Could My Dysautonomia Be Caused By Being Underweight?

[Jordan5815]

I forget the source but for my height, gender and body frame my weight should be 145 that would be the low end. I currently weigh 122. I always notice when I start getting really sick I am a lower weight then when I am in the low 130's. When I have 130+ weight I have milder symptoms. my BMI is 16.5 I'm 6 ft with a medium frame.

I'm gonna bring up something a little controversial but it is true. I believe I am annorexic not to be mistaken for (Annorexia Nervosa) which is a (psychological disorder). Annorexia simply means (loss of appetite which causes weight loss). Alot of cancer patients have this and people with conditions like diabetes. I have not been diagnosed with either.

I am now 20 and lost 40 lb's in 2 months when i was 14 years old before then I was fine. I just lost my appetite and couldn't eat anything. I go through times when I can eat everything and other times where I don't want to touch anything. I was reading about being a low body weight it can cause organs (including your nervous system) to not function right I could be wrong tho. I have proven now to myself that my symptoms get aggravated tremendously by my weight if i weigh less my symptoms are aggravated tremendously. so these are my explanations.

1. My dysautonomia is caused by being underweight.

2. my dysautonomia is causing me to be underweight.

3. my dysautonomia is causing me to be underweight which aggravates my symptoms.

My diagnosis was mild pan-dysautonomia i still don't know the full extent of that. but I weighed more when I was 14 before this condition even started then I do as of now. plus I have gotten taller.

I am going into rehab for valium which I have been taken for the panic attacks or whatever they should be called because the entire time they happen I don't panic so IDK what to call them. I keep trying to get off of it I have been on them for 3 years and after 7 days i start having them like crazy. which hyper sensitivity to even my own body movements let alone to sounds and everything else. The rehab I'm going into will also do a psych evaluation and help me gain some weight. they are aware of my dysautonomia as I am seeing a doctor there to see if it is the right place for me this is not a psychiatrist I am seeing. I will be there for 1 month see if i can gain some weight and get off these benzo's which I hope after I get out of there I don't have these awful panic attacks. I could even have PTSD from this condition itself. You guys know this condition takes you to **** and back so developing PTSD from this disorder could happen, think about it.

My question is is it possible that my dysautonomia could be caused by being underweight? ever since I was a little kid i mean like 5,6,7,8,9,10,11,12,13,14, etc. I have always had bad joint paint under my knee's my mother thought they were growing pains but I had no other symptoms of dysautonomia's when i was 14 is when it started when i was 17 is when it hit me full blown and I was 116 lb's.

here is a comment someone posted on a forum: "Also - being underweight can cause anxiety - as low body mass means less adrenaline in the body will still be higher concentration compared to that same amount of adrenaline - but in a higher body mass. So get your weight up which should happen naturally with excercise with the right diet."

I found that on google low bmi = higher concentration of adrenaline

Your thoughts?

btw: symptoms of underweight include fatigue = I have, brain fog = I have, numerous other = I have except the low blood pressure and vitamin deficiencies and strength.

My orthostatic symptoms even improve when I am in low 130's.

And any updates on that retro virus XTRV or whatever it is called I'm curious to know

I have the feeling Mack's Mom will also be posting in this topic

- John

[Lenna]

Interesting topic. My son is 5'11" and weighs about 126 lbs. His BMI is 5%! He has always been excrutiatingly thin with a poor appetite. He gets full very easily. Lately his appetite has been somewhat better (he takes periactin to stimulate appetite) and his nausea is more controlled that it used to be (Domperidone), but he isn't gaining weight. There is certainly a connection, but I never gave thought to his thinness causing his POTS symptoms - I always assumed it was the other way around.

[Jordan5815]

Interesting topic. My son is 5'11" and weighs about 126 lbs. His BMI is 5%! He has always been excrutiatingly thin with a poor appetite. He gets full very easily. Lately his appetite has been somewhat better (he takes periactin to stimulate appetite) and his nausea is more controlled that it used to be (Domperidone), but he isn't gaining weight. There is certainly a connection, but I never gave thought to his thinness causing his POTS symptoms - I always assumed it was the other way around.

Was he always underweight or did it happen dramatically? = What's his story?

