u/Random10pm

As I'm writing this, I'm on Day 4 of this nightmare, which has yet to end or improve.

I've been on Topamax for 3 months since getting my first HM in May, and during that time my migraines were untouched by the medication. Additionally, I was having mild muscle spasms, normally during my sleep and migraines. When that I wasn't on Topamax, I had those spasms too, but it wasn't as bad as right now. Simply because I'm a teenager, and a very restless sleeper, I just never mentioned it to my family or neurologist, both of which I have come to regret.

The first time my neurologist upped my dose to 50mg, it interacted with another medication and triggered the side effects that everyone always mentions with Topamax, along with those spasms becoming more prevalent, as I was waking up sore and could no longer attest them to a vivid dream I was having. I was falling asleep in the middle of doing tasks, like showering or typing, with no relief from my migraines in the meantime. I adjusted the times I took the interacting medication myself, and continued taking the Topamax as usual, even though it wasn't doing anything. When I reported this to my neurologist, she decided that she was at a loss other than Gabapentin and Nurtec (which was in insurance hell but I have now received and has little effect), or upping my dose.

That call was three weeks ago, but I started the new dosage on Sunday. By the time Monday night came around, I knew something was wrong. From 12-3 AM on Tuesday morning/Monday night, I had: eye fluttering/rolling, upper body twitching, gasping, dizziness, jaw trembling, and nausea. Since then, my mom has caught at least 3 of them on camera, at the neurologist's request. But they happen multiple times everyday, including while I'm at my Summer Youth job, which is really awkward because I don't know how to explain it.

My mother was with me the entire time, I had woken her up before it started. The thing is, I'm awake while it's happening, I just can't move or do anything to make it stop. My mother called the neurology office, which didn't respond until the end of the next day to prescribe the aforementioned Gabapentin and a medication for the tremors, and a request to do an EEG. They've said it's most likely that it'll exit my system within the week, but that's because I forgot to mention the earlier history with the brain fog. I'm honestly a little worried, I don't want it to things worse considering they haven't gotten better yet.

Has this happened to anyone else?

I(16F) had my first HM the first two weeks of May, and I was hospitalized during finals prep so no one other than my close friends and my coaches realized I was gone. Historically, I have a pattern of getting sick/injured/hospitalized towards the end of the school year, but I tended to bounce back before the school year ended.

My neurologist, who I had already been seeing off and on because I'd got three concussions in 2 years, which have resulted in me having misophonia and potential TBI issues, just told me in my past appointment that she was running out of treatment options. She's only put me on topiramate, but due to other health issues there's a lot of medication she can't put me on, which doesn't help when all the medication she can offer me isn't strong enough or completely ineffective.

The only options left are gabapentin, which she's hesitant to give me because of other medicines I'm taking; and nerve blocker injections that are daily and or monthly. Because I'm a minor, Nurtec and other medications like it aren't approved through insurance, and even if they are the copays are ridiculous. Other than that, she's upping my dose again and if that doesn't work, she's sending me to a specialist, which honestly I would rather do before I go back to school and my migraines get worse.

Somehow, the hardest toll on me is mentally. I'm the youngest in my family, I'm entering my last two years of high school. I'm deeply involved in my high school, and I've already had to give up a lot this year being diagnosed with IBS-D and missing over two months of school off and on between that and my migraines.

Some of my teachers and administrators are understanding, but it's hard to see the opportunities that I, as a POC in a PWI through a scholarship, worked so hard for, slip through my fingers because of biology. Additionally, I get accommodations for testing when I come back from the hospital each time for a testing period, but as soon as that's over, the school takes that accommodation away as if the condition is temporary, and it's really frustrating because it's affecting my grades. Between my social, academic, and extracurricular life, I think the only thing that's keeping me going is that my friends have seen me at worse points.

Any advice on what I should do? Both with my neurologist and my school?

I (16F) have been diagnosed for a little over two months now, and it's been a little rough (obviously). My first migraine last for two weeks and I fainted during it, so needless to say my family's been taking some precautionary measures.

However, the migraines haven't really decreased in frequency and my aura keeps changing. At first, the symptoms were the same for me: left arm numbness, blurred vision, left sided weakness, headache, photophobia, etc. But when I got home from the ER, I was getting severe chest pain and slurred speech without an actual migraine.

Is this normal? Has this happened to anyone else?

I(16F) had my follow-up with an assistant endocrinologist yesterday, which wasn't my usual doctor, but they're working together. All of my levels (cholesterol, A1C, etc) were down from before, and my cycle has been coming off and on every few months.

Last month, I was diagnosed with Hemiplegic Migraines, which means I can't be on any other form of birth control with estrogen (there's more about this in another post I made), so they put me on progesterone every few months to induce a period to prevent the need for a D&C. Last October, I started presenting symptoms of IBS. I had always had these symptoms during my period, but it went on for months. In November, I had to get a colonoscopy and was finally diagnosed, but during all of this I had to stop taking the birth control, which meant that I wasn't having a period.

The other option that the endo brought up yesterday was Metformin, but they were hesitant to prescribe it to me because of the IBS issues I have and the potential side effects. Has anyone with IBS and PCOS had success with Metformin? What was it like?

For context, I (16F) had my first HM last month. Lasted for two weeks, and I fainted once during it in my school basement bathroom afterschool at sports practice but wasn't found. Somehow manged to power through it while juggling my playoffs season and finals prep, but around the 15th day of non-stop agony I had my mom come get me and the rest of the week was a blur for me. According to her, the migraine cocktail didn't work because it raised my BP to 160/110 and made the nurses think I was having a cardiac event in my sleep. I'm still waiting on a follow-up with the eye-doctor, because when they dilated my eyes they saw something the first time and not the second.

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Post-ER, I'm still having attacks like every 2-3 days (and this is since the neurologist has upped my topiramate dose), have had to temporarily take off from sports, and it has flared all of my other chronic conditions (all of which I've gotten diagnosed with within the past 3 years). However, even between the migraines, my left side, which is the side that my migraines are localized to for the most part, is significantly weak. Like it just gives out sometimes and I can't pick up a lot of things, including the dog I got for my birthday (2 months before this whole thing started), and I don't get a lot of help from those around me, which is understandable.

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The weakness started in my hand, which I thought was because they blew my vein at first, but even after doing strength training with that arm, nothing has changed. It's really frustrating, and I don't want this to ruin my high school years and all the connections I've built, or potentially the rest of my life.

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Has this happened to anyone else? Have you resolved it? Thanks in advance!