I directed you to this website to ask you, to contemplate my situation just for a few minutes. You are important to me, so the right time has come.
All this is much too complicated to explain it in just a few words. But I will try it for you, so that you will be able to understand me better, although this is an illness that is hard to understand – even for me.
My illness is called Pseudotumor cerebri (PTC) or Idiopathic intracranial hypertension (IIH). In my ears, both names sound like something that is just the imagination of a hypochoandriac.
But it is not that easy.
IIH is a very rare illness. It can not be healed til today. One person in a 100.000 sample are confronted with this illness in their lives. Men, women and even little children. Every year, 800 new cases become known in Germany. In the last years, only four of them were men, as far as you can trust statictics.
Please, feel free to write to me, after you stopped reading this very personal review.
Idiopathic intracranial Hypertension
My Pseudotumor is no imagined tumor. Fact is, my body acts as if I had a real tumor in my brain. You can trust me: doctors examined me inside out, head to toe, to find the cause. But they are still baffled about this puzzle. Medical specialists do not know what caused my pseudotumor cerebri (PTC). Til today, they can only treat the condition. I sometimes feel like a medical laboratory guinea pig. Sometimes I even wish they would find a tumor, because that would define the cause clearly.
What does a pseudotumor do exactly?
In the brain, cerebrospinal fluid – so called liquor – accumulates all the time. Normally and with healthy people, the liquor can drain. In my body, unneccesary liquor is produced and can not drain well enough. Because of that, I experience a liquor congestion in my head. My brain is crushed – in the true sense of the word – by my own cerebrospinal fluid.
The most severe consequence of a pseudotumor are effects that affect the optic nerve, for in almost all patients with pseudotumor cerebri a stasis papilla is formed. In the worst case, I will be blind someday. To experience blurred vision, to see double images or crooked lines where lines are straight, that is an integral part of my everyday life. Visual disturbances of all kinds, depending on my daily constitution, are the typical characteristics of IIH. There are people who always experience sudden blackouts when they move. That’s a bad thing, honestly.
In adition, we experience devastating headaches, the impact of which are unimagineable to you. It is really hard to describe them because they can appear in various forms every time. Sometimes you experience a violent pull, sometimes they are throbbing, sometimes they hit you like an ax that is directed at the skull. Many people confuse these headaches with migraines, but this can be a trap. What helps, is to lie flat in your bed and stay calm. Sometimes it gets better when you lie down. Nausea and vomiting also belong to the repertoire of IIH .
A pulse-synchronous tinnitus is typical for PTC patients. Everyone who suffers from PTC has experienced a tinnitus at some time. Some people will suffer permanently. This can make you mad. Because of the various prescribed drugs, about which I will tell you afterwards, the performance of hearing is declining. Permanent ringing, rustling, and whistling wear me down.
An essential feature of PTC is, that – depending on the daytime and although noone would suspect that in me – I am practically worn out if I only have to walk a few steps. I usually just manage to cross the road. After that, I would prefer to go back to bed, because I am totally finished. I am constantly tired, feeling exhausted and I feel no desire to do anything, and certainly I feel no inner drive. Being experienced, I know in advance how I will feel afterwards. That’s why I do not go out at all. My entire body is a continuous area of pain!
Washing dishes, tidying up, small things: Perfectly normal daily housework became largely unsolvable tasks for me. Some days I manage everything at once. On other days I can not even heave my ass to the bathroom. Nothing works on such a day. This condition can last for weeks or just some hours. I am unable to take influence, but it makes me angry, because I feel ashamed of being so useless.
We are grown-up people. So I’ll tell you something about the effects on my sexual performance:
IIH makes sure that any desire for sexual pleasure gets lost. I just do not want to develop any. It is so hard for me to get close, because I feel very damaged. As I described, I’m out of breath after the slightest effort. This is not different in sexual matters. In the rare cases, when sexual desire is aroused, I am somewhat unable to engage myself fully. My experience is almost static and I do not experience sex as fulfilling as it should normally feel. In my head, something explodes. But my darned body does something completely different, which feels strange to me. Specifically in this matter, I want my health back!
Editor's note Some physicians seem to advise their patients to avoid orgasms, because these can increase the brain pressure to a dangerous degree for a certain period of time. So far, however, scientific studies are rare. However, physical signs of overload reactions are known among the IIH sufferers and have been adequately described by scientists. Whether this leads to the medical advice to refrain from orgasms, can not be said with certainty at the moment.
