potsgirl

Yes, the pain meds definitely make me more dizzy and likely to pass out. I have to move very slowly, but when I take them, I also feel like my anxiety is much better. I guess it's the sense of calmness. So far they haven't affected my BP much, but I have put on about 5 pounds. I'm trying the weekend without them... Jana

Congrats on the great news! What a frustration it is when docs drop you...I just had a neurologist refuse to even see me because they already had 'too many stroke patients' and I should go back to my previous neuro who never got back to me or carried through with anything. So....YAY!!

April, I think that there are tons of us out here that feel the same way or have felt the same way in the past. I could've written a very similar email, especially the first 6 months after I knew I was ill and that I finally had to leave my coveted job. I went back to school to get my master's, worked some great anthropological/archaeological jobs, got my dream job in Tucson, and 9 months later had to quit. You have to let yourself go through a grieving process for the life you once had, and when that's over, start looking at how to make your new life the best one possible. Hopefully, you'll recover fully one day. But if not, or while you're waiting, you have to use other channels to get what you need. The Forum has been terrific for me in reaching out to others and making friends. True, they're not usually near enough to meet for coffee, but I've developed some great friends via this Forum who I email and speak with...we support each other every day. I'm in a situation like yours, where my day-to-day functioning is up in the air, and often I can not get out to meet my old friends for coffee or go to a movie. I'm in bed by 7-8 at night! I have my boyfriend, who is very supportive, but it's not like having girlfriends...I try to walk most days of the week, but most of the time I'm home, on the computer, reading books (thank God for books!) or watching shows I've recorded. I know it's frustrating, but on the bright side, it sounds like you can work - which means that once you find a job, and you WILL - that you'll have outside contact and the ability to make friends again. Please feel free to get support/friends from Dinet, and I hope you're feeling better soon. Hugs, Jana

Carinara, Thank you so much for posting about this topic. I know some people on the Forum have had this done, but I think the majority of us are wondering about it and interested perhaps in having this testing done. While I have not had this test, I would love to do it. I'm going to ask my cardio to refer me to an endocrinologist and ask about it. If you do it, please let us know more about it. Sorry I can't be more helpful at this time, but best of luck to you! Cheers, Jana By the way, most of my relatives are back in Germany and Switzerland....

I get nauseated and usually have diarrhea right before and sometimes the first day or two of my period, but nothing to the extent that you have it. I'm sorry that it's been so terribly difficult for you. I'm siding with Broken Shell...you need to visit your gyn and look at trying to stop your period and/or adjust your hormones. For myself, being on the pill has helped with my symptoms quite a bit. Are you on a pill? Perhaps a different combination of estrogen and progesterin would help. I sure hope you get relief soon! Cheers, Jana

Hi Suzy, Yes, the antibiotic use if for my problem with cardiomyopathy and my pacemaker. If I take it with food, sometimes it's not too bad. Just going to the dentist freaks me out because I've had so much work done on my teeth. I never have 'just' a cavity, it's usually a root canal with a crown. This time it's just a crown from a badly decayed large filling, but I shudder just to think of that...I'm a wuss, I admit it. My initial appointment is next Wednesday, they'll prep the tooth and make a mold. I can hardly wait! Hoping you're feeling better! Jana

Suzy, How timely. I just went to the dentist today for some throbbing tooth pain, and we had to go through the pre-medicate or not...I usually do have to pre-medicate, so when I found out I need a crown for one of my molars, I wasn't too excited. Amoxicillin usually makes me pretty sick, too. I really am sorry about all the problems and pain you're going through right now. Hope you're feeling better soon! Hugs, Jana

Suzy, Thanks for the kind words, and I'm so sorry that you're having so many difficulties right now. I'm thinking of you often..get better soon, my friend. Hugs back, Jana

Yes, sometimes I take a Benadryl, also. Thanks for responding!