[sue1234]

John, have you been checked for all the usual suspects for losing weight, body-sped-up problem, etc.:

1. Hyperthyroid

2. Addison's disease

3. Pheochromocytoma

Just a thought.

[Jordan5815]

John, have you been checked for all the usual suspects for losing weight, body-sped-up problem, etc.:

1. Hyperthyroid

2. Addison's disease

3. Pheochromocytoma

Just a thought.

I have been tested for all but number 2 but i never had a problem with hyperkalemia i was actually hypo several times.

number 3 was the first thing i was tested for when i was in the hospital before they ever found out i had dysautonomia. and number 1 was tested for 4 different times.

So I've been tested for the most part on those. I should check on addisons but it will probaly be another dead end. My endocrinologist back in the day did a ACTH and cortisol test and came up normal.

[juliegee]

Hey John-

You're so right I do have some thoughts to add.....Can't now. Got a crazy AM too. Let me get back to you tomorrow afternoon. I'm leaning towards #3.

More tomorrow-

Julie

[lissy]

Well I was 5'3 120 healthy and had energy an appetite and looked very very healthy before I got sick. In my worst periods I have gotten to lows in the 90's no appetite very unhealthy appearance pale, dry skin, just awful. I have times throughout the month of NO appetite and I lose weight so fast, I can force myself to eat and make effort to gain and get weight up to 100-105 and a bad period will come and I'll lose it in a few days. Recently I have been drinking a few large milkshakes a week and its helping keep the weight on somewhat.

One of my cardios said if I gain weight it would help with the symptoms vascular wise...

I am making a huge effort to gain to see if it helps but its so hard to eat when not hungry and also if I wait to long after I get a craving to eat I get so sick and then can't eat so its very hard to balance it out.

I always thought I had a fast metabolism and it would slow down the older I got but that must not be the case??

Maybe it does have to do with the weight and adrenaline good thought.

[sugartwin]

Well, if you had pains that were called 'growing pains' as a kid and felt much worse to you, you might have EDS or some other connective tissue disorder. Lots of guys with EDS have long, thin lanky frames and trouble putting on weight. They also tend to have low testosterone; the two might be connected.

As far as I know, low body weight (in and of itself) doesn't cause dysautonomia. I suspect half of Hollywood would be bed-ridden by now if it did.

[Jordan5815]

Well, if you had pains that were called 'growing pains' as a kid and felt much worse to you, you might have EDS or some other connective tissue disorder. Lots of guys with EDS have long, thin lanky frames and trouble putting on weight. They also tend to have low testosterone; the two might be connected.

As far as I know, low body weight (in and of itself) doesn't cause dysautonomia. I suspect half of Hollywood would be bed-ridden by now if it did.

I don't have EDS. I also have a medium frame. Towards the Hollywood the people with nervosa do have health problems. Not everyone who is underweight would develop autonomic problems could be other organs. Weak Bones are a big one but most of them appear thin but they are actually of weight they have a lot of muscle, that will weigh more then fat. Also Brittany Murphy's brother posted on here I believe talking about Brittany Murphy most likely had dysautonomia and she was pretty thin. I also noticed in his video he lost alot of weight and had trouble gaining after.

I created a new theory today, in alot of the reports I have read about "POTS" is that if it develops in early teens it usually goes away in their mid 20's when you turn 25 your body goes through a rapid change including your digestion. I'm also looking at the side effects of adrenaline online it causes loss of appetite. Think and think hard before you got sick and this is for everyone to answer not towards one individual person.

After you excercised and worked out were you hungry? I sure wasn't. I was thirsty! if I ate something it had to be cold or like a fruit and drink fluids. if you are underweight your body is still producing the same amount of adrenaline as a person who is of or over weight but at a higher concentration since your mass is smaller. That would cause lack of appetite and back to being underweight causing organs not to function properly possibly triggering a dysautonomia. so when your underweight you are burning more calories just sitting from a higher concentration of adrenaline which causes lack of appetite which could be the root of the problem. I have also read on this forum numerous times that people with dysautonomias are extremely sensitive to adrenaline. Could it be because they already have alot?

