I have visited this site several times, but this is my first post. A couple of days ago I read a post mentioning pancreatitis and POTS. Is there a connection? I thought I was dealing with two different conditions.

Here's my story... In December, 03, I experienced my first bout of acute pancreatitis. Following two more bouts, I was diagnosed with pancreas divisum through ERCP and a stint was placed in my pancreatic duct. I thought I would never experience pancreatitis again, but that was not the case. I have been stinted several times (have had 9 ERCP's plus every other test available) and had a sphincterotomy. In July, 06, I had a small stroke. I am not overweight, do not smoke, or drink, and was not a candidate for a stroke. Drs finally decided the stroke was caused by hormone replacement therapy I was taking. Hence, a hysterectomy in October, 06. I am also a little anemic and have had transfusions on two different occasions. In July, 07 I travelled 16 hours from my home to the Cleveland Clinic where I saw a pancreatitis specialist and a cardiologist specializing in POTS. My TTT was positive for POTS, but the drs did not make a connection between the pancreatitis and POTS. Just recently I was tested for celiac disease. I tested negative but was told I may still be gluten intolerant. I have drastically changed my diet and eat lots of fresh fruit now which has helped some. My cholestrol level dropped 50 points in the three months I have been gluten free, but I'm sure that's because of the diet change. My doctor had said my high cholesterol was genetic and that diet would not help, but it did.

I have a high stress job and a type A personality. I've always thought things were not done right unless I did them myself. I've noticed that is the case with many people who have POTS. I am unable to stand and have a discussion with people. I've never passed out, but I know I would if I did not sit or lean against a wall. I have some short-term memory loss and brain fog, making my work very difficult. Right now I am working half-days when I can. My husband is very supportive and does the laundry, housework, and shopping. I try to kick in a little with folding laundry and fixing a few meals. That's about my limit!

In 2007, I was hospitalized 7 times, including the entire month of February. I cannot afford to keep going in the hospital, so I have observed what to do when I have pancreatitis and withdraw immediately from food, take pain killers and phenegran. That has kept me out of the hospital even though I've had pancreatitis six more times since January, 08. My medical insurance is lousy and I have over $100,000 in unpaid bills. So far, my insurance pays enough that the drs will still take me even though they're not paid in full.

I do feel fortunate in comparison to so many others. I know many people are bed-ridden with POTS. It seems that sooo many people are afflicted with ANS, and yet so many physicians fail to recognize and treat it.

Sorry for the length of the post. I still have a lot to say, but don't want to bore you with the gorey details.

Mollie, I just received a general diagnosis of dysautonomia and have much to learn. One piece of info I have been looking for its potential link to pancreatic issues. One of my health problems this winter was intestinal pain, gas and bloating. A CT scan identified an enlarged area in my pancreatic duct which an endoscopic sonogram then identified as a focal dilation of the pancreatic duct at the neck of the pancreas - with no known cause. I don't know if there is any link to dysautonomia but wanted to share my anecdotal evidence with you. I will be interested in learning whether others also pancreatic issues, or if anyone is knowedgeable about this topic. Best wishes to you, Molly.

Hey Molly,

I too have pancreatitis. My only real noticeable symptom is elevated pancreatic enzymes. I have had one ERCP here where I live, which dx a mild to moderate pancreatitis. A prior CT scan confirmed pancreas divism for me too.

My enzymes go up and down. Right now they are down. I just got done with a 2 week stay at Mayo in AZ. My pancreas-specialty GI doc isn't sure if any of my symptoms are pancreas related. The only real possible symptoms I can see that are connected are the fact that I have delayed insulin release when I eat (dx with a long glucose tolerance test) and/or possibly the lightheadedness I get after I eat; my inabiliy to eat sugar, including fruit sugar, without anxiety/panic; and possibly my recently diagnosed vitamin A deficiency (doctor said that is probably from malabsorption due to pancreatitis).

In June I am supposed to go back to Mayo for a more sophisticated ERCP that will stimulate my pancreas to look for a blockage in my extra pancreatic duct. They will also biopsy for celiac to be "gold standard" sure I don't have it. I test negative for it through blood.

