Mimi_Jewell

260d

Chiari is so weird it comes up randomly where I feel like passing out... Can anyone tell me what they do to get through it... Talk to family, deal with it alone, take medicine etc.. It's like it's ok for a while and then bam it's like "hey I'm still here" sucks

Amitriptyline

Generalized pain

Gabapentin

Ibuprofen

Chronic Restlessness and Agitation

Arnold-Chiari syndrome

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  • dees

    260d

    I have been dealing with chairi for a year now. Mine hit me all of the sudden. I have every symptom you can think of. I take 3 amitriptyline ( 75 mg) and 6 gabapentin a total of 1800mg. I hear ringing and noise in my brain like how a noisy refrigerator sounds ( that's how I explain the noise 😅) it gets louder throughout the day and if I walk too much talk too much laugh, cry, angry or sad I literally feel it in my brain. I have to lay down a lot!!! I can't work anymore and house cleaning takes all day when before I could get it done fast. Before I could do that,clean the yard, give haircuts,fix my car and go to my mother's and do the same. My doctor has never seen the really bad episodes I was having and still do whatever I do too much tries to tell me I'm not that bad but yet puts me on meds. Its very fustrating! It's hard not to be depressed 😔 but I'm trying to be optimistic and trying to find a better doctor. Sorry I vented😅coffee really helps with the pain. I also drink soda a lot now cause the caffeine helps to get through the day.

    • Mimi_Jewell

      259d

      are you able to get disability for it? Or you have to suffer through it. I hate that it takes everything away from us... are you able to get benefits? Yours sounds worse than mine you have the spina bifida right... either way you've got more than I

  • MountainRoamer

    259d

    I have chiari as well as EDS and POTS. There's a definite overlap. Just throwing it out there for something to look into.

  • dees

    259d

    I tried to get disability but they said no because I didn't make enough money for the quarter. I used to be a lab tech for magnetite but because of COVID I didn't work as much as I used to. I talked with the lady that was reviewing my case and I told her" so if you have a disability you can't get disability cause you didn't make enough money" she said" basically". Everything is about money. I'm going to appeal it let's see. What have you been doing to get through your day? Do you have to take medicine?

    • Mimi_Jewell

      257d

      I don't take meds everyday no.... Head isn't bad anymore to where meds wouldnt even work.. ibuprofen 800 mg every now and then gets me through it

      • dees

        257d

        I'm glad you are doing ok. I got some good insurance this week. Now I can find a better doctor. 🙏

  • dees

    257d

    sometimes I feel alone cause no one understands what it's like. I thank you for listening to my rant. You also let me know how your doing or if you just need want to chat. I'll be here 😊

  • Maryoochki

    244d

    How can chiari type 1 get worse

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