Hi all,

I need some help.  My son, Devin is 16 and has been suffering with early morning and nighttime headaches for about 4 years now.   His most common headache starts around 4-5 in the morning, always on his left side, there is a knot at the base of his skull that is kind of swollen where he says the headache starts-it goes from there to behind his left eyeHe appears congested, his left eyelid droops and his left eye waters, he also appears to have a more dilated pupil on the left side.  He will often breath in short deep breaths trying to get through the pain, almost like someone in childbirth.  He sometimes wakes at night with these and sometimes will get up in the morning and go from perfectly fine to absolute pain within a matter of minutes.  The symptoms that he has that don't sound like they are cluster related are vomiting usually before-occasionally after the headache starts.  He doesn't really care if where he goes is light or dark but he wants to be alone and wants to be away from any loud sounds.  He says it feels like being stabbed in the top of the head and his head feels bruised afterwards.  His headaches usually last around 3 to 4 hours, some have lasted longer.  They typically occur 2-3 x's a week but mostly stopped for a period of 3 months last fall.  He has used imitrex and maxalt.  He has also tried amitriptyline, noritriptyline and topamax as preventitives with no luck.  He is currently trying topamax again, he just started 1 week ago and has actually had more headaches than usual this past week.  He has seen a neurologist, but he was not a great help. Could these be cluster with that kind of frequency?

To complicate matters he has significant stomach problems, colitis, ulcers, gastritis and esophagitis.  He was diagnosed with an immune deficiency (primary) at 11 and the stomach problems are the result of that.  his doctors believe the headaches are a seperate problem so I am not sure if the vomiting is associated with migraine as he oftens has vomiting morning and nighttime over the last 18 months that could be attributed to solely GI problems. These vomiting episodes
appear also without headache, 4x's ending up in the ER with colitis.
  I've also wondered if he has more than one type of headache as some of them seem so severe and being a former migraine sufferer, nothing like any headache I've ever had before.  He is going for an
updated brain and spine MRI, last one done was 2006 with no irregularities.  He knows when he has a sinus infection, and CT's have shown no evidence of ongoing infection or polyps.

He is 5'11" 168 lbs, athletic, social, and all teenager.  These headaches are more of a problem than any other health issue he's had.  Any help would be greatly appreciated.  Any ideas or suggestions to try?

Thanks
Teresa

Hi !

I'm so sorry that Devin is suffering so.  

I am NOT a doctor but I have had CH since I was ten.  What you describe sounds a lot like CH to me.  As a child and younger person, I often vomited during or after an attack...... sometimes at high pain levels, I still do.  I also have a knot at the base of my skull that hurts during a hit.  I apply to it and it helps tremendously!

It is a really good thing that he is going in for updated tests.  It is always best to rule out other more serious disorders.  

Please keep us informed.  We really do care.

Hugs from one mom to another,

Jeannie

Hi Teresa,

It does sound like cluster to me as well.  If I were you, I'd push the doc for a prescription for oxygen therapy.  Make sure it is delivered through a regulator that will go higher than 8 litres per minute and get a non-rebreather mask as well.  Also, get him an ice bag - those gel packs that never really quite freeze are good and can be wrapped in a tea towel or cloth gift back so it's not such a shock to the skin.  Get him to put it right ON his cluster bump at time of attack (that's what my husband does and it really helps him to stay calm while he's sitting there using the oxygen.

I would think the stomach issues could be associated with the other gastric stuff you mentioned but it could also be the topomax.  It is rare for clusterheads to have stomach issues but not totally unheard of.  Sometimes, it's a reaction to the intense pain.  

Also - and this is a REAL touchy question to ask so please know that no offense is intended....any chance your son might be experimenting with pot?  It's a known trigger for a lot of clusterheads and he may not realize it.  Usage at his age is more common than uncommon - even if he is good in school and athletics.  Might be a subject to bring up anyway.

I'd sure keep pushing to get him to a doc who knows about clusters.  There's a list over in the buttons to the left here that list them  out by location.  Not all neuros are cluster-friendly so...buyer beware.

One last thing, you mention that there are some anomalies to the stereotypical cluster profile.  I think, because of his age, that's to be expected.  I think it takes awhile for the regular cluster pattern to establish itself and he's at the age when his hormones are all over the place and these monsters are hormone-driven, so it's very believable that your son's attacks are so unpredictable.

Keep digging, Mom -  you're doing a great job so far!  Keep it up!

Thank so much for your replies.  His main doctor now is an immunologist and we are looking for a good neurologist, I will check the list on this site.  I know his current doc will not prescribe oxygen only because he does not feel comfortable treating him for the headaches and would like him to see a neurologist.   My husband was able to bring him to his immuno's office with one of his headaches last Monday (Devin was miserable, in so much pain).  He finally saw how painful they are and he prescribed 650 mg Percocet which I don't want him to get in the habit of taking narcotics, but it helped ease the pain a bit.  I will definitely try the icepack on his neck.  We have taken him to several chiropractors and massage therapists with no progress.