I'm also not summing everybody up one thing I have learned about dysautonomia is it isn't a disease it's a dysfunction of a very important part of your body which can be caused by alot of different things. It can be caused by disease but itself is not a disease. This is why ever patient is different because there are different causes for each patient. There are people of normal weight, overweight, and obese with dysautonomia as well. I'm looking tho for some people could it simply be the fact of being underweight? I get to 130's and I'm feeling better I wonder what would happen if i could get to 145.

so person get's a viral illness even tho I don't know if that's how mine started i just know it struck when i was 14 and then i had a surgery for acid reflux. They thought that is why i was losing weight even tho it wasn't. But! illnesses cause lack of appetite and in some cases can be pretty severe when the weight is lost you run into that problem of gaining it back as you have a lack of appetite because of the adrenaline and it can worsen over time.

Dysautonomia could even be triggered from one of the vaccinations they give you when you enter highschool the 4 series hepatitis shot could be the cause for all I know notice POTS is on the rise I don't think it's because there is more awareness I really think it's growing look at what vaccines are doing to babies alot of babies are now starting to become autistic. But after the weight is lost and you have had the symptoms for a while it could just be getting your weight back and watch the symptoms disappear?

- John

[Lenna]

John, To answer your question about my son - he is 18 years old and has a very thin frame. He was been at the bottom of the weight chart his entire life (but at least he was ON the chart; now I'm sure he's way off). He never had a good appetite, always felt full very quickly and has always been a very fussy eater. When he got sick with POTS at age 15, he lost a bunch of weight. He has regained some of it with the help of Domperidone and Periactin, but needs to put on at least 20-30 lbs. to approach anything close to a normal weight now. He tries but it's tough. At one point he was about 8 lbs. heavier than he is now, but then he went through a bad patch and lost that weight again. It's a struggle!

[juliegee]

Hi John-

The more I read of your ponderings, the more I realize that I don't have the answer to your chicken or egg question . I suspect that you probably had dyautonomia your whole life- the growing/joint pains and GERD are clues. When I talk with other parents whose kids end up developing dyautonomia, almost all of them have severe, unexplained pain & GI issues as children. Many also fatigue more easily than their peers & have migraines. Then, PUBERTY strikes (with a growth spurt) and these kids who've been able to function almost normally really become disabled. That's certainly the path that my son took. Mack (17y/o) takes many meds just to be able to eat & function and I strongly suspect he will NOT recover when he hits his 20's. I hope I'm wrong- what a pleasant surprise that would be!

Look to your family for clues. Anyone else have trouble with so-called panic attacks, low weight issues, GI stuff, lightheadedness, tachy, fainting, etc.? If I'm right and you've had this your whole life, it's probably familial/genetic and has some connective tissue disorder connection.

I have a few ideas for your weight. Mack is at the same point that you are now. When he first became sick, he was always nauseous and vomiting. Now, he has very little interest in food, but he says he isn't necessarily nauseous. His GI motility specialist still has him a on tiny pediatric dosage (1/2 tsp) of Ery-ped 200 (liquid eyrthromycin/sweet pink stuff) about 20 min. before meals. It really makes him hungrier. It works by slightly irritating the stomach. I have used it intermittently and it works. I'm surprised that you don't take anything for your GERD. Is that really gone?

Something else to consider that may also help with the adrenaline surges is an antihistamine at night. A great one for you would be Doxepin. It's an old-fashioned antidepressant, that has strong antihistamine properties. It is a potent appetite stimulant. Atarax or Cyproheptadine would be others to consider. They calm down the sympathetic nervous system (help you sleep) & make you hungry. None of these have the addictive properties of valium.

I strongly suspect that you are not having "panic attacks." I'm guessing that it's more adrenaline surges that are a physiological (not psychological) response to something happening in your body- like an impending BP drop, etc. That being said, an inpatient stay sounds really beneficial to safely get you off the valium onto something that's more productive. Describe the symptoms you experience with an attack. What do you do to cope now when they occur?

Forgive me for questioning your motivation, but do you want to gain weight? I know you want the "attacks" to stop, but I don't sense that you perceive the weight thing to be a big issue. I hope I'm wrong. I think it is. Can you exercise now w/o getting easily exhausted? I ask because physical conditioning seems to a big part of improving to a higher level of functioning. I'm personally not able to do that unless I have a little reserve in my body weight. Like you, I feel better, orthostatically, when I'm a bit heavier.

