Aa
How did you deal with finding out that your had chiari malformation?
Just found i had this this last tuesday. Im only 17, and yet im more exhausted every day than my father who does labor jntensive HVAC with legs that are near crippled and Blood pressure that always drops, and yet all i have done is get home from school where i sat down all day. I can barly make out what has happned during the day because i dont remeber, the head fog just takes over. Ive dealt with this for four years, and yet nothing helps. I dont know how you personaly feel, but i understand that this suck, just uterly ***** to all heavem and hell beyond. Nobody understands why why my mood is chipper one day then angry or silent the next. We live in a world other than everyone elses. The constant in and out of realty is tiring in its self. I can only hope that people will one day understand that this is a problem. Yes it is in our head, but we arnt making these symtoms up. Our brain, the one physical thing that defines us as humans the most, surpress our personality, our loving nature, our freedom. Im not asking for a cure, heck im coming to terms now that this isnt one, all im asking for is somebody out there who cares, and maybe some Advil thats strong enough to kill the pain. How do i deal with this, i know theres no magic cure, but how did you deal with it? I was relieved at first to find out the problem, but now im lost.
Oh wow, im glad to hear youve become sober. Im sorry to hear that it had gotten to that point. You know, its people like you who make me feel better and realize that this wont be that bad. You understand, give advice, and are just down right caring. For years i thought it was all in my head, as did alot of people lol, but now that i know, eveyone is like holy crap. My whole family is offering their support. Just last night my grandmother gave me a stern talkiing to about preping for surgery. Thanks for the help, as well as everyone who has helped. Simply knowing that there are a few others out there that take the time to help another when they have, many times worse, situations than myself. Love this community,literally read every thread xD
Hi, i'm so glad you found this group. Your post fell heavy on my heart because I, like most other Chiarian's know all too well how you feel.
I was a year younger than you when I found out about my DX and your age when I had the surgery, but I honestly can't tell you how I dealt with it because I didn't well, I was numb. Nothing helped with my pain so I turned to drinking,now at 23 I've been sober over a year, and I am just now coming to terms with the fact that I'll never lead a normal life, but that's not to say you can't!!
Please be strong and true to yourself, do not be afraid to say no when you don't feel up to doing something. Pushing yourself will just make things worse.
One of the main problems I have had since my DX and being so young is being written off as a drug seeker/depressed/anxious by many, if not all of the doctors I have seen. Do research and learn as much as you can about your condition, because most doctors really have no clue!
Having Chiari and not getting the answers you are looking for can be one of the most disheartening things in the world, but don't give up!
Be patient, keep looking for answers.
I know none of this will take the pain away but you can't give up.
I hope everything goes okay for you, please don't be afraid.
I was a year younger than you when I found out about my DX and your age when I had the surgery, but I honestly can't tell you how I dealt with it because I didn't well, I was numb. Nothing helped with my pain so I turned to drinking,now at 23 I've been sober over a year, and I am just now coming to terms with the fact that I'll never lead a normal life, but that's not to say you can't!!
Please be strong and true to yourself, do not be afraid to say no when you don't feel up to doing something. Pushing yourself will just make things worse.
One of the main problems I have had since my DX and being so young is being written off as a drug seeker/depressed/anxious by many, if not all of the doctors I have seen. Do research and learn as much as you can about your condition, because most doctors really have no clue!
Having Chiari and not getting the answers you are looking for can be one of the most disheartening things in the world, but don't give up!
Be patient, keep looking for answers.
I know none of this will take the pain away but you can't give up.
I hope everything goes okay for you, please don't be afraid.
Hello NikRod97,
I will reiterate what was said before, everyone is different. You are so young and your educational journey is not over i agree that you should let your teachers know about your condition and hope that they can work with you, any way you can register this with the school as a disability? I am not an expert at this at all, i myself was diagnosed last May, 2014. My chiari has different symptoms and flares and i am still deciding on the surgery as i also feel a bit lost when making the decision. I find that it is hard to find good doctors that know about Chiari and its symptoms.The summer for me was pretty bad with dizzy spells, lots of nausea with weight loss, some body weakness, and panic attack similarities, and very fatigued i couldn't keep my eyes open. But i have been feeling better honestly, i guess those are the flares they speak of. I pray you find your way and that it all works out for you.
I will reiterate what was said before, everyone is different. You are so young and your educational journey is not over i agree that you should let your teachers know about your condition and hope that they can work with you, any way you can register this with the school as a disability? I am not an expert at this at all, i myself was diagnosed last May, 2014. My chiari has different symptoms and flares and i am still deciding on the surgery as i also feel a bit lost when making the decision. I find that it is hard to find good doctors that know about Chiari and its symptoms.The summer for me was pretty bad with dizzy spells, lots of nausea with weight loss, some body weakness, and panic attack similarities, and very fatigued i couldn't keep my eyes open. But i have been feeling better honestly, i guess those are the flares they speak of. I pray you find your way and that it all works out for you.