The only answer I can think of as to why you notice it only when you're dozing is that during sleep, you wouldn't be as likely to notice strange things going on...I was supposed to have my sleep study about two weeks ago, but then my boyfriend was diagnosed with prostate cancer, so I've had to push it back until the end of July after he has had surgery and recuperated. I'll sure let you know, though. And I may try to sneak it in before his surgery, which is July 17th.

Hola Everyone~ I've started taking Percocet for some chronic pain, and lately the pain has been worse so I've been taking 10 mgs with 650 acetominophen once daily. Anyone else? Did this affect your symptoms one way or another? Thanks! jana

I'm aware of a couple people here that do this, and they seem to think it helps. My doctor doesn't believe in it, but I'd like to give it a try. Let us know what you find out if you try it!

Hi Jen, Just my opinion, but I've had things like that, and my PCP has finally talked my into a sleep apnea study. I know there are several of us here that suffer from it. But I think you need to talk to your PCP about, one way or another. How scary~ Hope you figure it out soon! Cheers, Jana

My doc at Mayo recommended 5-7 GRAMS of salt a day. That's a helluva lot of salt! I know I've said it before, but Rold Gold pretzels have tons of salt, as does bouillon (yuck) and other soups. You can also buy buffered salt tabs that won't bother your stomach, but you'd have to take a ton of them to meet your needs. So, I do a combination of food and salt tabs, and I still only get about 3 grams a day. And keep up with the water! Cheers, Jana

Yes, I definitely have problems with IBS and major constipation. I take Senna to help with the constipation, 2 every morning and night. I have alot of bloating, too. I'm having a colonoscopy done in about 10 days to see what's going on. I will probably start on one of the IBS meds if needed. Take care, Jana

I have the same thing happen. Almost every day when I lay down for a nap or every night at bedtime, I get an increased number of palps/skipped beats. My cardio caught it last time I was in, and this time, I may go on a Holter monitor to see what's going on. I do have a history of heart problems though, including cardiomyopathy. Do you? A Holter would help catch those errant beats. Jana

Shoe, Good luck to you as you sort this mess out. Just remember, while it may be a mess and difficult in the beginning, it will get better. We're thinking of you and wishing you the best. Cheers, Jana

I used to be very active also, and my cardio/neuro pushes me to do as much exercise as possible, even if it's going to work - a lot of us can't even handle that! I've been off work for 2 years now. I do, however, walk 4 times a week, if things are going well. I think it makes my overall health better, and it establishes a routine. In fact, I think that may be part of your problem, too. During the week you're moving more, and have a schedule. How about trying to get on more of a schedule that involves some movement during your weekends, too? It's like sleeping...They say you should keep approximately the same bedtime during the week and during the weekend. It's worth a try! All my best, let us know how you're doing. jana

Congrats, Maxine. It's also a welcome pleasure to get some good news. Cheers, jana

I think almost all of us gets this at one time or another, especially when dysautonomia is new to us. And, sometimes it happen that our paranoia's happen to be true. I have had some unusual problems that are associated with the symptoms, so if they last long enough, I will usually check them out, instead of dismissing them as 'paranoia' - with common sense, of course. Hope you have a good Monday, Jana

YOU WIN! You poor, poor woman. I think the longest of mine was maybe 4-5 weeks, and I thought I'd never make it! What do you take for them? jana

Thanks for the great idea. I'm heading to check out B-12 deficiencies right now. Cheers, jana

Yes, I get headaches/migraines in the same spot. Mine are located at the base of my brain, my cerebellum, and into my upper spinal area. That area is also painful to the touch. When I get these headaches, only prescription pain killers will help, and they can last for weeks. Hope yours aren't as long-lasting! jana

There is a good cardio doc in Tucson that works with POTS patients. His name is Dr. Ewy (Dr. A-Vee) and he's at the Sarver Heart Center at University Medical Center. His PRN, Connie Doner, also does a lot of work with POTS. They are good and caring...He's the director of the heart center. If anyone needs more info, please PM me. Cheers, Jana

Jan, Wow! I looked up Lhermette's, and it really sounds like what I have. Where did you find out about this? I can hardly find anything on the Internet about it. Thanks a lot! Jana