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May 27, 2010 in Uncategorized

Hi, Im Nala. I just started back on my PKU diet as of May 26, 2010. It is not very easy after being off of it for over five years. I seem to be having a hard time adapting or at least my system so far. Today one of my symptoms was a headache. The headache felt as if my head was about to explode. I had a hard time with the light or the brightness of it. I could not even touch my hair it hurt much less lay down without hurting my head. I would like to know did anybody else have these reactions. My formula is Phelexy-10 tablets. Did anyone else have headaches? I am going back on the diet because i want to be there for my children and because of the new research they have done which made me question my health.

6 Reviews of Nala

  1. Registered: Feb 1, 2010

    Posts: 0

    Tucson, Arizona

    Hi, Nala. My name is Kristi. I have always been on diet, so I have not had the struggle of going back on diet, but am glad that you have decided to do it. The headache you described actually is similar to headaches i get sometimes. A lot of times, my headaches happen when I have not had all of my formula (I’m on phlexy-10 tabs too) or if I have eaten too much phe. Also, my doctor has said that they sound like “tension headaches” and so encouraged me to reduce stress–I was in nursing school and now work in a stressful nursing job, so the headaches have continued.

    If you have not quite worked out the kinks of what your body needs phe-wise, formula-wise, and/or made sure that you’re getting enough vitmains/minerals, I am wondering if this might be a reason for your headache. Or, if your headache is stress-induced, are you maybe stressed about going back on the diet? Have you had headaches like this before?

    Good luck, and keep us all posted!

  2. Registered: Feb 26, 2007

    Posts: 0

    Chicago, Illinois

    Hi Nala,
    Nice to meet you. There are a number of adults on here who definitely understand the struggles of going back on diet. It’s challenging, but it helps to have support. And it does get easier as you continue to eat right and see the improvements in your life because of being on diet.

  3. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Hi Nala. First of all – go you for getting back on diet!!! You are probably experiencing headaches because your levels are already decreasing. I find if my levels drastically decrease in a short period of time, I get terrible headaches. I would still let your doctor know about the headaches. I used to take Phlexy 10 capsules, but did not experience headaches from them. If you have anymore questions, feel free to ask. Again, congrats on getting back to your diet. You will feel great in no time!

  4. Registered: Jun 3, 2010

    Posts: 0

    Heilbronn, INTERNATIONAL

    Hi Nala,

    I’m trying to keep the diet stricter again too, so you’re definitely in good company around here. :)

    I cannot imagine, why going back to diet should give you such headaches – I would check, whether the amount of protein you’re taking with the formula is enough, but beside that, I have no idea. Hope it gets better!

    Good luck!


  5. Registered: Oct 26, 2009

    Posts: 0

    , Missouri

    Thank you for your comment. What type of pku do have? How long have you been off your diet? Where so you live? How old are you? sorry im asking so many questions I am just curious. What type of formula are you on?
    Things are graduallly getting better but in due time. It is so nice to meet you. maybe we could be encouraging to each other. hope to here from you soon.


  6. Registered: Nov 3, 2009

    Posts: 0

    , Massachusetts

    Hi Nala!
    I am 24 and had about 5 years in college where I dealt with very high levels as well. I noticed I got headaches exactly like what you described both when my levels were going up very quickly or coming down very quickly. I have classical PKU, only ~10-12 exchanges a day or 150-180 mg/d so it is difficult to stick to. I take camino pro and better milk, I used to take the Phlexy-10 drink pouches. Once the headache breaks through I am willing to bet that you will feel a million times better… let me know if I am right : ) This is a great place for support, many of us have been there and even if not we can all appreciate the challenges of living with this diet day to day.

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