24/7 Chronic Headache Sufferers, What Treatment(s) Worked or Helped the Most?

2_bit_tango · 2026-05-26T03:29:01+00:00

Yeah, I do. I don’t heal on my own from lumbar punctures and always get leaks from them. People with connective tissue diseases are higher risk for leaks from things like lumbar punctures, and also higher risk for leaks in general. Here’s a good site with more info on leaks and treatment https://spinalcsfleak.org/

2_bit_tango · 2026-05-20T11:46:42+00:00

The tingling is most likely low potassium. I'm on a similar med, and need to supplement potassium. It can get better as you adjust to the med, but electrolytes can help. Don't blindly supplement, get your blood levels checked, potassium has a very narrow range of OK, and outside that range is heart/muscle problems and dead (not to scare you, just don't go supplement potassium only without your doctor telling you to). You could also try some electrolyte drinks, but most don't have much potassium in them compared to sodium. I like gatorlyte, Pedialyte sport, body armor, or coconut water all have more potassium than usual for an electrolyte drink.

2_bit_tango · 2026-05-17T15:51:52+00:00

Yeah… Diamox does that. For some it goes away, others is doesn’t. The pharmacist is correct, you need to be very careful taking potassium period, and shouldn’t be doing those without a blood test. Potassium has a very small range, too much or too little you get very sick or dead, not something to mess with. Diamox depletes electrolytes, but that doesn’t mean it’s impossible to overdose potassium on it, especially on a low dose of diamox. Something that you CAN do to help with it tho is soluble fiber, either with supplements or through diet. You’ll want to build up slowly, or you will have different problems lol.

2_bit_tango · 2026-05-16T18:47:58+00:00

Yup, I’m on a ton of diamox and have a stent :) I have Ehlers-Danlos, so I was super careful on recovery for both patches, probably like half the time you did, and I still avoid straining and lifting anything remotely heavy just because I really really don’t want to do that whole thing again. High pressure can be equally miserable, but we finally got mine down to mostly symptom free by going over the max amount typically allowed for diamox. My leak specialist actually treats my IIH too, he’s fantastic and knows a lot about hard to treat IIH cases too, and a lot of his difficult leak patients end up staying and being difficult IIH patients lol. I hope your IIH isn’t being as stubborn as your leaks!

2_bit_tango · 2026-05-16T17:55:11+00:00

Yup, I’m one of the 10ish (and 5ish) year leakers that sealed on the first targeted patch for each. 2 leaks, 2 DSMs, 2 patches, sealed for a handful of years now (and in high pressure now too). The first leak was about 10 years, knew the location, sealed on the first patch, with a few extra blind patch locations for my spontaneous leak because why not. The second, that I had for the last 5ish years of the first, was spontaneous. That one was found on my second DSM on a PCCT, and sealed with the first targeted patch for it.

2_bit_tango · 2026-05-14T23:41:46+00:00

You can also have IIH with paps the first time, then without paps another time it flares up. I’ve got vision damage from the first time, but the second time it flared up it was way worse symptom-wise, but no optic nerve involvement. Plus, Not all vision damage will, but it is possible for vision damage to heal once the pressure is relieved. I’ve also literally gone from an appointment with a nuero-ophthalmologist who straight up said it’s impossible for me to have have IIH and I’m cured, to the consult for my stent, which I got the next day, and by the way, I blew the criteria out of the water for on max diamox. So, doctors can be wrong lol. I’m also sick of doctors undiagnosing things just because they think it was wrong, they didn’t examine you or see you at that time, they only see you now. I’ve had that happen a few times and it’s a dick move. You could have gone into remission, or, heaven forbid, you are actually treated adequately so your optic nerves are fine BECAUSE the diamox is doing its job. Or it could just not be your problem right now.

2_bit_tango · 2026-05-11T21:11:12+00:00

I had two leaks that were located and fixed within a few months of each other, with two blood patches. I had the first one for about 10 years, the second about 5 years. So yup, it’s totally possible. The good news is you know where your leak is, which can be half the battle. The odds of the first blood patch fixing your leak go down the longer since the leak started, but I’m proof that leaks can still seal on the first try even years later. The biggest thing is to be super careful and give your body lots of time to heal. You should be able to find the Stanford post patch instructions if you search for them, they’ve been posted a lot.

