potsgirl

No, I can't tell my pacemaker is there at all, although when it was first placed I was pretty sensitive/protective of it. I have a pretty bony chest, so it does look kind of obvious if I wear thin shirts, but that's easy to avoid. I have two leads, and my pacemaker is from Guidant. So far, so good. When you go in for your pacer check every 6 months (or they can do it over the phone), they can read what's happened with your heart during that entire time. Pretty cool.

I wonder why they're not treating your arrythmias/atrial fib with Coumadin or another drug? Or have you tried that and it didn't work for you...You may also PM me if you'd like, or email me, if you have any more questions. It's an easy operation, and I just stayed one night in the hospital.

Cheers,

Jana

That's a tough question! I've found it to be both a blessing and a curse (to use an oft-quoted cliche). I joined, took myself off for awhile, and then recently joined again to join with others in the 'chat room' if we get that going. You just need to be careful, and limit your friends to people you know pretty well. You tend to get bombarded with a lot of stuff that I personally didn't find that interesting...You can always join, check it out, and then quit if you don't like it.

Cheers,

Jana

I'm also in Facebook, but am unaware of the 'chat room' that's available there. How do we get to it? I'm under "Jana Tschopp". Yup, it's a good old Swiss name. Try spelling that out every time you need an appointment somewhere. "NO, that's 'T' as in 'Tom', 'S' as in 'Sam'.......

Cheers,

Jana

Of course I'm not sure about CA, but I know that normally it's no problem for you and your husband to have separate insurance plans. If your husband got his through his job, and you got yours through your job, there would be no problem with that, and family insurance is incredibly expensive, so I know of others who do it in this manner.

Good luck!

Jana

I'm not hyperadrenergic, but I'm always pale. It's always flattering when you have two very dark undereye circles to go along with it. I really need to do the self-tanner....My feet will turn bluish quite often, too.

Cheers,

Jana

My opinion is that you get yourself some help ASAP. If you can't even drink water, and you're in that much pain, something's WRONG. Please go to urgent care or the emergency room, and let us know what happens. There are several things it could be, and you may need immediate attention. Also...I sure hope the only thing you're eating for an entire day isn't a Happy Meal, is it?

My best,

Jana

That's the great thing about Mayo - they always work with a team approach, you're right!

Which location are you going to? If you're going to Rochester, MN, where they have the ANS specialists, I would recommend Dr. Brent Goodman. He was terrific with me. I saw him 9 months ago.

Cheers,

Jana

Have you had a tilt table test done yet? What meds are you on? Who gave you your previous diagnosis and what were the factors they used? What does your BP/HR do? If you could give out a little more info, it would be very helpful.

Thanks,

Jana

I've seen this gentleman before, but we can all use reminders! Thanks for posting this inspirational clip!

I think a chat room is a good idea, but it's been raised in the past, and nobody participated. I tried going on several times, but it was empty. Anyone know how to set up a chat room? I would be glad to help, but have no clue as how to set it up....

Jana

Hi Daisy~

Before I was diagnosed with POTS/OI, I found out I had dilated cardiomyopathy and atrial fib. I was in congestive heart failure, and I had pretty bad bradycardia. This was diagnosed at Mayo AZ, and I was put on Coreg and Coumadin/Warfarin. Then I had a pacemaker placed for my low BP about 4 years ago. Ablation was never mentioned, but you obviously have some different issues than I do. In fact, I had never heard of ablation until I joined this forum.

The pacemaker is now working about 40% of the time, and it does give me relief knowing that it'll keep my BP from falling too far, although I still get readings of 65/50 on my bad days. I was able to go off the Coumadin, which was nice - it's a pretty nasty drug. The Coreg lowered my BP too much, so that was out, too. The biggest downfall is that you cannot have an MRI with a pacemaker, and you can't go through security machines. There have been several times where I really needed an MRI, but I'll have to wait....

So, the pacemaker has been good for me, but I can't offer any advice on the ablation, except if they don't need to cut, I don't think I would. Just my opinion. I'm sure you'll decide what's right for you! Please feel free to PM me if you'd like.

My best,

Jana

Do you mind my asking why your health insurance may be gone after the end of October? I'm guessing it's through your work place, but I'm not sure. I have had to use COBRA a couple of times throughout my life, and while it's expensive, it can be a life saver. It'll cover you for up to 18 months if necessary, with no pre-existing condition limitations. You really can't afford to have a 'gap' in your medical coverage, and make sure you get a letter stating the time period you were covered with "X" insurance - whatever company you have now, and from COBRA when you go off of it (if you decide to take that route).

