Idiopathic Stabbing Headache. So far, this is what the doctors think I have. Here's the story.
A few weeks ago, I began having sharp pains of varying degree on the right side on my head. On is important. It's not in my head, like a typical headache. This pain would come on without warning and always originated in the same spot. It lasted for 1 second and then went away. No lingering effects. It would be every 1-3 minutes. It would be every 30 minutes or any time between. Totally random, but always on my right side, on my scalp, just above my ear. The pain felt like everything from being flicked in the head to being hit with a rock from a sling shot. Some were bad enough to make me flinch. I just sucked it up for a day.
That night, I had no pains while I slept.
The next day, after 15 minutes of being awake, the pains came back. They were the same as the day before. I went to an urgent care facility. They checked my vitals, looked at my head and gave me some basic motor skills tests. Everything looked good. We discussed my scars.
I have a few scars on my head. Sixteen years ago, I was in a pretty bad car wreck. Some friends and I were off-roading and flipped a Chevy Blazer. The cops estimate we were doing 60+mph and flipped 9 times, after going air born the first time. Sometime during the flipping... and bouncing... and rolling, I busted out a window with my head and was ejected from the Blazer. Cops estimate I slid 30 yards before crashing into some Cypress trees, possibly head first. It took my buddies a few minutes to find me there in the darkness of a Louisiana swamp. How they found me was falling the sound of me cursing and screaming. I was conscious and livid. And drunk off my ass, thankfully. I'm sure it would have hurt worse if I was sober. We were all drunk. Turns out drinking and riding with a drunk is no safer than drinking and driving. Anyway. One of my buddies walked a few miles to a gas station, covered in blood. Some his. Some mine. I took the ambulance over 30 minutes to get to us. And by get to us, I mean to where we walked to. No vehicle was getting to where we landed. I was conscious the whole time and knew what was going on, mostly. I was treated and released that night from the hospital. A dozen or so stitches in my head and hands, bruises and a concussion. No broken or fractured bones. Later check-ups showed no outward signs of brain damage.
The urgent care facility gave me Vicodin for the pain and said to see a general practitioner doctor for further treatment if the pain kept up. It kept up. But only while I was awake. The pain shuts off while I sleep.
A few days later and still hurting, the Vicodin only dulled the pain, I went to a doctor. More vitals and motor skills tests. Everything looked fine. She gave me Ibroprophin 800mg and said to give it a few days.
A few days later and all the while in the same shape, I went back to the doctor. Same clinic, different doctor. He did the same tests and suggested it could be Trigeminal Neuralgia. I'd need an MRI to tell more, but many of my symptoms pointed to TN. Pain in the scalp always in the same spot. Lasting 1 second. Random times. No other symptoms but the pain. Shuts off while sleeping. Their were a few symptoms missing though. No touch triggers and no facial pain. I can wear a full face motorcycle helmet and not trigger pain. TN often has a touch trigger where touching a part of your scalp or face causes the pain. He gave me some steroid pills and Neurontin. Neurontin is $103 for a month supply. Good thing I have insurance. $2 for me.
The Neurontin worked. A few hours after taking the first pill I had no more pains. It's looking more and more like TN.
So I get an MRI. They ain't cheap either. Even with insurance it was $800. Without insurance it would have been $1,200+. Mine was with and without contrast. This means they took one scan with no dye and one with a dye they injected into my arm. The dye highlights blood vessels.
The MRI showed two small white spots near where the pain originates. White spots can be a sign of Muscular Dystrophy. My doctor said it was very unlikely and sent me to a neurologist.
The neurologist checked me out in much the same manner as the other doctors. My motor skills are fine. This is good news. Poor motor skills can indicate neurological problems. He says the white spots are scar tissue from the wreck I told y'all about earlier. I should have had an MRI soon after that to see if their was damage. He said the doctors then probably didn't do it because I had no skull fractures, didn't loose consciousness even while drunk and never showed any outward signs of trouble later on. The scar tissue, he says, is not causing the pain. My nerves look fine and no blood vessels are touching the trigeminal nerve. It's looking less and less like TN now.
What it is looking like is Idiopathic Stabbing Headache. Good news, bad news.
