MidlineNotFine
03-09-2007, 10:31 PM
Hello All,
I have what I believe to be a catch-22 question. I have read a lot of your posts and they are very helpful so I am hoping for some personal peer consults. (Shoreline - your help is very to the core of it so I hope you respond).
I have midline abdominal pain. Have had for 2 years now. GE doctors do not know cause but the last one finally just said "stress" (really??? 2 years later???). I also have a Neuro doctor - for apnea originally (though I'm young 30's ... hereditary luck!) - who recently prescribed Vicodin 5/500 to hold me over until new GE could diagnose and take over for midline pain. Btw - CPAP machine has worked wonders ... not for the midline pain though but the sleep recoup has been remarkable!
Midline pain starts right below sternum and builds quickly to 6 to 8 pain. It's debilitating. If it happens early in the a.m., I have to call in sick to work b/c I can't take drive w/ the pain and won't drive on the 5/500 even though it doesn't work very well. Ibuprofen has always been much better for me than Tylenol but I have moderate gastritis as well (probably in part from too much Ibuprofen).
So, I've done a lot of work-up and continue per doctor's instructions. I do not cancel/miss appointments and am very open. I have had two ultrasounds, two MRCP's, two endocospies and one upper GI (CT scan) along with my gall bladder being removed almost two years ago (which has had it's only very unpleasant digestive side effects).
My midline pain is what I see describes at b/t on the forum. It's not constant enough for all the time meds but it is enough to ruin chunks of my life and I cannot make life changes to avoid (have tried no lactose, no grain, no this, not that, etc.) and certain meds do not have any impact (protonix, pepcid, tums, anti-spasmodics, anti-cholergenics (sp?), anti-anxiety, etc.).
So, I research as much as possible on the Internet which seems to be a blessing and a curse. I have read to not be too straightforward with docs b/c I might be labeled. My problem is the 5/500 is not effective enough. I usually self-induce vomiting after the first pill (that seems to help w/ pain regardless of meds) and then have to take 2 over next 4 hours and then another after 7-8 hours (from 2-pill dosing) to just cut pain in half. This is not ideal (and I do use a heating pad too ... helps a little ... have also used sports rub).
My new GE (my third) is having me run to grab the film from my MRCP's for his Radiologists to see as well as all prior records with a seemingly 30-day+ observation (the doc has said, "I am not going to get you hooked on narcotics." - Hey, I agree if pain can be treated alternatively.) I have also released my previous records to him (and anybody else). I have taken Stadol NS in the past per my previous GE and stopped months ago (did not like ... did help ... side effects not pleasant). My Nerou gave me the 5/500's as a stopgap but my new GE wants all the history and many new exams before even discussing pain management. My Neuro would prefer me on Neurontin at 300 mg a day (100mg 3x/d) but that doesn't seem to make sense based on my research and b/t vs. chronic pain. My PCP defers to all others.
Long post ... sorry! I meet with my Neuro next week. The 5/500 is not sufficient. Maybe Vicoprofen would work better except for the gastritis. I was encouraged to research but then I read that knowing/saying too much can get me "tagged"? Not sure what to do. Should I acquiesce to Neurontin at 300 mg/day even though that does not seem logical based on my symptoms and not wanting to take a med continuously (I also take Ambien CR (insomnia), Librax (post-gallbladder removal) and Xanax (pre-lunch ... may be the only thing that really helps pre-lunch or dinner and I'm going to talk to my GE about quiting the Librax to see if that's true - hey, one less med would be great! - btw ... I take one 0.5 Xanax only).
It just seems asking for something stronger than the 5/500 now will just cause me problems but not saying anything will not help either. What should I do? I have a young child and the pain is stealing precious moments. I am supposed to take a vacation soon but do not want to go with our friend's family and be a "painful" distraction.
Any recommendations? Thanks so much for your help. The threads are sometimes discouraging (yet honest) but do help provide a compass. I'm used to being told to just take Tylenol, so the 5/500 isn't a backtrack but it really isn't much of an improvement either.
Thanks again in advance for your help. Looks like next tests are 24-hour urine deal and then SOD manometry and then EUS and then ERCP. ERCP scared the junk out of me b/c pancreatic problems potential.
Again (broken record), thanks for your posts. I just want some normality. No vomiting at work, no child crying b/c Dada has a boo-boo, etc.
I have what I believe to be a catch-22 question. I have read a lot of your posts and they are very helpful so I am hoping for some personal peer consults. (Shoreline - your help is very to the core of it so I hope you respond).