I don't understand the physiological mechanism of this, but I notice in myself (and my son) when we lose weight, we tend to lose more weight. I no longer feel a sense of hunger. I have to force myself to eat to maintain a specific target on my scale. However, when I gain weight, I tend to gain more weight. My extra fat has it's own metabolic properties that make me want more food. Weird. For me, it's all about a number on the scale that allows me to feel the strongest and healthiest.

I'm proud of you for working on this, posting, and asking questions. I'll be sending lots of prayers and good thought you way that your inpatient stay will put you on a better track. Keep us posted on your progress.

Julie

[BloodMage]

Well..I'm not formally diagnosed or anything, I have a lot of dysautonomia symptoms, so i'll share some of my insights.

When I was 18, I lost over 40 lbs. rapidly on a diet just by cutting out soda.I think I was developing mild symptoms before then, and for a while I was attributing that to the aftereffects of a REALLY bad infection I had when I was 13-14 or so.

Anyway, when I lost all the weight, the symptoms started hitting me full force.

So..i'm not sure if weight loss per se causes it ( I was adopted and found out later that I think my one of my sisters may have similiar, if milder, problems) but I think it helps exacerbate it in some cases.Today I saw some study that overweight teens have a drastic drop in their blood pressures after weight loss.Since hypotension is often a dysautonomia finding, maybe gaining a bit would help buffer the blood pressure lows?

[Jordan5815]

Towards family history I will add more on that later but all of majority of them are actually obese. also they were never underweight when they were younger they were of weight. My mother had migraines her whole life that is the one symptom she has always had don't know about anything else I know she had a thyroid problem hypothyroid which caused other problems but that was corrected.

Towards my weight gain: I have been trying to gain weight this past week I have eaten 3 large bowls of pasta a night with a lb of ground beef on it and i eat steamed vegetables for the minerals. I just now have confirmed to myself that weight is largely involved with my symptoms why I'm trying to figure out = that theory i'm trying to figure out. I've wanted to gain my weight back since i was 14 didn't look healthy I was always really muscular and big. I want my same body type back and am working on it.

I still have acid reflux but I don't at the same time. i had surgery to correct acid reflux with a hiatal hernia repair. So the surgery was called the Nissen fundoplication surgery I wasn't vomiting from eating, as of now I can't vomit because of the surgery. I think having the surgery was dumb I had lost alot of weight but it wasnt from the acid reflux because I wasn't throwing up so i was still getting all of the food I ate it was something else.

I was also a Fertility Baby so that could be why I'm so different then the rest of my family with health issues. My mother had to take sterroids to get pregnant and not have a miscarriage. I was also born with TONS of health problems VSD, GERD, and I forget i was a sick baby lol

Also before I got sick I was a conditioned athlete i was a tennis player I played in state championships and also did some international tournaments so I was definately in shape. I do excercise I try to about 4 times a week I just got some roller blades so been having fun with those

I see you went to John Hopkins, what doctors in what department did you see I have USFHP as my health insurance and gonna lose it in february if I don't actually get my disability but that's why I'd like to know what doctors you saw I called them up they sent me lines to neurology genetics and cardiology don't know which route to take.

The Rehab I'm going into would be Drug Rehab with group and 1 on 1 therapy as well as the eating stuff. It's affiliate with a hospital so they can run tests if stuff doesn't seem right as well as a full psych evaluation and 6 ER doctors on staff in the fascility at all times.

Thanks Julie!

- John

[juliegee]

Sorry, somehow lost my post. Check the next page, post #16

[Jordan5815]

towards the disability my problem is I can't stay awake and it's not the valium or toprol xl I can sleep for 14 hours a day and am only up for about 12 hours before i crash sometimes less..... I don't really have a problem with low blood pressure.

So now it looks like puberty is a trigger and underweight makes symptoms worse hmm.... just about everyone who has posted has confirmed that....

(Julie did you mean to post something?) I see you quoted some stuff..