Good news is that it's not life threatening. It's also not likely to become debilitating like TN can. TN can cause the kind of pain that stops one from being able to function normally. My ISH is of varying degree. At best it's a nuisance. At worst, like the day I left work early, well, it's not the kind of pain I could brush off for very long. Having a pain like being hit in the head with a rock fired from a slingshot every 1-3 minutes really sucks. ISH is also manageable with Neurontin (Gabapentin) and side effects are not too common or too bad, usually. Even less so at 300mg or lower and taken 2 times per day. I'm at 300mg twice a day. I started at 3 times. No pain with twice a day, so I'm staying there for now. ISH can also go away. Just... go away. Sometimes it stays gone. So far, there are no touch or environmental triggers. I can move any way I want to, pick up heavy objects and bright lights or loud noise doesn't trigger an attack.
Bad news is that Idiopathic means "Of unknown cause." They don't really know what's wrong with me. Go ahead. Make jokes. I do. I told work that I was so smart I was growing an extra brain and these were growing pains. Work said that after checking my head, they found nothing. My buddy said he's been trying to figure out just what the hell my problem is for years, so it's no surprise a doctor couldn't tell in few days. Yeah, yeah. The sympathy is overwhelming. Anyway, there is no cure for ISH. If it does go away, it may come back. Maybe for a few minutes. A few days. A few months. A few years. It's the roulette of headaches. If it does go away and come back, it's also likely to last for longer periods as I get older. And that's if it even goes away at all. ISH and TN are often misdiagnosed. One is mistaken for the other. Either way, Neurontin is the best medicine for it. It sure would be nice to know exactly what's wrong with me.
Well, that's been the past 3 weeks of my life. How you doin'?
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My husband has had these. He used to have attacks quit frequently but they seemed to have disappeared... They used to come on randomly and scared the beejeebies out of him, during their onset.
Not sure what to tell you...as long as they are not life threatening and you understand their source (sort of), you should at least feel better... OUCH!
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"All things are our relatives; what we do to everything, we do to ourselves. All is really ONE." Lakota leader Black Elk
Idiopathic means that knowbody knows the reason of this pain and what it influences on. According to simptoms it looks like inflamation of nerve (I don't know how "troynichny" in English). It is almost incurable. Maybe because this illness has different genesis. It can be caused by trauma as well as by virus or tumor. I know that doctors often just destroy this nerve with high frequency waves. One woman told that fir-tree oil helped her (she applied it just on the hurting place). At any rate it is harmless.
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"It is better to be roughly right than precisely wrong"
Sorry to hear about your headache condition, Aint.
Most people who haven't suffered from chronic headaches don't realize how debilitating this kind of pain can be, since they've only experienced the typical mild sort of short-lasting tension headaches that most everyone experiences once in a while. Headaches can be life-altering.
Looking (metaphorically, since I haven't seen them) at your MRI results, the two tiny white spots mean virtually nothing in a guy your age. What the teeny-weeny white spots are (most probably) are the traces of miniscule unimportant little capillary bursts in your brain (which happen to everybody over time). Migraine headaches can cause those spots, and a radiologist will often write "spots consistant with migrainous condition" in the notes. These capillary bleeds could be the result of rough handling to your brain from that big car accident you had, or a roller-coaster ride, or playing football, or someone punching you in the face, or your mom dropping you on your head when you were a toddler, or you falling out of that tree when you were playing Superman and thought you could fly. Or from getting really really drunk. Or really really mad when you have high blood pressure. Stuff like that. The older we all get, the more teeny-weeny little unimportant brain bleeds we have, and when they heal they leave scar tissue that shows up as a teensy white spot in your MRI. If you live long enough, you'll have a few more in your next MRI (if you ever get another one, )
Your neurologist knows these are nothing important. She can tell the difference between those little spots and the signs of Multiple Sclerosis, which are larger, irregular patches of white scattered through your brain instead of sharp little white points. Multiple Sclerosis is a neurological disease that causes the coating around nerves and neurons to waste away (like stripping all the insulation off of wires inside your computer) and that means all the signals traveling through those cells are subject to interference and dispersal, causing lots and lots of problems, which it looks like YOU don't have, thank goodness.
