The Vagus Nerve Stimulator

The Vagus Nerve Stimulator (VNS) is a medical treatment that involves delivering electrical impulses to the vagus nerve. The Vagus Nerve Stimulator, which is new to me so I wanted to do research on it, definitely would help a variety of conditions like epilepsy, depression, multiple sclerosis, headache, pain and Alzheimer's disease. It would probably even help with gastroparesis as well, though I'd check with your doctor first to be one hundred percent sure. Gastroparesis and DTP are caused by vagus nerve damage. If it sends electric impulses down your vagus nerve, it might help your stomach muscles contract and help with gastric emptying. There isn't enough research about Gastroparesis and the VNS so I cannot give you a definitive answer on whether it would help with Gastroparesis or not. However, I did research on the VNS itself, below, because I am not really familiar with it yet. I hope the research helps and I am going to mention this procedure to my GI to see if he would recommend it or if it can be used for Gastroparesis. It has been approved by the FDA for cluster headaches, which I found interesting reading the articles below.



If you are not familiar with the vagus nerve and how much it controls, please read my other article. The link is below:

http://www.emilysstomach.com/2016/07/information-about-vagus-nerve.html

Source: http://www.epilepsy.org.uk/sites/epilepsy/files/images/advice/vns_cyberonics.jpg



The Mayo Clinic describes the Vagus Nerve Stimulator (VNS) as:

"Vagus nerve stimulation is a procedure that involves implantation of a device that stimulates the vagus nerve with electrical impulses.

There's one vagus nerve on each side of your body, running from your brainstem through your neck to your chest and abdomen.

Vagus nerve stimulation is most often used to treat epilepsy when other treatments haven't worked. Vagus nerve stimulation is also a treatment for hard-to-treat depression that hasn't responded to typical therapies.

Researchers are currently studying vagus nerve stimulation as a potential treatment for a variety of conditions, including multiple sclerosis, headache, pain and Alzheimer's disease.

In conventional vagus nerve stimulation, a device is surgically implanted under the skin on your chest, and a wire is threaded under your skin connecting the device to the left vagus nerve. The right vagus nerve is not used because it carries fibers that supply nerves to the heart.

When activated, the device sends electrical signals along the vagus nerve to your brainstem, which then sends signals to certain areas in your brain.

New, noninvasive vagus nerve stimulation devices, which do not require surgical implantation, have been approved for use in Europe to treat epilepsy, depression and pain but have not yet been approved for use in the U.S. An implantable device that stimulates the right vagus nerve is also under study for the treatment of heart failure.




Before the procedure

Before surgery, your doctor will do a physical examination. You may need blood tests or other tests to make sure you don't have any health concerns that might be a problem.

Your doctor will have you start taking antibiotics before surgery to prevent infection.



During the procedure

Surgery to implant the vagus nerve stimulation device is done either on an outpatient basis, allowing you to go home that same day, or on an inpatient basis, requiring an overnight stay in the hospital.

The surgery usually takes one to two hours. You may remain awake but have medication to numb the surgery area (local anesthesia) or you may be unconscious during the surgery (general anesthesia).

The surgery itself doesn't involve your brain. Two small incisions are made, one on your chest and the other on the left side of the neck.

The pulse generator is implanted in the upper left side of your chest. The device is meant to be a permanent implant, but it can be removed if necessary.

The pulse generator is about the size of a stopwatch and runs on battery power. A lead wire is connected to the pulse generator. The lead wire is guided under your skin from your chest up to your neck, where it's attached to the left vagus nerve through the second incision.



After the procedure

The pulse generator is turned on during a visit to your doctor's office a few weeks after surgery. Then it can be programmed to deliver electrical impulses to the vagus nerve at various durations, frequencies and currents.

Vagus nerve stimulation usually starts at a low level and is gradually increased, depending on your symptoms and side effects.

Stimulation is programmed to turn on and off in specific cycles. You may have some tingling sensations or slight pain in your neck when the nerve stimulation is on.

Usually, the stimulations are set to occur every one to three minutes. Programming is performed at the physician's office using a hand-held programming device.

The stimulator doesn't detect seizure activity or depression symptoms. When it's turned on, the stimulator turns on and off at the intervals selected by your doctor.

You'll be given a hand-held magnet so that you can initiate a stimulation yourself if you or others sense the beginning of a seizure.

The magnet can also be used to temporarily turn off the vagus nerve stimulation, which may be necessary when you do certain activities such as public speaking, singing or exercising, or when you're eating if you have swallowing problems.

