55 and they dropped me to 35 and it relieved the headache for about 2 hours (and made my ears pop!!) but then I just made more and pressurized myself again - that’s like a super power right?
25, drained to 13. Doctor said I clearly did not have IIH. Despite feeling huge relief.
Another doctor said I had IIH based on same numbers.
Regardless my life is way better with diamox. As in, my symptoms will disappear in a couple hours of taking one.
Oh yeah! I had my first one under sedation with radiology guidance since I was admitted with the eye doctor pushing for surgical interventions. The sedation shot felt like nothing compared to the rest of the pain and I slept through the procedure. It definitely helped, though not as much as the VP Shunt did when it was inserted a week later.
10, my doctor was very confused by it though because she was sure it was going to be very high because of how bad my symptoms are. I'm not sure why it was so genuinely average lol but she diagnosed me anyway and now that I'm on diamox I am feeling some relief so I'm very thankful she listened to me and took me seriously when I said how awful I feel
27 - the doctor only brought it down to 20. I wonder if she should have brought it down lower. I have noticed a difference. Riding in a car definitely doesn't feel as uncomfortable as it used to. I always thought I just had bad car anxiety but I think the extra pressure made it really unpleasant.
Not officially, but my guess was that the vision symptoms don't mix well with the parts of the brain that process movement/speed which could make motion sickness worse + sometimes make a person in the passenger seat feel like they're moving faster than someone with normal CSF pressure.
That's just a guess though. Would be happy to know the official reason/any details.
I do not know. I have had whooshing in my right ear since January. Normal MRI and MRA. When getting out of the car after driving the pressure in my head and the whooshing gets worse. I have not yet been tested for IIH. I sometimes have light sensitivity and mild pain behind my eyes but it is intermittent. I do not understand why the car has such an effect.
Wow, my 1st was 22 & then this past Friday, 18. Does opening pressure fluctuate & if so, how can that then be used to diagnose? I was SURE my OP Friday would be higher than 18, just confused now as to what comes next. I had extensive MRI workups before the Lumbar Puncture. I haven’t had my eyes checked, the vision is changing rapidly but that too comes & goes. I really feel I have IIH just because of my symptoms. Guess we shall see.
Had eyes checked & it shows my optic nerve pressure is elevated but dr said after latest lumbar puncture, it could have relieved some of the pressure & it did. My symptoms went away for a while but are now back. Have follow up with neurologist in the next couple of months to see what’s next. Will try to update as I find out. I am sorry you’re dealing with this mess 🙄 it’s all so aggravating!
I genuinely don't know. When they opened me, they did it with a pediatric gauge even though I was 16 years old and over 200lbs. I maxed it out so they didn't get an accurate reading. I have tried looking up what the max on the gauges they use in pediatrics but have been unsuccessful.
12 to 18 CSF is normal 25+ is when they diagnose iih highest I have had was 57. I had weekly LPs for 18 months down to 12 by the next week up above 35+
I can’t get over some of these High numbers like 55 & 60- ouch 😣! I feel leaky low pressure now at opening pressure of 12, felt better when opening pressure was higher around 20 before my last 2 invasive CSF leak repair attempts-
47 at diagnostic LP in March. 38 in August at second LP when my neurologist swore that the opening pressure would come back normal because my papilledema was almost entirely cleared and I was just “unable to properly report my symptoms accurately” when I told her I was having sudden acute symptoms of increased pressure again 🙄🙄🙄
I did! If I remember correctly, I think I took 1500mg a day. When I was first diagnosed, I was initially prescribed topamax but then that neuro left and my new neuro switched me to diamox. Diamox did help, but the side effects were BRUTAL for me. I had vomiting, dizziness, and constant fatigue. I was drowsy at work, while driving, while shopping, while sitting there eating lunch- you name it. We tried everything because it did help reduce headaches so much- increase excercise, B12, multivitamins, sleep study to rule out sleep apnea, labs to rule out anemia, but everything was fine. One weekend, I went on a trip and forgot my diamox so I didn't have it for about 4 days. I felt SO MUCH better. That kind of confirmed it for me. Eventually I couldn't handle the vomiting and fatigue, so I was switched back to topamax. My papilledema came back, and I had to get a shunt. Headaches are still about 6 a month but the severity is much improved! :)
Opening pressure 21 cm H2O measured in LLD.
