#iihawarenessmonth

[mamimaycrochet]

It's been a while since I posted ! Here are some of my favourite things, yarn by #burrowandsoar @burrow_and_soar , tea and #angelfoodcake (genovese to the rest of us!) #mamimaycrochet #knitting #knittersofinstagram #handdyedyarn #comingback #ptsd #iihuk #pseudocerebri 💕💙💚 #iihawarenessmonth https://www.instagram.com/p/B102_jfpL8k/?igshid=195v46oefgixn

[visionshadows]

So I tend not to get personal, but September is IIH Awareness month and hey, I have this. And it fucking sucks. I have two shunts, one in my brain and one in my spine, and I still have constant pain and pressure in my head. I can't take the only medication that is used to treat this because it makes me suicidal and I can't eat anything on it. I fear every single headache I have because I don't want to have more surgery - and that is my only option - because the last recovery was so brutal. My first surgery for the shunt in my brain resulted in blood clots in my lungs so the second surgery for the shunt in my spine was frightening. I have a 6 year old and he's gotten used to me not being able to interact, to not be able to do anything. I have days where I can't remember words or how to do laundry. I have crazy mood swings. I have a constant ringing in my ears that can drive me crazy if I don't have some sort of noise to concentrate on. I'm depressed and have anxiety. I get lumbar punctures by choice. My vision is stable but I still wake up to double vision every morning. It will swim and go grey in spots if my pressure is high. It is a completely invisible illness. There is very little research being done on what causes it. No one knows and frankly, it's rare enough that it's not worth it to study it. All the research is on how to treat the symptoms, which off label prescriptions might treat one part of the disease. It's not just a headache. It won't ever go away. All I can hope for is remission.

[nv-rivera]

Second book, first chocolate bar = how I am celebrating two hours hanging in the hospital! #annualvisit #dontpanicimfine #iihawarenessmonth https://www.instagram.com/p/B2PlHvnhm1J/?igshid=1ty5hzazpmi58

[iih-brains-trust]

Which would you choose? Sleep for 8 hours a night in interrupted, or be pain free for 8 hours a day? Let us know in the comments which one you would choose and why. #iih #iihbrainstrust #iihawarenessmonth #bih #ptc #spoonie #spoonielife #soooniewarrior #choices #chronicillness #chronicpain #cantsleep #painsomnia

[emilydstrange]

September is idiopathic intracranial hypertension (IIH) awareness month. It is also also known as pseudotumor cerebri (PTC) and benign intracranial hypertension (BIH). I know this because I have this disease. I've been living with it every day for 4 years, since April of 2013. What is IIH? It is rare neurological condition that affects 1 in every 100,000 people in which pressure inside the skull increases for no obvious reason, causing swelling of the brain and optic nerve. There is no cure, but it is treatable. However, the treatments are few and not always effective. Remissions and recurrences are common. Shunt surgeries and spinal taps to drain spinal fluid and relieve pressure, diuretics to reduce fluid build up by increasing urine output, and weight loss are among the only treatments available for this disease. Those of us affected by this condition can experience headaches/migraines, pain in and around the eyes, as well as back, neck, and shoulder pain, tinnitus, dizzines, whooshing sound in the ears, cloudy, blurred, or double vision, and nausea/vomiting on a regular basis. This is pretty much how the last 4 years of my life have been. Is this disease terminal? No. Am I dying? No. At least not today. Is it life threatening? It can be if left untreated. Having IIH puts me at higher risk for stroke, aneurysm, and permanent blindness. So how do I deal with it? I live. I take it one day at a time. I keep moving forward, trying to make the best of each and every single day. I follow up with my neuro opthamologist, take my meds and manage my weight with diet and exercise. I learn. And I hope for a cure. So I post this to educate and to raise awareness. #intracranialhypertension #iihawarenessmonth #pseudotumorcerebri

[cateredsolutions-blog]

[swimmiey]

