Pseudotumor Cerebri

Community Voices

Storm Pain Distraction Ideas Needed!

Hi. My name is Brandy. I’m 43, and currently live in Phoenix, Az. Today & tonight we had/have a series of rain and wind storms rolling in and out. I suffer from a slew of medical conditions including Arthritis, Bursitis, Fibromyalgia, Pseudotumor Cerebri, Chronic Pain, Ankylosing Spondylitis, spinal issues, and the list just keeps going! I did semi okay during the day today. Did a lot of snoozing’ with my puppy. But as more and more storms come through my pain levels are skyrocketing! I’ve already taken my pain meds, anti-inflammatories, anxiety, and other meds that help me. I’ve done the heating pad thing, the stretching thing, and tried watching TikTok and YouTube to distract my brain from my soaring pain levels. What ideas do you have to help deter my brain until I can get comfortable enough to fall asleep? Thanks in advance!

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MeticulousNoMore @misticals

Formerly Avid Readers?

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danimoorewrites @danimoorewrites

contributor

Coping With Doctors Telling You You're 'Fine' With Chronic Illness

“You’re fine. You should be fine.” These are the words that my new primary care provider said to me after I had dragged myself into her exam room hunched over in pain, feeling like the world was spinning around me. I had given her a laundry list of symptoms that I was experiencing, and she had a “logical” explanation for all of them. “I feel foggy all the time, like I’m here, but I’m not here.” “Oh, you’re just tired. You should get more rest,” she said. “I always get these headaches, and it feels like something is pressing behind my eyes.” “That’s just your sinuses — take some medicine for that,” she replied. “I’m always out of breath.” “You have asthma, so I’ll prescribe you an inhaler,” she claimed. “I feel like my vision is blurry even though it was fine a month or so ago.” “Maybe you need some new glasses,” my doctor said. My doctor thought that she had all the answers, but she blatantly dismissed all of my concerns. I walked out of her office feeling alone and defeated, but I took her advice and made an appointment to see an optometrist. I’d recalled that my kids’ eye doctor had these cool machines that took pictures of the insides of their eyes, so I made an appointment with their optometry practice. The day I walked in, I was greeted with kind smiles and warm words. “If nothing else comes out of this, at least I’ve found an office with kind people,” I thought. The doctor introduced himself, walked me to the back, and started to ask me a few routine questions. As we neared what we thought would be the end of my appointment, he said that he wanted to check the pressure behind my eyes. He turned to me and said in a gentle tone, “I’m glad that you came in.” My heart sank. I had no clue as to what could be going on. Why was my body rebelling against me all of a sudden? He said, “I think that you have something called pseudotumor cerebri. You have a lot of pressure behind your eyes, and you have swollen blood vessels. Most of them are bleeding. I want to take some pictures, do a field vision test, and refer you to a neurologist.” I left the optometrist’s office confused. How could this have happened? What would happen to me? Would I be able to care for my family? However, I was extremely grateful that we were starting to get to the bottom of what had been causing me so much pain and draining my body and mind for the last few months. I sat in my car optimistic about my recovery because according to the doctor, I would only have to take medication and then I’d be “fine.” Here we go with that word “fine” again. Of course, nothing was “fine.” It was just the beginning of an even longer journey. Listen to your bodies, folks. It’s unfortunate, but some health care professionals just want to put a band-aid on you and walk you out the door. If you aren’t getting the answers that you need, find someone else and advocate for yourself until a professional takes notice and does something to truly help you. This may not be easy, but it is necessary. Here’s hoping that you will be better than just “fine.”

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Emma @emmavsiih

First Neurophthalmologist appointment next week... any advice?

So I have my first appointment with a neuropthemolegist (still can’t spell sorry) next Thursday and I’m not sure what to expect. I’m quite nervous and would love to hear about other’s experiences to quell some of my anxiety. The one thing I have heard about this particular doctor is that she is very thorough and the appointment will probably take like 3 hours so... any advice is greatly appreciated!
#IIH #iihwarrior #IdiopathicIntracranialHypertension #BenignIntracranialHypertension #PseudotumorCerebri #IntercranialHypertension #doctorsappointment #Advice #AdviceWelcome

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Essence Easley @essenceuniqueeasley

contributor

What Being Selfish Means When You Have a Chronic Illness

If you’ve spoken to me intimately or follow my story and you’re chronically ill, you’ve probably heard me tell you to “be selfish.” After a conversation with an able-bodied friend who didn’t quite understand why I would tell people that, I thought I’d elaborate. I know this may be an unpopular opinion, but when you’re chronically ill, every little thing in your life can affect your illness. Stress with friends, arguments with family, drama, even being uncomfortable can cause problems with your health. A flare up, a hospital visit, extra medication — all things we dread and don’t need. Which is why when I say be selfish, what I really mean is that we have to be. We may not be able to handle your drama so we can handle our health. We may have to cut you off after repeated arguments to preserve our mental health to make sure we can battle our illness. We may miss small family gatherings to rest. You might not be able to come and stay at our house for six hours because sitting up that long is draining. See, it’s hard for people who don’t have to endure it to understand how difficult it can be to battle your own body. The one thing you’re supposed to be able to depend on betrays you with pain every day. Add on to that normal, everyday stuff, and whew, no wonder we’re exhausted all the time. So if we have to be a little selfish to have more strength to win against our bodies, then so be it. Honestly, in a way, it’s not only for us, but our loved ones as well. Being selfish at times allows us better days and more time to spend with them. So ask people to leave when you need to rest, exit stressful situations, don’t allow anything to disturb your peace, be selfish for you, for them, for your well-being. The right people will understand and if they don’t, they don’t need to be around anyway. Take care of yourself so you can be there for those you love and simply because you deserve it.

