#hemipeligic

[bookandyarndragon]

@spiritspodcast

This! So much this! I'm a migranure and I've very much encountered supernatural stuff, eg hearing a banshee, ghosts in the home my bf grew up in, a lot of mystic stuff in church. I've also been in so much pain that I halucinated Matt Ryan's rendition of John Constantine in my living room. I heard the voices of my dead relatives encouraging me to hang in there when I was in the ER with a hemipeligic migraine so bad we thought it was a stroke. I was also seeing nurses in a dark room with my eyes covered.

Was I triping balls on pure pain, yes. Did I have have a supernatural experience, quite possibly. Won't know for sure until I cross the veil. I very much needed to be in the hospital in either case.

I'm saying this from a place of genuine care: if you are seeing ghosts or shadows or having nightmares... and sageing, eggshells, Crystal's, and psychics arent cutting it..

Please.. please... check for things like gas leaks, water damage, vermin. I'm not saying your house isnt haunted, I'm just saying that carbon monoxide poisoning looks a LOT like being haunted.

[espeneldritch]

2. This is the post with abuse mentions I was talking about please stay safe

Alright so first off so nobody gets confused: yes. I'm ftm. I don't list that on my bio because I just want to be male you know? Being trans isn't as big to my identity as being bisexual and it's not like I would probably date anyone off Tumblr anyways so it's really none of anyone's business unless it comes to stories like this, in which, you need that context.

If you don't know what that means, it means I'm trans and yeah I still go by he/him. I'm male.

Anyways here's the story

I have waited a little over 2 years to be seen by my local gender specialist. This is not optional in Canada no matter your money, and he was booked up that far because the old one retired and I live in a fairly densely populated area. I was very excited when I received the phone call and was solely focused on the gender aspect of my mental health because I've been living as male since 17 and not being on T while seeing trans peers in other areas get to medically transition faster felt like torture. I had completely forgotten that these gender specialists are trained psychiatrists prepared especially for the issues we can face.

I came in, gave him my med list, told him about my transition, he agreed on my disagnosis of gender dysphoria and referred me to an endocrinologist within the first five minutes. He even apologized for the wait and said he would refer me for top surgery, but he needed to wait for fat redistribution on T.

Here is where things got interesting. He had us booked for a full hour like a therapy session. It really caught me off guard how he started going through questions off the beaten path for therapists.

He asked me about previous disagnosis and we went into detail about how they interacted with my dysphoria and suddenly something old came out of his files. My letter from my childhood doctor for concerta. He asked about how my ADHD was off medication. Nobody I'd seen since I was 6 had asked about my ADHD, and there was a good reason for that.

I was absolutely shocked. It all came flooding back. No, my mom had taken me out of the doctor's because she said it changed my attitude too much and she wanted me back. I was bilingual, mandrin immersion when I was little. On the meds, I was finally catching up with my tutors a year in but my mom took me off them and my attention crashed so hard that I had to be removed from my multilingual program and put into special Ed to recover the damage done. I had to switch schools, she didn't try different meds she just took me off them. I figured out how to make my understimulated brain work with special Ed and was thrown back into regular schooling by grade four. Chances of learning any other languages pretty much completely ruined even with learning strategies.

But it didn't stop there. I was ill allot as a kid and my Mom wasn't experienced enough to handle it. I don't think it was malicious, she's just always been my only parent and... not really ready for a kid. I was severely iron deficient throughout my childhood which may or may not have been her fault but between the both of us being victims of actual abuse and living in shelters for a few years I'm not willing to call the trauma she put me through abuse.

Yet, when I developed chronic migraines in Jr high (a risk factor for migraines is chronic iron deficiency) she refused to treat me after one bad medication interaction along with refusing recommend MRIs due to budding working symptoms. She stopped taking me to doctors, I lost contact with my neurologist. As always she had that same inexperienced fear of repetition instead of a willingness to be on my side to help me. As a result of that my migraines were out of control up into highschool. I was missing weeks of school a month because I couldn't talk without slurring and they would stack up and trigger each other.

