I have been suffering from IIH from Jan 2012. I had LP with 32 in Feb 2012. Right away started with diamox 1000mg till March 2012. Had pulsatile sound on and off in my right ear after taking diamox. Then my NO reduced the dosage to 750 mg till June 2012. Meanwhile lost 10 pounds and was doing very well. I weigh 138 pounds right now. NO reduced the dosage to 500 mg till Sep 2012. On checking the optic nerves and tests, she asked to stop the medication. As a process of weaning off I tapered the dosage to 250 mg for 3 weeks and then stopped completely. Immediately after stopping had dizzy spells, heavy eyes and more pulsatile sound. After a week of struggle, with NOs instruction started back on diamox 375 mg but still feel dizzy and more pulsatile sound even after 5 days Vision has got better with little heaviness and pain. Noticed my temperature has dropped to 96 and bp 107/62. Is something there to worry about? is the symptoms related to withdrawal or iih has flared up? My NO is very rude and says I dont take care of dizziness.:(
Wanted to stop the medication as me and my husband planned to start family in few months. I work in computers and feel so bad to be called as a sick person :(..
Will I be back to normal, scared of LP again.

It sounds like they weened you off the Diamox, so shouldn't have been any withdrawal. IIH doesn't always go away, so you just may have to manage it w/ a small dose and adjust w/ changes. If you have concerns about your current symptoms, I would check w/ your primary physician to make sure there aren't other contributing factors. There are people that have children w/ IIH..just do the research and make sure you're working w/ an OB/GYN that's well informed.

Hang in there!!!

First, may I welcome you to the forum.
Unfortunately, it seems to be a common practice for these docs to stop the meds when they are showing that they're working. It seems that IIH can got into remission but doesn't got away. Now, unfortunately, you have to try to chase down your symptoms, again. Sometimes, another lp is needed to bring the pressure down then follow with meds. I would recommend keeping a symptoms and meds logs. Keep track of how you feel and how things change that.
You were doing good at one point, hopefully it won't take long to get you there again.

Thanks a lot medmisfit and wylee!! Its been a week I am on medication but still not feeling any better :(.. Going thro' some tests now. Blood work showed elevated Liver enzymes (weird), had this when I was initially diag. Had ultrasound and found no issues. Now my GP didnt know where to start as my NO is stubborn enough to say this may not be high pressure as there is no optic nerve swelling...Lots confused and ended up with a cardiologist to check .. Am wondering why doctors dont go by facts , that I stopped taking diamox and flared up, so it should be high in ICP right..Oh God, treat me for that...Feel so frustrated and with all dizziness and headache, feel very low
:(...

Having a question here, I have been on diamox for almost 6 months and if I stop and restart again, will I be having the same side effects ?? I shouldnt technically as the medicine is already in my system right?? Any thoughts?? Confused if the diamox is causing the dizziness or its iih...

I don't know how Diamox long lasts in our systems. I know that I was told that for it to work the best, it is needed to be taken at no longer than every 12 hours in order to keep it at the same level. I only take one tablet a day. Not real sure what that is doing to my system, but it seems to be working OK for me.

I have also wondered with my dizziness, how much is due to meds and how much is IIH. Haven't found a very good answer to that. I am now on the lowest doses of all of my meds, and the dizziness is still there. I am going to try having my shunt adjusted to a lower setting and see if that helps. That may be the only way I will know for sure. It is that much of a fine line, which is why so many of us have such a hard time finding that "sweet spot" where everything is adjusted just right and we feel "normal" again. And then again, conditions change, so even that could change. Seems to always be a challenge.

Does any of this make sense?? Hope so.

I'm not sure why they're running all these different tests when you were already dx w/ IIH and Diamox was helping. Basically Diamox takes care of the symptoms, not the disease. I understand lowering your dose to see if you can manage symptoms on lower levels, but I don't understand why they're in a snit about your symptoms coming back..especially if they're the same as when you were diagnosed. No wonder you're confused and frustrated!!!
As far as I know, the Diamox doesn't stay in your system long term. However, your body is constantly changing, so it may affect you differently. I would definitely keep a symptom log to track changes. It may give the doctors more information and help them get back on track too. As far as the dizziness, I find it goes away when my shunt is functioning..I think it can be attributed to IIH and Diamox though, so depends on when you're experiencing it. How's that for confusing?! LOL..sorry. That's why the symptom log will help.
Good luck!