[juliegee]

Hi John-

Wow, sounds like you had a tough start...and health issues from day one. Then you recovered from most of your health issues until age 14 when the GERD became unbearable & you had the Nissen fundolipication. Did your weight loss occur before or after the surgery? How about your autonomic symptoms- after the weight loss? Forgive me for being so curious. I'm just trying to understand your timeline. Perhaps you have more of a trauma/illness onset to your dysautonomia? The trauma of the illness/surgery caused symptoms to flare...and sounds like you've never really found an effective med regimen

When you say you're a fertility baby- are you genetically your parent's child? I ask just because of the connective tissue disorder possibility. I hear that your family tends to be heavier, but remember lot's of heavy people have dysautonomia. But, you're right, aside from the migraines the history doesn't sound strong.

You certainly sound like you are trying to gain weight. That's awesome. Pardon my questioning that. Some folks enjoy being thin, even kind of get a kick out of controlling it & don't see it as a problem. I agree with you that your current weight is definitely contributing to your dysautonomia at this point. I suspect that if you were to get that figured out, your dysautonomia symptoms would be better.

I WISH you could see the same docs we did at Hopkins. They were/are great!!! BUT, we went for my son, who was 12 at the time- all are pediatric. I will tell you what kind of docs we saw to help you find something similar. Since the inability to eat was my son's biggest issue at the time, we started by seeing a pediatric GI motility specialist through the Kennedy Kreiger Feeding Disorders Clinic, Dr. Anil Darbari. He's the one who made the connection that Mack's issues were also autonomic. He arranged all of the testing to be done at Hopkins lots of GI stuff: endoscopy, colonoscopy, antroduodenal manometry with a tilt table test. Then, we were hooked up with Dr.Peter Rowe, a pediatrician who specializes in patients with autonomic dysfunction. I'm thinking you need to find a really good GI or motility specialist, who gets the connection between the autonomic nervous system and GI issues AND a great ANS doc to help you figure out a better regimen.

I learned a lot about motility issues when my son was really sick. Lots of people still have GERD & problems with appetite after the Nissen. You are not alone with that. I hope you can find a doc who helps you figure out a way to reach a healthier weight. PLEASE keep in mind my med suggestions in the previous post. Additionally, I think it wouldn't hurt to treat the GERD as well.

The drug rehab sounds like it'll safely get you off the valium, but maybe not unravel all of your other issues. They are pretty complex. Maybe if they can get you off of the valium and onto an SSRI or Doxepin to address the same issues & help you eat, that'd be wonderful. When do you go in? Prayers being sent your way for better days ahead. Stay strong & keep asking questions. Research as much as you can. No one cares about getting you healthier than you. Post on your progress.

Hugs-

Julie

[Jordan5815]

Julie,

This is John's mom responding. Family history: my mother had a racing heart when she was younger. She said that people across a table could see her heart pounding through her blouse. She used to pass out all the time, and she hemmorraged (spelling) with her cycles. When she was about 30 she almost bled out and had to have a hystorectomy. Just found out from her sister that the family used to find my grandfather in the field. He would pass out. He was a farmer. My Aunt's son also had problems with passing out during his puberty years. He is ok now.

