potsgirl

Good to see you back. I take Clonazepam (Klonopin) once a day and it seems to help with some of my dysautonomia symptoms. I think it's worth trying it out. I only take 1/2 of a .25 tab, but I take it with a small amount of Paxil and Trazodone. Somehow the combination works for me. Hope you find one that helps you, too.

Cheers,

Jana

I know this must sound odd, but sometimes I wish I could throw up. You know, when you're really dizzy and nauseous and it takes everything you have just to sit really still? Once in a while I'll go and try to make myself vomit, because I know it would probably make me feel better, but I usually can't. I have a very strong stomach, I guess.

I've had tingling and some numbness in my left hand for about the last 5 or 6 weeks now. I'm not sure if I pinched a nerve, or if it's just another one of dysautonomia's little 'gifts' to me. This doesn't come and go, it's always there. Anyone else?

Daisy,

Well said. After reading Elfie's second post, I agree completely.

Welcome to the Forum,

Dealing with the medical establishment, you'll find out from the posts here, is a difficult situation for many of us. I would love to be in a controlled environment while I got off some of my meds - I hope that comes through for your wife. My boyfriend, who has been terrifically supportive over these last 3 years, will be posting soon, and he's eager to 'talk with' others who have a loved one who has this disease. Especially other guys. So hang in there, there are mothers and husbands and others who are on the Forum with loved ones suffering from dysautonomia. You're not alone, and in good company!

Cheers,

Jana

Wow - I love the square Carinara did! Thanks again for all of your hard work, Maggie.

There are a couple of hotels that are directly linked to the main clinic that have kitchenettes (The Mariott was one, don't remember the other), and we went to the grocery store and bought most of our food. You have a full size fridge, an oven, microwave, dishwasher, it was great. We could eat when and how we felt like it. The cafeteria in the clinic is ok, and the food is reasonable. We ate there a few times, too. Saved a lot of money, also, since we were there 11 days.

Good luck!

Jana

I lived in Iowa for many years, dealing with the heat and humidity, which made me very ill. I took a job in Arizona, and it's just as bad during the summer when the temps are well over 100 for big chunks of time. How do I survive? Just like the winters in Iowa (with heat), during the summers here, I just go from A/C to A/C, and try to stay in during the hottest parts of the day....From noon to 6!

Cheers,

Jana

Elfie,

It doesn't sound like you signed this new lease, did you? If not, you are not responsible for living there or paying for anything. What happened to your old apartment? Can you get back there?

As I read your entry, I got more and more concerned. Red flags everywhere - it certainly sounds to me like you are in an abusive relationship. Your boyfriend sounds extremely controlling and that he limits your access to other people to a great extent. He's trying to force you into things that harm your health - I don't see love in that. Love means wanting the best for our partners, emotionally, physically, and mentally. Your boyfriend does not seem to meet any of these criteria. These are not small issues. They are extremely important to your health and well-being. My blunt opinion is that I would get myself out of that situation as fast as possible. Go home and recoup, whatever you need to give yourself some distance from this guy and be able to think independently. See a counselor. Would he go with you to one? I'm guessing not.

I'm very concerned for you, and please get some help for your well-being. You've come to the right place for caring, supportive people.

Take care of yourself!

Jana

I've never had different generics in one prescription before, but my birth control pill, Apri, all of a sudden started changing to other generic brands over a couple of months. I'm now on the third generic since Apri, and they're all subtly different. They didn't even mention if when I picked them up - I notice when I get home, and then I have to call the pharmacy to make sure there hasn't been a mistake. I'm assuming that your pharmacy ran out of your familiar generic before they could finish your order, and put the others in instead. Perhaps the pharmacy could exchange the 'duds' for the right ones?

Best of luck,

Jana

Brye,

It is amazing that you got your SSDI on the first try. Good for you! I applied for it right after I had to take a leave of absence from work for medical reasons - just in case I didn't get better and come back to work. It's a good thing I filed right away, because I got SSDI in court, after being denied twice before. It took me almost exactly 2 years to get. I also had a lawyer once I got my second denial, and she was great. Good luck to all of you applying for SSDI or long-term disability! It's worth the time and effort.

Cheers,

Jana

Hi Serena,

I was taking a BB a couple of years ago for a heart problem, but had to stop taking them due to the nasty headaches they gave me. Since a lot of us here are very sensitive to meds, it's not unusual that we may have a side effect that isn't "common" or written about on some of the health/drug sites. They also usually don't list all of the side effects, either. You may want to let your son's doctor know, and maybe a smaller dose or a different BB might help.

Cheers,

Jana

Hello All~

Serena - That was an excellent explanation - thank you for writing. I'm in the high 60s and low to mid 70s quite a bit in the mornings when I'm standing, and of course I'm a fainter, too. I'm always surprised to see a BP of 100 or more from laying down, which isn't too often. Sorry your son is suffering from some of the same symptoms.