I have midline abdominal pain. Have had for 2 years now. GE doctors do not know cause but the last one finally just said "stress" (really??? 2 years later???). I also have a Neuro doctor - for apnea originally (though I'm young 30's ... hereditary luck!) - who recently prescribed Vicodin 5/500 to hold me over until new GE could diagnose and take over for midline pain. Btw - CPAP machine has worked wonders ... not for the midline pain though but the sleep recoup has been remarkable!
Midline pain starts right below sternum and builds quickly to 6 to 8 pain. It's debilitating. If it happens early in the a.m., I have to call in sick to work b/c I can't take drive w/ the pain and won't drive on the 5/500 even though it doesn't work very well. Ibuprofen has always been much better for me than Tylenol but I have moderate gastritis as well (probably in part from too much Ibuprofen).
So, I've done a lot of work-up and continue per doctor's instructions. I do not cancel/miss appointments and am very open. I have had two ultrasounds, two MRCP's, two endocospies and one upper GI (CT scan) along with my gall bladder being removed almost two years ago (which has had it's only very unpleasant digestive side effects).
My midline pain is what I see describes at b/t on the forum. It's not constant enough for all the time meds but it is enough to ruin chunks of my life and I cannot make life changes to avoid (have tried no lactose, no grain, no this, not that, etc.) and certain meds do not have any impact (protonix, pepcid, tums, anti-spasmodics, anti-cholergenics (sp?), anti-anxiety, etc.).
So, I research as much as possible on the Internet which seems to be a blessing and a curse. I have read to not be too straightforward with docs b/c I might be labeled. My problem is the 5/500 is not effective enough. I usually self-induce vomiting after the first pill (that seems to help w/ pain regardless of meds) and then have to take 2 over next 4 hours and then another after 7-8 hours (from 2-pill dosing) to just cut pain in half. This is not ideal (and I do use a heating pad too ... helps a little ... have also used sports rub).
My new GE (my third) is having me run to grab the film from my MRCP's for his Radiologists to see as well as all prior records with a seemingly 30-day+ observation (the doc has said, "I am not going to get you hooked on narcotics." - Hey, I agree if pain can be treated alternatively.) I have also released my previous records to him (and anybody else). I have taken Stadol NS in the past per my previous GE and stopped months ago (did not like ... did help ... side effects not pleasant). My Nerou gave me the 5/500's as a stopgap but my new GE wants all the history and many new exams before even discussing pain management. My Neuro would prefer me on Neurontin at 300 mg a day (100mg 3x/d) but that doesn't seem to make sense based on my research and b/t vs. chronic pain. My PCP defers to all others.
Long post ... sorry! I meet with my Neuro next week. The 5/500 is not sufficient. Maybe Vicoprofen would work better except for the gastritis. I was encouraged to research but then I read that knowing/saying too much can get me "tagged"? Not sure what to do. Should I acquiesce to Neurontin at 300 mg/day even though that does not seem logical based on my symptoms and not wanting to take a med continuously (I also take Ambien CR (insomnia), Librax (post-gallbladder removal) and Xanax (pre-lunch ... may be the only thing that really helps pre-lunch or dinner and I'm going to talk to my GE about quiting the Librax to see if that's true - hey, one less med would be great! - btw ... I take one 0.5 Xanax only).
It just seems asking for something stronger than the 5/500 now will just cause me problems but not saying anything will not help either. What should I do? I have a young child and the pain is stealing precious moments. I am supposed to take a vacation soon but do not want to go with our friend's family and be a "painful" distraction.
Any recommendations? Thanks so much for your help. The threads are sometimes discouraging (yet honest) but do help provide a compass. I'm used to being told to just take Tylenol, so the 5/500 isn't a backtrack but it really isn't much of an improvement either.
Thanks again in advance for your help. Looks like next tests are 24-hour urine deal and then SOD manometry and then EUS and then ERCP. ERCP scared the junk out of me b/c pancreatic problems potential.
Again (broken record), thanks for your posts. I just want some normality. No vomiting at work, no child crying b/c Dada has a boo-boo, etc.
Sponsor
Shoreline
03-10-2007, 10:25 AM
Hi MidlineNF, I did read you last post and I'm glad I did because I would have wasted time asking about the use of Nito. I've had a terrible cold all week so my head is a little foggy right now. I also have to work today which means I need to use my time right now preparing for that. . Real quickly, I don't believe there is such a thingas being too informed, It's what we do with that info that causes docs to get upset. Like self DXing or choosing not to try a med or modality because of something we read.