Thanks for your response guys!!! Tried to get an second opinion from Dr. Linda Gray Leithe (Durham) and it was nice she liked to see me tomorrow and perform Lumbar Puncture (LP). Keeping my fingers crossed. She believes that there may be few cases where the pressure might be high still do not show up as a swelling in optic nerves.
Hoping that am in good hands now ..
I just wanted to be out of diamox and plan for a kid asap. May be that will relieve me from all depression ..

Congrats!! You will be seeing one of the best in the WORLD!!! She is a wonderful lady as well. Please tell her I (Linda), said hello. She will explain all to you. Don't be afraid to ask questions either. Cannot wait to hear all about your visit.
If you want some company pm me. A friend is in the hospital that I was planning on seeing tomorrow.

I'm so glad to hear it..keep us posted!

Nithya, how are you feeling today? I am hoping that you don't have an after lp headache. As Jeff said, they are pretty rare the way that they do the lp's there at Duke. It was wonderful to meet you and your husband, and I hope that you are able to get rid of that dizziness and get started on your other project ;) .

BTW, you have a wonderful, caring hubby. He's a cutie, I mean a keeper......

Am doing great Linda ...
One good news is I did not get any low pressure headaches and definitely the experience is uncomparable with the first LP I had, I mean in Duke its lot better, just felt like an IV .
Thanks again for coming over. Nice meeting you.Hope you are feeling better too ...
Back on Diamox. Hopefully will get back to work by next week..

BTW , my husband will be very proud to hear what you said, def he is very caring

guys!!! This support site is awesome!!!

I am back again. Its been 2 weeks I had my LP and on 750 mg of diamox. Even after taking my meds ,now feel more tired,drowsy and more pulsatile sounds.Inspite of Sleeping everyday for 10 hours, in the afternoons, I feel very very tired and drowsy (kind of jet lag feel). Noticed recently that back of my head is little hurting (I never have headaches with iih). Could this be due to diamox or may be low pressure? Very much worried that if diamox is has stpped working suddenly.

It could be the Diamox..you're body may have gotten used to your current dose or side effects could just be getting worse. I'd definitely let your doctor know. If you're having low pressure headaches, your symptoms should pretty much disappear when laying down and get worse when up. If you haven't started, you may want to start a med/symptom log. It will help you keep things straight and track issues for the doctors. There is a sample in the Useful Guides and Printouts section.

I hope you feel better soon!
Take care,
Julie

Thanks for your response Julie!! Today I def found out its low pressure headache. Back of my head and neck was hurting so badly. My neck was swollen on top of it. I feel better when I lie down, when I get up there is a sudden offset of pain in head. But pulsatile sound is still there. Have emailed my neuro. But still confused should I continue taking 750 mg or not.

I would continue until you speak to your Neuro, he is the best one to tell you whether or not you should lower your dose and if so what to. If you're able to ring him if you can.

Definitey Heidi, got a reply from my neuro now, she asked me to lower the dosage to 500 mg and see how it goes

I'm glad your neuro was responsive! Hopefully, you'll be feeling better soon!!!Drinking something with high consentration of caffeine can help take the edge off. Cold packs will help w/ swelling and hot pad can help w/ muscle tension. Lay flat/rest as much as possible, and drink your fluids. I had low pressure headaches for 3yrs, so let me know if you need any other ideas.

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Thanks Julie!! Have neck spasm and taking it easy, lying down...Hoping to get better soon ....It was such a shock to my body stopping the medication as suggested by my previous Neuro-Opth, glad I changed the Neuro, special thanks to Linda(Wylee) for showing me the right direction (Dr.Gray)!!!

I'm so glad you got a quick respponse from your doctor, and I hope that lowering your dose will soon have things improving for you. Way to go Linda! Sometimes it's not always what you know but who you know.

Now am on Diamox 500 mg and I felt better for a while and now I feel tired and foggy in the afternoon everyday, is this common?

If Doc prescribes me extended Release Diamox, will it help with side effects? What is the difference between the 2?

I have recently been switched over to the extended release Diamox and it does seem to be helping me with the side effects. Like you described, I often felt kind of a "crash" in the afternoon as I was in between doses, and it seems like the extended release has helped that. My understanding is that it releases the medicine slowly throughout the day, rather than dissolving instantly into your system like the tablets do. It's been good for me ... you might consider giving it a try.

Waiting on the prescription from my Neuro for Diamox ER..

Awesome! I hope you find it helpful as I did! Let us know how it goes!

Last night was the first time on Diamox extended release. Was hoping them to be better than Diamox but having more dizziness with sequels. Am I starting from scratch on adjusting the side effects?
Feel more tired with headache...
Worried now :(