IIH lost focus, memory and concentration

Posted , 15 users are following.


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.

2 likes, 16 replies

16 Replies

  • Posted

    I get confused often and forget things. What is odd it's more short term memory loss or confusion. I almost daily put deodorant on 2-3 because I can't remember if I did. Heat or being in the direct sun seems to make me feel worse. I haven't been back to work yet but hope to soon this is a new diagnosis as of June 12th

  • Posted


    I'm 18 years old and was recently diagnosed with IIH. While the doctors are fairly confident this is what I have, I have experienced some of the same things as you. Before getting medicine to help treat my excruciating headaches, I had trouble focusing on schoolwork and paying attention in class. I'm 6 in my graduating class so this raised a lot of questions for me. During the month of May when the search for a diagnosis began, I was missing school left and right. I went a total of 7 days. Some other things I've experienced are blurry vision, headaches, loss of smell, eye pain, slight loss of memory, and slight speech impairments. When I had a lumbar puncture, my CSF opening pressure was 37cc so very high. The nuero-ophthalmologist I am seeing at Emory University hospital put me on 500mg of Acetazolamide twice a day and it really helps. If you haven't tried it, I highly suggest you do.

    Hope this helps some!

  • Posted


    I'm 41 yrs old and was diagnosed with IIH March 2016. I had a VP shunt fitted 21st April 2016 and a revision of the shunt 30th April 2016 after the catheter end twisted up and the whole thing broke down I had to have it all replaced. After having the shunt operation I went back to work 19th July 2016.

    I work in an office and help to manage over 150 employees. I went back to work too soon but thought I was ok. Before getting sick I worked 46 hours a week. By October 2016 I'd had a further 2 weeks off sick due to IIH. It takes time to adjust to having a shunt inside you. I was very tired all the time. I still had periods of confusion, short term memory issues, speech problems connected to not being able to think of the right word to say and stuttering/fumbling verbally, concentration issues at work on the PC...

    By January 2017 I had been successful in my PIP claim and they recognise IIH as a disability. I had a sit down with my boss and I talked about IIH as a disability and the struggle every day to try my very best to concentrate on what I'm doing and to take my pain relief and balance tablets at the right times to make sure it doesn't affect me. My boss was very understanding, between us we agreed a temporary reduction in hours and an extra day off midweek, and a reduced simplified workload. This was to be reviewed on a monthly basis to see how I'm doing, if I need less or more hours, more responsibility etc. I felt instantly like a weight had been taken off me. My hours were reduced to 25 a week over Mon, Tue,Thurs and Fri. I've improved no end, I have a book too that I write things down in just in case I forget them, but the less stress I was put under helped with everything else, concentration improved, memory has improved.

    I was a workaholic previously, officially my hours were 46 per week but I would work above and beyond that, taking calls late at night from staff with issues or sites with emergency call outs, also doing work on my days off, I'd multitask till the cows come home. I wore that many hats at work, did the job of many people. Since I went sick with IIH my boss has employed 4 more office staff, my workload has been shared out. I still have lots that I can be getting on with, but there's no pressure. That is key, no pressure, reduce stress, you will see the difference, it does help.

    I don't recognise myself anymore though. When you said you mourn for the person you were, I totally understand. I miss myself. IIH is debilitating. It changes who you are. I catch myself staring into space sometimes, or I can be watching tv and not have a clue what I've just watched. I used to love reading books, but I don't even bother anymore because I've tried and can't get passed sentences, I end up re-reading the same paragraph and it's so frustrating.

    I would recommend talking to your boss and see about lowering your workload if that's a possibility where you work? Make sure you're drinking plenty of water and taking your meds. I get through about 2ltrs of water a day at work and about another 1-1.5litres when I get home. Even though I've got a VP shunt I still have to take acetazolamide 250mgs twice daily and 50mgs topiramate twice daily, plus 30 msg codeine and 2x500mgs paracetamol 1-4 times a day.

    The only thing that keeps me going right now is the hope that the bariatric surgery im on the last leg of waiting list for will help the condition. The neurosurgeon I'm under believes weight loss is key to reducing the symptoms so much that it may almost cure it. I'm currently weighing in at 20stone and 5'4" so well overweight. My neurosurgeon made a consultant to consultant reccomendation for me to be accepted for bariatric surgery on medical grounds and I was accepted. I've been with bariatric for over a year on waiting list and ticking boxes. Hopefully not long now, I opted for a gastric bypass because if it works I want it to have a permanent affect on my head and not temporary.

    Anyhow, I'm sorry if I've gone on for too long, my family get sick of talking about IIH, but for me it's something I live every day. I know I'll probably have a bad night tonight because I can't sleep on my right side of my head since the shunt operation, I've got nerve damage from the incision and it's painful. I hope you find your way at work and the problems settle down

    • Posted

      Hi! I am not yet confirmed to have this but an MRI suggested this diagnosis and I have a lot of symptoms. I am also overweight. I wondered if you had bariatric surgery and if your symptoms improved?