Mysteriously, they stopped in grade 11-12. But they came back when I was 18 (I graduated at 17 and was working for half a year at this point) but this time with hemipeligic symptoms. But, because of my neglect growing up, I had no idea that a) people didn't just deal with half their body getting paralyzed or b) what to do about it as an adult who has never been taught how to take care of my mental or physical illnesses. I refused to tell my coworkers what was wrong. I valued my privacy, and if I had had the supports behind me, this would have been fine. But I didn't. I had love behind me, but no supports.

I suppose what this is. I see everyone bonding over abuse, including me. I've talked about my abuse tons of times and that's not for the public eyes but I want to know if you all can relate to having so much love behind you from so many different people. So many people from different places that you have healthy relationships from, but you know, none of them behind you are resilient. It hurts you, but it's not their fault. My mom is so important to me. She's a good person, a strong person. We get along as adults. But our roles feel kind of flipped and it's not abuse but it's not healthy either. I don't know how much people really talk about that kind of dirty laundry, but there's a certain kind of burden that comes with this structure. I'm the eldest son. I live in and pay her rent even though I want to move out because she wants to keep the house and I want to make sure my little brother is never alone like me. She's always crying on me. She brings home her boyfriends to me, asks for advice. I break up arguments between her and her long time boyfriend all the time. From before I was in school I was helping at her work and I continue today, despite that being one of the places I was abused.

She never seemed abusive to me because she's always seemed naïve. She just didn't know better. Yet, there's research coming out that they're finding white matter scarring on MRIs of people with hemipeligic migraines. I can't blame her, but her mistakes might have left physical scars on me.

I could have brain damage because she was scared of me getting locked in with a migraine medication again. I was afraid too, but I was a child, I needed her to be strong more than I needed to be strong. I needed her to continue looking for treatment, but she didn't, because she had love for me. She was just there for me, but not to fight for me when I was sick and too young to understand. She was just an inexperienced mother who saw her kid suffering and wanted to hide because of it. Unfortunately I just happened to hurt so much more because of it and I didn't even want to think about all that before my gender therapist asked.

Today, I am 4 months HM free on preventative medication despite bad side effects and ages of dosage adjustment. It's still not perfect, but compared to what I had, it's incredible. I just tried a different of ADHD medication and even some gaps in my vision I thought were permanently ruined due to my migraines were fixed. I'm going to do some research on this tonight, but I'm overjoyed. My vision problems are nothing glasses could fix, I didn't think my ADHD could effect my vision, but I think it might make sense especially with my migraines at the same time and also depression. But that's another post and just my thoughts as a dumber than average non-neuroscientist

TL;DR

Going in for gender therapy is actually not just gender focused. Sometimes you can be surprised with big honking problems you forgot you had. You'll probably walk out of that room with a referral, just prepare yourself for all the other things you were barring behind your gender. Because, I didn't believe them when they said there's always something; but there's always something. Don't be afraid, just be ready. You might bite off more than you can chew like I did, but take it slow. The prescription for ADHD meds at the gender clinic has probably been both the strangest and the best thing that's ever happened to me.

[faetheway]

For years I begged for something to be actually wrong with me. Doctors, family and “friends” all dismissed my symptoms, called me attention seeking, lazy, or spoiled. I needed to know something wasn’t right because I was starting to believe them. This is why diagnosis is important.

[phasesintime]

Delay, focusing on my health

[thedisc0panda]