You must visit your doctor periodically to make sure that the pulse generator is working correctly and that it hasn't shifted out of position. Most people see their doctor once or twice a year for this purpose.

You should also contact your doctor before you have any medical tests, such as magnetic resonance imaging (MRI), which might interfere with your device, or have another medical device implanted.



Results

Vagus nerve stimulation isn't a cure for epilepsy. Most people with epilepsy won't stop having seizures or taking epilepsy medication altogether after the procedure.

But many will have fewer seizures, up to 20 to 50 percent fewer. Seizure intensity may lessen as well.

It can take as long as 18 months of vagus nerve stimulation before you notice any significant reduction in seizures. Vagus nerve stimulation may also shorten the recovery time after a seizure.

People who've had vagus nerve stimulation to treat epilepsy may also experience improvements in mood and quality of life.

Research is still mixed on the benefits of vagus nerve stimulation for the treatment of depression.

Some studies suggest the benefits of vagus nerve stimulation for depression accrue over time, and it may take several months of treatment before you notice any improvements in your depression symptoms.

In addition, vagus nerve stimulation doesn't work for everybody, and it generally isn't meant to replace traditional treatments.

Additionally, some health insurance carriers may not pay for this procedure.

Studies of vagus nerve stimulation as a treatment for conditions, such as Alzheimer's disease, migraine and multiple sclerosis, have been too small to draw any definitive conclusions about how well it may work for those problems. More research is needed."

Source: http://www.mayoclinic.org/tests-procedures/vagus-nerve-stimulation/home/ovc-20167755

In vagus nerve stimulation, an implanted pulse generator and lead wire stimulate the vagus nerve, which leads to stabilization of abnormal electrical activity in the brain.
Source: http://www.mayoclinic.org/tests-procedures/vagus-nerve-stimulation/multimedia/vagus-nerve-stimulation/img-20006852



According to Wikipedia, it has a lot of different medical uses such as,

"Because the vagus nerve is associated with many different functions and brain regions, research is being done to determine its usefulness in treating other illnesses, including various anxiety disorders, Alzheimer's disease, migraines, fibromyalgia, obesity, and tinnitus.

Alcohol addiction
Atrial fibrillation
Autism
Bulimia nervosa
Burn-induced organ dysfunction
Chronic heart failure
Chronic intractable hiccups
Comorbid personality disorders
Coronary artery disease
Dravet syndrome
Drop-attacks
Heatstroke
Heroin seeking behavior
Intestinal epithelial barrier breakdown
Lennox–Gastaut syndrome
Memory
Mood disorders in elderly population
Multiple sclerosis
Myocarditis
Obsessive compulsive disorder
Peripheral arterial occlusion disease
Postoperative cognitive dysfunction in elderly patients
Rasmussen's encephalitis
Severe mental diseases
Sepsis
Spinal trigeminal neuronal
Transient focal cerebral ischemia
Trauma-hemorrhagic shock
Traumatic brain injury
Vaginal-cervical self-stimulation in women with complete spinal cord injury
Vegetative states after traumatic brain injury
Visceral pain-related affective memory
Other brain stimulation techniques used to treat depression include electroconvulsive therapy (ECT) and cranial electrotherapy stimulation (CES). Deep brain stimulation is currently under study as a treatment for depression. Transcranial magnetic stimulation (TMS) is under study as a therapy for both depression and epilepsy. Trigeminal Nerve Stimulation (TNS) is being researched at UCLA as a treatment for epilepsy."

Unless you have a surgically implanted device you actually cannot directly stimulate your vagus nerve; however, you can indirectly stimulate your vagus nerve to relieve keyed up or shut down nervous system states. Remember, your vagus nerve passes through your belly, diaphragm, lungs, throat, inner ear, and facial muscles. Therefore, practices that change or control the actions of these areas of the body can influence the functioning of the vagus nerve through the mind-body feedback loop.


According to Dr. Arielle Schwartz, you can try these from the comfort of your living room:

"Humming: The vagus nerve passes through by the vocal cords and the inner ear and the vibrations of humming is a free and easy way to influence your nervous system states. Simply pick your favorite tune and you’re ready to go. Or if yoga fits your lifestyle you can “OM” your way to wellbeing. Notice and enjoy the sensations in your chest, throat, and head.