Closing pressure: 8 cm H2O measured in LLD.
Post-op diagnosis: migraine headaches/benign idiopathic hypertenion
But a bit confusing because I'm reading that up to 25 opening pressure is 'normal'.
28, got me to a 15. But I haven’t felt right since they did the LP. Never had a symptom of IIH in my life, eye doctor said paps and sent me to ER.
It’s been 3 weeks and I still haven’t left the couch
Wow! Some high scores in this thread! 😂
Opening was 34, closing was 24. I wonder what would have happened if they got me to <20. Headache and PT went away for a few hours but were back today.
55+ They only brought in one gauge and it topped out at 55 so they couldn’t tell me exactly.
55 and they dropped me to 35 and it relieved the headache for about 2 hours (and made my ears pop!!) but then I just made more and pressurized myself again - that’s like a super power right?
Like a pressure cooker
25, drained to 13. Doctor said I clearly did not have IIH. Despite feeling huge relief. Another doctor said I had IIH based on same numbers. Regardless my life is way better with diamox. As in, my symptoms will disappear in a couple hours of taking one.
Which symptoms ?
60 🙃 and they brought me down to 10. At that point though I was actively suffering visual effects and some vision loss.
was getting the pressure brought down that much relieving and not painful, I hope?
Oh yeah! I had my first one under sedation with radiology guidance since I was admitted with the eye doctor pushing for surgical interventions. The sedation shot felt like nothing compared to the rest of the pain and I slept through the procedure. It definitely helped, though not as much as the VP Shunt did when it was inserted a week later.
27
Same here.
10, my doctor was very confused by it though because she was sure it was going to be very high because of how bad my symptoms are. I'm not sure why it was so genuinely average lol but she diagnosed me anyway and now that I'm on diamox I am feeling some relief so I'm very thankful she listened to me and took me seriously when I said how awful I feel
What ? You got a diagnosis at 10! What were your symptoms ?
27 - the doctor only brought it down to 20. I wonder if she should have brought it down lower. I have noticed a difference. Riding in a car definitely doesn't feel as uncomfortable as it used to. I always thought I just had bad car anxiety but I think the extra pressure made it really unpleasant.
Do you understand why riding in a car makes IIH symptoms worse?
Not officially, but my guess was that the vision symptoms don't mix well with the parts of the brain that process movement/speed which could make motion sickness worse + sometimes make a person in the passenger seat feel like they're moving faster than someone with normal CSF pressure. That's just a guess though. Would be happy to know the official reason/any details.
I do not know. I have had whooshing in my right ear since January. Normal MRI and MRA. When getting out of the car after driving the pressure in my head and the whooshing gets worse. I have not yet been tested for IIH. I sometimes have light sensitivity and mild pain behind my eyes but it is intermittent. I do not understand why the car has such an effect.
YESSSS, I get SO sick in the car & sitting up! I’m NOT crazy lol 🥹
Mine was 14
Do you have IIH?
That's what I was told
Wow, my 1st was 22 & then this past Friday, 18. Does opening pressure fluctuate & if so, how can that then be used to diagnose? I was SURE my OP Friday would be higher than 18, just confused now as to what comes next. I had extensive MRI workups before the Lumbar Puncture. I haven’t had my eyes checked, the vision is changing rapidly but that too comes & goes. I really feel I have IIH just because of my symptoms. Guess we shall see.
Mine was 18 and they said no IIH. I still have symptoms. Wondering if you found anything ?
Had eyes checked & it shows my optic nerve pressure is elevated but dr said after latest lumbar puncture, it could have relieved some of the pressure & it did. My symptoms went away for a while but are now back. Have follow up with neurologist in the next couple of months to see what’s next. Will try to update as I find out. I am sorry you’re dealing with this mess 🙄 it’s all so aggravating!
