I have a FAKE brain tumor? | Pseudotumor Cerebri | Health Update

An health update/explanation of why I've been so absent and my experience with pseudotumor cerebri (also known as idiopathic intracranial hypertension). I've had headaches everyday, fatigue, even vision loss! It's been very scary. - â open for more! â -
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[@KJ-sn3oi]

Hi Lily, I was diagnosed with PTC/IIH over 30 yrs ago when I was 19 yrs old. I understand your fear of returning to school when you're not 100% well. I too faced that when taking a semester off from school because of PTC but I did return. At 19yrs old I had ALL the terrible symptoms of PTC/IIH and a spinal pressure 3x higher than normal. Dr's told me and my family that they didn't expected me to live given how high my spinal pressure was. I was apart of a case study at that time of the effects of PTC which at that time was considered unheard of (if not rare) to be found in African Americans. Well, I did live and have been doing well with no PTC/IIH symptoms or need for med's in 28 yrs. I'm 51 years old now. I wish you encouragement and healing from PTC/IIH.

[@jezzydaniel7455]

K J Did you take medication or have weight loss? Anything special?

[@younghappyfeet9736]

I was 10 when I was diagnosed with it. They took 50 cc off which is well if 3x to. The normal amount is 9-15 I think. I’m 15 now I’ve had 2 spinal taps and about to have my 3rd one.

[@Carolina_girl86]

I’ve had this non stop since June 18, 2022 (19 months). This started when docs took my off a medication too fast. I feel so out of it. I feel awful every day 24/7. I can’t believe this.. I can’t see, can’t drive, can’t work, can barely care for myself and my son. I was 174 lbs and worked out every day when this began so I know it wasn’t my weight that led to this. I’m 224 as of Oct. I had to quit school and was working on my masters.

[@egyptmakeveli3555]

This video and the comments literally made me feel so much better I’m not alone I have it and it’s hell the excruciating headaches my eyes hurting and swelling at times it feels so good to see other people who are like me I hope you feel better

[@3343549647]

Yesss!! I mean it’s hitting me bad!!!! I don’t feel like myself I feel like crap and I take pills and injections for migraines and headaches.. let’s not talk about the pressure you feel in your head and by your eyes.. being off balance.. I been going hard in the gym for months the last week or so I haven’t been able to just draining..

[@kirasimmons8159]

I have pseudotumor as well. Stay strong. Did they speak with you about the surgery. Weight loss doesn't help as much , surgery is the best way to help with this issue. I went through the medication and I went through the weight loss. The surgery was the best help.

[@puny5417]

I’m doing diamox and weight loss at the moment. I’m not severely over weight but I can lose 20 pounds I have lost 8 in a week and about to start a smoothie detox. It’s been so hard. I hope surgery isn’t in my future. What type of surgery did you have?

[@critters08]

I just found you and also have this since May 1993 and went totally blind, had a procedure and received partially sight back and yet again losing weight, and totally feel u and with u, prayers are with you girl HUGSSS

[@avoiceinthedark2028]

Hi, my niece is going to Germany to get some of her eyesight back, she has raised 9k on her own and her appt is in oct. anything helps, if you can share in your networks it would be so wonderful. I am so sorry that this happened to you too.

[@goodlook]

Great vid. Good luck. I was just diagnosed with this in dec. of 2016 and started diamox a few days ago. My headaches come and go. If I stand up to fast I blackout for a few seconds and get dizzy but recover pretty quickly. The hearing my heartbeat thing in my ear all day is super annoying and distracting also. Especially when it's loud. I hope you get better and am rooting for you.

[@raisinggunieapig8753]

Raymon Bueno I hear my heart beat in my ear also. I started getting all my symptoms when I was on the depo shot. I seen this one dr and he blew me off like it's all in my head. I told my dr I don't want to see him and they got me an another dr appointment with another dr. I don't see her till the 7th of February.

[@chazenboi]

Hi lily, I'm so happy I came by your video on KZbin. I was just diagnosed with PC on Wednesday. It's shattered my world especially because this is all new to me and I have 3 young children.

[@LilyMeadeBooks]

It's certainly very scary. Especially since sometimes it isn't really a diagnosis, but a group of symptoms that don't fit anywhere else. That's been my problem. Treatments for pseudo haven't really helped me, but there aren't many other ideas. I'm posting another health update in two weeks. I hope treatment does help you!