Now, is it Trigeminal Neuralgia? You say they checked you out and no blood vessels are impinging on your Trigeminal nerve. I don't know what tests they used to determine that, but almost all your symptoms sound to me like Trigeminal Neuralgia, even though you don't have a trigger. Your trigger might be something you don't even realize is a trigger... like swallowing, or turning your head a particular way, or having the breeze rustle through your hair in a certain direction, or chewing food on a certain tooth with a certain pressure. Whatever set of criteria that sets off your nerve to fire a wild burst of impulses that your brain feels as pain.
Neurontin is not the typical choice of medication for Trigeminal Neuralgia, usually a neurologist will try something like Baclofen first. Neurontin is definitely something used to treat nerve pain (as well as seizure disorders, which are nerve disorders). It usually takes time for the drug to build up in your blood and have an effect, so I find it curious that you found relief after the very first pill, but a good result is a good result. Idiopathic Headaches do tend to remit spontaneously (and return spontaneously) so it might be that your headache just spontaneously went away at the same time you started the Neurontin, although I certainly wouldn't recommend that you stop taking it. Something you might want to know about, since you've been talking about trying to lose weight in the past months -- Neurontin and all Gabapentin-based medications are associated with increased appetite and significant weight gain, so you're going to want to be aware of that side effect of the medication and try to watch what you eat.... just be aware that the medication really does cause increased appetite and food craving, and try to resist or feed the appetite with healthy foods or veggies whenever possible.
A newer drug used to treat nerve pain and seizure disorders is Lyrica (Pregabalin). You may want to mention this medication to your neurologist and question whether this drug may be a good option for you.
I'm glad to hear that under your current treatment you;re headache-free. Good luck, and please keep us apprised of how things are going!
Picture time -- Below is a very simplified diagram of the Trigeminal nerve and how it branches throughout the head, borrowed from emedicinehealth.com:
_________________________ Helice ~ Nemo me impune lacessit.
Ok, I found some information here helpful so I thought I would contribute a comment. I also have the same symptoms as described by Aint.
What I feel are stabbing, shooting, pulse-like pains in the same part of my scalp, about 2 inches behind my left ear, that last less than a second, and repeat at intervals of anywhere from 20 seconds to 4 minutes apart, so on average about once a minute. Another way of looking at it is imagine feeling a severe migraine in one small spot of your head and that lasts just one second, that would be an accurate description of each pulse of pain.
This lasts all day while awake and does not bother me while sleeping. I had this for about 3 days straight until I looked up some information on the web and found this site helpful as well as others that talk about Idiopathic Stabbing Headache, which is what I am pretty certain I have.
On other medical websites, the recommendation was Indometacin,(also known as Indomethacin)so I bought some,(its very cheap) and it was just the thing, I found immediate relief , within 2 hours of taking my first 75 mg dosage. I am following that up with 50 mg dosages, 3 times a day, for a total of 150mg per day. I just started on it and it works like a charm, I hope this information helps someone else . George
I'm glad you are currently finding relief with Indometacin.
You mention that you found tips about it through researching the web. I hope you also consulted a physician? Indometacin has some serious potential side effects, particularly with long-term use, that you ought to be aware of, and can potentially threaten your life if you have certain conditions.
That being said, Indometacin is sometimes prescribed for exertion headaches. If it is relieving your symptoms now, your condition might be related to exertion in some way.
I urge you to inform a physician of your current regimen and how it has helped you, so that you can get an accurate assessment of risk as far as long-term use of Indometacin, which can damage your kidneys, cause ulcers, high blood pressure, high sodium and potassium levels (which can harm your heart), edema (swollen ankles), heartburn, bleeding problems, heart attack, liver failure, and, oddly enough, severe headaches in 20% of people who take it because it affects the central nervous system. There have been reports of psychosis with long-term use.
Something that protects against stomach and intestinal damage from this drug is usually prescribed when it's taken long tern, such as Nexium.
I can't stress to you enough that, although it's terrific that you are getting relief from this medicine, you really need to be supervised by a medical professional because of the many side effects that this drug could potentially have on your body, especially with long-term use.
Just because a medicine is sold over the counter doesn't mean it's harmless. As a matter of fact, if you take too much Tylenol, it will kill you.