  • Posted

    Hi Ginny, following this post! I have recently been diagnosed with intracranial hypertension & Papilledema and am not sure exactly what this means. While googling my symptoms I came across your post. I have almost began to become accustomed to the headaches, blurry vision and ringing in my ears. However, recently I cannot remember a task within seconds of its conception. I am easily confused and have terrible issues with short term memory. I often feel as if I am intoxicated, especially when driving early in the morning. Does anyone else feel this? I was just diagnosed, my follow up with neuro isn't until Nov. 6th so I have not had any treatment yet but I fear the medication as I had a terrible reaction to Topamax earlier this year.

    • Posted

      YES!!! Keppra has been helping me with some of these issues. Have never tried Topamax. Ask your doctor about that and acetazolamide. You may want to look it up. Many, even when an IIH diagnosis isn't certain have seen improvements within weeks. I've been doing a lot of research.

  • Posted

    OMG! My life is just as you described as well. Due to the debilitating nature of the pseudotumor cerebri or iih, I too, have changed and am not the same person I used to be. This is my story:


    In April 2010, I was driving to work and could not see the lines while driving on the highway as the lines were going every direction except straight.  I became so afraid as I had to manage to shift my gears (manual shifting) and see at the same time.  I closed one eye and could see perfectly fine but using both eyes the cars appeared like a kaleidoscope. I arrived at work and with each minute, my eyes became more blurry and achy.  The work I used to do required me to facilitate meetings, type minutes and meet deadlines.  When I setup the computer to start my day, the words were all over the screen except left to right.  I then burst into tears.  I tried really hard to think if it were something I did to myself.  I remembered taking Flonase the night before and read the side effects, blurry vision as being one of them.  Needless to say, I had to leave work and go home.  While at home, I began drinking lots and lots of water to flush the Flonase (or so I thought) out of my system.  The next day, my vision was even more blurry and doubled than the day before along with the pain behind my eyes.  I happen to look in the bathroom mirror and realized my eyes were not moving as they should, more specifically, my right eye would not move at all.  I went to the emergency room that night and the ER doctor said I had sixth nerve palsy and needed to go to the neurologist right away.  My visit with the neurologist comprised of a MRI which ruled out MS, diabetes, lupus, etc. and a brain tumor.  The neurologist then referred me to a neuro-ophthalmologist and she diagnosed me as having a false brain tumor or iih.  I had to have 2 spinal taps, (a year apart) to relieve the pressure from my brain.  Ultimately, the pressure was relieved but the debilitating migraines, tinnitus, tingling feeling in my hands and feet, joint pain, sensitivity to light and sound especially fluorescent lights, neck/shoulder stiffness, etc. were not relieved.  My vision did not return for several months and the migraines never stopped.  I went back to work with 80% of my vision but knew right away I and things were different.  Things were no longer easy from my processing of skills to my ability to express myself.  I was more forgetful and just could not recognize myself anymore.  I stayed in denial that this now was my new normal.  My major complaint to my doctor was the migraines because they caused so much pain.  She prescribed only certain medications and if those did not work, that was just too bad.  Diamox and Relpax were my go-to meds at that time.  While those meds were helpful, I stayed in pain and tears 26-27 days a month.  While at work, I had to use a 25 watt bulb in my private office as to shield myself from the fluorescent lights that greeted me every day upon entering the building.  Needless to say, the lights were a trigger for the migraines.  In December 2014, I had to call it quits.  The demands of the job along with the daily pain made it difficult to continue on.  Luckily, I was vested and could retire based on having a disability.  

    My husband grew up with migraines and often compares his experience, not understanding that all migraines do not operate the same in my opinion.  I did not grow up having migraines but have them now after the pressure elevated in my brain damaging the nerves.  I can no longer process information, I overthink things, short term memory has diminished greatly, depth perception and visuospatial affected, problem solving, attention span etc. and more have all been impacted.

    I am not happy about your circumstances but I am happy to know you and other people understand what I too am going through.  Life is so challenging and no one can fathom just how hard we try to appear normal and the strides we make on a daily basis to just get up every morning and not give up.

    This has been a really lonely experience.

    I wish you well and I am here if you want my opinion about something you're going through. 

    • Posted

      Ask for Keppra. It has helped me tremendously with mental acuity and overcoming brain fog. I also consume one rockstar, two cups of coffee and 2000 mg of taurine along with ala/alc and magnesium daily. I am able to function successfully at a normal pace at school. It's hard to get motivated, however, to focus in because my sharpness and memory is still not what it was. I modify the way I take in new information. I use quizlets, timers, mini google home and other techniques to remember things and take the load off of my short term memory so that it is freed up for other things I must remember. I also make sure I share important information I cannot afford to forget with family members and email symptoms to my doctor I might forget to share when we come together. Life is harder to manage, but I will not surrender to this disease.