A few years ago, I DX myself with gerds/reflux which made sense as I had some trouble in the past and the pain/discomfort was almost identical. Unforturnetely I was wrong and ended up having a heart attack on my 36th B-day and having stents placed in my LAD artery that night. So a little nowledge can be a dangerous thing if we act on that or don't act based on that knowledge.
My point is a doc shouldn't be afraid to discuss anything we want to discuss. We may be wrong or he may be wrong. Often the practice of medeecine is no more than a best guess or a particular docs opinion.
Where a doc might have a problem with the information we gather is when we refuse to try something they suggest because it doesn't make sense to us. Neurontin isn't a dangerous drug IMO. The worst that will hapen is it willmake you groggy or forgetful and there is some sense in using it as the pain transmitted from stomach and esephogeal problems and heart problems tracel along the same pathway, the Vega nere I beleieve? So using a med to treat or interupt a signal along that nerve does make sense even thoiugh you painisn't constant as in 24/7 and unrelenting. But it is constant enough to have gone through all the diagnostics and trial and error you have already been through. The info gathered during trial and eror will hopefully lead to a better understanding of the problem and hopefully a more effective treatment plan.
As far as PM, the motrin or IBU does jump out as a red flag and can certainly make any GI problem worse. I undertsand the ned to try something to relieve pain but if that something may bemaking things wose, you may want to take a break from it. If there is the slightest posibility an off label use of a med that isn't terribly dangerous like Neurontin may help, refusing to try would likely cause a doc to get angry and lead to a arcastic remark like "what do you suggest then since you know so much" Obviously we are there because were lookng for a docs expereience and edduucation to provide an answer we haven't been able to find.
Personally I would try the neroutin just to see if it may work. 300 mgs is a small dose and you may not get results at that level. You may not get results into you reach 1200-1800 mgs a day. I would suggest giving it a fair trial and allowing the doc to adjust the dose as long as you ca tolerate it. If after a few months they haven't found any dose has any effect, then it's safe to assume your not on the right track. Research and knowledge is great, it's what we do with that knowldge or the decisions we make based on that knowledge is what tends to anger docs.
It may take months or years of testung and trial and error but I don't really se that as a waste of time as ruling out each modality should lead a doc in the right direction as to what to try next. If your unwilling to try something, that something may be the answer you have been looking for and that would be a teribele shame to miss an opportunity for some relief.
My firs sugestion would be to give it a try, show you have confidence in the docs decsions but it's OK to ask how things work or why things work, but the bottom line is , may things do work and they simply don't know why. The mechanism of actin is unknown for many meds, they just know it works after years of trial and error with other patients. It doesn't make sense for a doc to keep prescribing a med for a set of symptoms if he has never seen any benefit. So we hope we will be one of those that does. If not, it's just one more thing we know doesn't help which may lead docs in a different direction and hopefully towqards a more effective treatment plan.
I really do need to spend this time geting ready for work, but I will come back and se what's going on and perhaps make a few other sugestions or or give a different perpective on how to look at things that you may not see the benefit in trying.
Have you had a cardiac workup, stress test, EKG and blood work following an acute episode to rule out the cardiac factor? That's truly the scarry part about midline pain is that you don't know for sure when it's happening if it's GI or cardiac.So better to error on the side of caution and treat each episode as anyone else with that kind of pain should.
Tell us more about anything you can and I wil come back and take a look, and hopefully something else will triger something in someone that has experienced the same type of pain. I should be in the shower by now so I really have to get moving.
Take care, Dave
A few years ago, I DX myself with gerds/reflux which made sense as I had some trouble in the past and the pain/discomfort was almost identical. Unforturnetely I was wrong and ended up having a heart attack on my 36th B-day and having stents placed in my LAD artery that night. So a little nowledge can be a dangerous thing if we act on that or don't act based on that knowledge.
My point is a doc shouldn't be afraid to discuss anything we want to discuss. We may be wrong or he may be wrong. Often the practice of medeecine is no more than a best guess or a particular docs opinion.
Where a doc might have a problem with the information we gather is when we refuse to try something they suggest because it doesn't make sense to us. Neurontin isn't a dangerous drug IMO. The worst that will hapen is it willmake you groggy or forgetful and there is some sense in using it as the pain transmitted from stomach and esephogeal problems and heart problems tracel along the same pathway, the Vega nere I beleieve? So using a med to treat or interupt a signal along that nerve does make sense even thoiugh you painisn't constant as in 24/7 and unrelenting. But it is constant enough to have gone through all the diagnostics and trial and error you have already been through. The info gathered during trial and eror will hopefully lead to a better understanding of the problem and hopefully a more effective treatment plan.
