Hi all, I’m just wondering if anyone here has tried using the Diuretic, Acetazolamide (Diamox) for their PMDD?
My Psychiatrist has prescribed this to me and I was hoping to hear from others who have used this medication before I start.
I’m also interested to hear from anyone who feels they’ve benefited from Evening Primrose Oil? He was adamant that I should start using this too.
Thank you.
I know it is a contentious claim to say tinnitus developed from the vaccine, even if not attacking the premise that you believe vaccines are safe. Anyways, if you think yours developed due to vaccine, or maybe you think that's a BS idea, then from an inflammation event/autoimmune/delayed Bell's Palsy like scenario, you don't have hearing loss, then I wanted to pass on information about a treatment that has dropped the amplitude of the tinnitus significantly for me, and I think soon I may have real silence.
After you have tried prednisone (which I do recommend a brief try), then ask your doctor about trying Acetazolamide. I used to hear it everywhere doing pretty much anything a little over a week ago. Now, after about 1 week on it, I am having instances of having a hard time hearing it in quiet rooms.
Acetazolamide has its own side effects, I won't pretend to claim it doesn't. However, I will deal with it so long as it takes down the tinnitus. Hopefully, when I get 'pure' silence I can drop the medication too.
Good luck, I have had tinnitus for 3 months and two weeks. I hope you can find relief sooner!
Dose 1 of Moderna, Jan 9.
So I started taking Acetazolamide 4 weeks ago (250mg every 4th day I was prescribed) And oh boy did It help! My tinnitus is so quiet I can just ignore it with no problems and afterimages are almost gone! I had a major flare-up when I had a 3rd concussion but It soon was over. I'm happy that Acetazolamide is working!
[22M] I was diagnosed in November of 2020 after I had daily headaches and my opthalmologist saw extensive papilledema. Got referred to a neurologist. Had an MRI and a traumatic and inconclusive lumbar puncture. Neuro said it's highly probable that I have IIH.
I've been on Acetazolamide since the start of January. No real side-effects until now (except soda tasting super bad). For the past 2 weeks I felt bloated and constantly nauseous (way worse in the morning and also immediately worse after I ate). I also vomit every 2nd or 3rd day.
Did anyone experience this or could this be something else?
First time posting in this sub, sorry in advance if I broke a post rule. Y'all can remove if necessary.
I [28F] was referred to a neurologist who prescribed Acetazolamide to treat my recently discovered IIH (alongside other treatments and lifestyle changes), but I don't really understand how the medication works. I also don't know if I'll need to be on the medication long-term. The neurologists' bedside manner was... not the best and I didn't feel comfortable asking questions.
I’ve been told by my doctor that I can lower my dose, so I’m now taking half of what I used to. However I’ve had some pretty bad headaches and I’m trying to work out if it’s my body adjusting? I also think it could be caused by my new headphones/general stress so I wanted to see if this is a normal thing to experience?
Just like the title says I apologize if it’s TMI but Idk what’s going on. For the past month my urine has been cloudy.... has anyone else dealt with this? I’ve had urinalysis come back normal, blood work and labs come back normal... i have no pain associated with it. I’m not dehydrated because I make sure I drink a lot of water with this medication. So now I’m just wondering if it’s possibly from the medication?
Hello I made a post here yesterday about seeking help and how I physically cannot take acetazolamide.
When I first had it prescribed I had a very hard time with it either vomiting or being sick for days after literally one spoon full. I was also having issues with weight loss and still am three years later.
I told my specialist about this but she told me that acetazolamide was the only medication and that there where no others. I asked her if there was any medication in capsule form or anything as I cannot take acetazolamide in liquid or tablet form, she said no.
When I posted about advice on here ppl told me about topamax I’ve legit never heard of this till today. I found out out it can help with weight loss and it comes in capsule form, I even checked if you could get it in the uk, which you apparently can.
I’m very confused as for the past three years I have no improvement and have basically been begging for help from the doctors and even thinking about the surgery as I thought that was the only other option.
So do doctors do this often??? This is the first time I’ve ever dealt with something this serious and I was diagnosed at the age of 13 so I never thought to research or ask anyone about this. I am now 16 and very stuck and scared.
Hi! For background: I’m at 24 y/o female who was diagnosed with iih December 2020. I got an LP January 20, 2021 and 5 days later was migraine free and started taking 500mg of acetazolamide twice a day. I’ve had the standard side effects and they hit pretty hard the first few weeks.
I have been taking iron for my anemia and lost 20 pounds before my follow up with the ophthalmologist which was on March 3rd. There was a huge decrease in the swelling and much progress made towards being in the normal range. She said we could cut down the meds to once a day soon since everything is on the right path.
My problem: I’ve been taking the acetazolamide for almost 8 weeks now. I don’t know exactly when it started, but I started to get mild pain in both knees maybe 4-6 weeks ago. I thought it was from wearing crocs almost all day every day...I’m a nanny and they’re the best shoes for working with kids, but I have been trying to wear tennis shoes more often and never wear crocs when doing a lot of activity or exercising now.