    • Posted

      I'm sorry. I should have said, "ask about keppra." Not trying to prescribe or diagnose. It might not be right for you. You and your doctor would need to decide that.

  • Posted

    Hi, Ginny. 

    Thanks so much for sharing with us. This whole thing is new to me and I'm learning more about it as time goes on. I've been diagnosed with pseudo tumor cerebri with IIH being suspected. I don't always have headaches, but I have a whole host of other symptoms I just don't feel like going into. I so appreciate your sharing your experience, because I have the same problem. I used to be so sharp and I could feel when my mind was not as sharp as it used to be.

    Two years ago, it began to feel like my body was turning on me. My body began to attack me in a pattern, which no doctor could seem to understand (or believe at first). This winter, it was discovered I had papilledema and the process went in a new direction. My first neurologist gave me this diagnosis along with his expert opinion that I was too fat and under too much stress. He gave me an antidepressant (with a history of causing and exaserbating IIH) and told me to check back in two weeks. He ignored the mrv that said I had congenital narrowing of my transverse sinus and the danger to my vision and sent me home (telling me I could always get a second opinion.) My short term memory and brain fog causes me to forget my symptoms and doubt past experiences with pain becasue they no longer feel real. I left feeling ashamed and crazy. My husband was with me and was very encouraging. I did, however, get a second opinion.

    Now, they are working to make sure my vision is preserved. My new neurologist totally understood my symptoms and relayed the pattern of symptoms to me, prescribed keppra for the brain fog (which is working) and scheduled a lp (which was only 10 cm H2o opening and closing). However, the greatest thing he gave me was hope. 

    Nothing has been settled and new symptoms and issues emerge and others die down. I just want my life back. I'm so used to headaches and head pain and a strange feeling like something is happening in the veins in my head that I only pay attention to the debilitating pain. BTW, spelling now atrocious and must constantly use spell check for words I never struggled with. You're not alone and by hearing your symptoms, I can see I'm not alone, either.

    I would like to recommend those with symptoms beyond typical neurological issue contact an endocrinologist that specializes in pituitary issues. I believe it is the ignored component in IIH, as many have empty sella and a myriad of symptoms beyond headaches. It's worth a look. I am going to suggest this to my neurologist on my next visit, but I will look into it regardless of his opinion. My mother has two pituitary tumors and I'm just wondering if there is a link. If anyone else is already doing this, I'd love to hear from you.

  • Posted

    Good morning all! Just saw responses to this post and wanted to send an update and hopefully get some answers from fellow ptc diagnosesees. I was diagnosed with pseudotumor cerebri officially, swollen optic nerves being the only physician component for diagnosis as all mris came back normal, I even had a normal opening pressure during my lp of 15. In November I was put on acetazolamide and slowly tirated up to 2500 which recently I discovered was making me worse, not better. I could barely form a thought and was overcome with anxiety. I have recently gone down to 1000mg (500bid) and while some of the debilitating headpain and dizziness has subsided, it still lingers daily, but my worst symptom is my vision, I have extreme pressure and pain in my eyes when looking up or with too much visual stimulation. I can’t even go grocery shopping and am pretty much confined to the house, as you all probably know, this doesn’t help my esteem much.. daily life as I know is ceases to exist. I finally see the neuro opthomologist next week. Has anyone seen full recovery with the medication alone? Thank you all and my prayers are with each of you! 
    • Posted

      Hi Brooke,  have you experiencd any balance or coordination issues? I’m trying to still figure this all out?
  • Posted

    Sorry to hear you are having these issues...I don’t feel so alone right now. I’m going through the same things. Has yours improved? It’s awful, my family sees the changes, but it’s like the drs don’t want to address my problem. They act as if it’s made up...hope to hear from you! 
  • Edited

    I may have IIH or I may not I have constant pressure in my head for many months that never goes away. I have memory problems difficulty thinking and speaking, and overwhelming brain fog. I am experiencing fatigue, I have tinnunitis, as well as pressure in my eyes. I have more symptoms in addition to this. I have had imaging and I am not sure what is going on. However, after looking at Caring Medical florida, it seems like maybe there is something being pinched in my upper neck or some place else due to some type of cervical instability. I am seeing a chiropractor and I am using a cervical traction machine at the chiropractors office. This seems to be helping and is possibly promoting the drainage of the CSF. This is just an idea you can try as my symptoms seem to be getting better. I went from not being able to leave the couch or go for a walk to now slowly exercising. I hope this helps.

    I will pray for you,


  • Posted

    I'm Angela and I have IIH and migraines. I was diagnosed about a year ago. I have been feeling just in the last couple months like my memory ( short term) is not good. That's not normal for me and it'ss scaring me. I was wondering if anybody else with IIH was feeling the same way. After I read your post, I cried. At times I feel like I'm " loosing my mind!" Forgetting important things that I never would have missed or over looked before whatever is going on in my head.

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