#chronic iih

[lambcow]

It's always so good to hear success stories like this. Honestly, amitriptyline was the first medication that even TOUCHED my migraines and gave me relief. I went from daily migraines to maybe half the month and similar to this, they became more manageable. If I noticed a migraine coming on, I could take preventative measures and the migraine would ease back to the shadows rather than take over my life like a wildfire as they would pre-amitriptyline.

In the end it wasn't enough relief for my case and there were other side effects that I wasn't pleased with from the medication that weren't worth it to me so I moved on and found a different medication with my doctor that works for me even better that I've been on for almost two years now, buuuuut--

I was on amitriptyline for probably three months and it was the medication that made me believe that there was hope for my chronic pain at all, sooooo, yeah. It works and it seriously does make a difference. I loved it as much as it was the right move for me to try something else because it really did make my life so much more liveable.

Documenting this for my own sake because I can't find my pain journal, but I think the amitriptyline is doing something to target my nerve pain; it maybe just needs more time or a higher dose to fully tackle it.

I was in the kitchen preparing food for the next week--something I've not been well enough to do for a while. And I could feel the pain starting to kick in, stretching over the top of my skull toward my eye with certain movements, which we know is an issue and are targeting in PT.

Now that I'm resting, the pain is receding much faster than it normally would, and the pain itself is less sharp and burny and more just kinda there. Like pressure behind my skull as opposed to something all-consuming that takes me out at the knees.

Interesting. Anyway. See how the rest of the week goes.

[problem-project]

Sometimes, I still feel so able bodied.

Like the aches and pains are quiet for just a moment long enough for me to remember what freedom I used to have. It's almost like if I yearn for it hard enough, I can have the old me back. The me that could still achieve all my dreams. The me that had no idea what was coming and how much it would all cost me.

Somedays, I still feel the urge to live the way I could before. Carefree and boundless. God, I can almost taste it.

[listen-to-the-inner-walrus]

I've made this joke about five thousand times, but goddamn, man.

[alittledragon]

New type of vampire who drink brain fluids.

You think it's unsexy. I have idiopathic intracranial hypertension. We're not the same.

[inktasticmagic]

Ngl, Visual disturbances are the strangest things to explain to people- like

“I see two of one object, overlapping atop each other - comes and goes, it’s like some photo filter. When I stare at objects for two long I begin to grey out as the colours merge into one - creating a distorted blob. When I stare at the sky I see weird eye floaters that look like mini worms in my eyes. Sometimes I see fragments of darkness for no apparent reason, as if the end of earth is calling…”

*Terrified Employee points at sign franticly* “M’am, this is a Wendy’s..”

[cheerfullycatholic]

Thought I should mention this on the IIH tag, just in case anyone knows more about this stuff or if they want to try it themselves

I was having a really bad really relentless IIH flare up for three months that started to go away after two days of taking this homeopathic anxiety stuff a few times a day. It does nothing for my anxiety but idk maybe it relaxed something in my spinal cord and brain that helped the fluid drain?? That was around the 18th or 19th of August and I've been taking two tablets a day since then and haven't had anymore fluid cause pressure or pain. I can think of two times when I've taken this in recent years for my anxiety where I had pressure that went away pretty quick, and where I felt like I should've had it and didn't

Idk if this was actually the thing that helped me this time but everything else I was doing to avoid an ER trip wasn't making a dent in it. I only saw change after taking this

The holidays are a really stressful time for me (stress being a major cause of my flare ups) so I'll be a test dummy and keep taking this. If this actually significantly helps manage my IIH symptoms, it'll be a real game changer

[laika-of-the-stars]

i enjoy going through the IIH tags when im feeling down in regards to my health- so i wanted to ask something to other people with this condition. even when medicated, are the pressure headaches a constant? even after medical intervention?

mine are always there, except for the initial few minutes to an hour post spinal tap. and im really upset about it right now. makes me feel like im faking or im never going to get better, or that one day ill need a shunt (very possible) and brain surgery scares me so much. im tired of having the constant pounding headache whenever i dare to lay down, or even just do anything at this point.

i just would like to hear from other people, maybe get some advice on some like. home remedies for lack of a better word that i can do alongside my medication and the occasional medical intervention.

p.s: i did get a neat trick from one of the nurses during my last hospital stay. put an ice pack/cold pack on the back of your head, and a heat pack on the front. for me it helps greatly, even if it isnt a perma fix, so i thought id share it to maybe help others.

