Being a Mum, living with IIH (Idiopathic Intracranial Hypertension)

Jeannine - posted on 01/05/2012 ( 1 mom has responded )

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Hi there, my name is Jeannine

I am 34, wife of a wonderful husband and mother of three amazing, albeit "typical" children.



I was diagnosed with IIH (Idiopathic Intracranial Hypertension) 10 years ago but the doctors think I have had this illness close on 20 years! I also have a rather complex blood clotting disorder (Factor VIIIc (Von Willebrand factor), low protein S and a Prothrombin Gene Mutation (Gene 20210A) and I have been recently diagnosed with Diabetes (as if it wasn’t enough yet...)



I do not know what to do anymore! In the beginning, they tried medication but the side effects were worse than the illness itself and that is saying something. Some of the liver and kidney problems I have now are being attributed to my taking Diamox for an extended period.

I have had 21 spinal taps (lumbar punctures) to relieve the pressure prior to my shunt surgery. In 2004, they took a 24-hour intracranial pressure reading and in 2005, they inserted a Ventriculoperitoneal shunt. That gave me relief for a short period of time but soon after the symptoms returned. Symptoms include severe headaches, nausea, severe neck pain, numbness and tingling of hands and feet, motor dysfunction, visual dysfunction, short term memory loss, insomnia, aphasia and some issues with comprehension, also black-outs and severe mood swings and many more, all to varying degrees.



I cannot remember the last time I did not have a headache, nor the last time I had a good, uninterrupted night’s sleep. Most nights I have to stay up until my body simply shuts down so I can get any sleep at all.

I cannot remember a time where any form of physical exercise did not cause the headaches to become insufferable. I used to love playing sports! I was a competitive swimmer and I took third place at the British Tang So Do (Korean Karate) Championships, I used to ride the Rodeo, play Volleyball and Handball, used to do gymnastics and Judo. Now I cannot even go up and down our stairs a few times without the headache getting so bad that I am near passing out.

Most days, just getting out of bed is a real battle.



Due to financial difficulties, my family and I encountered as a direct result of this illness we had to move several times. I tried to work as long and as much as I could, but I was not able to hold down a job and I could not continue to work self-employed either. Now I cannot work at all, even though I really want to, as I love my job. I am a Make-up Artist and a good one at that... Because we had to move so often, I constantly had to change doctors and each time it was the same “Spiel”. In most cases had, they had never heard of IIH and if they did it was just vague information from a textbook somewhere. They then promised to read up and some of them did, some even actively tried to help me but got nowhere fast. There just is not enough information out there; especially it seems in mainland Europe.

I encounter so much ignorance, from doctors, the government authorities and just from people in general. I have been turned down for disability and it was suggested that I should not waste my time or theirs by applying for it again.

Several times over the last years, I tried getting doctors to listen. I went through the whole rigmarole time and time again, the CT Scans, MRI’s (and may I add that I suffer from claustrophobia) and each time I get the same results. “Your Shunt should be working, we don’t know why you still have symptoms´, sorry that we cannot help you any further”. Each time I get more and more discouraged. Each time I doubt my own sanity a little more. When people keep telling you that what you know to be true is not, what are you supposed to think?



My family and friends suffered greatly due to my being ill. Most friends turned their back and to be honest, I do not blame them. As a result of long-term chronic illness I started to suffer from depression as well and I can be a right B**** at times. On top of everything else, I also do not respond to any mood enhancing meds at all apart from in a rather negative way.



I try to pretend I am not ill these days.

I avoid doctors like the plague although my husband more or less forces me to go.

I will make another attempt of getting help this year, at yet another hospital but I would rather suffer in silence than to have one more ignorant doctor tell me that they cannot help me, that they do not know what is wrong, or that there is nothing more they can do...



I am just so tired...

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Kimmie B - posted on 07/28/2014

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I agree. My moods my life I was turned down by every dr. And why ? I question myself every day. ( do I wsnt to live this way , and can my family take the every day swings?)
I assume you yell when its not necessary? Grab ur head and mentally think just take me know.... it is hard not being around people like me and no one understands my pain i have even thoughy of putting myself in a institution for my mental confusion am I going crazy. I wake up and im nauseous throwing upI can't sleep I can hardly eat I can't even think straight. And I have tried everything I could with pills l/p and meditation. NOTHING WORKS. if any help please send it my way. Mom of 2 an married for 10 years. I want myself back.....:0 (

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