Intracranial Hypertension (IH) is a rare neurological disorder that results in increased cerebrospinal fluid pressure within the skull. Doctors used to call it “Pseudotumor Cerebri” (aka fake tumor), because those with brain tumors also have elevated intracranial pressure—causing the same symptoms and presentation. Life with IH varies greatly from patient to patient, but is a serious condition that can greatly impact quality of life. Having severe headaches, nausea, vertigo, loud ringing in your ears, and even vision loss every single day sounds like a nightmare. But it’s reality for those with Intracranial Hypertension. Not every patient experiences all of these symptoms, but they are all very typical with IH. Some have “good days” and others do not. Many patients are unable to work or go to school because of their health. To put it bluntly—this condition is difficult to live with. Just because you see us smiling, laughing, or out doing something doesn’t always mean we’re feeling better—it means we’re trying to enjoy our lives despite our illness. Treatment options are unfortunately not great. Medication to treat IH is very harsh on the body (particularly your kidneys) and has many undesirable side effects. Those that don’t respond to medication often resort to brain shunt or stent surgeries. There is no cure or “quick fix” for IH and it’s accompanying symptoms. #iihsucks #iihawareness #invisibleillness #intracranialhypertension #headachefromhell #myheadhurts #chronicpain #chronicfatigue #chronicillness #chronichope #iih #pseudotumorcerebri #pressureheadache #vpshunt #lpshunt #butyoudontlooksick #weneedacure #blurredvision #paralysed #tinnitus #iihawarenessmonth #spoonie #spoonielife #lumbarpuncture #ineedaspinaltap #totiredtofunction https://www.instagram.com/p/BntSHddCFk0/?utm_source=ig_tumblr_share&igshid=1ud9ojtv8mt82

[mamimaycrochet]

Off to get my eyes tested blurry vision in my right eye nothing to do with my #heterocromia #oneblueeye #onegreeneye #mamimaycrochet #iihawarenessmonth #iihuk 💙💚 https://www.instagram.com/p/CLG_2qfJ92G_jeUfPoiNX6hcTGb7pLAWnoxxJ80/?igshid=og2c0bt5cua8

[rousey16]

I didn't know whether to post this but I have! September is IIH awareness month. I am 1 of the 100,000 people that suffer from this and have been diagnosed for the last year. My brain is literally being crushed by my own spinal fluid. There is NO cause for this and NO cure. I wake every morning feeling hungover. Constantly feel tired, no energy, always have headaches and can get blurred vision. I'm on medication that effects my memory, hense why I'm so organised, I get pins and needles everywhere and also loose my words sometimes. This is not fun. We need a cure. Something to stop this. To get life back to function. I'm raising awareness. But for now each day I wake up with a smile and do the best I can and enjoy life to best. One day there will be no pain. #iih #iihawarenessmonth #chornicpain #health #rare #spinalfluid #headaches #brain

[nv-rivera]

Visual field time. #iihawarenessmonth #eyehealth #beep https://www.instagram.com/p/B2PdJtJh9fA/?igshid=1hpm1gi97zuw5

[swimmiey]

Excuse the language, but this is so accurate the last few weeks. So I had my appointment with the oncologist today, I was an hour late because the highway was closed because animals were walking on the road.. But she just moved a bit in her schedule and could still fit me in. I had a really nice one today, I loved her. She was so mad at the neurosurgeon, how he is reacting, refusing to come see me and just let the attending tell me what he thinks of the situation. She's going to try get me in with the neurosurgeon at the hospital she works, but she has to consult the oncologist about it because she is still in school to be an oncologist. She said if it was up to her I would already have the letter. I really hope she can do something. I'm sad I'll probably never see her again, she was really nice (but all the nice docs aren't there permanent and leave after a few months :(). I have yearly follow ups with someone from oncology, to see if the treatment did leave any long-term side effects. I'm at higher risk of getting another cancer, heart disease and many more. Most of my problems now are caused by the treatment 20 years ago. These follow ups are not just for me, it's also for research so children who are treated now can have less side effects and I'm happy to be a part of it. No child should get through this. Not now, not ever. -------------------------------------- #Storyofmylife #childhoodcancer #childhoodcancerawareness #childhoodcancersucks #childhoodcancerresearch #invisibleillness #chronicillness #oncologist #fucancer #iihawareness #iihawarenessmonth #pseudotumorcerebri #justspooniethings #spoonielife #spoonie (bij AMC Ziekenhuis)

[nv-rivera]

It begins. I sit in the #waitingroom at 2:06pm. Four books for reading, one notebook, one pen, two chocolate bars and a full bottle of water. Let’s see how it goes. It’s #TurbinTime — he’s my eye specialist. He’s the guy that had my eye in his hand ten years ago — figuratively and literally. He helped me save my sight. He made the reading and writing in these books possible. I’ll wait as long as it takes. It’s Intracranial Hypertension Awareness month. Head to ihrfoundation.org to learn more or to donate. Head to @onwardpodcast, episode 18 to hear a bit about my journey with #IIH. #iihawarenessmonth https://www.instagram.com/p/B2PaaURBaui/?igshid=5eczw2y5ig4i

[mamimaycrochet]

This is what #iih looks like #iihuk #iihawarenessmonth #pseudotumorcerebri #shuntlife #cerebralstenosis #headache #generallyfeelingcrappy #mamimaycrochet 🤯💙💚🤕 https://www.instagram.com/p/B2B6KyTpRp2/?igshid=1gge6scjx3f7e