Discussions By Condition: I cannot get a diagnosis.

Persistent Headache, upper left quadrant abdominal pain and vomiting 2-3 times a day.

Posted In: I cannot get a diagnosis. 20 Replies
  • Posted By: laidbackmomto2
  • January 30, 2009
  • 05:33 AM

Hi, I'm Lindsey (posting under my mom's account - and edited by my mom) and I'm 12 years old. Since October of 2008, I have had a persistent headache (sometimes worse, but never goes away), persistent pain in my upper left quadrant of my abdomen that also never goes away and vomiting 2-3 times a day (although I have not lost any weight). I also experience fatigue, extreme at times, insomnia due to my headache and stomach pain, and periods of extreme sleepiness. No diarrhea or constipation and a normal, if somewhat depressed appetite. I've missed so much school this year that I'm not sure I will be able to complete it. Prior to this, I was a happy, healthy normal 12 year old.

Other occasional symptoms that I don't know if they are related: shortness of breath, heart palpitations (this only happened once or twice), numbness in my hands (about once a week) and excessive thirst.

Here's what's been done:

GP first did a urinalysis...negative. Was then refered to a pediatrician. He thought ovarian cyst and ordered an abdominal ultrasound...negative. Blood work...negative. He then thought migraine/IBS connection and tried low dose propranolol (beta blocker) and Nexium. When that did not help, did ECG and put me on low dose amitriptyline. Symptoms seemed to get worse not better, so we stopped this. He has stopped all meds and suggested seeing a psychologist and my mom has set me up for councilling.

Tried treatment by my mom's chiropractor - no help. Have also seen a naturopath who recommends activated charcoal and to eliminate wheat (gluten), dairy and sugar. Trying my best with that, but it's very hard! And so far (it's been a week), and nothing has changed.

Went back to my GP who refused a stool test, but ordered an abdominal x-ray. The day after the x-ray, went to ER as the abdominal pain was severe. They re-did blood work, urinalysis, bp, temp...all normal. They were able to review the x-ray as well...normal. Doctor suggested a stool sample for Giardia which we are in the process of "collecting"...yuck.

Anyone with something similar? Can't find anything in these forums that seem to match up. :confused:

Any help/suggestions would be appreciated.

Lindsey (and Cindy - aka Mom)

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20 Replies:

