Macula disappeared after latest TBI. Anyone else experience this?

Unfortunately, I had another TBI 2.5 months ago. I had a retinal scan which revealed my macula had disappeared on the side of TBI impact. Light sensitivity leading to eye pain and migraine has spiked badly (strongest around that eye). Even though I have tried a variety of tinted glasses, none are enough to mitigate what happens essentially every time I leave the house to go anywhere (summer sunshine). Currently taking Amitryptiline, Emgality and Nurtec preventatives with Rizatryptin and/ or Diclofenac when migraine hits.

Has anyone else experienced this? What did you do to treat it? How long did it take to get better?

6
0
4d

Neurolens dramatically solved this problem for me. It’s expensive; but within a week or two, I realized I had a day without thinking about my head or the pain. Also, trying out theraspecs or avulux for over glasses with tints - if certain types of lights or screens are problematic.

A good therapist can help you. He took advantage to groom you to feel an impossible “decision” was yours to make and, therefore, to believe the shame of complicity is also yours. It’s simply not true. “Consent” in any form was not possible - which is why CSA is illegal. You were not in a position to make an informed decision with balanced knowledge and capacity to understand the full ramifications of what would happen. It was a criminal lie to exploit your vulnerability to abuse.

It’s not your fault nor your shame, no matter what the abuser groomed you to feel.

Thanks so much for your post. What are the costs for Altius contact lenses, and do you use them indoors or with screens (computer, TV, phone)?

Another TBI spiked photosensitivity: where to find more fashionable versions of super dark, fit over, “cataract” sunglasses?

After a recent TBI, my photosensitivity and migraines spiked. I had access to try a variety of fit over lenses including FL-41 (Theraspecs 3 levels of darkness), Avulux, and a friend’s post-cataract surgery “solar shield” sunglasses (appear to have a dark blue tint). Unexpectedly, the cheap cataract ones (maybe $25 max?) made the searing eye pain stop in just a few hours. However, they look like I just left the hospital.

The dilemma: where can I find similar super dark, polarized, fit over sunglasses that are a bit more fashionable? Does anyone know? Amazon offerings typically do not include VLT percentages (visual light transmission) - which would help to actually know how dark they are.

6
9
12d
Post-Cataract surgery glasses alternatives to help with acute photosensitivity?

My migraines spiked in light sensitivity after a recent TBI. I had access to try a variety of fit over lenses including FL-41 (Theraspecs 3 levels of darkness), Avulux, and a friend’s post-cataract surgery “solar shield” sunglasses (appear to have a dark blue tint). Unexpectedly, the cheap cataract ones ($25 max) made the searing eye pain stop in just a few hours. However, they look like I just left the hospital.

The dilemma: where can I find similar super dark, polarized, fit over glasses that are a bit more fashionable? Does anyone know? Amazon offerings typically do not include VLT percentages (visual light transmission).

I like how she checks her arm, pulls the sleeve back down, and then pushes her glasses back in place to get back to work like nothing happened. Focus.

For me, if my triggers remain the same, Neurolens with additional tint/ filters will be imperative (10/10). I don’t like how they look on me; but pain overrules vanity.

The reality is that it depends on your specific needs.

  • blue light glasses vary. Many claim blue blocking, but if they are clear of all color - the lenses aren’t blocking much.

  • the biggest impact for me was Neurolens - which has more to do with eye alignment reading up close than light.

  • iPhone XR doesn’t have flicker. I don’t know about more recent models.

  • for computer screens, “eye care” feature is a must (no flicker, adjustability for blue light, etc), Benq have been the best for me; while, Asus has been the best laptop for me. Pangobright has been the easiest and most impactful download for managing brightness - plus it works if you have multiple monitors.

  • FL-41 glasses are a good tint, but they weren’t enough for me. Most of my job is via computer screen. Therefore, your individual tint needs may vary. I’ve also had Avalux - which are a slightly less obvious color. (More like burnt sienna sunglasses than glaring orange.) Theraspecs now have a wider variety of different blockers and shades. Most proper vendors allow up to 60-90 days to try it out.

  • After another TBI, I found ~$25 solar shield glasses to be the most calming preventative and during a migraine. Yes, it’s the ones people are given for recovery after cataract surgery. They’re not necessarily fashionable, but the immediate pain reduction and use with a phone was significantly remarkable. (This is after trying every shortcut to adjust iPhone light and colors).

  • Replace light bulbs with smart LED 60 watt bulbs that can be brightness and color controlled via phone app (ex: Philips Wiz). The first time I set it to “cozy” was an immediate calming for my eyes. You will want something 2200k or less in brightness.

While living in SE Asia, a gardener would come every Thursday to tidy things up (by hand, nothing motorized). Birds loved that day, because weeding and yard work meant displaced bugs for dinner. A free roaming pet Myna bird raised by a local shop owner knew to come and would hang around those days to chatter, snack and visit.

