potsgirl

My sense of smell has increased too much! Perfumes and other odors can make me actually throw up when confronted with them too closely. I had relatives visiting about a year ago, and had to run for the restroom after holding my breath as long as I could. No fun. Movies and other events can be downright sickening. I really wish there was something to do about it - any ideas out there?

A home remedy that works certainly beats more medication, but for gas issues, I've found the generic of Gas-X to be quite helpful (Target, Wal-Mart).

Good luck!

As always, BellaMia, Julie, and the others say it well. I, too, am praying for you and sending you positive energy and strength. You can do it, although I really wish you were starting each med separately. Could you talk to the doctor again and tell him that your history indicates that it's much better for you to start one new med at a time and at small doses? Perhaps you could bring someone with you to help be another advocate?

Please let us know how it goes!

Cheers,

Jana

Good advice - not waiting to apply. I was told right after I had to quit working to apply ASAP, as the process takes a long time and you're better off being in the process and ending up not needing it then to have to apply later when you're really in dire need!

Oh my gosh, an IV makes me have to pee about every 45 minutes!

From what I've heard, and personally experienced, almost everyone is rejected on their first and second try. I got my attorney and we went to court (most don't collect any fees until you've been paid and get your back benefits. The government takes this out of your back benefits for you, and sends you the rest - usually 25%), and I was approved that day in court. So, don't be surprised if you end up having to go to court with this. You MUST find a doctor who is willing to work with you on this and do documentation. I forget now if you have insurance, but Mayo Clinic and some of the other major clinics that work with POTS will work with you on a payment plan.

My heart goes out to you - I've been there, as have many of us here. I'm sending you strength and positive energy. Keep fighting! They want you to give up....

Best wishes,

Jana

Hey Friday7~

I also run a very low body temp. I'm usually around 96.8. Luckily, I have a doctor who knows that if I have a temp reading of 99, that it means a fever with me, but it usually isn't a big deal because it would equate to around 100-101. This is rare for me, however. Usually I'm on the low side, and get cold very easily, although I don't know if the two are related.

I'm sorry you're feeling so badly so much of the time. Perhaps a specialist might be able to respond to you in a more knowledgeable fashion.

Cheers!

Jana

Issie and All,

I pushed for April 16th and am not sure if I can make that date now - so sorry everyone! I could probably figure out a way to do the 16th still, but I'll be up in Phoenix anyway for tests at Mayo on Friday, May 20th. The 21st would be great if we could swing that. It's hard for me to get to Phoenix and it gets expensive with the hotels, too. So...if I'll be there anyway, I would love to get together with whomever is available then. Also, June would work for me since David, my boyfriend, is done teaching at the end of May and is more available to drive me places. The second week of June we're going to Iowa, but other than moving at the end of May, that's all I have planned this summer.

I know I've mentioned it before, but could we email each other instead of PM'ing? That way, we can "reply all" and not have to send out so many messages! The other thing is that we should probably move this conversation to the other Forum that is non-POTS related...

Cheers,

Jana

I'm also very heat intolerant, and live in Tucson - that's some good thinkin'! Like Sue1234 I'm interested in what meds they're going to have you try. I'm glad that your Mayo visit seems to have worked out well for you.

Thanks!

Okay, where do I start? I was diagnosed with heart problems before I was diagnosed with POTS/dysautonomia...about a year in-between. I got really sick, went to Mayo Arizona, and found out that I had severe bradycardia and needed a pacemaker, dilated cardiomyopathy, atrial fib, and congestive heart failure. My ejection fraction was low, but not horrible, but I had many symptoms. I was put on Coreg and Coumadin (blood thinner). Things gradually improved over the next couple of years.

I was diagnosed 5 months ago with a blood clot on my pacer wire that is planted in the right atrium of my heart, and am back on Coumadin for that. It is loosely attached, and swings every time my heart beats. Yikes! My echo at three months showed no change in the clot, and I go for my next echo in mid-May, at 6 months. My other pacer wire is obstructing my tricuspid valve, causing moderate to severe regurgitation. I think that's enough!

