Diagnosed in the last six weeks while seeking cause of those awful headaches.. Waiting for reading of report from second MRI. I am learning so much from your reports. I have been having UTIs since early 2014, with some very bad consequences and misdiagnoses of early ones. I am wondering if some other fairly recent circumstances, ie: one drooping eyelid with twitch, hand tremors and one stiffness in a leg could be connected. Anyone have any idea about those. Most of you sound very young and I am 82 so don't really plan to have surgery unless the headaches develop to long periods of time. Has anyone started with short periods from cough, etc., then develop to long term headaches.
Thank you for posting information. I am so glad to be learning from all of you.
You might want to be checked for hydrocephalus. I have it and my neurosurgeon said that it is not that uncommon with chiari. Be sure and have a neurosurgeon check the films.
Im 46, I was diagnosed with chiari 2 yrs ago following an accident. The pressure headaches are often caused by blockage of the cerebral spinal fluid csf flow in your head. In my case I have a blockage on the right side but I am not going to have decompression surgery. The many symptoms vary from yes you said it headaches from coughing, stiffness & spasms in legs, numbness of the extremities, just to mention a few. After much research and experimental medicines & procedures that did not work for me but only made it worse, I decided to go the healthy route. I am on supplements of enzymes, magnesium etc which is working amazing for me now for several months. The main problem with Chiari patients is inflammation, we have to bring the inflammation down. We have to drink a lot of water, I drink coconut or aloe water it’s the best for hydrating you. The enzymes helped control my symptoms in fact the inflammation has gone down. I have improved with my symptoms. My neuro couldnt believe how well ive been doing. Also monitor what you eat make sure your food is healthy and organic if possible.
God bless you and feel free to email me if you want to reach me.
It sounds like you were blessed most of your life not to have any symptoms from Chiari malformation. Wow. We are born with it, so you always had it, just no symptoms. Once headaches come they are awful. Absolutely awful. I was certain I must have brain tumor when I was getting my 1st MRI done at 21. And once headaches come they don't decrease unless it is a migraine (some of our headaches are and they can be handled with medication) . Some see improvement with surgery. I did not have surgery. Doing all right, there are bad weeks and even bad months and then I feel better again. 14 years like that. Sorry, you have to deal with Chiari pain now. And yes, eye and leg problems you describe could be connected.
Hello, thank you all for this post, I was diagnosed with sleep apnea in 2013, my symptoms were high blood pressure anxiety, dizziness, leg cramps, fatigue, after using the C pap machine for a short while with no success, I finally asked to have a head scan, and that’s where they found the Chiari 1, I have no leakage no headaches no pain, but my days are filled with all these symptoms that I listed, some days less some days more, I never know How I’m gonna feel, I have been this way for 27 years, i always thought I had something else and never went to the doctor, when I finally went, I had high blood pressure, with medicine and diet I got it under control, but the symptoms still remained, but less bearable.
CiCi Just recently my eyes have begun to shake not twitch, and leg cramping at night also. I’ve been reading allot of these posts and no one has come close to what I have till today, I almost feel unqualified to have chiari cause I have no pain due to head aches, thank you Jozy, Ada, Carol and You CiCi for sharing. I hope their input helps you out too CiCi.
I experience a lot of what you have described. I am still in the diagnostics process, but have been suffering the droopy twitchy eye for at least 6 yrs, that I can remember, (my memory is awful lately) I also remember having my first issue with coughing about 10yrs ago. Does is feel like a blinding white hot pain with muscle constriction when you cough that lasts about 60 secs or so? Have you experienced the "sparkling" numby feeling in your arms legs or face? I know that over time my headaches began to build on them selves and now they are pretty constant. Bad days tend to morph into severe migraines and balance issues as well as a laundry list of other seemily bizzare symptoms that come an go like agry ghost! I wish you much luck onyour journey!!
Hello! Welcome! I’m new here too. I’m not real sure about anyone else but I have had weakness on one side and tremors. I’ve had the refered headaches for years. I have pressure most of the time that flares up into headaches with refered pain on one side. My headaches can cause the head pain but they actually originate from my neck. I have found that sometimes putting a covered ice pack on the back of my head/neck can help with the headaches. Sometimes I can twist my head/neck in a certain direction where it provides a little relief while held int that position and sometimes the only way to cope with them is laying down and sleeping. I may have cervical instability which will mean even if surgery is the only way to correct it, I will not qualify for it due to the instability so it’s live with it and manage the symptoms as best as possible so I can relate to your position of surgery not really being a consideration for you as you are blessed in years.
I would be hesitant to jumping to chiari as the cause of your symptoms with absolution until you receive a thorough work up and am glad to hear you already are pending the results of your second MRI. Where as it is easier to lean toward chiari as the primary cause in kiddos, in someone with your wealth of experience in life, there can be overlapping conditions such as arthritis or disk involvement or a whole array or conditions that crop up with time that can also cause the same symptoms and so I am happy to hear you are undergoing a thorough work up. Chiari can be a diagnosis of exclusion meaning if they don’t find any other better reason for it, then it maybe able to be safely attributed to your chiari but the tests they are doing now should help sort that all out. Like if you have syringomyelia or hydrocephalus so at the moment your kind of in a holding pattern. I am very glad that you are here sharing your experience with us and hope that you will keep us up to date on your findings and what the doctors have to say about it. You definitely are not alone and I would like send Hugs and prayers to you if that is appropriate. It is nice meeting you. Kris
Hello an d thanks to all who have responded to my posting. My apologies to all of you I have not acknowledged. I still work in real estate and am on business email so much I tend to neglect my personal mail. I'm really not ignoring you, I just don't often sit down with this personal email. My heart really goes out to those, especially the young lady, who are experiencing the surgery and subsequent recovery. I really don't plan to have the surgery, however, one of you refer to the pain morphing into migraines and constant headaches. That is frightening. I still have t he 60 second ones. I have put the "Chiari Group" on my prayer list and I pray for God's comfort, peace and acceptance of this experience e in these bodiesHe has given us. He knows what we can bear and gives us His strength for our struggles. May God bless each and every one of you.