potsgirl

Hi Rene,

I'm so sorry that I don't have any answers for you - just support. You seem to not be able to catch a break, and I wish for you a couple of wonderful and peaceful days. I also wish I could have been there with you, holding your hand and being an advocate for you for those docs that just forge ahead without giving much thought to what drugs they're giving you.

Rest well, my friend. I'm thinking of you.

Jana

Erika,

I can relate to what you're going through. I hardly ever make it to the movies, and I used to love going. Now it's the noise, the crowd, my headaches and just being too sick to go. What REALLY bothers me is when I try to make plans with someone and I have to keep canceling since I never know if I'll feel up to going out that day or not. Usually not. I get so frustrated with myself, and humiliated. So, here's a huge dose of support and a big hug. Know that you're never along.

Jana

Suzy,

I just saw your post, and I'm so sorry that you're feeling ill again. It's a sick and twisted little game that POTS plays with us. I get so happy when I even have one good day, and then it all comes back. It sure makes me appreciate the good days, though. Rest up, and don't feel like you have to 'entertain' people. That's one of my biggest problems when I'm feeling really sick, I just don't want to talk, but everyone else wants me to. I hope the cartoon I emailed you will give you a smile.

Hugs and positive thoughts your way!

Jana

Yes! Mine are at the same place...Right at the base of the skull, so I've also wondered about a CSF leak. What is a 'coat hanger' headache?

Thanks,

Jana

Mae,

I had my TTT done both at a highly respected heart center in Tucson and then at the Mayo Clinic with an ANS specialist. Tucson told me I was 'definitely positive' for POTS. My BP runs low and drops to about 45/40 after I'm standing, while my pulse zooms up from around 50 to 125 (I wear a pacemaker for bradycardia, and they disconnected it). Mayo told me I had severe orthostatic hypotension with approximately the same results. I almost fainted both times, because I am a fainter, but both docs told me that fainting didn't mean anything either way. Some people faint, some don't. I hope you get a good specialist to help you find the right treatment.

Hugs,

Jana

I have heart problems and was also on Digoxin, but couldn't tolerate it well. As with all medications, I believe that it's always better to slowly go off a med. I would cut them in half for a week and see how you respond, then 1/4 for a week, then every other day if necessary before completely going off. Most of us with dysautonomia are very drug sensitive, so better safe than sorry.

Jana

I usually wake up with a headache, and then it either fades during the day after I have some coffee and food, or it gets worse and I can't stand noise or light - or anything! That's when I break down and take a pain killer. I use either Percocet or Darvocet. Anyone else have to use pain killers? Also, my pain is usually between the top of my spine and the back of my skull. Others?

In peaceful silence

Jana

Jan,

I'm scheduled for the study on June 11th, unless they have a cancellation and can get me in sooner. I hope that happens, I just want to get it over with. Thanks for the encouraging words. I tend to be a little anxious and I also have OCD, which I'm being treated for...thanks again!

Cheers~

Jana

Many blessings on you and your new family! Have a safe and peaceful pregnancy.

Hugs,

Jana

Ok, now I'm really worried that I won't be able to sleep at all. I have a hard time falling asleep in my own bed, and can't figure out how in the world I'll fall asleep in strange quarters with my body all wired up. I already take something to 'help me sleep', but it really doesn't do much. I'll go in really tired, but unfortunately that doesn't make too much of a difference, since every night I'm so worn out that I turn off my light by 8:15 anyway. I'm just have to try and stay calm.

Thank you for taking the time to answer my questions in such detail. I really appreciate it, and thanks also to tearose and mkoven.

Ciao~

Jana

Hola Everyone~

I'm going in for a sleep study soon, and was wondering what experience others had with this test, and how many of you have sleep apnea. I wake myself and my boyfriend up by my gasping in the middle of the night, and they're pretty sure I have it. Please share your experiences. I'm worried I won't be able to sleep during the test!

