Work and IIH?
Posted , 4 users are following.
Hi, my name is Aimee and I was diagnosed with IIH about a month ago. I woke up one Saturday morning with blurry, double vision and a headache unlike any headache I'd ever had. And I suffer from migraines so I know headaches. This felt like that scene where the Alien attached itself to the minor character's face before it's spawn burst out of his chest, ya know?
Anyway, I went to my eye doctor who found papiledema, so she sent me to the emergency room where I had an MRI and CT scan. They told me I had bilateral stenosis, or narrowing, of my traverse sinus in my brain, causing the pressure to build up. They scheduled a Lumbar Puncture and my opening pressure came back at 49. I felt fine afterwards until a few hours later when I got to the car after discharge and the post lumbar headache hit me like a ton of bricks. I haven't been without a migraine since. That was a month ago. I also have a lot of pain in my lower back, severe fatigue, weakness, numbess and tingling, dizziness, confusion, vision loss, the whole nine yards. I'm currently on Diamox and Topamax but I really hate them. I feel like a dumb zombie.
Before being diagnosed, I was going through a particularly rough time. I had been sexually assaulted, in a car accident, lost my job, attempted suicide, and spent some time in the hospital for depression and anxiety. I was just getting on the road to recovery when I got my IIH diagnosis and now I feel like I am back to square one. I also have no insurance and the medical bills and credit card debt are suffocating. After reading a lot of these stories and doing a lot of research. The prognosis on vision and quality of life doesn't seem that great. Is anyone doing okay? Is anyone still able to work? Im so tired and just can't really afford surgery. I just need someone to tell me it won't be like this forever...
0 likes, 3 replies
sparkleyeyes06 aimeenicole33
Posted
Hi,
I'm so sorry to hear that you are struggling, I cannot give you any advise regarding financial matters but just a bit of hope on the work side. I was diagnosed a year ago and I now take a small amount of acetazolimide and bendrofluamiazide which work wonders for me. I am 29, have a 2 year old son to look after and I am a full time nursing student working weird and wonderful shifts! I have good days and bad days but more importantly the majority of them are manageable! I hope you get some relief soon,
Take care 😊
alexis22653 aimeenicole33
Posted
I normally don’t reply to these conversations, but I’ve been in your shoes before. I was diagnosed around 3 years ago, but started with daily migraines almost 6 years ago. I was diagnosed by my current neurologist who would only take me once I turned 18, which is why it took so long to be diagnosed. I just want to note that my lumbar puncture came out to 29, which while very high, is much lower than yours. I tried many medications, but I am highly sensitive to them. I currently use a TMS machine called SpringTMS, which I have found extremely helpful. I, like you, also have anxiety and depression. I can only speak from my experience, though I hope you find it helpful. In high school, before I was diagnosed, I got so far behind I’m school that I had to switch to an online school. I did ultimately graduate on time, but I definitely struggled. Despite my best judgement, I decided to go to college. It was the best decision I made. I found that luckily - it’s sad that it happens, but is definitely helpful - I got used to the headaches, so I knew how to deal with them and with mild one, could even forget about them when I got focused. I found by doing something that I’m passionate about, it’s much easier to fight through the migraines. I just finished my third year where I currently have a 3.98 GPA. I have been able to accomplish stuff that I previously only dreamed of like having multiple genomes published, creating my own successful psychological experiment, and even researching HIV and Zika. There are good and bad days though. Some days are absolutely amazing and others I just want to crawl up in a ball and die. It’s not easy by any means, but you can definitely still live your life. This condition does not have to be the end. I would say that the most important thing to fight through is finding your passion. I can fight for science, but there is no way I could fight for history. I try to take every day as it comes and get ahead on good days, so the bad days don’t hold me back. I am here for you (even if we both only know what each other wrote). I personally believe that the prognosis is bad because fighting through is hard. It’s doable, but very hard. I hope you find some relief both physically and from your other struggles. Good luck with all your future endeavors.
windy52035 aimeenicole33
Posted
Hi Aimee,
Im sorry you are struggling! It gets the best of us down. Ive had iih since 10/16. Ive had stents & it helped with pressure, but i know exactly the struggles with depression, anxiety, & financial troubles. I was the main provider for my family. Since all this began, i havent been able to work. I have other medical conditions & it just became too much. The emotional part is just as devastating as the physical symptoms. I hope you have a strong support system. Its definately difficult to go through alone. If you dont have someone to talk to, i hope you can find someone. I know that ive needed the support to pull me out of some very dark places. I hope you can get the care you need! Best of luck to you!
Windy