Conscious Breathing: The breath is one of the fastest ways to influence our nervous system states. The aim is to move the belly and diaphragm with the breath and to slow down your breathing. Vagus nerve stimulation occurs when the breath is slowed from our typical 10-14 breaths per minute to 5-7 breaths per minute. You can achieve this by counting the inhalation to 5, hold briefly, and exhale to a count of 10. You can further stimulate the vagus nerve by creating a slight constriction at the back of the throat and creating an “hhh”. Breathe like you are trying to fog a mirror to create the feeling in the throat but inhale and exhale out of the nose sound (in yoga this is called Ujjayi pranayam).

Valsalva Maneuver: This complicated name refers to a process of attempting to exhale against a closed airway. You can do this by keeping your mouth closed and pinching your nose while trying to breathe out. This increases the pressure inside of your chest cavity increasing vagal tone.

Diving Reflex: Considered a first rate vagus nerve stimulation technique, splashing cold water on your face from your lips to your scalp line stimulates the diving reflex. You can also achieve the nervous system cooling effects by placing ice cubes in a ziplock and holding the ice against your face and a brief hold of your breath. The diving reflex slows your heart rate, increases blood flow to your brain, reduces anger and relaxes your body. An additional technique that stimulates the diving reflex is to submerge your tongue in liquid. Drink and hold lukewarm water in your mouth sensing the water with your tongue.

Connection: Reach out for relationship. Healthy connections to others, whether this occurs in person, over the phone, or even via texts or social media in our modern world, can initiate regulation of our body and mind. Relationships can evoke the spirit of playfulness and creativity or can relax us into a trusting bond into another. Perhaps you engage in a lighthearted texting exchange with a friend. If you are in proximity with another you can try relationship expert, David Snarch’s simple, yet powerful exercise called 'hugging until relaxed.' The instructions are to simply 'stand on your own two feet, place your arms around your partner, focus on yourself, and to quiet yourself down, way down.'

Knowing practices for self-care are important. However, it is also important to know how and when to seek out professional therapeutic help. Asking for help can often be the hardest step. You do not need to walk the healing path alone."

Source: http://drarielleschwartz.com/natural-vagus-nerve-stimulation-dr-arielle-schwartz/#.WTxbvRPyvUo

Source: http://s-media-cache-ak0.pinimg.com/originals/fa/0b/55/fa0b55237c346fe50908d402f25b5d5a.jpg




The risks for the VNS, include side effects for the stimulator itself and surgical risks. According to the Mayo Clinic, they are,

"For most people, vagus nerve stimulation is safe. But it does have some risks, both from the surgery to implant the device and from the brain stimulation.


Surgery risks

Surgical complications with vagus nerve stimulation are rare and are similar to the dangers of having other types of surgery. They include:

Pain where the cut (incision) is made to implant the device
Infection
Incision scarring
Difficulty swallowing
Vocal cord paralysis, which is usually temporary, but can be permanent
Side effects after surgery

Some of the side effects and health problems associated with vagus nerve stimulation can include:

Voice changes
Hoarseness
Throat pain
Cough
Headache
Chest pain
Breathing problems, especially during exercise
Difficulty swallowing
Abdominal pain or nausea
Tingling or prickling of the skin
Insomnia
Slowing of the heart rate (bradycardia)
For most people, side effects are tolerable. They may lessen over time, but some side effects may be bothersome for as long as you use vagus nerve stimulation.

Adjusting the electrical impulses can help minimize these effects. If side effects are intolerable, the device can be shut off temporarily or permanently."

Source: http://www.mayoclinic.org/tests-procedures/vagus-nerve-stimulation/details/risks/cmc-20167760

Source: http://www.healthrising.org/wp-content/uploads/2015/05/Vagus-Nerve-Stimulation.jpg


EDIT September 28, 2017: A coma patient was comatose for fifteen years. Doctors placed a vagus stimulator in the coma patient and noticed that it increased the patient's brain activity. He woke up and can now communicate.

The article from The New York Post (http://nypost.com/2017/09/25/patient-in-coma-for-15-years-shows-signs-of-life-after-breakthrough/) says,

"A car crash victim left in a coma for 15 years has shown signs of life after a [vagus] nerve stimulator was implanted into his chest by neurosurgeons.

Doctors in France were able to stimulate nerves and have been able to challenge the long-held belief that disorders of consciousness that persist for longer than 12 months are irreversible.

Dr. Angela Sirigu of Institut des Sciences Cognitives Marc Jeannerod in Lyon said: 'By stimulating the vagus nerve, we show that it is possible to improve a patient’s presence in the world.'