  • Why haven't you had a CT scan or MRI scan of your head?
    richard wayne2b 1232 Replies
    • January 30, 2009
    • 01:42 PM
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  • I agree with Richard! Try here: http://symptoms.wrongdiagnosis.com/cosymptoms/persistent-headache/vomiting-desc.htm
    aquila 1263 Replies
    • January 30, 2009
    • 05:43 PM
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  • Get your daughter tested for celiac disease. *Don't* follow a gluten free diet until this is done. Otherwise, the test may be a "false negative," i.e. she may really have the disease but the test won't show it. If she has celiac, it may take some time before gluten-free works, but it won't work at all if she doesn't have celiac disease. You really need expert advice on gluten-free diets as well. Not to knock naturopathy, but I would ask to see a dietician if celiac is found. They have years of training focused strictly on foods. A rare disease which presents as an "acute abdomen" (belly pain) in children is hereditary angioedema. Ask to have her C1 and C4 levels checked in blood tests. More here: www.haea.org
    aquila 1263 Replies
    • January 30, 2009
    • 08:43 PM
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  • Aquila,please tell me how you have so many sites at your fingertips!
    richard wayne2b 1232 Replies
    • January 30, 2009
    • 09:37 PM
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  • Thanks everyone. The doctors have been very reluctant to doing any further testing (hence no CT or MRI). That's the reason we went back to the GP after the pediatrician was turning my requests down for more testing. And the GP was no further help, refusing a stool sample (!) but authorizing an x-ray. I really believe they think it's all in her head and that she's trying to avoid school (she's never like going). I will read into celiac and angioedema and insist on the tests (and CT and/or MRI) at the next appointment. So I should take her off the diet now? She'll be ecstatic! :p And I will update as we go along...I hate reading these threads that just seem to die off without any conclusions... Thanks again, Cindy (aka Mom)
    laidbackmomto2 14 Replies
    • January 30, 2009
    • 10:21 PM
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  • Okay, I've read your posting and comments by the others. I will summarily comment here that you are extremely articulate for a young girl of only 12 years of age. It is uncommon for someone in this age range to be so familiar with medical terminology. Please describe the character of your headaches, ie where the pain is predominantly located, whether the pain shifts from one area to the next and if so, what areas? I would certainly concur that you and your parents need to request that the headaches be investigated further with imaging studies. When you say that your symptoms became worse after taking the amitriptyline, are you referring to all of your symptoms and if not, which ones became worse? Also, tell me about the pain in your abdomen and very importantly, tell me precisely what you feel and please refrain from medical terms such as upper left quadrant, but rather exactly where you feel the pain, is it dull, sharp, increase when you press on the area where the pain is located, do you also feel it in your back and when you say "depressed appetite," specifically what do you mean? Are there some things that bother you more than others or do you not feel hungry for anything much at all? You tend to reference your symptoms in terms of clinical jargon and this really doesn't help provide accurate information about exactly what is taking place. While it serves a purpose on physician records for a number of reasons, it should not be relied upon to best explain patient symptoms, okay? Best regards, J Cottle, MD
    JCottleMD 580 Replies
    • January 30, 2009
    • 11:47 PM
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  • Hi,Yeah you might want to get tested for celiac if you haven't already, but if that comes out negative you might want to stay on a gluten-free diet, in case its a gluten intolerance/sensitvitythere is a differenceim pretty sure im gluten senstive, AND IT ISNT THE SAME AS CELIAC DISEASE, though you can have both there's a specific test for gluten sensitivity im pretty sure, you might want to try thati've had almost all of your symptoms at one time or another, and im 15it took a while off gluten for me to begin to feel better, but i feel much better nowi was nauseous ALL THE TIME 24/7 before, and now im not anymorejust a guessthanks,twilight
    Anonymous 42789 Replies
    • January 31, 2009
    • 06:17 AM
