ellepee

I've been taking domperidone for awhile and it helps with my nausea, not so much the constipation- I take amitiza for that. I don't experience side effects and I take 20mg 3 times per day. I have heard from many others (including parents of kids who take it) that it helps them. -Elle

Hi, I weigh a little more than your son. I actually take 1200mg a day so it is quite pricey for me. I've been told by my doctor to take it in 2 doses, both before noon. I used to get it from the Puritan's Pride website, but now use Vitaline brand. (Vitaline and Epic4Health are apparently 2 bioenhanced and widely recommended brands) I'm taking it for mitochondrial disease but the majority of my symptoms are related to the autonomic nervous system. ~Elle

Julie, You are not alone with either of those symptoms. There are medications a neurologist can prescribe to help with the burning and you may want to go to a neuro-opthamologist to check out your eyes. Unfortunately I've been told there is nothing I can do about my vision but from the doctor's standpoint my eyes are healthy. ~Elle

Hi Amy, Sorry it took me so long to reply... Yes, I do have small-fiber neuropathy. It was dx from quantitative sensory testing and now it is monitored by my clinical visits. They have measured that it has only gotten slightly worse. With the medication I usually only get the burning/pain on hot nights. ~Elle

Hi, I had such awful burning sensations, mainly in my hands and feet. Although I still have it a little, Lyrica helps me a lot. ~Elle

Thanks Melissa and Angela for your replies!! I will be having it done next month. I have had endoscopies before and didn't know if there would be much difference with the botox injections. I don't believe I have gastroparesis as I had a normal gastric emptying study, but my antroduodenal manometry was abnormal with the contractions not lined up or something (the doctor went over the results with me but most of it went right over my head).....all I know is if it has the potential to make me feel better, even for a little bit, I will give it a shot. ~Elle

I'm going to be getting botox injections in my stomach due to some spontaneous contractions and simultaneous ones. I know there have been other posts on the topic but I'm having a difficult time finding information about the actual process. I know an endoscopy is involved but was wondering if those who have had it could shed some light on it for me... Is any anesthesia used and how long does it take? Thanks!! ~Elle

I actually just started taking it yesterday- I don't really have migraines but as my doctor is running out of options, I am trying it because of the unpredictability of my symptoms. I'm just on a low dose at the moment but will let you know if I have any adverse affects. ~Elle

I notice that on my "better" days when I'm able to do more during the day I get so sick at night. For instance last night while laying flat my blood pressure was 80/50 and my heart rate was 42. It's been lower and I seem to have nights like this a couple times per week when I just feel awful and can't sleep. Just wondering if anyone has any advice as to what is considered too low for blood pressure and heart rate? Thanks, Elle

I just came across this on a website: Hope it helps~ TENS stands for (Transcutaneous Electrical Nerve Stimulation). which are predominately used for nerve related pain conditions (acute and chronic conditions). It works by sending stimulating pulses across the surface of the skin and along the nerve strands. The stimulating pulses help prevent pain signals from reaching the brain. They also help stimulate your body to produce higher levels of its own natural painkillers, called "Endorphins". E.M.S. stands for (Electrical Muscle Stimulation) which are predominately used to prevent, or reduce, muscle atrophy. Atrophy is the weakening and loss of muscle tone, which is usually experienced after surgeries or injuries. EMS has been proven to be an effective means of preventing muscle atrophy. EMS also helps by increasing blood flow to muscles, increasing range of motion, increasing muscle strength, as well as enhancing muscle endurance. EMS has pain management attributes in helping muscle related pain, such as a spastic muscle, sore muscles, or tight muscles.

I tried Reglan with no success. For nausea I have been popping my orally disolving zofran like candy...but it would be nice to take something that would actually help the problem. It was funny, when the doctor said the name of the drug quickly...I thought he was prescibing me champagne (It had been a long day)- I was like can you say the name of the medication again. ~Elle

Thanks for the responses everyone! I will give it a try- my doctor got it for me through a compounding pharmacy. He mentioned the possibility of another manometry motility study in the future (this time to study the lower GI) but am so not ready to think about that yet as I'm still recovering from this one. It would be great if this med could help with some of my symptoms- then I can go back and try and figure out what may help the dizziness and the whole list of neorological issues...

