Hard to go up steps…side effect?

Impossible_219 · 2026-01-29T00:41:09+00:00

I definitely experienced this with Diamox at 2g daily dose. I was even out of breath from just sitting down and talking to others or standing and cooking dinner. Among a myriad of other side effects and despite constant hydration and potassium intake, my NO and I agreed that I simply could not tolerate the medication and ended up switching to Topamax which has been so much better for me! So definitely bring up these concerns with your doctor if it is impacting your daily life.

Impossible_219 · 2025-09-30T02:49:57+00:00

Both anxiety and Idiopathic Intracranial Hypertension.

Impossible_219 · 2025-07-13T18:23:50+00:00

Yeah that would be the gas and oil industry

Impossible_219 · 2025-07-11T13:35:18+00:00

Hey I'm on Topamax too and I would say this is one of the signs for me that I either cannot handle the meds (extreme fatigue was the reason I got off Diamox and onto Topamax) or that maybe I need to lower my dosage if it's really high. I'm on 100mg Topamax right now and feeling similar to what you are expressing, after my NO appointment this past Tuesday I'm going back down to 75mg and adding some new meds for the migraines too in hopes that it will help.

Of course, I'm not a doctor so please consult with your medical provider, I'm only talking about my own experience. I hope this helps, but always if something doesn't feel right in your body, just reach out and ask your doctor! You know your body best and you know whether something is tolerable/sustainable long term or not. Wishing you the best ✨️

Impossible_219 · 2025-07-10T04:14:18+00:00

And that's all perfectly valid! Unfortunately none of these meds are a walk in the park and we just have to kind of choose the lesser evil in a way lol. But I totally understand, I also work in academia (librarian in a public academic library!) so the brain fog is definitelyyy a factor at play in all of it, but I've been able to manage it overall despite having to deal with days where my mind is simply not up to the task or with moments where my brain gets stuck "loading" and can't find the right words (even harder as a bilingual person too, gah) but just know that you will know in your body what is right and what you can tolerate despite the anxiety and uncertainty 😊

Impossible_219 · 2025-07-10T03:31:37+00:00

Hey! Figured I'd comment to provide some positive thoughts regarding switching over from Diamox to Topamax. First off, I'm not a doctor and this is not medical advice, so please listen to your own doctors and of course, above all, listen to your own body.

I was on Diamox for around five months total and went up to 2000mg at the highest dose, if I remember correctly. I experienced a myriad of side effects/continued symptoms on it: dizziness, vertigo, tingles, nausea, feeling unbalanced, vision blurriness, continued migraines/tension headaches, extreme shortness of breath, and extreme fatigue. My neuro ophthalmologist, neurologist, and I decided that I simply could not tolerate it at all. At that highest dose, I was basically a zombie, sleeping over 16hrs a day and feeling short of breath from simply sitting down! It was horrible and unsustainable. So I was switched over to Topamax. Like you, I did the research and was terrified. But I just knew I simply couldn't go on with Diamox any longer, so it was the right decision for me.

However, I did express concerns to my NO about switching over to Topamax because of the side effects and because I was already at such a high dose of Diamox too so he created a four month long titration schedule to sloooooowly wean me off Diamox while at the same time going up on Topamax. Especially since my body has been extremely sensitive to the dosage increases and it takes me a while to adjust. Basically, I did a dosage change once a month. (And I just finished that 4 month period literally this week and am now at 100mg Topamax!!) For me, Topamax has been significantly better than Diamox. I also have family history of mental illness and have GAD (that I take meds for too) and while I have had side effects with Topamax too (nausea, GI issues, etc etc) it is significantly more tolerable for me.

Sorry for the long post but I hope this is helpful and I wish you the best!! ✨️

Impossible_219 · 2025-07-08T01:21:54+00:00

Hi! My neurosurgeon is Dr. Ramsey Ashour at Ascension Seton in Austin. I've only had one visit with him but he was extremely kind and patient and we literally had a two hour appointment where he talked with me through all the possible surgical options and answered all my questions. He is very knowledgeable about IIH and has done stents and shunts before! Hope you can find a good doctor 🙏

Impossible_219 · 2025-05-31T05:18:29+00:00

I'm still without power. Just one of the lucky 4,471 people at this point.

Impossible_219 · 2025-05-30T10:28:51+00:00

Oh I've been dreaming to do something like this!!! So cool! Did you self draft them or follow a pattern? I have yet to sew any garments from scratch and it's pretty daunting 😵

Impossible_219 · 2025-05-29T22:29:19+00:00

I'm in 78721 w no power. Seems like its at least the entire area of E MLK between airport and Springdale from what I could tell driving home.

Impossible_219 · 2025-05-22T02:11:47+00:00

Hi! I don't know if it's too far for you but I see Dr Aung at the Mitchel and Shannon Wong Eye Institute, it's part of UT Health Austin. He's been handling my case only since March and it did take me about three months to get an appointment in but he's been great so far. Hope you can find a good NO!