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  • Okay, I've read your posting and comments by the others. I will summarily comment here that you are extremely articulate for a young girl of only 12 years of age. It is uncommon for someone in this age range to be so familiar with medical terminology. Sorry, that was my mom's edits...She's helping me with this one too. Please describe the character of your headaches, ie where the pain is predominantly located, whether the pain shifts from one area to the next and if so, what areas? I would certainly concur that you and your parents need to request that the headaches be investigated further with imaging studies. The pain is mostly at the front of my head above my right eye. It has sometimes been across my entire forehead and once or twice in the back of my head (as well as being above my right eye). It is just steady pain - not pounding. Asked to rate it on a scale from 1-10, I'd rate it a 7. When you say that your symptoms became worse after taking the amitriptyline, are you referring to all of your symptoms and if not, which ones became worse? My headache and the pain in my side seemed worse. My throat was really sore (my mom took me for a throat culture thinking maybe I came down with Strep - negative) and I was very dizzy (especially lying/sitting to standing). I also slept a lot more, but not at all rested when I woke up. Also, tell me about the pain in your abdomen and very importantly, tell me precisely what you feel and please refrain from medical terms such as upper left quadrant, but rather exactly where you feel the pain, is it dull, sharp, increase when you press on the area where the pain is located, do you also feel it in your back and when you say "depressed appetite," specifically what do you mean? Are there some things that bother you more than others or do you not feel hungry for anything much at all? The pain is on my right side in the front just below my ribs my ribs, sharp, hurts more with pressure and more when I sneeze or cough, and not at all in the back. Scale of 1-10, would be an 8. By "depressed appetite", I mean that often I'm just not hungry, not eating as much or as often as I normally would (even if it was pumpkin pie with whip cream being offered!). You tend to reference your symptoms in terms of clinical jargon and this really doesn't help provide accurate information about exactly what is taking place. While it serves a purpose on physician records for a number of reasons, it should not be relied upon to best explain patient symptoms, okay? Ok, sorry. Again, this was my "wannbe a doctor" mom :p The stool sample was submitted this weekend, so we'll see if that turns up anything. Test included Ova and Parasite and C&S (?? - not sure what that is, some sort of culture). Best regards, J Cottle, MD Thanks so much for responding. I hope the info might give you some further ideas.Lindseyand Cindy (aka Mom)
    laidbackmomto2 14 Replies
    • February 2, 2009
    • 00:21 AM
    • 0
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  • Okay, I've read your posting and comments by the others. I will summarily comment here that you are extremely articulate for a young girl of only 12 years of age. It is uncommon for someone in this age range to be so familiar with medical terminology. Sorry, that was my mom's edits (and she's helping with this one too). Please describe the character of your headaches, ie where the pain is predominantly located, whether the pain shifts from one area to the next and if so, what areas? I would certainly concur that you and your parents need to request that the headaches be investigated further with imaging studies. The pain is located in my forehead above my right eye. It has sometimes been across my entire forehead, and only once or twice have I felt it simultaneously in the back of my head on the same side. It is steady and constant, not pounding. On a scale from 1-10, I'd rate it a 7. When you say that your symptoms became worse after taking the amitriptyline, are you referring to all of your symptoms and if not, which ones became worse? My headache and stomach pain seemed to get worse. My throat was really sore (my mom even took me to the clinic to get a throat swab in case it was strep - negative). I was dizzy (especially from lying/sitting to standing) and I slept a lot more, but wasn't rested. I just all-around felt worse. Also, tell me about the pain in your abdomen and very importantly, tell me precisely what you feel and please refrain from medical terms such as upper left quadrant, but rather exactly where you feel the pain, is it dull, sharp, increase when you press on the area where the pain is located, do you also feel it in your back and when you say "depressed appetite," specifically what do you mean? Are there some things that bother you more than others or do you not feel hungry for anything much at all? The pain in my abdomen is at the front right side directly below my ribs. It is a sharp stabbing pain and increases when pressed, when I cough or sneeze. I don't feel it in the back. I'd rate the pain at an 8. "Depressed appetite" means that I just don't feel as hungry as I usually am for anything (even if it was pumpkin pie with whip cream that was being offered!). You tend to reference your symptoms in terms of clinical jargon and this really doesn't help provide accurate information about exactly what is taking place. While it serves a purpose on physician records for a number of reasons, it should not be relied upon to best explain patient symptoms, okay? Okay, sorry. That's my "wannabe a doctor" mom. :p The stool sample has been dropped off at the lab. They are testing for O&P (ova and parasite) and C&S (some kind of culture). Not sure when we'll hear back on that. I understand it can take a number of samples before anything might be found. Does anyone know what is required for gluten-intolerance testing or celiac disease? Mom will do some research on these. Best regards, J Cottle, MD Thanks for responding. Hopefully my answers might give you an idea?? Let me know if you want further info that I didn't give. Lindsey (and Cindy - aka Mom)
