ANOTHER HEAD PRESSURE VICTIM

Hello, I have been observing this site for some time now and now that I have finally been able to get through, I would like to say wow, because I have read numerous posts that fit my symptoms perfectly but yet we all remain without any real solutions.  I would like to say before I get started with my question that I have used Elavil, topamax, inderal, verapamil, lexapro, and 1 other I can't remember right now all for at least a month each without any real improvement.  I also have been through the usual CT/MRI brain scans and blood tests. (normal or course)

Anyway, my symptoms are just like all these other "head pressure syndrome" people, I have a never ending head pressure behind my forehead and eyes and my head feels like it weighs 200 pounds like a brick is sitting on top of it. It messes up my life!  I feel an enormous amount of tension in my forehead and in my eyes (left and right movements) and sometimes I lose control of my eyes briefly after a sharp movement (nystagmus perhaps).

Since I guess you will have nothing new to add based on the numerous "head pressure syndrome" posts, I want to ask if maybe there is something outside the head region that could cause this, such as poor blood drainage through the neck veins?  I have to wonder this because my nose is constantly swolen shut and since this is a highly vascular region I think sometimes too much blood is getting to my head? Also 1 more thing I used to get syncope on standing alot but now instead I get a deep painful throbbing upon standing that makes the pressure feel better for a sec  

Dear God, help us

[CCF-Neuro-M.D.-SH]

First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.
   The symptoms and story that you describe is fairly common in patients with refractory headaches.  These patients go through many trials of medications and medical testing with MRI/blood work etc. until their physcian or the patient gives up.  As neurologists learn more about headaches we have found a vast variety of causes and treatments, many of which have been unexpected.  For example, it was a shock to many doctors and patients that taking regular (more than twice per week) doses of common analgesics such as tylenol, motrin, vicodin etc can cause headaches (re-bound headaches).  Your particular case sounds complex and I suspect there is much data that I do not have, but I have some suggestions that you can explore.  First you mentioned a 'enormous amount of tension' around your forehead/eyes region.  There are headache treatments that address this tension inorder to reduce headaches.  One is Botox injections.  These injections relax the muscles that trigger headaches (head pressure) [although some of the mechanism of action is unknown]  and provides 2-3 months of relief per injection.  There is also a surgery that relieves some of the pressure in these muscles that is also used for refractory headaches (although this is more controversial).  Your complaint of pain/throbbing upon standing and your history of syncope with standing should aslo be investigated.  A good first step is a tilt-table test.  There is a common syndrome that often occurs with headache syndromes that is called POTS (postural orthostatic tachycardia syndrome), which can lead to the type of symptoms that you describe.  There are headache syndromes (SUNCT, paroxysmal hemicrani, cluster, etc) that involve nasal conjestion and rhinorhea (runny nose) and your nasal symptoms may very well be caused by your headache instead of the other way round.  Many patients relate the sensation of 'too much blood' throbbing in their head, but this does not coorelate with an acutal change in blood volume in the area, but an increased sensation (often quite uncomfortable) of the pulsing of blood through the blood vessels in the head.  It sounds like you have been through a lot already, but I hope this has been helpful.

[Manhattan]

I love your name. I so know how you feel. Felt like this all last night and didn't sleep for five minutes. Have you been tested for allergies? I have and all normal. Have you ever tried OTC sinus pain med? Did it work? I hope this doctor has some advice for us. Headaches definitely affect your quality of life. I'm wondering if this is just a variant of migraine because the trigeminal nerve runs through the sinuses I believe. Last night when it started we had a cold front come in. Possible trigger?

[LoveMyVPShunt]

Wow this sounds all familiar.  I was experiencing the same symptoms the pulsating sound in my right ear, visual disturbances, high pressure headaches, all around feeling lousy.  

