Howdy Hydrocephalus

Understanding my unique gyroscope

The fine line


Hydrocephalus is a weird beast. It is manageable condition that exists but when there is a problem, the symptoms can be quick and life threatening or come on slowly and progressivley and be often over looked. The second one is what happend to me the first time with me. When all this crap started I thought I knew my body, it was a fine machine, it was in shape and it worked wonders, except for my faulty eye sight. I went to the doctor’s over and & over and was convinced it was in my head, that I was just over reacting, that I didn’t know what I was talking about when I brought my symptom book and my possible questions from searches. I was made to think that I was having a midlife crisis and that I was was crazy. I was made to doubt myself and my body. Why would I be in a midlife crisis, other than being extremely frustrated by not being listened to or being taken seriously, made fun of by the medical doctors &U nurses at the hospital. I was in an awesome place in my life! Now that I have am learning a semi new me. I am still learning my body. Still adapting to my meds and my reactions to meds and to situations and I am still not to sure what really is up.

But about four weeks ago, the headsaches got a little worse. I was put on a medicine for that usually treats high blood pressure but can treat migraines as well. I had concerns because my blood pressure usually runs at 110/67. I started seeing red spots and when I walked to the living room I would feel faint and the headaches were still there. I wanted to go back to the doctor but held off because I had an appt. with brain doc. When I spoke with brain doc we switched meds on me – yay – agreed that the meds were lowering my blood pressure too low. She was also concerned that the headaches and my increased right sided tingling were not just brain injury related. She asked me questions about my headaches – if I bent down or strained where the headaches worse – yes. If I was lying down – ??? couldn’t answer that one but I monitored for a week and yes. She said she would set up a scan in my home community.

I went back and found one of my old symptom books. May 2012 – all the symptoms the same – crap! I didn’t clue. I relooked up all the hydrocephalus symptoms again because I forget (brain injury memory crap) and yes I am experiencing potential symptoms again.

I have waited a week for my new meds to kick in and today I am following up with her and my neurosurgeon at the hydrocephalus clinic to say that we do think something is wrong and it was not the meds. That we are willing to travel to get the scan done if it is quicker. Here we go on the Merry go round again. At least I know what to expect.


2 thoughts on “The fine line

  1. I follow every post through your journey hun. Pray they get it all sorted out for you ❤

  2. I apologize for not getting back quicker … damn I couldn’t remember where to find you until I finally realized to check back in my comment column! Sorry, but I’m sure you understand.

    How are you feeling? Did you need a shunt? I’m going to read more about what’s been going on, but it does sound like you’ve had increase in intercranial pressure. What did they find out? Of course I’m not a doctor, but I am here to listen and understand. No one gets brain injury until they get one!

    I certainly hope you are okay. Take care and stay safe, Edie

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