No offense taken about the pot inquiry, I am not a mom who likes to have her head in the sand.  I know my son has tried pot a few times but it is not a regular thing.  These headaches started a little over 4 years ago and I think we were so busy looking for an infectious cause, we never thought they could be a seperate issue.  One other question I have is that he says nightmares often come on the same night of the headaches.  Is that anything anyone else has experienced?  I have no doubt stress and lack of sleep are also triggers.

Teresa

Hi, I'm Felicia and also 16. I've been supporting for my dad since I was 7. I can't say much about the meds because really, and I'll be the first to admit it, I really don't know much. But if he wants some one his own age to talk to or something, I'm always here to help. I'm always here for the cluster"kids" no matter what my schedual. Please feel free to message me or have him message me. Email and IM can easily be made avaible. Just wanted to say that and welcome home. We're always here and we understand. Hang tough my friend!

Broken

Teresa,  

You sound like such a good mom!   As said before, keep at it!

Narcotics are not generally good for CH.  I believe that use of them can actually, in the long run, cause more HAs.   Not to mention the risk of dependency.  

I often used to wake from nightmares with a HA.  I have come to believe that the nightmare is caused BY the HA.   Sometimes I am dreaming of having pain but then awaken to find that the pain is real.  I am sure that stress and lack of sleep are triggers.   As is MSG, bright lights, certain smells, peanut butter, and alcohol( for me... others have other triggers... alcohol seems pretty universal)

I know that Devin is young and I am not sure if it is appropriate to mention that several of us find relief by drinking an energy drink as fast as we can at the onset of an attack (hit).   Red Bull or any other energy drink that has caffeine and taurine in it helps.   I would not mention it except that my son has an occasional Red Bull and it doesn't hurt him...he is 16 too.  Heck, a Red Bull can't be as bad as Percocet and it may help as much or even more!

Please get him to a Neuro or HA specialist ASAP.  I hate to think of him suffering.

More hugs,

Jeannie

Edit to add:  Felicia, you are such a sweetheart!   This place is better because you are here!

Felicia, that is very kind offer that I will definitely share with Devin.  He is not one to share which worries me - I know it has to get to him but hopefully he will take you up on the offer.  That must be very hard on you helping your Dad.  A bad week for Devin can be exhausting.

Jeannie, I mentioned the energy drink to him to try the next time he awakens with a headache.  Any suggestions are greatly appreciated.  I did talk to him again about his nightmares.  He says he has alot of them and yes, he often has dreams of being tortured to awaken in pain.  I think also his nightmares occur frequently because he doesn't talk about his frustration and anger, not only with the headaches but with his other health issues.  He's pretty good at acknowledging feelings but not so good at talking about them.  I don't think that's all that unusual for his age but I worry about him so much. He is being referred to a pain clinic by the immunologist but I'm not sure if we should see a Neuro too or wait until after that appointment.  

I must say you are all very encouraging and helpful which is wonderful.  Thank you so much.

Teresa

Teresa,

Please push for a consult with a Neuro or HA specialist.  My fear is that a  pain clinic will just push narcotics at him.  I believe that it has happened here with some adults.  Also, continue to ask for the 02.  It must be at a high flow rate and through a non re breather mask.  I would certainly think that a doctor would feel more comfortable with prescribing the 02 than narcotics...maybe you could point that ou  

If you are not satisfied with what Devin's doctors are doing for him, keep pushing for a second opinion until you feel comfortable with with his care.  I have a situation with a child where I had to learn that the hard way.  ALWAYS trust your Mom's Intuition!

Keep us informed, please!  It is so hard to see our kids suffer.  Give yourself a hug for me! [smiley=hug.gif]

Jeannie

Hello Teresa - I am a ch'er, I'm a mum of a ch'er and I'm someone who has auto immune problems related to stomach issues too so have a great deal of commonalities for you!

I have a severe malabsorption problem and have had investigations for just about everything you can think of to no avail. What I do know with absolute certainty is that my stomach issues directly affect my ha's. Both CH and otherwise. You will need to find a headache specilaist neurologist, I can't stress that enough - and within that one who will work closely with a gastroenterologist/endocrinologist too to work out meds that are compatible for all conditions.

This is complicated as I've found the hard way that my options are drastically reduced because of drug contraindications.

On an up note - I can safely tell you that many of the excruciating ha's I have had are NOT CH - they resemble it but they aren't. That's good news because they're directly connected to stomach issues (chemical inbalances through malabsorption from vomiting and diarrhea) so although it hurts like hell, it's not permanent.. the things we find a comfort eh?!

I'm happy to talk about this further with you at any time and in greater depth than either of us probably want to go to on a website! You can contact me here via pm, via my email addy which is on my profile or we can talk on the phone if that helps. If you aend me your number and a time that suits I'll happily call you.

Best wishes
Helen

I sure hope Teresa comes back to let us know how Devin is doing!

Jeannie