    laidbackmomto2 14 Replies
    • February 2, 2009
    • 02:08 PM
    • 0
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  • Bumping... It is definitely not Angioedema. The doctors don't believe it is celiac or wheat intolerence either as she is not having any diarrhea or constipation. The stomach pain is steady, not crampy and there are no further signs of allergic reaction such as rashes or swelling. I will be discussing CT and MRI with my doctor at the next appt. Thanks again for any input. Cindy (aka Mom)
    laidbackmomto2 14 Replies
    • February 3, 2009
    • 04:25 PM
    • 0
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  • Dear lindsey & CindyLooks to me that all your symptoms show that you are having glandular fever or medically called as infectious mononucleosis.............Do have a read and ask your doctor as wellfirefly
    Anonymous 42789 Replies
    • February 4, 2009
    • 03:00 PM
    • 0
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  • looks like you have got either glandular fever or acute porphyria...........do ask your doctor
    Anonymous 42789 Replies
    • February 4, 2009
    • 03:06 PM
    • 0
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  • Do you still have the headache?If so,it's time to demand a CT scan or MRI scan of your head!
    richard wayne2b 1232 Replies
    • February 4, 2009
    • 10:31 PM
    • 0
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  • I have had something similar. I'm 37 year old female. Started a while back, I was having gall bladder attacks, and Mr doctor just kept saying how high my Triclycerides were. I finally had an attach so bad it sent me to an emergency room where they did an ultrasound and took out my gallbladder. Within about a year I began having having issues with my menstrual cycle, where it kept getting longer and longer between periods. Then I had a period for a month straight. I was also getting white heads on my aeriolas. She diagnosed me with PCOS and put me on Metformin. I got bad diarrhea and severe headaches. Every couple of months I would go back and beg to be taken off of it and try something else, but she wouldn't listen. After a year I fired my doctor and tried using cinnamon instead. My symptoms seemed to go away for the most part, but I still had diarrhea frequently. Then after about a year of that, I started having abdominal pain. So bad I could no longer sleep on my stomach. The pains wasn't always in the same part of my abdomen. My abdomen started to become distended and hard while standing. I went to about a zillion doctors. I went to a repo endo who did an ultra sound of my ovaries and no cysts so he didn't think I ever had PCOS. I had an upper & lower GI. Stool samples, blood work. I began having more headaches. My eyes also seemed to be more sensitive, watering at the drop of a hat. The skin on my hands and feet are really dry. I have bad acne now, around my jawline, and when I can express them, all I get are clear liquid.(Research leads me to believe they might be MRSAs). I did have a doctor recommend probiotics for the diarrhea, and that has helped some. I seem to be constipated at the beginning of my mensrual cycle, and have diarrhea when I am ovulating. Now I ocassionally get a numb spot in the middle of my forehead. My PMS is insane, my back hurts like an 7-8. The kicker seems to be a constant brain fog. I can't concentrate and my memory fails me constantly.I would be happy for some fresh ideas.
    Anonymous 42789 Replies
    • February 5, 2009
    • 07:15 AM
    • 0
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  • Thanks for everyone's replies. Mono was my first suggestion to the pediatrician and I requested the ultrasound technician to have a look at her spleen. It was normal. I'm assuming that the ped checked for that in her initial blood work, but I really have my doubts with him (as I'll get into in a minute). Lindsey has had no fever throughout all of this. A sore throat (which we had swabbed for strep at the time), but no swollen glands as far as I could tell. I know that EBV can present in various ways, sometimes with little to no symptoms, so I thought it could likely be it. Her symptoms don't seem to be in line with acute porphyria, but I will read more on it. As for the CT scan or MRI, I unfortunately missed the call from my GP yesterday. In her message, she said she consulted the ped who believes that "no further testing is warranted". I can't believe he would abandon a patient like that! We are pursuing the psychological route, but I would think it prudent to continue investigating the physical aspect as well. I'm just so *****d with him. Anyway, my GP is out of the office for the rest of the week, so any further consultation will have to take place next week. Ugh. I am so torn up with my daughter's situation. Perhaps (in a moment of desperation) we will just take her to the Children's hospital ER and see what they will do. Cindy (aka Mom)
    laidbackmomto2 14 Replies
    • February 5, 2009
    • 06:38 PM
    • 0