Thanks,

Jana

Can I ask how it came about that you had this MRI done? I have a lot of pain at the base of my skull, lots of headaches. I would love to get that looked at....Thanks

Jana

A great source of drug info including side effects and patient reviews is on webmd.com. It's under the "drugs" tab. I use it all the time to check side effects and see what other people have to say about whatever drug it is I'm using/considering using. I agree with the rest...You certainly started at a very high dose. Considering a lot of us are drug sensitive, perhaps even starting with 1/4 of a pill might be enough for the first week or so.

Hoping you feel better soon!

Jana

I have to agree with Firewatcher/Jennifer. We're all here to support you and perhaps you need to sit down with your husband and really talk about everything. A negative support system brings you down more than anything! Hang in there, and know we're all here for you!

Ciao~

jana

You certainly aren't alone on this one. I get tremors so badly that sometimes I can barely hold a glass, and once in a while, especially at night when I'm laying down, one of my arms will jerk up quite a bit - just out of the blue. I know I have some ischemic lesions on my brain, and they can't do another MRI to check how bad it is now, because I received a pacemaker in 2006. It's very startling though. Hang in there. You're in good company.

Cheers,

Jana

How many women here are in perimenopause or taking birth control pills? I thought I'd try going off my pills to see if that affected how I felt, but I'm 47 and also going through all the wonderful delights of night sweats, hot flashes, and insomnia. What are other's experiences?

Thanks,

jana

What an absolutely beautiful remembrance for someone who was close to your heart. My sympathies...

Rene~

Now, I've seen your photo and you looked very pretty. I know you've lost too much weight, and I've got the same reddish/purplish circles under my eyes- heck, they take up half my face it seems! So don't be too hard on yourself. I'm sure you're still a very attractive woman. If I use any make-up, it's for those undereye circles...and don't forget to count your 'you know what'!

Cheers,

Jana

I usually don't have any swelling in my legs, I'm an abdominal pooler. How about you?

Mae~

I know exactly how you feel! I get up around 6-7 am after a restless night's sleep, and feel like a walking zombie until around 10 am or so. Then I make myself stay up, unless I'm really tired, and then I'll try to nap for 1/2 hour. But I don't understand how you can stay up so late. By 7 pm I'm utterly exhausted, and go up to bed to read for perhaps an hour until I can't stand it any longer and must go to sleep. You'd think we'd sleep well then, but I rarely sleep a solid chunk at a time. I feel like almost death by 7:30 or so at night, and I know every day seems like it'll be the same. I almost can't take it anymore...I start wondering why I'm even alive when I'm really down.

Hang in there with me. Does anyone know of anything that helps this all-consuming fatigue?

Jana

Thank you both, Firewatcher and Flop. I love this Forum!

Hi Summer~

The only way to know if compression hose will really work for you is to try the waist-high kind. Your doctor can give you a prescription for these and your insurance will probably cover the cost. That said, after I got two pairs thru insurance, I tried them several times and they made no difference at all for me. I have low-flow pots, too.

Hope this helps!

Cheers,

Jana

Hey Fellow Forumers~

I am finally going to see an endocrinologist and need some of your wisdom on which tests are the important ones to have done. Adrenal gland function? Blood flow/oxygen levels? Level of hormones? Please help if you can. It'll be greatly appreciated!

Take care & cheers,

Jana

Sometimes I could just scream because I consistently hear 'but you don't look sick at all' so many times. That, and how people will glare at me when I use a handicapped place to park...Sometimes I won't even use one because I get tired of people giving me nasty looks. On my bad days, I just look really sick with droopy eyes and I drag around. I probably look just like anyone else that has the flu or a bad cold. It's kind of a good news/bad news kind of thing.

Interesting poll, Mae.

Cheers,

Jana

No! It's one of my pet peeves. Doctors should call you back in a reasonable time period. I've always been told that a doctor, being a professional in a business (yes, they are in business) should call you back that day or the following one, unless he's out of town or there's another extenuating circumstance. Errrr. I'll growl for you!

Hope you receive a call soon,

Jana