Hope everyone is as well as can be~

Cheers,

Jana

I can't add anything more eloquent than what has already been written. I want to add my support and strength to you and your mission!

Hi Victoria~

Are you taking all of the meds you listed? Did you start them all at once or gradually over time? I know that Benadryl can give me a little relief, but also makes me very sleepy.

Hope you're well, and see you this summer in Iowa.

Cheers,

J

I have struggled horribly with math since I hit Algebra. I've never heard of dyscalculia, however. I'm going to look it up right now. I also can't draw, and I would love to be able to!

I have had horrible teeth for as long as I can remember. Yes, I had amalgam fillings, but they're slowly being replaced with crowns and/or root canals and crowns. I wonder if having major dental issues is in any way a contributor to our illness....

How does everyone feel about going to email to do the planning? I think it's very difficult to do via the posts. I would LOVE to meet everyone. Lunch definitely works the best for me, and I'll be driving up to Phoenix to meet - or should I say my boyfriend will be driving me up....

My email is jana_tschopp@hotmail.com. Let's get this thing planned! I can do April 9, but the 16th would definitely be better. Email me and let's take a vote.

Arizona POTsies, unite!

Cheers,

Jana

I don't know about the rest of you, but I am extremely thirsty in the morning. I think I'll take Enko's idea of keeping water by my bed and drinking it when I wake up during the night, which is usually several times. Being dehydrated can certainly give you a major headache, so drink up!

Cheers,

jana

I have been tested for small fiber neuropathy at the Mayo Clinic in Arizona. It's the only test that is pretty accurate for that diagnosis. From what I understand, it's difficult to find a place that does the biopsies. I had to go to Mayo, and then they sent off the speciman to a specialty lab in New York. The way I understand it is that you can have POTS/dysautonomia, and then you would usually develop the SFN after that, although not everyone follows this path, of course. We're all different.

Mine started with burning feet and then extreme pain in my hands and wrists, to the point that they felt like all of my bones were broken. I'll be trying the Alpha Lipoic Acid soon. My neuro at Mayo also had recommended trying it if my Lyrica didn't work. Unfortunately, it doesn't.

Good luck,

Jana

Tearose,

Which Polar monitor do you use? I'd like to get one, but would like to know what model number your is, if you don't mind.

Thanks!

you've made the right choice. dr. goodman is worth the effort! Good luck, and let us know how it goes....

Sue1234,

Sorry, I meant HIGH Ig(A).

Another vote for Dr. Goodman at the Mayo Clinic in Scottsdale!

MomDi: Stephanie Lake was my attorney for my disability matters. She was great and got me my disability very quickly - the judge during my court session gave it to me immediately.

Everyone in the Phoenix area: Why don't we all get together one of these Saturdays? I think it would be great!

Cheers,

Jana

AzGirl,

Will write more soon, but would love to get together for lunch in Chandler. I tried to PM you, but it wouldn't go through. A weekend would work, any dates in mind? Thanks for the informative email....Will write more soon.

j

Hello Everyone!

I recently had new blood work drawn that showed a low level of albumin (2.8) when the normal level shouldn't go below 3.5, and a high Ig(A). Anyone familiar with these? I've looked up some stuff on the Internet, but would love to know if others have experienced this and what the tests/treatments were. The hospital was supposed to send someone to talk to me about the low albumin, but I was discharged before this occurred. I was told to get in touch with my cardio about the Ig(A).

Thanks for the help!

Cheers,

Jana

Hello All~

Sorry I haven't been on recently. I've been in the hospital due to a bad fall where I hit my head and I'm on Coumadin. It always ensures you a couple of nights in the hospital. ALSO: I was found to have low albumin and HIGH Ig(A). Anyone familiar with that?

I have not been able to try the linoic acid yet. Does anyone have a good brand to try? I haven't been able to get out shopping yet since I went straight to a motel from the hospital - they're doing construction on our home.

Thanks again for all of your replies. I hope to try this supplement in the next week or so.

Cheers,

Jana

Todd,

That was a lot of time and effort on your part to spell it out for us. Kudos to you!

Cheers,

Jana