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Secondary cough headaches - possible Chiari?
I'm having a CT done today because it's all my current CNP will agree to. Ever since middle school (I am now nearly 30) I have experienced what I can only describe as secondary cough headaches. I never saw a doctor about them growing up, and now am finally seeking answers but feel like I'm getting nowhere. I have been researching this phenomenon for years now and feel that this is the only real answer - the other possibilities (tumors, aneurysms, injury) are either not likely or impossible. The symptoms I have match: when I cough or otherwise strain (any Valsalva maneuver) I get a pounding headache that starts in the back of my head and works its way to the front, that sometimes leaves me squeezing my eyes shut and trying to breathe through it. It only happens when I strain, it is ALWAYS pounding and severe, and it goes mostly away after maybe half a minute to a minute but occasionally lingers longer. When I am sick it leaves me in agony if I am coughing all the time. However in 2011 I had Bell's palsy and had a CT done and nobody noticed anything irregular (although it was done in the ER and not by a neuro). I have Medicaid currently so my options are limited for specialists but after today's CT is done I intend to get the results myself and see if I can get into a neurologist. There are not many options locally so unfortunately if I can't get into someone then I will not be seeing anybody. :( I also have an astigmatism, swallowing issues, and frequent problems with numbness/tingling in hands and feet. These all lead me to believe I may have CM1.
Does it sound like I am on the right track here? Does it seem like I am correct in thinking this may be CM? I am worried with it being a CT that they will be looking for brain issues and not so much skull (although I specifically said several times I believe it is a skull issue, not so much hemisphere-brain-problems).
Does it sound like I am on the right track here? Does it seem like I am correct in thinking this may be CM? I am worried with it being a CT that they will be looking for brain issues and not so much skull (although I specifically said several times I believe it is a skull issue, not so much hemisphere-brain-problems).
Pseudotumor cerebri is now called idiopathic intracranial hypertension actually, I just didn't remember the name when I wrote this to you.
But if your ct showed no signs of high pressure and everything else normal..
Do you have any symptoms of high pressure other than headaches: Headaches that are worse in the morning, worse when lying down, seeing like underwater or hearing like being underwater, vision loss, vomiting, hallucinations?
If not, then you can rule high pressure out.
You said you didn't believe in migraines or tension type headaches. Remember that these are just classifications, nobody knows what the hell they are. In the future when more is known there might be more classes than just these two, or they will put them together as just one and the same. Who knows?
You should know that even if you have the exact symptoms of a brain tumor it is still more likely that you have migraine than tumor. But then a tumor must be ruled out obviously. So why don't you believe in primary headaches? There is no way of ruling them out by symptoms since they can mimic any other known condition any give any kind of symptoms. And there is no test to rule them out.
I have some good medicine suggestions for you: Amitriptyline (works for almost all kinds of headaches), propranolol (works for migraine), indomethacin (works specifically for cough and valsalva type headaches).
The probability that at least one of these will help you is very big. Discuss them with your doctor.
If you are still worried about the intracranial hypertension the probability is low but there is one more test you can do. You can have a lumbar tap where they measure the opening pressure in your spine. It is not an exact test but it can give a clue.
If I were you I would not do it. I would just lose weight, take a medicine and maybe check with an eye doctor every six months just to see that no signs of high pressure or vision problems develop.
You could also do a MRA, which is a magnetic camera programmed to see the blood vessels only. Just to rule out that you have any aneurysm or blood vessel malformation that is leaking out blood when you strain. But the probability of this is very low.
How is your neurological examinations? Any signs of nerves not functioning properly?
But if your ct showed no signs of high pressure and everything else normal..
Do you have any symptoms of high pressure other than headaches: Headaches that are worse in the morning, worse when lying down, seeing like underwater or hearing like being underwater, vision loss, vomiting, hallucinations?
If not, then you can rule high pressure out.
You said you didn't believe in migraines or tension type headaches. Remember that these are just classifications, nobody knows what the hell they are. In the future when more is known there might be more classes than just these two, or they will put them together as just one and the same. Who knows?
You should know that even if you have the exact symptoms of a brain tumor it is still more likely that you have migraine than tumor. But then a tumor must be ruled out obviously. So why don't you believe in primary headaches? There is no way of ruling them out by symptoms since they can mimic any other known condition any give any kind of symptoms. And there is no test to rule them out.
I have some good medicine suggestions for you: Amitriptyline (works for almost all kinds of headaches), propranolol (works for migraine), indomethacin (works specifically for cough and valsalva type headaches).
The probability that at least one of these will help you is very big. Discuss them with your doctor.
