stillkickin

Thanks everyone,

I will be continuing to research on how and where to get a service dog and will post what I find out on here so everyone can see.

I know of someone here locally who has POTS/NCS who has a service dog. I am going to try to meet with her this week so I will pass on whatever information I get from her.

I agree with you Suzy- I think I will be a little more comfortable being alone if I have a dog to keep a eye on me. I am so anxious to find out more about the process.

I will keep everyone updated.

Babette

Were you able to talk to the person with the service dog? I am thinking of looking into getting one too and I would love to share info with you!

I'm sorry this is somewhat off-topic, but I can't find any info online with POTS/Tamiflu and what I should expect.

I apologize. I am very afraid right now.

I took Tamiflu and I was fine. :0) I think it made me feel bad a little longer, but overall it made the flu a lot better than it could have been.

I have been having to get a TON of IVs lately and I have some questions about IV hydration.

-Does it make anyone else really tired to get an IV? I always get sooooo sleepy and achey towards the end of the hydration and then for the rest of the day. Anyone know why?

-What can help when the IV is put in wrong and the fluid gets into your tissues instead of your vein? It hurts a lot and I was wondering if I would treat it like I would treat swelling?

-Are there any negative effects from getting a lot of IVs?

-My veins are getting harder and harder to deal with and I'm getting poked several times before the doctors are able to find one that works. It also has been getting a lot more painful for me to have the IV in. Will this get worse as I get more IVs?

-Does anyone else get hives from the IV? I thought it was the tape they used, so now they are using other stuff to hold my IV in place, but I'm still getting hives around the IV site.

And just on a funny note, while they were putting the IV into today "You're so Vain" came on the radio and it made me giggle. :0P

I never had problems with my skin (other than eczema when I was a baby) but now I have a whole bunch of problems. For one, there is acne which is so fun, and my skin on my face which used to look ok now looks all blotchy (not to mention dark circles under my eyes). I also have been getting weird bumps all over. It kind of looks/acts like mini-chicken pox in that the bumps hurt, then itch, then scab over, then go away. The ones on my arms and stomach area go away within a few days, but I've had the ones on my legs for weeks now. (maybe its just the bad blood flow which slows healing?) I was wondering if unhealthy skin has anything to do with dysautonomia or possibly medications given to help with dysautonomia symptoms. Thanks for your help! :0)

I went on a stationary bike for the first time since I've been sick about a week ago. I only went for 5 min, and I felt fine while on the bike, but once I got off, I was so weak I had to lay down for a few hours but I could still walk if I had to. A few days later I went on the bike for 15 min. and I was SO weak after I got off! I couldn't move at all! My phone was about 2 feet away and it took me 30 min to get to it to call for help. Even lifting my fingers was difficult.

A few days later, I went on the bike for 5 min and the same thing happened but lasted less time.

Does anyone know why this happens? I was expecting to feel lightheaded if I had any negative reaction to exercise, but this was different. I really couldn't move, but not because I was paralyzed. It was more like I had hundreds of pounds of weight pushing down on me.

Anyone have any bad experiences with turmeric? This sounds really exciting, but I'm always scared to try new meds...

The dysautonomia youth network of America (dynakids.org) is a great organization with awareness and support as their main goals.

Congratz!!!! Keep us posted! :0)

I ansered no but I want to clarify. Before I got POTS I think I still had some dysautonomia which caused me to feel sick sometimes which I blamed on viruses. Since I got POTS, I blame any ailment on that. So really I don't know. lol

A cruise would be perfect! I went on a cruise and the only trouble I had was one of the on land excursions when the temp. was like 107 with high humidity. Otherwise going on the cruise was great because most things involved sitting and relaxing, something I think potsies excel at! haha

I cannot even fathom sleep until at least 11:30, and I usually don't go to sleep until 12-2 in the morning. I would love to sleep in until 2:00, but my parents get me up between 10:00 and 11:00.

I have the same thing. I feel almost normal at night, like I could run even, and then in the morning I can barely do anything. My dad thinks that if I wake up earlier, it will be better, but I don't know. I'll test it out and let you know if it helps! :0)

(BTW I'm new too)

That sounds really strokie. I've had a few strokes and that is pretty much how one feels, it just lasts longer. Of course, it could be something else too. I'm just going off of my experience. I haven't been through med. school...yet. ;0)