The vagus nerve connects the brain to many other parts of the body, including the gut, and it is known to be important in waking up, alertness, and many other essential functions.


VNS stimulation was shown to revive consciousness in comatose patients.

Image Credit: http://nypost.com/2017/09/25/patient-in-coma-for-15-years-shows-signs-of-life-after-breakthrough/


To test the ability of vagus nerve stimulation (VNS) to restore consciousness, the researchers wanted to select a difficult case to ensure that any improvements couldn’t be explained by chance.

They looked at a patient who had been lying in a vegetative state for more than a decade with no sign of improvement.

The results, which were published in the journal Current Biology, show that after one month of VNS, the patient’s attention, movements and brain activity significantly improved.

PET scans show increased brain activity in comatose patients after VNS.

The patient began responding to simple orders that had been impossible before and was able to follow an object with his eyes and turn his head upon request.

The patient’s mother reported an improved ability to stay awake when listening to his therapist reading a book.

After stimulation, the researchers also observed responses to 'threat' that had been absent. For example, when an examiner’s head suddenly approached the patient’s face, he reacted with surprise by opening his eyes wide.

After many years in a vegetative state, he had entered a state of minimal consciousness.

Brain scans also showed major changes and improvements in movement, sensation, and awareness and also showed increased brain functional connectivity.

A positron emission tomography scan showed increases in metabolic activity in both cortical and subcortical regions of the brain.

The scientists say it shows that the right intervention can yield changes in consciousness even in the most severe clinical cases.

Sirigu said: 'Brain plasticity and brain repair are still possible even when hope seems to have vanished.'

The team now hopes the findings will also advance understanding of the capacity of our minds to produce conscious experience."

Ultrasound Today - Update on my Personal Struggle

I went to Emory for an ultrasound today at the bequest of my Doctor, for my liver. My liver enzymes have been quite high over the past two years now, and no one has discovered why. When I was first diagnosed with Gastroparesis, the theory was that it was because of stones in my liver. They went in and relaxed my sphincter that doles out bile from my liver, removing a "gravely type sludge," as my doctor put it, from where my gallbladder used to be. The Doctor at Emory told me that with Gastroparesis, there should be no pain. Every time a doctor tells me that, I want to laugh in their face and correct them. Tell them that if they had Gastroparesis, they'd feel differently. Everyone I've talked to that has been diagnosed, even with mild Gastroparesis, has dealt with some sort of pain.

So, a good friend and fraternity brother of mine, picked me up and took me to Emory. I was led into the room with the ultrasound machine. I laid down on the table and lifted up my shirt for the procedure. I was happy to say that there were butterflies painted on the ceiling tiles so that I actually had something to focus on. The lab tech started and pressed the probe down on such tender parts that had been giving me such pain. I bit my lip and squeezed my friend's hand because it hurt so much. I had an emesis bag, just in case I needed it.

I looked away because it hurt too much. My friend said the lab tech was making awful faces and she had a feeling that they found something wrong. Of course, the lab techs won't tell you anything - it's a liability factor. She had me turn to my side and looked at my kidneys as well. Then, we were done. The procedure probably took half an hour of thorough investigating with a very painful probe. Ultrasounds normally aren't painful, but I've been experiencing pain in my upper right side. I didn't start retching until we were in the car. Anytime a doctor or someone presses on my upper right side and my stomach - I vomit. Thankfully, it waited until I was home. I fell over on the toilet and vomited up what I tried to eat for lunch today - considering I haven't eaten in a while. I was thankful I had something to vomit up besides bile. I realize how bad that sounds but I've been throwing up nothing but bile for days, my throat welcomed some relief.

I've been coughing a lot because my throat is irritated from vomiting. The doctor will receive my ultrasound report in a few days and call me with the results. I'm nervous because my liver enzymes are high and I don't know what that means. I've never been so nervous. Will I have to have more surgery? Will someone take me seriously? I need some help. What I'm doing right now is not living - it's awful.

The only solace in the past few days have been my husband, who is a wonderful and caring man, and reading outside in the sunshine.

I am anxiously awaiting the results and to wonder where to go from here.

