LilBoo007 491 Posted May 30, 2013 I have had this condition for almost 4 years now. Weightloss is supposed to improve or eliminate it. So far nothing : ( wondering if anyone else on this forum has it or had it and if loosing a lot of weight helped and when did you start seeing a change? I have lost 40lbs. Have 40-50 left to reach goal. Share this post Link to post Share on other sites
annav562 40 Posted May 30, 2013 Please explain what that is. .. Share this post Link to post Share on other sites
JPrez10706 17 Posted May 30, 2013 Yes! I'm now 32 and was diagnosed when I was 16. Before that I was misdiagnosed for a few years. I had my surgery in October and am down 97lbs and I have noticed a huge difference. I've only had one headache with the numbness and tingling. And at the time I was sleep deprived due to my work schedule. Share this post Link to post Share on other sites
JPrez10706 17 Posted May 30, 2013 Prior to surgery I had headaches and the other symptoms constantly. I don't need any meds now. I noticed a difference in the first couple months. I'm hoping it's a success for you! 1 MissNikki27 reacted to this Share this post Link to post Share on other sites
LilBoo007 491 Posted May 30, 2013 Jprez, my sister has it too but they weren't sure if its hereditary or not because my sister weighs close to 500lbs. I seem to have a more severe case than she does! My Neuro was hoping that if I lost enough weight it would go away. I'm 2 1/2 months post op and was doing better until about 3 weeks ago. For the last 3 weeks my symptoms have returned full force. Before surgery I was on 2000mg Diamox and 20mg Lasix. Since then I now take 500mg Diamox and my surgeon wants me off my meds completely, but at this point there's no way in hell I can come off my meds! I have literally had severe Migraines every day usually from the minute I wake up until I go to bed!!!! I'm hoping it will go away soon, mine can come in "cycles" but I think it may be time to call my Neuro and eye Dr. and get some tests done. I'm really hoping with further weightloss it will go away! It's a real hard condition to live with and when it's bad.,,,, it's horrible ! Share this post Link to post Share on other sites
JPrez10706 17 Posted May 30, 2013 That's terrible. No one else in my family has it. I wonder I'd you're on too much diuretic and maybe dehydration causing the headaches? Share this post Link to post Share on other sites
JPrez10706 17 Posted May 30, 2013 Never mind I just re read your post. Clearly diuretics aren't the issue. Start with your neurologist and eye doc. They know best regarding this Share this post Link to post Share on other sites
LilBoo007 491 Posted May 30, 2013 You know I thought about dehydration and maybe this past sat and sun I only got about 30oz in both days but I average about 50oz or more a day so I don't think it's that! Maybe my body just needs more time and more weight loss before I see real results( crossing fingers) Lol ! Share this post Link to post Share on other sites
LilBoo007 491 Posted May 30, 2013 @Anna... It's really a long thing to try to explain and still a lot of times people who don't have it or know someone who does have it might not really understand. If you google it or even Idiopathic intracranial hypertension( new name for it) it will go into great detail about this condition. Thanks for asking ; ) Share this post Link to post Share on other sites
SoccerMomma73 1,867 Posted May 30, 2013 I do not buy have several patients with it. Almost all that have lost a significant amount of weight have had greatly improved symptoms or complete resolution of symptoms. It's pretty amazing. Share this post Link to post Share on other sites
MrsLulu 69 Posted May 30, 2013 My sister suffers with it greatly to the point of debilitation. She has since she was 22. She is not even very heavy. She will be happy to know that there are others out there that do too. She is too scared to do the shunt. Share this post Link to post Share on other sites
LilBoo007 491 Posted May 31, 2013 Lulu... Unfortunately I am suffer pretty bad with it !n I was about 85 lbs o extra weight... While my sister has it too but only a mold case and she weighs almost 500lbs. So you would think It would be just the opposite! I'm still waiting to hear back from my Neuro to see what he thinks we should do. I don't want a shunt or sheath either!! I think the optic nerve sheath scared me met than the shunt! I actually watched a video of the sheath and was like "oh HELL NO"!!!! Share this post Link to post Share on other sites
nhnurse1 108 Posted May 31, 2013 I was diagnosed with it in 2001. I have had occurrences of it on and off since then. I lost 80 lbs after first being diagnosed and it was a HUGE help. I gained it back and the PTC came back with a vengeance. I have lost almost 70lbs including my pre-op weight loss and I have noticed a big difference. Share this post Link to post Share on other sites
LilBoo007 491 Posted May 31, 2013 I'm only 40lbs. Down... Hoping when I reach my fol which is another 45-50lbs. I will be symptom free!!! Share this post Link to post Share on other sites
LilBoo007 491 Posted June 5, 2013 So tomorrow I have to get another spinal tap to see what my opening pressure is..... Not looking forward to that since I always get a week long Migraine from the spinal tap, uggghhhh!!!!! Share this post Link to post Share on other sites
