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Please Help Us Knock Out Constant Headaches!

I am the mother of a beautiful and wonderful 10 year old little girl named Lindsay who was diagnosed w both PSC and Ulcerative Colitis. I would do anything to help her with her health problems. i am fortunate that I am a stay at home mother and can help her with whatever she needs. I am constantly scouring the internet for new info (this site is my favorite by far!) and finding new doctors with new and different opinions. I am panicked and helpless and frustrated right now because she is feeling so terrible and I cannot help her. I also have a wonderful 12 year old son and loving husband who is the absolute best.

Here is a quick version of what happened to Lindsay

She got very sick with a mono-like virus 4 years ago at age 6. The doctors never really figured out what that illness was, but she missed the entire second half of the school year and has never been the same since. Her liver was affected and a yr later she was diagnosed w an autoimmune liver disease PSC. She was scoped at that time because it tends to go hand in hand w UC but there were no signs of UC. About a yr after that, we took her to NYC for a show and to a restaurant for her bday. My husband and Lindsay ended up getting really sick w food poisoning. His went away, hers never did but got worse and she ended up being diagnosed with UC a little over 2 yrs ago.

One of the questions I am hoping someone can help me with is about headaches.

Is there a connection between headaches and Ulcerative Colitis ???

Lindsay has had a constant daily headache that varies in intensity since she came down with the strange mono-like virus years ago. At first the doctors said the headache was from the virus. Then, when she finally recovered fromt the virus the doctors said it was from the liver problems not functioning correctly. There were no medications for a child w PSC. We found an integrative doctor who tested her for IGg food allergies. When we removed gluten, dairy, soy and egg her liver function suddenly went back to normal and has remained normal since we have kept her on the restricted diet. But her headaches still didnt clear up although they may have improved. The headaches got worse when the UC started so the doctors said it was related to UC. We were afraid to put our young child on any of the medications, so instead we do the SCD diet which is difficult at times but has worked wonders for her. She routinely has nice formed stool 1 -2 times a day except when she gets colds/viruses and if she gets very stressed out. She was slightly anemic which could have caused headache, but that was corrected. I have taken her to many neurologists – no pain relief medications are good for her because they can upset the liver and/or cause diarrhea. They do not even want her to have tylenol or ibuprofin. Does anyone else have any similar headache problem??? What can I do to help her??? We have tried accupuncture, myofacial and homeopathic remedies that haven’t helped. We are about to try biofeedback.

Her headache has been terrible lately – the worst ever. I took her to a new functional dr who wanted to do a stool test to see if she had any bad bacteria in her intestines. This part gets gross – sorry – but when I was taking the stool sample it looked like a nice formed log on the outside, but was shocked to see on the inside there was a lot of blood that I could see kindof swirled inside of it. Lindsay said she didnt realize because there was no blood when she wipes. But I have been looking at all her stool since, and i keep seeing blood swirled in the formed stool. I hear a lot of people with bloody diarrhea but does anyone else have blood in their formed stool??? I am afraid that Lindsay is not doing as well as we thought. We have an upcoming appt w her gastro, who I am sure is going to want to do another scope so I guess we will soon find out.

Please help us – all of your thoughts and ideas would be welcome!

Wanted to pass on a couple of things that have helped Lindsay in case they could help someone else. Definitely rotate some high quality probiotics since you really don’t know which one will work for you best. For Lindsay, during her initial UC flare, she took may probiotics without any noticeable changes. Then she took BioGaia L reuterri and immediately went from 10+ times diarrhea a day to just 2 times in the first day taking it and formed stool the day after. It was an amazing reaction and is a strain of probiotics not usually recommended for uc! Also,boswellia serrata has helped her. She doesn’t always take it except if diarrhea starts creeping in. She only takes as needed. It works great for internal inflammation!

written by Lynn

submitted in the colitis venting area

7 thoughts on “Please Help Us Knock Out Constant Headaches!”

  1. I also experienced very bad headaches. Mostly they were across my forehead in the morning while I was asleep and woke me up. I found I needed more water…dehydration. I have read that headaches and colitis are sometimes experienced together. With so much loss of fluid one needs lots of water and food…only what you can tolerate/digest at this moment..