Thanks for all the support, the advice has really helped, my parents are helpij gme through this as well. They sit fown with me every night and just talk about, small stuff, generally crack some jokes, all and all, In starting to feel but better about it. To answer your question Elisaanbucky, I attempt to get at least 8 hours a night, sometimes its hard and i get 6. I temd to come home and sleep for about 2-3 hours though. Weekends i usually sleep for about 12-13. Honeslty its even picked up latly. My days on weekends tend to be about 6 hours of time awake. Guess i show the typical TV teen right haha.
Hello. Having these symptoms while going to school is challenging. The one thing I suggest is to explain your condition to your teachers so they know that you care about your studies. As a teacher, I have compassion for students who let me know about documented medical conditions.
How many hours of sleep do you get on an average night? I have a son who is your age and he struggles when he doesn't get his 8 hours. Then, know that some people need even 9 hours. I try to get as much quality sleep as I can at night - which is sometimes difficult if I have pain. Do you allow yourself to relax during the day? Or, do you have the chance to get a short nap? I hope I have helped you - I can hear your frustration. Keep current so that you can continue to get our support.
How many hours of sleep do you get on an average night? I have a son who is your age and he struggles when he doesn't get his 8 hours. Then, know that some people need even 9 hours. I try to get as much quality sleep as I can at night - which is sometimes difficult if I have pain. Do you allow yourself to relax during the day? Or, do you have the chance to get a short nap? I hope I have helped you - I can hear your frustration. Keep current so that you can continue to get our support.
It has been a year ago that I learned I had this condition. Like Selma said this journey is different from person to person as this condition affects us all differently.
For me, I knew something wasn't right when I kept having headaches for two weeks out of every month. Once I learned I had this dx, I immediately went online to do research on this. As I have never once heard of this condition myself. That's when I ran across this community. It has been a saving grace with me and the many questions that I couldn't get answered too. Once I did research on it, I started to research many doctors and narrowed my list down to three of the ones I felt comfortable with. Then I made contact with them all to narrow my choice down once again. It took along time for me to make my choice. But I am happy with it.
Selma has helped us all in our journeys. Make sure you get checked for all related conditions as it is very important to do so. As any other condition can affect our symptoms. Keep a journal like Selma said. Take notice of what might cause your flair ups. This will be key to help you understand your body and how your body is affected when you have these flair ups. Keep your neck muscles loose as much as possible as well. As that has caused a lot of issues with me.
There is no medication that will help. An if you find one it doesn't work for that long. I am on three different medications that work sometimes but it is not something I take on a daily basis as it will only make me sick. Take one day at a time that is the best way to deal with this condition.
For me, I knew something wasn't right when I kept having headaches for two weeks out of every month. Once I learned I had this dx, I immediately went online to do research on this. As I have never once heard of this condition myself. That's when I ran across this community. It has been a saving grace with me and the many questions that I couldn't get answered too. Once I did research on it, I started to research many doctors and narrowed my list down to three of the ones I felt comfortable with. Then I made contact with them all to narrow my choice down once again. It took along time for me to make my choice. But I am happy with it.
Selma has helped us all in our journeys. Make sure you get checked for all related conditions as it is very important to do so. As any other condition can affect our symptoms. Keep a journal like Selma said. Take notice of what might cause your flair ups. This will be key to help you understand your body and how your body is affected when you have these flair ups. Keep your neck muscles loose as much as possible as well. As that has caused a lot of issues with me.
There is no medication that will help. An if you find one it doesn't work for that long. I am on three different medications that work sometimes but it is not something I take on a daily basis as it will only make me sick. Take one day at a time that is the best way to deal with this condition.
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
For everyone it will be different as our journey with this condition will vary from person to person....
Me, I researched this and ALL related conditions and then Drs....knowing what it was is a relief for sure....but that is just the start....you may have other related conditions that can be also affecting you with symptoms....
Do research Drs and find a true Chiari specialist and get testing as more is needed to see if you have a CSF obstruction or a related condition like Syringomyelia, tethered cord, disk issues, ICP, POTS, CCI, ehlers-danlos...low levels of vitamins and minerals....sleep apnea...
Keep a journal of your diet and activities along with symptoms to see if there are connections...
One day at a time is the one and only way to deal with this....
Have an Answer?
You are reading content posted in the Chiari Malformation Community
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