A steadily declining self-esteem and reduced self-awareness due to constant setbacks in therapy, are only some of the psychological consequences. The restrictions in everyday life leave their traces in the soul. The less energy there is available, the more difficult it is to deal with it.
It gets even worse for me when I am asked to do some things.
No one would expect a professional footballer to take part in a game beetween friends with a broken leg, or he would be in great trouble.
However, in my private surroundings, with an almost invisible illness, unfortunately this happens to me again and again. Such an experience leaves deep holes in my heart and my soul. It hurts me endlessly! I became depressive.
Because of such and similar “stories”, which I would like to call social carelessness, I somehow feel surrounded by people, but I will nevertheless ever get rid of a profound and deeply felt loneliness.
Me and all other disabled people in this world have a single desire in common: that of painlessness. I wish to be “normal” again and enjoy my life properly.
Things you should never say
People with serious illnesses are treated with respect – and that is what I expect from you. It just makes me very sad when I get to hear sentences like these:
“You should go out more often.”
“You should do more sports.”
“A friend had similar symptoms, and he’s doing well again”
“I would like to stay home as much as you do.”
“You should not let yourself down so much.”
“This is definitely only psychosomatic”
“One does not realize that you are so sick.”
“You should lose some weight, that helps”
Comments like these are wrong and on top of it, they are also discriminatory, because they let me know that I am the sole cause for my illness. But that is, as you now know, not the case. I therefore ask you to take this matter seriously and support me with respect and empathy, so that I will be able to lead a pleasant life to some extent.
I really would like to keep you in my life as an important part of it.
Neurological & psychiatric effects
Typical symptoms of neurologic failure due to the excessive brain pressure are uncertainties while walking, dizziness and balance disturbances which can lead to sudden unconsciousness. Here, too, it really depends on the daily condition I experience. Usually, things are not half as bad. On other days, I do not feel fit to walk even millimeters without grabbing for something to hold me. In essence, the feeling of instability and insecurity is sufficient enough to really become insecure.
Neurological side-effects of medications are tingling paresthesias. This means that my arms and legs, my hands, my face, and everything is tingling as if millions of ants were under the skin. In this phase I am almost helpless and unable to do any kind of normal conversation, let alone work.
Editor's note Because IIH patients experience a lot of suffering pressure, psychotherapy is often recommended or even imposed in certain circumstances by their pension funds. It is important for the decision maker who decides about therapeutic steps, to consider that with the disease pattern of Pseudotumor cerebri, psychotherapy usually remains ineffective, because the side effects of the medication and the disease itself care for the patient's incapacity for therapy. In case of being forced into obligatory therapy, f. e precribed by the pension fund, you should contradict this immediately and, if necessary, add a statement from your neurologist, which indicates that you are incapable to go through therapy because of IIH.
Where the brain is damaged, all areas are suffering quite differently. Ongoing pain, pressure from your social environment, therapeutic pressures, prescribed medicicals, health insurance companies and doctors. Every single instance is sending PRESSURE, which is the last thing that I need. I need peace and harmony, so that all this is taken away from me and all additional burdens will be removed.
Increased irritability is an expression of an overload of challenges and it can only be understood this way. Whatever I may say, is not meant personally, even if it sounds like that. You have to trust me in this regard and try to see in me the person you liked, because I am still this person. In stressful situations, my inner fuse might pop out, but believe me: Nobody regrets this more than me! The best thing to do, is: to let the steam wear off. Then you can come to me and try to talk. With humor we will manage to get things straight again. You are very important to me even when I explode! But in the moment, I fear, you have to count explosive moods in…
Loss of memory
What an evil thing! In fact, everything begins quite harmlessly. A missing word here, a forgotten name there. There are cases where the affected persons lost whole languages they once could handle. At all costs you have to count in that very often words are lost for me, if you a still have not realized that. I just can not remember what I wanted to tell you. Or I’ll go out for some task and come back because I’ve already forgotten what I was about to do. In other situations I will ask you what we want to eat in the evening, several times a day. I simply can not remember anything or retrieve anything that I once learned. Sometimes I have mislead memories of things that happened in a completely different way, but I am 100% sure that my version is correct. Creepy, hey?