In my opinion I can see these being connected if there is limited blood flow to the pancreas due to low blood volume. I can also see these connected as there is a possibly that both can be autoimmune related.

Have you been tested for autoimmune pancreatitis? I am currently waiting for my test results on that. If I have it there will be no reason to do the ERCP. I'll have to be on mega Prednisone to clear the inflammation out. It is a specific blood test and you have to ask for it unless your GI is especially enlightened and has already tested for it. My GI at home never tested for it. Mayo has discovered the autoimmune connection so I think it is standard for them to test for it now.

For some reason I feel deep down that the the dysautonomia is connected with the pancreas issues. I feel in my heart that getting my blood volume up is going to help with the pancreatitis too. That is what I am praying hard about these days.

I am also having acupuncture to help open up all the blocked energy that I'm sure I have. My autonomic system is "on" all the time. I'm feeling better since starting Florinef so I am convinced that I had perpetual low blood/plasma volume. I was drinking tons of salt water a day but simply wasn't holding onto enough of it. I feel like the Florinef has tipped me in the right direction.

I'm sorry you're drowning in so much debt. That is so stressful.

PM me if you want to talk more specifically.

Amy

I have not been tested for autoimmune pancreatitis. Is it diagnosed through a blood test or what?

My lipase level has tested in excess of 37000 before. The doctor had never dealt with levels that high and had the lab run the test again for verification. He also put me in ICU during this time. My levels get very high quickly, and they also drop very quickly. I definitely know that the effects of my pancreatitis seem to vary a lot from others who experience episodes. The drs usually just shake their head and we wait until it happens again. I feel like a ticking time bomb just waiting to explode!

Thanks for the input and please keep me abreast of any new info that comes available through your exeriences. I hope this may arm me with more information to share with drs. It appears that we POTS patients have to mainly advocate for ourselves, with a little help from physicians.

Hi Mollie

I don't have pancreas issues (as far as I know)but I just wanted to say I COMPLETELY AGREE WITH THIS PARAGRAPH YOU WROTE:

I have a high stress job and a type A personality. I've always thought things were not done right unless I did them myself. I've noticed that is the case with many people who have POTS. I am unable to stand and have a discussion with people. I've never passed out, but I know I would if I did not sit or lean against a wall. I have some short-term memory loss and brain fog, making my work very difficult. Right now I am working half-days when I can. My husband is very supportive and does the laundry, housework, and shopping. I try to kick in a little with folding laundry and fixing a few meals. That's about my limit!


Only after my symptoms got severe did I tell people, you notice how I always lean when standing and talking to you....its because I always felt like passing out. But it was never bad enough to bother going to a dr.

There have been so many YES moments lately - because only people who are going through this really understand it. Now if only I can get the right doctor who also understands and says YES.

And the memory/brain fog and inability to do what I used to be able to do so easily is SO irritating.

If you have any ideas of what might help the memory/brain fog, please share!!!

Thanks!

Mollie,

Man, your lipase is HIGH sometimes! The highest mine has been is a little over 1000. That was just a few months ago. Now it is around 150. It went from 1000 to 150 in about 2 months.

Autoimmune pancreatitis is diagnosed through a blood test.

As for brain fog. . .I have noticed less of it since I started the Florinef.

My GI in AZ said that if my duct is blocked it is not a real easy thing to fix since it can trigger a massive pancreatic attack. Is that what happend to you? Have you had worse problems with it since you had the stent placed?

Are your dysautonomia symptoms worse during a pancreatic attack? Do you get a slammed by both at the same time?

Hi guys,

I too was recently diagnosed, like MEB. It sounds though like you guys are like me, you have annoying symptoms but are out there working, living and functioning. That is what I'm looking for...some encouragement...Like, Aimée, I am benefiting from florinef, although I'm a little concerned about the potential side effects...like blindness, I read...omg...have any of you tried mitodrine? Does that help? And, i think the salt helps too. I also have very bizarre sleep experiences...I get strange flashes in my head and chest at the onset of sleep..it's very scary and annoying..I wonder if it's the blood being forced up to the heart and brain or s/thing. My sleep dr just looked at my like I was insane. A little about me, I'm 34 and a Flight Attendant, and I'm fighting this all the way. I looove my job and am doing e/thing I can to stay well and keep it. I'm trying accupuncture this week. Anyone have luck w/that?
Nice meeting you all!