If you are still worried about the intracranial hypertension the probability is low but there is one more test you can do. You can have a lumbar tap where they measure the opening pressure in your spine. It is not an exact test but it can give a clue.
If I were you I would not do it. I would just lose weight, take a medicine and maybe check with an eye doctor every six months just to see that no signs of high pressure or vision problems develop.
You could also do a MRA, which is a magnetic camera programmed to see the blood vessels only. Just to rule out that you have any aneurysm or blood vessel malformation that is leaking out blood when you strain. But the probability of this is very low.
How is your neurological examinations? Any signs of nerves not functioning properly?
MRI produces clearer pictures of the soft tissues and is preferred when it comes to diagnosing chiari or other intracranial diseases. A ct scan is also ok, not as good but usually sufficiently good. A ct scan is actually better when it comes to bone abnormalities, mri better at soft tissues. When it comes to chiari a mri is better but ct sufficient.
To say that chiari is a skull deformation is a matter of nomenclature because what it is is that the lower parts of the brain and the skull (and the junction between skull and spine) is not sitting in proper relation with each other. So you could say that it is the skulls fault or the brains fault or whatever but basically it is the relationship between them that is abnormal. There is also speculations about a condition called chiari zero where the relations look normal but where the flow of cerebrospinal fluid anyway experience turbulence and therefor is impaired. But if this exists it is anyway extremely rare probably.
Most problems with chiari does not come directly from the fact that the brain sits too low, it stems from the fact that the pressure inside the skull and brain increases. The reason for this though is that the csf can not flow properly because the brain sits too low and obstructs the flow.
If your ct scan is normal you don't have chiari. Unless the radiologist made a mistake or you have "borderline" chiari, in which case it becomes a matter of judgement from the doctor. But then the report should mention some herniation.
To say that chiari is a skull deformation is a matter of nomenclature because what it is is that the lower parts of the brain and the skull (and the junction between skull and spine) is not sitting in proper relation with each other. So you could say that it is the skulls fault or the brains fault or whatever but basically it is the relationship between them that is abnormal. There is also speculations about a condition called chiari zero where the relations look normal but where the flow of cerebrospinal fluid anyway experience turbulence and therefor is impaired. But if this exists it is anyway extremely rare probably.
Most problems with chiari does not come directly from the fact that the brain sits too low, it stems from the fact that the pressure inside the skull and brain increases. The reason for this though is that the csf can not flow properly because the brain sits too low and obstructs the flow.
If your ct scan is normal you don't have chiari. Unless the radiologist made a mistake or you have "borderline" chiari, in which case it becomes a matter of judgement from the doctor. But then the report should mention some herniation.
COMMUNITY LEADER
Just a FYI- many with Chiari are prone to auto immune and connective tissue disorders....I mention this bcuz you stated you have a thyroid issue...one auto immune issue many of us share is Hashimoto's Thyroiditis...
Do talk to your Dr about this connection as welll....
A CT can show a Chiari Malformation is there a MRI may show a more defined area....
A CINE MRI should be done if Chiari is DX'd as well as a MRI of the cervical, thoracic and lumbar spine to rule out a syrinx, disk issues, tethered cord and then testing for other related conditions.
Many Drs are not aware how Chiari can and does affect us ,so do look into getting copies of your MRI's, CT's and all other testing results and reports.
CT results have come back normal though they indicated I have a sinus infection (which I was aware of and is unrelated). I have never heard of the pseudo tumor cerebri and appreciate the mentioning of it, I will look into it further. At this point they are still insisting that these are tension headaches but they do not occur like nor function as tension headaches do and thus I am positive they are not. :( I am moving to a new PCP on the 22nd and will discuss it further with her after we have hopefully started to resolve my thyroid issues.
Nothing else about my headaches indicate migraines - and none of the other noted signs of intracranial pressure. I am definitely overweight (working on changing that) but am very lucky that other than occasionally fear-induced high BP and hypothyroidism I am very healthy.
I was under the impression that an MRI was the best way to diagnose chiari, and that a CT was potentially useful but not as much as an MRI. Was I misunderstanding this?
Nothing else about my headaches indicate migraines - and none of the other noted signs of intracranial pressure. I am definitely overweight (working on changing that) but am very lucky that other than occasionally fear-induced high BP and hypothyroidism I am very healthy.
I was under the impression that an MRI was the best way to diagnose chiari, and that a CT was potentially useful but not as much as an MRI. Was I misunderstanding this?
