#but the meds that are supposed to stop the migraines and the seizures

[murasaki-sama]

Internet: caffeine can help relieve the symptoms of a migraine Me: Drink tea for pain. Understood

[masarukitkat]

🕯Shabbat Shalom~🕯

I know I haven’t posted much of anything yet and I do plan to change that very soon. Life has just been super busy and I haven’t had a chance to dedicate much time be able to actually write anything of substance here yet.

However, I’m laying bed, it’s Shabbat, and it was a long day. I was super busy, I made two loaves of matcha challah with pineapple jam in them, helped a friend from my shul with their hair, made dinner, did the laundry…it was a full day.

I’m also disabled. I have Hypermobile Ehlers Danlos Syndrome and Myalgic Encephalomyelitis which is also known as Chronic Fatigue Syndrome. I was also diagnosed with Fibromyalgia several years ago back. All of these cause some pretty intense chronic pain. And all of these tend to come with some not so great co-morbid conditions like Irritable Bowel Syndrome, Chronic Classic Migraines (with auras in my case), Ocular Migraines, Aphasia, Neuropathy, Postural Orthostatic Tachycardia Syndrome (POTS), Seizures…so many issues. I also have a Tic Disorder but I don’t think that’s related to any of the other conditions I have.

But basically, after such a long day…I’m finally laying down and the adrenaline of the stress from everything is wearing off. And my knees started twitching. And now they’re spasming and won’t stop.

And I have intense pain coursing through my legs starting from my hip, what feels like deep inside the bone, like the head of the femur, going all the way down into the tips of my toes and flying all the way back up into the head of my femur again.

It also feels like my face is twitching. A lot. Which could just be the normal side effects from my anti-migraine meds. Or, worst case scenario for me right now: it could be that I could be ticcing or I could be breaking through my meds and starting to have seizures again. Because yes: the meds I’m on are technically meant to prevent my migraines. But these meds are supposed to also prevent any further seizures. Which, so far, they’ve been doing a great job.

But when I start getting overwhelmed with…everything? I start to get really worried. Especially because only a week or so ago, I was stuck in the position of being so stressed out and anxious and upset that my brain bypassed my meds and my tics broke through my meds and I ended up with some intense physical tics throughout the whole day.

I’m really hoping that I don’t have a repeat of that day.

Anyway, TL;DR: I’m laying in bed after a long day with my chronic pain and it sucks and I would really like it to stop because my legs feel like they’re on fire and as if someone is trying to slice their way out of my legs with a really dull angry knife.

[angelicjadamv]

The story so far

One month after graduating high school in 2015 I was finally able to move away from my family. I was 18 and moved to California for college. Fortunately one of the scholarships I earned was accompanied by a summer program that started in the middle of the summer before fall semester. Shortly after settling in a safe, stable environment for the first time in my life I started to get better. A lot better at first. Then life happened, as it does, and 18 years of repressed trauma and abuse broke me. My nervous breakdown ruined my fall semester, I couldn't go to classes or take exams or function as a student anymore. Until this point, being an exceptional student was all I had and basically how I survived. My safe and stable environment now was dependant on maintaining a certain GPA, among other requirements I could no longer meet. I failed one of my main courses because I had a 0 on 2 exams, including the final. When I went home I was put on antipsychotics. Returning to campus for the 2016 spring semester, I attempted to seek more therapy. I wasn't successful in finding a good therapist (for me, therapy is a personal thing. Just because someone isn't a good therapist for me doesn't necessarily mean they are a bad therapist). I did continue to see my 2 psychiatrists (emergency and regular) often as they attempted to adjust my medication to find something that work. My agoraphobia worsened, I stopped sleeping, I could barely eat, I was manic one moment and dissociative the next, SH and suicidal ideation worsened. I was a burden to my friends and loved ones. I made it through this because I had a beautiful support system that I will forever be grateful for, but I ended up taking a leave of absence academically for my second semester, earning no credits and putting my scholarships at further jeopardy. I was allowed to stay on campus because it was clear I was dangerously unstable with no safe environment to return to and because I had incredible advocates looking out for me. I had realized that I wasn't going to get better in time to salvage my academic career and my life, and was mostly clueless as to how I would survive. I had had an internship in my field since I started college, but I earned basically no money. STEM internships aren't really made to be livable for undergrads, so I had mostly been working for experience in a field I would no longer be able to progress in. Bummer. My physical health had taken a huge dive for all of 2016. I basically always knew I was chronically ill, but I had been abused and gaslit my entire life to believe and act like I was fine, I was just a weak baby, I didn't know what real pain or suffering was, seizures were to be ignored, no I didn't have migraines or pinched nerves (um hello SCOLIOSIS), etc etc. And 2016 was the year my body finally started to break, so I knew "regular" jobs weren't going to be a viable option for me, at least not for long.

