Does anyone here have children with PFAPA and/or Migraines?

Elizabeth - posted on 09/21/2009

My nephew is 7. He has suffered from migraines since he was about 6 months old as a result of meningacocle and menengitis c. He has a range of triggers from the weather to foods, loud noises and stress. He is on medication to control them, and even that doesn't work sometimes. He is usually out of it for a couple of days after. They have tried pretty much everything for him but because his are the result of an 'acquired brain injury' there's not much else that can be done. Your not alone. Hopefully something can be done for Sam to help. Good luck

Terry - posted on 09/20/2009

Our son started having migraines a couple of years ago after playing a season of touch football. What did help and continues to give him complete relief is having our Chiropractor put his neck and spine back in place. Ever since football when he's plays rough and gets knocked down he's gets another migraine (nausea, severe headache, eyes sensitive to light). I take him the Chiropractor ASAP and she adjusts his neck and spine back in place. POOF!! the migraine goes away. Hope this helps. Terry

Laura - posted on 09/15/2009

I have had migraines since I was around 10 or 11. I had to keep a log of everything I did and what I ate. Over the years, I have found out that I have to keep a certain level of caffine in my system or I will get a migraine. One trigger I found out that causes me to have migraines is if I eat too much peanuts or peanut products.



All I can do when I have migraines is take meds, go to my room and make sure it's dark and try to sleep it off.

User - posted on 09/13/2009

WOW!! I was relieved to read I'm not the only one, since about 10 years old I have suffered many forms of Migrane, I got glasses at 12 which seemed to help.

However when my hormones kicked in and I got my periods at about 17, then the problems began. Being extremely eractic with my cycle, I would get knocked down at least a few days per month, which seemed to lessen while Pregnant at 22,24, & 26, But they came back with avengence. I had a late pregnancy at 37 and again improved the severity of headaches, so must be hormonally linked somewhat. Many "sick" episodes, triggered by anything from Oranges, Coffee, Chocolate (not Cabury), Lack of sleep, Back and neck pain, Stress. Preludes are stuffing up my spelling , what I call Dyslexic attacks, talking back to front. Transposing the first letter form one word to another.

I've tried Imgran, Noten, Sandimigran, Topamax ( thought I had M.S. from the side effects).

The only real help seems to be at the onset, I take 3 Disprins in a half a glass of water EARLY!, if the pain, has already taken hold then a 1/4 of an Antihistamine, called Periactin, which I'm not sure whether it takes the migrane away or just knocks me out, so I sleep, then it leaves of it's own accord. Panandeine Forte etc don't seem to really work. The latest treatment which actually seems to have really made a difference is BOTOX injections accross my forehead and through my scalp, not for everyone , but hey it works for me!! So far so good, had a couple of bouts but no where near the normal severity.

La-Shonda - posted on 09/11/2009

if any one is interested in all natural way with supplements thatwill help I can send you some info

Martha - posted on 09/10/2009

Ihave had migraines since I was about 11. They used to be really severe with vomiting and lasted for days. I would just have to go to bed in a dark quiet room and try not to breathe too hard because it hurt so much. I have 2 children, grown now, who also suffer them. One daughter has had some relief from a chiropractor, for a number of years, but recently they have come back. I always use a hot pack on my face and it seems to help

Dianne - posted on 09/10/2009

i have a daughter who suffers migraines of the stomach she has loads of pain she takes pain killers she now neally 18years old

Melanie - posted on 09/10/2009

Hi, my son has migraines every few months from the time he was maybe 5 until he was 7, and hasn't had one since then, but he does still get headaches. I took him into the dr to check for a few possible causes, such as allergies, anemia, or diabetic issues, as all of these run in my family, as does epilipsy. I get migraines off and on, but mostly due to hormonal flux's, allergies, or stress. But the thing that helped my son the most, was we found he was anemic, and treat him with herbal iron supliments, and when he is really low, iron tablets from the pharmacy. His migraines stopped completely! He does still have low iron level days, where he isn't well but "just doesn't know" what is wrong. And will often get a headache on those days...but I boost his iron intake and in a couple days he is fine, no migraine. It really was a godsend to find this info and help for him. As his last migraine was so bad I wasn't sure if he was having a seizure or a stroke!! I also found out a number of allergies that I hadn't realized were there, and know things like preservatives, and food colorings and flavorings are pretty hard on him, and can often cause a headache or migraine... so far he has never needed medication other than some while he HAD a migraine, and treating the anemia has more or less stopped them from coming back. I hope you find what helps your child very soon, and wish you both well :)

Karen - posted on 09/10/2009

hi my daughter who ios 11 started having them recently and was being sent home from school as she was sick feeling faint etc. i put it down to stress as she was in the middle of doing her sats tests .

Karen - posted on 09/10/2009

Post a reply!i have a son of 12yrs old that has been suffering from terrible migraines for a good couple of years now.

