Chiari Online Support Group

I'm so happy I'm not alone

I am a 29 year old mom that was diagnosed with Chiari I in November 2016. I have the awful daily headaches with sensitivities, dizziness, nausea, shoetness of breath and tinnitus to name a few. Finding anyone to take me seriously has been a challenge, but I’m happy I’m not the only one dealing with this condition. You all make me feel like there’s hope in correct treatment.

I have trouble with my eyes a lot. I get blurred vision, double vision and constant pain behind my eyes. I just found out I have some damage to my right eye, and what my ophthalmologist says is early glaucoma (it probably doesn’t help it runs on both sides of my family). He is obtaining a recent MRI to check for papilledema and other conditions.

I finally got in with a Chiari specialist. Only problem - it’s in September. I don’t know if my body can wait that long. I have dropped hours at work to four every two weeks, pretty much the minimum to stay an active employee. I’m a mom of four children, two of whom are special needs. I have a lot on my plate daily, and while I’m normally strong, these symptoms are absolutely debilitating. I spend days at a time on the couch. I stopped taking meds except Botox because simply nothing works.

Needless to say, I’m ready to move on with my life. The constant pain and stress has me in shambles. Hopefully this specialist can help me!

Thinking of you all. :heart:

Hey Mashline,
When it comes to the brain and sensations, trying to find a medico who takes us seriously is one of the biggest battles I had. In fact it took over 20yrs and a major incident before the medicos took me seriously. I was given every diagnosis they could think of from alcoholic to hypochondriac to nut case. I was having all sorts of weird sensations and pain, the dr’s response “…Ohh it can’t be that bad, we can’t find anything, it must be a psych issue…” 5yrs on from the psych diagnosis and I’m driving down the road and the lights went out, couldn’t see anything. Then they did a scan and came back with “Ohh look what we found…” I was so angry, I’d been telling them for over a decade there was an issue but it was easier to label me crazy than investigate and then when they did it was like they had made some big discovery. Then when I queried them I was accused of trying to gain info to sue them. Like WTF, I wanted info on an action plan, not $$$$. But they were only interested in protecting themselves. Needless to say my faith in the medical fraternity is somewhere between very little and nil. Now if they give me a diagnosis I investigate thoroughly and they HATE it, I query everything.
How have you found the Botox? does it help? The Botox did very little for me. Gave me a sexy neck lol but I’d have to walk everywhere backwards to show it off lol.
It can be a very fineline to manage life, headaches and family whilst waiting for the dr’s. Being that I’m in Australia and the medical system works a bit differently down here. In Australia if you need urgent medical you can get it, no insurance required. Our system of medicare is a bit like what you knew as Obamacare. Having to wait and manage symptoms just adds to the stresses involved, so I hope you can cope until you get to see the specialists.
Just know that if you need there are people here who know what you are going through and our knowledge doesn’t come from a book, our knowledge is all first hand experience, so come talk to us.

Merl from Moderator Support

Hey, Merl. Thank you for sharing with me part of your story. 20 years?? That’s way too long! I hate how we’re always considered depressed psych patients when in reality we’re far from it. Have you found good treatment now? I know how scary it is when you lose your vision, but it’s awful that’s what it took for them to take you seriously.

Botox… ah. Well I’d say I guess it doesn’t give me the as frequent “I want to chop my head off” headaches. Not my cure all, that’s for sure. I feel like there’s a right med plan for me, but I’m not yet seeing the right docs to make that happen. Seems like Australia is ahead of the curve, probably more so than here in New York.

Thank you for your help and support. It’s comforting knowing I’m not the only “crazy” one around! I can do all the Chiari research I want between reading articles and watching webinars, but it’s much nicer when I can find others to relate with.

Hey Mashline,
Have I found a good treatment? I have found some treatment options and depending on my issues at the time I do a bit of mix’n’match to manage. I say ‘manage’ what I should be saying is ‘manage the best way I can for now’. I have not found the ‘magic bullet’ and each day symptoms fluctuate so much that what works today may have very little benefit tomorrow. I bought a hydro therapy pool, I have medications (more than I can name), I have a pair of mutts that need walking, so that keeps me physical 'cos I could easily curl up in a ball some days and simply not move. I ‘try’ to keep myself occupied, so I’m not sitting down thinking ‘Poor me’ all the time and I have a very supportive and understanding wife(I truly believe I’d be dead without her). All of these things assist me to maintain some sort of level of sanity (well, that’s what I tell myself lol ). I have at times been tempted to dig my eyes out with a teaspoon as my headaches radiate through my eyes predominantly , but I’ve resisted that temptation so far lol.
I honestly do not think there is one single answer to all of this. It’s more a case of managing the best way we can on that specific day. And sites like this assist me to do so.

Merl from Moderator Support