As far as PM, the motrin or IBU does jump out as a red flag and can certainly make any GI problem worse. I undertsand the ned to try something to relieve pain but if that something may bemaking things wose, you may want to take a break from it. If there is the slightest posibility an off label use of a med that isn't terribly dangerous like Neurontin may help, refusing to try would likely cause a doc to get angry and lead to a arcastic remark like "what do you suggest then since you know so much" Obviously we are there because were lookng for a docs expereience and edduucation to provide an answer we haven't been able to find.
Personally I would try the neroutin just to see if it may work. 300 mgs is a small dose and you may not get results at that level. You may not get results into you reach 1200-1800 mgs a day. I would suggest giving it a fair trial and allowing the doc to adjust the dose as long as you ca tolerate it. If after a few months they haven't found any dose has any effect, then it's safe to assume your not on the right track. Research and knowledge is great, it's what we do with that knowldge or the decisions we make based on that knowledge is what tends to anger docs.
It may take months or years of testung and trial and error but I don't really se that as a waste of time as ruling out each modality should lead a doc in the right direction as to what to try next. If your unwilling to try something, that something may be the answer you have been looking for and that would be a teribele shame to miss an opportunity for some relief.
My firs sugestion would be to give it a try, show you have confidence in the docs decsions but it's OK to ask how things work or why things work, but the bottom line is , may things do work and they simply don't know why. The mechanism of actin is unknown for many meds, they just know it works after years of trial and error with other patients. It doesn't make sense for a doc to keep prescribing a med for a set of symptoms if he has never seen any benefit. So we hope we will be one of those that does. If not, it's just one more thing we know doesn't help which may lead docs in a different direction and hopefully towqards a more effective treatment plan.
I really do need to spend this time geting ready for work, but I will come back and se what's going on and perhaps make a few other sugestions or or give a different perpective on how to look at things that you may not see the benefit in trying.
Have you had a cardiac workup, stress test, EKG and blood work following an acute episode to rule out the cardiac factor? That's truly the scarry part about midline pain is that you don't know for sure when it's happening if it's GI or cardiac.So better to error on the side of caution and treat each episode as anyone else with that kind of pain should.
Tell us more about anything you can and I wil come back and take a look, and hopefully something else will triger something in someone that has experienced the same type of pain. I should be in the shower by now so I really have to get moving.
Take care, Dave
MidlineNotFine
03-11-2007, 12:16 PM
Shoreline - thank you!
It is interesting that you brought up cardio. I have not had a EKG, stress test, etc. but was going to ask my doctor about getting those done at my next appointment. I certainly don't want to drop dead at 32. And I can't say what bloodwork has been done to date, I just know their have been hundreds of vials drawn and tested - all with normal results.
Stress and anxiety are players I think in some way. At the very least they make episodes worse because I focus on "how bad is it going to be this time". This is where my friends have told me to adopt Yoga or something similar though I do put in 30 minutes of exercise a day and my family keeps me busy!
Here are the mainstays of my acute attacks or my 90%-ers:
- Stomach is relatively empty (i.e. do not occur after meals)
- Starts as burning/cramping just under the sternum
- Pain grows to a little over 1.5" in diameter and builds quickly
- Pain radiates straight through to the back and then spreads out in straight lines towards my arms
- Antacids, PPI's, SSRI's, anti-spasmodics, anti-anxieties, nitro, ... all don't help
- Self-induced vomited does help and it feels to me that it is the contractions that help with the pain and not the evacuation of the stomach
- Pain is severe enough that I have to lay down or across an ottoman with a heating pad. Pain can last 4-6 hours and can occur multiple times in a day or have days between. I do have dull lingering pain after each attack. The onset of an attack can and does wake me at times during the night but the attacks can happen at any time during the day or night.
My blood pressure is 130/80 and pulse is normal.
My fear with Neurontin, though it is a very low dose (300mg/d versus some people being on 4800mg/d), is the sleepiness since I just came back from missing work due to sleep apnea. I was falling asleep at the wheel, at my desk, etc. First they thought Narcolepsy b/c of my age and I'm thin but sleep test showed OSA. I just finally came off using Ritalin which was helping me stay alert while I replenished the years of lost sleep through a sleeping machine. I feel rested now (finally!) and hated Ritalin and I'm fearful of things that can fatigue me on a continual basis, but like you said, I need to just tell my doctor my fears and why and then follow his lead b/c he could be right.