Cough headaches and exertion headaches are usually associated with raised intracranial pressure, of which the most common cause is chiari type 1. But there are others. There can also be other reasons than raised intracranial pressure for your headaches, for example AVMs or, of coarse, primary headaches. You are a bit too young to have what is called as primary cough headache but it could be due to other primary headaches, migraine for example.
It is probably important for your doctor to know if you have any other signs indicative of raised intracranial pressure; muffled hearing, seeing underwater, feeling of eyes popping out, vomiting, headaches in the morning etc, or if you have other indications of migraine.
The tingling also points to possible problem from the neck region or possible AVM.
If you are over weight you could also possibly suffer from pseudo tumor cerebri which is a condition usually found in young over weight women where the intracranial pressure is raised even though no underlying cause for it, such as chiari or tumors, are found. Signs of raised pressure can usually be spotted on scans.
Best would be if you could have at least a mri of the brain with gadolinium contrast and a visit to a neurologist.
It is also important that the radiologist looks for other signs of high pressure, flattened eye bottoms, optical nerve sheet deformation, empty sella etc.
The gadolinium is good for detecting dural thrombosis if present, since this is another common cause of raised pressure, besides chiari 1.
A ct scan is sufficient for most purposes though. And a radiologist should not miss any of the other signs, even if mistakes apparently exist.
But it might be important for you to know that they don't just look at the skull, the ct scan is actually better for looking at bones than the mri. They look at the whole brain and for good reasons.
If the scan shows normal condition within the skull base region plus no signs of increased pressure in the brain, and you experience no other symptoms of increased pressure, then you can be fairly certain that your problem does not come from chiari or any other type of pressure increasing condition.
At least you will soon have the answer.
It is probably important for your doctor to know if you have any other signs indicative of raised intracranial pressure; muffled hearing, seeing underwater, feeling of eyes popping out, vomiting, headaches in the morning etc, or if you have other indications of migraine.
The tingling also points to possible problem from the neck region or possible AVM.
If you are over weight you could also possibly suffer from pseudo tumor cerebri which is a condition usually found in young over weight women where the intracranial pressure is raised even though no underlying cause for it, such as chiari or tumors, are found. Signs of raised pressure can usually be spotted on scans.
Best would be if you could have at least a mri of the brain with gadolinium contrast and a visit to a neurologist.
It is also important that the radiologist looks for other signs of high pressure, flattened eye bottoms, optical nerve sheet deformation, empty sella etc.
The gadolinium is good for detecting dural thrombosis if present, since this is another common cause of raised pressure, besides chiari 1.
A ct scan is sufficient for most purposes though. And a radiologist should not miss any of the other signs, even if mistakes apparently exist.
But it might be important for you to know that they don't just look at the skull, the ct scan is actually better for looking at bones than the mri. They look at the whole brain and for good reasons.
If the scan shows normal condition within the skull base region plus no signs of increased pressure in the brain, and you experience no other symptoms of increased pressure, then you can be fairly certain that your problem does not come from chiari or any other type of pressure increasing condition.
At least you will soon have the answer.
COMMUNITY LEADER
It's fantastic you have all those ruled out already as it should help narrow the field a bit and direct your Drs toward what is going on.
Good luck and do keep us posted on what you find out.
Lupus has been ruled out. I am discussing EDS with my provider as I do have hypermobility issues (they are not necessarily bad) and some other symptoms that match up with EDS. Unfortunately my primary is not thrilled that I am walking in with a list of symptoms and asking if it is _____ or if we can test for/look for ______ so I am in a bit of a lurch with that. :) I will likely be changing providers soon for that reason. It is not Lymes as I have never been bitten by a tick, not MS - there are a few things at least that have already been looked for. The CT and report should be available tomorrow and I will definitely be getting a copy! Thank you!
I have this type of head pain. And its my worse symptom I had a ct scan first and it wasnt diagnosed. Then an mri i wasnt diagnosed. My 3rd mri after still complaining of these headache and vision issues I was finally diagnosed. I asked the doc and he said it was visable on all 3 scans ... so dont let them tell you there is nothing wrong! If u believe something is wrong TRUST your instinct ... I did and I was right.
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
While your symptoms do match up for possible Chiari ...there are several conditions that share symptoms so we all have to have them ruled out...MS, Lymes, Lupus as well as related conditions such as Syringomyelia, ICP, POTS, tethered cord, Ehlers-Danlos.....
I know this may seem daunting and frustrating but there is no way to tell just from symptoms.....do request copies of both your CT and report of the CT,
It can depend on what the CT is RX'd to look for as to where and how they set it up.....but , I also know that sometimes it is found when they are not looking....the bigger issue is will they recognize it and report it.
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