Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
Hi everyone, I know its been a while, but I wanted to update you on my progress.
i finally just weaned off my meds in the first part of August. 1. because I no longer had spots in my vision and 2. the meds side effects were worse than the disease itself.
I had tried to lose the weight but only lost 20 lbs. I had gone off caffeine, aspartame and really any artificial sweetener. I continued to have headaches on or off these things.
So I caved and started drinking pop again (Coke a Cola or soda to others) The headaches continued. Then I met a wonderful woman at a garage sale that I had at my home. (we just moved and had a move in sale) She has chronic health issues and recommended the gluten free diet. (which Sophiasmom06 also wanted me to do) Finally with 2 people telling me to look into I decided to do just that.
So early this week I started on 6000mg of fish oil and started taking my vitamin D too (8000mg per day) I started researching gluten free items. I tried the Enjoy Life double chocolate cookies and Amy's gluten free pizza. Surprised both are quite good. I also found Pamela's pancakes, bread mixes and scones....all of good quality.
I am also making a quick bread recipe and just so you know I add 2 TBS of cinnamon apple sauces and 1 tsp of real sugar to the recipe to make it a little more bearable. http://www.food.com/recipe/one-minute-flax-muffin-low-carb-295649
The wonderful update is this is the very first morning in months that I have awoke to no pulsatile tinnitus, no dizzy spells getting out of bed and very little pain. I feel clear (not confused or hazy, no brain fog)
I don't want to give false hope. This is a terrible disease, but I can't not share what is going on in case this could help even one person.
Be blessed everyone.....Aim
i finally just weaned off my meds in the first part of August. 1. because I no longer had spots in my vision and 2. the meds side effects were worse than the disease itself.
I had tried to lose the weight but only lost 20 lbs. I had gone off caffeine, aspartame and really any artificial sweetener. I continued to have headaches on or off these things.
So I caved and started drinking pop again (Coke a Cola or soda to others) The headaches continued. Then I met a wonderful woman at a garage sale that I had at my home. (we just moved and had a move in sale) She has chronic health issues and recommended the gluten free diet. (which Sophiasmom06 also wanted me to do) Finally with 2 people telling me to look into I decided to do just that.
So early this week I started on 6000mg of fish oil and started taking my vitamin D too (8000mg per day) I started researching gluten free items. I tried the Enjoy Life double chocolate cookies and Amy's gluten free pizza. Surprised both are quite good. I also found Pamela's pancakes, bread mixes and scones....all of good quality.
I am also making a quick bread recipe and just so you know I add 2 TBS of cinnamon apple sauces and 1 tsp of real sugar to the recipe to make it a little more bearable. http://www.food.com/recipe/one-minute-flax-muffin-low-carb-295649
The wonderful update is this is the very first morning in months that I have awoke to no pulsatile tinnitus, no dizzy spells getting out of bed and very little pain. I feel clear (not confused or hazy, no brain fog)
I don't want to give false hope. This is a terrible disease, but I can't not share what is going on in case this could help even one person.
Be blessed everyone.....Aim
your doses of fish oil and vitamin D are twice what I would recommend, though. you don't want to overdo vitamin D with IIH.
Not everything is perfect but I am trying to get there....eating fresh fruits and veggies....less meat and no wheat flour.
i have had so much success with a GF free diet myself and i found that if i did a home cooked GF diet the weight just fell off me. (I have now found some very lovely GF cream sponge cakes and ginger biscuits at my local supermarket so my good behaviour is under threat but boy are they yummy and i can eat them without any symptoms - but i will have to watch the calories!!!)
so glad you are feeling better and were able to come off the tablets too, (i have been off my tablets for a month now and loving not feeling so sick all the time and having my life ruled by whether or not i have taken my pills) i hope you continue to go from strength to strength :)