I will lay off the NSAIDs. You're right. Short-term gain could just mean more pain later. Tylenol just has never worked well for me for anything. That is probably why the Vicodin 5/500 doesn't help much for the attacks.
Hopefully no attacks today. Always my first hope of the day!
Thanks again Dave. My CT/Upper GI results get explained to me next Friday. Maybe they will have something for me. On a side note, I can say being injected with iodine was one of the more unpleasant physical feelings I have had. I was not allergic, but it did feel like my entire body was about 200 degrees.
Take care!
It is interesting that you brought up cardio. I have not had a EKG, stress test, etc. but was going to ask my doctor about getting those done at my next appointment. I certainly don't want to drop dead at 32. And I can't say what bloodwork has been done to date, I just know their have been hundreds of vials drawn and tested - all with normal results.
Stress and anxiety are players I think in some way. At the very least they make episodes worse because I focus on "how bad is it going to be this time". This is where my friends have told me to adopt Yoga or something similar though I do put in 30 minutes of exercise a day and my family keeps me busy!
Here are the mainstays of my acute attacks or my 90%-ers:
- Stomach is relatively empty (i.e. do not occur after meals)
- Starts as burning/cramping just under the sternum
- Pain grows to a little over 1.5" in diameter and builds quickly
- Pain radiates straight through to the back and then spreads out in straight lines towards my arms
- Antacids, PPI's, SSRI's, anti-spasmodics, anti-anxieties, nitro, ... all don't help
- Self-induced vomited does help and it feels to me that it is the contractions that help with the pain and not the evacuation of the stomach
- Pain is severe enough that I have to lay down or across an ottoman with a heating pad. Pain can last 4-6 hours and can occur multiple times in a day or have days between. I do have dull lingering pain after each attack. The onset of an attack can and does wake me at times during the night but the attacks can happen at any time during the day or night.
My blood pressure is 130/80 and pulse is normal.
My fear with Neurontin, though it is a very low dose (300mg/d versus some people being on 4800mg/d), is the sleepiness since I just came back from missing work due to sleep apnea. I was falling asleep at the wheel, at my desk, etc. First they thought Narcolepsy b/c of my age and I'm thin but sleep test showed OSA. I just finally came off using Ritalin which was helping me stay alert while I replenished the years of lost sleep through a sleeping machine. I feel rested now (finally!) and hated Ritalin and I'm fearful of things that can fatigue me on a continual basis, but like you said, I need to just tell my doctor my fears and why and then follow his lead b/c he could be right.
I will lay off the NSAIDs. You're right. Short-term gain could just mean more pain later. Tylenol just has never worked well for me for anything. That is probably why the Vicodin 5/500 doesn't help much for the attacks.
Hopefully no attacks today. Always my first hope of the day!
Thanks again Dave. My CT/Upper GI results get explained to me next Friday. Maybe they will have something for me. On a side note, I can say being injected with iodine was one of the more unpleasant physical feelings I have had. I was not allergic, but it did feel like my entire body was about 200 degrees.
Take care!
BrittleBones
03-11-2007, 10:48 PM
Just wondering....have you had your pancreas tested? This almost sounds like an acute attack of pancreatitis which can be extremely painful. I'm no doctor..but the symptoms sound like those of a relative of mine. She had pancreatitis. All the best and hope you feel better - KathyMac
MidlineNotFine
03-12-2007, 10:48 AM
Hello KM,
That was my worst fear when I first saw the doctor 2 years ago especially since my grandmother had pancreatic cancer in the 80's but the myriad tests thus far have come back fine. My enzyme levels are always good and the MRCP's didn't show anything. I thought the same thing though. My symptoms matched up well with gallstones and pancreatitis.
I get my CT results back this next Friday. Wish me luck. I had pain around 1 a.m. this morning but it subsided quickly for a change. I guess even my pain was tired from the time change!
Take care.
That was my worst fear when I first saw the doctor 2 years ago especially since my grandmother had pancreatic cancer in the 80's but the myriad tests thus far have come back fine. My enzyme levels are always good and the MRCP's didn't show anything. I thought the same thing though. My symptoms matched up well with gallstones and pancreatitis.
I get my CT results back this next Friday. Wish me luck. I had pain around 1 a.m. this morning but it subsided quickly for a change. I guess even my pain was tired from the time change!
Take care.