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Head pressure that comes and goes for the past year. Any Ideas PLEASE!!!!

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Posted 3/6/2009 4:32 AM (GMT 0)
Hi, I am 21 years old. I have had this head pressure feeling since 12/26/07. The whole month of Jan. I've had it, and once a month for a few days until now. I've had an MRI done, but the doc was only looking for an aneurysm or a tumor. It was neither. He only prescribed me topamax because he thought that I had a migraine. The only thing that the topamax did was make me loose my taste to soda, but since I'm not taking it anymore it went away. I've been to a ENT and the doc. said that I had a cyst in my upper nasal cavity, but nothing to worry about. Ok, my symptoms are that lead me to think that it is neurological is that....I am sensitive to light and sound, loss of concentration, pressure behind eyes and on top of head, when I pop my ears the pressure goes away but comes back again right away, short term memory loss, eyes hurt when I read, irritated a lot, and loss of coordination (someone asked me if I was drunk because of the way I was walking). Note: All this happens when I have the Head pressure. When It's not present I feel normal like I used to before 2007. So If anyone has any Ideas please feel free to share. I'm open to suggestions. Should I get a second opinion?
Posted 3/6/2009 7:22 AM (GMT 0)
So you've already had an MRI done.. is it possible you could have it looked at again?  Mention "cerebellar tonsillar ectopia" to your docs and see what they have to say.  I've heard it can be easily overlooked.

lemme know,

Batman

Posted 3/6/2009 8:51 PM (GMT 0)
Hi again, I looked that up and some of the symptoms are headaches. One thing I forgot to mention is that when feeling like this, I don't have a headache. I'm thinking that it could be stressed related, and my blood vessels aren't getting enough blood or something in the brain or spinal fluid that's causing it to put pressure on my head.
Posted 3/7/2009 8:07 AM (GMT 0)

Cyane1 said...
Hi again, I looked that up and some of the symptoms are headaches. One thing I forgot to mention is that when feeling like this, I don't have a headache. I'm thinking that it could be stressed related, and my blood vessels aren't getting enough blood or something in the brain or spinal fluid that's causing it to put pressure on my head.

I would still mention it to the docs, just in case it was missed.  Chiari/cerebellar ectopia can cause some of the "drunk-like" symptoms you were mentioning, like ataxia, and loss of coordination.
Posted 3/7/2009 10:43 PM (GMT 0)
Cyane,
Did your ENT run any tests on you -- tilt table test, caloric test, etc.? If not, maybe start with that. If he did, see if you can find a place around where you live that does "vestibular therapy". They can test for additional balance disorders with the auditory nerve, brain, eyes, etc. Certainly vertigo can cause the symptoms you mentioned & it is not always because of a problem in the ears (regardless of what your ENT may tell you).

If that's the case, the solution is just some simple exercises that you can do mostly at home.

best wishes,
frances
Posted 3/8/2009 6:56 AM (GMT 0)

Frances_2008 said...
Cyane,
Did your ENT run any tests on you -- tilt table test, caloric test, etc.? If not, maybe start with that. If he did, see if you can find a place around where you live that does "vestibular therapy". They can test for additional balance disorders with the auditory nerve, brain, eyes, etc. Certainly vertigo can cause the symptoms you mentioned & it is not always because of a problem in the ears (regardless of what your ENT may tell you).

