Hi everyone!  My son started having headaches on May 26.  He is 22 years old.  He has never even had a headache any other day of his life (that I know of anyway).  He went to the dentist and laid back in the chair to get his teeth cleaned.  BAM on came the headache, all the while with the bright light shining in his eyes.  For the next month, up until June 20, he seemed to get these headaches two or three days in a row, usually lasting two hours (at different times of the day but never when sleeping) and then have two days of only a slight headache.  His bad headaches were very characteristic of cluster headaches: behind the right eye, eyes turning red, congested, and begging me to take him to the emergency room, etc. 

After a trip to the ER (diagnosed with cluster headache) and then a visit to a neurologist on June 22 (again diagnosed with cluster headaches), these terrible headaches have passed.  He now gets mild headaches every so often though.

My question to the more experienced here is even though these were not "typical" cluster headaches (not at the same time, not every day, and never when sleeping), do you think from your experience that they were cluster headaches?  He is scheduled for an MRI of the brain and orbits tomorrow. 

As a little background, he is very involved in weightlifting.  Unfortunately, he was also taking "nitric oxide" (L-arginine) supplements like NOExplode, PlasmaJet, etc. along with creatine.  When this was brought up to the neurologist, he said that he doubted it had anything to do with it, but in a lot of studies online, there are theories that "excessive" nitric oxide can cause "migraines".  He was on this stuff for over a year. 

Also, while he was going through the "cluster" headaches, he also got a canker sore.  After searching, there is something in there about herpes simplex 1 causing headaches and infection.

Has anybody had any experience with supplement headaches or possibly headaches from an infection of some sort.  I am just concerned that because of the amount of pain he had and his symptoms which are very typical of cluster headaches that they may not be looking any further for other causes.  I live in a very, very rural area, and there are only two neurologists here, but we will travel if we have to.

I know a lot of people here were misdiagnosed in the beginning (under-diagnosed I should say).  I am just worried that the opposite is happening here and that there could be something else wrong.

I know you are not doctors and that I will have to seek the proper medical care for him.  I guess I am just looking to see if anybody here through their own experiences can offer advice or opinions.  Thanks!

A Worried Mom

Hi.

Good on you for coming to the right place for CH info!

My CH came on when I was 22. Never at night, and not always at the same time of day, behind the right eye.

The neurologist diagnosis sounds quite reasonable to me. The majority of us are episodics, and the episodes typically last one or two months or so every year or so.

Canker sore/infecton/supplements causing this? Sounds unlikely to me.

There are certain common triggers for an attack when in episode, alcohol being the most notorious.

Just to maybe ease your mind a bit, I was just riding the attacks out with no treatment at age 22 thru 25 or so, but now 30 years later I've had recent episodes where I've been able to prevent or abort every single attack before it has gone full blown/full length.

These things are treatable - but really good results are not so lilely if a patient just goes to doctor and only does what the doc says.

There is critical info and advice to be obtained here that the slowwwww to catch on medical profession hasn't caught onto yet, so let's get your son on here too, and get him prepared in case the CH beast comes back a knockin'. Let's make those ER trips history.

I'm so sorry for you as a supporter - watching your beloved son go through this.  And, I am even more sorry for your son having to go through this! 
Welcome!

As for whether these are CH, I don't know.  I can say that early in cycle the attacks may not correspond to a 'classic' outline.  They may settle down into a more predictable (well, as much as they will) pattern given time. 

I noticed that his first attack was end of May - now, over a month later, I very much hope that he is feeling better and has some O2 and is on a preventative. 

As for the herpes simplex I virus, generally I doubt that this is the issue.  People with an encephalitis from herpes simplex are generally SICK SICK people.  If, after a month, he's still walking and talking between headaches (when he likely rocking and cursing), then it is unlikely the herpes.  Likely he got the cold sore because his immune system is a bit down from the stress of his headaches.

You as a supporter gaining knowledge is the very best advocate that he can have - encourage him to learn all he can - to be trite, knowledge is power!   ;)

oh, sorry, one more thing.
About the supplements, haven't heard of them causing similar type headaches, but he does need to be careful of his kidney function.  These type supplements have been known to 'clog' kidneys and even potentially cause kidney failure...
Tell him to be careful!

Welcome mom.....can't imagine watching my girls go through this. They're 26 and 24 and I still hold my breath when they get a simple headache!

I'm 50, mine started about 18-19. It's only much later I realized they were clusters as they didn't have much of a pattern until my mid 20's, and I didn't ever have a wake up attack until my 40's! So yeah, for me it took them awhile to morph into full CH, with classic cycles and hit times.

I used to be a big time body builder. Supplements didn't bother me off cycle. On cycle creatine would guarantee me a major hit. Learned to lay off of it while on cycle.

Joe

Thanks for the welcome everyone.  The MRI was completely normal.  Well, he had his last horrible headache on June 19, but he has had what he is calling "pressure" on and off since then which is now two weeks.  We saw the neurologist on June 22 who had prescribed Verapamil starting at 160 mg/week, then 320 for a week, then 480.  He took two pills but they made him feel so awful and since he had skipped the two days that he was "supposed" to get the headaches (2-3 days on/2 days off), the doctor advised he go off for now.  Well, as far as the terrible headaches, he has not had one since before we saw the neurologist on June 22 but is still having this "pressure".  I am not sure what to make of this. 

So, now we go back to the neurologist on July 16 to review the "normal" MRI scan.  I am going to take some of the information from this forum with me so we can be prepared.  I just don't know what to expect of these now.  Do you think they are gone for now and what is this "pressure" feeling he has?  My heart just breaks for him when he has that terrible pain so I hope that it is gone.

Thank you!

My suspicion is the "pressure" he is describing is what many of us refer to as shadows. That feeling the beast is there, his claws are scratching, but they can't quite dig in. Doesn't feel like a regular tension headache, but like a CH that can't get off the ground. I use energy drinks and occasionaly "4Way Nasal Spray" sprayed up the nostril on the affected side to help with shadows.

Verapamil generally takes a while to become effective as a prevent. Doubt it was the few pills he took that chased the beast away.

Joe

Welcome to the board

my ch started at the end of august last year , very random hits none at night and with no particular pattern Doc started me on verapamil at 80mg per day made me feel dizzy shaky and numb even when he dropped me down to 40mg per day but I'm shore it did reduce the number and intensity of the hits.

as Joe says, the pressure your son is feeling is probably shadows , I find a can of red bull will usually see these off for a while.

my cycle finally stopped just before Christmas but I have been having shadows 5-6 times a day ever since.

one of the most important thing I have learnt here is that the beast is unpredictable and will always throe you a curve or two just to try and catch you out .

all that said you are in the best place with literally thousands of other sufferers and supporters who would bend over backwards to help you if they can. read read and read some more !

My thoughts and prayers are with both of you

Nigel