DSM3KIDZ

Well I am definitely going to bring this up to my POTS doc in June. Maybe their is a cns depressant? Who knows.

Roselover- thank you for sharing with me, at least now I don't feel like I'm the only one. I'm going to see if my doc will prescribe a low dose 2/day for off label but I doubt it since it does have such a bad stigma. I just hate knowing there is a drug out there that gives me my life back and I can't have it.

For those who replied about steroids I've never tried them but using them longterm is unsafe?

Dayna

I have been diagnosed with idiiopathic autonomic neuropathy. It affect the whole autonomic nervous system. sometime the docs write autonomic dysfunction on my orders so they are one in the same. Go Mayoclinic .com and look up autonomic neuropathy.

I have POTS and Gastroparesis which is both caused by my autonomic neuropathy, also migraines.

Some people think becuase I have this my hands and feet hurt etc but they dont, that 's periperial neuropathy.

Well you can PM me if you have any more questions.

Dayna

Well wish me luck, I leave tomorrow and will be gone for 7 days. Thank you all for your advise for the trip and I will update everyone when I get back.

Dayna

I know how your feeling, I really want to try water therapy but the getting to the gym is the problem.

I hope you can figure something out.

dayna

Thank you everyone for all your great ideas and warm wishes for a happy trip. It might be exhausting but just seeing the kids expressions and excitement is well worth it.

I'm leaving on Sat at 2 in the morning to make it to the Chicago airport by 4:30 because our flight leaves at 6:00. Hopefully the kids will catch their zzzzzz's on the flight.

Thanks again and I'll post on how everything went.

Dayna

Sometimes I take Vicodin for my back pain and migraines. Well I only take it about once a 1 to 2 x a week and I ALWAYS feel better, like I don't have POTS, I have energy and am able to complete all my tasks. Well I know it's addictive, been there...........and I know it's a narcotic but I was trying to figure why it makes me feel so much more active so I checked my rates the last 4x I needed it and standing my bp was 122/84 hr 82 than 3 minutes late it was 120/84 hr 76 and after 5 minutes it stayed hr of 76. MY HR IS NEVER 76.

Anyways my question is why does the med actually take my POTS away? Would all narcotics do this to anyone or is there something in the meds that help with our illness?

I wish it wasn't a narcotic because than I have found my miracle drug but because of the addictiveness and overall long term side effects I can't take it regularly. And docs won't prescribe alot of it.............I understand why but still wish it was safe to use regularly.

Anyone else have this experience with vicodin or a narcotic?

Dayna

Rachel where would you get electrolyte packets?

Dayna

I hope you finally get some results and answers for you gi issues. If it comes back negative I would suggest doing the 4 hr study.

Goood Luck

Dayna

Hello, I leave for Florida on Sun and will be there for 7 days. I am so nervous. I planned the trip when I was feeling better and lately I've been feeling sick and don't know if I can handle a big trip. My parents took off of work and everything so I can't cancel,,,,,,,,,,,,,plus the kids are way to excited.

Anyone with POTS been through Disney world and if so any valuable suggestions for me. I already assume I might need a wheelchair since I can barely walk a mile but I'm going to do everything to avoid it.

How about flying any suggestions?

Dayna

Does anyone get chills just when they lay down? I will be fine upright doing whatever than instantly when I lay down flat the chills just shoot through me and I feel freezing.

Dayna

I'm so sorry for your loss. I'm praying for you.

Dayna

I feel it in my head also I'll get real shaky.

dayna

I don't even know what to post because I feel so much sorrow for you and your family. You are in my prayers and I hope they can make your mom confortable through all this.

I'm so sorry

Dayna

I can no longer wear contacts my eyes are too dry. It stinks.

Dayna

Nausea was also my first and only sx. Now it comes when I'm in a pots hole or I'm pushing myself too hard. I also have gastroparesis due to the autonomic issues.

Dayna

That's a tricky question. Maybe your stomach empties even slower in the evening and there is undigested food sitting inside your stomach and at night you can't digest it ad needed??? Just a guess

Welcome to the forum!!!!!! I know what you mean about good days and bad days. This illness reminds me of a rollercoaster ride. I also got this illness in 2004 but in August.....reason unknown. Well thanks for posting information about yourself and I hope to get to know you better here in cyber world.

Hang in there and don't give up on your "I can live with this illness" outlook because you can and I'm sure you already know it's quite a ride.

Dayna

I get those sensations when I'm trying to fall alseep, I have no idea what it is. Try to find a doctor that is willing to help you.

dayna

I can play at a huge water park going through tunnels, picking up my son etc. and I have little back pain.

I go to sleep last night with no extra activity during the day and I wake up in alot of pain. From my neck down to my butt bone.

This keeps happening every couple months. does this sound like an inflammatory illness?

I'm already restricted by this illness and constant migraines, when we throw something else in the mix I get very discouraged!!!!!!!!!!!

Dayna

I am still thinking about this but my illness is not behaving so I donn't know if I'll be able to be as consistant as I'd like. Well see though on Friday we are interviewing at a private school.

dayna

This has just been happening to me recently and it stinks, I love reading to my kids, on some days it's all I have left to do with them. I assume this is just another sx of our ANS being all whacky.

Hang in there

Dayna

Welcome to the group. Based on your dx we have alot in common. I hope you find treatment soon that helps.

Dayna

I hope the best for you Melissa.

I continue praying for you and your family

Dayna

Liz B hang in there. Eventually the life adjustments we make become our "new normal".

Try to stay positive and I hope you have a better day tomorrow.

Dayna

I didn't believe I had POTS at first either. I had bad nausea but that's it. I did find out that the nausea was so severe it was kinda of masking the POTS. I wasn't able to stand long without feeling sick and I thought it was just because I was sooo nauseated. Well I finally have the nausea undercontrol and now the autonomic issues are more intense. So I don't know if there was a progression or not.

I'm glad your sx are mild and I hope they stay that way or even go away completely.

I'm also sorry to hear about your brothers

Dayna