JacobyD

I've been on Lyrica for about 18 months (75mgs twice a day) for severe nerve pain in my face and throat. For me the effect seems to be the opposite. After I take it, my system seems to calm down a little bit and my nighttime dose helps put me to sleep. As for side effects, that's hard to say because I feel like junk most of the time anyway. I forgot to take my dose one night about a week ago and woke up in the middle of the night with the sweats and a rapid heartbeat. Not looking forward to coming off this med, but that's just me. We are all different.

I would definitely talk to my doctor about an alternative if I were you. Good luck.

I've got Barrett's and would rather take meds for GERD than take a chance it will get worse. They do have a procedure to remove the abnormal cells from you esophagus, but esophageal cancer is the fastest growing type of cancer in the western world right now. Do what you need to do to keep acid where it belongs. I take Pepcid AC (prescription strength) as it seems to be more gentle on your central nervous system. Just a preference.

Glad you're home safe, Nina and good luck with your test tomorrow.

I've had the exact same feeling in my neck. Maybe its because we use the same mechanic? I doubt it. Be well...

Hi, Melissa. I haven't posted much lately, but wanted you to know you've been in my thoughts. Made my day to see you back online.

Be well!

This has been my most debilitating symptom since day one. Luckily, for almost everyone it completely subsides over time. Hang in there... it will get better!

You can have a local compounding pharmacy make you some Domperidone. There's one about 2 miles from me and I'm not in a big city. I really did well with it, though my gastroparesis is no longer much of a problem. I've got yet another endoscopy coming up soon. Yuck.

I took Reglan and it did nothing for me. I then had a compounding pharmacy make me up some liquid Domperidone and it worked great. We're all different.

You need to address the GERD as that could damage your esophagus. I'm not sure Reglan will really help you there. If an antacid works, that might be better than a proton pump inhibitor (PPI - Like Nexium or Prilosec), as the PPIs work on your nervous system to shut down what pumps acid into your stomach. An antacid breaks down acid that's already in the stomach. You don't want to destroy all the acid, as that can lead to problems with bacteria. Again, we're all different.

I hope you find something that works for you. I wouldn't be too frightened as you can always stop taking it and try something else!

Don't know if any of you old-timers remember him. Brent Chance was one of the first people I corresponded with after I was diagnosed with dysautonomia over 5 years ago. When I began posting at the NDRF forum, I realized we had very similar symptoms and Brent started giving me tons of information and support. It appeared the worst had passed for him.

He was a great friend, though I never met him. I learned a lot about courage and dignity from Brent. He had other complications and passed away on April 13th, 2002. I think about him regularly and wish I could say "thanks" just one more time. My thoughts and prayers have been with his family ever since, and I owe him a huge debt of gratitude.

Miss you, dude.

This is great, Nina!

The inability to instigate a swallow has totally trashed my quality of life. I also have tons of facial, mouth, and throat burning. If I had a real diagnosis (something autoimmune for example) I would try the IVIG treatment. Anything at this point. Ativan worked for about 6 months, but I built up a tolerance and its taken more than two years to ween off the high doses I was on. I'm just one of the unlucky ones when it comes to meds. They either do nothing or make me worse off. Ah, well. I'm sure things will get better.

Keeping you in my thoughts and prayers, Melissa.

Howdy, Nina!

Glad you had a good appoinment and found a decent doctor. Just some info. I tried Neurontin and had lots and lots of side effects. Then I tried Lyrica (pregabalin). Its a bit pricey, but I have no side effects and it works on the nerve pain really well.

Thinking of you and yours! Take care,

Dan

As you can see, people have many different reactions to this medication. I used to be on Prilosec and then Nexium, but switched to Famotidone - a prescription version of Pepcid.

Just keep in mind that Prilosec and Nexium are not antacids. These medications work on your central nervous system and in effect tell your brain not to pump acid into your stomach, which is why some people with autonomic problems can have trouble with them. Famotidone also effects the nervous system, but it works to break down acid in the stomach and doesn't seem to overload my already delicate nervous system.