It took several trips to several neurologists before I finally found one that knew what he was looking at. I was diagnosed with Pseudotumor Cerebri and they later found I had an arachnoid cyst that was obstructing the flow of CSF.  On Lumbar punctures, my opening pressures were 42 and higher (average person 15-20 opening pressure)  

Off for a VP shunt I went, and I must say, I LOVE IT.  It has cured all of the high pressure headache symptoms.  The surgery was relatively easy, went quick, recovery went well, shaved head though, and I was back home in 2 days after surgery.  Every now and then, when the abdomen pain gets bad and the tugging feeling in my neck starts coming on strong, I question why I got the shunt.  Than I remember all the pressure free days it has brought me and thank god for it.  

Thank you Medtronic for the adjustable Strata shunt, it works great. !!!!!!!

[Mels22]

WOW - the symptoms you describe sound EXACTLY like mine.  It has only been about 10 days of the symptoms and they are already driving me crazy!  I hear my heartbeat in my right ear - sometimes its a whooshing sound.  I have the most pressure in the world.  Mainly in the front of my head - feels like a band around my forehead.  My vision sometimes gets blurred and I have no answers.  If you don't mind my asking, this thing that obstructed your flow, was it caught on a CT or MRI or anything?  I have heard of this psuedotumor cerebri but how did he diagnose you with it?  My neuro doesn't seem to even think about that diagnosis.  She sent me for a BAER test which I can't figure out what that has to do with my symptoms.  Anyway, I would appreciate some answers and I'm glad you finally got relief!
Thanks!

[Ldyk513]

Have a headache since Tuesday & its Friday. Started in the back of my head on the rt side as a sharp stabbing pain. ER trip & CT Scan revealed nothing. Saw Dr. Wed a bit better. Thursday night was bad, shower @ 10:30 the pain started. I had pressure & pain on the right side of my head as well as my scalp burning in certain areas. Took 200mg motrin @11:30 & again @12:30am. Fell asleep @ 1:15 woke @ 4:10am w/severe pressure all over my head, followed by the chills, nausea & then a case of diarrhea. Took 20 minutes to shake the chills but I couldn't lay back down & had to fall asleep sittting up. Today had a bit of a dull ache & now @ 6:44pm the pressure/pain is returning to the front top of my head. I have had some spots in front of my eyes. Migraine possible but why the burning & why is the tender area where the original headache was?

[jcverive]

To Kldyk513,

Your pains sound like occipital neuritis/neuralgia, or some other pain involving cervical nerves (most likely C2/C3). A neurologist would normally be the best bet for confirming or denying such a diagnosis, and you might be sent for an MRI or CT to rule out more serious conditions, such as MS. However, imaging studies don't yet have sufficient resolution to detect the very slight trauma that is often responsible for the pain, so don't be surprised if an MRI or CT come back clear.  Many neuralgias are diagnosd based on description of the pain and response to various medications.  

Unless your pain is throbbing, you probably don't have a migraine or migraine-variant. Nonetheless, don't be surprised if a Neurologist wants you to try migraine medications.  Many doctors don't regard occipital neuralgia as a real condition until all others are ruled out.

Good luck.

[shaggy29]

I have to agree these symptoms are JUST like mine, there is some sort of syndrome that is not yet understood and is being mis-labeled "migraine variant" or "tension headache".   3 months ago I would have been surprised to see how close your symptoms are to mine but I am not too surprised to see this post anymore since I'm convinced we all have the same unknown condition.

[Ldyk513]

Thank you for your help. I actually think you're right. My primary mentioned that diagnosis and said he's praying we're able to rule it out since treatment for something like that is difficult. Last night my husband was rubbing my shoulders and I had a shooting pain in my head. A few years ago I was rear ended and have a pinched nerve so I am wondering if that may be part of my problem. I sitll have the headache on the right side of my head and temple and it is affecting my ear from time to time as well as my jaw.I am definitely going to speak to my doctor about it and am scheduled for an MRI as well as a Neuro consult. I hope they find a diagnosis before pumping me full of drugs. Thanks again & I'm glad to hear I'm not "losing my mind" since this seems to be effecting a lot of people!