In the meantime, I've made an appointment with a psychologist because I am determined to prove to these doctors that the anxiety didn't get worse until after I had Gastroparesis. The doctor I saw before, not at Emory, at Mayo, told me that this was all in my head an all anxiety related. I want a doctor to evaluate that and tell me that it's not true. I just need someone to listen to me. I can't make up vomiting or pain like this. It's immobilizing. My friends and family see me suffer and I barely recognize my own reflection in the mirror because of my hallowed out, pale face, and the dark circles under my eyes. I think it will be good to have someone to speak with anyway, but I want someone to validate me and say that my GP is legitimate and that it's not caused by anxiety. That made me angry more than anything when the Mayo doctor told me that. I think he only did so because he correctly assumed that I'd be a complicated case, and he didn't want to deal with me personally.

I'm keeping track of my symptoms in a written journal, along with how I feel. A GP friend of mine told me about an app available called MySymptom Tracker. It's $3 in the Google Play store but worth it. So, I track my vomiting, medications, mood, etc on my phone as well. You can download it and bring it in with you to your doctor, which I find useful. I document everything. It's a good habit to have.

I feel like I'm preparing for battle. I'm going to fight to be healthy again.

Relaxation & Breathing Techniques from Mayo in Jacksonville

I know that this is a repost for me but I have better copies of the documents that you can actually read, now that I've scanned them in. The doctor told me that all of my issues stem from anxiety but I believe he's wrong. My anxiety didn't get worse until my stomach issues became worse. However, if you have issues sleeping or if you are having a panic attack, this will help. I've had to deep breathe out of panic attacks and talk myself out of it, especially in the car. I hope this will help you. Again, this was handed to me by Mayo but I wanted to save others thousands of dollars to be handed these pieces of paper.

If you click on the images, they'll open in PDF format so that you can read it better.

I apologize about the spill on the last two pages. I managed to spill soda on it while reading the sheets in the car when my husband jerked the wheel.

Relaxation Techniques from Mayo

I was told to learn Relaxation Techniques from Mayo, so I'm going to share them with you. If you cannot read the text that I've uploaded, I will be glad to type up everything for you tomorrow!


Let's start with Diaphragmatic Breathing (if you've done Yoga, you've used this method).































Introduction to Relaxation Skills

pH Probe Test Results - Mayo Visit Day 2

I met with the doctor today at Mayo to find out the results of my pH probe test. The doctor told me that during my twenty-four hour test, the stomach acid was present 95% of the time. That means that my acid reflux is making the vomiting worse because the medication they put me on for it (Aciphex twice daily) isn't working. During fifty-six recorded episodes during the test, forty-four of them showed vomit and not acid. That just floored me. I had THAT much food and acid come up during twenty-four hours! That was just a lot to take in.

He explained that no surgeon would do the nissen fludoplication surgery that he was considering before because of the vomiting. Additionally, my vomiting would cause the surgery to become undone, which would be pointless.

The acid needs to be reduced to at least 25%. The doctor wants me to try breathing exercises and relaxation techniques the psychologist gave me because he doesn't want me on a lot of medications.

The psychologist I consulted with this morning thinks that if I can reduce my anxiety then that will help control the vomiting. The problem is that I have anxiety BECAUSE of the stomach issues. The psychologist also wants me to try walking thirty minutes a day. The issue I have with that, that I explained to him, was that it's a catch-22 for me. I have issues leaving my bathroom long enough to do anything or I'd go hiking! So, my solution that I came up with, is to drag one of the Wii's that we own downstairs, hook it up to my TV, and do yoga on the Wii Fit so that I can exercise for thirty minutes a day. He also printed out a list of psychologists for me to see in Atlanta that I should follow up with.

Meanwhile, the GI doctor wants to see if I receive any relief from the alternative methods - deep breathing and relaxation. He put me on Protonix 40mg, twice daily, to protect my esophagus.

He told me to follow up with my doctor in Atlanta to do a chronic liver disease test and a pelvic floor test. I will wait for his notes before I make an appointment with my regular GI doctor. I'm not quite sure what to do about the GERD. I've been on every medication known to man for the acid reflux. What do I do if none of them work?

I'm going to scan in the relaxation techniques and will attach them to this post for later. I wanted to write out what the doctor told me before I forgot. =)

pH Probe Test - Mayo Visit Day 1

Well, I went to Mayo this morning and had the pH probe test done. I sat down and the nurse explained the test to me. The probe will test my vomit for bile, stomach acid, regurgitation, etc. This test will help the doctor determine how best to treat me. She had me sit facing her while she inserted the small catheter into my nose, down my throat, and into my stomach. She didn't use any numbing agents or anything before she put the catheter in. My eyes watered like crazy and she gave me water to sip on while she was inserting the catheter, to make it easier for me not to gag.

