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My Lonely Brain Lipoma

Hi, I'm looking for others who have this rare type of benign brain tumour. What are some of your symptoms and what has been your journey in getting help? I have a lipoma in the middle of my brain and have headaches, limb weakness and some other issues but can't find anyone to relate to and it's lonely being part of the 0.1% thank you 🤕 #BrainTumor #braintumors #SeizureDisorder #neurology


My Lonely Brain Lipoma

Hi, I'm looking for others who have this rare type of benign brain tumour. What are some of your symptoms and what has been your journey in getting help? I have a lipoma in the middle of my brain and have headaches, limb weakness and some other issues but can't find anyone to relate to and it's lonely being part of the 0.1% thank you 🤕 #BrainTumor #braintumors #SeizureDisorder #neurology


Christmas morning seizure

Ranting with my chin up: Being sick is confusing and frustrating as heck.

So it looks like I had a very classic seizure at 3AM on Christmas morning.


That's actually not much of a surprise. I'm actually rather used to being told that I *might* be having seizures. I have weird neuro symptoms very often and fall on the floor pretty regularly. I have had a real talent for doing that when nobody is around or everyone is distracted. I'm not around either. I'm unconscious.

I have then been given tests and told I am not having seizures (or the worse things: brain aneurysm, stroke, brain tumor etc.) about a bajillion times. This time was different because my wife saw it happen and was able to describe it. Apparently it looked really identifiable. I don't know. I was unconscious.

We still don't know what is causing me to do this. We have not confirmed the seizure. It's at least a good theory this is a seizure and I have been having them for a while.

Over the years I have been told over and over that various bizzare things are "probably a migrane" or "sometimes people just pass out" or "It's probably dissociation." My mental health is admittedly pretty rough.... I have chronic PTSD and a dissociative disorder. I also accumulated a lot of concussions and other vague things people get when life gets rough. A lot of things about my brain in particular have been seeming about a quarter borked for most of my life now.

This time when I fell on the floor somebody was able to describe what happened and my regular GP doctor is like "Oh! One of those!" Apparently the tests that have been done on me, in the past, don't detect seizures unless one is happening at the time of the test, which one was not. I was usually being tested a good while after whatever was over.

It's not usually practical to test someone during an emergency that happens randomly and lasts minutes, at most. Fair, but nobody told me that these would not actually measure one of the things people said they were supposed to be intentionally looking for. The doctor reading the results just said: "We don't see anything. You are good to go now." That does not fix the symptoms. I have totaled cars doing this stuff, luckilly not going fast. Still! It's not good!

Does this put me on the path to maybe not feeling like a medical mystery any more? I don't feel like counting my chickens yet. I don't really feel like running my wife's description by a GP really counts as a diagnosis. I'm supposed to talk to a neurologyst. I don't know if they are actually going to tell me anything that pertains to the other weird stuff that's going on, or do anything more than just try and decide if I need an anticonvulsant.

We didn't go to the ER on Christmas morning because hospitals are not at their best on hollidays. We didn't want to spend Christmas there anyway, and I was tired of being told I'm not on drugs (I don't need a doctor to tell me that!) and still don't have something that's going to intimately kill me, so: "It's fine. Right? Go home." Apparently the ER staff might have been able to figure some stuff out based on my wife having seen what happened, but we didn't know that at the time. Sooo... I'm probably in for more tests... Hopefully not the kind that don't catch the thing if it doesn't just happen to happen!

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I’m new here!

Hi, my name is spaceechidna0950. I'm here because I lost a 22 year old son to a drunk driver. my other son has had 2 kidney transplants. and I have brain tumor

#MightyTogether #PTSD #Anxiety

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I’m new here!

Hi, my name is 3nightlyprayers. Hello. I don’t know where to start I am a Father of 3 wonderful children, one has a brain tumor, and one child is type 1 diabetic , and my 3rd child. I live in a world where you always second guess if you’re doing the best you can for your children. This is why I’m here I lost my father a few years ago and my Mother is not doing so well nowadays. My story is a long one. I wasn’t certain what I should say here. I go weekly to be with my Daughter during her treatments.


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Will I Ever Find Someone Who Loves Me? #Relationships #Autism #Depression

My girlfriend just broke up with me. Things moved fast. We moved in together. She has her own slew of mental health issues, but I never judged her. I helped her get her fibromayalgia pain under control. And then, I started to hear what everyone tells me. You’re around too much (I’m on Social Security Disability and can’t work). You’re too sensitive.

After having lived with my parents all of my 33 years on Earth, I got my first taste of what being independent was like. And for a while, I felt what having someone who cares about and loves you feels like.

Now I’ll have to move back in with my parents who are often cold, distant and unloving. The group of friends I made through her I don’t think I can bring myself to hang with. It would just be too awkward. So I’m right back in the dark. Forced to either find some awkward way to meet people like library events, or shut myself back in my room and play video games all day.

