Dysautonomia and Gastroparesis

Source: http://blog.brightlifedirect.com/wp-content/uploads/2016/09/dysautonomia-umbrella.jpg

I have noticed in my support groups that a lot more people are being diagnosed with POTS and Dysautonomia. I have been asked if it is related to Gastroparesis, since they were diagnosed with the others after the initial diagnosis of Gastroparesis. I wanted to write an article on POTS and Dysautonomia to not only help those newly diagnosed, but to explain the connection between the two and Gastroparesis. I especially wanted to write about Dysautonomia because October is Dysautonomia Awareness Month.

Source: http://i.pinimg.com/originals/79/6a/64/796a643254abfaed18b12779a5b90a1d.jpg



So, what is Dysautonomia?

According to the Cleveland Clinic (http://my.clevelandclinic.org/health/articles/dysautonomia ,

"What is Dysautonomia?

Dysautonomia refers to a disorder of autonomic nervous system (ANS) function that generally involves failure of the sympathetic or parasympathetic components of the ANS, but dysautonomia involving excessive or overactive ANS actions also can occur. Dysautonomia can be local, as in reflex sympathetic dystrophy, or generalized, as in pure autonomic failure. It can be acute and reversible, as in Guillain-Barre syndrome, or chronic and progressive. Several common conditions such as diabetes and alcoholism can include dysautonomia. Dysautonomia also can occur as a primary condition or in association with degenerative neurological diseases such as Parkinson's disease. Other diseases with generalized, primary dysautonomia include multiple system atrophy and familial dysautonomia. Hallmarks of generalized dysautonomia due to sympathetic failure are impotence (in men) and a fall in blood pressure during standing (orthostatic hypotension). Excessive sympathetic activity can present as hypertension or a rapid pulse rate.



Is there any treatment?

There is usually no cure for dysautonomia. Secondary forms may improve with treatment of the underlying disease. In many cases treatment of primary dysautonomia is symptomatic and supportive. Measures to combat orthostatic hypotension include elevation of the head of the bed, water bolus (rapid infusion of water given intravenously), a high-salt diet, and drugs such as fludrocortisone and midodrine.




What is the prognosis?

The outlook for individuals with dysautonomia depends on the particular diagnostic category. People with chronic, progressive, generalized dysautonomia in the setting of central nervous system degeneration have a generally poor long-term prognosis. Death can occur from pneumonia, acute respiratory failure, or sudden cardiopulmonary arrest.




What research is being done?

The NINDS supports and conducts research on dysautonomia. This research aims to discover ways to diagnose, treat, and, ultimately, prevent these disorders.




Organizations

National Dysautonomia Research Foundation

P.O. Box 301
Red Wing, MN 55066-0301
ndrf@ndrf.org
www.ndrf.org
Tel: 651-327-0367
Fax: 651-267-0524

National Organization for Rare Disorders (NORD)

55 Kenosia Avenue
Danbury, CT 06810
orphan@rarediseases.org
www.rarediseases.org
Tel: 203-744-0100; Voice Mail: 800-999-NORD (6673)
Fax: 203-798-2291

Dysautonomia Foundation

315 W. 39th Street
Suite 701
New York, NY 10018
info@familialdysautonomia.org
www.familialdysautonomia.org
Tel: 212-279-1066
Fax: 212-279-2066

Familial Dysautonomia Hope Foundation, Inc. (FD Hope)

121 South Estes Drive
Suite 205-D
Chapel Hill, NC 27514-2868
info@fdhope.org
www.fdhope.org
Tel: 919-969-1414

The Multiple System Atrophy Coalition

9935-D Rea Road
Charlotte, NC 28227
vjames@msacoalition.org
www.multiple-system-atrophy.org
Tel: 866-737-5999

Dysautonomia Youth Network of America, Inc.

1301 Greengate Court
Waldorf, MD 20601
info@dynainc.org
www.dynainc.org
Tel: 301-705-6995
Fax: 301-638-DYNA

Source: National Institutes of Health; National Institute of Neurological Disorders and Stroke NINDS

This information is provided by the Cleveland Clinic and is not intended to replace the medical advice of your doctor or health care provider. Please consult your health care provider for advice about a specific medical condition. This document was last reviewed on: 8/11/2015...#6004"

Source: http://7468669c0013a7dae459-4d0fcf8d315d40f305ee2ebb6c32f79c.ssl.cf1.rackcdn.com/6071847_1445348729.4079_updates.jpg

Source: http://image.slidesharecdn.com/dysautonomia-100311124144-phpapp01/95/dysautonomia-6-728.jpg?cb=1268311395

Source: http://i.ytimg.com/vi/i-FtCGrXvTs/maxresdefault.jpg

Source: http://image.slidesharecdn.com/18dysautonomiaeps2016breakoutpresi-ii-160127175513/95/syncope-and-dysautonomia-4-638.jpg?cb=1453917438

Source: http://www.facebook.com/photo.php?fbid=10212997873295898&set=pcb.828771880581405&type=3&theater&ifg=1

Source: http://i.pinimg.com/736x/53/ec/4e/53ec4e9eb210e4519bf341f2da2accab--crps--days.jpg

My Visit with the Specialist

The Motility specialist visit was today. I told her all about my history of anxiety and how I vomit when I'm in pain. She told me that the gastric emptying test at the hospital might not have been accurate because they were giving me pain medication in the hospital which slows down digestion. So, she is going to give me something called a smart pill.

