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looking for some ღ

Posted , 4 users are following.

Megsrayne12212
Megsrayne12212

I'm Meg, a 31 year old female, I was diagnosed with my chiari after having a stroke 4 years ago. After a year of intense pain and migraines they finally decompressed me. Here I am again, 3 years post op, I have had a non stop battle with uncontrollable pain and these migraines that are undescribable living at the base of my skull that radiate up into my ears and down into my neck. Most of the time I can't walk, let alone put my head down on the pillow. Fetal position with a heating pad has become the best thing since sliced bread around here. Yet the doctors keep throwing meds at me like they are candy and they might as well be because the medication doesn't do anything besides give me adverse reactions to it, like eating too much candy does.

Most of the time I feel as tho the pressure in my head is so intense I could probably take down a house. Because of the pain and the stroke I'm out of work, and have been for some time now and without insurance so they won't do an MRI to rule out any chances of needing to go back in for more surgery.

I'm at my wits end and am looking for others that know the same pain. Not that it makes it better, but there is a comfort in knowing someone else understands what your going thru. No one around me does, the term normal migraine turns my stomach. I'm just reaching out for support. ღ

Just to post something positive so this isn't all negative, I have 2 amazing kids that have been my life line thru all of this. They are my world and for fun we laugh, read, draw, listen to music softly, and we love making up little thoughts together and putting them into a story. I have an amazing boyfriend, he has been by my side for 3 years and he hasn't left. The first few years are supposed to be the honeymoon years, he got the old lady years and he still loves me more and more each day. I'm keeping him! Also I tend to be funny and tell jokes, but just between us that's just a mask to cover up the pain. I can slap on a smile and a joke to anything. I'm glad I found this, I hope everyone has a great day.

ღ. Meg

0 likes, 3 replies

3 Replies

  • jennacyde
    jennacyde Megsrayne12212

    Posted

    Please join our Facebook support group. We are like family, all Chiarians welcome :-) Look us up Chiari Malformation - The Struggle is Real. When was your last MRI and NS consult? could be scar tissue build up and you may need another surgery. ((hugs))
  • helen11122
    helen11122 Megsrayne12212

    Posted

    So sorry to hear your still in pain. I had decompression over a yr ago and still have dizziness and bit nausea. The pressure in head is starting again and get a few head aches, but consultant says he is happy to discharge me. It's good you have someone around you that keeps you going. Hope things improve for you hun x
  • b2wc97455
    b2wc97455 Megsrayne12212

    Posted

    Hi Meg, I am sorry to hear about your trauma, I suppose maybe you need another op. Have you ever tried massaging your neck and skull (where you feel hurt) with virgin coconut oil mixing with magneisum oil each night? I stopped with all my medication, as they didn't help me at all, I live in the UK eventhough all the health care professional are excellent they tried to help me, but they really have not have awareness yet about thi condition, I am going to have second opinion whether he think I should have the op or not, i m unable to walk properly nor dirve anymore, I stopped working last year, I sometime collapse, but I try to do walking each day just to make sure my nerve and muscle are not tense, also having warm shower (mostly behind ears and occipital) help a lot to reduce pain..dipping in epsom salt also help..i sometime cry because the pain is just unabelieble but we have to think positive, stress can make it worse (I gather) this is mechanical condition, taking supplements such as; grape seed extract and omega 3 (fish oil) also helping me a lot as the grape seed extract provide anti oxidant and giving extra flow on our circulation and its good for the brain as well as omega 3 oil, but make sure if you take supplements buy them organic /natural dont buy the cheap one they are normally synthetic which is no good (GOOGLE IT - PUT NATURAL OR ORGANIC FROM ANY HEALTH SHOP) THEY ARE QUITE REASONABLE PRICE. Drink plenty of waters - 2 lts a day, stop consuming food that contains : glutten; nitrate,msg. reducing of buying process food, fried food, BBQ (directly with charcoal), eat plenty of vegetalbes, fruit. Reducing the intake of soda (such as Coke, fanta etc) alcohol, since I have done it, after 2 months..my pain start reduce..now and then I have got severe pain...but at least I can bend down..I can walk and I can swallow my food, before I was so bad , I couldn't even sleep as the pain was excruciating.. so..it has been working for me..you can try..see what happen..it take a lot of determination though..I just tired of being ill and keep relying to my loved ones..so I try to help myself..by doing this..I help myslef annd also help people around me who care so much about me so that I dont depend to them to much.

    i hope this help you.

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