No, homeschooling is not inherently bad; but, after experiencing it and seeing decades of other’s homeschool outcomes, the vast majority of those homeschooled long term (3+ years) have been negatively impacted - like 95%. Most have significant struggles due to exceedingly poor academics, poorly socialized, and/ or (potential) complex PTSD when it comes to authoritarian oversight, their parents’ world view, and prohibitions. It’s not what most parents think. The American form has been badly mixed with unaccountable ideals of “freedom” and “parental rights.”

Homeschooling should be highly regulated to ensure kids meet academic milestones, are socialized, and are not abused. Unschooling (no schooling) should be illegal.

Children are not property that parents can treat any way they think is right in their own eyes for 18-21+ years. “I am the parent” does not grant absolute and unaccountable power. Even God makes that clear. Abuse is immoral and illegal. Children have inherent human rights that should be protected.

How long before it took effect as a preventative?

Preventative Nurtec: how long to take full effect?

Due to a new flare in daily migraine, my neurologist suggested adding Nurtec as a preventative. I tried searching old posts but cannot find find much of anything for the title question. Days, weeks… longer???

Very similar. At times, I’ve been based in cultures for which estrangement is almost unimaginable; but due to distance from home, I could provide generic answers to satisfy questions.

How do you answer questions about your estranged family?

I’m NC with both of my divorced, abusive parents and with most of my siblings who still haven’t emerged from the mist. I find it awkward to answer the generic questions by mostly good intentioned people asking about my family - most of whom live within a 30 min drive. People generally believe all mothers and fathers love and want what’s best for their kids; and I don’t want to explain crap or have to detail justify why I’m NC. I also don’t do well if I think someone doubts what I’m saying. It’s triggering, and I’ll sometimes just shutdown.

Lately, if pushed, I’ve resorted to saying, “I haven’t seen my dad in 30 years; and my mom is not interested in having a (healthy) relationship.”

Then I switch topics. People are sometimes a bit jarred but usually don’t ask for more details.

Any alternative suggestions? What has worked for you?

Nepali Channa Masala = seasoned chick peas. Lots of versions online, so just pick what appeals to you. A meal in Nepal always involves some type of bean or lentil and rice. So, so good. Most everything starts with garlic and ginger paste. Indian recipes as well for nearly any lentil possible.

Cajun/ Creole recipes for red beans, white beans, and black eyed peas.

Taco soup with red beans, black beans, corn, etc.

Hummus.

It may vary based on your state/ province/ country; but, in some places, a person can enter or be placed in an emergency psychiatric hold for mental health stabilization (72hrs is typical). Where I live, someone can be picked up and involuntarily be placed under protective custody - sometimes placed in a behavioral unit. Although, of course, it’s best if it can be a voluntary choice. Is it possible to contact the doctor who prescribed his medication? They may have helpful guidance for what to do. All of you need to be safe with a best path for a healthy outcome. So sorry this is happening to your family.

I have a family member who experienced this more than once. They went voluntarily, b/c they understood something was wrong. It also was part of a document trail that ultimately led to disability classification (military vet). It’s a difficult path; and my heart goes out to you and your family. 💔🙏

Cauliflower dippin dots: an alternate opinionTips and Tricks

Tempted, I tried mixing Ghiradelli Majestic cocoa, peanut powder, Fage Greek 0% plain, truvia brown, a bit of almond milk to thin the mix, and frozen riced cauliflower. Everything tasted good until the cauliflower; but there’s an obvious reason. When I normally eat ice cream (aka, Ninja Creami concoctions), I eat slowly, using a baby spoon to best savor the delectable volume.

The problem with the cauliflower dipping dots happens when it stays in my mouth past the first 1-2 crunches that start to release the cauliflower flavor. There is no way to savor each bite, because melting releases the truth. To finish the bowl, it was crunch and swallow before cauliflower flavor could breach to the forefront. I don’t think I’ll do it again; because, for me, there are better ways to enjoy the ingredients.

Actually first, I did go in for only the simplest version possible with the frequent info/ requests for upgrades, etc; but then I began to understand why more support would be helpful in my situation. I do understand how it could be annoying.

I’ve used TurboTax for several years with the upgrades due to the complexity of my circumstances and easy access to a humans by chat or phone. If I try to call the IRS, it takes quite awhile (hours to days) to reach a human with the knowledge and capacity to answer questions or actually resolve an issue. At peak times with TurboTax (April 15th), I’ve only had to wait max 5 min to chat/ speak with a human. This has also been the case for answering problematic letters from the IRS. I’m not a CPA, lawyer or tax expert; nor am I always in the USA to call, sort automated transfer options and wait on hold extensively during normal hours. So access to expert review and live customer service is worth it to me.

Is that available with the free file service?

I understand if filing is simple; but this year, expert review and a chat after completion saved me several hundred dollars - which was significantly more than the upgraded cost of TurboTax service.