    It took three years but now I am well eating the SCD way only. So try more water during the day and the food you can tolerate at this particular time..

  2. I get headaches a lot, and I think it’s the UC. Of course I can’t be sure, but I drink lots of water and they aren’t linked to stress – and not usually tiredness. Sometimes I can link them to bad bowel days, but not always, and I’ve not seen a pattern with diet. Of course they could be a side-effect of the drugs – and I’m on lots of drugs for the UC! They are keeping the UC reasonably controlled, but not the headaches, which have been as often as twice a week.

    Sometimes it’s an annoying distraction, sometimes a lie-in-bed pain, but the Gastro doc says no Asprin so where in the past I’d take a Nurofen or similar and a headache would be gone in an hour, these I am stuck with all day (Paracetemol does little for me). I’ve seen my GP who has little to offer (Cocodamol – if I want to be high as a kite?) but has tried drugs that are supposed to reduce reoccurring headaches – the first make me sleepy, the second is OK but not sure how beneficial yet. More drugs – not great! I should say I’m in the UK so prescriptions are cheap, and no incentive for the docs to prescribe.

    Sorry no answers there but will be interested in what others have experience. Regarding blood in stools – it’s not unusual with UC for the blood to be in the stools but not obvious, and not there when wiping.

  3. I also get headaches a lot. Usaly at least 3-4 times a week. Some of them can be horbil. I take Meds at night to help them but it dose not always work. I think it could be related to uc because think about it uc is a result of inflamation and head aces are also,just a diffint part of the body.

  4. Hi Lynn,
    My 22-year-old son also has UC and PSC, and has also had terrible headaches in the past. His UC also started after a food poisoning episode, by the way. His headaches were related to dehydration due to all the liquid he was losing through diarrhea. He now drinks 2-3 times the recommended 8-10 glasses of water per day, and has way fewer headaches.

  5. I had really bad headaches for a year or longer after I was anemic. Even when my haemoglobin was back up full.

    Try taurine for the liver, there are a few studies out there that say it’s great. I don’t have psc, but I’ve been taking it for years after I had high liver numbers and the doc was worried about the possibility of psc. I’m well within normal now, I take 4g per day but that’s probably too much for a child.

    Try a fecal transplant for the kid, taymount clinic in the UK does them. I did it at home, but it was a great help and I think the micro biome us at the core of a lot of these problems.

    I also occasionally take vsl#3 enemas and I’ve found them effective for the general shittyness that I feel(very subjective though).

    Best of luck, I hope your daughter gets better. I can’t imagine one of my nippers getting sick. It would break my heart.

  6. Hi Adam, not sure where the appropriate place is to leave this comment. How did you get past seeing blood in your stool/ or in the toilet. I have been on pentasa 4/500mg twice daily since November 21st 2015 and just now have noticed twice in a row, a bit of blood in the stool. Why is this? Other than that I have no weird syptoms. I am freaking out. Yes, I know I shouldn’t. Is bleeding here and there normal for colitis? Actually I have indeterminate colitis. My inflammation is patchy through out the entire colon.

  7. This info has been so helpful. I searched for “does ulcerative colitis cause headaches,” my daughter has had severe headaches since diagnos. With all this coronovirus, I wanted to make sure it wasn’t one of the main symptoms. I don’t believe my daughter would survive the virus. In which, we are taking every precaution that we can and I am always googling to see if there is something else I can do. I am still working. My daughter also has been diagnosed with PSC since November of 2017 and then too was checked for UC. Then March of this year, she was diagnosed with it. Our precautions are taking clothes off immediately upon arriving home and showering and of course keeping house clean, personal cleanliness – washing hands and not touching eyes, mouth or nose. Are there any other suggestions that anybody could recommend for protection.**** Back to the headaches, what causes them? I was thinking most likely due to food intake. Not malnutrition, but she still hasn’t got her appetite back. Of course we are doing the small meals. But too, when I am at work during the day, it is hard to get her to do what she is suppose to.

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