[@rasheeda1303]

An Article states the cause use of birth control pills be safe.

[@dichelle95]

Girl i have the same thing im tried of brain surgery and i have surgery every 2 years my shunt always malfunctions. And they cut so much hair off. It makes me uncomfortable to wear lots of hairstyles. Oh and don't for get when it's cold outside ugh annoying. And i went blind for a year and have no perifial vision. But go to school! You can do it trust me. It took me twice as long but worth it. I graduated last year may in culinary, I've done study abroad to south America when to Machu Picchu and traveled other place. You can do it. I might even open my own bakery/ cafe. You will get through this dont let it stop you.

[@XLCheerleadersXL555]

I was just diagnosed with this by my eye dr and have to wait to hear from my family dr and I am terrified. I have had migraine and vision and nausea for the last 4 days. I got a CT scan and it came back fine until my eye dr found it.

[@kaitlynmckee6088]

I have this too. And. Sometimes I think why me and why does it happen. And when I hear people talking about this Makes me feel like I'm not alone.

[@ravenicoleddie]

Hi ! Newbie here to the gang . I went to the ER today and found out I had this as well. However I had a seizure about almost 2 years ago and they said they found an autoimmune deficiency. However , I don’t have insurance so I did not go check up on what exactly what exactly I had autoimmune . Fast forwarding, as far as vision , it’s bad but it’s not great but it’s good. I took doxycycline for um… yk :/ & I thought that was the reason for my headaches , IN FACT . It increases pressure in the brain ON TOP of this condition giving pressure in the brain , & so today I found out . I was extremely scared , because im trying SO hard not relapse (another seizure) & stress . But hey I honestly have hope that I’ll be okay.. I really appreciate this video , I hope u gotten better! I would love to hear your update

[@TheBionicRectum]

I hope you are doing better and fully recovered. I had PTC at 18 in 2002 when I was in college for the first time myself. It was directly linked to Tretinoin and Tetracycline antibiotics for acne in my case. I was of normal weight at the time. 22 years later I still have optic nerve damage. Luckily, I was not blinded. The pain was unbearable and I wouldn't wish it on anyone. I also went legally blind for almost two weeks before the spinal tap and diuretics got my vision back. It was terrifying. Good luck to everyone going through this.

[@jezzydaniel7455]

I have it also. I got it 12 years ago and fit lasted about a year, then I went into remission. My eye dr just saw minimal swelling in my optic nerve and my opthalmologist put me on diamond until i see a neurologist. We're gonna be alright. Lol yeah a fake brain tumor sounds like it wouldn't cause much, but I have been through this before and will beat it again💪💪 You will too!

[@queen_bubblez9077]

I have this too the headache feels like a sledgehammer non stop with squeezing. Your not alone. I get weak from walking and dizzy and light head

[@ariannaduarte1474]

My wife was diagnosed 2 years ago with IIH and she's been taking diamox since then, she had to have a spinal tap when she 1st was diagnosed because her pressure was at 52 and her optic nerves were hemorrhaging and were very swollen. She had her 4th spinal tap last week and her team of doctors won't make up their minds on what's better for her: keep taking the medicine and keep losing weight (wich is not helping n her case) or brain surgery to place a shunt to drain the excesess spinal fluid. Now she's starting to get vision loss and she has blind spots on her peripheral vision. We hope for the best, I wish you guys the best and for your support system as well.

[@jezzydaniel7455]

Arianna Duarte I had some peripheral damage also and the hemorrhage etc but after a year of diamond it went away for twelve years, now it's back, but it's minimal optic swelling that suggests that. My mom says she prayed it away twelve years ago, I'm not religious, but I am spiritual and I do believe her. I was only 20, now I'm 31.

[@highwayxj9397]

Any update on your wife?

[@ChantalesprettylittleDIYS]

I was diagnosed with the same condition 3 years ago. I changed my diet, and I feel much better

[@FeruzaErkinova-bw8ww]

hello, I also have IIH, what changes you made in your diet? could u please explain

[@nicolaatkinson7542]

Hi there Lily, I know this is from a while ago but I'm wondering if you found any kind of glasses/lenses worked for you? I also have this condition as well as other neuro-conditions and they told me that there were no glasses or lenses that could e fitted for optic nerve problems. I would love to know any information you may have acquired along your journey. Goodluck girl.

