I was diagnosed with BIH in 1984 just before I married my second husband. Now is that coincidence or what – anyway I started to think recently about what it means to me to have this condition and why I keep going into remission and then out again and somehow my weird warped sense of humour started to activate and here is what I came up with. Read it and laugh, read it and weep, for those of you who have it will understand, and those of you who care for those who have it will maybe gain an insight. These are my thoughts no one else can lay claim to them but if you do agree even slightly then please let me know.
Brought It Home – I really wish I had not got it but it was a stunner to hear about something so unusual, mind you like my mother says if you get something wrong with you why do you always have to make it unusual girl. I only went to the optician thinking I needed new glasses, and end up with a condition so rare, oh well maybe it wont be so bad. Then I had my one and only lumbar puncture and ended up with the biggest headache ever. Six weeks it took to be able to lift my head off the mattress without throwing up.
Banged It Here – it got so bad I started banging my head against the wall didn't feel any better just made me take my mind off the pains inside, like a road drill banging through my head. I could hear my heartbeat and would rip my hair out and try to get my eyes out to scratch behind them. "Yes&quo;, said the doctor, "that is the papillodeama causing that". Ok thank you for that valuable bit of information now what are you going to do about it?
Blast It Hurts – usually said between a lot of expletives just before I give up and go to hospital.
Being In Hospital – again and again with still no relief. Oh yes, the doctors know what it is and want to gaze lovingly into my eyes to watch the swelling but they don’t realise that yes I know it's a teaching hospital, and yes I know they are not likely to see this condition again, and yes I know they have to take the chance while they can to see something so rare, but please oh please stop the pain first. And by the way doctor I am very light sensitive and that ophthalmoscope is not helping and would you like it shoving where light doesn’t normally shine?
Believing In Highs – drug induced highs are wonderful but doctor is it really wise to get me so hooked on pethadin and morphine that I find it hard to function? and these diuretics are wonderful except I cannot move far from the bathroom for four hours out of every day. And then one day we get the famous line from one very inexperienced communicator otherwise known as a doctor – it wont hurt once the pain goes away – just as he approaches me with yet another needle. Well I would like to say to that doctor here and now what I would have said could I have formed the words through the pain at the time – b******* if you had this b***** condition you would be in this amount of f****** pain and if you ever do get this amount of pain I just f****** hope I am the nurse with the needle you incompetent idiot. Last part said as he hit a nerve in my arm and I lost all feeling in it for a few hours wish it could have been my head really.
Believing In Highs – pain free induced highs when the damned condition finally goes into remission for a while and I almost forget I have it. Strange how it seems to cycle over time personally I seem to get about eighteen months remission between the six months of it being back with a vengeance. Now for some years the thing was controlled by diuretics and strong pain relief which caused complications of their own and the occasional visit from the doctor to the home when things got too bad so I could have an injection and then some relief for a few hours. Well one day this new doctor arrives from my surgery and having examined me and thought about it for a few minutes makes the announcement – yes you are showing the symptoms of an atypical migraine but you have papillodeama and that is slightly concerning me so have this injection now and lets see how you are tomorrow. I end up mumbling it don't feel like an atypical migraine whatever that is it feels like I need to take my eyes out and scratch the back of them – said just before I pass out from the injection.
Being In Hell – so here we are back in hospital and suddenly I have a new condition. It's now called Idiopathic Intracranial Hypertension, ah ok so is this going to be any better than the last one? No, it's the same, only benign sounds as if it is not dangerous – oh ok doctor so now instead of being benign and calm and in control I am an idiot, and does that mean I can throw a wobbler whenever I want to and start throwing things?
Believing In Heaven – difficult to do when you are in the middle of an "episode" another doctor phrase – really do they think we are in a soap opera here and they are the ones who have to look good and give you platitudes when all you really want is for the pain to stop.
Believing In Hope – well we all have to, but really its so hard to believe in anything when all you want to do is crawl into a hole and pull the earth in after you when the pain is so bad you cannot function and the side effects of the medication mean you cannot function anyway.
So then we come to the next episode !!!! of the life of being a sufferer of a rare condition.