Thanks also to everyone else for their input and suggestions. They're all valuable to me. Arizona Girl, how long did it take you to get in to Dr. Levin?

Skyblu, Brye, KarenSch (I can't believe 'PAF' didn't register - brain fog! Now I wonder if I have that?), bjt22, persephone, and if I missed anyone else, THANKS!

This site is so great. Cheers,

Jana

I'm sorry - What is PAF? I wish I could take Midodrine or Florinef but I'm highly sensitive to both meds. Very frustrating. Can you exercise?

I so looked forward to getting an hour-long massage, which was a gift from my son for Mother's Day, and at least in my case, it made me really sick. The room was warm, the massage bed was warm, but it felt pretty good during the process. About 10 minutes later I was shaky and nauseous, felt like passing out, and had a nasty headache. I wouldn't do it again.

I do have a friend who uses acupuncture (she also has dysautonomia), and she thinks it's helped her. She goes regularly though, once a week.

Hope this helps,

Jana

Good morning everyone~

I had some very odd BP readings this morning, and was wondering if others have experienced something like this...

Supine: 83/61 and pulse 65 (felt like it was going to be high - usually runs about 95-100/70)

Standing, 30 seconds: 65/58 - machine erred; 1 minute: 83/65 and 126; 3 min: 74/62 and 118 (I'm usually in the high 60s to low 70s when I stand)

I would have taken a five minute reading, but I couldn't stand any longer. These numbers are definitely odd for me, although I do have OI/POTS. Anyone?

Thanks!

Jana

Hi Erika,

Boy, this seems to be the season for relationship troubles. I'm sorry everything is hitting you at once. I certainly can relate to how you feel, and I'm guessing there are many others on here that can also relate. You are stronger than you think you are, and if you just keep putting one foot in front of the other, you will get through this, and things will work out for the best - whatever that might be. I'm wishing you the best, and peace and positive energy. We're all here supporting you!

Jana

I'm the same as Ramakentesh, you can see my pulse and feel it at basically any point on my body. I'm a little thin, though, and I suppose that might have something to do with it.

This is a great article. Thanks so much for posting it!

Jana

Hi Daisy,

I guess I'm going to go against popular opinion a little and say that from what you've written, with my background in psychology, that your daughter certainly sounds like she has an anxiety issue she needs to get help for, but she also needs to get a tilt table to rule out dysautonomia. I started suffering from generalized anxiety disorder about 10 years ago, well before I got sick with POTS/OI. I definitely think there's a link between the two illnesses, but that anxiety can't always be put into the box with dysautonomia, especially when she's so caught up in your illness and is mimicking your behaviors. It can be a manifestation in and of itself.

I wish only the best for you and your daughter, and either way, she sounds like she should get treatment soon to start treating her symptoms. You'll be a great help to her, especially if she does turn out to have dysautonomia, by teaching her that life can be manageable with this disease. Please keep us informed on how she's doing. You two are obviously going through a very difficult time right now.

My best,

Jana

Hmmm....No, I don't think I have any 'suspicious' odors. Nothing anyone is willing to tell me, at least!

Cheers,

jana

Hi Dale,

What medications are you taking? Sounds like you may need to update your doctor on what's going on and look at your medication use. Please let us know how you're doing.

Cheers,

Jana

Exactly! Actually, I'm a 2-errand woman. I can usually do 2 quick errands, or about an hour or so out mid to late morning. He knows that if I'm going along to the grocery store with him that it has to be a 'run in and get what we need, then back out and home' trip. If he feels like meandering around and looking things over, he knows to go by himself and he's ok with that, too. I simply can't do it otherwise. Today I'm hoping to go on a walk with him, then to the grocery store. Sure wish I could go to the mall and help him look for some new clothes after lunch, but that rarely happens. I guess it's good to know our limits.

Cheers,

Jana

Sometimes I'll feel this way if I get woken up or wake up without enough sleep. Really sick, feeling like I can barely move, and very nauseous. Is it possible for your partner to not turn on the light and take a shower in the same bedroom/bathroom that you're in? Just my personal opinion, but it sounds rather rude. When my partner gets up early, he goes into the guest room bathroom, where he's put out his clothes for the day, and showers and gets ready in there. I guess I'm lucky!

Take care, and the Meclizine/Dramamine is a great idea.

Cheers,

Jana

Kari,

I had an appointment made with Dr. Scott, one of the ANS specialists, and when I got my letter from Mayo, it showed my appointment with him and a couple of tests he wanted me to do before seeing him. I saw him twice, and a cardiologist once, and then the tests. My letter didn't mention a time frame, but my mother used to go there, so I knew what to expect regarding length of stay. There really is no way to know for sure until you start taking tests and seeing doctors. You'll be in a great place, though.

Let us know how things go. If you have more questions, you can PM me.

Cheers,

Jana