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...
Does anyone know about weight gain after PTC calms down?
I know that weight is something that doctors always point out with PTC and I am trying to lose some, but I gained weight AFTER my shunt was set the the perfect level. In May, my shunt was set to where it is now and since then, I have been gaining weight. I just want to know if anyone else has gained afterward or if I am a bit crazy!
Thanks!
Heather
I know that weight is something that doctors always point out with PTC and I am trying to lose some, but I gained weight AFTER my shunt was set the the perfect level. In May, my shunt was set to where it is now and since then, I have been gaining weight. I just want to know if anyone else has gained afterward or if I am a bit crazy!
Thanks!
Heather
I had an LP shunt put in 2 months ago, and again had so much pain and such a hard time healing that again I was not eating and I've lost 10 pounds. Unfortunately, just as my body is starting to feel better and I am getting some appetite back and wanting small meals, my shunt is failing and I am going back for surger this Tuesday :(
You are off medications now? I would guess maybe it just feeling better in general :) if it is more than seems normal ask your doctor. Or if you feel bloated or swollen. I noticed when my pressure is going up my rings also get tighter and I wake with puffy eyes, etc.
I was so glad to hear that after everything you have been through, you seem to be stabilized and have started living again. Gives the rest of us some hope :)
Amy
Yes, I am off of all medications except my anti-seizure medication and a betablocker I take (my heart beats twice what it should...not a fun feeling!!) I was on pain medicine, anxiety medicine, sleeping medicine and a muscle relaxer (I have another issue that the muscle relaxer was for!) so I am just so glad. They really messed with my memory...I see that now. :(
I am not extremely overweight or anything, I am just not where I want or need to be...so I am going to be starting Weight Watchers soon. My primary doctor and neurologist both said they think that would be the best one for me. Plus they have that mobile app and it will be easier that way!
I am so sorry you have to have surgery again. It is not fun at all! I had four surgeries in two years (December 2010, July 2011, September 2011 and February 2012) and MANY LP's done in between...so I definitely understand how frustrating and tiring it can be. I am just praying that I am over the worst and that this keeps working for me.
Keep having hope. It can get better...I got to the point of thinking it would never get better, but it did! And for all of you, I truly believe it can. I have to believe that!
Hugs to you!
I did read your first long post about the seizures and your leg freezing up, etc. that is really crazy, and would have been extremely scary! I was terrified when things started going wrong with me last summer. I also had the feeling that my eyes were going to cave in or pop out! I even started slurring. And sometimes was. It able to wake myself up.
I am like you, not very overweight but still need to lose some. When one of the neuro residents first came to check on me post-op, she said OH! You don't really fit the typical profile of someone with pseudomtumor! I wish doctors would get over that. I think that is probably why I had so much trouble with my first doctor and not getting a proper diagnosis until I went someplace else. He kept saying I was having migraines and kept upping my Topomax and I kept landing in the ER and continued to degrade. Ass.
I am glad your shunt is finally the right one and is working. You seem to have a very positive outlook, and your are young, and those things will only help you overcome this!
Keep up what you are doing!
And isn't that little Sammy just too adorable! My guy is related to Pom's but he is is 16 pounds. Now I want another little one :)
Amy
Yes Sammy is too cute!! I am going to make a point to check him out every day now! :)
I think that may have been a part of why my first neurologist did not do anything except laugh it off when I specifically said I felt pressure behind my eyes...like they were being squished! We were traveling to Nashville (we do every summer for country music festival) and my mom told him that and his response was, "Vanderbilt is close." OMG I wanted to kick him in the face!!! How wrong is that...you're going on vacation, but do not worry...there are hospitals there! Ugh!
I cannot tell you how many times I was in the ER! Especially the first year. I think they thought I was going for drugs but I was not! I have never been happier than being able to be OFF of every one of them. My neurologist did not even expect me to! The last medicine I was on was Tramadol, which we all know is pretty weak in strength, and that caused more seizures so now, whenever I have a seizure, my leg shoulder comes out of joint and that is so unbelievably painful! It will be out of joint for weeks afterward! No thank you!
And me too, I am glad my shunt is working! It was not an immediate fix like I have seen a lot of people thinking they may be...I thought so, too! I thought after my first brain surgery, woo I'm fixed! Seven months later, another brain surgery...was vomitting for a year straight and seven months after my second brain surgery, they went into my chest! It takes time...but the end result will be worth it! This is a better me than I was before PTC!