Pastel sketching WIP Time for a #raredisease update aka what the hell is going on with my nervous system! ...It’s not great. TW: videos may be disturbing/not be appropriate for all viewers If you remember back in August I had a reaction to the anesthesia given during a procedure that caused a “Dystonic storm” the first video (Swipe) is 3 hours after the original storming and is greatly improved from the original, the second video is 2-3 weeks later. Dystonic storms are rare and usually only occur in people who already have generalized Dystonia, I do not (I had focal and now have segmental) as for why that happened? No one really knows. The Dystonia genetic panel ruled out all the REALLY bad things, but not every gene. For example I ended up in the ER November 5th with something called “Hemipeligic Migraine” a rare serious type of Migraine that occurs with stroke like symptoms (they ordered and emergency MRI to rule out stroke, luckily all was clear) it is a genetic mutation that can cause movement disorders. We have been referred to a research center at Boston children’s for further testing. I’ve avoided any pokes and tests for now aside from those 8 failed IV tries in the ER, until January as we have to figure out what to do next. There’s a 6mm mass of cells with an abnormally high electric signal, something in between a lesion and a benign tumor, likely from in utero that’s located near the movement center of the brain and could be the cause or part of the cause of the problem, in addition to the original brain damage. Long story short; we have no answers, my nervous system is going rouge, and the rest of my systems are going with it. What a lovely time! . . . . #rarediseases #rarediseaseday #chronicillness #chronicpainwarrior #medicallycomplex #medicallyfragile #neurology #pastel #pastelart #pastelaesthetic #pastelartists #softpastelart #stabilo #carbothello #oilpastel #artistsoninstagram #chronicallyillartist #art #softpastel #pastelartwork #pastelpencils #pastelartistsofinstagram #undiagnosed #tumor #characterdesign #love #blonde #pencilsketch #chalk (at Boston Children's Hospital) https://www.instagram.com/p/B6tGNG_BWGO/?igshid=xn8nyj8qsw3s

[rosearth]

Life Update

I just want to document this. I don't know if I'll ever feel like this again. I want my future self to find this post again someday and reflect on it somehow. I am so happy. Life is... really good. Everything right now is... amazing. Summer starts tomorrow. I'm excited about school next year. I love leadership in band. I have the most amazing girlfriend. I have met some of the coolest people this year and we're only going to get closer. My relationship with my parents is currently stable. I'm getting my drivers license in two days. My skin is clearing up. I understand my migraines now and have a name for the stroke-like symptoms (hemipeligic migraines)I'm more comfortable with my body and my appearance than I ever have been in my life. I'm finally at a point where I understand my hair and how to manage it. I just got a new fish. My room smells like new car because we got a vacuum hat smells like it. Stevens living at home again and our relationship is great. It's so easy for me to fall asleep and I don't have insomnia issues anymore. I haven't had a sleep paralysis episode in months. I feel more connected to myself and the earth than I have ever been thanks to self motivated learning about astrology and crystals and stuff. I just got new converse for the summer. New movies that are coming out right now are all amazing (Beauty and the Beast, Pirates of the Caribbean, Wonder Woman, etc). Ms Luck told me how much she appreciates what I do and wants me for drum major next year. I just found that smashbox highlighter I lost for two months. Yukio makes me smile. Tiona makes me so happy and feel so loved. Madi is just fucking amazing and I love her more than ever. Life is just... really good right now. I know if you're just a random person reading this I'm sorry you read about me bragging about my life. Personal post, sorry fam. If future me is reading this, I want you to know that however life is for you right now, there are positives. This time last year, I was really really sad, I felt alone, I felt like I lost all my friends. I was scared and stressed. The only person I had was madi. I didn't have my permit, I didn't have security in my life, and I was having anxiety attacks almost every time I was at madis overnight. Life has gotten so so so much better. I know it's not going to stay that way. I'm not thAt naïve. But when it gets bad, there is a light at the end. I promise. I believe in you, and I trust you. Much love, June 2017 Amy.

[espeneldritch]

Yeah this happens with hemipeligic migraines too, kind of the same idea with your speech during an attack. It's scary

[faetheway]

The pain I walk around with today, working, studying and doing chores with would have left me in been for a week two years ago. The pain is still the same, it didn’t get better, I’m just better at letting it pass through me.

[espeneldritch]

Finally a good update on my situation

Hey guys, I know I've been looking desperate for a long time. I don't know how many of you are still around for my content but close friends will know my mental health has been a nightmare for a very long time. It turns out what I've been struggling with is along the lines of a psychotic disorder.