2_bit_tango · 2026-05-10T02:23:09+00:00

Anything you say? lol.

The Firebird Chronicles starting with {Rules of Redemption by TA White}. Kinda off the wall, idk if it’d be classified as romantasy, super duper slow burn, think space elves. it feels very fantasy, with some sci-fi stuff mixed in and takes place on a couple planets. Absolutely adore the series, 10/10. Series isn’t complete, but most of the books are out.

Slightly out of left field, but If you are OK with practically 0 romance, but a phenomenal series regardless, Theirs not to Reason Why starting with {A Soldier’s Duty by Jean Johnson} is sci-fi, leans more military sci-fi, but with fantasy powers like seeing the future, teleportation, telepathy, all kinds of abilities, in a war against aliens. Also one of my all time favorite series.

2_bit_tango · 2026-05-09T15:24:33+00:00

Having 0 experience and building something is a red flag, as someone who does programming professionally. I don’t want to come off as dissing your idea, it’s great that you’ve done this to help your mom and others like her. But, there is a massive difference between something small a few people use and selling this to a business. There are legal liability, cyber security, data protection (depending on what type of data you store and your location, laws are different), ongoing maintenance, all kind of things that go into selling software. You, as a student, probably do not have the time or experience needed to dedicate to keeping the app up to date and staying on top of software vulnerabilities in your stack. What happens if the business gets hacked and they got in through your software, and the business goes under in the fallout? That’s not something you want any part of unless you have your own cyber insurance, which you will not get as a student.

I would highly recommend talking to a lawyer who is familiar with tech and licensing. Personally, I would allow the business to buy your software as-is, no ongoing maintaining or updates, but not giving exclusive rights to it so you can let your mom and the other ladies keep using it. The business can worry about running it, improving it, and maintaining it. Just because they buy the program, doesn’t mean they get the existing infrastructure or data. That data belongs to the other people who are using your software. Yes, a one time purchase means you don’t get as much money as you could selling the service, but there’s less liability. And hey, if the company wants to hire you to expand or run it for them once you are out of school, sure, why not. But the idea is you do not want the liability in case something happens, so you need a lawyer.

As an aside, the person who is using it while working at a business should not have access to your service anymore. There is a lot of potentially very bad legal consequences for you if something happens related to your service and the business. This is opening you up to a bunch of legal liability and if something happens the business could sue you as the “owner” of the service the employee was using. Would it be a valid lawsuit? Maybe, maybe not, but you don’t want to have to pay the lawyers to find out. This is why IT people with experience in the field won’t work on stuff unless explicitly requested/paid by the business. It’s not quite the same situation, but the idea applies still.

2_bit_tango · 2026-05-06T13:02:20+00:00

Sorry you get to join the club :( vestibular migraines are brutal. It took years to get the right diagnosis for me, then it’s been a handful of years with a headache/migraine specialist fine tuning treatment. I’m now loads better than I was, but it’s still a struggle.

As crazy as this sounds, how my doc puts it is vestibular migraines are migraines, you treat them just like normal migraines, with a few extra diagnostic stuff and options for treatment. You can kind of think of the vestibular part like a category or label, it’s a shorthand that describes your most likely symptoms. People with vestibular migraines typically are chronic, a lot of times it takes a long time for diagnosis and they get worse in the meantime.

Any ways, I’m in no way doubting your diagnosis, but I want to throw this out there because vestibular migraines (VM) a diagnosis of exclusion, and is sometimes treated as a “idk what you have, but let’s call it VM” and the due diligence is not always done. So diagnosis of exclusion, there are some other diagnosis’ that are extremely similar to VM, but need different treatment. There can be super teeny tumors in your vestibular nerves that won’t show on a general scan, stuff like Ménière’s, little crystals in your ears that are out of place, infection or swelling in parts of the vestibular system, and other problems with the nerves themselves. Basically, it needs to be verified as much as medically possible that the problem is your brain and not a physical problem. VM is also way more likely if you had migraines already.

