L
laur5446

  • 16 May
  • Joined Jun 22, 2019
  • Hello. I have a bizarre update since December when I last posted.

    As I mentioned, trying to find help gives me so much anxiety that I just try to manage my symptoms emotionally on my own so I have not sought anymore help and haven't returned to the neurologist after discontinuing Depakote & Propranolol.

    This all seems unrelated but I went to the dermatologist and started oral Minoxidil (1.25mg) for hair loss in January 2023. Around March 11th (ish), I noticed my eyes hurting less. Today, this is still consistent…my eyes definitely still hurt and are strained from electronic use BUT it's noticeably less. On a bad day, my eye strain could be a 8 or 9 out of 10. Lately, it's been more like a 3 or 4!

    NOTHING ELSE HAS CHANGED other than starting the oral minoxidil. So…it's either a fluke or it's the medication. Minoxidil is a vasodilator that used to be used as an antihypertensive that is used in low doses to help hair growth. I don't know how or why a vasodilator would help.

    Again, I still have pain but it's less and I am grateful for that. Whatever the cause--medication or fluke--I will take it. It makes me nervous though that if/when the pain comes back to it's normal levels, it will be hard to handle emotionally.

    This correlation seems weird but I thought I would put it on here since it's the only thing that has changed for me.

    Edit: I want to add that, as usual, if I sleep poorly, the lack of sleep will still makes my eyes hurt worse during the day. But still less than before the medication (or fluke).

    • mazury Hello! Things are about the same for me. I took a break from seeking treatment/help as I have other things going on (travel/unrelated surgery/etc). The latest updates are that the neurologist had put me on Depakote in Feb 2022. I took 1000mg for 3 months…it made my hair fall out and did not help my eyes so I quit taking it. He then put me on 60mg Propranolol ER in late June 2022. I only took it for a month before quitting--I'd ideally liked to have given it 3 months but I was worried about weight gain so I quit taking it. I have been preparing for an unrelated surgery so I have not been back to the neurologist to discuss other medication trial options. It seems pointless but I thought I should try everything I can, right?

      I am not sure what I will do next…maybe seek the other type of vision therapy I didn't do…but I was told I no longer have convergence insufficiency by the last doctor who sold me their vision therapy. Maybe I will find a research based neuro-ophthalmologist. In the meantime, I just do the best I can every day to deal with this awful condition.

      Re: the feeling of misalignment…I don't usually experience that unless I actively try to see double. Very interesting you were diagnosed with sinusitis! I think they would have seen that in my MRIs if I had that (I hope so, at least). I hate that the surgery did not resolve your eye symptoms. 🙁

      I relate to your despair. It's so stressful. I think it's worth trying the vision therapy--I may do it in the future, as well (apparently there is more than one type and I only did one). Even if it doesn't help, I will be able to say I tried. It's worth trying everything we can. I have noticed that while we all have similar symptoms, we also all have difference in symptoms…some people have found relief in things that haven't helped me when I tried them. So maybe the therapy will help you. You won't know unless you try.

      Also, for me, the more I obsess over finding a solution, the more anxiety and distress I experience. I have to limit my time on this site for that reason. I will update my post again as soon as I try something new! 🙂 I would love to hear how vision therapy is for you if you try it.

    • Just an update for those interested. I can't really take Adderall because of the side effects and my doctor in my new city doesn't want to prescribe it. She referred me to a neurologist and I had two EEGs. One normal EEG and the other I did while looking at screens that hurt my eyes. Both results were normal. Luckily, the neurologist does believe me but admits to not knowing what the problem could be. He said he'd like to attack the problem as if it were a migraine issue just to see if migraine medications work.

      I have been taking Depakote since February 8, 2022…I quickly worked up to 1000mg starting on February 14th and have been on this dose since. There are times where I feel like maybe it is helping but times where my eyes hurt just as much as usual. So I do have the occasional better day but I am not sure if it's due to the medication or not. I was on vacation in another country and the pain was less but I think it was because I was so busy and distracted and not using screens much. I have zero side effects from the Depakote but I don't think it's worth continuing to take if it doesn't alleviate my symptoms. I guess the true test will be if I come off of it and my eyes hurt 10x worse! I have a follow up appointment with the neurologist next week and will discuss next steps and will likely try a new medication.

      I now live in an area full of research hospitals and am considering making an appointment with a research based neuro-ophthalmologist or neurologist…expectations would be low but might as well try. And I might look around for vision therapists. Everything just costs so much.

      Long story short, still looking for help. 🙁

      I will post again when I have another worthwhile update.

      • Angetastic I did "orthoptic therapy" where the sole devise was prism lenses. It did not help at all in resolving my pain symptoms. 🙁

        • xelaos I guess you have tried covering one eye for some sometime?