What’s the point, I keep asking myself. Maybe I was always meant to be alone. Is it so bad to not have any friends. Or to be single for life?

There’s more to my story. Just briefly, in addition to my autism I’m also a childhood brain tumor survivor.

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Life with chronic illnesses

Hello my name is Jen. I’m a mother of two adult sons and a wife to an amazing husband of 20 years . I have been sick since I can remember but when it all began was when I passed out at a funeral when I was 12. I saw my pediatrician and after complaining of excessive headaches and nosebleeds they did a mri and found a mass in my nasal pharnx area. It was removed and thankfully benign. But after that everything went down hill. Off an on strange symptoms for many years. Ranging from rashes , losing the ability to use my right side , passing out, needing iv therapy weekly for months , severe growing pains, loss of vision in right eye episode , at 18 was dx with degenerative disc disease of my entire spine . Dx with raynaurds in my teens. Then came a dx of MS at 19 while I was pregnant with my first son. After that it was all down hill. Spending a lot of time in and out of the hospital seeing all kinds of doctors endless tests . Surgeries . Thyroid and gallbladder removed . Dx so many diff things the list just kept growing . But never any rhyme or reason. Medications , feeding tubes, pic lines, ports , sepsis, bacteremias , just seems to never end . But here I am 44 and still endless tests , more dx’s, more hospitals stays , infections , flare ups. Difference is I’m weaker due to more time in bed due to more pain which leads to muscle wasting , weight gain, depression ofcourse I’m stuck inside all the time who wouldn’t be depressed . Keeping it real. Our son was dx with a brain tumor at 17 and has had two major brain surgeries , they were able to remove it all and he’s doing well. He’s a fighter so strong. He suffers from epilepsy really bad since he was dx with the brain tumor. They finally just got the medications right and he’s not having them as constant now. But as a mom you want to be able to be there for your children and it’s hard knowing I can’t physically . Thankgod for my husband and his girlfriend . Other than that this is my life. At least for right now🙃🙃🙃🙃

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Needing change and finding people who see love in different situations

I have had a lot going on in the last year or two (especially lol). I always have as I have chronic health issues: NF1, chronic pain, migraine, asthma, major depression, and generalized anxiety. I have realized that I endured events that were traumatic but didn't want to label it as such at the time. But I was having a conversation the other day with my therapist and they told me that I need people in my life who see the love in everything. That really hit me. My parents have always seen the love in everything. However, I realize that in past relationships the people haven't always seen the love in everything. And I need more of that as I try to do that for other people. I need people that are accepting and understanding of me as a whole, imperfect person and my health struggles. People that show up consistently. I don't know anyone with NF1 or chronic pain and would like to make friends with them. I'd like to make friends with people who see the love and hope in everything, even in the worst situations. So this is sort of an invite for conversation. And I'm curious how have you cultivated relationships with these individuals or with individuals that have the same conditions as you? I look forward to hearing what everyone has to say and hope you all are having a good day! Thank you 🙂

#NeurofibromatosisType1 #NF1 #Neurofibromatosis #braintumors #ChronicPain #Depression #Anxiety #Asthma #Trauma #change

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Few things to know about Depression


Depression (major depressive disorder) is a common and serious medical illness that negatively affects how you feel, the way you think and how you act. Fortunately, it is also treatable. Depression causes feelings of sadness and/or a loss of interest in activities you once enjoyed. It can lead to a variety of emotional and physical problems and can decrease your ability to function at work and at home.

Depression symptoms can vary from mild to severe and can include:

-Feeling sad or having a depressed mood

-Loss of interest or pleasure in activities once enjoyed

-Changes in appetite — weight loss or gain unrelated to dieting

-Trouble sleeping or sleeping too much

-Loss of energy or increased fatigue

-Increase in purposeless physical activity (e.g., inability to sit still, pacing, handwringing) or slowed movements or speech (these actions must be severe enough to be observable by others)

-Feeling worthless or guilty

-Difficulty thinking, concentrating or making decisions

-Thoughts of death or suicide

Symptoms must last at least two weeks and must represent a change in your previous level of functioning for a diagnosis of depression.

Also, medical conditions (e.g., thyroid problems, a brain tumor or vitamin deficiency) can mimic symptoms of depression so it is important to rule out general medical causes.

Depression affects an estimated one in 15 adults (6.7%) in any given year. And one in six people (16.6%) will experience depression at some time in their life. Depression can occur at any time, but on average, first appears during the late teens to mid-20s. Women are more likely than men to experience depression. Some studies show that one-third of women will experience a major depressive episode in their lifetime. There is a high degree of heritability (approximately 40%) when first-degree relatives (parents/children/siblings) have depression.

You can refer to this: