Acetazolamide in IIH

[@pineapplemocktail]

How fast does it reduce the intracranial pressure?

[@jaimimuth8671]

So what happens when you are not a obese women and the doctors are stumped because diamox and Topamax worked at first but after so long they stopped being effective.....

[@cherylj6038]

Dr. Lee - I have IIH and I'm hoping to have your help with my optic nerves. I've heard you're the best! I look forward to setting up an appointment!

[@icedgodz428]

When can you come off diamox? (If even possible?)

[@jessli369]

So what can we take to keep from getting acidosis and are there any other supplements we should be taking? How often should the our kidneys and livers be tested to make sure damage isn't occuring?

[@AshleyOliviaDaCosta]

Haha “be worried about acidosis” ok. What should we do to prevent or treat our acidosis? Me worrying about it isn’t making it any better.

[@RyeJD]

Fantastic explanation

[@funpheonix9752]

This is an interesting video! I have IIH and I take Diamox.

[@BLFulle]

Does the medication make you feel sick? I feel sick.

[@MK_pump]

@@BLFulleno

[@anamariasalinas9862]

Where are you located Dr Lee?

[@philipbarton2056]

I seem to have got this from taking just 4 tablets of doxycycline (I wish they had informed me of the risk of this!) what the heck do I do now?

[@amvega84]

Would it be beneficial to take a potassium vitamin along with acetazolamide to prevent any issues?

[@thecowardlydragon3982]

My CFS Nurse said No when I asked her this x

[@hn9455]

@amvega84 I had short lasting IIH post blood patch and used Diamox maybe 2 or 3 days to decrease intracranial pressure. I got the finger zaps. I took an OTC potassium supplement and that stopped the side effects.

[@anamariasalinas9862]

I am about to send all your videos to the Neurosurgeon that I went to 🫣 he needs to learn from you

[@newbermuda]

great explanation, thank you!

[@trinaP23]

Thanks for this information. I am taking Acetazolamide 125 mg. It does same to helping with headaches but i still hear the noise in my hear and sometimes what sames like my blood rushing through my skullor pulling. One of the side effect I am most afraid of is the kidney stones and other issues you discussed. Is it Ok to take a break from this med.

[@getbrite4516]

I do believe that is what caused my kidney stone and its so painful

[@DeviantMotives]

Excellent info

[@nawalkhanouchi6844]

you are the best ever

[@betsya.9884]

Thank you for the info .. I have to worry about my kidney now …also I just started the meds 500mg twice a day I’m so drowsy all day.. idk what to do with this condition there really isn’t a cure just treatment but even some of the treatments are aggressive the surgery or meds .. I get the pressure headache they are so bad..

[@christybecton8175]

Get a pillow that supports your back and spine it will help with the headaches

[@rosewatson1460]

Do you do international consults? I am in New Zealand and highly suspect I have IIH. It seemed to happen out of nowhere 7 years ago. I was having alot of vitamin A at the time & I have since been on steroids for ulcerative colitis which has caused the pain to become crohnic and debilitating. I had a head injury & meningitis as a baby. I've spent thousands in the past 3 years on seeing private nurologists who are just calling it a headache. I've had a scan which showed 'injury all over the brain due to pressure or fluid and fluid filled gaps & fluid around the optic nerves' I don't know what this means and this was never put into my notes. I've been treated by an osteo, chiropractor, I've had massage & used a tens machine, these make it so much worse. I've had nerve block, steriod and botox injections with no change. I feel like my symptoms match IIH but Dr's here don't know anything about it. I am happy to pay to talk to a Dr who does. Thank you 🙏

[@peiyunwang6282]

Hi Rose - just saw your comment while watching Dr Lees awesome video, I am one of the ophthalmology trainees in NZ - we definitely do see and treat IIH in our clinics - please see your optom/GP for review and get a referral :) PTC/IIH can cause irreversible vision loss and it is important that you are seen timely - Regards

[@johnwallace5284]

if you have had it for that long havent you done a lumbar puncture and an eye exam?

[@rosewatson1460]

@@johnwallace5284 our health system is terrible.

[@rosewatson1460]

@@peiyunwang6282 I have recently lost vision in my right eye and been to the optometrist, they done a referral to opthomologist which was rejected

[@Haider129-j1q]

Is acetazolamide help to reduce spinal syrinx?

[@danielle3746]

Diamox gives me nose bleeds. Why does it give people nose bleeds.

[@ashleymartin7642]

Can you develop the kidney problems if the dose is to high? I take 1000 mg at night and have for 5 years. I have lost weight and dose has not been adjusted since. I am having alot of kidney issues, even stones. Please help!!!

[@ashwinikini243]

Yes, there are some side effects on the kidney. You would need to talk to your physician regarding risks and benefits.

[@mickythetool]

I take 750 mg a day make me feel tingly like pins and needles mainly in my hands and face just over a year now and I do get kidney pain since taking these

[@shoppingatthebigo575]

how much you lost

[@jay_skeletonflower]

@@mickythetool are you getting regular blood tests to check your electrolyte levels? That’s a sign of low potassium levels

[@mickythetool]

We take these tablets thinking all will be ok and we don’t know any background on them just goes to show they say take this and we do I’ve had acetazolamide for over a year now and my lumbar punctures are the same reading every time so there abouts making me question wether they actually work 🙁

[@johnhusar5783]

i have just been diagosed with iih does and have been taking diamox does it cause severe stomach pain?

[@phoenixtears25]

john just for a little under a month at the start.

[@nicolaatkinson7542]

It can. How long have you been taking it? Depending on, many things about the state of your health prior to taking them, you most certainly can get severe nausea. I did and it lasted the entire time I was on it, which was over a year. I had to be on strong stomach lining medications as well as anti-nausea meds. Goodluck. let me know if you have any other questions. also, ask your doctor if you can.

[@elisaricciardi8087]

Hi, I’m a patient who has IIH. I was currently taken off diamox due to an allergic reaction, and but on methlazolamide, i have grade 3 paps. I’m worried the metholzolamide won’t work as well as diamox, any thoughts on other medications to treat diamox, such as metholzolmide and their effectiveness?

[@amvega84]

Ask about topamax

[@echase416]

With regard to weight loss as an intervention. My understanding is that among those with obesity, only 5% will lose the weight and keep it off long term. Weight loss surgery such as vertical sleeve gastrectomy [VSG] has been improved surgically with regard to safety over the last two decades, to the same complication rate as laparoscopic gallbladder removal, or lower.

[@essamalrawdhi2926]

whats the alternative drugs if you found it

[@PunkRockBarbie]

From my research, the only other medicine is called Topomax, and it doesnt quite work the same, but can work well for some people.

[@essamalrawdhi2926]

@@PunkRockBarbie Thanks

[@karlinhahf]

@@PunkRockBarbie topomax is usually used if theres venous issues too

[@MG-hq9ik]

Diamox is killing me :(

[@taylee7531]

How please explain

[@PunkRockBarbie]

@@taylee7531 I cant say for OP, but I've been on it for around 6 weeks and the side effects are absolutely miserable. I'm exhausted 24/7. My hands, feet, and sometimes my lips go completely numb. My appetite is gone. I've had nausea, diarrhea, vomiting, and changes in taste. It is a miserable drug to take, but unfortunately it's the most effective one. Others experience worse side effects than me. I'm fortunate that mostly the side effects are... tolerable.

[@anamariasalinas9862]

How??? 😢