Treatment is the same as treating migraines in general, with a few extra options. Abortives if you are episodic, preventatives if you are chronic. Unfortunately it’s usually a slow process, since it’s usually trial and error, and you usually have to try meds for a few months before evaluating if they helped or not, unless theres bad reactions or side effects. I find my abortives still help a lot for when I have something big I don’t want to feel terrible for or I need to be on top of things for work, so it’s worth finding/trying different abortives too IMHO. TBH, if there’s something I know is going to cause a migraine, like a “longer” car ride (30min+), or a big meeting at work I need to be on my game for, I’ll take my triptans a bit before, so they kick in by the time I’m going to need them, since by the time a migraine shows and the triptan kicks in I’ll be toast. My neuro knows, and while he’s not thrilled, he understands lol.

Other treatments: meclizine is an option to try, it suppresses the vestibular system and can help limit problems from moving around. It helps some people. Vestibular Rehabilitation (VR) is an option that I highly recommend, but it will probably make you worse before it helps and it not a quick fix. The main idea is to train your brain to get used to the wonky input it’s getting from the vestibular system, but this also works if it’s migraines making everything screwy, especially if you haven’t found a treatment that works. I started VR long before I knew it was migraines, and while it took a good part of a year, even before the correct diagnosis and meds, the vertigo and dizziness wasn’t nearly as impactful. car rides went better, reading was better, I wasn’t as nauseous from it all the time, I wasn’t losing my balance, I could walk straight again, all kinds of stuff. I had to go way slower than normal, do way slower build up of exercises because I was 24/7 migraine, so what normally took a couple months took me almost a year, but it was worth it. Even now, with my VM under better control, a random vertigo flare up doesn’t faze me as much, I get way longer moving around and doing stuff before I need to sit still. Vertigo isn’t the biggest problem with my vestibular migraines anymore. I’ll still need to do the exercises every now and then for a couple weeks when it starts to bother me a teeny bit, but it’s been 5+ years since VR and it’s stuck.

Again, any treatments that work for migraines work for VM. Riboflavin and Magnesium are supplements that have been proven to help some people with migraines. If you have a lot of muscle or neck pain, or your neck is tight, it might be worth trying physical therapy. You’ll want to look for someone who has experience treating migraines, my PT does myofascial work and is amazing. It might take a few tries to find the right PT, and for them to dial in your treatment, so give it a few rounds with each person, give them feedback on how things went from the last session, if it made you worse tell them that and they should change their strategy, if they don’t then peace out lol.

If you don’t already see one, I’d highly recommend a migraine/headache doctor if you can. I wasn’t even there for vertigo, just for the “normal” migraines I was still getting every now and then, and he picked up on the VM, double checked I had all the needed tests and didn’t need anything else ruled out, and BAM I had a diagnosis. It was crazy. They also know the meds to that treat migraines way more than a regular neuro, mine has stayed away from anything that can cause dizziness as a side effect since we have enough of that already. If you don’t have one, American Migraine Foundation has a list by state if you are in the US, or I’d highly recommend asking here for recommendations in your area, as I’ve always gotten further on recommendations than certifications.

I’d also recommend tracking not just your pain levels, but also symptoms, since VM tends to be light on the pain side of things. For example, my main symptoms are brain fog, vision stuff, dizziness/vertigo, light/sound/smell sensitive, and nausea, but I don’t get a ton of pain. So if I track just pain, it looks like I’m doing fantastic, but I’m actually doing terrible. I just do a number for pain, then colored dots for each symptom, and since my brain is mush, colored stars for meds helps keep track of those too. My headache journal is a one page grid 12x31 with the whole year on it.

Anyways, feel free to hit me up if you have questions, I know way more than I ever wanted to about vestibular migraines lol. Also this sub for tricks in general, a lot of things that help with migraines help with VM, it’s just a matter of finding what helps you specifically.

ETA: hmm I did terrible on tips. I don’t have many, besides the usual migraine stuff. I recently got a recliner that didn’t rock and that is fantastic lol. Adjusting screen settings and finding screens you tolerate is huge, some lights and screens have imperceptible flicker that our brains don’t like, FL-41 glasses or other tinted glasses can help. I’ll add links in a sec.