Best of luck, George. Please see a doctor if you already haven't, okay?
Full list of potential side effects of Indometacin, according to the manufacturer:
GASTROINTESTINAL nausea** with or without vomiting dyspepsia** (including indigestion, heartburn and epigastric pain) diarrhea abdominal distress or pain constipation anorexia bloating (includes distension) flatulence peptic ulcer gastroenteritis rectal bleeding proctitis single or multiple ulcerations, including perforation and hemorrhage of the esophagus, stomach, duodenum or small and large intestines intestinal ulceration associated with stenosis and obstruction gastrointestinal bleeding without obvious ulcer formation and perforation of pre-existing sigmoid lesions (diverticulum, carcinoma, etc.) development of ulcerative colitis and regional ileitis ulcerative stomatitis toxic hepatitis and jaundice (some fatal cases have been reported) intestinal strictures (diaphragms)
CENTRAL NERVOUS SYSTEM headache (+11.7%) dizziness** vertigo somnolence depression and fatigue (including malaise and listlessness) anxiety (includes nervousness) muscle weakness involuntary muscle movements insomnia muzziness psychic disturbances including psychoticepisodes mental confusion drowsiness light-headedness syncope paresthesia aggravation of epilepsy and parkinsonism depersonalization coma peripheral neuropathy convulsion dysarthria
SENSES tinnitus ocular - corneal deposits and retinal disturbances, including those of the macula, have been reported in some patients on prolonged therapy with INDOCIN blurred vision diplopia hearing disturbances, deafness
Hello Helice, thanks for the information and advice. I am actually on a work trip in China right now, so I opted to selfmedicate rather than take a chance with a foreign doctor and deal with the miscommunications and so forth. Thats another reason the Indometacin was so cheap and easy to get here, I have no idea if it is available without a prescription in the US. I read about and am aware of the possible side effects so I will keep that in mind, in the mean time, it is working great for me,and I will consult a doctor when I get back home. Just for kicks, I will not tell the doctor what I already know, and see what kind of diagnosis I get, I have a healthy skepticism towards doctors.
As it was for me, I can imagine that any person feeling this condition for the first time is liable to get really concerned and freaked out, due to the strangeness of it, so I was very grateful to find useful information out here on the web that led to an apparently accurate diagnosis and to one possible solution, which for me was the indometacin. Thanks again, George
Thanks, George. Your symptoms do sound a lot like mine.
My doctor and neurologist (and web sources) have all said that with neuralgia and ISH people can sometimes manage just fine with less than 300mg per day of just about every prescription medication prescribed. I'm taking the Gabapentin (Neurontin) 300mg once a day and sometimes skipping a day. The docs said I should try that. Originally, they said I could go as high as 300mg three times a day to get relief.
So far, so good. No more pain. Towards the end of a skipped day I do sometimes feel a 1 second tingle in the same area I used to feel pain. It doesn't come with anywhere near the same frequency of occurrence though.
I'd like to try going down to 100mg once or twice a day and then down from there. The less I have to take, the better.
No noticeable side effects so far. My balance is great. No sleepiness. No mood changes. No weight gain or swelling.
One thing that does still concern me is the possibility of a misunderstanding of why I'm on this medication. It is used to treat various mental disorders and as part of a methamphetamine detox program. I'd hate to be incapacitated and not given the most appropriate treatment due to false concerns for my mental health or drug problems. I carry my PDA a lot and have put in it that I use this medication for ISH. I'm considering putting a note in my wallet, too.
The doc wants to see me again before Christmas. Maybe we'll do blood work.
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Idiopathic Headaches do tend to remit spontaneously (and return spontaneously) so it might be that your headache just spontaneously went away at the same time you started the Neurontin, although I certainly wouldn't recommend that you stop taking it. Something you might want to know about, since you've been talking about trying to lose weight in the past months -- Neurontin and all Gabapentin-based medications are associated with increased appetite and significant weight gain, so you're going to want to be aware of that side effect of the medication and try to watch what you eat.... just be aware that the medication really does cause increased appetite and food craving, and try to resist or feed the appetite with healthy foods or veggies whenever possible.
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