Long story short, living with this disorder caused me to be too paranoid to open up about the severity of my health leading to alot of misunderstandings in my life that landed me in debt. I kept it a secret against logic and went months without necessary to health medication (when I was too paranoid to ask for my coverage I would pay $325 CAD a month for my nessacary treatments which ate up my money really fast along with rent) this inevitably landed me in the hospital again but this time I couldn't pay the taxi so they took my phone and in addition to my usual hemipeligic migraine symptoms I was having a full-blown psychotic episode in the waiting room arguing with security about why the taxi took my phone (it was collateral. I didn't have money. Man gotta get paid somehow) I think if I didn't go to the hospital regularly for treatment I would have been thrown out for my behavior, but instead I was treated, then a social worker connected me with resources.

Skip forwards to today, the antipsychotics are finally starting to work. It's been about a month on this dose. Most things are a blur, times, dates, I know I don't have an exact disagnosis yet but I'm not severe enough for hospitalization for any length regarding my psychosis which is very nice. (Either that or they've listened to me saying I don't want that)

I'm also on disability. The worker who helped me set everything up was very nice and surprised I waited so long to apply. I feel very strange persisting on other's money so it's a been a very big drive for me to push myself in my actual passions now that I know a traditional life just isn't in the cards for me.

I'm finally, after all these years, finding some amount of peace. It feels like I'm not sliding downhill anymore. There's a long ways to go in regards to treatment, I'm very complex even though I'm not that severe because my brain is pretty divergent (I have ADHD and calcium channel mutation so medication never works the way people expect, some combinations like birth control or triptans could potentially kill me) regardless it's a pretty good feeling to have. I have money, my medications are free and I can create. I'm making a game and picking up comics on the side.

I feel brighter and healthier already. There was a dark point where it was so bad I was shaking too much to give myself my T shots without botching it several times even though it's been what? 10 months. Anyways, it feels good to be back.

[espeneldritch]

MIGRAINE 2! 🎉🎊🎉🎊💃👯🥳

[espeneldritch]

I can't remember if I sent this ask or not but I do remember sending a similar one quite a while back on a blog when I was younger and just beginning to navigate. I was really scared about my health.

I am on testosterone subcutaneous injections now (very happy about it ), and they've made my classical migraines more common and less severe and my hemipeligic migraines less common with no change in severity so far (although, it's only been about five months so maybe it's a good sample size) moral is- everyone's body has different reactions to everything, just voice your concerns lightly once you arrive if you have any medical conditions but be firm about your desire to transition and all your doctors should communicate and watch you closely.

I have hemiplegic migraine and I am ftm. I really want to start taking testosterone shots one day, but I don't know if my migraine will make it harder? I haven't had any migraines in half a year though...

Kii says:

The only info I was able to find is a theory that low testosterone causes migraines/headaches, so if that were true, taking testosterone would make them better.

(Cissexist language at link: http://www.healthline.com/health/low-testosterone/headache?showSwoop=true&utm_expid=.bq4wAkkBSjeddGcB8ufP1w.1&utm_referrer=https%3A%2F%2Fwww.google.com%2F#Overview1 )

I think it would depend on the causes of the migraines/headaches, since those can happen for a wide variety of reasons!

Lee says:

Definitely talk to your endocrinologist (or whoever will be prescribing your hormones) about your migraines and ask them what they think about it!

They may have suggestions about what dose you should be on because of that, and you can continue to message them on the patient portal or call as you start T to report on how everything is going and if you’re having issues and wonder if anything needs to change.

You should also talk to your neurologist if you have one, and ask them if they think testosterone will impact your migraines and once you’re on T, contact them if you think your migraines have gotten worse. They may be able to prescribe medication or adjust the dose that you’re on to help with the migraines!

