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 Newly Diagnosed With IIH

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Tlthomas95

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PostSubject: Newly Diagnosed With IIH   Fri May 11, 2018 7:08 am

Hello all.. 23 y.o female here. Just recently diagnosed with IIH over the past 6 weeks. Might I add it has been a very terrible 2 months for me. Let me start by saying that I had started to have increased headaches over the past year. I just brushed it off... What got me was 2 months ago I had started to notice my vision getting worse. One day I was at work and I had gotten the WORSE headache of my life and on my way home from work that is when the double vision started. Other changes in my vision include moments of fuzzy blackness, flashes and floaters occasionally. The headaches and my declining vision left me on my couch for 3 days. I had also noticed some ringing in the ears which I still have. Finally my husband forced me to go to the hospital where they did a CT that they said was normal. The ER docs suspected IIH at that moment but did not give me a diagnosis and told me to go immediately to my opthalmologist the next day. At this appointment the doctor looked aty eyes for a split second and expressed serious concern about the amount of fluid and swelling of my optic nerves. From there he said there was nothing he could do for me and sent me that same day to a retina specialist in Cleveland, OH. At the specialist I had a series of tests and was there for hours until the opthalmologist told me that they could not help me and I needed to see a neurologist because of the condition. So a week after that (about 6 weeks ago) I went to see the neurologist. While I was there they did more tests and confirmed the diagnosis of IIh. They sent me for an MRI and MRV about a month ago. They called a few days after and said that my MRI and MRV looked really good and that I could be scheduled for a LP in a few weeks. So that's what has been done so far. No LP yet, no medication or treatment... I'm still suffering with the symptoms day after day with no relief. I also have this new symptom that started about 2 weeks ago of nerve "pain" in my arms and face... Kind of just tingly. I read that this has happened to others. Anyone else in the forum have this symtom? I heard it is called radicular pain?? And also does it normally take a few months to get treatment? I feel terrible every day without relief from the headaches and the vision changes are still here... I just want some relief..
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medmisfit
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PostSubject: Re: Newly Diagnosed With IIH   Fri May 11, 2018 3:32 pm

Welcome to the forum! And, yes, unfortunately it can take even longer than a few months for people to get treatment. It is a frustrating and exhausting process, but it does seem like they're making appropriate referrals and doing all the right tests. I am surprised that the ophthalmologist or neurologist didn't at least start you on medications to reduce the fluid build up and help with pressure. Maybe they wanted the LP first so it would be more accurate for diagnosis, but I'm sorry you're suffering!

Your symptoms do seem fairly typical and I also have the numbness/tingling. Usually it's in my face, but I get it in my hands and other places depending on how bad my headache gets. There are some things you can do at home to help relieve some of the pressure and discomfort. I find that laying on my side and propping myself up with pillows at 45-60 degree angle helps. It's a bit of trial and error to find your sweet spot, but it does reduce the pressure. I also have an eye pillow. I had to play with the content and weight, but it's made of satin so the coolness and little bit of weight provides much needed relief to my sore eyes. A cool, damp cloth can also help. I use a heating pad at the base of my neck, but others prefer cold and mentioned placing a soda can there. I know caffeine is supposed to be used for low pressure, but you also may try it if you feel a bad headache coming on. Stress and muscle tension can bring on other types of headaches, so it can at least take the edge off some times if used sparingly. Also, try to avoid processed foods because they cause inflammation and contribute to pain. I hope you find something that helps until you can get the LP. Luckily, you should get fairly immediate relief once they remove some of the spinal fluid. It only lasts a day or two, but it helps! Plus, they'll hopefully start a medication at that point to help keep your fluid levels down.

Feel free to check out the site and let us know if you have any further questions or concerns. We'll do our best to help you through it!

Take care,
Julie
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Tlthomas95

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PostSubject: Re: Newly Diagnosed With IIH   Fri May 11, 2018 3:56 pm

Thank you so much for your reply! I will try all of those things. It is good to know that others have gone through this and that I am not alone. My husband hardly understands what is going on with me. He thinks that I'm being lazy because alot of days I just lay around because I'm so uncomfortable and can't find any relief. It's just good to know that others go through it as well and I'm not alone in this. I'm happy to have found this forum!
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medmisfit
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PostSubject: Re: Newly Diagnosed With IIH   Thu May 17, 2018 9:01 pm

Absolutely, we've all been there! Let us know if you find anything that helps.
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