This felt like it helped at first but then I didn’t see a difference. Also, it doesn’t matter if I am super active the day before or not, the pain seems to vary for no reason. This week it has gotten almost unbearable, especially the first few hours after I wake up. I am overweight but never had this problem before and feel that this shouldn’t start after losing 20+ pounds. My knees really feel fine when I am standing, but sitting for more than a few minutes starts to hurt and sitting down/getting up especially when the seat is low is the most painful.
My ophthalmologist says she’s never heard of this being a side effect of the medicine but that joint pain is listed as a possible side effect. She said we can try cutting the meds down now, but I don’t want to do it too early if it isn’t the cause.
Has anyone else experienced this? Did anything help? I’m willing to try anything to relieve this pain and keep increasing my activity. I really don’t know where to start for relief.
Hi fellow IIHers.
Hope you're all doing well.
I've recently started back on Acetazolamide due to an increase in my CSF (diagnosed with IIH back in 2015), but have had chronic headaches that are pretty much non-stop, so my doc is putting me on Topiramate. I have seen taking both tablets can cause very chaotic side effects and I'm just wondering if anyone takes both?
Thanks.
My neurologist put me on Acetazolamide just curious if anyone has any information on it being helpful or any side affects that you experienced? (Diamox)
Hi there r/iih; writing on behalf of my partner as she has severe social anxiety - She's got diagnosed IIH (24y/o) and has been battling with the side effects of Acetazolamide since Christmas last year after she went for a regular eye test and had no preexisting symptoms or signs. Very much came out of the blue and she had an LP to reduce the pressure from 30, as her optic nerves were extremely swollen. Not a good Christmas - Recently she was able to come down from the prescribed 1000mg to 750mg as the docs were happy with her progress, which has so far been alright.
At the moment most of the side effects have gone, bar the taste disturbances - She had a bad twitching / shaking in the eyes when she was on 1000mg, but now that seems to have subsided. When she last went for her follow-up appointment, they were happy with the improvements on her optic nerves and happy she's losing weight to try and mitigate the effects of IIH.
Since reducing the Acetazolamide from 1000mg to 750mg, she's been getting constant headaches on the front of the head and the temples - Something she's never really had regularly before. Is this normal?
She does struggle to focus with her eyesight, and has always done, but sometimes she says her eyes feel like they have some sort of 'film' over them, which apparently feels abnormal.
Has anyone going through remission experienced this sort of thing? Is it normal?
Anyone with iih ever have neck, arm pain n tension? in addition a previous head injury before your diagnosis of iih? interested in the correlation between the diagnosis n previous injuries. Also just started on the meds to lower the csf and the symptoms are pretty horrific frets hands tingling lips n face numb, nausea, dizzy, confusion. 😵🙄 This sucks..
I've been taking my medication (500mg a day) for about a month now but unfortunately due to my doctors being terrible, there was a couple of days where I ran out and couldn't take it. Ever since I've started taking it again I feel nauseous and tired and just today I threw up. Is this normal and should I consider asking my doctor to lower my dosage? I know I'm already on a low dosage but I was wondering if anyone has started on anything lower before? I have a big phobia of being sick so I can't imagine continuing like this :/
I was diagnosed in July after a routine eye test. I had had some symptoms like a low level headache and floaters for a few months but I’d just been ignoring them. Now been on aceta since (3 months next week) and am finding my eyes feel dry and achy often - but not in a pain/headache way. Anyone else?
I read that it has been shown to be an effective off-label treatment for PMDD, but am wondering if anyone can share their experiences? Any side effects?
Edit: here's the article I read: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3942558/
Hey everyone. It's my first post here, so brief history- I've had simple partial seizures since i was 11, got diagnosed at 17, and the neurologist who diagnosed me didn’t put me on meds. I had a gran mal seizure a month before I turned 19. My GP started me on meds the next day and I started seeing a neuro (not the same one who originally diagnosed me). Anyway, i’m currently 38 and my seizures are still not 100% under control. I have catamenial epilepsy with frontal lobe simple-partial seizures on the right side of my body. I was on different combinations of the same meds for years- tegretol, keppra, and lamictal. I came off the tegretol a few years ago, but my doctor had been still adjusting the keppra and lamictal.
Well, my neuro just retired. I think he’s been my neuro for for like over 15 years and is very oldschool. I was set up with another doctor in the same practice and had my first appointment with her. I told her that my seizures still aren't 100% under control. She thought Diamox might be a good med to try. she did tell me that common side effects are frequent urination, possible headaches, and possible tingling in the fingers. I have experienced the more frequent urination, and also this weird thing that happens when i drink soda. But thankfully no other side effects. I'm still on one pill a day for another week, though, and then I go up to two pills a day.
So, I have a couple of questions- does anyone here take this medication for seizures? In my online research I mostly saw it being used to alleviate altitude sickness, to treat glaucoma, and to treat another condition that has something to do with increased pressure in the head. I rarely saw it mentioned for use in epilepsy treatment. How effective is this med for epilepsy treatment?
