My son and has daily neuralgia or CH. He has been getting some form of headaches for 8 years after falling and hitting his head. They have changed forms and sometimes are only triggered by weather changes and do not occur daily but were still happening very often. Then suddenly they will change and become daily 2-3 times daily and sometimes almost continual as they have been this time since about the first of March when his doctor tried to change medications. That is when they started back full force and much more painful. He was given an occiptal nerve block which had no effect.


Our former neruologist said they were clusters and prescribed O2, which had little effect, but then he wouldn't wear the mask very long so we returned the tank after many attempts of trying to get him to wear the mask. He also prescribed lithium which we did not get filled because the headache doctor did not want him to take it. They used to be better when he moved around and he seemed very hyperactive during an attack. That has also changed over the years and now he moving around does not help them at all.

The headache specialist said they cannot be clusters because there is no tearing or droppy eyelid during the attack and they are not better when he moves around. He has prescribed various preventative meds the past 18 months without any reduction in frequency of neuralgia/headaches. He just started Verapamil and he takes 50mg/day of Topamax which has never helped much.

The pain doctor he sees has diagnosed him with supraorbital neuralgia and has used radiofrequency and Botox above the affected eye, which the headache doctor also recommended. Neither treatment has helped. We've given up on both those treatments, even though the pain doctor would like to repeat the Botox in a few weeks.

The other thing he and the headache doctor both recommend is a stimulator over the nerve, which I would rather not have to have done if there are better alternatives.

He also has a deviated septum which we are going to have straightened in a few weeks. The ENT doctor said it was a very good chance the surgery whould stop the nerve pain. The affected sinus is on the same side as the neuralgia/attacks. Also when he sprayed the lidocaine up his nostil during an attack, the pain completely went away for about 2 hours then returned later. The doctor said this was one diagnostic test for supporting the surgery he is planning to correct the deviation. However, he doesn't seem to get any relief from spraying the lidocaine solution up his nose or when he lays back and sprays the lidocaine. He also doesn't like using the lidocaine nasal spay.

He has also been diagnosed with adrenal insuffiency by means of an ACTH stimulation test. His GP said the test was given too soon after an occiptial nerve block using Kenalog steriod (two weeks later) so that test was not valid. He is sending us to another endocronologist for a second opinion and further tests. In the meantime he still takes a small dosage of cortef daily but it is not enough to help with the CH. He has taken prednisone in the past but now the headache doctor will not prescribe it anymore since he has the possible adrenal/pituitary problem. He said his endo needed to prescribe the steriods but she doesn't know much about CH or headaches so she isn't willing to prescribe the additional prednisone.

The headache doctor said, since it was his pituitary that was not working at the time of testing, than it is very possible he has a hypothalamus problem causing the nerve pain above his eye and is recommending an endocronoligst in another state who is more eperienced in this type of adrenal problem when it is from the hypothalamus.

He also has some neck issues and sees a chiropractor some.

I was reading about topical pain relievers for facial neuralgia. They can even make topical steriods and a topical neurotin formula. Has anyone tried anything topical for relief? The lidocaine patches do not seem to help but I was wondering if a topical lidocaine cream might work better.

The only thing that seems to help completely is the injectable Imitrex and we're having trouble getting that approved by our insurance. They just told me they would only approve 6 per month and now we cannot get any more of them for 81 days.

Now we are just trying to keep his pain under control as much as possible while we wait on the sinus surgery. He is not able to go to school so he is doing an on-line diaploma program. 

Dennis,
Normally he has had good summers with the attacks starting back when the weather changes in fall. This summer was different in that they did not subside or reduce in frequency. His GP 8 years ago, called them clusters and prescribed Elavil 6 years ago. He has taken Elavil 2 other times without any improvement.

The stimulator would not be any type of brain surgery and is fairly noninvasive. It would be placed over the nerve above his eye where he has the pain (supraorbital nerve).

I forgot to mention in my first post that he has vasalvagul snycope and tachycardia and has an appointment with a cardiologist in late Septemeber. I'm not sure if that is a factor in the neuralgia but it seemed to start this time about the time the cycle began in early March the headache doctor recommended a heart evaluation with a halter monitor test.

As far as meds, he has tried many various things over the years both from the former neurologist who treated him 5 years and then from the headache specialist he has seen for the past 18 months. None of the medications  have been very helpful and he usually has to stop them due to side effects.

The injectable imitrex is most effective but we are trying to find another alternative since they are so expensive.

As far as doctors go, I feel we now have some very good specialists. He no longer sees the neurologist that did not agree with the headache specialst so there would be no point in giving them each others phone numbers. We do still need to get the correct diagnosis about the endocrine problem.