[396SS]

Just a thought - I had a lumbar puncture on Friday and then Sun through Wednesday I had an excruciating headache when I was standing or sitting.  If I would lie down, it was okay, otherwise, it was unbelievable.  That is caused by the decrease in CSF fluid when I stood up.  On that note, one would think it could be a CSF pressure problem.  But on another tangent, someone mentioned eye movements, pulsatile tinnitus, and someone said a BAER test was ordered.  A BAER or ABR, is and auditory brainstem response test.  They put a few electrodes on your head and some earphones and you just need to relax.  This tests the VIIIth nerve (auditory)up through the brainstem.  This may have been ordered on the idea that you could have inner ear problems.  However, you can have normal BAER results sometimes with inner ear pathology.  Has anyone ever had vertigo with this head pressure that is posting?  Inner ear pathologies, like Meniere's disease, can produce a fullness in the head sensation, tinnitus, hearing loss and dizziness/vertigo.  Just some thoughts....hope you all feel better.

[alchris]

just thought I would post too.  Last summer i posted with similar symtoms (symptoms).  This is been ongoing for me to doctors for well over a year and cant find help.  I have a constant headache with a distinct pain/pressuer over my right  ear.  To this i also have ringing and pain in both ears, but right ear much more so.  The most prominent symtom i have without a doubt is when the pressure in my head becomes much more I actually feel my ears filling up with fluid.  Mostly again right side.  After the fluid fills in the ear my headaches increase than my head takes on afunny feeling.  I am to hopeless in not knowing what to do.  Can someone tell me more about the BAER testing I never was offered this or had it done.  Who would I see to have this as i feel I exhausted neuro and ent doctors.  Would appreciate any help.  thank you  by the way I have had MRI and cisternogram.  Odd thing is that I have on my films these spots that show up only on the right side and every doctor has a different reason for what they are.  My prolactin levels are also raised and i am told it has nothing to do with my problems.  though i have to beelieve there is a connection somewhere and I know how my head feels.  If someone wants to look at films i can post a link.  thanks again.

[RobertMillerFoundation]

This has gone from strange to down right weird...I have had symptoms like this for around 2 years now.  alchris, what is the link to your MRI?   Here is my site...it explains what the doctors finally diagnosed me with (it took 3 hospitals and 10+ doctors making fun of me before I got my diagnosis)... Robertmillerfoundation.org ..my MRI is under the "letter" section

[Mels22]

That is toooooo strange!!!  I have almost the same symptoms as you!  Mine are...
Bad head pressure - especially around forehead and right side
right sided ear pain/pressure
Right sided ear fullness/ringing
neck stiffness
Pain behind right eye

I had the BAER test done last week actually.  My neuro ordered it.  I had it done at my local hospital.  It only takes about an hour - it looks for things like an acoustic neuroma, MS, hearing loss stuff like that.  I have had 2 MRIs and an MRA - both came back with just chronic sinusitis.  I don't have the spots like you - I don't know what that could be, sorry.  Have you had an MRA?  It is better at looking at the arteries in the brain.  One diagnosis I keep getting is TMJ.  Do you grind your teeth or clench your jaw?  Also some keep telling me pseudo tumor cerebri.  I have seen my GP, Neuro, and ENT - my hearing is excellent, nothing wrong with my ear.  Even my eye doctor says nothing is wrong.  I'm at my wits end.  I have always been fearful of aneursyms - my friend died of one.  But I guess if my MRA was clean 3 months ago I'm ok, right?  Good luck with your BAER and let me know what you find out!

[alchris]

I have to scan my films in.  Odd enough each doctor I go to admits all one thing there is something on the right side but no one can agree what.  How scary is this the last doctor told me it must have been where they injected to dye to show up that way.  Cant figure out how that could happen but after that I actually heard it all.

Mels  I am going to make another apointment for another doctor and see if someone can offer the BAEr test for me.  Maybe it will pick up something  somehow and work from there.  cant take going to doctors anymore.  Especially when I know something is very wrong with the way my head feels.  It is not normal especially to have fluid filling up in the ears througout the day.  Will let you know.  Let me know what happens with your results for the BAER.