If that's the case, the solution is just some simple exercises that you can do mostly at home.

best wishes,
frances

Head pressure isn't a "major symptom" for Chiari is it?  From the reading I have done on it, it seems to be that "chronic migraine headaches" or "head pain" are the most common pattern in Arnold-Chiari.  What do you know about this?
Posted 3/8/2009 7:24 AM (GMT 0)
Well I go on Tuesday to get a CT of my head again, for the ENT. So I'll have to wait on the results. I am also going to see a new neurologist on Friday. I have a question? Do you think that the doc's can detect brain cancer at a very early stage? Cause I seem to have a lot of symptoms of cancer. I forgot to mention that when I get this, I feel dizzy when I turn my head. It's like I have to keep my head in a still position, and not move it. Well anyways, I'll w/b when I hear of my results of the CT. I'm am very eager to find out because this is very annoying.
Posted 3/8/2009 10:10 AM (GMT 0)
Cyane,
I think you're getting ahead of yourself. Turning your head from side to side or moving it up & down or diagonal -- or even just moving your eyes to look right & then left or up & then down -- is a major indicator of vertigo. I had that & the vestibular therapy helped resolve my symptoms completely. It was hard to do at first b/c I would just feel sick to my stomach & would get horrible headaches and eye pain just trying to do a few exercises, but I built up over time & now I'm a pro! I'm sure you will be too!

You can ask your doctor about whether cancer could show up on the specific films he ordered (I think part of it may depend on contrast, slices, views, etc.), but try not to worry yourself sick until you see if there isn't some simple explanation for your symptoms. A lot of diagnoses overlap and only a trained physician with all the information & tests in front of him can make an accurate determination.

Let us know how things go with you!
frances
Posted 3/8/2009 10:13 AM (GMT 0)
Batman,
I have Chiari. I'm honestly not the best source for what is considered a "major" symptom of Chiari. It is a degenerative disease, and I think part of it is that some people don't get diagnosed until they've had it for years or even decades & eventually I many people who develop symptoms do end up with pain either in the back of their head or their neck. For me, the first symptoms weren't headaches. I had a history of the so-called "silent migraines" & was seeing a neurologist for that, but we're not sure whether that was related to the Chiari.

First symptom was vertigo. Vertigo, especially when it is not based in the ear, often causes a feeling of fullness or pressure in the back of the head & pain around the eyes b/c of overcompensation of the visual sense for the failure of other senses to coordinate balance. Eventually (a few years later), I did start getting headaches, primarily with lifting -- also with coughing & sneezing. Some of them actually were migraines, & could be treated with imitrex or such, but most were the "chiari" headaches. The chiari headaches really were more like a throbbing pressure at the base of my skull. While bothersome, they were not especially painful. Symptoms progressed over time & I started to develop slurred speech (over another year or so). The vertigo got worse & worse. I started having problems with seeing black spots and also developed some minor issues with turning door knobs and the like.

I had surgery a while back to remedy the situation, but not all the symptoms are reversible. The main thing I would look to consider chiari as a diagnosis is whether symptoms were preceded by either whiplash or a fall, or in certain cases riding roller coasters a lot. Chairi is far more common in females than males & usually first shows up between 20's to mid-30's. Only 10-20% of people with the malformation develop symptoms. If you mostly fit those criteria & have noticed a progression, even if it's very slow, maybe it would be worthwhile to save up to get an MRI. Otherwise, I'd say it's probably not worth the money since you don't have insurance. Sorry I don't have any ideas for you. Wish I could be more help. :)
Posted 3/13/2009 7:02 PM (GMT 0)
Hey the is Cyane again. Went to the Neuro today, and he said that I might be anemia, or I could have pressure migraines. He wants me to get a CBC with in two weeks. He put me on topamax for two weeks to see if that helps, Treximet when I get a headache, and vicodin. I will let you guys know if it helps.
Posted 3/13/2009 8:58 PM (GMT 0)
JUST a reminder. CSF leaks often mimic symptoms of Chiari Malformation and are much more common!!! Research my friends
Posted 3/14/2009 3:53 AM (GMT 0)

Yes, Rooster!!!

Research is ESSENTIAL.

Its is very sad that I knew a lot more than some of the physicans I saw. Please <<all>> take some time to research different headache topics so you are informed!