[junpeijackflash]

Call me JFK the way the back of my head be exploding

[vengeancemoths]

my optometrist asked me what kind of birth control i'm on and if i'm taking vitamin a supplements, because both of those can affect my condition. this marks her as the first specialist i've seen in the 8 years of having this that has given me more information than "you should lose weight"

[mind-ctrl]

Medical gaslighting is such a huge fucking issue because not only were the medical people gaslighting ME, I had to gaslight myself into believing my condition wasn’t as bad as it is because literally NO ONE WOULD HELP ME and I just had to pretend I was fine until I got some answers.

I got told I’m thin so therefore healthy. I got told I probably have an eating disorder and mental health issues causing my problems (I am a healthy weight for my height and I eat very well). I got told to “just take Motrin it’s probably fine”. Then come to find out it’s actually not fucking fine and I have a condition that could literally make me lose my sight and hearing. That me just forgetting shit and being foggy all the time isn’t just my ADHD getting worse or me finally losing it. That my constant neverending headache and various and sundry neurological symptoms aren’t “probably okay”. It’s because there’s signs of there being too much fluid and pressure in my fucking skull. So that’s cool. That’s great.

It took FIVE (5) years to even be taken seriously and get the proper MR scans. Literally every single other doctor was just like “idk that sucks but hey at least you’re skinny”. Then just continually did the same blood tests over and over and wondering why I kept coming back in when the problem didn’t magically get better and in fact, got worse. I had to google and google and google on my own while literally begging to get scans and be sent to a neuro while my shit just got increasingly worse.

It’s such a mix of emotions finally having an actual answer cause like it sucks that I have a brain condition but at least now I know WHY all this shit is happening to me. I’m mostly angry though. Cause fuck our medical system. Fuck shitty doctors who don’t give a fuck about anything but money. Fuck misogynistic doctors who blame everything on hormones or weight or anxiety.

I’m glad I trusted myself and kept pushing for answers though. And I did it all with a fucking brain condition. While these bitches went to medical school and are still incompetent.

[achillesthesimp]

Yippe I have a headache and it hurts to move my eyes just when I thought we were do better don’t you just love chronic illness

[problem-project]

I'm shaking and crying right now, I just got a call for a cancelation at my neurology office and they offered me an appointment opening TOMORROW!!!! I've been in hell from my iih pressure and my appointment was still over a month away. Something in the universe aligned for this to happen I just know it because I never get this lucky. I needed this so bad, thank you thank you thank you

[little-pissbaby]

tw it's a medical update. I talk about surgery

it's official! I need brain surgery.

for all the new faces I can't see, I have idiopathic intracranial hypertension. I have since I was 15, but it wasn't diagnosed and treated until I was 25. for a full decade, I had a migraine that did not let up and no one could figure out why. to be fair, what skinny, barely-scraping-100lbs 15 year old develops IIH? I was taking acetazolamide for it, but unfortunately my kidneys are now chicken fried and I currently have Acceptable™ kidney function.

I'm going to have a ventriculoperitoneal shunt placed. I don't have a date yet, but I expect it to be sometime in the first few months of the new year. it will be risky, but better than permabanning my kidneys and taking one from my brother.

I am,,,,, exhausted. every time I feel like I'm finally on top of my health, something goes catastrophically wrong. thank god for friends willing to stick it out with me through the inconsistency <3

[alittledragon]

I wish I could just call my work and say "sorry not feeling like it today, my brain juice said no work only sleep" and tada.

[inktasticmagic]

If you are in the position to donate, please do so. This is something many people including me suffer with. IIH (idiopathic intracranial hypertension) it’s the build up of spinal fluid in the brain, though not life threatening, it can lead to visual issues (possibly leading to blindness) and extreme headaches. This is a condition that I and many people suffer with, resulting in very debilitating symptoms. It affects 1/100,000 people roughly and is increased in those who are biologically female and are overweight, 20/100,000. Previous studies have been too small to say much, there is very little known about this condition. Please spread the message! If you can’t donate, which is fine, This can be spread by reposting or sending it directly. Anything helps!! Thank you for reading!!

https://secure.jhu.edu/form/IIHstudy2021

[rickypottsboyfriend]

graduation ? ?

uhhh ok so i did my final diploma today SO that means im technically done high school we just gotta wait for it to be marked itll only take like a month or smth its ok

i turn 18 in under 2 months and now i gotta figure out a job i can actually do so uh yea but like cool life updates 👍