I had an abnormal antroduodenal manometry motility study earlier this week. It showed some abnormalities of my GI track, most notably dysmotility of the stomach. (The study lasted 10 hours so by the time the doctor went over the results with me it had been a long day and I don't remember any of the technical terms for what I have) The first thing I'm going to try is the medication domperidone. It isn't FDA approved yet in the US but is used in Canada and throughout Europe with much success moving things through the stomach. Just wondering if any of you from other places use it or have had any experiences with it? I received mine today and am excited to give it a try as I'm hoping it will alleviate some of my nausea and vomiting...although not sure if it also helps constipation. ~Elle

Hi, I sympathize with your issues. My doctor is looking further into whether nerve damage could be causing my GI symptoms (constipation, nausea & vomiting) I'm actually have a specialized test to check for this in the morning - an antroduodenal manometry motility study. It doesn't sound like fun but it basically measures the pressure in the stomach for 4-6 hours under certain circumstances and can diagnose nerve damage. I suppose after tomorrow I will know more... ~Elle

I'm not sure when it's going to happen yet, but I'm going to have to have gastroduodenal manometry done. They told me the test will take about 6 hours...it doesn't sound like a fun one. ~Elle

Frustrated- I was 48.5% emptied after 1 hour. The entire test lasted about an hour and a half. I was so nauseaos during it and am puzzled now. I haven't talked to my doctor yet and I know they don't have the results about the relux part but my doc was almost positive that I have gastroparesis before this. Has anyone had a gastroduodenal manometry done? It doesn't sound fun but I think it may be what they have lined up next for me. ~Elle

Hi, I'm finally having a gastric emptying study done on Wednesday. My doctor thinks I have gastroparesis but have never confirmed this and I suffer from constant nausea. I've searched previous posts and see that most studies for everyone were either 2 or 4 hours. I was told mine would take an hour and a half. Has anyone else had one that quick? Thanks! ~Elle

Hi- I have also gotten to the point where I feel like I would give anything a try. People had been suggesting alternative methods to me for so long so as my western docs haven't been able to do much to help me I have given a couple of alternative techniques a try. People have been swearing by some of these eastern practices for thousands of years but be careful with what you try...I have heard many bizarre stories. I tried rolfing - a waste of money And I've been doing acupuncture for awhile. It seems to help with some of my symptoms for like a day or two and then they come back. ~Lisa

Melissa, so good to have you back!! ~Elle

Hi- I was diagnosed with a mitochondrial disease by a muslce biopsy. This is the only testing I had for it and I don't know too much about other testing, but I think before the muscle biopsy there are blood tests that can be done to check for elevated lactic acid levels or a special MRI with a spectroscopy. The United Mitochondrial Disease Foundation website that Melissa mentioned is great. It has tons of info for doctors on it too. Here is another good website: http://www.mitoaction.org/definition.html ~Elle

I've been having that feeling of fullness in my head recently. It's so uncomfortable. I also often feel pressure when I breath, like altitude sickness (and I live in Boston?) And several times per day I lose hearing breifly or it goes dull for a bit- this has been going on for a couple years. Keep me posted on what you find out about this stuff, ~Elle

I tried it for a few weeks awhile back. It does give you more energy but for me I still had all the nausea and dizziness so couldn't function while on it anyways. So all it did for me was keep me from sleeping. Fatigue has never been a major symptom for me, it's more my other symptoms that keep me from functioning but I supppose it could help you if you are very fatigued. Good luck! ~Elle

I don't take it for migraines, but I do remember having an increase in headaches for like the first 2 weeks I was on it but my doc told me to stay with it and I no longer have those headaches. For me it's one of the few drugs where I actually notice a benefit in taking it. I hope it helps you guys! ~Elle

I have been taking Lyrica for several months. I take it for the burning sensations I have in my hands and feet. I have noticed it working for that and recently my dose was increased. I don't get migraines very often but haven't had a bad one since I've been taking Lyrica....and I haven't experienced any side affects. Good luck if you decide to take it and let me know if it works for you.

A couple years ago I was sent to vestibular rehab to get my "rocks" in place again....I made no improvement. It seemed to just make me dizzier but I know some people who swear by those "canolith repositioning" methods that align your ear rocks. Good luck!!