I have been diagnosed with IIH (idiopathic intercranial hypertension) there is to much pressure on my brain. They dont know why which is why its called idiopathic. I had a cerbal venos stent place in my brain in February. My headaches were better for 2 months now they are back to what they were when i started. Excrutiating pain, (i would have 5 babies instead of this pain) my doctor wants to treat it as migraines and im telling you this is not migraines..they did a spinal tap and found raised pressure still after the stint. No shit sherlock!! I am starting another water pill. Which sucks! And just having a hard time functioning and not relapsing. I find it very hard because i have nothing dor pain except these injections i go to get. They help for 12 hours but i also in a way "crave" them because it kills the pain. I have been dealing with this for 6 years constantly in pain. I have a very high pain tolerance but the headaches now are taking me down and out for the count. Somedays i feel like it would be better just to let go. But at the same time i cant do that because I have kids and couldn't do that to them or my husband. He has been my strength through all this. Tomorrow i start a new pill...again! To try and help. Idk what im trying to gain by telling you all this...maybe i just need to vent. All I want to do is sleep and kill the pain. I'm very scared about relapsing and also can't help but wonder if what i use to do is now considered as "karma" now??? This diaghas also given me memory problems. I have also been told there are abnormalities in my ways of thinking so now i go in for more testing because of that. Im tired....im tired of being poked with needles, im tired of being told what this is not... im tired of hearing well we could do this. Fucking fix me please just fix me. I lride my self on always being different but just this once I want to be "normal" i am tired of being in chronic pain. Im tired of being knocked out from injections. Im tired of going to the fucking doctors. Im scared. Im depressed. Im tired. If you read this all the way through thank you and I appreciate you!! Thank you for reading my venting session.
10 Things I Want People to Know About Mental Illness
Part 1 of 2 May is #MentalHealth Awareness Month and as someone who has been battling, and sometimes winning with #MentalHealth, here are 10 things I want people to know. It’s not by any means an exhaustive or extensive list, but it does lay out what I’ve learned and continue to advocate for.
1. #MentalHealth is a Medical Condition.
Yes, it’s the brain that is trying to cope with chemicals that are not being produced or are missing. If we understand this, then number #2 will make sense.
2. For Some Individuals, Medication Is Necessary.
We have come a long way to reduce the stigma of needing to take medication to help our brains stabilize and regulate, but we’re still not there. If you were missing insulin, you would take it. If you were suffering from #Hypertension, you would take meds to help with that.
Medication for the brain is the same. If you need it, you need it.
3. Language Matters.
When someone says they are “depressed,” it doesn’t always mean they are clinically depressed. #Depression is a #MentalHealth that can be clinically diagnosed and affects the brain, its functions, and the body as well. We all can feel sad about something but that doesn’t mean we are depressed. Leave the terminology to the people who actually need to use it to describe their clinical status.
4. #MentalHealth Can Take Lives.
Yes, it can. I don’t know why we need to hide this or be embarrassed to talk about it. I’m no longer embarrassed to say that I have been suicidal or that I fight this still. The more we start accepting that people feel this way because they cannot control what is happening in their brain, the more we prevent people from being isolated and alone- which means we are saving lives. #MentalHealth can be so insidious and dark, that it will literally suffocate someone. If talking about it and getting people to talk about it saves lives, then I’ll yell it from the rooftop.
5. So Many People Are Carrying Heavy Loads We Cannot See.
I know there are great people out there doing great things like curing people, making products to better our lives, and winning medals. But let me tell you who I think are the most amazing beings- those fighting #MentalHealth. They have to endure day after day a slew of symptoms that they don’t want and sometimes you’ll never know how much they’re carrying. Yet, they wake up everyday knowing that tomorrow will be better and that there is hope. They fight their own internal rhetoric that they know is trying to bring them down, and they fight through everyday tasks that seem so easy for others. Things like taking a shower can be a triumph and eating a meal can be life saving. Imagine waking up with the flu everyday and having to fight to go to school, to work, or family functions, all while putting on smile? The amount of masking individuals with #MentalHealth have had to endure is mind blowing and although I hate to use the word resilient, I don’t know a group of folks who deserve this title more.