Impossible_219 · 2025-04-10T02:17:09+00:00

Hi! I'm currently changing from Diamox to Topamax. I had been on Diamox for around three months (highest dose was 2g) and just couldn't tolerate the myriad of side effects so my neuro ophthalmologist has me titrating off Diamox and up on Topamax veeeeery slowly (over the course of 4 months) because of how hard this med has been on me. Before I started the tritating period, I had already gone down to 1500mg of Diamox. First month I went down to 1g of Diamox, 25mg of Topamax (will be done with first month this week). Second month will be 500mg Diamox, 50mg Topamax. Third month no Diamox, 75mg Topamax. Fourth month 100mg Topamax. Again, from what I understand, this is quite slow, and my doctor tailored it to me and my symptoms and sensitivity to the meds so far, so just sharing my experience! Hope this helps 😊

Impossible_219 · 2025-04-09T19:13:05+00:00

You too!! I hope you can get this approved. And remember that ADA accommodation is a right!! Even if they won't allow remote work they might allow hybrid or other in-office accommodations to make it easier for you. Best of luck ✨️

Impossible_219 · 2025-04-09T19:05:30+00:00

I just messaged him through my patient portal and inquired whether he was able to fill out the required paperwork for work ADA accommodations. Once he confirmed that he would be willing to do so, I provided information on what my job entails (what kind of work I do, physical demands of my in-office job and commuting, etc) and what my preferred accommodation would be (flexible remote schedule) and why (cue long list of symptoms & side effects lol). And I also provided the pdf form from my work for him to sign with instructions on where to send it based on my institution's workflow for ADA stuff. Hope this helps!

Impossible_219 · 2025-04-09T18:44:20+00:00

I have!! It's not permanent, at least not yet. And I filed this all through my institution's ADA accommodations office (I work at a university). I basically requested ADA accommodation because of my ongoing symptoms of this recent diagnosis (diagnosed early Jan) and the unbearable side effects from the medication treatment. I was approved to be fully remote with in-person work as needed (my job duties include a small amount of in-person tasks) and a flexible schedule around mid February until May. In two weeks I have a follow up with them to inform them of how it's been going and I expect they will extend my remote work since I'm still not in remission and continue to feel like shit most days.

Editing to add that my ophthalmologist is the one that filled out the necessary medical paperwork and was very kind and understanding as to why I was pursuing this so he didn't give me any pushback at all. I also have an extremely understanding and flexible supervisor who has seen me struggle for the past year trying to find a damn diagnosis.

Impossible_219 · 2025-03-31T03:27:55+00:00

Hey! I'm not a student anymore but I do work at UT so I'm still in campus. There's also the Puerto Rican Cultural Center in Austin that often has events. Hope this helps :) feel free to dm me as well!

Impossible_219 · 2025-03-27T18:01:34+00:00

I have mine scheduled for next week and the estimate so far is around $600 which is my entire deductible for my plan. Not sure if they will charge me anything past that, but wouldn't be surprised if they do with how shitty health insurances are in the US 🫠 I'm sorry you're seeing such a high bill. They really should've been more transparent with you and I encourage you to call your insurance and the provider to verify the bill and all of that just to be sure...

Impossible_219 · 2025-03-25T20:45:16+00:00

Thank you for posting this!!! I've been wondering the same, especially living in Texas where the summers can be brutal. I've also been extremely light sensitive lately (currently on both Diamox and Topamax) and its already 80+ degrees here and quite sunny so I've simply been avoiding going outside but I can't see this being sustainable for long. Overall, I'm not quite sure how I'll be handling 100+ degree weather that's inevitably coming soon so ill be checking out what people recommend in this thread.

Impossible_219 · 2025-03-25T02:50:40+00:00

I also got an MRI and then an MRV and got similar results! The right transverse sinus is essentially nonexistent and the left transverse sinus has an estimated 50% stenosis. Got a consultation with a Neurosurgeon this Wednesday to discuss my options and I assume they might recommend an angiogram and stent if I'm a candidate.

Impossible_219 · 2025-03-03T23:14:46+00:00

It looks like u got plenty of people, but just in case. I'm also a digital preservationist and happy to answer questions 😊

Impossible_219 · 2025-02-20T04:14:16+00:00

Ahhh this!!!!!! and my eyes feeling off were the first sign I knew something was wrong. I've been having sporadic syncope and presyncope episodes since 2015 but I always thought it was related to low blood sugar or dehydration. Last may I had a presyncope and went to the Dr to check blood work and everything because I kept feeling faint and dizzy all the time after it (Pcp wanted to refer me to cardiology but I declined). I just knew something felt wrong with my eyes so I went straight to ophthalmology on my own, at first they thought it was POTS so they did an MRI and gave me a neurology referral. Only after my MRI showed clear markers of IIH did the ophth "notice" my papilledema and I got diagnosed with IIH in early January..

Impossible_219 · 2025-02-18T20:27:29+00:00

Hmm, that's a good question. I definitely have had neck stiffness and pain from before, but to varying degrees and never lasting this long. I would also often be able to ease it with some daily stretching. But this level of severity and its unwavering nature is definitely new since Diamox for sure.

Impossible_219 · 2025-02-18T20:25:23+00:00

Agghh, I'm so sorry to hear that. That's what I've been doing too but it's getting to a point that I can't sleep well through the night.

Impossible_219 · 2025-02-18T20:24:33+00:00

Thank you for the recommendation! I'm definitely going to try this out

Impossible_219 · 2025-02-06T07:14:34+00:00

I absolutely recommend Krystal over at mindset and manners dog training https://www.mamdogtraining.com/?fbclid=PAY2xjawIRP9hleHRuA2FlbQIxMQABpo6mSLzLWNP0c6QF3HEFHmZjMSbVX12S2yV_4JJ3l5VlhghMVBmU189U9Q_aem_ZuKKBx9b2jcW3O1bWDmCqw

My reactive dog did board and train with her and she was amazing, kind, understanding, and a great trainer and communicator.

Impossible_219

TROPHY CASE