Just my experience. The comments about keeping an eye on your esophagus for cancer are valid. I'm surprised your doctor didn't take a biopsy while he/she was there. I had the same thing and a biopsy showed I had a very mild case of Barrett's Esophagus, which means the cells lining my throat have changed "form" and can be considered pre-cancerous. This means I need to be monitored closely, which is a good thing in my opinion.

I hope you get relief and find some answers.

Been here for since the beginning (check out my member number). Sure doesn't bother me!

DanJ

How STABLE is that hospital stand and computer screen?

The reason I ask is I have two cats and they are big cats, about 13 and 15 pounds...could they trip this table over or knock off the screen? Like is the table top heavy?

I have a laptop but it's getting older and your idea sounds good if you don't have little kids or cats around.

Its very stabile. Its not top-heavy at all. Just make sure you by hospital-grade and you will be fine. Mine has been a life saver. When I'm really too wiped out to use a computer, I use an iPAQ Pocket PC like this one:

Hope this helps!

Dan

I bought a standard hospital side table that I can slide in front of me while propped up on pillows. The main computer unit is on the floor and the mouse (trackball), flat screen display, and keyboard are on the table. It works great and is much better than a laptop any day!

http://www.google.com/search?q=hospital%20...sa=N&tab=iw

Melissa, thanks for the Hormel link. I'm going to forward some of that info on to my GI doc.

Hey, Morgan. I think you already know I've been on and off PEG and PEG-J feeding tubes for about 5 years. Swallowing and throat problems have been my #1 symptom and I've been on a PEG tube full-time for about 3 years now. I had a PICC line (IV) for about 6 weeks at one point. I went from 204 to 144 pounds over the last 16 months, and have only just recently gained about 10 pounds and am back around 155. I need to be at about 175.

My current "diet" consists of 5 cans of Glucerna per day (no sugar and about 225 calories per can) and 1 can of Ensure Plus (12 grams of sugar but about 375 calories per can). I am also able to eat small portions of fresh organic almond butter and drink thin liquids (lots of water). The almond butter is extremely high calories and is natural. I also use a juicer to make sure I get carrot/lemon/celery or whatever I can when I can tolerate it.

I still choke quite often when I try and eat, but have improved slightly. The biggest drawback with my feeding tube is that I am literally tied to it all day and it makes getting around very tough, even though I have a small pump and backpack. Its all just a pain but is well worth it if you need to gain weight and get nutrition. You can't even begin to heal or feel well without it! Good luck,

Dan

Will be praying for him tomorrow, Nina.

Lots of prayers to you and your brave little guy.

Dan

Poohbear,

I used Domperidone regularly when my motility was zero. It worked wonders for me and I had no side effects. No lactation either, thank goodness.

I had mine made for me at a local compounding pharmacy.

Good luck!

Dan

Ask your doctor about Propofol. I've had everything from endoscopies to cancer surgery and Propofol is the only anesthesia that left me with no after effects. It's extremely short-acting and is also something to consider if you're already taking benzodiazepine class meds (Xanax, Ativan) or other muscle relaxers. You'll do fine. Good luck!

Dan

I had the same problem and found Domperidone to work extremely well for me. Long term use of things like Reglan was not advised by my gastroenterologist. Domperidone is available in the states through any compounding pharmacy. I have one within a couple of miles of my home here in Richmond (Hi Lukkychrm42!) and I get it in liquid form as needed. Worked wonders for me in the past.

Hope you feel better soon.

South River Compounding Pharmacy Midlothian, Virginia

Keeping prayer and positive thoughts headed your way. I'm not just saying that. Know that I will be thinking of you and your stepfather today.

Sending prayers and good thoughts your way (as always - in case ya didn't know it!), Nina.

Dan

Awesome, Melissa! My daughter has been rowing for about 4 years now. Here's a link to a pic of her from the local paper about two years ago:

http://eye-q.com/natalie/

She loves the sport and will be heading off to Harvard this September and hopes to make a contribution on the crew team. I grew up watching the races on the Skukyll River in Philly when I visited relatives. Such a great sport.

I'm living through my daughter as well for now! Hope you feel better soon. You should be very proud.

Dan