Sorry, I meant like "Amy" ...used to spelling my own name.

I too have a history of pancreatitis. My problems began during a pregnancy that went steadily downhill - many doctor, ER visits, they told me I was overdoing it. (Was couch ridden).
I delivered premature with pancreatitis and fell into a Diabetic coma. They took my gall bladder out and blamed the pancreatitis on gall stones blocking the duct.
I became a type 1 diabetic in my mid 30's.
I've since had milder pancreatic episodes, not requiring hospitalization- but do the same, start avoiding food, ect.
I also have 2 items on the brain MRI that they say are strokes, but do not look exactly like stroke normally does on the scan.

I'm also anemic often, not requiring hospitalization.
I have no reason to of had stroke, except the DKA. They did a heart catheter surgery on me and there is no Pfo, and I am very clear in the arteries, no smoking, cholesterol is great.

They have also mention celiac to me and had me on a no wheat diet for sometime, but took me back off. Blood tests showed no celiac, but I've never had the biopsy either. I did also feel better during the diet, but it could have been a remission period.

So far I am inconclusive, my ttt was ok, but I get hypotensive & tachychardic when standing in the doc's office. Does not make any sense.

I'm sure sorry to hear all you have gone through. ((Many hugs)) I would love to hear any other ideas or thoughts you have.

Jazzy

Aimee,

It is so weird that you mention the sleep thing because I have a really hard time with sleep. It has gotten to the point that I dread going to sleep. What happens with me is that I jump awake usually within the first hour of falling asleep. My heart is pounding and I'm scared. Rosie suggested sleep apnea but I wore one of those oximeter things on my finger while I was in AZ and it didn't show any drops in my O2. BUT, I didn't have one of my "episodes" that night either.

I've tried to pay attention to what I do on the nights that it happens. . . did I eat enough, not enough, did I drink enough, not enough, did I take an Ativan that day or not, etc. I had them a lot while in AZ so it may be a stress-type thing. I just don't know.

As for the Florinef I'm avoiding reading all the possible side effects. I simply can't afford to worry about another thing. AND, I am feeling better on it so it is a moot point for me.

As for acupuncture, I am trying it and I've had good results so far. I go for another treatment tomorrow. The guy I go to is a doctor of chinese medicine so he does Chi testing and some other kind of things. I find it all very interesting. As long as I feel better I will continue to go. As soon as I don't notice anything I will stop. I am not wasting any (more) money on alternative treatments.

I am 37 and have had my ANS symptoms for 3 years. I wasted a whole year and spent a lot of money on homeopathic treatments/vitamins/visits with a homeopathic M.D. Two of the remedies I tried did really well for those symptoms it's just that those symptoms were not my main problem. He never got to the bottom of what my main problem was. At least with the acupuncturist he is "listening" to my body with the Chi testing so I feel a little better that the treatments are targeting what they need to target.

I've also read a lot about how acupuncture is being acknowledged by the medical community as being effective for certain things. I'm hoping POTS can be added to that list one day.

What are the good things that the florinef does for you? For me I have noticed an increase in my energy level. I've also noticed less lightheadedness after I eat. My head fuzziness is almost gone. I feel like I can concentrate better. I just started it last Sunday so I've only had a few days on it. Yesterday my heart rate was great, in the 80's even when standing. I also slept decently last night, only a little jolt awake after I fell asleep. Today my heartrate has been higher, some 110's when standing.

I've been struggling for a few weeks with a huge lump in my throat. It also comes and goes. The only thing I can possibly attribute that to if it isn't strictly POTS-related, is allergies. It is also very disconcerting as it makes me feel like my throat will close up and I'll suffocate.

Amy

OMG!!! This is very interesting...

I have also had issues with pancreatitis and have cystic structures in my pancreatic and common biliary duct.

I have been through so many different endoscopic procedures over the past 8+ years and have also had stents placed in my pancreatic and common bile ducts and have also had the shincterotomy.

This is very interesting and I am going to copy the posts and send to my two GI docs - both at Hopkins.

I will tell more soon but this is veyr interesting and makes me really wonder how many patients have this in common.