No, this is sick – in the true sence of the word.
Editor's note Not very rare are developments, in which the medication with Topiramate increases the effects described so far, or even causes them. This can sometimes lead to disorientation or unconsciousness. In the latter case your family members should immediately react and call an ambulance via telephone.
As a standard therapy, medicical personnel has no other ideas as to subject me to regular lumbar punctures to lower the pressure. They introduce a long needle via the lumbar vertebrae into the spinal channel, in which the cerebrospinal fluid is situated. This is a disgusting and very unpleasant procedure, which can also be painful. When they finally manage to hit the right point, they drain some of the brain water so that the pressure will be lessened. After each of these treatments, which forces me into a hospital for a few days, I wait in vain for an improvement. A short-term effect – if any – may occur. In the long term, however, I already know on the day of my dismissal, that I have to return to the hospital very soon. Three days in hospital, at least a week flat in bed. The side effects of the lumbar puncture are inconceivably severe headaches associated with all possible effects which are similar to PTC, but somehow feel much worse.
What kinds of ideas can be expected from a doctor as to prescribe some medicine? Correct. Masses of medicine! Every single one of them is a real knock-down drug. I get tablets for draining, so I can at least lower the pressure or care for lesser pressure in the brain. None of these drugs are actually a specific medical preparation for a pseudotumor. It is always a drug that was developed and is used as a therapeutic medium in several fields of application. So, DIAMOX / GLAUPAX is actually a standard medication against glaucoma (green star), but I get it as an “off-label” prescription. TOPIRAMATE is an anti-epileptic which is also very likely used.
One pill here, one pill there, and something else treating their side effects – plus an additional pill that handles the side effects of all tablets precribed with the aim to fight the side effects of others. In a very short time, you become a valued “DIAMOND CUSTOMER” in the pharmacy in which you trust. No title I am proud of. Fortunately, even this is a sprout of my grim humor 😉.
Yes, there are possibilities to operate. These are, however, discussed controversial and fulfill their purpose only to a limited extent. Shunts are drainage systems that doctors could put into my skull. These are, so to speak, valves that discharge the excess brain water into the abdominal cavity or into a vein via tube. Basicly, however, there are risks of functional failures as well as the typical dangers of an open-cranial surgery. Moreover, there is no guarantee for a fundamental improvement. This is the trick within the story. Any health insurance company will only refund the costs for such an operation when the eyesight is directly in danger, this I have learned from my doctors.
Stents are implemented into people when one of the sinus veins shows a stenosis. This is no pleasant procedure, since afterwards many drugs have to be taken. Each operation has advantages and disadvantages. It can bring relief, but it will hardly cure.
This is probably the most serious point on my list. In fact, there are hardly any doctors who actually do serious scientific work. Doctors who would help me and my fellow-sufferers out of this shit. Sorry, but that had to be said! I walk from Pontius to Pilate without knowing if I will be taken seriously by the doctor in front of me. It’s some kind of magic box every time. You never know what comes out of it. Even neurologists, the specialists for my illness, usually have no idea what to do with me. That really sucks.
Editor's note Unfortunately and with an increasing tendency, young women are affected by pseudotumor cerebri. The prescription of particularly strong drugs, combined with the mode of action of the disease itself, present a high risk of miscarriages or infertility in the first months of the treatment. Additional risks are given by taking the contraceptive pill. In the event of wanting a child or in case of pregnancy, it is recommended to engage in conversation with your partner, a trusted physician and a gynaecologist. Be sure to tell your gynecologist and / or your midwife about your illness in good time before giving birth! Birth can occur under caesarean section when the brain pressure is altered in addition to IIH. Precise indications for further risks of PTC in pregnancy have only become known in very rare cases. Therefore, normal births are possible.
I am grateful for my circle of IH friends who are concerned with establishing a database containing all specialized medical practitioners and, finally, to promote more result-oriented research.
I also thank you for the time spent! Please contact me if you read everything.
You are a great person who has a firm place in my heart!
This loop (IIH awareness ribbon) is the symbol of hope for people suffering from pseudotumor cerebri around the world. It stands for the hope of healing, which at the present time, however, will be lacking for most of the patients concerned, due to lack of adequate research.
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