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Please Help-Docs have No Idea What is Wrong


LillyGray
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Hello All,

I am a 34 year old female that has had issues since I started kindergarten.  When I started school and had to wake up early, I would have sweating, shaking, horrible nausea, and stomach pain that lasted until I threw up.  Immediately after vomiting, I would feel instant relief.  I got smart and would go to school, know I needed to throw up to feel better so I would, then the teacher would send me home.  As soon as my mom came to pick me up, I would be fine.  She took me to my pediatrician and they ordered a barium swallow, which came back normal.  They said "she just doesn't do mornings well."  Whenever we would leave for family vacation early, you could set your watch that I would be sick.  Once I was older, I noticed other things set this off.  One day I was at a gym class with some friends, and while doing easy exercises, I got that hot feeling and ran to the bathroom.  I started feeling my skin burn with heat, and I had to take off my clothes and lay on the cold bathroom floor.  I felt weak as water and threw up everything in my stomach.  I also have the urge to go to the bathroom.  Once I felt strong enough to stand up, I looked in the mirror and was as pale as a piece of cotton.  It also happened one night at night class in college.  I started hearing a buzzing sound in my ear and felt the wave of nausea hit, I ran to the bathroom and again had to take off my clothes and cling to the toilet wishing I could throw up.  For the first and only time, I had tunnel vision and felt like I was going to black out.  I've never experienced that symptom before or since.  Please note I was at a good weight and tried to be active, however after the gym scare, I was afraid of exercising.  I ended up going to a GI doc and he sent me for a stomach emptying test.  It came back showing gastroparesis.  I also mentioned my blood sugar seemed to get low quite often and I'd feel jittery.  He quickly sent me to an endocrinologist and said it sounded like a diabetes issue.  The endocrinologist put me in the hospital with a picc line and made me go 3 days with no food, only hospital water to measure my sugar.  It went to 60 and averaged out.  He said I needed to eat small meals throughout the day, no sugar, etc.  He basically dismissed it at that, and he ended up moving away and we had no other endocrinologist where I live.  Please note, at age 18 I started seeing a reproductive endocrinologist for polycystic ovarian syndrome, and that too can cause insulin resistance and wreak havoc on your body.  During one set of labs, my cortisol level came back very low.  The RE started me on cortef but I didn't see any change in the nausea/shaking/morning issues.  He checked it several times after that and it was in normal range, even when off the cortef, so that kind of ended that trail.  Fast forward to now, and I have 2 small beautiful children who are very active.  I have noticed what once was a morning ordeal is now starting to happen throughout the day.  I had back surgery for herniated disc and compressed nerve this past Thursday, and yesterday I woke up hot, shaking, pale, and had a hard time with vomiting and diarrhea.  My mom was hear and witnessed it firsthand and called my family doctor.  After throwing up,  I as always felt better.  Even before surgery I missed 2 days in 2 weeks of work because of this.  No doctor seems to have the right answers and they end up passing me from one doc to the next, and I always end up falling threw the cracks.  I have no idea if this is damaging my body or not.  I don't know what my blood pressure or heart rate is when an episode occurs, because by the time I get to the doctor it's passed.  Any and all advice/suggestions is appreciated!

 

 

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You can look at the DINET physician list on the main page. If you have dysautonomia, you would have an abnormal increase in heart rate or an abnormal decrease in blood pressure when standing, not just during your episodes. It might save time if you figure this out at home out before contacting a doctor. 

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Did they put you on Domperidone for the gastroparesis? Was it the endocrinologist that diagnosed adrenal insufficiency? How did they rule out Addison's disease? Did they explain the cause of your gastroparesis? That doesn't generally happen in a vacuum. 

I went through and am still going through some of this. I don't do mornings either. I mean, I can get up and try, but you will spend the rest of the day dealing with me and my issues if you try to make me get up and go too early. It will usually involve me on the ground in and out of consciousness. What time of day were your normal cortisol tests vs the abnormal ones? 

