Idiopathic Intracranial Hypertension (Benign Intracranial Hypertension; Pseudotumor Cerebri)?

[Martian_Woman]

To make a long story short:  I was born in eastern Europe in 1988 where they diagnosed me with Idiopathic Intracranial  Hypertension when I was 1.5 years of age (1989).  I've had headaches my entire life, and there was a point when I'd get pain in my back so painful, it would paralyze me and for anywhere from several minutes to (usually) several hours.

I had also been overweight my whole life until 2004 when I lost 50lbs+.  I have since then gained much of the weight back, but never the way it had been previously.  The last 5 years have been a regression of my symptoms from childhood.  This past year I've developed ocular migraines (in which my vision has been completely obscured), random onset of dizzy spells accompanied by headache, nausea, stomach cramps and sweating.  These dizzy spells have become increasingly handicapping.  

I also have intense pain at the triangular point of my trapezius muscle--generally just below where my neck meets my back. I usually try to massage the area around there but constantly find myself trying to massage the naturally protruding bone.

I was recently prescribed a new pair of glasses that I can have disliked from day one.  I've so far felt they are far too strong for me and feel the prescription is incorrect.  At first I couldn't wear them for long periods of time, but now that I do, my dizzy spells seem to have increased and when my eyes strain (and they do), I have to take the glasses off and my eyes ache badly.  To add to this point, my eyes have become eerily sensitive to light.

Is the intracranial hypertension coming back or is this something else?

[Cath278]

Hi again. Ok, from what you have told me I think you need to go and see your dr and ask for a referral to see a Neurologist.
You havnt said how old you are but it sems it is a long time since a Neuro has seen you.
You need a complete work up to see a) what is causing your symptoms.
                                                                b) if, indeed, you have IIH.

This will be determined by a number of tests. Bloods, cat scan and a MRI to rule out anything else. Then , you will have to have a lumbar pucture. This will tell the drs your "opening pressure". In a normal adult it should be around, 11-13. It could be as high as 20-24 if the the paitent is very over weight. Anything over 20, with all the results from the other tests clear, will give you a diagnoses of IIH.


You also need to see a Ophthalmologist. This is to see  if you have paps.( Papillodeama) swelling of the optic nerve, a big problem with IIH. But not all patients with IIH have paps.

Tinitus, is a common problem with IIH as is , dizziness, vertigo, nausea,blurry vision to name a few. Also the pain you describe in your neck, shoulders.

Please go and see your dr.If you need any further help ,dont hesitate to conntact me. Cath278.

[Martian_Woman]

Hi Cath,

Thank you for your response.  As far as history is concerned, I was told I was diagnosed with IIH by my mother because I was too young (1 year, 5 months) when I was diagnosed.  Because of this, I don't know the specific of the procedure except that they "used some sort of 'Echocardiogram' thing" is what my mother told me (haha).  It has been years since I saw a neurologist and I believe I saw an ophthalmologist when I got my new glasses, and she seemed to think everything is fine.

I can add that I believe I have tinnitus.  When music is too loud or someone speaks too loudly, or if I sing for a long time, or even the traffic outside is too loud--one of my ears seems to "pop" (but not really pop) and a very loud buzzing/whooshing sound begins.  I need to completely stay away from anything loud for several hours for it to get back to normal, and then again, have the loudness stay within acceptable range.

I have immense back pain.  Recently all of my symptoms have gotten MUCH worse.  I was talking to a close friend on Saturday and told him about exactly what's happening to me.  Hours later it happened right in front of him (dizziness, nausea, sweating).

[Cath278]

Hi. Sorry to hear you are feeling so unwell. Could you give me a bit more history please? How long is it since you have seen a neuro? Ophthalmologist?
How did they digagnoses you in the first place? Do you know what your opening pressure was? Do you know if you have Papaillodema? ( swollen optic nerves)

All your symptoms can  fall under the umbrella of IIH symptoms but you would need a complete check up to comfirm it.
That would require a cat scan, MRI, to rule out any thing else,  and then a lumber pucture.

Please , make an appoitment to see your neuro in the near future. You can , of course , ask me any questions. Cath278.