          I have tried this in the past and it did not help. I am now working from home and can do this without embarrassment so I did it again after reading this in November. I did it for 3-4 days and it did not help. 🙁

          plymn10 Neurolens had a money back guarantee, so I bit the bullet. First couple days I was slightly nauseated because I've never worn glasses before. Day 3 and on it's been heaven.

          Really?! I had looked into Neurolens a year ago or so but couldn't find anyone on here who had tried it. I tried a prism patch a while back with no success but I might be willing to give these a shot. I wear glasses all waking hours so I would not even take them off except to shower or go to bed. The orthoptic therapy I did didn't help but there is another kind I would consider trying. I just get SO exhausted seeking help without success but since I moved to a larger area, there could be more options to try. Also, everything is so expensive.

          As a general update, I saw a neurologist last month and he said (as expected) he did not know what my problem could be but suggested an EEG and a trial of an anti-seizure or anti-migraine medication. Since these are things I have not tried, I am willing to do so. I did the EEG and (as expected) it came back normal. Good, I guess, but also frustrating as it perpetuates the fact that this illness is such a mystery. I have an appointment with him next week to start an anti-seizure drug (probably Lamotrigine). I will report back the results after I give it a fair amount of time.

          If the meds he suggests do not help (and I anticipate that they won't), I may look into Neurolens again and the other type of vision therapy. If those don't help, I will just continue to try to learn to live with this horrible illness.

          • ryans Hi, I am wondering if you've made any progress?

            Hello. Sadly, I have not. I don't peruse this site as much anymore because it stresses me out to see how everyone is always in pain and little progress is achieved. The pandemic put a hold on seeking further treatment; the city where I was living had a neurologist shortage and then with the pandemic, no one would see me. I moved over half a year ago to a bigger city and will see a neurologist next month but I have low expectations and highly doubt I will get any answers.

            Of note, I had a doctor in my old city agree to prescribe me Adderall to see if it would help. I had reason to believe it might cause some temporary relief. Because one of the side effects is anxiety and sweating (for me), I have only tried it 3 times and have not yet determined if my eyes hurt worse once it wears off or not…but it does appear to help to some degree for 2-3 hours. But if it causes worse rebound pain it won't be worth it. All I want to take it for is to watch a movie once a month or something…I will probably try this again soon and can report back. I will also report back after seeing the neurologist but I anticipate I won't have much to say. 🙁

            Like most people here, I continue to have a lot of pain. Nothing helps thus far but lifestyle modifications and staying away from screens as much as possible…and then it feels isolating. I wish I had something more positive to report! Thanks for checking in. I will update the thread again soon.

            • bkdo Hi! I am OP of this post. I've given up for now on help. While I love this forum and have received comfort in knowing others share this problem, it also adds a lot of anxiety and stress knowing so few people have made long term progress. I might pick up seeking help again when I move to a bigger city. My eyes still hurt horribly daily but the more time I spend stressing about finding a solution, the worse my mental health gets.

              I tried to stay away from electronics (outside of the required computer use at work) completely but it's so isolating. I find myself straining my eyes on my phone just to stay connected with people. I gave up TV and movies. I read paper books for leisure.

              I've tried a few more things since my last post to no avail. I will log on sometime in the future and log my additional attempts at obtaining relief.

              I agree this is super depressing. It's made a profound impact on my life in a negative way, as it has for most of us here. But the more I dwell in my anxiety, the more miserable I feel. Like you, I also worry about my future. While it still hurts terribly, I have to actively work to distract myself from THINKING so much about how it's ruined my life in order to stay more positive.

              • Seagull I appreciate this thread a lot... I've been planning on trying this myself but hadn't heard of lions mane.

              • martin I do have the glasses and brock string. I just get frustrated with it because it's hard to know if I am doing it all correctly.

              • martin I'd be interested in progress reports--how are you measuring progress? By pain symptoms?

                And yeah, I keep starting the exercises and giving up. I have greatly appreciated your patience and assistance but I think I need some in-person guidance because I worry I don't do them correctly. I am still toying with the idea of going to an in-person clinic for the vision therapy but it costs so much money. Additionally, I have been told by the last doctor that my CI is gone. If a couple of professionals tell me I have it and a couple tell me I don't, I am at a loss at who to trust. So I am still definitely considering paying for a few in-person sessions but I am tempted to wait until I move (which could be 6 months to a year from now) just because I have lost faith in the health care professionals in my state.

                • This is interesting. I have never seen these but I don't think they would be a feasible solution. Have you tried them again?

                  ensete This was pretty crazy to read, it almost exactly mirrors my path over the past 15+ years.

