Not just a headache (My Experience of Benign Intercranial Hypertension/Pseudotumor Cerebri)

Member Name: Collywobs

Product:	My Experience of Benign Intercranial Hypertension/Pseudotumor Cerebri
Date:	17/03/01 (7014 review reads)
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Advantages: none

Disadvantages: takes over your life, intense pain, treatment, everything about this illness is a disadvantage.

Benign Intercranial Hypertension

Benign intercranial Hypertension is otherwise known as Pseudotumor Cerebri, when referring to the illness most doctors would refer to it as BIH or PTC for short.
Many people have asked me what it is, it's a very complicated and rare illness, it's not very easy to understand it all, however I shall try my best to explain.

BIH/PTC
It gets it's name because the symptoms replicate the symptoms of a brain tumour. What happens is swelling of the optic nerve causes intense headaches, the pain can really be extremely severe, I've been hospitalised due to the amount of pain I spent 2 weeks having pethedine, anti sickness injections and lumbar punctures, I also had severe visual disturbances. The symptoms are caused by high cerebral spinal fluid.
The symptoms are-
Headache- varying from person to person, some may only get a mild headache while others get a very severe headache, sadly I'm one of the unfortunate and get severe headaches.

Nausea and Vomiting- many people get these symptoms, again it differs, it can be helped by taking anti sickness medication.

Eye disturbances- I get double vision and blurred eye sight, your eyes are one of the main things to watch with PTC/BIH it can cause blindness.

Ear disturbances- a whooshing or pulsating noise constantly in your ears. When I say constantly I mean 24/7 it never goes and considering I am also deaf it's very hard to deal with, it cuts out the very small sounds which I used to be able to hear with hearing aids.

Stiff Neck- This is similar to having whiplash.

Dizziness/unsteadiness- I have been called a drunk due to me staggering at times, the problem is people presume too much rather than thinking what else it could be.


TREATMENT
The treatment is something which I never want anyone to have to go through, there are a few children with this illness and the thought of them en
during the treatment gives me strength in some ways but deeply saddens me that they have to have it in the first place.
Medication can help such as high dosages of Diamox and Amitriptyliene, beta blockers can also help but not everyone can take them.

Another treatment is surgery known as optic nerve sheaf fenestration , this involves going into the eye socket and making a cut to relieve the pressure.

The other treatment is fitting a shunt which constantly drains excess cerebral fluid from the spine.
The only real way to tell if a person has high cerebral spinal fluid is by having lumbar punctures, the lumbar punctures enables the doctors to get an accurate reading of how high a persons spinal fluid is, the fluid is drained from the spine and measured, so you are left with a normal amount of cerebral fluid. After this you have to lay flat for 3 hours before you are allowed home. It can be a very painful experience as I have found out.
Some people never have to bother with further lumbar punctures but most of us do.
I have been having lumbar punctures every month for the past 18 months, sometimes every 3 weeks. The doctors decided to see if a Ventricular shunt would help me. The only way to find this out is by doing Intercranial Pressure Monitoring- Believe me this sounds a LOT worse than it is. I was given a local anaesthetic , the doctor shaved part of my head, then I had a hole drilled through my skull, I was awake through out the procedure and it did not hurt, this was done on the ward and I was told I had a big advantage being deaf, I couldn't hear the drill ,which makes other people tense..
After the hole is made a probe is inserted into my skull, this is attached to monitor which gives the pressure readings all the time it is connected. This stayed in my skull for 24 hours. I've had this done twice now, the last time just a few weeks ago.
The results shown that I was not suitable for a shunt, so my treat
ment continues with regular lumbar punctures. I have to take high dose medications for the illness as well. The pain is always around, it's extremely hard to cope some days, but I do cope, I've been through the denial period, then the self pity, now it's a case of " I wont let it beat me".
This illness is not one that people are aware of, it's rare but needs to be out in the open so people can understand.
I made it my mission to find out everything I could about this illness, as I believe educating yourself means so much more, rather than relying on doctors who really cannot tell you much. The only way I have educated myself is by using search engines on the internet. There is not a lot of information about the illness for the UK, all my information, support and help has come through American web sites and PTC yahoo groups.
I've started my own message boards for BIH/PTC I wanted to let people in the UK know that they are not alone, the message board attracted people from the states, but I have received emails from people in the UK with this illness, I've built up a friendship with them and we communicate a lot. It really does help having someone who knows exactly what you are going through. What ever illness you have, look for some support from people with the same illness, put a search in for forums or message boards, you don't have to be alone. Better still, start your own support group.
Thank you for taking the time the time to read this long opinion.

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