[@Roxie1255]

I have PTC too please do more videos on your journey

[@LilyMeadeBooks]

I plan on making an update sometime this week.

[@jamssnana4084]

I'm a 59-year-old woman, and was finally diagnosed 4 years ago, when a spinal tap showed a pressure of 58. I had 2 more the following two years and the pressure was in the upper 20s. Then I had one about 3 weeks ago, and it was 47. My migraines had become horrendous. But I haven't had one since the spinal tap. I do have vision problems with my migraines. I get shooting stars, blips, mice (little dark, shadowy shapes that move really quickly then disappear.,. they look like mice), and blind spots. It's no fun, but now that I know what it is, I can live with it. My mother gets only the aura with an ocular migraine most of the time, and only rarely gets the actual migraine. It's very scary, this IIH. For me, the lumbar punctures are like magic, and in between, I take Dilaudid and Phenergan for the pain and just try to live with it.

[@heatherdizzle339]

I have this too! I was diagnosed 12 years ago. They wanted to do a shunt but I was too scared to have it. Hope you are doing well!

[@mariahdrong692]

My identical twin and I have had pseudo tumor for 6-7 years now. I have had 2 spinal taps and 2 blood patches. She has had like at least 30. She used to have to go every 3 months to the hospital. I hope you are doing well. I'm currently pregnant so unfortunately all of my symptoms have gotten worse.

[@mckennagwaltney3467]

Have your dr considered a shunt surgery ?? I had mine in 2017 and its helped alot

[@XxMaJoRxX77]

I’ve never wanted to get pregnant because of the issues that could reoccur... you’re a trooper and I hope you’re well

[@Achala148]

Hi Lily, I know this vid is 6yrs old now, just wondering how you are getting on with that pseudo tumor? I recently came across some info on Caring Medical channel, and wondered if you have had your neck assessed? These pseudo tumor symptoms can be from kyphosis of the neck or upper vertebrae issues... have a look at their vids on the subject and see if is relevant to you... you are an amazing, strong and positive soul, a true inspiration. Keep it up!!!

[@Yourcosmicsoulsister]

I have it too! I had to stay in bed and sleep all day because of bad headaches!

[@tameathompson5029]

Girl me 2 I had to quit my job too I’m really sad to be going through this bc it’s stoping my life like crazy

[@gennerobootz6490]

Your stronger then me all I do is cry and say why did this happen

[@roxanna-louisefaulkner6558]

I am in the UK and made a KZbin video myself on this condition. Really like your video! I have had this for around 5 years now 😩

[@kelseycartright8758]

Me too 😢😢😭😭

[@Gemini1kibblesnbits]

Praying hard for you sweetie. I have the same thing

[@torilia5098]

I was diagnosed with this in 2017. The first symptom was flashes of light, then blurred vision in my right eye. I went to a specialist who noticed that I had a lot of pressure buildup, and he suggested I go to the ER for them to conduct a lumbar puncture which was unsuccessful. Then I was admitted to the hospital where they did a lumbar puncture and a excessive amount of fluid was drained and I was in the hospital for about a week. I also got severe headaches.

[@AlwayysBeKind]

Hey. Did your vision get better and was the lumbar puncture scary and did it hurt?

[@leezaleeza6539]

I was in the er last night and the Dr mention that. So I have to get check to see if I have it.

[@officiallyelyssa227]

I’ve been diagnosed with it, the only way the doctor suggested I could fix it was losing weight

[@_MYSTIC_]

I have this condition too although in the UK we call it Idiopathic Intercranial Hypertension. Hope your still doing good?!

[@plus1everyday63]

It’s literally called the same thing here in us lmaooo

[@kirasimmons8159]

I shared my story on my page. Feel free to view it. However medication is a temporary fix.

[@anjelicasanders1271]

Me too...

[@natanyarosee]

I have this and I’m having a vp shunt placed in just over a week

[@sierraamos8214]

I have this as well it's really hard

[@fedahazim8642]

I had this in 2018 . Everyone around my believed it's tumor even me I was even ready to accept it and started grieving lol .. thanks God it wasn't

[@briannavanderlaan5633]

I was diagnosed with IIH in early November of 2016. Im only a junior in high school so it is taking a toll on my education. I have been taking diamox and am trying to lose weight. It isn't happening quickly but I could buckle my belt tighter this morning. Please make more videos. Our journey's are very similar and it helps to know I'm not alone.

