IIH lost focus, memory and concentration

Hi,

I am experiencing some difficulties between my pain, declining memory, and work/stress. I'm going to share what I feel is happening, and I hope some of you have some wise words of previous experience to pass along.

I was diagnosed with migraines in 2009 and in 2014 my ophthalmologist noticed signs of papilledema and wrote a letter for me to take to my neurologist the following week suggesting a lumbar puncture. New diagnosis IIH. My neurologist believes I have a combination of migraine and iih. Fortunately, my optic nerves are ok per my neuro-opthamogist, but I do experience blurred and double vision multiple times per week.

My pain has grown exponentially and is tolerant of a lot of medications. I can no longer tell when a headache/migraine ends or begins. Triptans do nothing. Some things that help a bit are Migranol Nasal spray, fioricet, celebrex, reglan, zofran and valium. These help for a few hours to lessen intensity and then the pain returns full force. I am careful to avoid MOH. My pain gets to a point that I have to take steroids to bring it down a notch or go the the ER for an infusion.

Recently I'm missing more work than I attend during the week.

Last year, I was on medical leave for all of this stuff. I tried like 50 meds, nerve blocks and trigger point injections every two weeks and botox every three months. I felt exceptional before returning to work (with the same company in a similar position.)

In training I felt like I had forgotten a lot of things I used to know, but was progressing with new material and making the appropriate decisions probably 90% of the time.

About 3-4 months in I started feeling confused and overwhelmed by the material and getting mixed up on my decisions. I am getting work sent back to me at least 50-70% of the time because it is incorrect. When I ask questions I am made to feel that I should have already know the answer and really don't get clarification. Sometimes I feel like I am being picked on because I'm not getting it but it might be an internal judgement. My memory and concentration is in the toilet, and I can see that they are working on getting rid of me due to this. Bursts of extra coaching for like a week, then nothing, encouraging me to ask any questions I need, then next time I ask a question I should use my best judgement. Emails documenting what we went over in a coaching session. I get it, I'm not doing as well as everyone else, and due to what I believe is this illness and chronic pain I feel the check boxes are being ticked so I can be let go.

I find bright lighting, overall pain, too much noise, heat and frustration tend to make me feel overwhelmed the most. I think it keeps me from being able to focus my attention fully on anything.

Concentration and memory don't work well at home either. I have to start every story with did I already tell you this? I have tried to talk to my husband about the decline and when it started, and he doesn't know. Then he told me we have this conversation every day. I really am clueless about it. I've packed my son the same lunch for days in a row with no variation like usual and had no idea when he told me. I get mixed up in the shower about what I've washed, shaved etc and find myself doing it again to be sure. I have a shower routine that I normally do in order, and I couldn't tell you why I veer from it...

I have had neurocognative testing done, that judges memory, attention, problem solving, language, visuospatial, processing speed motor, and emotion. Basically my score across the board was average.

I sure do wish there was a baseline, because I was always a driven, straight A student. I learned quickly at work and could be up and running within days to a week of training for what was expected to be a month long training session. I mourn that person. I wouldn't have believed an average score previously... now I'm going well that the middle lol.

So down to the real questions.

Do you find your memory or concentration lacks? Any tips other than alarms, calendar, sticky notes, etc?

Are you impacted on the job more than just attendance? What adjustments or accommodations have you or your workplace made to help you stay at work?

What are some signs you knew you weren't going to be able to stay at work or in the same job anymore? How did you feel when you first began to come to terms with it? How do you feel now after leaving or changing jobs?

What type of support have your received from your friends and family? What helped the most? Sometimes I feel so lost and helpless at 35 when people ask what I need and what they can do. Hearing your most appreciated support stories might help me to come to the right words.

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