Gabriel's Life » Living with Hydrocepahlus - Adults

34 year-old diagnosed with congenital hydro at age 17


(5 posts)

  1. Parisgirl
    Member

    I am currently looking for answers/assistance/hope for dealing with my continuing headaches. I have dealt with headaches since I was 5. I was initially diagnosed with congenital hydrocephalus at age 17 and shunted with a PS Medical VP shunt. It is hard to say if my headaches increased or not with the shunting, but I know they did not get any better. I am now 34 years old and have had one revision due to overdrainage.

    I continue to have pounding sensations that start in my temple areas and sometimes move to the top of my head. This occurs after any slight activity (including moving from sitting to standing, and climbing up stairs). I have always viewed this as a "headache" but I am now wondering if it isn't something else. I cannot play sports and never have been able to. It is almost like when my heart gets pumping, my blood vessels cannot handle the pressure.

    I was a medical transcriptionist for 9 years, so my headaches were pretty manageable due to the lack of physical activity. Now I am working as a coffee shop barista while finishing my bachelor's degree and the physical demands of the job are taking a toll on me and my body. Almost every time I am done with work I have a pounding headache. Last night it was so bad again that I decided to seek out some answers this morning.

    Does anyone have similar "headaches"? If so, how do you treat them? I am especially interested in connecting with other young adults who were shunted in their late teens/early 20's. Thanks so much.

    Posted 8 months ago #

  2. mp327
    Member

    Parisgirl--

    I am sitting here in disbelief, as there are several similarities in our stories. First off, I was diagnosed with decompensating congenital hydro at age 39 and got a VP shunt. I am now 55 and have the same original shunt. Secondly, I worked for several years as a medical transcriptionist! Thirdly, I too, have experienced occasional headaches, such as the ones you describe. I am an avid exerciser and have found that sometimes, but not all the time, exercise can bring on throbbing-type headaches. Certain movements can trigger headache pain (I know this sounds strange, but for example, shaking rugs).

    A couple of things come to my mind when reading your story. 1) Do you have high blood pressure? 2) Do you drink caffeine? As I'm not a doctor, I'm not sure the first question is relevant to your situation, but it would make sense that if you do have HBP, this could possibly cause headaches. As for the caffeine question (and you DO work in a coffee shop!), I have found that I must avoid caffeine. I drank coffee for years before I was dx'd with the hydro and had frequent headaches. I continued to drink it after my surgery and still had them, so I switched to decaf, which was much better. A few months ago, I mistakenly bought a bag of regular coffee, not decaf--whoa! The 2 a.m. headaches that woke me up every night were intolerable. I have now quit drinking cofee on a daily basis and have switched to tea--not decaf, but it doesn't seem to have the same headache-producing effects on me. These are just 2 things you may want to consider, but your doctor would know best. All I know is that the caffeine-induced headaches were the worst for me.

    I applaud you for working hard and putting yourself through school. I'm glad you are not letting your hydrocephalus keep you from pursuing your dreams. I wish you the best in your endeavors and would be most happy to hear from you again on this forum anytime as regards your headaches. I hope you get them resolved.

    Martha

    Posted 8 months ago #

  3. PMBlind
    Member

    I was originally diagnosed with Congential Toxoplasmosis. I was Diagnosed in 1993 at age 19 for the Hydrocephalus.

    I was attending a school for the Blind in the San Francisco/Oakland area when diagnosed in March 1993. However, The problems started back in November 1992, when I started having flareups of the Toxoplasmosis causing my eye pressure to go up.

    On the day I was diagnosed, I went into see my Opthomologist about my eye pressure. It was measured at 35 in both eyes. My eye doctor had to do this test twice with observation from another eye doctor to make sure his reading was correct. Later that afternoon, I had a Spinal Tap done. Then I was told about the Hydrocephalus.

    Of course being 19, I was scared. I had to call my parents who lived in Southern CA at the time. On March 31, I was admitted into the Oak Knoll Naval Hospital to have surgery on April 1 on my right eye. Then again on April 9 to have the left eye done. The eye doctor had done optic nerve sheeth decompressions on both eye to try and relieve the pressure build up.

    In late August 1993, I had the VP shunt placed. This surgery was done at Balboa Naval Hospital in San Diego. I was shunted after my 20th birthday.

    My first shunt revision was done in December 2003. This was due to a rupture along the neck area. I believe this was caused due to an injury while at work after I accidentally crashed a bookcase into a pole in ths stockroom as well as taking a blow to the neck area where the tubing is.

    I was hospitalized on Dec 20 and released on Dec 22 and was out of work for six weeks. My last check through an MRI was done in 2007.

    Philip W. Myers

    Posted 8 months ago #

  4. Parisgirl
    Member

    Martha & Philip,

    Thank you so much for your replies. First of all, I am sorry I haven't been on this site in a while to resopond to your responses! Life has been busy.

    Martha, our similar stories are sort of weird, but interesting! Thank you so much for your kind words regarding my working hard to put myself through school. There are many times where I get extremely frustrated when I am at work, struggling through yet another headache. That is when the "life isn't fair...feel sorry for me" syndrome can start creeping in.

    Anyway, Martha, to answer your questions:
    1. I do not have high blood pressure. In fact, my blood pressure has always been very LOW.
    2. I do not drink caffeine, as I can't, because--guess what--it gives me headaches. I do, however, still eat CHOCOLATE. I cannot seem to give that up. I have only once so far noticed a strong connection between eating chocolate and getting a headache, however.
    3. You are so lucky that you are able to exercise without getting many headaches. I find it interesting though that a small activity (like shaking rugs!) can trigger headache pain for you. Small activities triggering headache pain is definitely something I relate to.

    Philip, I'm sorry that you have more medical issues to deal with than just the hydrocephalus. Hydrocephalus by itself can be overwhelming; I cannot even begin to imagine the struggles you have had with your eyesight in addition to the hydrocephalus. However, it sounds from your post that you are doing well and are able to work?

    Now some questions for you, Philip:
    1. I assume your hydrocephalus was caused by the toxoplasmosis? Did the toxoplasmosis or the hydrocephalus cause your eye problems?
    2. I read in an article at http://kidshealth.org/parent/infections/parasitic/toxoplasmosis.html#a_Congenital_Toxoplasmosis that "up to 90% of children born with congenital toxoplasmosis have no symptoms early in infancy, but a large percentage will show signs of infection months to years later." At what age were you diagnosed with the toxoplasmosis? I ask because I find it odd that you weren't diagnosed with hydrocephalus until you were 19 (I was 17).
    3. Lastly, you didn't mention if you struggle with headaches? If so, how often do you have them, what causes them, where is the pain located, and how do you find relief from them?

    Thanks again to both of you and best wishes for very healthy futures!

    Amy (a.k.a. Parisgirl)

    Posted 7 months ago #

  5. mp327
    Member

    Amy--

    I am sorry that you are still struggling with headaches and haven't been able to find the source. As for the feelings you sometimes have about this not being fair, you are not alone. I think anyone diagnosed with a disease such as hydro experiences this. I found out in June of 2008 that I had anal cancer--talk about something not being fair! I still wrestle with those feelings, even though I have completed my treatment and have a good prognosis. I think it's important to just take one day at a time, be thankful for everything good in your life, and realize that there are so many people who are worse off. You sound like a wonderful young woman, full of ambition and much to offer, so keep your sights sets on achieving your goals and you'll be fine! Take care.

    Martha

    Posted 7 months ago #

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