Here is the information on the smart pill

She says that it's good that my doctor put me on neurontin because that will help. If the smart pill confirms the gastroparesis, then she's going to try Nortriptyline. She says that a lot of her GP patients have had wonderful results with the medication. If I can't keep it down, I can sprinkle it on a teaspoon of applesauce and just swallow it.

Information on Nortriptyline


I hope the smart pill is covered by my insurance, but I'll have to check. If it's not, I'll have to do another gastric emptying test (which hurt tremendously last time) and a barium swallow to make sure that my colon is all right - no polyps,
Crohns, or worse.

The original thought that my regular GI doctor had was that the GP was a result of my gallbladder surgery but the specialist thinks it is the result of a virus. She told me to have hope, that the GP will go away if that's how it started.

I'm anxious about school and not sure what to do. I'm going to search around for an online class. She told me that I can't go to class puking, obviously. She's going to try her best to figure out what's wrong but also suggested that I see a neurologist since all of my problems seem to be nerve related. She also suggested that the neurologist check me for autoimmune diseases. I know that I've been tested for Lupus and that was negative. I may or may not have Celiac.

The specialist also suggested that the vomiting could be caused by abdominal migraines. I have never heard of such a thing.

Info about Abdominal Migraines here

I didn't even know that they existed! She has a lot of theories besides gastroparesis and she's going to check them all. She said that doesn't mean that I don't have gastroparesis but she wants to make sure.

I really liked her. My only complaint is that she talked too fast and wouldn't really listen to any of the questions I answered. She would tell me not to interrupt her. But, I guess she's busy and she can't spend all day answering my questions. Other than that, she was friendly and gave me a lot to think about.

The last resort, she suggested the electrical stimulator be placed in my stomach. But we're going to try the tests to confirm, the medicine to see if it works, and then go to the drastic surgery. I just don't want to to the gastric emptying test again or the test with the barium swallow. I'm not going to be able to keep the barium down.

Her nurse is going to check with the insurance and call me back about the smart pill. Keep your fingers crossed because that's the best test option I have. I hope it's covered. I could use some good news. I'll keep everyone posted.

I've lost close to 20 pounds since March because of the gastroparesis. I haven't been able to wear this shirt in two years. You can't really tell I've lost weight ... but I can. It's not the way I would have chosen to lose weight though. She said that I need to change my diet so I need to meet with a nutritionist - but I have to wait until after the tests. She said for me to eat less fiber and less fat. She said I could eat gluten that not eating gluten really didn't matter. I guess I should start eating it again and get another test done to see if I really do have Celiac Disease.

I just filled my pill caddy. The amount of pills I have to take is ridiculous.

More vomiting

Today was rough. I have been up for 24 hours straight now. I couldn't sleep last night because I kept vomiting and now I can't sleep tonight because of vomiting. I managed to have a semi productive day while working with my brothers to try and tackle Fraternity business.

While walking my friend out to her car, I vomited in the front yard and was assaulted by lady bugs. It's really unnerving to have a bug fly in your hair while you're vomiting and not being able to look and see what it is. Lady bugs are supposed to be good luck though, right?

I've been vomiting ever since. I haven't eaten anything today, other than dinner my brother brought over. So, there's not much to purge but I keep throwing up stomach acid. My stomach is swollen and painful. Also, I keep whacking my bad knee on the toilet when I'm sick.

I have a sharp, burning pain at the top of my stomach. It feels like the pins and needles nerve pain that I have in my knee plus burning. That's the best way I can describe it. I'm wondering if seeing a neurologist might be helpful? I have nerve damage in my knee and now my stomach. I'm scared that it might be a nerve related autoimmune disease or worse. I hope it's just coincidence.

I ate one small meal today. That was all I could eat. I would be happy if I could just turn a valve to cut my stomach off so that I could sleep. I haven't had a good night's rest in a while. I'm sitting upstairs watching TV so that I don't wake my husband up.

I just feel exhausted and miserable. There has to be something the doctor can do so that I can sleep. I really need rest but I can't lay on my sides like I normally do. My stomach pains intensify when I do that (I sleep in a fetal position). At least I have a bucket beside the bed in case I don't make it in time.

Please, let me make it in time. Please?