He broke his nose when a soccer goal fell on his face while playing at school, when he was 8 years old. I'm not sure if that could have something to do with the neuralgia or not. They xrayed it and said there was nothing they could do, just let it heal naturally since it was not displaced. I'm just hoping the septaplasty will be helpful.
Pam

I don't think I'll convince him to try O2 again. I just returned the tank a few weeks ago. I kept for over a year even though I couldn't get him to use it hoping he would change his mind about it. He did try it several times but it might be that the HA was already too bad for it to work as it should have. He used it on the 8 setting as the doctor prescribed.

His headache doctor doesn't seem to feel there is a problem using the Imitrex with the syncope or he wouldn't have prescribed it knowing the situation. I take his BP fairly often when he is in a HA cycle, because of the syncope problems. When he is not in a cycle he doesn't seem to have syncope problems. so I feel they are related.

Do you know of a device called an alpha stimulator for headaches?

Like Dennis said- we aren't doctors so take my comments too for what its worth.

Some things that are consistant with  many that have  CH :
facial pain
sinus issues or what appear to be sinus issues ( Many CH get unneeded surgeries in the area)
eye pain
attacks 2-3 times a day but then sometimes or periods where no headaches occur ( cycles )
weather related pain ( for some not all)
neck pain  
immitrex injectibles provide relief to many CH- aborts mine in 3 -5 minutes

I don't really understand what your Headache Specialist  meant when he said your son couldn't have clusters because 'they don't get better when he moves around"   I am not sure that is clear indicator for clusters.   I only move around because I can't sit still because it hurts too much not to.  On the other hand , some folks report success in getting through the HA with vigorous exercise.  So not sure that is the bar for whether a person has Clusters-   Also-  my nose doesn't always run, just sometimes  and my eyelid doesn't always droop  - had more of the droopy eye this past cycle - but not everytime-  But I am darned sure I have Clusters -  Been diagnosed by 3 doctors!!!


I agree with Dennis too - that all of the doctors need to talk and work on the treatment plan together.  

It also sounds like you all are going in so many different directions that no wonder he has having a hard time getting better!!

How many mg of Verap did the doc prescribe?  Does the headache specialist have real experience treating someone with clusters?  Why did the HA specialist refer him to a pain management clinic? I am sort of confused as to how he got to all these doctors and why?

Also  I did the 8 lpm of o2- barely worked!!  No wonder he gave up!!   gotta be a much higher flow rate - see Potters recommendaton.  


Tough, complicated situation!  I can imagine how confused you and your son are!   Hang in there and stay with us

kelly

Kelly,
I'm not sure he did say moving around would make them better. He said people usually would rather be moving than staying still with them and that people always had either tearing or a droopy eye with them or nasal congestion. At this time he has the diagnosis of supraorbital neuralgia. I'm not sure if they are CH or neuralgia, but whatever it is - it is vey painful when it happens.

As far as other doctors, I agree with the headache specialist on that. My goal is find out why he is getting the HA and the cause instead of only treating the pain and giving him medications that are not working to prevent the HA. People with chronic pain are often referred to pain clinics, so I guess I don't understand why you would question his decision to do that.

He is not the first doctor who has recommended a pain clinic, but up until recently we had not gotten the appointment and actually taken  him. The pain doctor, who is very good,  tried botox injections and radiofrequency. He may implant a simulator over the nerve if the sinus surgery fails. That is the recommendation by both doctors, so it seems they do agree.

Thanks for the advice, but I'm the one who has watched him suffer for 8 years. We finally have a headache specialist who also wants to help him. That is why he sends us to other doctors. Most people tell me they would do the same thing if it were their son who was suffering with this.

pam wrote on Aug 19^th, 2008 at 9:29am:


No need to get pissy,  just try the oxygen the right way.  Just maybe...

     Potter

Kelly,
Sorry if I seemed defensive. I do appreciate your help and concern.

I really feel like we have some very good doctors presently and we will get the correct diagnosis. I have a good feeling the septoplasty will stop the neuralgia/HA. The ENT doctor was fairly sure it will help. They called yesterday and are able to do the surgery this Friday. I know some people have tried the sinus surgery only to find out it did no help, but there are those few who got complete relief from the correct surgery and he cleary has a deviated septum.

Skyhawk- He started getting daily headaches after a fall when he was 6. He is almost 15. Then at about age 8 they seemed to change to more intense stabbing type pain above one eye and happened twice a day. That is when he was referred to a neurologist and the diagnosis of CH, given the O2 tank, and given various anti seizure meds and some other pain medications which also did not help.