Susan - posted on 09/09/2009

If anyone is having headaches accompanied by vomiting, please see a doctor as soon as possible - no drags off the counter!!!! My sister had these kind of headaches and ended up being diagnized with a brain tumor. Luckily, it was removed and she is well.

Cynthia - posted on 09/09/2009

My son and I both have migraines. I started having them when I was a teen, my son on the other hand started when he was around 3 yrs. old. I am now taking something daily prescribed by my doctor. Not only do I have just the migraines that comes every 3 to 4 months lasting 3 to 4 days but now I have pick migraines that comes everyday, sometimes up to 10 times a day. My son has had many test done and doctor's say the same thing as most of the posts on here. So when the triggers come, meds, dark cool room and quietness.

Robin - posted on 09/08/2009

I don't know what PFAPA is...but I do know that when I first started having mine headaches we called them "sick headaches" because they did not follow the "typical" migraine pattern....but I would throw up with mine EVERYTIME....NOT FUN! I know how Sam feels!!!! It was like that until I was in my early 40's and then they started following the more "typical" patterns and I don't throw up every time anymore....

Robin - posted on 09/08/2009

Hope I helped a bit....just know that you are NOT alone!!!!

Robin - posted on 09/08/2009

She took Topamax and even though it is a "seizure" medication, my daughter had spells that I would call seizures even if the doctor was reluctant to agree...all he would say was, "It's suppose to STOP seizure. It should CAUSE them...." and then scratch his head...when you first start taking it, it causes tingling in the hands and feet and it can cause a lack of appetite....My daughter also took another type (can't remember the name) that caused hallucinations....but then she and I have strange reactions to some medications that no one else seems to experience.... When Suni was first diagnosed she was in the 2nd grade and she had what appeared to be a 4 month headache.... before the pressure from one headache was gone the next would hit...We still don't know all of our triggers....foods, allergies, chemicals, stress...all of these contribute to migraines...foods such as chocolate, cheeses, wheat products, additives such as MSG... allergies such as molds, dust, pollen, foods...etc... chemicals, such as me being sensitive to perfumes, some cleaning supplies and pesticides...There are soooo many contributing factors you may never find them all....but it helps a LOT to find the worst ones!!!! I will be praying for you and your son. I KNOW the frustration you are going through!

Bridget - posted on 09/08/2009

But Sam gets a headache bad enough to make him throw up everyday.. Cat scan and MRI are normal... I am wondering if PFAPA has anything to do with it. his immunologist says no!!

Bridget - posted on 09/08/2009

I have not found any triggers with Sam.. He has them at all different times during the day. At school at home, eating not eating, sleeping 10 hrs, sleeping 8hrs... I have no idea!! What preventives was she on and what were the side effects? If you do not mind!

Robin - posted on 09/03/2009

WOW do I identify with all of this!!!! I have had migraines since I was 5 or 6 and my daughter has had them since she was 7....
Mine just have to run their course NOTHING helps them and if it does it is only temporary and comes right back to run it's course anyway! So why bother.....My daughter and I were both on preventative until she started having some really disturbing side effects...Triggers? OH YES!!!! and we don't even know them all.

Brandi - posted on 09/02/2009

My son who is now 15, and I both suffer from Migraines. When he was younger we went to several Dr's trying to find out what to do for him. Eventually they told us to watch his processed food intake. I was really sceptical and didn't think anything of it, but the more I paid attention to what he was eating the more I realized that it would be worth a try. We've recognized that it is definitely triggered by to many processed foods and heat. He plays football, so the heat thing kinda causes a problem, but we really try and keep away from the processed foods. He hasn't suffered a Migraine in several months!!!

Dawn - posted on 09/01/2009

I use to get them when I was a child. Stress and chocolate were my triggers. You can start a log book on everything he/she eats and what the child's mood is and might be able to figure out the trigger. Thats how we found mine. Thank God that the chocolate thing was something that I was able to out grow!!!

Jill - posted on 09/01/2009

My son and I both get migraines very regularly. We both have many triggers...food, lack of sleep, weather...

I'm on preventive but my son only takes something when he actually has one.

Meds, dark quiet cool room...usually are what's needed the most.

Stacey - posted on 09/01/2009

I don't know how you feel about chiropractors - but even as a last resort - a good one may be your answer. If you're not sure do some research online and see what a chiropractic website can offer up as far as what they can help with. I have my kids adjusted. I suffered w/migraines myself for almost 20 yrs, (starting in my teens) 2/3 days every other week. And I get a headache now only because of hormonal fluctuations once a month. Sometimes its just as simple as our spine being out of alignment. Hope it helps!

Sharon - posted on 09/01/2009

My daughter was just diagnosed with migraines - she's 7. She goes for an ekg soon for more research.

Beth - posted on 09/01/2009

Yes, my daughter who is 9 now, has been having migraines since she was 4. She usually gets them every 3 months for about 4 days. They are starting to change in frequency. However, she still gets nausea, vomiting, dizziness, and a throbing headache.