6. Universal #MentalHealth Care Now.
How do I say this any louder so that we actually do something drastic to change things? We have a heart problem, we see a cardiologist. We have a kidney issue, we see a specialist.
We have a broken leg, we see a doctor.
If we have a #MentalHealth we need psychiatrists and #MentalHealth practitioners. Yes, #MentalHealth is health, so then everyone should have access to covered #MentalHealth clinical supports. No apps or on line webinars will take the place of clinical supports, OK? They may help a few but for God’s sake would we be telling heart patients to fill out info on an app to get medical attention ?!
7. Therapy is Necessary.
I don’t know why we think that talking to someone to help us figure out how to best help ourselves is optional. I’ve learned to cope, uncover, gather information, empower myself, and learn to heal by seeing different therapists. It’s a personal thing so finding the right one is important
Undiagnosed, trying to navigate the healthcare system.
I've been trying to get answers about what the hell is wrong with me for so long I am starting to lose hope. Growing up my parents thought I was just a hypochondriac. Then when I was able to start going to doctors visits on my own and was diagnosed with #PCOS at the age of 15/16 I finally had proof that some if my symptoms were real.
I was finally diagnosed with #mitral vavle prolapse at the age of 26. Turns out that I've had it my entire life but no one cought it until just recently. In addition to the mitral valve prolapse I was also diagnosed with #CongestiveHeartFailure #rectocele #vaginismus #lymphadenopathy #BipolarDisorder #Hypertension #Sleep apnea and #PelvicFloorDysfunction .
I also fit the criteria for a lot of other conditions but I'm having a hard time getting clear answers from my doctors as to wether I do or do not have these other conditions.
Does anyone else find it difficult to actually get a diagnosis from their doctors? Even when you meet all of the criteria for such diagnosis?
My current issue is that I'm trying to get in to see a geneticists to get tested for #EhlersDanlosSyndrome and other connective tissue disorders. In order to do so you have to provide a lot of documentation showing why you should be tested for genetic conditions. Part of this documentation would include the conditions that you've been diagnosed with. But since I have not gotten an official diagnosis for many of the conditions I suffer from I don't have a way to include them in the documentation to send to the geneticist and I have been denied an appointment twice now.
It's like a puzzle. I need my doctors to help identify the missing pieces so that I can go to the geneticist and have them complete the puzzle but I am so tired of having to push and push and push to try and find doctors that are willing to run the tests and not just give up before the missing process are identified.
Why is the process so difficult? On top of it all I have suffered from #Undiagnosed #ChronicFatigue for the past 8 years and I just don't have the energy to continue fighting. But if I don't continue fighting then I'm only going to continue to decline. It's a never ending loop.
Ambien good or bad
I have fibromyalgia, RA, raynards desease, major depression. High blood pressure and lupus. My other half says I’m addicted to ambien and need to find a new drug. He said that about all my meds so I stopped taking all of them. So I’m raw dogging all the deseases and wondering when will be the day it all will stop. What are your thoughts on this. He feels how I feel is from the ambien. Ambien let’s me have 2-3 hours of a break of my pain. I don’t know what to do. Help
Heavy pain/headache for days sore neck/shoulders ect.. ?
Hi haven’t posted in here for a while as my IIH has been great for the first tome in forever! Lol 🙌🏼 ☺️ I was started on Candesartan medication for high blood pressure months ago at the RVI which really helped with my migraines ect.. but the past 4/5 days I’ve been in agony if I’m honest just a really heavy feeling on my head especially at the back as if someone sitting on my head down my neck across my back just feels so sore heavy and generally achy, it’s like the top of my head downwards.. and just won’t seem to go away, my eyes also feel so heavy and weird (which this all sounds a bit weird ha but.. 😮💨😖 x
Nowhere to go from here