His attacks used to happen like clockwork everyday around 10:00am and then again at about 10:00pm. They were intense and very painful lasting about 1 1/2 hours or at night until he couldn't move around anymore and just fell asleep with the pain. He never woke up with them in the night. This was the pattern for about 2 years when they first started. Then they stopped for a period. He was almost headache free, except for an occasional migraine which was treatable with the usual HA meds and it would go away quiclkly.

Then they started back up and for about the past 4  years and  seemed to be triggered by nothing other than barametric pressure changes, which happens almost daily where I live so they were occuring frequently, sometimes everyday. Again, they were still a stabbing pain, very intense,  above his right eye on the eyebrow. They would last until around 2:00 everyday no matter what we did and he had no nausea or aura.

At that time they were diagnosed as migraines not CH. They would start up  in the fall but better during the summer months.Then he got a diagnosis of allergies because they started back in the fall. He's had allergy shots for years that did not change or alter the HA pattern in anyway so we stopped the shots.

Then they changed again this past March. He literally couldn't stand the pain. It was very painful above his right eye. We made several trips to the ER room in March. That is when his doctor sent him to a pain clinic. They are less frequent now and nasal imitrex or injectable imitrex helps but we don't use it everytime. Normally he wakes up okay but soon after he is up they start. I don't notice any type of pattern to them now. We are seeing the pain doctor today so I hope to ask about something topical for him to use for the neuralgia.

Very complicated story, and I'm sorry to hear that your son has been going through such pain (and other issues) since such a young age.

Some of the things are similar to my story.  I had a tumor under the skin on the side of my nose when I was 16 years old, and the surgery left the one side of my nose about 99% blocked.  I had never had a deviated septum before, but when I finally went to an ENT to look into all this back in 2005, he said that I had a deviated septum and a lot of scar tissue blocking on my nose and leading to a lot of sinus infections, congestion, and I thought an increase in headache problems.

Typically, sinus congestion is a symptom of clusters (and actually of migraine, too - though not really in the same way it is a symptom of CH).  However, even though the congestion is a symptom, I also felt that the congestion I was getting from the structural issues in my sinuses was ALSO triggering attacks.  So I had the surgery done in March of 2005, and then another surgery in April 2005 due to very late hemorrhage after the 1st surgery.  I felt absolutely miserable after the surgery, and it really was a rotten experience.  I don't think there is any way around having sinus surgery being a rotten experience, and it truly does take a long time to feel better from it.  I'd been told a year, but I never expected it to take that long to really feel like normal - but it was that amount of time!  After a year's time, I finally felt like I could breathe normally and wasn't having as many headaches triggered by sinus congestion.

UNFORTUNATELY, it didn't knock away the chronic migraine I've had since 2001 or the chronic CH's I've had since 2003.  That's because the sinus structural problems weren't actually the cause...

Now - neuralgia or CH is an interesting issue.  Neuralgia/neuritis implies some sort of nerve damage to his supraorbital nerve - which could very well have occurred from his fall.  CH affects the trigeminal (and supraorbital) nerves, but is not pain from damage - but rather a symptom of a series of things going on in the brain.  (The real cause is unknown, but there are various theories for what drives it...)

Turns out, nerve stimulation may actually be helpful for both neuralgia and CH - so if he truly has tried everything and gotten no relief, then perhaps the stimulation will help, regardless of if the problem is neuralgia or CH.  I actually have a bilateral occipital and right supraorbital nerve stimulator.  I went to the pain center for a trial of the stimulator - but that was the only reason I went to the pain center.  Otherwise I was managed entirely by my neurologist at the headache center, numerous specialists for other issues, and then the neurosurgeon is the one who sent me to the pain center for the stimulator trial.  I had a lot of success with the stimulation, and got my permanent stim implant on May 13 of this year.  Unfortunately, I am currently battling some issues with infection and the stimulator may ultimately have to come out and have a new one implanted in several months, but I must say it has truly helped my head pain.

What did the pain specialist say?  I saw he has tried occipital nerve block injections.  Has he tried a nerve block injection into the supraorbital nerve?  It isn't a definite indication of whether or not stimulation will work, but a lot of times the docs want to try that before stimulation.

Anyway - hope that you find some answers for him soon.  I guess you have to keep going through the various tests and specialists until all the pieces are put together.  I understand that, as I've been to all different specialists looking for the answer.

It is good to have hope about the procedures - including the upcoming septoplasty.  If it doesn't fix the problem, then you can keep searching - but it is always good to go into something with a positive attitude that it will help and work!

PF wishes and good luck!
Carrie