[@thisismyfightforthem3790]

Brianna Vanderlaan I was diagnosed before my senior year a couple of weeks ago, so I totally understand the education part.

[@amylehman7872]

Brianna Vanderlaan hi doll they just found iih in my . I feel u girl. I send love to you on your journey

[@saysHotdogs]

Sweet baby I’m so sorry you have to deal with this

[@unleashedfamilyvlogs5499]

i also have this

[@mals3744]

Hi I'm happy to see so possetive. Let me tell u some thing could help you too,i kow a woman n who was suffering like for 5 years long .By the time she started to take a medicine with a name Diamox regularly she is recovered now ,so cosult ur doctor about this . My best wishes to you

[@madisoncottrell2527]

I have it as well it sucks a lot huh!? The pain is unbearable most times and I can’t have soda no more lol also I get brain freezers 10 times faster than usual 🤷🏻‍♀️ and I don’t think my meds are working

[@awsomekrys]

I have iih as well weight loss is helping praying you go into remission !

[@ah-ss7he]

Any updates?

[@bjorndevries5273]

I have too

[@onehellofanight1161]

How are you losing weight???

[@awsomekrys]

Hi still in remission thank for !!!! I go to the gym and try to stay active

[@3343549647]

I do the same but the past week I have been feeling like crap and haven’t had the energy to go which I hate because I feel it’s going to set me back I already lost 10 lbs and I was aiming to lose more praying that it helps because I don’t want a spinal tap

[@valenblu6846]

Same 😭

[@raisinggunieapig8753]

I have bad headaches I have the same symptoms that u have I was on the Depo shot my headaches and other symptoms started when I was on the depo shot. I see a new dr in February for my headaches I told the dr when first got the headaches. it hurts behind my right eye and it will get where I can't see far away.

[@codiipop]

This is what I'm dealing with it only showed up when I had the depo, did you find out if you had this condition

[@lisacrumley4979]

I have IH as well mine is secondary from my other disease. Arachnoiditis. Have they talked about a shunt? If your vision has declined there different types of Shunts. VP and LP Shunt and another one as. Well. I have a LP Shunt and have lost over 67 pounds. For me it's gotten worse. More pressure problems plus I'm on Diamox ECT... I'm having shunt revision surgery in 2 wks. But it made a difference when it was working well. I hope things are going good for you and I hope to see a update video of that. How's school and your Journey! Just know your. Not alone.😊

[@LilyMeadeBooks]

My health has greatly improved since this video, thank you! I’m about to finish up school this June. I hope your health also improves! ♥️

[@XxMaJoRxX77]

It hurts. I went blind and was told I’d never see again. But with lots of diamox and weight loss, and spinal taps they saved me. However, I got it when I was 10. 10 years old. I have permanent damage and blind spots and now I’m getting older (almost 27) I notice my eyesight is getting worse with age. Which they warned me about as my case was severe. But take care of yourself! It’ll be okay

[@LilyMeadeBooks]

I’m so glad you’re doing better! I am too, but my eyesight continues to suffer from what happened. I’m actually going in to the doctor for a new vision prescription today.

[@XxMaJoRxX77]

@@LilyMeadeBooks I’m going on Monday to talk about blood pressure meds again. I wish you the best! It’s so hard finding people with the same condition. As I got older I thought “okay it was a one time thing” I didnt realize all the stuff the makes the eyesight worse as I got older.

[@thriftykristy1132]

My daughter is 10, and they suspect she may have this condition. I hope she can keep her vision 😢

[@bb3ll07]

This is what I think my cousin has…. She woke up 4 years ago and she couldn’t see and these neurologist have been giving her the run around for 4 years now and we got a second opinion from someone in another state and they say it could possibly be this disease I can’t believe her neurologist let her suffer for 4 years like this… I’m glad I convinced her to get a second opinion They keep telling her she is blind forever which I don’t believe is true

[@RaxhealUrbalejo]

Who did you go to first and did you have an IUD?

[@pm-r6136]

Hi. What kind of doctor is helping you? My family doctor thinks I'm making up stories. I had the Mirena IUD for 2 years.

[@saysHotdogs]

Patty M-R go to an eye doctor. Have the eye doctor check for any optic nerve swelling. It’s a big red flag. I don’t know where you are but getting into see an optometrist is usually a lot easier than any other doctor if you’re in a country with socialized medicine

[@techsavytronicstechsavytro528]

Does MRI or scans show this at all?

