have this is the worst because of being helpless to stop it. It's so embarrassing. Everytime I need to have a BM I start thinking about how sick I could get from it. I'm always fearful of leaving home. What if I get sick on the road & no bathroom & even if I could get to a BR I would end up on the floor. It's too horrible to think about.

When I have any pain in the abdomen area usually during a BM, I pass out. I've been doing this for many years. I may go for a month with no problem then a stomach cramp & I'm out like a light. Sweat, nausea etc. Now that I'm a senior I'm told it is more serious because of heart failure or breaking a bone if I fall off the pot. My neuro is so nonchalant about it. She always says if you fall just get up & drink something, don't worry about it. You can see what I have to work with. If this happens to you have you found a way to prevent this from happening? Thanks.

Thanks everyone! Carinara, do you know what brand you have?

I am unable to walk enough for it to be classified as exercise. I have bad knees & feet & would like to try something for exercise on the days I feel like it. I notice with the portable exercycle you can sit in your chair to pedal or put it on a table to work the arms & it is not expensive. Have any of you had any experience with these? I don't want to buy more junk to have to get rid of. Thanks.

I have Hashimotos, adrenal problems, fibromyalgia, arthritis, too many things to name. Add migraines & meniere's, allergies & sometimes it gets to be more than I think I can handle.

I'm sorry you're having a bad time. I hope you will be better soon. Please try not to get too stressed & thanks for all you do for us.

I have vasovagal syncope but it's usually brought on if I have pain during the BM.

Is there any 1 antibiotic that is less likely to cause an allergic reaction? Over the years I've tried everything from A-Z & have experienced everything from rash, itching, fainting, throat closing etc. I looked through the things that help list & didn't see a reference to antibiotics. Any help appreciated.

Thanks everyone. I don't worry about it making me drowsy, quite the contrary. It keeps me up all night, urinary frequency, etc. At least with the 12 hr Allegra if I took it early in the a.m. it wore off by bedtime.

I will never get one again. A few years ago when I started getting sick my dr insisted I get a flue shot. He said the flu would be more dangerous for me than the vaccine. No so, I had a severe reaction to it & I could not get out of bed for approx 2 weeks. I don't believe I ever fully recovered.

I have taken 12 hour Allegra 60 in the past w/o too many side effect. The dr switched me to 24 hr time release, which I didn't know until I had the pres. filled. I'm a little worried about changing. It took me a long time to find reg Allegra. I have heart arrythmias with it so I can't imagine what kind of problems I will have with time release. Anyone tried it? Any comments appreciated.

Does anyone know an online site to purchase B-1 cream? I don't want the B-12 & B-1 combo just B-1? Does anyone know if a liquid is available? I haven't been able to find any on a Google search. Maybe I overlooked it. Thanks.

I was diagnosed with ES several years ago. The things that effect me the most are electric motors, fans, leaf blowers, ironing, riding in a car, phones, cell being the worst. The larger the TV the more it bothers me. Sitting in front of computer I get a tingling electrical shock feeling up one side of neck & head. A wireless mouse will cause my hand to feel hot & tingley. I can't begin to tell you how sick I get if I use a cell phone for any length of time. Speaker phones are the best. The symptoms are very hard for me to describe. I had never heard of it when I was diagnosed. I know people that live secluded lives w/o electricity to get relief. I used a Trifield Meter for a long time to measure EMF's so I would know what things would effect me the most & to avoid them. What are your symptoms? I have a book on ES & will get you the name of it if you want?

I get motion sickness but I have Meniere's & migraines. I can't eat a lot of salt because it causes fluid in inner ear which makes motion sickness worse. Ativan or Valium helps stabilize the vestibular system. Some people say ginger also helps. Good luck!

Most days (thank God) I am still able to get up & do some chores. I find that takes all my time with no energy left for hobbies. I can't help but wonder who does your cooking, cleaning, & shopping. Are you fortunate enough to be able to hire help? I am retired, on a fixed income. If I'm not well enough to do, it doesn't get done & there's so much that needs doing. Best wishes to all. Thanks.

Mine on each side of my neck are usually swollen. They fluctuate from about the size of an egg to a little smaller. One side looks almost like I have the mumps.

Thanks everyone. There is never a dull moment for us with POTS or Dys.

Everytime I feel better for a couple of days I get very optimistic that things are changing & I will be well. Then when I relapse again I'm very angry & disappointed in myself. I've been doing this for 25 years & should know by now I'm never going to be "normal" but I keep dreaming. It's an emotional rollercoaster.

The last few weeks when I do my sinus rinse & gently blow my nose I get so dizzy I feel like I am going to pass out for a moment. I do have ragweed allergy & also have Meniere's but have never experienced this b/4. Would this symptom be more likely from Meniere's or dys? It seems everyday there is another strange symptom addded to my already overwhelming list. Thanks.

Thank you Rachel. I've given up hope of finding any type ERT that I can use.

Have any of you ladies had experience with these? I have tried estrogen, estriol & progesterone but could not use them. After a couple days of using the cream I started having seizures again. Scared me to death. I was thinking of trying testosterone for migraines but after the seizure incident the neuro said not to take them. Thanks.

I have migraines with aura, w/o aura & optical migraines. The pain is usually one sided but I have had them on both sides at the same time & they are unbearable. I just found a book "Migraine" by Oliver Sachs. It's an old book but I wish I had it 25 yrs ago. It has answered a lot of questions for me my neuro's have not been able to answer concerning migraines. I've been on Neurontin for years which does not completely control my migraines but it takes the edge off where I can function. My neuro says it's an outdated drug but I'm afraid to change since I don't do well with drugs.

I sweat off & on 24/7. The only way I get any rest at night is to sleep under a ceiling fan. With the fan on I, & the bed, stay dry. If my feet get cool I cover with a sheet. It's like some sort of weird marathon with me at night. I turn on the fan, then I get cool, then I turn off the fan, then I'm sweating etc. Between that & getting up to go to the bathroom I feel like I've been working out all night. No wonder I stay so tired.