And thus I became a survival SW. I stayed in college for a final semester, because I didn't want to miss my friends, I loved my campus and didn't know where else to live, I still needed a lot of campus resources. I also kept my internship as long as I could, because I knew I would miss it for the rest of my life. I didn't really go to classes, again, because as much as a desperately wanted to and as much as my advisors moved heaven and earth to try to make it work for me, I couldn't handle it. I was finally able to find 2 great therapists who I started seeing regularly who actually knew how to diagnose and treat me, one at school and one outside. This is also when I met Daddy (Jace) online. After talking for what is probably a stupidly short time, we fell in love and started dating. This is honestly my first real relationship and time actually catching genuine feelings for someone, something that I hadn't thought I was capable of. Despite being happier than I had ever been in so many ways, my mental and physical health was still steadily declining. My migraines and pain were getting worse, I hadn't been able to eat normally in months and relied entirely on medication to eat or sleep at all. Many people recommended mmj at this point in my life, but I was afraid of how it would interact with my other meds. I only smoked occasionally at parties at this point (because no way was I spending my super duper limited money on weed). I wonder if medicating with something that actually worked well for me, like weed, would have allowed me to finish college. Oh well I guess. Because of my inability to attend classes, I had to take another leave for the fall semester 2016. I worked at a strip club briefly, but my health couldn't handle it for long.

I didn't want to go home for the first winter break in 2015, but campus closed and I had nowhere else to go. It was turbulent. When summer 2016 came, I still didn't go home despite having no place to stay. Until a month or so later, it was revealed to me a relative had terminal cancer. I had to go home again. It was worse than turbulent. When winter 2016 came, my relative was in much worse condition. They only had a few months left, and this was probably my last chance to say goodbye. This visit was by far the most traumatic, and more because of my parents than watching a loved one die. At least Jace was able to come meet me for the first time in person. He also got to meet my relative before they passed 🖤

Freshly fucked up by family, I retuned to California at the beginning of 2017. I was mostly taking a break from SW because of my health and was working vanilla jobs as I could (so not much). I had a pretty decent job that I was really good at and had been promoted, but then my relative passed. I started losing consciousness again ( I had many seizures and fainting spells in my childhood and during high school) and had to quit my job. the funeral was in spring 2017, I flew to Jersey to be with Daddy for a few days and then he drove me several states over for the memorial. That was the last time I saw my family. I wanted to transition to online/content creating, but I had no tech knowledge or equipment (even my phone was a potato). In high school I wasn't allowed to have a smartphone, most social media other than what was heavily monitored (and still had 0 experience with platforms sw is popular on besides Tumblr I guess), I didn't really know much about cameras. Way too sheltered and broken to feel like I could start anything. I was now seeing my outside, or I guess regular and only, therapist twice a week and doing treatments that while working for me were insanely (literally) hard. I had been able to get an apartment with roommates at a super discount in return for taking care of their crazy dog, which was a win win for me (he was a good boi just crazy from a bad past and had the worst separation anxiety). The agreement was that I would live with them until the lease was up in September, and then we would reevaluate the situation. Then they both got promoted at their mega corporation jobs. And after their wedding found a really gorgeous apartment in a much fancier part of the city, and paid to break our lease early in June leaving me homeless. I had been fired from my last 2 jobs (probably for being disabled because California is at will employment but who knows I might have been fired from the nanny job because the husband wanted to fuck me). I had no money or anywhere to go. All of my friends were almost as broke as me, so while I had offers to couchsurf at a few of their places they had other roommates who would have been pissed and in a few months they would be going back to school anyways. Daddy and I had been trying to save up to move in together for months, but he was going to move to California. We didn't have any money for that, so instead he asked me to move in with him in New Jersey. Leaving meant I lost my health insurance and my therapist. It was supposed to be much more temporary and we were supposed to move back to California much sooner than we were able to. I try not to be mad at those roommates because being angry doesn't change anything, but it really sucked.