Posted 3/14/2009 4:43 AM (GMT 0)
that's very true. I'm going to be searching more on what you said Rooster. Thanks...
Posted 3/14/2009 5:12 AM (GMT 0)
Cyane,
I'm so glad you found a good neuro & are happy with his treatment plan. I wish you the best with that.

Rooster,
I wasn't ever suggesting that Cyane has Chiari. Batman asked about it & I answered his question. I have had both CSF leaks (as a result of dural punctures) and Chiari and there is a huge difference between the two IMHO. As far as I understand it, they are the exact opposite as far as symptoms. CSF leaks fairly closely mimic migraines (though without sensitivity to sound & smells plus they improve temporarily with bed rest), whereas Chairi headaches feel quite different from migraines and are easy to diagnose if the person reading the MRI knows what to look for.

Still, there are a lot of other causes out there for migraine-like headaches that wouldn't show up on any films. Vertigo is one of those causes. It appears that isn't the case with Cyane, but it may well be a piece of the puzzle for countless others out there. It seems, in my case at least, that neuros are always eager to put me on migraine meds, preventative meds & pain killers, when what helps me the most is vestibular therapy. It is a relatively inexpensive battery of tests to rule out a neuro-vestibular disorder & treatment can be done at home. As far as I know, there is NO test for diagnosing a CSF leak. It is determined entirely on stated symptoms & can be difficult if not impossible to locate unless it resulted from a puncture wound (and even then it can take multiple attempts to place the blood patch). I just think before people decide they have a CSF leak that it would be worthwhile to get a neuro-vestibular work-up done to rule that out as a possibility.

Hope that clarifies things,
frances
Posted 3/14/2009 2:53 PM (GMT 0)
Actually head MRI can often pick up csf leak if the radiologist knows what to look for. Many are not detected though which is sad and many probably just go away on their own. I have a csf leak picked up on MRI and my HA does NOT feel like a migraine. It fells like my head is being squeezed which I refer to as pressure. To me it makes comlete sense if you have less fluid up their and your brain starts to sag you will feel like its getting sucked down or squeezed in. Every doctor told me that it was "tension headache" that if i had a leak i would not be able to stand up without throwing up and being in extreme pain. This is not true. If i Had a big leak like one form a dural puncture or lumbar puncture than it probably would be more severe. iN FACT THE DOCTOR WHO TOLD ME it was a "tension HA" THAN HAD TO EAT HIS OWN WORDS when he looked at my mRI(which was extremely satisfying, haha). It wan an MRI of my cervic spine which eventually showed "venous engorgement of nerves" which is def not something that docs look for. As far as Chiar mimicing CSF leak they do. CSF leak causes a downward displacement of brain which is similar to what Chiar is. The brainstem sags into sensitive nerve areas, which can cause vertigo, weakness, numbness, lethargy, horrible HA or mild HA but always present while upright. No they are not the same thing but may look similar on MRI if the brain is sagging(sometimes with a leak the brain will not be sagging like with me). In fact some people get risky decompression surgery b/c doctors actually think they have Chiari when what they have is a csf leak! Now that is scary! Google all this stuff it will come up. In fact I just did here we go:

"Typical magnetic resonance imaging findings include diffuse pachymeningeal enhancement, subdural fluid collections, and downward displacement of the brain, sometimes mimicking a Chiari I malformation. opening pressure is often, but not always, low, and examination of CSF may reveal pleocytosis, an elevated protein count, and xanthochromia. The use of myelography computerized tomography scanning is the most reliable method for the accurate localization of the CSF leak."

Neways I agree that many things can be causing HA. I actually refused to believe my doctor when he originally diagnosed me with a leak b/c there was no proof on an MRI and I didn't think I was that "special". Well it turns out I am and was only found because I kept persuing a "real" diagnoses. So anyways i am not trying to be condescending at all I am just trying to educate people. If you have a constant HA that does not go away a csf leak really is not that rare of a diagnosis it is just easily missed.
Posted 3/14/2009 11:34 PM (GMT 0)
Rooster,
Can an MRI pick up a CSF leak in areas other than the head? When I have had CSF leaks they have been from epidurals in my L-spine.