Domperidone helped the gastroparesis tremendously. The diagnosis on the other part is evolving. They ruled out Addison's because my cortisol gets to normal levels by the end of the day, but in the morning it is very low. They think it is part of dysautonomia and with everything else, they called it Pure Autonomic Failure, but now that I have developed other symptoms, they are reevaluating. 

Have you tried a neurologist that specializes in dysautonomia? 

Hang in there. I have been doing this for decades too. 

Kim 

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Hi Lilly,

I am sorry you are having so many issues going on. Its never fun when our bodies rebel against us! There are different doctors who treat dysautonomia but from the sounds of what you are experiencing you may want to see a neurologist and an endocrinologist. I found that learning about my disease and diseases in general which could be causing symptoms helped me learn about and eliminate other things when i didn't know what i had via online research. Also, when these events happen, keep a journal with dates and times of what you are feeling and try to describe it the best you can--talk about what it is you are feeling. When these episodes happen, use a thermometer to take your temperature, and check your pulse--count it for 60 seconds and that is your heart rate. Record that data in your journal. Normal resting heart rates can range from 55-80 beats per minute depending on your fitness level. You can also buy a blood pressure cuff online if you would like and record those values during episodes as well.  When these episodes happen try taking your heartrate and/or blood pressure  with changes in position: lay down for a couple of minutes, then take your pulse for 60 seconds and record it. Then stand up and take your pulse. If the pulse raises past 30 beats per minute and stays there or if your blood pressure drops by 30 mmhg that can be a tell tale sign of dysautonomia that you should inform your doctor about. If they are normal thats a good thing, one less thing that could possibly be wrong. As for your symptoms, it sometimes helps to understand how the body works to understand what may be causing your problems. From what i read it sounds like your chief complaints are nausea/confirmed gastroparesis, episodes of hot burning skin sensations, weakness, buzzing sensations in your ears, low blood sugar, dizziness, pcos, at least one confirmed indcident of low cortisol, and sometimes diarrhea. When you go to a doctor, that is the list of symptoms you should present them with. So, as far as understanding your body mechanisms i will go through them one at a time. Nausea is very non specific, there are a lot of things that can cause it. In fact having a low am cortisol level can cause nausea. Having gastroparesis could probably cause it as well. If they have looked at your gi tract and not found anything other than gastroparesis its possible that what you are experiencing is not originating from your gi tract. On that same note however, a full workup of the gi tract would include much more than just a barium test. It could include a colonoscopy, checking your pancreas both through imaging and also its enzymes, checking fecal occult for blood, checking for intestinal parisites, checking your liver enzymes, checking for gluten sensitivity, and also checking for lactose intolerance--these tests can help to eliminate the gi tract as a primary cause for your symptoms and in my opinion, its important that you do that to rule out a gi origin. It is possible that all these things you are experiencing are related and its also possible that you are experiencing different symptoms from different and separate causes. Once the gi tract has been ruled out you can begin to look other places. If the gi tract is not the cause of nausea, it could be your cortisol levels, your thyroid levels (tsh, p3, p4), other hormones, a brain abnormality, dysautonomia, a tumor somewhere its not supposed to be, anorexia/bulemia, anxiety, heart abnormalities, seizures, a viral or bacterial infection, drug withdrawl, and/or a variety of other things. This is why it is so hard to find a specific cause for nausea--it can come from many different places. As far as treating nausea itself, the drug zofram works wonders in my experience.

The hot burning skin sensations can be caused by a few things. The first is neuropathy. This is when the nerves in our bodies become damaged either by an autoimmune process(ehlers danlos syndrome, marphan syndrome, lymes disease etc) injury, or poisons such as sugar (diabetes), alcoholism, heavy metal(such as lead), or other toxins. That damage to the nerves can cause a burning and hot feeling and if the nerves to the gi tract are damaged, can also cause gastroparesis. Neuropathy is diagnosed by a neurologist. They do what is called a QSART test and also a nerve conduction test. These tests detect abnormalities in the nerves themselves.  