Moving in with Daddy meant we could start our blog! And I was super happy at first, the happiest I could ever remember. But the years had been too hard and my health started to get worse than ever before. Without treatment and so traumatized, my brain and body were constantly at war. I would wake with splitting migraines, throwing up, my chronic pain became completely unmanageable. I started to need weed all the time because it was the only thing that stopped my cyclical vomiting episodes and kept me out of the hospital. My antipsychotics and other meds had been high-key fucking me up (probably shouldn't have been on them in the first place, thank you doctor who also ignored my seizures even when I had one in front of you) and were almost impossible to come off of because the withdrawals. (Seriously, kicking xanax was easier for me than my antipsychotics.) I'm not anti medication or anything, I just know the ones I was on were not good for me anymore. I'd actually like to be on something again, I just need a doctor who actually understands PTSD and DID.

My health continued to be shit for most of 2018, with several ER visits for severe dehydration from vomiting for days on end. We started to make videos and do snapchat and online sessions to be able to make ends meet. Despite being in the worst situation and thus everything being a trizillion times harder, we really loved (and still love 😇) doing SW and creating content. Our fans and clients have been there in some of our darkest moments, just being lovely or pulling through for us when we needed it most. During 2018 and 2019 I became actively suicidal for the first time since I was 13. I struggled with self harm again. I have gotten worse than I ever thought possible. But I wouldn't have made it at all if it wasn't for SW, this community and our supporters.

At the beginning of 2020 we were finally able to move back to California. Obviously, the pandemic severely disrupted many of our plans, especially regarding my recovery. Despite things being delayed or shifted, we are in a much better place currently. I have what I need to get better and I can build a support system again. I will get better.

Talking about things is hard for me. Being open and honest is hard for me. For 18 years I was trained and abused to not be sad or show negative feelings, or talk about upsetting things, and it has been killing me slowly my entire life. I genuinely don't want pity or to make others feel bad, but I do want to give you the chance to get to know me. I don't always talk about things so much. But I'm trying to get better at it.

[thelittleinjenthatcould]

Hi loves! My latest post is up #ontheblog Jen Finds Gems

New Post has been published on https://www.jenfindsgems.com/more-than-migraines/

Opening Up About my Health: More than Migraines

On October 11th the symptoms started. I went for a bike ride on a beautiful Sunday morning (feeling a little nauseous, but ready to power through it). It was pretty hot and I biked farther than usual so when I returned feeling more nauseous than before and a little “out of it”, I figured I was just dehydrated. I remember speaking to my sister and brother in law on the phone about an hour later and suddenly starting to feel a migraine come on. I figured if I just take it easy and drink some water with my usual migraine meds, it would pass quickly.

It didn’t.

On October 13th I visited my primary Doctor for my symptoms. My migraine was still present but I was feeling dizzy and nauseous. I knew something was wrong. I made the mistake of mentioning that I thought I had vertigo, and after doing a few manual tests (follow my finger, touch your nose, walk in a straight line, etc.) the Doctor said that’s what it sounds like so let’s treat it as vertigto. He preseribed me a anti-dizziness medication called Meclizine and told me that in order to recover and help with the dizziness, I should see a physical therapist.

What? A physical therapist? This won’t pass on it’s own? I have to see a physical therapist to help me walk “normal” again? How did this happen? How long am I going to feel this way? I had so many questions! I visited a physical therapist twice before I realized that there was a bigger problem that lied ahead. The therapist listened to my symptoms and concerns and ran a few tests on his own (the epley maneuver) and realized that this didn’t sound like vertigo at all. “I think we are dealing with something bigger here Jen,” he told me.

I kept that with me. Something bigger. Okay… but what? No one could give me answers.