I'm In Hell – after a few years of being relatively free of symptoms and able to control the symptoms I did have with diuretics and pain relief even though the pain relief made me constipated I am out of remission and boy is it back with a vengeance. So off I go to the doctor again and this time he says oh you have diverticulitis caused by your lifestyle and your over use of pain medication. Now I have to ask myself here who prescribed this pain medication over the years and kept prescribing it? So here we are back in the emergency department laid on a so called bed and suffering the headache from hell when in comes this doctor with my notes in his hand which now are some six inches thick and asks the immortal question.
Is It Hurting – now if I could laugh I would, but it hurts to laugh, hurts to breathe, hurts to live, damn it do something instead of asking b***** stupid questions! Well he looks at me and goes on to compound his idiocy by saying....
Is It Hypertension again? – Okay, I know what you are thinking here – is she in an emergency room or Disney world? Well I will tell you I was beginning to wonder myself so between screams I let out a quite polite statement I thought, I really don't know why he took exception to it for I am normally quite mild mannered. What I said was, "Yes It f****** Is f****** Hurting and yes It b***** Is b***** Hypertension!" Okay, I know maybe I should not have said it with my hands round his err shall we say appendages, but honestly do you blame me for being just a touch upset? Anyway, he got a little upset and left and then brought his consultant back who thank goodness for sanity knew what I was suffering and gave me something to take the pain away.
Okay, so far so good. I am in remission again but still no one believes what I am going through and what is more important is no one seems to care. The husband is gone for he cannot cope with the problems. The doctors are offering me shunts with an 80% chance of paralysis. The only doctor who cares is my GP who doesn’t really know enough so he refers me to the neurosurgeon again who is new to me at least and seems to have some idea of what is going on and then comes the bombshell. "Oh", says this person, "it's not called BIH or IIH. Now it's PTC". "Oh, and what does this mean?", I ask, quite worried by now. "Well", says he, "it means pseudotumour cerebri, and we will do an MRI scan to check if that is in fact what you have". Okay, so now you are saying I may not have this whatever you want to call it? "Oh yes you have it. We just don't know how badly". So now I am back to 1984 when the first ophthalmic consultant I saw said he thought I had a brain tumour but it turned out to be BIH. Does anyone get the idea that over the last 19 years the thing has turned full circle? Sometimes I wish the original doctor I saw with this was still alive so I could hug him and ask him why he had to go and die and leave me with these nincompoops. Anyway so now I have PTC and it's caused severe loss of sight and they are still offering me the shunt. Now I am really scared and no one to turn to, so here I am back in hospital on my own, confused, scared, and suffering memory loss to go along with everything else.
Pass The Codeine – or any damn thing that will work to stop this pain. I keep going into remission then out of remission then in again till I feel like a yo–yo. Then I go to the optician again. Now you would think wouldn't you that opticians can see the back of the eyes with that thing with the light on the end, well no not always cause this one cannot see the papillodeama despite the fact I know its there and the ophthalmic consultant says, "oh yes you have it and its making you go blind". "Oh fine", I say through gritted teeth, "and what are you going to do about that?" He says time will tell. Yeah right.
Passing Time Counts – so time passes and here I am two years down the line suffering again like hell is going out of fashion when suddenly I find on the internet all this information about something called PTC. It's like my eyes are suddenly opened, pardon the pun, and I find that I am not neurotic, hypochondriac or stupid, that all the symptoms for the past 19 years are real, that all the symptoms people suffer from including ovarian cysts, blindness, cancers, headaches, insulin resistance, testosterone overload, diverticulitis, headaches, migraines, headaches, sore neck, facial tic, facial hair, hair loss, blood clots, all manner of wonderful things including headaches, oh and did I mention headaches really do exist and this is not a full list? Well you could have blown me over with a feather (except I am allergic to them and my own hair and penicillin).
Please Take Condition – please hear my prayer. So I decided to take matters into my own hands after all Diamox is likely to do permanent harm to my body over a long period of time and anyway the damn thing makes me tingle with pins and needles and Coke tastes awful. So off I took myself to a homeopath and wonder of wonders she didn't laugh at me, she didn't tell me it was all in my mind. She took two hours to talk to me and find out what was happening then she went to her mentor and I ended up spending another two hours talking to them, and wonder of wonders the remedies seem to be helping. So far that is. And the other good thing is that I have someone now who cares for me in my worst moments. He looks after me stops me scratching and helps me through the depressions and mood swings. He cares and that means so much to us all when we are at our worst. Sometimes though I wish I could tell him how much all this means to me. Maybe when he reads this he will know.
