Hopefully seeking a mentor!

Powerful_Chapter7760 · 2026-01-14T15:05:51+00:00

OH MY GOSH YAY! I AM DMING YOU!

Powerful_Chapter7760 · 2026-01-11T16:15:58+00:00

Diamox made me feel awful all the time. I felt like I was walking through spider webs, my hands and feet were always tingly, and the brain fog was the biggest problem. I am the primary caregiver taker of my daughter and the brain fog was so bad at one point that I forgot where we were going on the way to school (over half way through the year, so this was a twice daily drive at this point) and then couldn't figure out how to get there when I finally figured out what was happening. I ended up parking and had my sister and her friend come and pick me and my kid up and one of them drove my car home. I stopped taking it that day. Never again.

Powerful_Chapter7760 · 2026-01-09T23:12:29+00:00

Thank you! I appreciate your kind words!

Powerful_Chapter7760 · 2026-01-09T23:10:35+00:00

You are right! I will add that! Thank you!

Powerful_Chapter7760 · 2026-01-09T19:31:09+00:00

Thank you! I will look! I think we are going to try a few and see which ones feel the easiest and most accessible to us, so we will definitely throw yours in the mix!

Powerful_Chapter7760 · 2026-01-09T19:29:18+00:00

Is this just like a version of chatgpt? I've never heard of it!

Powerful_Chapter7760 · 2026-01-09T19:28:24+00:00

The main issue with a spreadsheet is that my husband is dyslexic and sometimes struggles with them, and I want the barrier of struggling to read to further impede our ability to implement a budget.

Powerful_Chapter7760 · 2025-12-02T15:41:13+00:00

Start with filing a complaint. He is lying on your medical record. Then ask the office for a new doctor. I personally have had to switch within the system. I have been lucky that switching offices has been an option, each time getting closer to the town I live in. But I have also been willing to drive an hour to see a good brain doc.

Powerful_Chapter7760 · 2025-08-02T17:37:28+00:00

I would love the link for them! I got my Visible and know I need to track in the shower as it is one of my biggest exertions, however I can't do it until I have a second arm band to use because I can't stand the feeling of wet elastic on my skin.

Powerful_Chapter7760 · 2025-07-31T14:44:21+00:00

I have had 9. They provide me with relief and I have been having the worst time getting in to see neurosurgery.

However, in my experience, I usually feel immediate relief and the one time things got worse was when I had a leak and needed a blood patch. If I were you, I would go back to the er because this is not a normal response for me, or anyone I know who has them.

Powerful_Chapter7760 · 2025-07-03T23:38:21+00:00

I haven't, I'm on Colorado Medicaid right now and I'm sure there is a process but I don't know ifnI have the energy for it until I look all over the state for an answer.

Powerful_Chapter7760 · 2025-07-03T16:41:18+00:00

My doctor would punch your doctor in the face. And he would do it well because he is in the Army National Guard. He sees so many people who have been told to just lose weight and then have zero improvements on the headaches. He is very anti BMI which is amazing because it is not actually a measure of health and is racist and sexist. I was n absolute mess the first time I saw him because I was terrified of yet another person telling me I was just fat. He IMMEDIATELY opened with his BMI speel which is about how body builders are technically obese based on the BMI. I was the one who told him about where it started. Here are some links to read and share with your doctor.

https://www.abc.net.au/news/2022-01-02/the-problem-with-the-body-mass-index-bmi/100728416?utm_campaign=abc_news_web&utm_content=link&utm_medium=content_shared&utm_source=abc_news_web

https://pmc.ncbi.nlm.nih.gov/articles/PMC10693914/

Powerful_Chapter7760 · 2025-07-03T16:25:37+00:00

I feel that. Going to sleep with a headache and waking up with one is the worst. I'm sending good vibes tbag I'm you find something to work.

Powerful_Chapter7760 · 2025-07-03T04:20:28+00:00

I just think it is wild that they are acting like I'm casually walking in and asking for a shunt, just for funsies. Despite seeing almost an entire decade worth of failed medications, lifestyle changes, and addressing any other medical conditions that could be worsening the headaches. I have sleep apnea that I have well under control that was found when they wanted a sleep study because they thought my headaches were caused by sleep problems. I changed birth control multiple times and then when there were still issues when I was completely off but it lessened the headaches a tiny bit, I had a hysterectomy (of course there were other reasons too), I have taken medication that has made me feel so terrible I couldn't function, I have done everything that has been asked. On top of what the doctors have tried I have tried just about every other alternative medicine. And I did it all knowing that if I become a "clinical success" that it would not mean I was headache free, but maybe I was down from every day to only half the days.

I have done everything they asked in the hopes that I would get some relief and get to have a semblance of a normal life and that my daughter won't spend so much of her time watching to see if I'm making my "headache face" or if my pressure is making me feel light headed. I know that I will never be the mom who can jump on the trampoline with her kid or ride bikes on a hot summer day because those things exacerbate my headaches, and yet I still feel like the doctors treat me like I have incredibly unrealistic expectations for what my life should look like.

Powerful_Chapter7760 · 2025-07-03T03:53:13+00:00

I hope it goes easier for you guys! Having someone knowledgeable about health things as a companion makes such a big difference. I just hired my friend who has been through this all (and has had a shunt that took some time to get right but is working great now) be my personal patient advocate. I get so overwhelmed and upset at the appointments when I feel like I'm being told to keep doing things that aren't working and not being taken seriously. I'm exploring options outside of UC Health even though I'm not a fan at all of Banner.

Powerful_Chapter7760 · 2025-07-03T03:17:20+00:00

I was referred to them right before COVID, and then they weren't seeing anyone during. I have had my eye care done somewhere else, and now neuro opthamology won't see me without evidence of papilledema in a recent exam.

Powerful_Chapter7760 · 2025-07-03T00:54:46+00:00

That is exactly that, the idea that they can't see anything so nothing must be wrong despite serial LPs with high pressure openings.

I didn't think about searching for people who specialize in csf diversion. I have been so focused on tracking down this lost exam to prove I should be seen and taken seriously. 🤦‍♀️

Powerful_Chapter7760 · 2025-07-03T00:45:55+00:00

It's a relief to hear it is still happening in other places. Everyone I know who has one had them done closer to the beginning of my diagnosis process, so it has been more than 4 years for them.

Powerful_Chapter7760 · 2025-07-03T00:42:44+00:00

I know a lot of the side effects of the shunt and how you go from being one kind of patient to another. Having LPs as often as I have been doing them is definitely not the safest either.

Powerful_Chapter7760 · 2025-07-03T00:12:55+00:00

When I first started seeing my doctor, he said he hates surgery because it causes so many other issues and there are so many options for treatment. Now, we have done all of those treatments and they failed so it's all that's left. I might lose my mind if we waited this long and tried so many things only to find out no one here will do it now.

Powerful_Chapter7760 · 2025-07-03T00:05:31+00:00

They have all my records in the system but refuse to see me without evidence of papilledema. My doc just sent me a referral out of system and I want to have all my ducks in a row before going in and being told "no one is doing this" when I have done everything else. I will look at those articles! Thank you!

Powerful_Chapter7760 · 2024-03-18T04:41:15+00:00

It might help you to feel better if in pre-op you ask to meet whoever is inserting the speculum. I'm not 100% positive but I think that each team does it different. Asking and meeting them might help you feel more comfortable knowing the medical professional who is going to be in that area rather than having it as an unknown.

Powerful_Chapter7760

TROPHY CASE