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  • Cindy- sorry I come to this posts with more problems, not solutions. But, my wife, 21 years old, has had these exact symptoms since around November of last year. We've gone through probably all of the same tests, even an MRI, and nothing has shown up. At the end of April last month, we had to go to the ER because of the pain in her stomach. Turns our she had some internal bleeding and had to get emergency surgery. The problem is, they couldn't find the source of the bleeding, but the bleeding stopped. In all they took out about 16 oz of blood. Now, she's healed from the surgery and back to the headaches and stomach pain... The surgeon is now referring her to a GI specialist and is going to examine the GI tract to look for something. We should keep in touch here so we can learn from each other's Dr. visits.
    suspenderb 2 Replies Flag this Response
  • Cindy- Quick question: Before all of this started, did you have any dental work done, specificially did you have any silver fillings put in? If so, mercury poisioning could be the problem. Mercury still makes up 50% of most silver fillings. Mercury poisioning is hard to detect and diagnosis, but causes many symptoms, including all that you have. My wife researched this and had he filling replaced with a composite right away. We haven't seen any improvement, but I'm sure we're just like you, we'll try anything at this point.
    suspenderb 2 Replies Flag this Response
  • Hi, I'm Lindsey (posting under my mom's account - and edited by my mom) and I'm 12 years old. Since October of 2008, I have had a persistent headache (sometimes worse, but never goes away), persistent pain in my upper left quadrant of my abdomen that also never goes away and vomiting 2-3 times a day (although I have not lost any weight). I also experience fatigue, extreme at times, insomnia due to my headache and stomach pain, and periods of extreme sleepiness. No diarrhea or constipation and a normal, if somewhat depressed appetite. I've missed so much school this year that I'm not sure I will be able to complete it. Prior to this, I was a happy, healthy normal 12 year old. Other occasional symptoms that I don't know if they are related: shortness of breath, heart palpitations (this only happened once or twice), numbness in my hands (about once a week) and excessive thirst. Here's what's been done: GP first did a urinalysis...negative. Was then refered to a pediatrician. He thought ovarian cyst and ordered an abdominal ultrasound...negative. Blood work...negative. He then thought migraine/IBS connection and tried low dose propranolol (beta blocker) and Nexium. When that did not help, did ECG and put me on low dose amitriptyline. Symptoms seemed to get worse not better, so we stopped this. He has stopped all meds and suggested seeing a psychologist and my mom has set me up for councilling. Tried treatment by my mom's chiropractor - no help. Have also seen a naturopath who recommends activated charcoal and to eliminate wheat (gluten), dairy and sugar. Trying my best with that, but it's very hard! And so far (it's been a week), and nothing has changed. Went back to my GP who refused a stool test, but ordered an abdominal x-ray. The day after the x-ray, went to ER as the abdominal pain was severe. They re-did blood work, urinalysis, bp, temp...all normal. They were able to review the x-ray as well...normal. Doctor suggested a stool sample for Giardia which we are in the process of "collecting"...yuck. Anyone with something similar? Can't find anything in these forums that seem to match up. :confused: Any help/suggestions would be appreciated. Lindsey (and Cindy - aka Mom)[/quotei am sorry to hear that you have been going through so much with no results. i know how you feel, because i am almost 50 years old and have had the same problems of everyone posted on here. over the years i have had a hysterectomy, gallbladder removed and shingles for 4 years. the main thing that caught my eye while i was searching for an answer to my side pain (6 years) was the fact that you are 12, missing school because of these symptoms and having bouts of extreme sleepiness and fatigue. please look into narcolepsy. it hits pretty strong at puberty and can cause alot of problems for you while your body is fighting itself to stay awake. i hope that is not your problem, but it took 46 years before a dr finally diagnosed me with the problem that had plagued me since....forever. it gets worse as you get older and it seems each 10 years of age add more symptoms. hope this helps but like i said, i hope that is not your problem. hope you get results soon.
    TheNern 1 Replies
    • September 10, 2009
    • 05:24 AM
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  • Lindsey (and Cindy)......I know it's been a long time since you posted. I'm wondering how all of this ended up. My 16 yr old daughter is having very similar symptoms, lasting over the past 6 mos. any insights would be helpful. Thank you-Aleece
    Walleymom 1 Replies
    • October 7, 2013
    • 03:18 PM
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  • My daughter is also having the same issue and was wondering if Lindsey or Aleece found the cause or how are the managing the symptoms? ... MK
    Anonymous 1 Replies
    • August 18, 2016
    • 05:58 PM
    • 0
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