Pass The Contacts – maybe it's time we took a stand. People don't know about PTC just like they didn't know about irritable bowel syndrome till some famous people got it and started opening up about it. And many of us have that too. Well maybe it is time we started educating people about this condition starting with the doctors who blandly say well it is rare and you are not shouting loud enough (how do they expect us to shout when sometimes it hurts just to whisper) so we are not going to do anything about it. If we go to the hospital they look at us as though we are drug addicts after a fix. If we go to our own doctor they often don't know enough about it to help realistically.
I am currently out of remission and going through hell. I know many are in the same position. Please let's do something about it. Let's show the media and the doctors and people in general that living with this is not good. I am just one amongst many. Statistics say that 3 in 100,000 women have PTC and less men. Some say we are all overweight and dismiss us as neurotic. WRONG. If all overweight people suffered from PTC then the statistics are wrong. Current research in the USA by a Doctor Glueck (hope I spelled that right) links PTC like this: in the majority of cases of women with PTC it started with PCOS (ovarian cysts) which leads to having the ovaries removed often with a hysterectomy, or trouble conceiving, which leads to weight gain probably as a result of becoming insulin resistant without developing diabetes which probably leads to PTC. Now if you follow this reasoning it makes sense. The majority of women who weight gain and develop PTC gain weight around the abdominal area and often look pregnant.
Ok I know I am rambling and I don't have the full data to hand but what I do want to say is this. This is my story and from what I have seen it is repeated around the world. Possible triggers to PTC coming out of remission may be tetracycline antibiotics, some birth control pills, some herbs, and even in New Zealand a study has shown that tamoxifen, the cancer wonder tablet, may also trigger it.
From a personal point of view I have had enough of being BULLIED INTO HYPERTENSION because the doctors don't believe me or being told I'M IN HEAVEN when I know I'M IN HELL, and finally I am sick and fed up of PUTTING up with THIS CRAP.
© Linda Dixon, 2003, known as Rose
Wow! 4 years since I wrote that, how times have changed. I have a new job and a new life alone, my boss is wonderful and understands the effects this condition has left me with. She regularly tells me to log out and log back in, just like you have to do with computers when they freeze. She tells me to go take pain killers when she hears me complain about the smell of burning, (one of my triggers that tells me I am going to have a humdinger of a headache.) She understands when I cannot speak properly and it sounds as if I am drunk because I slur my words.
I went to spend Christmas and New Year in hospital just after I wrote the above, then I found a new consultant who actually seems to know what is going on. He tells me my peripheral vision loss will never improve but is doing six monthly checks to make sure it does not get worse. My GP has actually researched this condition so he can help me better. I can actually ring the surgery and tell them what I need and they give me a prescription, they actually listen.
Is the condition better? Hell no! The consultant though he is good actually made a heck of a statement recently when he told me he doesn't see anyone with this condition in their 60's or 70's. Then he makes it worse or laughable by saying, "You will grow out of it".
Oh well, that's ok then says I, so I will grow out of it WHEN EXACTLY? I have had it now for 22 years, and tell me do these people that you never see in their old age with this condition actually still come to see you, or have they given up, or better yet died of something else? "Well", says he, "I don’t really know".
So here we are, am I down about it, yes sometimes. Do I want to kill myself with the pain? Yes sometimes. Do I wish I could grow out of it? Yes, all the time. Do I understand people better who have various illnesses because of this condition, yes definitely.
I am lucky so lucky> Many of us are disabled by this to the extent they cannot go out, work, live anywhere near a normal life. At the moment I can work, shop, drive, live life. I have to work round the headaches – another thing about an understanding boss, she allows me to work from home, come to work late, go home early, because she knows that when I am well I work all I can.
I cannot give you platitudes about how it will get better because it doesn't. It does get bearable most of the time. The homeopathic stuff still works, and I don't take Diamox or any of the other so called wonder drugs. I do resort to pain relief and the occasional diuretic. I am still willing to try anything that is not chemical and recently have started on vitamin B6 which has solved some of the side effects.
I joke to stop the tears, and whatever deity you believe in please pray for those of us who live with the forgotten illnesses. Forgotten because they are not common enough for people to care enough. As far as we know there are no celebrities with this condition – human frailty suggests if there was then we would get the high profile we need to get the research in this country.
Thanks for reading this. Do not pity us, we do not look for pity. Those of us who can still look, see each other and we know that we are not alone.
© Linda (Rose), 2007.