Hey there! I'm currently dealing with the same problem. I was first diagnosed 8 months ago. I had an LP and was put on Diamox. I hated the medication i couldnt stand the side effects. I felt incredibly tired and lathargic constantly and found it very hard to look afer my 2 kids whilst on diamox. I also started to feel myself slip into depression. So after about 2 months on it i took myself off it and signed up to a gym, which helped me lose 10kg but then got sick because of low iron and low B12 and since then the headaches and the pressure in my head has gotten worse. So I've just recently started taking the medication again. Exercise is too hard whilst on the diamox, I struggle to be a mother let alone slug it out at the gym.

Hello!
I was wondering why you can't take the medications many of us take? Diamox isn't the only one, it's just (I think!) the most popular.
-Diamox
-Topamax
-Lasix

I do not have a band or know anyone with ptc so far that has told me they've had the gastric bypass surgery, though many of us, I'm sure, have been told to get it.
Hope something I've mentioned helps somehow!

Hi Lillith!!

OK - a bit of a rant here. When the surgeon suggested fitting a gastric band instead of putting in a shunt, which WILL help the problem in most cases, you need to read between the lines a bit here. As I see it, when he said the procedure is "technically difficult", I read that as he's LAZY. Yes, a shunt procedure should take approximately 1.5 hours to complete. I was the same size as you when my NS placed my LP shunt. It took 3 hours due to my size. I had NO additional problems with infection - that's just hooey. Larger people don't have any greater risk of infection due to their size that I'm aware of.

If it were me, I'd find another surgeon...

Also, please be aware that if you are on medication you will have to crush the medication before being able to take it after the band. Also, you can't usually take ER tabs (extended release) because you can't crush those. When I was originally diagnosed I had not met the BMI for banding or bypass at that point but with the PTC, I qualified. My surgeon who I met with recommended that I do NOT do the banding just for the complications because of medications alone.

Well my main issue with this is why is he wanting you to do the lapband? Is it so you can lose weight then him do the shunt or dose he believe that the lapband will make you lose weight to the point that your IH will go away with that?

because i've lost 35 pounds since being DX with IH and i still have it ( i was 5'3" and 220) I can take the meds.

Now the same month i was DX i know a girl that got lapband... she rushed though the program to get it and now here we are two years later i lost 35 that i've kept off and she lost 16 pounds. yep thats right just 16 pounds.

So i really would want to know what he hopes to come by with not doing a shunt and you having a lapband instead. What if you don't take well to the lapband, or what if you get it done and still then after that need a shunt.

To me it just sounds like this doctor thinks that because your overweight it's why you have IIH and if you lose weight you will be fine but it doesn't work like that for everyone you might be a lucky one and it works like that but you might not be.

I'm allergic to Diamox, intolerant to Furosemide (also didn't work on the pressure), suffered anxiety attacks on Topamax, and Amitryptaline didn't work.

Surgeon is concerned thy because my headaches got worse with LPs and didnt get relieved, that a shut might cause me more problems and that I might end up with an intractable headache (like I have just now). He and my Neurologist think that because i've had such a bad reaction to everything else, that a shunt might cause more problems and not give me any relief. Surgeon honestly said he doesnt believe I have IIH just because I'm fat, but has seen a few cases of it going in to remission with significant weight loss ( which i'm unable to achieve alone through exercise atm). I don't think my surgeon would say no to the LP shunt, he's just putting both ideas on the table.

I've lost about 15-20 pounds since dx and no remission. That's how much my Neuro suggested but he never thought IIH was really weight driven, he's convinced it's hormones. I think so too. But maybe to cover all your bases here, you should look into perhaps getting a second opinion?

I cannot tell you how glad I am that I got a second on my neurosurgeon. The first time he met me, he suggested I lose about 100 pounds (because he's magical and can figure out how much I weigh from the hospital bed) and that my best bet would be gastric bypass and then if that didn't show significant results, after about a year then I should be shunted.
Some doctors get focused on weight as an issue to tackle when they hear that it MIGHT be a reliever.

Hmmmm... I view these articles with suspicion. Their sample sizes are so small (1, 8...) that they are anecdotal, not scientific IMHO. The exception to that is the last article which studied approx 60 patients. Also, a doctor is probably only going to write a case study (one patient) on IH and gastric surgery if the gastric surgery worked. Not if it didn't. Here's some info:

Gastric surgery for pseudotumor cerebri associated with severe obesity
http://www.ncbi.nlm.nih.gov/pubmed/10235521

Increased intra-abdominal pressure and cardiac filling pressures in obesity-associated pseudotumor cerebri
http://www.ncbi.nlm.nih.gov/pubmed/9270586

Effects of surgically induced weight loss on idiopathic intracranial hypertension in morbid obesity.
http://www.ncbi.nlm.nih.gov/pubmed/7675222

The effects of laparoscopic adjustable gastric banding on idiopathic intracranial hypertension.
http://www.ncbi.nlm.nih.gov/pubmed/21088927

Bariatric surgery for the treatment of idiopathic intracranial hypertension.
http://www.ncbi.nlm.nih.gov/pubmed/20095788

I have a family member who had gastric surgery and she had severe side effects - her electrolyte balance was thrown way off and she had a heart attack. She also gained back all the weight. So I guess I'm prejudice on the subject.

Most reuputable gastric surgeons will require you to lose at least 10-20% of your body weight before they will do the surgery. This is to make sure you can do the required lifestyle change, and to make sure you really want and are committed to the surgery. Since that's the target amount for us anyway, why have the surgery? Why not just lose the weight? I mean, if you can do 20% on your own, why not 30, 40% or more???

Well with them saying they don't believe it's just because your fat, and they seen a few cases... i would go get a 2nd opinion maybe even a 3rd if they tell you very different things.

As with a shunt i don't know how much time they think you have before you need one. Things can go down hill pretty fast with our eyes. it's not really something i would put off and hope a year under high pressure they would be okay. so in that point i would also talk to my optho about my eyes (paps or not we can go blind) about there plan pretty much to not treat the IIH for a year.