A headache that will not stop

[kckccasey]

I hope someone can help as I am begining to lose hope.  I have an almost constant headache, usually on the right side of my head but it does "travel" from time to time.  It is usally pressure, but sometimes it is burning, sometimes stabbing and sometimes it feels as if water is running INSIDE my head.  I have been to a nuerologist )2 of them, actually) a rheumoltologist (2 of them as well) an allergist and my GP.  I had a MRI and a CT scan and both were "normal."  I was taking Nifedepine for Raynauds when the 2nd nuerolgist said that was likely causing the headaches so stop taking that.  I did, no change.  Does anyone out there have any insight?  Please?!

[AngieP5]

did your neurologist mention intracranial hypertension?  or pseudo cerebri turmor?  I've had constant headaches for almost a year and they diagnosed me with this.  Only way to diagnosis is by lumbar pucture/spinal tap. If your neuro hasn't discussed this - if I were you I'd google and see if any of your symptoms match up.  Just a suggestion. Let me know if you have any further questions.
Angie

[kckccasey]

Tumor?  That sounds scary.  I was hoping that if I had something like that either the MRI or the CT scan would have detected it.

I will Google both.  Thanks for the insights

[AngieP5]

sorry didn't mean to scare you.  No, psuedo cerbri Tumor actually means false tumor.  they originally named it that because you have symptoms that are similiar to having a tumor but don't.  The new name for it is IntraCranial Hypertension.  And no it would not show up on MRI or cat scan only diagnosed by lumbar puncture.

[kathy434]

One year I suffered an exchruciating pain in my head for at least four days.  I was in bed, in a dark and quiet room.  The pain just wouldn't give an inch.  I was in agony.
My brother who studied Yoga suggested that I sit on the edge of the couch, relaxed, eyes closed, and concentrate on nothing but my breathing in and breathing out.  I did this.  He gently placed his thumb and then pressed on the back of my neck just below the Occipital Bone at the base of my scull between the verticle tendons at the back of the neck..  He kept the pressure applied for 1-2 minutes.  Just like that, the pain was totally gone.  I couldn't believe it.
If your brain scans are all normal, no physical abnormalty, then consider that you are having a Migraine Headache.  You usually feel it on one side of the head.  There is medication that is extremely effective on Migraines.  The moment you "see" weird stuff, take the pill and go lie down.  In half an hour you take one more pill and relax.  That is usually all that is needed.  Talk to your doctor.
Another time my husband started "seeing" the "Aura" just after we had ordered a meal in a resturant.  I asked the waitress if somebody there had some strong pain killer meds.  She found a pair of pills.  Then I had her bring him a full pot of very strong coffee.  The pills and the coffee (lots of it for the caffine) aborted his migraine.  We ate dinner in peace.
If you have pain in your Temple area, you may need something like Inderal that helps to relax those painful vessels.
Talk with your doctor to see if you are having migraines.  Migraines can also be brought on by hormones changes within your body.
I have even experienced my eyes seeing underwater visuals, quite scarey, only to learn I had what is called a silent migraine...one in which I felt no pain.    Talk with your doctor.  Good luck.

[brunette0508]

I was very shocked and surprised when I read this. I have almost the exact symptoms except without the burning feeling. But I feel that running water kinda feeling INSIDE my head too!! my headaches are costant and usually on the right side of my head as well.

My problem is my doctor is thinking im lying and or over reacting and keeps prescribing me medication without doing any tests. I went to an appointment in which my doc was on vacation and i saw a different doc and all she said to me was that I dont eat enough (which is clearly not the case). I did however find out through blood tests that i am B12 deficient but.. even while taking 2000 mcg of vitamin B12 I still have headaches and they never told me if could even be linked to my headaches or not.

I am losing hope as well. I cry at nite because i cant sleep. I cant have time off work so i end up draining myself. Ugh.. if you hear anything about a diagnosis from your doctors will you post it? Maybe I will have something to mention at my next doctor appointment. Thanks soo much.