[396SS]

You can get a BAER from an audiologist.  Call your local Ear, Nose and Throat or Speech/Audiology department of a hospital and they should provide it.  This is if you don't want to go to a neurologist - because they had it in my neuro's office and another neuro I saw had to send patients to a stand alone lab for it.  

[alchris]

thank you for your response. No doctor ever offered this to me and maybe somwhere it will somehow hope me solve my head problems.  Its odd though I keep complaining to doctors about my right ear and no one ever said lets do that test.  No I know I can ask.  Thanks again.

[396SS]

You're welcome:)  I just re-read your post and was wondering if you have seen an ear nose and throat physician?  That would be my next step.  You could get the BAER, audiological evaluation and everything done in one place.  It's aweful if they haven't suggested an otolaryngologist/otologist (ENT), with all your ear, fluid, pressure complaints.

Good luck and take care!

[alchris]

Hi yes seen many ent/neuro they all write it off . I Try and explain too many times what I feel especialy with the ears.  But yes, no doctor ever suggested that test in all these months. Odd you would think at least one doctor would have at least known about the BAER test and suggest.  Scares me to think how many doctors I went to and it seems one good one is too hard to find. So hopefully i can get a Doctor to do this. Thanks again.

[Kldyk513]

I wrote around 1/26 & still have the headache which is really bad today however I do have good days. The thing is that now I get spots in front of my eyes, the chills and I seem to have a virus b-c food isn't agreeing with me however I'm wondering if it's all connected. I can't sleep and at times I feel like I'm in a "fuzzy state." My MRI was clear & I have an appt w/a Neuro on Monday. At times both my ears feel clogged and my right one crackles sometimes. The top right side of my head hurts. I have anxiety attacks at times from not knowing what is wrong with me. I had 2 buldging disks in my neck a few years back. Could they be herniated now and causing all these problems? I have a history of sinus infections and think they are the cause of my sudden pain which started after I woke up with severe sinus pressure and all stuffed up. I just don't know what to do anymore.

[anxiety-NOT]

I suffered with stiff necks that led to occasional headaches in the back of my head, but more just extreme pressure and heaviness in my head, along with vertio.  After numerous visits to ENTs and even a neurologist, who suggested I had "anxiety disorder" because he couldn't find anything wrong with me, I went to Mayo Clinic in Rochester and finally saw a great doc.  I had Chiari Malformation type 1 and underwent a decompression surgery and laminectomy.  My cerebellum was too big for my head.  Surgery wasn't too bad.  No hair up a strip in the back-like a reverse mohawk.  Anyway, pressure is better, but now it's more in my ears off and on.  And, I still have vertigo.  Not like it was, because I had it for 3 weeks straight before surgery.  Awful.  This is a commonly undiagonosed condition.  Ask for an MRI of the base of your skull and see if it affects you.  Most doctors don't even know what it is, and many neurologists only consider it if there are obvious other birth defects related to it like spineabifida(sp?) of if it's the more advanced Chiari type 2 or 3 or 4.  All the same thing, the cerebellum hangs into the neck and plugs up the flow of cerebral fluid.  

Don't let anyone try to tell you that you have anxiety or a "virus".  I've learned that these are cop-outs, if docs. can't find anything wrong with you on regular blood tests, etc.

[patsy10]

I just found out I have Chiari 1 malformation.  What other symptoms did you have.  I've had numbness, tingling, twitching, headaches, pulsing and pressure in my eyes, brisk reflexes and much more.  All my tests have been normal.  I'm wondering if this may be the cause of all my symptoms.

[SJTM]

I had head pressure also, plus double vision, and pain when I moved my eyes.  Had VP shunt Dec. 2006, with 2 revisions within one week.  Pressure gone, but headache remains. Hopefully things will eventually clear up.  My CSF pressure at the time of the ventricular tap was 23.

[patsy10]

Was it Chiari type 1?