Hi. I'm sorry to hear that you're always in pain, though I can relate. Fortunately (somewhat) I have had a lot of pressure with these things.
Here's how the International Classification of Headache Disorders guide (2nd edition) classifies the diagnostic criteria that need to be present in order to accurately make the diagnosis of Idiopathic Intercranial Hypertension:
7.1.1 Headache attributed to idiopathic intracranial hypertension (IIH)
Previously used terms:
Benign intracranial hypertension (BIH), pseudotumor cerebri, meningeal hydrops, serous meningitis
A. Progressive headache with at least one of the following characteristics and fulfilling criteria C and D:
1. daily occurrence
2. diffuse and/or constant (non-pulsating) pain
3. aggravated by coughing or straining
B. Intracranial hypertension fulfilling the following criteria:
1. alert patient with neurological examination that either is normal or demonstrates any of the following abnormalities:
b) enlarged blind spot
c) visual field defect (progressive if untreated)
d) sixth nerve palsy
2. increased CSF pressure (>200 mm H2O in the non-obese, >250 mm H2O in the obese) measured by lumbar puncture in the recumbent position or by epidural or intraventricular pressure monitoring
3. normal CSF chemistry (low CSF protein is acceptable) and cellularity
4. intracranial diseases (including venous sinus thrombosis) ruled out by appropriate investigations
5. no metabolic, toxic or hormonal cause of intracranial hypertension
C. Headache develops in close temporal relation to increased intracranial pressure
D. Headache improves after withdrawal of CSF to reduce pressure to 120-170 mm H2O and resolves within 72 hours of persistent normalisation of intracranial pressure
IIH most commonly occurs in young obese women.
Although the majority of patients with IIH have papilloedema, IIH without papilloedema is observed. Other symptoms or signs of IIH include intracranial noises, tinnitus, transient visual obscurations and diplopia.
So, while I don't know a lot about the rate of occurrence of IIH, the list of required symptoms makes it seem rather uncommon (papilloederma, a larger blind spot, another visual field defect, and especially sixth nerve palsy). So, though the fact that you didn't have any abnormal levels of biochemicals while having increased CSF does meet the other criteria, I imagine that if you were experiencing any of the problems in criteria category #2 you would have mentioned it. I do know that increased CSF pressure is common with other conditions such as "Headache attributed to intracranial hypertension secondary to metabolic, toxic or hormonal causes" and "Headache attributed to intracranial hypertension secondary to hydrocephalus."
Honestly, it isn't all that important given that in nearly cases of all three of those conditions, when CSF is withdrawn from to spine to decrease the pressure, the headache symptoms desist. So, while it seems like an unpleasant thing to go through, it's great that you have a very promising treatment available. Really, idiopathic just indicates that the cause of the high CSF pressure is unknown--if this ends up being the case then you can join the grea t club that so many of us are in in which there is absolutely no discernible cause of the horrible pain. Anyway, be sure to at least discuss thring having some CSF drained.
While you're right to keep in mind that being at a healthy weight and not takinbg the pill do reduce stress on your body and, subsequently can decrease you risk of certain health problems. However, CSF can appear in very diverse circumstances. As far as I know it's not generally expected to have a strong correlation to being not very overweight or taking normal medications though weight loss is recommended in some individuals showing signs of IIH (which, again, is not conclusively determined by measuring high CSF pressure) and, if there is any compelling reason to suspect that any medication that you are taking is leading to high CSF pressure or IIH. Increased CSF pressure is known to be a potentially major facor in causing head pain, it is rarely something that is tested directly via lumbar puncture (aka spinal tap) because of the low likelihood of finding a problem paired with the often unnecessary pain and potential risk associated with the test/therapy.
Also, the result of measuring CSF pressure directly in that way are not sufficient to conclude that IIH is present (which makes me somewhat surprised by Ayonymous girl saying that she is going have a lumbar puncture done to test for IIH--A.G., do you have the associated visual distrubances that characerize IIH? If not it is very uncommon for a neurologist to see sufficent reason to perform this test when positive results are so unlikely and the fact that a large number of cases of IIH can be detected by simple, noninvasive, MRI or CT scan. Usually if the brain image does not show signs of dangerous intracranial pressure and the visual problems are not identified it is determined that the very low liklihood of IIH in those circumstances does not warrant the test. Even in cases where high CSF pressure is already confirmed, the diagnosis usually needs to be supported by the results of such as other tests as well as the very noticeable visual problems. This is why I have not yet had a lumbar puncture despite being treated for years with very idiopathic symptoms). You should also be aware of the history of false-positive results in measuring CSF pressure. Patient anxiety prior to and during the puncture, which is oftne accompanied by tensing ones muscles and too much flexion in the knees as if to brace for the insertion of the needle into the skin and through the dura.
Also, regarding dosulepin: I have not taken it personally but I have read that it is a tricyclic antidepressant that is also sometimes effective in treating chronic pain. There are many other trciyclics that are more commonly used and generally regarded as stronger than dosulepin. It is more commonly prescribed to patients who also complain of insomnia and/or decreased appetite. Be patient waiting to experience relief while the concentration of the drug builds up in your system. It can sometimes take more than a month before any noticeable change occurs. I don't know what dose you've been prescribed but a common level to start at is 75 mg, which can be increased to over 200mg over time. Unfortunately that means that you may not know how effective the drug is for you for many months, though this is common with almost anything that you try. If you do not experience relief from the drug you ought to think about talking to your doctor about trying topirimate/Topamax. Not only is it one of the most successful daily headache preventatives, but it is also commonly used as a reliable treatment for IIH. So even if it is still known whether you are suffering from this condition at that time, iyou will be started on a potential treatment that will help even if you are found to have normal or safe cranial pressure.
One more thing: sorry if I'm mistaken in this observation but it seemed that you or one of the other posters might have mistakenly gotten the notion that a spinal tap is at all diferent from a lumbar puncture. I apologize if this is not the case, but I just wanted to clear that up (the older, less commonly used and less technical term is spinal tap.
Good luck charliegirl I hope you find that the CSF pressure is not indicative of a greater problem! Remember to pay close attention to any changes in your vision though--untreated IIH can cause slowly but progressively worse problems.
Take care ,
DX: NDPH, Recovered CRPS
RX: Lamictal, Provigil, Clonazepam, Ambien CR, Emsam, Namenda, Oxycontin, Oxycodone
PRN: Haloperidol, Zyprexa, Lodine, Zofran, Skelaxin