If the burning and hot sensation is not caused by a nerve abnormality, it could be caused by your blood vessels overdilating. When the blood vessels dilate they open up. This causes a release of heat and water molecules leak from the blood vessels into the skin causing us to sweat. So if we are sweating--they are dilated. Things that can cause this are blood vessel abnormalities, hormones--especially adrenaline, dysautonomia, pots, anxiety, and also neuropathy. 

When we we experience fear(whether real or imagined) or have a death threat to our bodies either from an external source (car accident, lion chasing you, etc) or an internal source that prevents glucose and oxygen from reaching our brains ( heart attack/problem, bleeding to death, low blood pressure, low heartrate, low blood sugar, starvation, lung collapse etc) it causes our bodies to release adrenaline to try and survive in those situations. Adrenaline changes how our blood vessels are dilated and also how forcefully our heart beats--the beats become stronger. It causes massive amounts of glucose to be released to the muscles(so that we can run away from the lion or lift something heavy that may have fallen on us) and this causes the muscles to shake. It also increases how quickly we breathe to deliver more oxygen to the brain making us hyperventilate. It can also make us very nauseous which is why some people throw up after a stressful incident. Your incident in the bathroom could have been caused by adrenaline release. These can definitely be caused by dysautonomia, but could also be caused by anxiety(through the vagus nerve), or many other things. I know adrenaline rushes can be very scary, especially when you dont know why they are happening and it feels awful--but just remember, your body is doing exactly what its supposed to do to help you survive--thanks body!! 

The buzzing sensation in your ears could be caused by a problem with your ear, or it could be a sign of a seizure, nerve damage, an anomoly, heavy metal posioning, malnutrition, or dysautonomia. I have POTS and my ears ring and the sound goes in and out quite often. I have also read about a lot of people with dysautonomia who do get buzzing but I have never experienced it first hand. Neurologists test for seizures by doing what is called an EEG and that may be a test you consider doing as well. 

As far as the hormonal imbalances go, those levels are regulated in various parts of the body. They begin in the brain in the hypothalamus which is also a major player in adrenaline responses. The hypothalamus oversees all of the hormonal and autonomic responses for the body and is located in the back of the head by the brain stem just above where your head meets your neck. From there, they hit the pituitary gland which is next to the hypothalamus in the brain. From the pituitary gland those hormones can go many different places such as the adrenal glands on top of the kidneys--to release adrenaline--, the thryoid which is in your neck, and various other places. Since you are having so many weird symptoms and hormonal imbalances a brain mri may not be a bad idea to make sure those things are in good working order and that you dont have a tumor, congenital(birth) defect, or something called a chiari malformation. This is where the brainstem gets compressed due to a birth defect and can cause all sorts of autonomic and hormonal problems. 

At the end of the day, there could be many things that are causing your issues and for me, i had all of those things checked. If i were experiencing those things, based on what I know, my guesses would be hormonal problems, neuropathy, autoimmune disease, seizure, anxiety, chiari malformation, or dysautonomia. I hope that helps and that you are able to find some relief. Sending lots of positive vibes!

 

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Dysautonomia isn't always about your heart rate or pulse. It can be body temperature, sweating, GI issues. Anything the autonomic nervous system controls, pretty much anything that happens automatically within our bodies. It all traces back to the brain though. Do some checking on the vagus nerve and how to strengthen it. Strengthening the vagus nerve has improved my GI symptoms greatly. Simple things like gargling water several times a day, gagging yourself and humming loudly all give your vagus nerve a work out. I would highly recommend Dr Ks book "Why isn't my brain working?" You'll probably find yourself in the pages and he offers excellent practical solutions. I ended up finding a local doctor who prescribed to the same understanding and started brain based therapy that has been life transforming!  Hang in there and know you're not alone!! 

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I don't know anything about your location, insurance etc.  If you have a GP that could get all you symptoms and some records together ,a place like the Mayo Clinic or Cleveland Clinic, might be a good idea. You are usually seen by one doctor that would set things up in other areas if it was deemed necessary. It can take several days but it is usually well coordinated and they try to accommodate those that have traveled a distance to be there. 

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