Diagnosed with neuralgia from cat scan in 88 from neurologist.  Family dr. and new neurolgist say cluster headaches. So what is it and is there even a difference in treatment?  As I try everything, they still go away in time, so how can you tell if neurontin, water, coffee, coffee paste in the gum area, aspirin in the gum area, cholaseptic in the gum area, dialantin, ergostat, axert, relpax, tegretol, ice on the eye, heat on the eye, avoiding any activity your mind thinks brought it on, avoiding family members that are able to stress me, HOW CAN YOU TELL???? It lasts so long, then it's gone over a few months then comes back in a year or so. My best achievement is getting it down to 30 min.= by chance or all the crazy remedies I've tried??? IN the last 6 months I had to have lumbar surgery on L4-5 and cervical disc fusion on C5-6. Did all that pain rewake the brain to start the neuralgia of face back in???? I thought the pain pills for surgery started it and limited them to so less that the surgery pain is unbearable with it combined. Now they want me to start verapamil- which lowers blood pressure and my blood pressure is normal-I'm afraid to start it-can it kill me??

Welcome!

Verapamil has helped many here......and as far as I know it hasn't killed anyone. Some have problems with side effects, but you can have that with any drug.

Best abortive I know is O2. Take a few and read the O2 page @ START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Also, I have learned through the years that I absolutely cannot use an electric toothbrush or liquid mouthwash. In anytime of remission-those would start it in undoubtedly.

Neurologist said he'd give me 02, but on phone nurse called in veralapamil, I got scared because blood pressure is normal, but do feel pulse in my face while it is going on.

Get the O2 and give the verapamil a try if your doc recommends it.

Quote:

I absolutely cannot use an electric toothbrush

Trigeminal neuralgia?

There is no absolute way of knowing what med will/how affect you--BUT--we can tune into medical studies which give us some data on effectiveness, etc.

What is not helpful is to play around--adding & dropping--meds, behaviors, etc. in a self-directed experiment to determine what is helpful (or not). Without some degree over control over what you are using/doing, dose, duration, etc. there is simply no way of concluding what is working for you. It's really important to work with your doc in making changes so that his medical guidance/experience/knowledge can be used to your benefit.

Re. Verapamil: it's about our oldest preventive (not abortive) med, has a excellent track record for effectiveness and safety. For most people, it's not an especially potent med. re. blood pressure and it's uncommon for people, even on high doses for CH, to have to stop using it because of too low BP. 

See PDF file, below.

---

What Bob said! Stop, take a deep breath, and let's work on long term control. There is't a single pill you can take to cure these things. They'll show up once or twice a year, anywhere from 4-16 weeks at a time, then they go away. Understanding that....

1: work on finding a prevent med that works for you. One you take daily to reduce the number and intensity of your hits. Verapamil has a great track record but takes up to 10 days to begin showing results. Many go on a prednisone taper to block the attacks during those 10 days. My prevent is lithium, once it's in my system it'll block up to 70% of my attacks.

2: A good abortive strategy, the attack is starting now what? Your first abortive should be oxygen. Read the oxygen info link on the left as it must be used correctly. I can halt an attack in less then 10 minutes huffing 02. Imitrex injectables are effecive but are expensive, many have had success with imitrex nasal spray.

Keep some energy drinks around while on cycle, Monster, Rock Star, Red Bull, any containing caffeine and taurine, many can abort or reduce an attack by chugging one of them.

The good news is they will NOT kill you. They require a coordinated effort to manage them. Knowledge is your best friend. Glad you found us.

Joe

Thanks so much, everyone for the advice.

Bob P wrote on May 25^th, 2010 at 8:17am:

Trigeminal neuralgia?

Yes, my thoughts exactly when I read about the toothbrush. That is a typical sign of 'trigeminal neuralgia' and suggests that the diagnosis should be reconsidered, and that indomethacin might be a good treatment to try. On the other hand, cluster headaches are a form of pain of the trigeminal nerve and are by definition a 'trigeminal neuralgia,' even if they are called something else (the international definitions and criteria have some unproven assumptions and overlap built into them). Some clusterheads are triggered by bright light, or have involvement of nerves in the jaw ... not typical, but definitely possible. Sometimes a spread of allied reflex can trigger clusters.

Bob P wrote on May 25^th, 2010 at 8:17am:

Quote: I absolutely cannot use an electric toothbrush Trigeminal neuralgia?

now whats the difference between that and what we have?

Now that's the million dollar question! I have half the symptoms of TM and half the symptoms of cluster headaches. First neurologist diagnosed as a neuralgia but not trigeminal, next Dr. said it was cluster headaches. Leave it to me to be different. I was afraid to start new med verapamil-so I got old meds out and took a Neurontin 300mg. last night. It eased the shadow pain, pressure in my face and I did not have an attack last night after 3 the night before. I am thankful for the relief!!!! Hope it lasts! Sometimes neurontin doesn't help me.

Diagnosing either condition can be tricky business.