I was a mess and everyday functions seemed difficult or damn near impossible. I couldn’t move too quickly. I couldn’t look around a room without getting pains. It had gotten to the point where just turning my head from one side to the other felt like the room was violently spinning and I was beginning to have double and blurred vision in my right eye. I couldn’t lay flat, sleep on my right side, or sleep in total darkness because that made the dizziness worse. I felt like I was free falling in the dark and of course that made me super nauseous.

Saturday morning I woke up ready to vomit and I almost fell to my feet. Walking was too difficult because I swayed from one side to the other and I had to run and grab a wall to hold. I fell to my knees and crawled to the bathroom, vomiting for hours. When my husband returned home (he went to drop the kids off at family’s house so he could take care of me) I was hugging the toilet, sweating and holding my head with my eyes closed. I didn’t know if I was having a stroke, a seizure, suffering from brain tumor, or an aneurysm. I was terrified.

That day Nick took me to the Emergency room. They drugged me up and ran countless tests from MRI’s, MRA’s, CT scans and heart evaluations. I was picked and prodded by nurses and Doctors and the on site Neurologist told me that my exams came back fine. He said there wasn’t any area of concern that he could find but he wanted me to follow up with ENT for a possible inner ear issue and then follow up with him for brain evaluations as this could have been linked to my migraines. He also prescribed a medication by the name of Topiramate which is an anti-seizure medication that is used to treat migraines.

After coming home from the hospital, covered in EKG tabs.

I have been suffering from migraines for over 20 years and they never presented themselves in this way. What was happening inside my body? Why now and why wasn’t anything showing up on the tests? I was confused and I was scared.

I was released from the hospital the next day, more confused and afraid than ever. I had no idea what was happening and what I was supposed to do from here. So this is it, I thought. This is how I’m going to feel forever.

As the days and weeks went on, I continued to do research, pray and research more. I made an appointment with an ENT Specialist that left me in tears because he said whether this is an inner ear issue or a migraine issue, it could take years to recover. Years? What the hell! I can barely walk without holding on to my husband or a wall, I can’t be in a bright room and too much noise or movement is over stimulation for me. Years?

That night I found two blogs that gave me relief- The Dizzy Cook and Jennifer of Migraine Strong. I read their stories and instantly felt closer to answers. They spoke about their experiences with vestibular migraines, dizziness and other symptoms, their road to recovery and their treatment plans. Every night I went back to their words. I studied their plans and their courses of action. I took notes of what they did and how it helped them. I looked up the books they recommended and the supplements they took and then… I found that Jen went to Dr. Danner in Tampa that specializes in migraines and neurology! He’s here in Tampa?! I HAVE TO SEE HIM!!

My first appointment with Dr. Danner was on November 4th. He listened to my concerns and helped me understand that what I was experiencing could have been an inner ear issue or be a migraine issue however regardless of which one it was, it would be treated in the same way. He encouraged me to follow a migraine elimination diet to help me find what my triggers are, start taking at least 500 mgs of a magnesium supplement everyday, keep taking my prevention medication, and follow up with him in a month.

I followed the elimination diet to a “T”. I fell in love with a book called “Heal Your Headache,” and I went down rabbit hole after rabbit hole of vestibular migraine research.

A few weeks went by my dizziness subsided but I started to notice that the migraine prevention medication that I was on was giving me adverse effects. I had crazy brain fog, to the point where I found it hard to hold conversations or keep a thought for longer than a few seconds. It made me crazy exhausted, depressed, and I lost about 20 lbs. It made my body feel cold (literally) and I felt frail and weak. The day before Thanksgiving I called Dr. Danner and asked if I should keep taking this medication or stop based on these symptoms and a numbness I started to feel in my right leg. After careful consideration, he recommended that I stop but continue the other migraine treatment plan and follow up with him at my next appointment (which was about a week and a half later).

When I had my follow up appointment, he asked me how I felt. By that time, the numbness in my right limbs had started to feel like a heaviness and my leg would sporadically “lock up”. My leg and arm would move (or not move) on their own and it started to worry me. Dr. Danner had his office staff call in an appointment for me with Dr. Sunil Reddy, an awesome Neurologist in Tampa that could take a deeper look to see if there were possibly any other neurological issues going on.

