samannran

I'm so sorry you are dealing with this. As a gastroparesis sufferer, I understand viewing food as the enemy. It is very hard to deal with. I hope you find some foods that you can tolerate. It is hard not to be depressed. Please seek out help for your depression and understand that it is natural to feel that way when suffering from illness. Hope you feel better soon!

I have MVP with regurgitation & tricuspid regurgitation. I also had an ablation in 2003 for AV nodal re-entry tachycardia. My doctor said having heart disease makes the dysautonomia even worse. We know that!

Sorry you are having this problem. I'm a fainter. I use a shower chair & it's amazing how much that helps! Feel better soon.

I've wondered the same thing. I'm 34 with PAF. I also have MVP with regurgitation. I became more worried about the future when my stomach & bowels stopped working. I honestly can't imagine everything holding up until I'm elderly, but I'm gonna hope & pray for the best!

I'm sorry you are having such a hard time. Some doctors just don't understand how we feel on a daily basis. I hope you feel better soon.

Metaprolol made my hair fall out & I quit taking it. My mom is almost completely bald on top from atenolol. Some of these meds cause hair loss in some people. I took Lexapro for awhile & gained weight. It could be causing the weight gain. You just never know because everyone reacts to meds differently.

My doctor gave me a catalog for supportplus.com. She recommended their brand and told me to wear medium support full hose. The hose last a long time & customer service has always been nice. I did order some thigh high hose also but hated wearing a garter belt. I'm allergic to all adhesives, so a garter belt was the only option. Hose will give me a few extra minutes on my feet.

I faint more often the week before and the week of my period.

Education about your illness is key, in my opinion. Spend time researching your illness during times when your body will let you. With PAF, I don't have many good days & completely understand worrying about all the symptoms. Worry is normal, but make sure it doesn't consume your life. Hope you feel better soon.

I have been vomiting a lot lately since developing gastroparesis. I had my teeth cleaned a few weeks ago & they were extremely sensitive. I told my hygienist about the vomiting & she recommended Act Restoring mouthwash. It is helping. You might try that.

I haven't tried it. I will check into it. Thanks!

Have you tried Provigil? My doctor gave me samples, and it worked great. Unfortunately, my insurance wouldn't pay for it, even after appealing with my doctor's help, since I don't have narcolepsy. It's very expensive.

I have the same ear symptoms, but like you, I'm not sure if it's from dysautonomia. I have also noticed some hearing loss at times. I'm a fainter, and it's often when symptoms are bad.

Provigil helped me with my brain fog, but I couldn't afford to stay on it. It's too expensive.

I lowered my expectations, too. I have a stool in the kitchen, in the bathroom, and a seat walker on wheels. I've also been known to drive my scooter around the house on days I just can't manage. My weiner dog hates that!

We went to the county fair last night & she had trouble with the heat. She got really pale, complained about being dizzy & nauseas, and spent part of the time in a cool building where I had to hang out. The symptoms are just too familiar. I'm making her an appointment. Thanks everyone for the comments.

I have tried taking her HR & BP with my monitor, but she is very slim, and the cuff won't work on her arm. She hasn't mentioned noticing a difference with sitting/standing. I think she would tell me because she has watched me progress, and I have told her all about dysautonomia.

I may try to find a smaller cuff that would fit my machine before I take her in. Thanks so much for your help.

For the past two nights, my 14-yr-old daughter has been unable to sleep. This morning, she informed me that when she lies down, her heart starts racing. She was lying beside me when she told me & asked me to feel of her chest. Her heart rate was fast. I'm not the type of mom who runs to the doctor with every little thing, but this has me frightened. I started fainting at 14, now I have PAF.

Should I take her in for a check-up, or do I wait and see??? I have some great doctors, and given my diagnosis, if she does have some type of dysautonomia, I don't think it would take her years to get a diagnosis. I just really hope and pray she didn't inherit this from me.

Please let me know what you would do. Thanks

I have been on Cartia XT( a ccb) and Coreg for a few years now after trying numerous meds & med combos. I tolerate these two meds better than any I have tried.

Good luck finding the right med for you!

Samantha

I just had a colonoscopy & EGD this past Thursday. The prep was very difficult for me. I had severe chills, extreme fatigue, nausea, and blacked out a few times. If you are a fainter, make sure you have someone with you during the prep. I'm glad I went through it, though. The doctor removed a polyp & the EGD showed signs of gastroparesis.

I was told my neck/shoulder pain is due to a lack of blood flow to the area. If you suffer from orthostatic intolerance or hypotension, this could be the problem. It gets better when I lie down. If I sit up for very long, the pain is awful.

I have a permanent tag. Get one if it will make your life easier.

My doctor gave me a voucher last year for a trial of Provigil. It really helped the brain fog and mental fatigue, and I didn't notice any more palpitations than the usual. My insurance wouldn't pay for it, though, so I couldn't keep taking it. Too bad there's not an affordable generic!

I am thankful for a loving, supportive family. I am thankful I was able to do a little Thanksgiving cooking this afternoon with the help of my stool and lots of breaks.

My breathing becomes very shallow when I'm having a near-syncope or syncope episode. My husband raises my legs and reminds me to breathe. It's really scary for my family. I'm short of breath on a daily basis.