Once the catheter was in, the nurse secured it with tape. However, I do not believe it's secured that well because the tube tends to move in and out of my nose with every bump in the car, swallow, or movement. It's going to take some getting used to.



Illustration of where the pH Probe goes.


The nurse told me that I needed to take in three meals to ensure an accurate test. I'm not able to eat that much on the best of days, so this is going to be a real challenge for me.

She gave me a receiver that I have to wear, much like the Bravo Test that I had before. The receiver has three buttons that I need to press when I take my Aciphex, if I have heartburn, and if I experience regurgitation. I have to press another button when I eat and when I finish eating as well as when I lay down or up and about. The catheter is attached to this receiver, so I can't leave it on the bed or anything. I MUST carry it with me.



The receiver I have to carry with me.


So, I will wear the pH probe until tomorrow morning. I've got to eat in the morning, which will be difficult because that's when I'm the most sick. The nurse said she'd take it out before I see the doctor in the morning for the results.

My nose is really irritated and I keep sneezing. The tube keeps gagging me but other than that, it's not to bad. I prefer the Bravo Test though.



My pH probe!

Mayo Clinic - Day Five. Follow up Visit with the Doctor

I met with the doctor today at Mayo to go over all of my test results from this week of testing.

We started off talking about my lab work. My labs were normal, except for my enzymes. The number was 108 and normal is around 40. That kind of bothers me because my liver enzymes were also really high in the hospital, in the 440s to 500s. He is going to recheck my labs in three months to rule out chronic liver disease, which sounds a bit scary. My white blood cell count was up, at 12.8. I don't have any explanation for that except for the throat infection I vomited myself into last week.

My 48 hour BRAVO TEST was positive. The test came back showing three different occasions for heartburn. The regurgitation I had did not correspond with reflux events on the Bravo meter device.

I want to address the heartburn thing. I know what heartburn feels like and I swear that I did NOT feel the heartburn while doing the Bravo test. I have been vomiting up stomach acid, but I thought that was because there was nothing left on my stomach. Am I just so used to the acid reflux that I can't tell when it's occurring now?

My esophagus looked normal and there wasn't any damage. I'm not sure how that happened because it was so swollen and sore last week. I still have issues swallowing and I have the bravo capsule attached to my esophagus until it falls off.

I have to manage this like GERD. I've tried Protonix, Pepcid, Prevacid, Prilosec, and Dexilant in the past to control acid reflux. So, the doctor called in some ACIPHEX to help control my symptoms. He told me to try this for three months. He also told me to learn DIAPHRAGMATIC DEEP BREATHING. Dr. Bouras said that will help me to help control the vomiting. I have to come back to the Mayo Clinic to meet with behavioral specialists to learn how to this technique but it will have to be approved by my insurance before I can schedule the appointment. But, the deep breathing will help me hold the food down.

If the medication does NOT work, then he will have to do surgery. He recommended a NISSEN FUNDOPLICATION.

The doctor also cleared me to start back on BENTYL. This is great news because my stomach spasms hurt SO much! This will help them subside. He did caution me to be careful about these types of medication because they can make gastric emptying even slower.

If I'm still having issues three months from now on the new PPI and with the deep breathing, he also mentioned doing a Sleuth Study which is a reflux study that isn't just about acid, but any kind of reflux. I'm sorry that I don't have a link for you but I can't find anything on the Internet about it. He also mentioned the Nissen, as I mentioned before. That would make it impossible for me to vomit and could create issues for me swallowing.

I also have severe constipation. Nothing goes down and everything comes back up so he suggested Milk of Magnesium at night. I've been doing that but I guess I'll up the dosage. He said that in some cases, severe constipation can lead to upper GI motility issues. I'm to take 2 - 4 tablespoons of Magnesium at bedtime and avoid any medications that could cause constipation.

He may eventually do rectal testing on me. Man, that sounds like fun! Kidding. Anyway, he said that even though your colon could be normal (mine was via a colonoscopy) that you can still have rectal issues. There are tests to see if the muscles are functioning properly and he would also check for any possible blockages. He also mentioned doing another test called the PELVIC FLOOR TEST. I had never heard of such a thing. It's a group of muscles that control your bladder and bowel movements and this test makes sure that group of muscles work properly.

