u/likeacherryfalling

My mom and my siblings all have it. Idk if my dad has migraine or just gets frequent headaches but they’re common on his side.

Mine and one of my siblings started around age 4 or so, and my other sibling’s started in his teens. Our presentations are all very different.

I’m the only one chronic. Mine are milder than brother 1’s, but I basically almost always have some degree of migraine activity- sometimes that’s an attack waxing and waning and others it’s some post-attack sensitization. I don’t throw up and am not sensitive to sound but I’m INSANELY sensitive to light. I get auras and weirder neurological symptoms, but the pain is usually pretty mild at this point. Brother 1 gets totally rocked during an attack. Severe pain, fevers, vomiting, etc. very very classic textbook migraine. He’s most sensitive to sound. Brother 2 is very infrequent and excedrin works fine. He’s bothered more by sound than light. Gets nauseous. I don’t talk to my mom so idk what hers are like. She was very sound sensitive as a kid but that’s all i remember.

Knowing it runs in the family isn’t really useful information clinically with where we’re at in migraine science. I think eventually it will be. Migraine is common, so just because both you and your mom have it doesn’t necessarily mean you necessarily inherited it from her but obviously it’s also likely you did. In my case, the fact that all 3 of my siblings have it is a pretty strong indication that there’s likely a shared genetic cause. Because we don’t know what that is, we can’t really use that to our advantage. Later on if we have data that says something like “certain inherited migraine genotypes are more responsive to a certain class of medication”, then knowing if it’s genetic could help inform decisions. We do believe that part of why we see so much heterogeneity in response to medications is probably because of heterogeneity in causes, and a huge goal in current migraine science is to try to parse these out to build “profiles” of sorts.

I like the bubly drops, they are clear and not sweetened

They give me an IV migraine cocktail of fluids, compazine, benadryl, and toradol. Depending on the doc they sometimes throw in Tylenol. When that doesn’t kill it they give me a steroid and IV magnesium as well.

I go if I can’t break a migraine after a couple days on my own. They always bring me back super fast.

I love nutritional science but man is the research a pain to comb through. I love when large corporations who obviously have no vested interest in the outcomes of studies sponsor nutritional research(/s).

This being said, I’m just gonna let bias win on this one because my great grandmother swore on her life that a cup of coffee a day was the key to life because she read it in a newspaper one time. She lived to be 96.

Wait til you hear what she had to say about chocolate. Nestle would love her.

It’s like, ridiculously common in a lot of genetic conditions to have an illness or other major health event sorta kickstart the symptoms. In some cases it’s a true like epigenetic trigger situation, in others it’s an immune/inflammation cascade, and in others it’s more of a lifestyle and biomechanical process that’s just exacerbating what was already there.

In terms of how covid could be a triggering event for all the joint stuff, I feel like there’s just a sorta bio-mechanical cascade that a lot of people who say this are experiencing. You get sick or are just quarantined for a while, you stop exercising, you lose muscle tone, your joints become less stable, you further avoid exercise because your joints aren’t stable, and you lose more muscle tone.

For someone without EDS this loss of muscle tone is fixed by a couple weeks in the gym once everything reopens, but for someone with EDS it begins to feel unsafe to train on painful or unstable joints.

The other thing that comes most to mind is POTS, which was also triggered by covid for a lot of non-EDSers. Someone who was really bendy throughout their life but hadn’t really paid much attention to symptoms, that now suddenly is having really dramatic pots-like symptoms is more likely to now go seek medical help. Or they might google POTS and discover EDS and realize they actually tick all the boxes.

Your approach to this looks a lot better, it’s cool to see improvements, so keep up the good work!

It might help you to start with a value scale reference (paint 9 equally spaced values ranging from white to black. First try it on your own, then find a printed/purchased reference to compare it to — if you own a color wheel or other reference you can substitute this exercise with how ever many values that provides). Use that reference to correct it if needed. The value (pun intended) of this is to try to get you to use your eyes more than your brain and get you to feel how the value scale progresses. (The first time I did this exercise i was really stunned by how it felt to mix certain values) Once you have a scale of values you can use that for some value-practice with your reference images.

Select a location, then try to mix that value. To start, you can use that value tool you just created: hold it up to the spot on your reference image to find the closest value. Now that you have that, it should be easier to mix. To make it more challenging, now try it without your value scale, and just use your eyes.

Paint your value study on a toned background— that’ll make seeing values easier. You’re mostly correctly identifying where shadows fall, but incorrectly rendering their value. E.g. notice how her lips are actually a similar value to the shadows around her eyes. The shadow around her nasiolabial fold on the right side of the campus is a similar value to the high points of the left cheek. Go through and find some more examples of this— places where the value seems counterintuitive to its placement in light/shadow.

Aka: you’re painting with your brain but need to work on painting with your eyes.

Not sure how relatable my experience is going to be to you, but I strongly suspect I had POTS as a teenager that has improved through adulthood (& better lifestyle management).

I’m prone to vasovagal syncope (usually it’s been from things like hard falls on pavement, stubbed toes, that sort of thing— mainly just sudden & unexpected pain events) but hadn’t ever had that experience with blood draws until I had a bad experience with one. I got stuck with an unskilled phlebotomist about 2-3 years ago that was enough to trigger a response. Literally, from then on, I started experiencing vasovagal syncope with every blood draw. I started going to a dedicated lab that has FANTASTIC phlebotomists, and I’m not every anxious about how they’re going to do, but I still get woozy or pass out. This reaction is starting to improve as I have more positive experiences with blood draws, so I guess the positive to my story is that I guess whatever the anxiety component is behind why I started having this reaction makes it possible for me to be deconditioning the response.

I can’t offer you any medical reason for why this might be happening, but I can tell you what has helped me deal with being a fainter.

1) tell them. I usually let my phlebotomist know that I’m a fainter. They usually will give me verbal reminders to breathe, and will make sure I have a place to rest my head if I get woozy. I no longer need it, but they’ve also offered to let me be laying down, which helped a ton. I love my local lab and if the people doing your bloodwork aren’t treating you with the patience and compassion you need to feel safe, see if it’s possible to pick the lab you go to.

2) start really hydrating the night before- talk to your dr about what is appropriate for the blood test before you do this though. I’ve found this makes me an easier stick (as I am historically an absolute nightmare) and the easier the draw, the better it goes for me. Same goes for things like keeping your arms nice and warm etc.

3) I bring electrolytes and snacks for after. They usually will give you juice if you ask for it but I like to have my own.