SunsetParadise49

Hi! Since your daughter is still under the age of 25, I would suggest that she take a look at www.DYNAkids.org. There is a forum (like this) that she can join if she wants to meet people her own age.

Take Care!

This happens to me sometimes. Try drinking more, I know you probably hear that all the time, but it's what really gets me feeling a little less dizzy. Regarding the pupil thing, are your pupils normally not large? I'm asking because many Dysautonomics have large pupils.

Hopefully the extreme dizziness will pass very soon. Try the drinking more and eat something salty!

Take Care

Glad you enjoyed having Bernie!

Be honest with your doctors and tell them your concerns regarding EDS. Like someone else said, make sure that you are on an IV drip throughout the whole procedure and even a little bit after the procedure. I'm sure you'll do fine! Good Luck!!!

Aren't these pretty common in the general population?

I have a clump of some behind my left knee that are really ugly. I feel like it makes my leg look decades older.

Katherine

Hmm, I think they are. I know a lady who has them pretty badly all over her knees and she has fibromyalgia. So maybe they are more common with people who have illnesses??? Just a thought.

I have them on my thighs. I'm not sure if it could be Dysaut. related or not. I have two types of EDS though, HEDS and Classical so EDS might be a reason for them as well?!

Emily, thank you so much for keeping us up to date on Melissa's progress!

Melissa, I'm so glad to hear that you are doing a little bit better! You're still in my thoughts and prayers! I can't wait until you're swimming in your own fishbowl!! Take Care hon!

I have this too. It's weird, huh?

I'm so sorry to hear about your brother. I hope they can figure something out for him. I will be keeping your family in my thoughts and prayers.

Congratulations! I hope you have fun!

I take it for IBS pain...I didn't know that it helps with low blood pressure. I like it, I don't have any side effects from it. (I believe that there are some topics floating around here already about Levsin so maybe you want to do a search.)

Hi Everyone,

I saw my urologist again yesterday. I got my ultrasound results back of my kidneys and they are fine. He asked me if I take Cranberry pills and told him I do, but not right now because they were worthless. I added that I heard that every Cranberry pill is different and what does he reccomend. He gave me information on a site called Theralogix. (http://www.theralogix.com/index.shtml) I just ordered some (you can only order through the company as their products are not sold in stores) and they are supposed to be very helpful. I hope it works!

If I do have a "flare up" I have to urinate in the cups they gave me, get it to them asap or the hospital for when the office is closed. They will culture it and we will go from there. I haven't had a flare up for about a month witch does happen sometimes but hopefully when I do get the cranberry pills I won't ever have another one.

~Gwendolyn

Feel better Amy! Thinking of you!

Thinking and praying for you Melissa!!! We love you!

Has anyone tried botox in the armpits for excessive sweating? The prescription antiperspirant is not working well enough. I am ruining my shirts.

Karyn

No, but I've heard it works quite well.

I've been experiancing this as well but only when the lights are out...I don't think I have it any other time while laying down with lights on.

We flush unused/old pills down the toilet...for vials, I would suggest either dumping the liquid down the sink or the toilet.....there's really nothing you can do other then that. People go thru people's trash and if they would find it and use it, it could be real bad and you wouldn't want to somehow get caught in the middle.

Oh! Just thought of another thing....make half a mug of hot water, and then put a plain tea bag in to make the hot tea. Then with the other half, add ginger ale. It's good and can help a lot when you're feeling really icky with either a stomach ache or just nausea.

Thanks tearose for explaining sweet weak tea! I'll keep that in mind!

Hope you feel better soon! *hugs*

Sometimes just relaxing and falling asleep helps my nausea. I point a fan at my face and just take some breaths...it helps sometimes, but not everytime.

Then I make sweet weak tea and sip it.

Tearose,

What is sweet weak tea?

*hugs*

I'm sorry that you are feeling so sick. I have lots of times where I feel "OK" but then I crash and just feel terrible. It's hard, but we're all here for you when you need us. That's what is great about DINET because at least one person if not all of us understand what you are going through!

Take Care,

Gwendolyn

Oh Melissa! I'm so sorry that you are still not feeling too great! I think about you lots and am praying that you will recover soon!!!! Sending you lots of hugs!

Gwendolyn

Glad things are looking up for your mother....I hope she keeps on feeling better! *hugs*

Sending my thoughts and prayers. *hugs*

Antihistamines can cause problems with ANS dysfunctions. Some people are fine taking them, some just can not take them. I take Nasacort which does not have antihistamines just to be on the safe side.

Melissa, I'm so glad they found a cause. I hope you have a speedy recovery! Thinking of you!!! *hugs*