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Emily @ejdoodle

Has anyone’s speech ever been affected by pseudotumor? Scans came back normal but one of my drs said it could be possible.

#PseudotumorCerebri

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kimberly jo @peacesignsandafros

Wish me luck!

This week, I had to make the decision to go back to work. I have been waiting for disability for almost a year. I’m separating from my wife and have no source of income so I am forced to put my health at risk in order to survive. How long will I be able to sustain this? This year has been so rough with dealing with new diagnoses, worsening health and surgeries. I just want to be able to take care of myself and I’m scared I’m not going to be able to.
#Lupus #Fibromyalgia #Endometriosis #IrritableBowelSyndromeIBS #PseudotumorCerebri #MentalHealth

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Fylakas Lechsinska @fylakas

Question for #HEDS peeps who have easily tearable skin.

Alright so I finally invested in some KT tape for my joints, as its less bulky for work, which is fantastic and works well. However, no matter how delicately I pull off the tape, my skin ALWAYS gets torn.
Any tips on how to be able to use the tape but not tear up amd further scar myself?
#EhlersDanlosSyndrome #ChronicPain #ChronicIllness #MightyQuestions #JointHypermobilitySyndrome #PseudotumorCerebri

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Fylakas Lechsinska @fylakas

Just Nighttime Thoughts

You know, sometimes I just feel lazy in my pain. I feel so fatigued that I don't make the effort to stop it but rather just wallow in it. But I'm wonder why I even do it. I truly don't have anything to stop the pain. NSAIDS work a little but if I take a lot I get rebound headaches. Cream and lotions do a bit, TENS unit, heat, and ice do a bit. But nothing eradicates it. Because of my low NSAID usage, doctors don't believe I qualify for higher pain medication.
However, like I wonder, why even try to alleviate pain temporarily if nothing works? That's a spoon or two of effort I could save.
Can anyone else relate, or am I just unmotivated?
#EhlersDanlosSyndrome #hypermobileehlers-DanlosSyndrome(hEDS) #ChronicPain #ChronicIllness #MentalHealth #CheckInWithMe #PseudotumorCerebri #Tachycardia #Asthma #IrritableBowelSyndromeIBS #AcidReflux

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Belinda Nelson @belinda-nelson-2

So, I'm Struggling #PseudotumorCerebri #Depression #Fear

Two weeks ago, the eye doctor confirmed that I once again have swelling around my optic nerve. Which, in Pseudotumor speak, means the sh*t is about to hit the fan.
Cue the scheduling of multiple appointments and a slew of side effects from the medication I again have to take.
Don't get me wrong, I prefer the side effects over the "I just want to split my head open because oh, my god, the pain is unbearable" headaches, but it all happens so fast that there's no time to adjust to your new normal, you know?

And then, suddenly, I'm the girl in sunglasses twenty-four-seven, who's trying not to cry because of the pain, and really wishes everyone would quit asking me about it, but honestly, who wouldn't?

So, I grit my teeth and accept a thousand condolences (like I'm dying or some sh*t) and quietly suffer through newly-acquired indigestion, the sensitivities to certain foods, the random tingling in my fingers, toes, nose, and lips-- Oh, and the constant need to pee.

And maybe this sounds like I'm ungrateful or bellyaching just for the hell of it, but you have to understand, I *just* got my anxiety under control and the depression is still there. So, as much as I just want to sleep the day away because then I don't have to deal with the side effects (did I mention the EXTREME exhaustion?), I know I can't. Because if I do, I may never get up again.

Okay, deep breath. This is where things get...hard for me.

And I don't want to talk about it, but maybe if I do, maybe if someone out there in cyberland understands-- Well, then maybe I won't feel so completely alone and lost and...terrified out of my freaking mind.

At one of the aforementioned appointments, my doctor noticed a... pattern, I guess? Which is unusual with my condition. And suddenly, she was talking about how if her hunch is correct (determined by more neurology tests and yep, you guessed it, appointments) there may be a way to prevent this from happening again.

There may be a way... to never experience the pain and horror of Pseudotumor f*cking cerebri ever again.

I was understandably shocked, hearing those words. Almost numb with the rush of emotions that came over me while my mother almost cried with joy and she and the doctor shared smiles.

But me?

I'm not sure how I feel. I should be happy, right? Excited that there's even a tiny possibility? But, instead, I'm terrified.

Because what if they're wrong? What if I do all these new tests and then the neurologist is just like "Oop, sorry, looks like your doctor's hunch was a little off there. You'll still be suffering through this for the rest of your life"?

At least with the side-effect-causing medication, I KNOW it works. I know that when I take the pills, the pain goes away and after 4-6(ish) weeks, I can get back to my life. But with this maybe-but-we're-not-sure sort-of cure? Who knows what will happen? Maybe I'll get better...

But what if, in doing this, something goes wrong-

--and I get worse?

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Coping With Doctors Telling You You're 'Fine' With Chronic Illness

What Being Selfish Means When You Have a Chronic Illness

Feed for Pseudotumor Cerebri