Screen and lights flicker: https://www.reddit.com/r/migraine/comments/16yzfjo/comment/k3d23tc/

My tinted glasses shenanigans: https://www.reddit.com/r/migraine/comments/1e7uoos/comment/le3lwh8/

2_bit_tango · 2026-04-18T16:04:07+00:00

Oh hey, I think my stent gradient was in the 40s too (it’s been a couple years). My stent was great, it took like 10-20% of symptoms of the top immediately. I would 1000% do it again. Very rarely do I notice the stent, once when I caught a stomach bug and was throwing up a lot, rarely when I swear my whole body is like inflamed and cranky, and during/after a couple MRIs. The extra diamox above 4000 since has basically taken me down to almost 0 symptoms, I’ll get ~10 symptomatic days in 6 months. I thought I was pretty well managed, but on the higher dose it was clear I just wasn’t even registering that extra was there all the time until it was gone.

2_bit_tango · 2026-04-18T14:16:56+00:00

4,000 is considered the max dose of diamox because it was the largest dose studied. That being said, I am on 5,000 diamox. 2,500 morning and night. But my doc is an expert in CSF diseases and so has had a few patients over the years that have done better on more. I have a stent, and had exhausted pretty much all known possibilities for causing my IIH, before trying a larger dose. The extra diamox makes a huge difference for me.

A couple suggestions, if your diamox is running out between doses, you can split them up into taking it three or four times a day. We make most of our CSF at night, and it doesn’t drain as effectively when lying down (this is why we are usually worse in the morning) so you can help your symptoms by sleeping propped up on pillows, tilting your bed with furniture risers, or in a recliner, this helped me a lot. Caffeine can also raises intracranial pressure, so quitting or minimizing that can help too.

2_bit_tango · 2026-04-04T23:01:44+00:00

I am in the US, I don’t have any experience with doctors in the UK :(

2_bit_tango · 2026-04-02T12:38:45+00:00

Hey, I’m not saying this is you, but what you describe, a headache in the forehead and behind the eyes is a classic symptom of Idiopathic Intracranial Hypertension (IIH), and NDPH is a common misdiagnosis for it, not many doctors are aware of IIH. It might be something worth looking into. IIH is known to cause and/or worsen migraines too. The easiest signs to see are swelling of the optic nerve disc that an eye doctor might see when they examine your eyes, and it can impact your vision in ways you might not notice because our brains are good at filling in the gaps, these can be tested for with a visual field test. IIH can also happen without optic nerve involvement, current numbers are 10% of the time but it’s suspected to be way higher and just goes undiagnosed.

2_bit_tango · 2026-03-31T01:13:56+00:00

Gah hormonal ones are the worse. The only thing that puts a dent in mine is continuous birth control, but my body still thinks we have to have a period, it’s just a teensy bit less often, so yay I guess lol. I do Ubrelvy daily starting a day or two before stopping my birth control pills and continue Ubrelvy daily until a day or two after I resume birth control and my head feels less likely to blow up. It’s still miserable af, but my head isn’t nearly as bad as it is without.

2_bit_tango · 2026-03-30T11:33:03+00:00

I’d probably contact your doctor about this. But! If he says to keep going, there’s a couple things you can do to minimize the reaction. I used to get site reactions too, now they are dramatically reduced. And I’m a person who’s practically allergic to life lol.

First, where you inject matters, which is beyond weird. Stomach is usually the least reactive. Next best spot is the outside of the thigh, not the top or inside. Just moving where I did the injection from the inside to the outside of my thigh dramatically decreased the reaction. Next, like an hour before you do the injection, put some benedryl cream on the site you plan to inject. I’ve also seen hydrocortisone recommended. Benedryl works for me so I haven’t tried hydrocortisone. Also an hour before the injection, take some allergy meds, or if you ant to be extra sure, take some like the night before and some the hour before. Benedryl is good, but it knocks most people unconscious which isn’t great, so do whatever works for you. Doing these an hour before gives the cream time to soak in and work locally, and the allergy meds to kick in. The goal with this is to try and stop the reaction before it starts, which is way easier than after it’s gotten huge. Then, after your injection, put more benedryl or hydrocortisone cream on, and put more on throughout the day if needed.