I also read that the side effects can be terrible. I'm hoping that the number of the horror stories about the side effects are just a result of the fact that people only review something if it's exceptionally bad (therefore you won't see how many people get manageable or minor side effects). As I said, my side effects have been very little right now, but I'm afraid of what will happen when I go up to my regular dose soon.
So, does anyone else have personal experience with this medication and can answer my questions above (and add additional comments if you have them)? Thanks!
I got diagnosed with ihh a few weeks ago and I’ve recently had a lumbar puncture and was put on acetazolamide the same day. I’ve been on the meds for about 10 days now and along with the regular side effects which aren’t fun but aren’t the worst thing, I’ve been getting really bad anxiety and feeling quiet low, has anyone else had issues with their mental health on these tablets and how did you get through it?
Other than giving a bunch of NaCl or a modified hemodialysis.
I had an LP on Tuesday. While the procedure was fine, my pressure was at 25 and they took out 10. I’ve clearly been used to the higher pressure because I’m now dealing with a headache and I wasn’t getting headaches before!
Anyone taking acetazolamide? It kinda makes my lips tingly and makes me a little dizzy. I’m on day 2. Does it get better?
I didn’t have symptoms of IIH, it was found during a routine eye exam. I did a visual field test and it is clearly impacting my vision. Anyone else experience this and see it improve with meds?
Fingers crossed there is hope!
Please explain this like I'm 5 because I tried looking it up and I still don't get it.
Someone please walk me though the ammonia breakdown and how HCO3 and potassium are involved. Please and thank you!
My main question is how long does it take to start feeling a difference? My Neuro seems to think it will make a big difference for me and I hope he is right. Does everyone get bad side effects? Im going to try it and hope that i dont get many. How much extra water/day should I be drinking while taking it?
Also, did anyone else have empty sella on their MRI? That seems to be what made my Neuro know for sure that I had iih.
Is anyone else in the UK being told there’s a shortage of acetazolamide at the moment? My usual prescription didn’t arrive at my pharmacy this week. Today they gave me their last 28 tablets (two weeks worth) and I was told to phone again next week to see if they can get any more because there’s an ongoing problem. I know there’s so much going on with coronavirus right now but I’m freaking out because I rely on these tablets way too much. I take 250mg twice a day.
FA 2019 page 594
i just dont get it
Hi All
I've been taking 1000mg of acetazolamide daily for like a week or two now. I finally don't feel 24/7 exhausted (at one point I was sleeping more than 12 hours a day and feeling like crap). Now when I take it I make sure I drink lots of water and eat a small meal with it.
The only issue I'm running into is the fact my nose and lips get a tingly feeling. Like they've been shot with novocain (like if you go to the dentist). I've read that my extremities can get tingly feelings, but I was assuming that was hands and feet and not so much my face. Anyone else experience this? I don't think it's an allergic reaction because nothing is swollen. I don't want to call my doctor unless I have to because other than that I feel within my normal range.
I told my dr i wouldnt take a diuretic and he prescribed Acetazolamide. Which is a fucking diuretic, and in looking it up it specifically states not to take it with amphetamines. I take 50mg vyvanse. He told me 'dont worry about it'.
Im chronically dehydrated(post op gastric sleeve),had low potassium in late nov and had to take liquid potassium. Im really not comfortable trying this medicine. I wish i could actually have a conversation about my options with this dr but i feel like specialists are so often just detached and going pt to pt. I have other health concerns (endometriosis, hashimotos, i mentioned im postop gastric sleeve, suspected lupus etc) and try to balance things and i dont need to become more dehydrated than i am already or having more fucked up electrolytes etc After my LP today the nurse came in and told me he was prescibing the med,she said it was a seizure med not a diuretic and i think she was just trying to present it in a way where i would take it This med is listed as increasing the potency of amphetamines, it doesnt sound safe to mix w my vyvanse
I know it is a contentious claim to say tinnitus developed from the vaccine, even if not attacking the premise that you believe vaccines are safe. Anyways, if you think yours developed due to vaccine, or maybe you think that's a BS idea, then from an inflammation event/autoimmune/delayed Bell's Palsy like scenario, you don't have hearing loss, then I wanted to pass on information about a treatment that has dropped the amplitude of the tinnitus significantly for me, and I think soon I may have real silence.
After you have tried prednisone (which I do recommend a brief try), then ask your doctor about trying Acetazolamide. I used to hear it everywhere doing pretty much anything a little over a week ago. Now, after about 1 week on it, I am having instances of having a hard time hearing it in quiet rooms.
Acetazolamide has its own side effects, I won't pretend to claim it doesn't. However, I will deal with it so long as it takes down the tinnitus. Hopefully, when I get 'pure' silence I can drop the medication too.
Good luck, I have had tinnitus for 3 months and two weeks. I hope you can find relief sooner!
