5 day long headache should I go somewhere?

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Hi I was told in 09 I think that I had a chiariuk type 1 I forgot the other details as my clinic didn't really tell me more, so everything I've learned is from the web, which is quite scary. Anywhooo im currently having a headache episode which seems to be going into day 5 tomorrow as it's night time now. I can't sleep as I turn and try and adjust my neck all night and then lately throughout the day I get dizzy/headache kicks in pretty tough... should I go somewhere? And where urgent care? Primary care? Does ice or heat or what type of treatments that are non NSAID meds can I try? Thanks

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14 Replies

  • Posted

    hi I have chiari and have had the op, my daughter has recently also been diagnosed and has seen a neurosurgeon and discussed no op at the moment but she is under a neurologist and has just been put on beta blockers (propanol) book an appointment/or get referred to discuss. Good luck 
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  • Posted

    Hi Ozzy,

    My suggestion is..I would go to A&E or call ambulance to get attention more quickly..I have been speaking to lots of ex chiari patients..majority of them feel better after decompression, one of my specialist told me that if I had listened to the advice given by Neurologist I would not damaged my nerve..I left it too long for the operation...so..depend where you live..some part of UK they do not understand enough about chiari..so perhaps if you read more on the website..you will be able to participate on discussion with your health care professionals..but my opinion is get them to refer you to the best neurosurgeon for operation because there is no medicine for chiari..it is not disease it is defect condition..that need to be repaired..I am a successful chiari patient..and have drug free now..but it took me several months to heal after decompression.

    It will get worse ..(not trying to scare you..) the time goes by..the worse it would be..get it done as soon as you can.

    GOOD LUCK

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  • Posted

    Obviously if your headache is that awful I would always go to A&E.

    My specialist was Mr Vindalachuru from Romford. Excellent 

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  • Posted

    Thanks for the replies, the more I read about this recently the more I'm definitely considering the decompression thing. My current insurance sucks and I am starting a new job hopefully soon with better insurance so if I can tough it out 6 months to a year in I might look into that. My headache when I woke up today was pretty bad but I haven't taken anything and for now it's doable.  I live in Oregon US, and we have a chiari center locally I think I'll research more.  I think the visit to the chiropractor  2 weeks ago, who did my first ever 'alignment' might've made things worse head ache wise too but idk. 

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  • Posted

    Hi Ozzy, its true..get more information for your own good - also call some organisation about chiari such as:

    Chiari Fund 

    ''" I am so proud to have the opportunity to serve the Chiari community. The vision of the organization came from my own experiences with having Chiari, Cranio Cervical Instability and Tethered Cord. I have seen first-hand how many people need help in obtaining the appropriate care they deserve. Money should never be an obstacle for anyone to receive the best care and see the best doctor to take care of their condition. I saw this as a void in the community and thereby Chiari Fund was born." contact number o Contact Us By Phone Please Call: 704-831-8229 .

    I am sure if you google it you will find lot more help...talk to as many people if you can..just to be sure...

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    • Posted

      This is good stuff! I will definitely look up chiari fund and take note of that # thank you. 
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    • Posted

      Hi Ozzy,

      I am glad you find this useful - please share with others - I feel so sad when reading some US's chiari patients I hope your insurance will cover - if not at least you could ask this organisation to help you with the funding...let us know how you are getting on..explain it as well to them that..you are a member of this community and if you are succesfull (getting help from them) you could share it with all the members around the globe through this community. God bless and GOD with you

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  • Posted

    Hello Ozzy24,

    What kind of headache do you have ? how does it feel..

    Dont go to chiropractor if you have chiari

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  • Posted

    Hi there, I'm not going to be much help I'm afraid, as I'm in the UK and everything is different here.

    All I wanted to do though is just warn you not to go to a chiropractor! It's really dangerous for people with Chiari, and there are documented examples of people herniating another 8mm in a space of 6 months because of treatment by a chiropractor!

    Hope you get the help you need soon! I'm 5 months post Op and still (slowly) recovering. I still have a lot of problems but all in all there had been a good improvement. I would definitely recommend surgery because although it's scary, it prevents further nerve damage and plus, you're never gonna be any younger than you are today... And as you get older, surgery gets harder to recover from. Good luck!

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    • Posted

      Hey you are right on gettin it done sooner vs later, I appreciate the comment. And yeah I asked the chiropractor if he was familiar e chiari he said yes but then at his office I tried to explain it and he had other thoughts on what he thought it entailed by then... too late and then he aligned my spine which made it worse I think. Ill probably try and get an MRI done soon since it's been a few yrs since I had one and to mke sure everything is okay. Good luck with your recovery! 

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    • Posted

      Yep. I researched, I realized I did not want to be blind or deaf or paralyzed. And It took away all spine into hip pain because the neerves and the spinal fluid are no longer under such pressure!  Thank you Kerenza!

       

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  • Posted

    MY Chiari was a 1 in 2010 then progressive 2-3 by 2012. Then 3-4 2015. Then 5-6 plus 2017. I would say go see a good Neuro Surgeon but you need a referral from either emerrgency room or your regular Doctor. Ihad many migraines BEFORE DIAGNOSIS. I couldn't sleep, then sleep apnea, finally affecting my legs and arms.  NSAIIDS worked for me the best. (reduces inflammation). Also muscle relaxers sparing.  I got dizzy easy and my blood pressure drops I think all related. You want to go get it checked to see if it got worse. A regular Neurologist DID NOT HELP ME and infact hurt my condition by not understanding Chiari. Know your Body. Ask your Doctor where to send you and research online to know who you want to go to that works for you. I have  complete faith and trust with my Nuero team!  Sometimes Cold worked for my head aches. Later after surgery heat helps my pain. Weird huh. God BLess you. Go see your  Dr. soon

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    • Posted

      Also great info! I do have some hip pain as well as arms legs lower back, I didn't know it could get worse, though i guess that makes sense if untreated.  Now I def want a MRI to see what's goin on. Everyone who's replied to this thread is appreciated thank you all.

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