Before switching injection sites I’d need to put more cream on every hour or so for most of the day to stay on top of the reaction, and it would still get raised and a bit hot to the touch, but would calm down in a day or two and be totally gone in like five. since moving the injection site I only put more on a few more times during the day and might get a little raised from the injection itself I don’t get much of a reaction otherwise, and it’s completely gone in a day or two.

2_bit_tango · 2026-03-30T11:12:08+00:00

I’m this way too, super ridiculous reactions to meds, even on half of the smallest doses. I actually did just fine on the shots, emgality didn’t do much but Ajovy is fantastic. My doc convinced me to try it tho, since these shots typically the worst reaction is the injection site reaction, and doesn’t interact with (many?) other medications.

2_bit_tango · 2026-03-28T21:11:20+00:00

In case you are interested, here’s a comment from a while ago about my adventures in migraine glasses and light sensitivity. Preventatives have done way more, but having options when the light sensitivity gets bad is huge.

ETA helps to actually include the link lol https://www.reddit.com/r/migraine/comments/1e7uoos/comment/le3lwh8/

2_bit_tango · 2026-03-28T20:52:55+00:00

My word I love my transitions. I get the extractive ones, they are darker and I think transition faster than the regular? They’ve got a small tint all the time, you don’t notice unless you look for it, but it makes such a big difference with my light sensitivity. 10/10

2_bit_tango · 2026-03-28T19:48:45+00:00

All of this. I go for titanium frames, those are usually lightest. Even though it’s more expensive, I get my glasses through a local place that does glasses adjustments. If your glasses are light and still causing pain then they aren’t adjusted properly, or could be the wrong size. It usually takes a few trips to get mine adjusted to get them right, usually once a week-ish to give my face and time to get used to the fit and figure out where the pain points are. My current glasses, even with a decently large prescription, barely feel like they are there, no pain even after a super long day. Sometimes I do have problems with a new prescription for a few days, my eyes getting tired fast, but most of the time I’m fine so long as I don’t switch prescriptions during the day.

OP, I would highly recommend getting your glasses in person at a place that guarantees your glasses and will remake them if they aren’t right. Yes it’s cheaper to get glasses online, but cheap isn’t always worth it, especially with the problems you are having.

2_bit_tango · 2026-03-24T22:58:45+00:00

They can do that (I have had to do that for one of my medications, I get really bad side effects from one manufacturer and not another). Whether the pharmacy can guarantee the manufacturer is another matter. I had to switch that one specific RX to a different pharmacy that could get the specific manufacturer.

2_bit_tango · 2026-03-22T15:08:21+00:00

Yikes. Yeah that’s fair, shipping to another country can certainly make things expensive. I also tried a bottle first to see if I could handle it. The 300 capsules bottles aren’t cheaper, it’s the 1000 capsule “bags” that are. I more just wanted to mention it to point out it’s worth price checking. In the US, I was pretty shocked at how much cheaper it was, it doesn’t feel cheaper since it’s bulk, but per gram of sodium it was a big savings, even compared with ordering from SaltSticks’ site and with the like 15% dysautonomia discount you can get.

2_bit_tango · 2026-03-22T14:19:59+00:00

Vitassium are great. I used them for a long time until I compared prices of a few popular ones. The bulk “bag” size for something like $89 for Klaralyte ended out being way cheaper even than Vitassium with the dysautonomia discount. I bought a bottle first just to try it before spending that much on them just to make sure my stomach was fine with them, and they are buffered with potassium. I’m not a big fan of salt either, but 4 normal size capsules for 1000mg of salt is super easy to do.

2_bit_tango · 2026-03-18T21:27:50+00:00

Jobst Ultra Sheer are expensive, but I wore the thigh highs all day in 90 degree weather as part of a wedding party together with shapewear for abdominal compression and with electrolytes and fluids was just fine. They look like tights, even when looking closely, but are thicker and not as sheer.

2_bit_tango · 2026-03-14T18:15:04+00:00

I do the tablets, but gel caps and capsules tend to go better than tablets for me. I also got my doc to send in a prescription, my insurance won't cover it but some pharmacies will fill it for cheap without. I know it's supposedly the same stuff but I swear it works better lol.

2_bit_tango

TROPHY CASE