I have been going to my Neurologist and weekly physical therapy appointments since.

Today I experience less migraines and the spasms in my arms and legs are few and far between. These spasms are believed to be linked to Transverse Myelisits which is inflammation of the spinal cord. This was determined from a neck MRI that I had that showed some scarring on my spine. Sometimes Transverse Myelitis can progress to MS however sometimes it is a one time event that can heal on it’s own. After several brain MRI’s, my Neurologist does not see any lesions or scarring on my brain and does not see an area of concern there. My next order is to get an MRI of my spine and we will monitor and make an action plan based on the findings there.

I still have no idea what triggered all of this to occur and if they are linked in any way. Did my migraines progress into something more which caused these other symptoms and issues? Was something lying dormant and now decided to progress as I got older? How does your spinal cord even get inflammed? Is it something I did??

I’m still learning and I think that my greatest lesson is that I won’t always have the answers. But I know I’m not giving up, and all of this taught me that I’m more of a warrior than I realize!

I am writing this because I hope to help someone that may be going through something similar, just as Jen and “The Dizzy Cook” helped me. When all of this started to happen, all I could do was think of how much I wanted to write about my experiences for this reason. I wish that I could have given you a full synopsis of what I was experiencing in live time, but things progressed so quickly that I seldom had time to process them fully, or the energy or brain power to do so.

I’m sure I left out a lot of details. Like me crying every night wondering why this was happening. My husband having to physically hold me up to walk and take a shower because I was too dizzy to stand. The lack of confidence I had making eye contact with people, in fear that they would see my eyes darting from side to side or trying to focus. Wondering if people were whispering or thinking I was drunk when I stumbled to walk at my daughter’s Gymnastics class or my son’s Taekwondo class. Seeing more Doctor’s, nurses, emergency rooms and Specialists in the last 4 months that I have in the past 5 years. The time, money and MEDICAL BILLS I have racked up since this all started.

This journey has been humbling and frustrating, but I’m happy that I am stronger now than when I started.

I hope that this has helped you in some way and I look forward to sharing more of my journey with you here. If you haven’t already, please check out my blog post on my recommendations for dealing with migraines and follow me on IG for more health and wellness tips.

Stay encouraged and stay positive friends.

With love,

Jennifer.

[alixzin]

What would happen if Alex had a seizure?

Oh my god! Way to go for the hard angst!

 I’ve honestly never given it any thought before, but I suppose that with the anti-seizure medications (such as Topamax) Alex would be taking to reduce the frequency of his migraines that is a possibility if he were to abruptly stop taking it. Vanessa and Lin would be helicopter parents to the max in regards to making sure that Alex never misses a dose so I think something major would have to happen to lead to such an occurrence. Maybe, more recently on the timeline, during the blizzard they ran out of his meds but were snowed in and/or all the pharmacies were closed. Or Alex could just have a really bad stomach bug and isn’t able to keep anything down, including his normal pills. Add on the accompanying dehydration and fever and it would certainly increase the likelihood of such an event happening. 

As far as what would happen, obviously they would call 911 and Alex would be taken to the hospital, which he would be not at all happy about once he came to, especially since they’d want to run a bunch of tests and probably keep him for overnight observation. Lin, of course, would in a state of absolute hysterics over the whole thing.     

[sian22redux]

I am loopy as sh*t but not at this exact nanosecond in pain. Hallelujah. They brought out the big guns because one is not supposed to wind up crying semihysterically in the doctor’s office from trying to go cold turkey no pain meds for two weeks to stop the rebound pain but when a full blown seizure and major migraine hits keep bulling through.. Outside the acute embarrassment of not being my tough as nails self, having survived being handed kleenex after kleenex while i sobbed, we are now in emerg waiting to be admitted because my doc said enough is enough. Dt’s on top of the nightly seizures and 5 migrianes ia week? She gently suggested a bit of real support and supervision is in order. I think my husband cried too

@weirdlet. @andartha. @mollynoble @hunterandcossack Thank you all for helping me get through this weekend. You are the best

[your-own-medical-agency]

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