I asked him if there was anything else I could take for the nausea because the Zofran is hit or miss and Phenergan, well, doesn't last that long. I think I'm building up a tolerance. he said that I could take SCOPOLAMINE patches, which you put behind your ear and wear for three days but they have the potential to make you sleepy. So, I'll ask my doctor about those when I get home. I am going to straight up ask for pain patches too until the spasms are under control.

So, I still have motility issues. I'm meeting with a new PCP this week as well so that I can actually get more refills on Phenergan (more than 2 refills at a time), ask about the patch, and talk to him about everything that's been going on. I know he can't help with GP or motility issues, but he can help me with the stress and coping with such things. I had been seeing another doctor as my PCP but he's been at the practice less and less, having his PA's cover it instead and some of them really aren't that bright. If I am paying for a visit and I haven't slept in three days because of vomiting - don't turn me away with a prescription for 12 phenergan tablets and a pat on the head. That was the last straw for me, I think. I'm in the process of getting ALL of my medical records together for the new doctor. He might be a bit overwhelmed. My file looks like 100 Stephen King novels packed into one.

TRDL; my liver enzymes are high and need to be tested in three months to rule out chronic liver disease. Severe acid reflux is causing me to keep vomiting everything up. The doctor gave me medicine and if it doesn't work, along with deep breathing, I will need to have a stomach operation wherein, basically, they wrap my stomach around itself as well as other testing.

Mayo Clinic - Day Four. Bravo Test

Today was day two of my Bravo pH test. I have to keep a log of all of my pain, nausea, vomiting, food intake, etc. It is very similar to the Smart Pill test that I had earlier last year. When they went in for my endoscope yesterday, the doctor attached a small capsule to my esophagus. This capsule measures the acid and reflux that my body produces to determine whether or not I really do have acid reflux. When the capsule is finished after three days, it falls off.

This is the Bravo pH log that they gave me to keep track of everything:

This is the receiver that they gave me. I have to wear it for the next two days:

The test is a bit miserable because I can only drink water in between meals. I can't sip it, I have to actually drink it at once. I can only have pedalyte, soda, and other things like that to drink with my meals. I have to eat normally, like I would if I didn't have Gastroparesis which is a bit hard for me. I am scared I am going to vomit and vomit this capsule loose. If that happens, I have to call the doctor at Mayo and let him know.

I go back to consult with Dr. Bouras before I leave tomorrow. I'm a bit nervous as to what he'll have to say. I was kind of hoping they would hospitalize me to give me fluids because I'm still very dehydrated and sick. I guess I'll wait and see what he says and waiting is always the hardest part.

First Visit at the Mayo Clinic at Jacksonville

I have to say that the Mayo Clinic is very efficient. I went and registered at the registration desk and then was called back by a nurse. She input my information into the computer and put in all of my medical history. Then, she sent me upstairs to the floor where the doctor was and they asked me more questions and gave me more forms. I was able to get back to the doctor's room quite quickly.

As a side note, I need to make sure to get my other records sent there. I've had problems with nausea and vomiting since I was a teenager.

The doctor wasn't happy about my GI doctor's medications that he put me on but did commend my doctor for sending me to the Mayo Clinic. He told me that Bentyl and Levsin are basically the same things and they can cause paralysis of the stomach. I was also told to stop Nortriptyline, Dexilant, and Zoloft. The Doctor said that he wanted to see how my stomach reacted without all of the drugs masking symptoms and that the drugs could be making the nausea/vomiting worse. He told me that 30% of people that take Zoloft have nausea and vomiting.

He wanted me all of all of these medications before I take any tests. He doesn't want the medications to skew the results. So, I have to go back down to Jacksonville the first week of February.

He also said that me not being able to keep down water was very strange and not a symptom of GP. He mentioned this many times.

The doctor said that if the gastroparesis was caused by a virus in March, then the good news is that it is temporary - the stomach will heal itself in a year or two.

The tests that I will be doing the first week of February at Mayo are:

Gastric Emptying Test - to retake again because he said that they shouldn't have taken it the first time around while I was hospitalized and on pain medication. I will have this test done for four hours and I'm nervous because I had such a hard time keeping the radioactive sandwich down the first time. I remember crying because I was in so much pain from the test. Going from eating nothing to eating an entire sandwich is rough.

Endoscopic Ultrasound (they can't do an MRI with my spinal cord stimulator) - they want to go in to see if there are any stones or anything in my liver that could be causing my upper right pain. They are also going to stretch out my esophagus if they feel it's too constricted while they're in there. The doctor wants to take a look at my biliary system.