[ChappyCH]

kckcckcck,

Two most important pieces of advice:

1) When I first sought a diagnosis, I described my pain as "constant."  Only after $30,000 and 8 years did a neuro suggest that I keep a headache log.  I logged my "pain level" throughout the day, and while I'd considered it pretty much constant I realized that it actually rose and fell in 30-90 minute cycles throughout the day, and even went away for 5-30 minutes in between.  Since you're not thinking about it every second, you won't always notice that it goes away for short periods, and how long each headache lasts.  Those are KEY to getting a proper diagnosis.  I wouldn't have been able to do it without my iPhone's notepad - just click and type-in pain level any time I noticed it changed.  

2) Go to a neurologist who is a headache specialist, and only a headache specialist.  Headache diagnosis is a tricky business - cluster headaches (my particular curse) take an average 6 years from initial symptoms and doctor visits to diagnosis.  If your doctors aren't actively pursuing a proper diagnosis, find one that will.  I had to travel to the nearest big city to find a headache specialist neurologist before I was properly diagnosed.

Now, based on your post, the one-sided (unilateral) headache is common for migraines (which literally means "half the head" in greek), cluster headaches (also one-sided, often considered a type of migraine), and hemicranias (again meaning half-the-head but in latin).  Google "international headache society classification" and you can read the "official" diagnostic criteria and symptoms for these.  It's not common, but many people with migraines and cluster headaches experience pain that "travels" to the other side - when my pain is at its worst on my left side, I'll feel short shocks and stabbings on my right side.

The description of pain as burning and stabbing are defining symptoms of cluster headaches (but maybe not exclusively).  People describe them as a burning-sword piercing behind the eye, in front of the ear, in the nose, or at the back of the head where the neck meets the skull (trigeminal nerve loci), but most of us eventually experience the pain in all of those places.  Cluster headaches typically last 15 minutes to 3 hours (although many people, including myself, have experienced very rare 5-8 hour attacks despite what the experts say).  You'll need to carefully log your headaches to see how long they last (as I said before, this is an important diagnostic criteria).  You DON'T WANT cluster headaches, so hopefully it's something else, but the severity of pain (when untreated) is described without fail as worse than childbirth.  Other symptoms include autonomic activation, which can include sweating, tearing and swelling of the eylid on the pain-side, and often sudden nasal congestion or nose-dripping.  I have experienced the sensation and sound of water running through my head, as well.  It's not listed in the typical articles and symptoms of cluster headaches, but I've posted about it in the primary clusterheadaches (add a dot and a you-know-what) forum, and found many other sufferers experience it.  It sounds and feels to me like squirting, pressure suddenly released through a pinched tube or something.  I get it when laying perfectly still watching TV, so I know it's not tendon or bone related.  And since I can both hear and feel the sensation, I know it's not an aura-type auditory hallucination.  I've been to leading headache specialists, and even they weren't aware of this.  If you have cluster headaches, then when the pain reaches a certain level you'll find yourself agitated - unable to sit still, often wanting to rock back and forth, pace around, or even bang your head.  This is in contrast to migraines, during which you'd want to remain still.  Cluster headaches do not throb - they're constant, burning, piercing, and extreme.

I've read that 20% or so of cluster headache sufferers also suffer from migraines, and I suffer from basilar migraines as well, so you may have migraine-type symptoms and cluster headache-like symptoms at other times.  Again, google "autonomic activation" and "aura" and "prodrom" to get an idea of what other symptoms are involved in various types of headaches, and add these to your headache logs.  I experienced aura symptoms years after the headaches started, and thought it was something unrelated to my pain, and even after listing symptoms that are within the list of aura and prodrome experience, neuros didn't make the connection.

The problem that I have found is that diagnostic symptoms for many types of headaches follow a broad spectrum with each individual, and some symptoms shared by many sufferers of a specific headache classification aren't even listed in the diagnostic guidelines that doctors follow.  For instance, one-sided phonophobia was recently shown in a study to affect 60% of cluster headache sufferers, vs <5% of migraine sufferers, and though I'd complained about it not one neuro or pain specialist linked it to cluster headaches.

[kckccasey]

Wow, what a post.  Thank you for all the insights.  In fact, I am going this morning to a Headache Center, hoping for a bit more than the usual "take my blood pressure, feel my head, listen to my neck and then prescribe some useless medication."
This is so strange as I never really had any problems until I started taking the Nifedipine for my Raynauds.  The doctor told me that any blood pressure medicatiuon would likely result in headaches so I am hoping that once I am off it for a few weeks, the headaches will disappear as well.