                  I appreciate hearing your experience and reading about all you've gone through to try to find a solution/cure. It definitely makes me feel pretty hopeless but confirms my thoughts that I will just have to come to terms with adjusting my life around this problem. The one thing that will always be a nightmare is work...I can avoid screens at home but I can't at work. And I can't find a home setup that works for me but don't have the money to continuously switch out electronics. Why does your neuro say it's likely you could age out of this condition? It would sure be amazing to just wake up one day and things would be back to the way they used to be. Can I ask what states you saw specialists in? I hope to move to the northeast in the near future and hoped doctors may be more helpful up there but overall, I think I will just continue to meet brick wall after brick wall like you have. Although, I think you have done a good job narrowing down possible causes--there is just no help available. I actually have never had any serious sinus issues.

                  ensete You learn after a while that despite all the "oohs" and "ahhs" around modern day medicine, it is extremely focused on the most common ailments people have, As soon as you stray off the beaten track into somehting more exotic, you very quickly reach the limits of medical science and are left in the cold.

                  Yeah...I am learning this quickly. 🙁

                  Update below
                  I have tried some more strains of medical marijuana that have not helped. I tried kratom (legal) and it did not seem to help. I think I will just give up with medical help until I move (later this year or early next year) but I will continue to update periodically if anything changes.

                  • I know not everyone is keen on seeking medical treatment here, but I thought I would add an update to my (lack of) progress.

                    I have been taking Gabapentin for a couple of months now. It does nothing to help my eyes but it seems to have had a positive effect on my anxiety (although it's possible my lack of anxiety has been due to being stuck at home with nothing to do during quarantine--I have been furloughed and have been able to take a break from computers).

                    I had the neuro-ophthalmologist send a referral to the Mayo Clinic. Sadly, and weirdly, they called me and said their neurology, ophthalmology, and pain specialists all felt they could not help me. It's possible the referral was written poorly, but I thought it was very sad that this very highly regarded medical facility declined to try to help me.

                    My primary doctor has not found a neurologist for me to see and states I have to wait until this COVID situation has died down.

                    I still want to see a neurologist but I guess I have to wait...my next steps are to email some researchers and possibly see a vision therapist like Martin has seen--although I have been told I don't have CI anymore. I might try Neurolenses but I have a feeling they won't help.

                    I have a new laptop that hurts and my phone still hurts--I tend to choose to ignore this problem when I can because endlessly trying to find solutions is so stressful, costly, and makes me feel hopeless.

                    Anyway, if anything else worth noting arises in my search for solutions, I will add another update.

                    • @si_edgey Thanks! I will check this site out if I keep the laptop.

                      @JTL I think I will probably end up keeping it. I restored my old Dell to factory settings and reinstalled Windows 7. Things won't work now--the USB ports won't function, the track pad isn't working properly, and f.lux won't work, either. It's not letting me download drivers, etc. I don't know what happened but I am about to toss this thing out the window. It still hurts my eyes to some degree so I guess I will just have to accept that I will be hard pressed to find anything that doesn't hurt my eyes.

                    • si_edgey The version on my old laptop (6.1) bothers my eyes but mildly. The new laptop has version 1909.

                      I only have a 7 more days before I can return this new laptop. Where do you download old versions of Windows?

                      • degen I don't know. My 2011 laptop has an older version of Windows. This new laptop has Windows 10 and my work desk top is Windows 10... Both hurt. You've probably posted it somewhere but what laptop set up have you found works?

                        • I just bought a new Asus Vivobook and it hurts my eyes quite a bit. I am currently using my 2011 Dell XPS and I only have mild symptoms in comparison. This thing is going on 10 years old and is pretty slow. What can I do to prolong its life and make it faster? Wipe it and re-install the software?

                          If I buy another 10 year old laptop, it's just going to have the same issues and honestly I trust mine to be in better condition than anything I can find on eBay.

                          Any suggestions?

                          • AGI I reached a point that even 2 weeks off work do not allow me to recover fully.

                            That is horrible. I am sorry to hear that. I listened to that podcast someone posted not too long ago about a lady with a serious light sensitivity. It is crazy that this technology (lighting and computers) are supposed to be better but they are actually making people sick.

                            AGI I promised myself to shoot emails to authors of scientific articles on the subject but I am so behind with my work and my life because of this problem, that I hardly find time to get the minimum done.

                            There are several studies being done on the trigeminal nerve and the study information includes email addresses (probably not the scientist's email but maybe an assistant) and I considered doing the same. I don't think I have trigeminal neuralgia as I described in the original post but maybe one of them would be interested in the effects of tech on the trigeminal nerve or any other part of the brain...wishful thinking, possibly. I think I will send emails, though, when I can work up the courage to be on the computer willingly for hours doing so. If you have any saved articles, you could send them to me and I could send the authors whatever email I draft up. I worry I won't be able to articulate the tech aspect of all of this very well but I could probably pull enough info from this forum to come up with something that makes sense. But still...so much computer time. I really do relate. I am extremely fortunate to have a boss that tries to find things for me to do outside of the office but the majority of my work is done on the computer. My productivity has declined significantly and I worry about finding a new job in the future. And, like most of us, my personal life has suffered, too. I feel depressed and anxious a lot...I believe you have been dealing with this longer than I have (next month marks one year). Let me know if I can help with the email part because I don't want to give up yet.

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