Me: I have 4 siblings (with same mother). I was the only one that was induced. Mom said the reaction was instant. As soon as the peptin was injected into her, I came. She said that I instantly rolled over. She had to wait in the delivery room until a crib was brought in for me. I was walking at 5 months and extremely active and athelitic. I have suffered from migraines my entire life. The stories I have heard from everyone was that I would constantly cry and beat my head. When I was in my 30's I finally told my mother that I remember my headaches at 4 years old and told my mother that I probably had them as a baby because how does a baby tell someone there head hurts, they can't other than cry and hit their head. I lived with a headache every day of my life. When I was 16 my migraines really exploded. I thought I was put on phenobarbitol/dilatin for the migraines but my mother told me no, it was because they thought I was passing out and having seizures. I always hemmorraged with my cycles. Finally, at age 33, I was bleeding out and had a hystorectomy. Since my surgery, my migraines are more manageable. Actually, I have about only 4 days are month that are bad for me now, prior to my surgery I would be lucky if I had four good days a month. I am hypoglycemic. My father was diabetic. Actually, his brother and mother were also diabetics. Don't know much about that sides family history. My mother and father were divorced when I was 5 or 6. I know that there are heart issues, high blood pressure, low pressure on both sides. Weight issues: I was thin until puberty then I was of normal weight. I started taking steriods to get pregnant. Then discovered non-steriodal anti inflammatory pills worked for my migraines. I could take the pill and live. It was great, migraines at bay, not having to leave work/school. Took them for almost 9 years when I discovered that the pills had small traces of steriods in them and I was suffering from all of the side effects except heart attack and stroke. I am very thankful I did not have those. At that point of my life, I was very sick, disabled, couldn't lay down, sit, stand for long period of times. The only comfortable position was in a recliner. I then gained weight. In one year I was on 13 medications and gained 100 pounds. I had a resting heart rate of 105. I tried to find out what was wrong but we couldn't because of the weight causing additional issues and medication causes additional issues. Finally, I was at the end of my rope and I fought my insurance company to get the RNY gastric by-pass surgery so we could find out what was causing the original problem. I am currently about 30-40 pounds overweight. I gained this weight back after what has been going on with John's health and both of my parent's were ill and dying over the past 4 years. My mom passed in March from COPD. She had mitro valve prolapse (diagnosed at least 25 years ago) and was a smoker. She stopped smoking about 7 years before her death.

Pregnancy: I took steriods to get pregnant. John was a high risk pregnancy. I was put on bed rest two times during the pregnancy. The Dr induced me with Peptin. John was full term. 24 and some inches long, weight 8 pounds 10 ounces. His apgar rating at birth was 9 and 10 after one minute. He was holding his own head up and following the noise in the room. As an infant he was the dream baby. He slept all night, wasn't fussing. He was always int he 90 percent for weight/height but he would have projectile vomiting up to 4 hours after eating and he would turn blue. He also had digestive problems. He had issues with constipation. When he was 6 weeks old he was finally diagnosed with VSD. The reflux diagnosis was either right before or after the heart diagnosis. John started walking at 7 months. He was taken to the orthopedic Dr because he was going bowlegged before he was 1 year. John was 3 feet tall on his 2nd birthday. He was never fat but he was of normal weight and muscular. He was very athletic even at 2. He wanted to throw balls over the one story house. He would spend hours practicing, finally he did it, same thing with riding a bike around obstacles. When he was 4 and 5 he was riding a horse (barrel racing) in rodeos. He was also ice skating, playing soccer, and t-ball then baseball. There was not a sport that he did not excel. All during his growing, he would complain of bone pain. I was told it was normal growing pains because he was taller than most. Now he is of average height for his age. His weight has bothered him since he lost it at age 14. I notice when he is heavier, he does not suffer from his symptoms as much. Once he loses weight, he suffers.

Age 13: John was playing tennis competatively. He started falling down. He was going through a growth spurt. His falling was so bad, I took him to Drs. Who brushed it off as a child who wants attention. My husband was deceased and I didn't work. John had undivided attention. The Dr was a joke.

Age 14: John lost 20 pounds, had surgery for reflux, lost another 20 pounds. At that time, John was around 5 ft tall. By the time the weight came off he weighed 117. He is now 5 ft and his weight range 122-134. At least 35 pounds underweight.

By age 15: John was no longer involved in sports. He was a passenger in a car accident with a 18 wheeler he had a head injury.

Age 17: John was having chest pains and was diagnosed with pulmonary hypertension. When I asked for documentation to transfer job locations, the Dr said after re-checking the test, he did not have it. I transferred to a lower elevation. By Dec 2007, Jan 2008, John was disabled. He would sleep 18-36 hours straight. He would try to eat but did not have an appetite and couldn't gain weight. He was finally diagnosed with POTs in June 2008. I think John has covered everything from this point on.

- John's Mom

Ok John here now, what you guys think?

During those "panic attacks" If that's what they are called I get nauseous then i start feeling slightly anxious with heaviness in my chest I then get a palpatation then my heart just takes off and hits about 160bpm with constant feelings of skipping beats the entire time it's going on. I usually end up on the ground my hands and feet start getting tingling then parts of my body go numb and i start shaking rapidly. the heart palpatations knock the wind out of me each time i have them during the attack. afterwards I'm exausted and usually go to sleep. those started when I was 17 valium stopped them.