I will keep all of you posted and I thank each of you for your thoughts.  They are certainly helping me get through a most trying time.

[kckccasey]

Since all of you seem to understand what I am going through, let me ask you something.  Once you rec'd the news that the MRI and CT scan were "normal" how did you convince yourself that indeed there was nothing about which to worry.  I have my results but I still feel that there is something wrong, that perhaps all this wondeful technology missed something...

[brunette0508]

By the outcomes of my doctor visits, I dont think my doctor thinks anything is wrong. I have seen him 4 times now and been prescribed 4 different medications, all of which have not helped. I am hoping to even see a neurologist after my aug 27 appointment at my docs. My problem is telling them I want the MRI and or CT scan done. :S. I dont know how to handle it tho if they tell me things are normal. Its just too painful to be something normal. I guess i would go back to square one and eliminate all remote possibilities, eye doctor ..etc.

[kckccasey]

This is just so depressing. I had been feeling decent for the last week or so, thinking maybe I had whatever beat. Then, yesterday morning BOOM the pressure is back. Now I have felt it constantly for the past 24 hours. I'm going for a CTA scan tomorrow and, like my brunette friend, don't know what I will do if I am told all is normal. But, considering the alternatives, that is what I want to hear.

[mle134]

For headache conditions thank God the MRI CT scan results are almost invariably normal.  There can rarely be some white matter lesions for long term uncontrolled migraine sufferers.  Docs check these to make sure you don't have an undetected aneuryism or tumor.  Always should be glad when they come back negative.

Headache disorders are difficult to diagnose because you don't have abnormal xrays or lab tests for someone to look at.  They have to go off your symptoms.

I have been diagnosed with hemicrania continua which is a non-stop headache on one side of the head that never stops.  It is hard to diagnose as regular neurologists don't see a lot of us, just headache specialists. It's sort of a cross between a migraine and a cluster headache.  My pain levels were very high, similar to cluster headaches, to the point all I could do was pace until I actually couldn't do anything but shake and writhe in pain, but many people don't get that severity with hemicrania continua (thank heavens!).  Even heavy duty pain killers don't help much, and most HC sufferers don't get the relief from oxygen that cluster headache patients do.  My blood pressure goes sky high when I'm in this kind of pain.  

For many of the hemicranias (proxysmal hemicrania, and hemicrania continua) indomethacin is the drug of choice.  It is an anti-inflammatory drug that is hard on your gi system.  It did help my pain a great deal, but also caused some bad GI complications after about a year so I had to quit taking it.  I was very sad to quit taking it.

I have an occipital stimulator that was installed in June of this year, and at about two months (a few weeks ago) started being effective in pain reduction.  Some cluster headache patients have tried it with varying degrees of success.  Occipital nerve injections did not help.

Steroids did help me short term, as did verapamil (which dropped my BP too low even at the lowest dose).  Hang in there, and don't let some doctor tell you how you feel.  I hit a few bad docs on my way to the ones I have now.  Mostly they just don't know enough about rare headaches to know how to treat or diagnose.

[kckccasey]

Waiting for the results of my CT scan; why do they take so darn long??!!

[kckccasey]

Okay, now I have 2 normal CT scans and a normal MRI. I have been to 3 different nuerologists, 3 rhuematologists, an allergist and an eye doctor. I am now on my 3rd different pain medication. And you know what, the headache remains!  I am just so tired and I am really starting to get depressed as I just do not see any light at the end of the tunnel.
Does anyone have any insights or words of encouragment ad I could certainly use one or both right now...

[hava]

There is a bright light half way down the tunnel.You have been through all the tests.Now relax and start this today.For the first 7 days, exclude the kapalbhati pranayam.Drink warm water and stop cold drinks.I would like to know how you feel after 21 days.Keep a log of the headache episodes.
Concentrate on the breathing with your eyes closed.
The Yoga Pranayam (breathing exercises) will  help with your headache  problems.
Build up your timing gradually. If you feel tired or dizzy, stop and resume after 1 minute.

Bhastrika - Take a long deep breath into the lungs(chest not tummy) via the nose and then completely breathe out through the nose. Duration upto 5 minutes.