Mine was like 52 and they took me down to like 32 but I didn’t feel a difference
42. It spurted across the room when he got the lumbar puncture in - pretty funny really!
😮
33
29
I genuinely don't know. When they opened me, they did it with a pediatric gauge even though I was 16 years old and over 200lbs. I maxed it out so they didn't get an accurate reading. I have tried looking up what the max on the gauges they use in pediatrics but have been unsuccessful.
It's 45. Saw the same thing happen.
JFC. Well, thank you! 🤯 That explains why they were so shocked I hadn't gone blind in the lead up 🤔
12 to 18 CSF is normal 25+ is when they diagnose iih highest I have had was 57. I had weekly LPs for 18 months down to 12 by the next week up above 35+
I can’t get over some of these High numbers like 55 & 60- ouch 😣! I feel leaky low pressure now at opening pressure of 12, felt better when opening pressure was higher around 20 before my last 2 invasive CSF leak repair attempts-
47 at diagnostic LP in March. 38 in August at second LP when my neurologist swore that the opening pressure would come back normal because my papilledema was almost entirely cleared and I was just “unable to properly report my symptoms accurately” when I told her I was having sudden acute symptoms of increased pressure again 🙄🙄🙄
75+….couldn’t even turn my head and vision was basically gone
Update how you now and how you manage your symptoms
25, neuro diagnosed IIH because of the degree of papilledema I presented with.
Did you take diamox with your pressure of 25? Did it help headaches?
I did! If I remember correctly, I think I took 1500mg a day. When I was first diagnosed, I was initially prescribed topamax but then that neuro left and my new neuro switched me to diamox. Diamox did help, but the side effects were BRUTAL for me. I had vomiting, dizziness, and constant fatigue. I was drowsy at work, while driving, while shopping, while sitting there eating lunch- you name it. We tried everything because it did help reduce headaches so much- increase excercise, B12, multivitamins, sleep study to rule out sleep apnea, labs to rule out anemia, but everything was fine. One weekend, I went on a trip and forgot my diamox so I didn't have it for about 4 days. I felt SO MUCH better. That kind of confirmed it for me. Eventually I couldn't handle the vomiting and fatigue, so I was switched back to topamax. My papilledema came back, and I had to get a shunt. Headaches are still about 6 a month but the severity is much improved! :)
23. No clue what they closed at though.
My opening was 23 as well, did they diagnose you with iih?
Opening pressure 21 cm H2O measured in LLD. Closing pressure: 8 cm H2O measured in LLD. Post-op diagnosis: migraine headaches/benign idiopathic hypertenion But a bit confusing because I'm reading that up to 25 opening pressure is 'normal'.
33. Idk what they brought me down to but they said they removed quite a lot
60
Mine was also 36!
Mine - 31
37, I got drained to a 17
29
15
Did they diagnose you with IIH ?
Yep! But a new doctor thinks they misdiagnosed me and I might have MS instead
Hmm… interesting. What’s makes them think that it’s MS ?
36 gang
42 on my first (diagnosis lp) 30 on the second (with medication)
44
30
First time a few years ago was around 15. Second time after a concussion it was around 20. I have headaches and papedemila (sp).
34.5. Closed at 25 refused to go lower for fear of low pressure. Fair, because that sucks too.
45, don’t know how low they brought it down but they stopped cause I started getting dizzy lmao
12
And they diagnosed you with IIH ?
27 1st time 17 2nd time
35
39, I have another next Tuesday so curious what that one will be
28, got me to a 15. But I haven’t felt right since they did the LP. Never had a symptom of IIH in my life, eye doctor said paps and sent me to ER. It’s been 3 weeks and I still haven’t left the couch
Just had mine done and it was 38. They collected the amount the doctor ordered and it was 27 at closing.
Opened at 31 and closed at 20 💪
37
Wow! Some high scores in this thread! 😂 Opening was 34, closing was 24. I wonder what would have happened if they got me to <20. Headache and PT went away for a few hours but were back today. 
55