There are options out there, and hopefully you won't need a gap insurance for very long. I went from paying around $80 per month for my insurance at work, to about 6 times that on my long-term disability plan's insurance coverage. Thankfully, I go on Medicare December 1st!

Best of luck!

Jana

Hi Erika,

I can certainly understand your hesitancy about returning to a place where a resident may have H1N1 (or another flu type), and of course it's your decision. For myself, I know that any public place can have people with H1N1, and I can't stop going everywhere. But, it's obviously smart to take precautions so you don't pick up the flu from someone else. I would wear a mask, not come into close proximity to the possible infected person, not touch anything they've touched, and wash my hands as much as possible. Do you know if they're going to test this person or treat him/her? Considering all of the illnesses we could pick up anywhere/anytime, we can't simply stop living our lives.

I'm sure you'll make the best decision for you.

Take care,

Jana

I first started getting really sick after a bout with 'Valley Fever', which is a virus that can hit newcomers to the southwest. It's in the soil makeup, and it's a pretty nasty, usually long-lasting virus. So, I'd say my dysautonomia, and possibly heart problems, was related to that virus.

Cheers,

Jana

Actually, with my low BP and a great poker face, I think I might make a terrific criminal. Now, if only I had the energy to leave the house....

The others have done such a great job of encouraging you and giving you support that I'm afraid I don't have anything new to offer, except that I've been down some of the same roads you're new traveling, and have felt pain and loss also. I would give anything to go back to my work, which I loved, and I really wanted a second baby, but was too sick to try to conceive. There are so many losses we deal with, but in turn there are so many valuable lessons we learn.

It's healthy to grieve for things we no longer have or perhaps never will, as long as it's balanced by strong hope and a positive feeling toward the future. Here's hoping that you're out of your slump and feeling much better soon. Spend some time taking care of just 'you'.

Cheers,

Jana

Hi Janey,

I hope you're feeling better today! It sounds like you have some kind of stomach virus, which is no fun and can put you off food for several days. It's great that you're keeping up with your hydration. I would probably call your doctor if you still can't keep food down by today, just in case it's something you need antibiotics for...Hope you're better soon!

Cheers,

Jana

Maxine,

What a beautiful family you have. Thank you so much for sharing this part of your life with us. What joy they must give you!

Cheers,

Jana

What kind of doctor recommended this, and what are your other symptoms? Are you at high risk for needing a colonoscopy? The prep is pretty awful, and it's very difficult for some of us to go for a day or two on only clear liquids...I'm supposed to have one and keep putting it off. If you do end up having them, the gastroenterologist needs to be fully informed of your health issues and some precautions will probably need to be implemented.

Good luck, and let us know what happens.

Jana

Hi Julie,

I'm not 'homebound' but I'm certainly at home a lot. I try to get out four mornings a week for walks, and perhaps a short errand or two. Other than that, it's doctor's visits and the occasional lunch out with my boyfriend and perhaps a few friends. No dinner or evening socializing, because I am exhausted by around 4-5 pm. I'm on the opposite schedule you're on - I'm asleep by 7 or 7:30, and up around 5/6 am. I'm on the computer a lot, read, watch some tv and keep up with the laundry and some other light cleaning.

I think one of the more difficult aspects of this disease is how isolating it is. I no longer can work, and I don't get out to places where I would usually meet people - church, yoga/other gym classes, taking a class, etc. And you're all right...When I feel really sick, the last thing I want to do is be around people. It's exhausting. I try to write on the Forum and be supportive as much as possible.

A little about me: Previous anthropologist/archaeologist who worked for Indian tribe and then for the county (desk job); from Tucson, AZ; 47 with one son in CA; love to read and write; previously from Iowa; boyfriend is an English teacher at a local high school.

Cheers,

Jana

I have to be careful to always use 'ALL Free' on my laundry, and to only use Ivory or sometimes Dove for soap. And yes, unscented everything! Perfume makes me feel particularly awful - those perfumed ads in magazines can have me sneezing and miserable very quickly...

Yes. The autonomic nervous system controls your body temperature, along with many other things.

Just my opinion, but I've had allergies since I was a baby, so I don't consider them to be related to my dysautonomia. I think that a lot of us are med-sensitive, but I've always been that way, too. Hmm. I wonder how many of us have seasonal/other allergies?

What does your allergist say about your symptoms? I've never heard of burning before, more itchiness, stuffy/runny nose, sneezing, the usual suspects.

Jana

Hi Daphne~

Welcome to our Forum! I hope you find a lot of help, info and support here. There's almost always someone who can relate to your symptoms and what you're going through. We'll enjoy getting to know you better.

Cheers,

Jana