[juliegee]

Hi John (& Mom!)

So good to hear from the primary source . NOW, it sounds like a connective tissue disorder is not out of the realm of possibility- Mom's severe migraines, Grandma's tachy, Grandpa passing out, etc. That predisposition coupled with the trauma of your "illness" (GERD) and surgery, not to mention your car accident! Many here have multifaceted possibilities for the cause of their dysautonomia...sounds like you do too. Additionally,your infant/childhood issues, with the exception of VSD, sound similar to Mack's- except that he was VERY uncomfortable (GI stuff, we think) and cried incessantly and are consistent with early dysautonomia signs

Your attacks sound JUST like mine. This is a long shot, but do you ever have skin issues- flushing, itching, bumps, hives, red itchy skin after showering? How about irritable bowel, with "D"? I ask because the early GERD is very indicative of a mast cell disorder....and the similarity between our attacks is uncanny- down to the shaking and falling asleep afterwards. I used an epi-pen during one and it STOPPED. I'm certainly NOT recommending that for you, but trying some OTC meds wouldn't be a bad idea. I'm wondering if overly reactive mast cells may be behind your symptoms. Doctors at Vanderbilt were the first to make the connection that some POTS patients also have MCAD (Mast Cell Activation Disorder.) Many are noticing that those with an underlying connective tissue disorder are even more prone. Check out this link to learn more and to see if you think the symptoms fit:

http://www.tmsforacure.org/mastocytosis.shtml

Trying 300 mg of ranitidine (zantac) and 10mg of zyrtec in the AM is a good place to begin checking this out. The first is an H-2, which will address any leftover GERD and the next is an H-1. The combo is effective as a daily preventative to calm down overly reactive mast cells. They are both OTC and quite benign. (Some folks experience drowsiness with zyrtec- even though it is non-drowsy.) If that happens, take it at night. I have repeated this several times, but I think you would get great benefit from Doxepin, Atarax, or Cyproheptadine in the PM. They are all potent H-1's, will calm down your sympathetic nervous system, increase appetite, and help prevent "attacks." Regardless of whether or not MCAD is behind your symptoms, any one of these 3 meds will be helpful to you. I suspect that a goal of trying to get off of the valium and onto one of these would be great for your stay at rehab.

Thanks to your Mom for filling in the blanks. A 5 month old walking and you weren't far behind at 7 months!!!!! I sense Mom's worry and concern for you, John. When my son was so sick, it was very scary. My heart breaks for you both, but I'm so happy to see what a great support system you have. Best of luck untangling this and for your stay at rehab. PLEASE keep us posted on how that goes. Prayers & good thought being sent your way.

Hugs-

Julie

[Mito Momma]

I just revisited my cardiologist last week. He said that my pots was under control. They did orthostatics and my heart rate really didn't change. I was shocked considering that my symptoms are still there. Anyway, he told me that I have gained 20 lbs. since I last saw him and that's probably why my pots is better. I had never heard of this. It really didn't occur to me what he said until after I left.

On another note, I wish I hadn't gained those 20 lbs. I wasn't underweight in the first place. I was just in shape. Running marathons and lifting weights will do that to ya.

[houswoea]

Uh, not much to add to the info here...

just thought I'd say that I went to nutritionist because I couldn't gain weight and he put me on protein and plant fat pills. He said that way I would at least have the raw materials my body needed to survive if I was having a period when I couldn't eat. I can't really say if it's worked because of other problems I've had lately, but you may want to consider it?

[erik]

I'm not familiar with a specific weight-range being associated with dysautonomia, but I have come across two things semi-related:

I've seen "rapid weight loss" listed as a potential cause for POTS on some websites (as opposed to post-viral, etc.)

Also Dr. Grubb was noticing many patients developing orthostatic intolerance/tachycardia (a.k.a. POTS) following gastric-bypass surgery (mentioned in this article here). Additionally, they were often helped by standard POTS treatments of fludrocortisone or midodrine.

[RichGotsPots]

When i flare, I lose a lot of weight. Before my last biggest flare I was 185lb now I'm 155lbs starting to gain it back slowly, but my flare burns so many calories and eating carbs pools my blood, not helpful