Bravo pH Test - this will test for acid reflux to see if that's contributing to my problems.

Blood tests - he's going to check my liver enzymes, since they've been elevated lately. He wants to know why. He's also testing my TSH (thyroid), Cortisol levels, and doing a complete panel.

The doctor has low confidence in my GP diagnosis and GERD. He thinks that if I do have gastroparesis that something else is going on because I shouldn't be this ill. This doctor helped to make the first gastric pacemaker, so I'm in good hands. He was also wearing a bow tie and I was wearing a Doctor Who shirt, with a TARDIS on it.

I have a test on each day starting February 4th. I'm going to be extremely tired but at least they're going to do it out patient. I'm hoping that I can get some answers. I really want to feel better and not carry a bucket or bags when I go anywhere.

My Appt with the Mayo Clinic in Florida & Updates

It's been a few days so I'll catch you up on what's been going on.

The Nature Sleeping Aid actually worked for me and helped me sleep. The preggie pops and tummy drops are also helping to curb the nausea along with my medication. I'm still vomiting, but it's not as bad as it could be. The Quease Ease is amazing. It really does help when I inhale it. I've gotten some wonderful advice from the Gastroparesis Facebook group at: www.facebook.com/greensnoteasy.

I have a severe headache right now that I'm pretty sure is from dehydration. The headache is located at the top right part of my head above my forehead. It just aches. I drank an entire bottle of grape juice over the course of the past few days and I'm working on apple juice right now. I'm not sure if it's going to stay down. I even tried a little bit of caffeine to make sure that it wasn't caffeine related. Nothing is helping. I don't think it's a side effect of my medication but I guess the doctors at Mayo will know more and what to do about it when I get down there.

My doctor finally faxed my records down to the Mayo Clinic in Florida and they were able to fit me in on Monday because of a cancellation. My husband and I are driving down there tomorrow. We reserved a hotel room but I don't know if they are going to hospitalize me or not.

I wasn't able to sleep 1/8 - 1/9/13. I was up for two days straight because of stomach spasms and running to the bathroom. I also managed to pull a muscle in my abdomen while I was vomiting. It almost feels like I have a charlie horse in my side. The pain in my upper right side is still there, by my liver. I've had this pain on and off since March. The ERCP helped for a while, but it's back with a vengeance now. The surgical incision in my back that is still healing from the spinal cord stimulator is also really sore because I've been bending over my bucket and the toilet to get sick.

I've just been incredibly tired and weak. It takes everything I have to make it to the bathroom. I can't even take a shower by myself at this point because it takes too much energy to stand up. I've been a bit lonely too. I've noticed my patience has been pretty much non existent because I keep vomiting, having muscles spasms in my stomach, and not enough rest.

I haven't been the least bit hungry so I haven't been eating a whole lot. I have kept a daily planner for the past month detailing the times that I get sick, what I eat and when, and when the spasms start. I'm giving it to my doctor on Monday at my appointment. I've also been keeping a detailed journal and I've been using River Song's TARDIS journal to do so.

My stomach is incredibly swollen and everything I've tried to eat has either come back up or it's just sitting in my stomach. Nothing is moving downwards. It almost looks like I'm pregnant and it's pretty painful. The cats can't even touch my stomach without me yowling. I managed to sleep through my husband's birthday dinner because I felt so lousy. When I woke up to realize they went without me, it made me feel even worse.

I just ate some yogurt and I'm waiting for the stomach spasms to start. It usually starts about twenty minutes after I eat something. I also have a problem that's relatively new - when I take my pills or try to eat something, it feels like it gets stuck in my esophagus. I have to drink a lot to get it unstuck to go down into my stomach. I wonder if it's because my esophagus is swollen or damaged from all of the burning stomach acid I've vomited up. I'll have to remember to ask the doctor about that. I know a while ago, I had my esophagus stretched out by a GI doctor to make it wider so this problem wouldn't happen again, but that was years ago.

Oh, and I listed my medications out so that I would remember to tell the doctor what all I'm taking. I'm taking TWELVE different medications and most of them are for my stomach. It's hard though, because the pills don't always stay down. I have really bad anxiety but the medication usually comes back up so lately I've been having panic attacks. I haven't had those in quite a while.

I am really proud to say that the Gastroparesis page on Facebook that I help to admin is the third largest GP page on Facebook. That makes me really proud to be a part of it.