In my case, the CSF leak was exactly how your doctors described it -- nightmarish pain, vomiting, etc. whenever I would try to sit or stand. I was screaming the whole time my dad drove me to the hospital b/c even just being upright for that short trip to the car was brutal. I went to the ER & told them everything and even asked if it could be a "spinal headache" and they told me it was just a horrible migraine & that all my films were fine. Of course, the migraine medicines did absolutely nothing at all. The only thing that helped at all were narc pain meds.

It took a couple of times with the blood patches, but eventually they got the hole plugged & I was good to go. Still, if there is some way to find where the leak is, I would really like to know so I can suggest it to my doctors if this happens again (and I have a crooked spine, so it's entirely possible I will get it again, it's happened 3 times already).

Thanks much!
frances

PS -- I totally get what you mean about it being satisfying to prove the doc wrong. My neuro kept insisting that I was just bringing the symptoms on myself. When I finally found out about the tests for neuro-vestibular disorders & was diagnosed with severe vertigo (I was literally in worse shape than most of the post-stroke patients), I made sure to remind him of that about 3 times in my next visit. I knew it wasn't a migraine before he ever put me on the meds & I definitely knew it wasn't from stress. It would come on even when I was doing activities I really enjoyed. To think, all of that trouble & some NS's I saw to see if it was a complication from my chiari surgery even suggested that I needed revision surgery & all I needed was to practice turning my head while standing on one foot. ;)
I sure hope you can find something that will work for you!
Posted 3/15/2009 1:32 AM (GMT 0)
Oh and I forgot to mention that everything that I have as far as head pressure, and etc. I also have it to when I lay down to go to sleep or even lay down whenever, it seems then it starts to subside. I really don't think that it could be migraines because I never have a headache when I get all this. So IDK, it might be a CSF leak. I looked it up and it said nothing about irritation, sensitive to light, or sound. Unless it does, and I didn't research it that much in depth.

Post Edited (Cyane1) : 3/14/2009 7:36:50 PM (GMT-6)

Posted 3/15/2009 7:50 AM (GMT 0)

Are we saying that head pressure without migraine is more likely with Chiari, or with a CSF leak?

And you folks should also know that head pressure can be present without either condition, as lots of things can be behind this symptom; I've known some folks online who claimed it was due to dietary sensitivity, when taking out the offending item from their diet it became less noticeable, etc etc.

I don't know about CSF leaks, but I know that Chiari is a serious condition, not something anyone would ever want; let's not scare ourselves half to death here eh?  My set of symptoms lines up very well with Chiari so that's why I don't go to the sites to read more about it, as I get a lot of anxiety from reading about conditions that could match what I have going on...

Posted 3/25/2009 9:15 PM (GMT 0)
I just went back to the neurologist and I told him about how it might be a csf leak. He said that It's been two years since my epidural and it should of healed up by now. I've been poked 6 times cause the lady couldn't find the middle. I haven't got a cbc yet that he wanted me to get, but I am getting it on Friday. I now that I'm not anemic. But we'll see. He just gave me more vicodin, up my dosage of topamax to 75, and sent me on my way. Do any of you think that it could still be a csf leak, even though that it's been two years?
Posted 5/31/2009 12:32 AM (GMT 0)
CSF leaks around the spine (not around the sinuses) can be hard to find. Search the web for specific doctors and hospitals where they have a good track record for finding these and plugging them. "Double Jointedness" is a predisposing factor for such leaks. There are some and if you are going suffer through the treatments you want it done by folks who do it more than once a year. And whatever you do-- make sure you get this checked out before any treatments that cut nerves or otherwise can't be reversed.