Kapalbhati -(Do it before eating) Push air forcefully out through the nose about once per second. Stomach will itself go in(contract in). The breathing in(through the nose) will happen automatically. Establish a rhythm and do for 10 to 20 minutes twice a day. Not for pregnant women. Seriously ill people do it gently.

Anulom Vilom –
Close your right nostril with thumb and deep breath-in through left nostril  
then – close left nostril with two fingers and breath-out through right nostril  
then -keeping the left nostril closed  deep breath-in through right nostril
then - close your right nostril with thumb and breath-out through left nostril.
This is one cycle of anulom vilom.
Repeat this cycle for 20 to 30  minutes twice a day.
You can do this before breakfast/lunch/dinner or before bedtime or in bed.Remember to take deep long breaths into the lungs.You can do this while sitting on floor or chair or lying in bed.

Bhramri Pranayam -Close eyes. Close ears with thumb, index finger on forehead, and rest three fingers on base of nose touching eyes. Breathe in through nose. And now breathe out through nose while humming like a bee.
Duration : 5 to 20  times

After you are better, continue pranayam once a day for rest of life, to stay healthy.

[kckccasey]

This just keeps getting better...  Now, on and off, I feel a tingling in my forehead. Anyone ever experience and/or hear of THAT??!!

[pattig]

My daughter has had constant head pressure for a year and a half.  Had all the screenings.  Has been to a headache center, chiropractor, neurologists, endocrinologists, has gone for cranio sacral therapy.  she was referred to psychiatrist and psychologists and frankly the only psychological problems she has is the anxiety and depression resulting from the constant head pressure.  Feelings like her head is going to explode.

We are losing hope.

[marileew]

Tingling and numbness can be a common symptoms of migraines, which is the type of headache that I have... and it can also be a symptom of a few other types of headaches too. I get tingling and numbness with my headaches all the time.

Tingling can also be a symptom.. well, a side-effect, of some types of medications. Even some types of medications that are used to TREAT chronic headaches. A lot of people on the forums take a medication called topamax... it is an anticonvulsant (a drug that is usually prescribed to stop seizures) but it is often prescribed to treat chronic pain in neuropathic conditions and to treat headaches, usually migraine headaches... but other types of headaches too. Tingling, like "pins and needles" is a VERY common side-effect from this medication. Another medication that can cause a "pins and needles" feeling is SSRIs, especially if you are discontinuing them. But... those are just two examples... so many medications can have "tingling" as a side effect. So, if you are taking any other medications, it is possible that tingling is a side-effect and you should check the side-effect profiles of the medications that you are taking as well.

But... as for headaches... at least with neurological headaches like migraines, tingling can be a common symptom... although it's technically a less common symptom, when you get on a forum like this and start meeting TONS of chronic headache suffers, you will find that MANY people experiencing tingling and numbness if they suffer from neurological headache conditions such as migraines... I am just not familiar with other types of headache conditions, which is why I can't really say for sure if it's common with other headache conditions. I do know that if it's a "tension headache" and you have a pinched nerve or something like that then tingling can be a symptom...

Anyway... yeah... I wouldn't worry too much about it but if this is a new symptom and it hasn't gone away yet when you read this and it is more severe than regular "pins and needles", then please call your health professional immediately to book and appointment for today or go in to a walk-in-clinic today.

BUT! If you experience:

- persistent numbness on one side of your entire body please go to Emergency
- paralysis on one side of your body or on one side of part of your body, please go to Emergency
- sudden weakness, numbness, paralysis, or drooping of facial muscles WITH other loss of function such as inability to walk, vertigo, severe headache, radical change in personality or confusion, fainting, inability to speak, loss of vision... then Please go to Emergency

[SandyM2009]

I have had a daily migraine since 1998.  Medication was my trigger.  They unfortunately tried to treat me with more meds inducing more headaches until it because permanent.
I've had every test possible and tried every drug possible and nothing helps.
I  have been suicidal for with this last year being the best.  A sleeping med called ambien helped with the pain was helping with pain and sleep but ow is causing migraines as well.
I have two beautiful cats that will have no home...is there anyone out there who would take them before I have to bring them to a shelter.  Thank you.

[kckccasey]

Been feeling okay - not good, but okay - for a while and then today, BAM. My head has been hurting for a few hours, right side like always, and as funny as it sounds, it feels like someone opened a faucet inside my head and left the water running.  Anyone ever get that feeling?