Does Trigeminal neuralgia respond well to indomethacin?  I'd think that could potentially be a helpful diagnostic tool.

from what i read here
neurosurgical university of patras

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it says Trigeminal neuralgia is caused due to demyelination,the small nerves losing their myelin like the electrical wires losing their insulation and as a result a signal gets spreaded through more nerves
and the brain gets multiple signals which are being percepted as the pain of the trigeminal nerve.
those multiple signals can be reduced with the use of tegretol or neurontin.it also says that Trigeminal neuralgia might leave a permanent burning sensation in the side of the face.(it hasn't been updated since 2008 and not to be taken for granted anyway as any reading must be double checked with more sources)

i also remember from somewhere else i was probably reading about, it is extreme pain and it lasts less than two minutes?
does this mean it has no shadows?no time to abort as in two or even few more min its too short time anyway?
a complete different situation from ch as time here is the key and the parasympathetic system doesn't get affected?(droopy eye,tears,stuffy nose?)
I am with your Family dr. and that new neurologist.
i mean ok i am not a doctor but  indomethacin is supposed to help with paroxysmal imigrania and helps with the differencial diagnosis from ch as there are many similarities.
whats the similar for ch and trigeminal neuralgia that bothers them to diagnose properly and leave it up to you?shadows for ch and trigeminal neuralgia is the same?i think is a completely different nature of what we call shadows

does ch include this demyelination in any level?Now that is a question i would like to know

some random thoughts probably wrong but what a mess!
welcome and stay strong (and read,read and read)
pf wishes :)

I have had CH for over 30 years and in the early days the last resort was morphine but that only dulled the pain but did not stop it. I was once confined to my home for a week and could barley stand. Thank goodness for Imitrex, first came the injection than the nasal spray, both work and the nasal spray is convenient, but the post nasal drip is awful. I also take half of a 50mg tablet at bedtime to get me through the night when headaches are active. Thank goodness for oxygen because the insurance companies have cut way back on the Imitrex they will pay for, I have actually paid the full price ($150 ) several years back to get more than the insurance company would allow per day. Once my headaches have ended their cycle I now stock up on Imitrex for the next round. I have never heard of anyone dying from a cluster headache but wish I had on more than one occasion due to these @*!* things.

Diamond Lucidity wrote on May 25^th, 2010 at 1:16am:

I thought the pain pills for surgery started it and limited them to so less that the surgery pain is unbearable with it combined. Now they want me to start verapamil- which lowers blood pressure and my blood pressure is normal-I'm afraid to start it-can it kill me??

First real bad attack I had they put me on Vicadin.  It didn't work, and I was in a lot of pain, but I was happy at least.  As far as it being a killer, no, not really, but, in many cases, you'd wish you were dead. ;)

djphrenzy wrote on May 26^th, 2010 at 12:35pm:

Does Trigeminal neuralgia respond well to indomethacin?  I'd think that could potentially be a helpful diagnostic tool.

In practice, many use an indomethacin test to distinguish TN from other conditions. Indomethacin response is not part of the official diagnostic criteria.

Classic Trigeminal tends to occur more frequently, and is shorter in duration, and can be set off by brushing the teeth or combing the hair. 

In clusters, the pain is in the trigeminal nerve behind the eye. That nerve bundle shows uncontrolled activity that seem to be initiated by the hypothalamus (hence the seasonal and circadian patterns), although other nearby nerves can also feed into the trigeminal and make it irritated and ready to fire at what would normally be minor stresses. And it works the other way - when the the trigeminal nerve screams, it can overload other nerves and refer pain anywhere on the head or down the neck. 

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Demyelination might be more important or typical in classic trigeminal than in clusters, but it could be a factor in some cases of clusters... anything that sends the wrong nerve signals to the trigeminal (or which interferes with the good nerve signals) can overload it an make it prone to fritzing out, with painful results.  I have mentioned that I was in remission for about 6 years, and went back in cycle after vomitting and having it come up through my nose - not sure if the stomach acid caused demyelination or a more general injury to the sinuses .. but not to my hypothalamus. The timing of that episode was highly unusual for me, as my previous decades of clusters were always at the same time of year (late July, August, sometimes september-october) but the other cycle started in spring, two days after the vomitting.

2nd day of Neurontin I had the worst attack ever and lasting longer than usual. I knew it hadn't worked in the past for me. So I braved up and started verapamil next day. Going to try to stick with it and give it a good try. I feel very slowed down and tired after 2 days, but haven't had an attack. Felt like I started to in middle of the night, woke up from a bad dream and felt like the beginning, but I tried to sleep sitting up the rest of the night and it did'nt develop. I was so afraid to start the new med and glad I found this site. Thanks again.

Verapamil can take 10-14 days to build up to therapeutic levels in our bodies, so don't get too discouraged at the outset if you continue to get hit.

Verapamil has been very sucesful for many on the board, hope it works as well for you. Add a lot of fruit and fiber to your diet as one of its side effects is it'll plug you up a bit. :-/

Joe

It is possible to have both.

It's possible to be blessed with multiple headache types like myself and a few others.

there is no one thing that works for everything but there are some options to treat one headache type that will help others.

CH seems to be one headache type that differs from the 600+ others.

Anyway, you could have TM and that most likely will be responsive to indomethacin where the CH won't.

It is most important to find a dr. that is an expert in the treatment of headache. the dr. should be able to pick them apart and help treat you properly.

good luck