Wednesday, January 22, 2014

Praying son does not get Cluster Headaches. as he has chronic migraines and tension headaches

A parents worst fear is that they inherit their diseases and ailments. IN last couple years my son now age 15 has been suffering chronic migraines and tension headaches.

It breaks my heart to see him suffer like this day and night non stop and like any parent with a brain cell wishes no pain upon their children and have asked god many times to take his pain and give it to me.

My son has Elhers Danlos Syndrome. Which in other words means he has about only 5% of collagen in his body. This is the stuff that keeps your joints together. Like glue. He was formerly diagnosed after many tests and doctors confirmed this disease. There is no cure. There are 4 types. He has type 1 which is the least of the 4. He has tripped and broken 3 fingers. He has elastic skin, and double jointed. He can spin his arm in a 360 and even go much farther. His skin is baby smooth and he can pull most parts of his skin 3-5 inches. His aortic valve on his heart has a slight leak and he may need heart surgery around age 20 to correct this. Common with EDS. He will also need glasses when he gets older. Another common trait. His joints constantly dislocate and he wears orthopedics now to help.
It is hereditary and we traced it back to his great great grandmother who just passed at 101. Unfortunately if he has any skin tears which he has had, it takes him 6 months to a year to heal opposed to days to weeks like me. He was mauled by a dog at age 5, and bit again by another dog a year or so ago and they took 6 months to heal and left bad scars.
My son also has Irritable Bowl Syndrome which also is inherited by me. He was also diagnosed with ADHD at an early age.
All this and add chronic migraines and tension headaches. Diagnosed last week or shall I say confirmed my fears. Migraines are common with EDS so it was almost inevitable he got them.
He recently lost another friend. This is now the 3rd death he has had to deal with in the last couple years. His buddy dropped dead playing soccer, his cousin  murdered and his friend now in a car accident. Also deals with school tests,girls, friends, work, hobbies. Kids got alot on his plate. We as his parents are doing the best to keep it balanced and healthy. For all he has gone through and lives with....we are immensely proud of him. If his teachers and friends only knew .

He is now being treated with a medication, he will be revisited by the pediatrician who specialised in children's headaches in 5 weeks.

The doctor asked what I wanted to know and him as well. I asked if he could get Cluster Headaches
Since there is 7 billion people world wide and clusters affect 0.01% and I am chronic, which is only 10% of the 0.01% which makes me one of 7000 people world wide, my sons chances of Clusters are very slim. And I pray to god he does not get Clusters. I do not wish Clusters on my worst enemy.

What I have found reading about clusters, migraines, and tension headaches is no formula is the same and no one is the same. Everyone has their own mix of meds, reactions and deals with the headaches inherently on their own differently. There is no cookie cutter headache or pill let alone person.

I personally have just run a 10 day migraine myself. Got an x ray on my neck as I believe that is the cause of my migraines. Adding cluster headaches at the same time has been a horrid experience to say the least. I also turned off my neurostimulator because it was making it worse. I see my neurosurgeon Monday. I hope to find out my results by Friday to find out why my neck hurts. Anyway. That is hear nor there. My main concern isn't me its my son.

Some tips the Dr asked is that he turns off the cell phone, i pad, computer, TV one hour prior to bed and read or relax. Its week two and he has had no results but she said it will take a month to see if things help.

Its a good idea anyway as kids now a days are inundated with social media, who said this and who did what. Good to give it a rest, get good sleep.

As I stated before. I pray for him not to get Clusters. Id give anything and even my life to prevent him from getting what I live with day in and day out. My son has been my reason for living, and fighting this disease. I am extremely proud of my boy. He is 15 and 1/2 cm shorter than me and no matter how big he gets. He will always be my little boy. Please send well wishes, prayers and support for my son.


  1. Hey, i have headaches 15 times a month, and i am not sure if its cluster or not, i am 21 and a talented musican and music producer, i try to handle the headaches and live a normal life, but its impossible. I have read this post, and it almost brought me to tears! I am a muslim, and i am very happy when i see that you have power to follow God with all the pain you experience! I pray that your son don't get Cluster Headaches and i wish all the best for him! Keep it strong!

  2. thank you very-much for sharing this kind of information. Now I am sharing a site where you find all the information of headaches