[@jentosh6937]

Hi, I also been told that I am one of the lucky ones

[@dlloydrebel4629]

I have what u have.

[@thatstrami]

❤

[@meredithr9824]

Those spinal taps suck.

[@jodi-annefranklin1921]

I have the same condition I hate it I have to get my spinal fluid drained and then they put me on medicine

[@Gemini1kibblesnbits]

Jodi-Anne Franklin me too. Praying for us all.

[@meenakshijat2855]

Did you get back vision

[@gennerobootz6490]

I have this and it sucks I got it when I was 20 to 24 then it went away I’m 32 now it came back luckily the mri showed a mri of a narrow Venus vain so I got the stent but i still kinda feel strange maybe i need to give it more time you should go on diomox and Topamax and maybe you should talk to a neurosurgeon about doing an angiogram to see if you have any narrow Venus Vain maybe you need a stent do you have any questions you can always message me I got the stent last week I feel a little bit better but not 100% and I’m getting a little upset because I don’t know why I’m not feeling better maybe I just need to give it more time and I too need to get a pair glasses.

[@beccacooksey4480]

I am 13 a few days away from 14 an was diagnosed around 11years old. I can barely walk when I have migraines and have had many rumors spread about how I had an important surgery when really I just had the flu. A couple months later I had a spinal tap which caused me to be dhydrated and throwup while I couldn't stand up for more than 10 seconds or I would get dizzy and lightheaded. After a couple of days I had to go back to the ER two hours away during a sunny day (while having light sensitivity). I had multiple doctors come and look at my eyes and brain to see what it looked like I felt like I was an animal being tested on. A few weeks after I became myself again I now have around 4 migraines that are severe in a week but I have one everyday but it is less than before I had my spinal tap.

[@saysHotdogs]

Becca Cooksey you’re doing well and you’re the bravest. You can do this you are strong and you are beautiful

[@XxMaJoRxX77]

So you can have severe “low pressure headaches” from spinal taps. I’ve been there and they suck :/

[@transnerdboy]

i have ptc as well. not a fun club to be in.

[@LilyMeadeBooks]

A terrible club indeed!

[@transnerdboy]

no doubt. i hope you dont mind, but i sent you a private message instead of just writing in the comments section haha.

[@adrienne3180]

I want to leave this club

[@nintendy]

I'm really surprised that you could lose your sight when there is no actual Tumor; I mean, I understand you can have the 'symptons', but surely when those are treated 'because' there is no actual tumor - vision would surely return? A non-existent growth can probably cause you pain, but I would not have thought it could cause you permanent damage.

[@LilyMeadeBooks]

It really surprised me too! I think it’s the build up of the fluid pressure that damaged some of my visual nerves.

[@nintendy]

@@LilyMeadeBooks That's terrible Lily. It's amazing what the Brain can do... I've always said; the Brain is capable of torturing a person far more than any human!

[@francesgold6649]

Were you taking any medications that caused this?

[@LilyMeadeBooks]

No medicine at the time, no.

[@frankirae404]

I'm a mother of two. They're 7 and 4. I've been in and out of the ER the past month with severe migraines. They believe I may have Idiopathic intercranial hypertension. 😬😬 I'm scared.. and I'm tired of these debilitating migraines 😭😭did you also have spotty vision??

[@esracelik6959]

Seni anlıyorum

[@azimlikz3431]

Bu hastalıkla ilgili çok fazla video izledim ama türkçe yorum görünce çok şaşırdım siz de mi bu hastalıktan muzdaripsiniz benim gibi :/

[@hannahcall9062]

I have this. YEET

[@teasippingme]

Did you happen to have the Mirena IUD? That form of birthcontrol is linked to this condition and there are lawyers that will work on a lawsuit for you if you believe an IUD caused it.

[@nicholereads1086]

I'm looking for a good one!

[@saysHotdogs]

I have this and I had Mirena

[@orthodox2645]

My Lord JESUS heal this problem from you and all .i want tell you one important thing if you pray to GOD and believe your praying work you will be healthy no more pain ever my dear . I do pray too🙏🙏🙏

[@raem.6512]

Girl you should probably be on the meds.

[@lakeishasokoya257]

Rae M. Yes!