I know what I'm talking about because we went to one of the super-specialty headache centers and most of the docs there saw the low CSF pressure and just ignored it, when the pain didn't go away after all their migraine treatments two weeks later a more senior doc reviewed the whole thing and said not only was it important but we'd be irresponsible not to have it checked out, and checked out by someone known to be good at finding them and dealing with them.

He also said that for a while low-csf pressure headaches will get better when you lie down with feet slightly higher than head, but after you've had them for a while they don't respond to position changes. And if you are little predisposed to migraines then these will get all confused with migraines. Basically if the migraines don't respond to the normal migraine meds, get this checked out. Basically when you see the docs suggesting narcotics for the pain more than once in a blue moon -- beware that's the time to start looking for a fresh look from doctors with a good diagnostic track record. Narcotics don't fix anything, they just hide it until it gets so bad they stop working and then you've lost lots of time and make fixing the problem harder.

Also, if you look around you'll see pain clinics run by groups of neurologists, and other clinics run by oral-facial pain and specialty dentists and anethesiologists and ENT's. For some odd medical political reason I can't begin to understand these two groups don't get along and so often catch things the others leave undiagnosed (cluster-tic syndrome among them). Anyhow, if you've been to one sort of group and had no luck go to the other because they have totally different perspectives and things they look for. My sense is the neurologists tend to practice what they were taught in medical schools and the other groups try harder at staying current and have some more diversity.

Rule #1: Do Not Give Up.
Rule #2: Lots of Narcotics -> Time for a fresh look ASAP. Narcotics are bad news and temporary.
Rule #3: Those black boxes they put around some drugs that say 'can cause suicide in young people' -- they aren't kidding and most neurologists prescribe for older people they don't give it a second thought.
Posted 2/21/2010 7:20 PM (GMT 0)

DadofPainboy said...
CSF leaks around the spine (not around the sinuses) can be hard to find. Search the web for specific doctors and hospitals where they have a good track record for finding these and plugging them. "Double Jointedness" is a predisposing factor for such leaks. There are some and if you are going suffer through the treatments you want it done by folks who do it more than once a year. And whatever you do-- make sure you get this checked out before any treatments that cut nerves or otherwise can't be reversed.

I know what I'm talking about because we went to one of the super-specialty headache centers and most of the docs there saw the low CSF pressure and just ignored it, when the pain didn't go away after all their migraine treatments two weeks later a more senior doc reviewed the whole thing and said not only was it important but we'd be irresponsible not to have it checked out, and checked out by someone known to be good at finding them and dealing with them.

He also said that for a while low-csf pressure headaches will get better when you lie down with feet slightly higher than head, but after you've had them for a while they don't respond to position changes. And if you are little predisposed to migraines then these will get all confused with migraines. Basically if the migraines don't respond to the normal migraine meds, get this checked out. Basically when you see the docs suggesting narcotics for the pain more than once in a blue moon -- beware that's the time to start looking for a fresh look from doctors with a good diagnostic track record. Narcotics don't fix anything, they just hide it until it gets so bad they stop working and then you've lost lots of time and make fixing the problem harder.

Also, if you look around you'll see pain clinics run by groups of neurologists, and other clinics run by oral-facial pain and specialty dentists and anethesiologists and ENT's. For some odd medical political reason I can't begin to understand these two groups don't get along and so often catch things the others leave undiagnosed (cluster-tic syndrome among them). Anyhow, if you've been to one sort of group and had no luck go to the other because they have totally different perspectives and things they look for. My sense is the neurologists tend to practice what they were taught in medical schools and the other groups try harder at staying current and have some more diversity.

Rule #1: Do Not Give Up.
Rule #2: Lots of Narcotics -> Time for a fresh look ASAP. Narcotics are bad news and temporary.
Rule #3: Those black boxes they put around some drugs that say 'can cause suicide in young people' -- they aren't kidding and most neurologists prescribe for older people they don't give it a second thought.

Thank you so much for sharing this valuable information, i was really looking for & was also consulting with my physician.
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