Followers say:

anon said: I got horrible migraines and honestly when I first started T it was bad for a couple of days but I haven’t had another one since and it’s been 3 months (I usually had a bad migraine a few times a month so I think T helped mine)

screaming-nb said: My doctor told me that starting T might reduce migraines

toryinnes said: i havent noticed a difference with migraines since starting about a year ago. i dont experience thunderclap headaches, but what i can tell its probably dependent on whats causing them, if you even know? it would probably be advisable to see a doctor about them (if you havent already) to round down the causes, because testosterone could affect them or it could not

gendersuspender said: I’ve been getting migraines for half my life and was worried about this pre-T, too. Yesterday, I got my first migraine since starting T five months ago. For reference, over the previous year, they did become cyclic at a frequency of about one per month, so I’m pretty happy to have gone five months (six cycles) without one! If it helps any, I’m on a daily administration of low-dose gel and still get periods. I’m on AndroGel 1% 1.25g. I would have thought the dose would have to be high enough to make the ovaries stop doing their thing, but it seems to have worked out for me without that. I would suggest you look into some form of T that gives you the most stable levels if you find hormone fluctuations trigger migraines. I should add that pre-T I had extremely low blood pressure that contributed to my neurological problems. On T, my blood pressure is technically low but no longer in the “clinically dead” category, so that possibly unique indirect effect may be responsible for the improvement.

RigilNebula said:  Migraines are often more common in women, because they can be (though aren’t always) hormone dependant. Apparently estrogen can negatively impact migraines, and testosterone can be protective against them. Personally, I haven’t had a migraine since starting testosterone. But then my testosterone levels have always been in the upper end of the normal range, and my estrogen has always been in the male range, which may have had an impact on that.

boobless-wonder said: Hey, amab here (no hrt yet). I get headaches and migraines frequently so I think that it may just be reliant upon the person.

steverogersisbi said: I have to say that this was something my doctor discussed with me, it’s a definite possibility - but I suppose it would depend on dosages and the type of T you take?

moonfacedkid said: definitely depends on what the cause of them are, but they probably wouldn’t change. I had migraines before T and I have them now.

[phasesintime]

please dont get sick :(

Oh shdbhds ok, my disability doesn’t compromise my ability to fight viruses I’m not at risk sorry if i worded it weird ahh, ok it’s more like i’m cooped up because prolonged exposure to things like glare from the sun give me attacks, my condition is hemipeligic migraine with status migrainosis  which i explain to people as, imagine having a never ending migraine complete with brain fog, hallucinations and pain, but then sometimes i get migraines on top of that migraine and they pile up so much that the activity in my brain causes basically what looks like a stroke. I loose mobility on one half of my body, cant talk, and have very bad pain. I have to go to the hospital every episode so that they  can reverse it or else it goes away and comes back over and over.

 its an annoying thing to live with but it means i’m not in danger from the corona virus, i’m not on any meds that decrease my response either. 

so that’s the most about my health, i dont mean this as bohoo me or anything i just like to be outspoken because i know HM (hemipeligic migraine) is rare and people should know about it and what it does. it effects my daily life and  definitely my upload schedule is entirely dictated by it so LOL i felt it was important to open up, also didnt want to be cryptic and make all of you scared

[faetheway]

Hello, I’m Fae, I’m in my early 20s and was diagnosed with hemipeligic migraine disorder (chronic nerve pain) and chronic low blood pressure.

This side blog is a journal of some sorts for my illness. I’ll be writing about my symptoms and things I’ve discovered improve my quality of life.

[themostunoriginalpersonever]

Like, I pay for most of my phone, and all of my car and prescriptions ... but now I don't have job, and less than a thousand in savings.

My mom is diabetic so she needs meds and injections, and thyroid meds, and pain killers for her osteo arthritis and because she needs a hip and knee replacement, and my little sister needs her ADHD meds and meds for familial hemipeligic migraines. And my sister buses to school, so we need her bus pass AND gas to get the day home kids to and from school.

And my dad works a salary job, but for like 15 hours a day. And we could live on his salary but my parents are very in debt from the 2008 recession where he lost his job and their mortgage is now more than the house cost when they "bought" it.

And I want to sob. Because I haven't been this money stressed since I tried to "sell myself" when I was 9 and started starving myself so my parents would have more food. I can't do that now, I have presyncope.

Lol. Guess who has applied to hundreds of jobs, had friends AND family pulling strings for me, gone into stores with my resume, and is still unemployed???

This Bitch!

So like, if anyone wants to help me out with job searching tips, international/Canadian scholarships, donations, or even commissions for I don’t even fucking know what, hmu please.

I’m stress sick and getting desperate. I am really scared for school next year.