This is very helpful! I noticed that humidity and pressure changes, passion (happiness, anger, singing, yelling, speaking loudly, etc), and lack of sleep definitely make my days worse!
Thanks for posting this,
The only issue I have, is many with Chiari can go to bed and lay there for 13 hours and only sleep for 2 of them as insomnia is an issue for many of us...so yes, sleep is what many of us need but may not get as a result of the condition itself....and when we do, we do not have a refreshed sleep.
And the voice issues with singing and all that have been well documented to affect so many of us....so ur triggers do fit in with what many of us have found....and that we all feel like walking barometers....lol....problem is we all can not move to the desert....
And one last thing, u did not mention if u have ne chiari related issues....they can play havoc with us too....
I am so happy that u r able to have ur symptoms stay away for a while, but not to discourage u, when I look back I had yrs I felt good and was able to do a lot...chiari symptoms cycle....and the older I got the worse my symptoms were and the less down times I had....not sure what age group u r in,.....
But not all with chiari require surgery,....and many can function.....and I am happy for those that can....but if u take someone with EDS , Chiari, and a retroflexed odontoid and several other issues, nothing helps unfortunately.
Again I am happy u found something that works for u...and I pray it continues to work : )
I like that you've discoverd that it's possible to have CM but not let it have you. Keeping track of you're triggers and sharing with us is a great way to do that. It's great that you could move to a place that reduces your triggers.
Selma, I'm going to have to remember the "walking barometer". I can add that to my titles of Zipperhead, Weeble Wobble, and Bobble Head. ;)
You're so right about the stress/ emotions link to pressure. It's one of the things I have had the longest and hate the most. Nothing like needing to go Zen at odd times ;)
I had a reduction in symptoms with my first pregnancy and thought about the loosening up too. My second pregnancy it was the extra fluid that was not my friend. (Infact, I think the study of hormone cycles and women with cm is understudied.)
Selma is rignt about our chiari cycles too. While this can sound discouraging, now that I'm in a rough patch I just keep thinking about the good part of my cm cycle and how hopefully I'll get back there. I also like to tell my sister with cm that just because my rough patch is like it is doesn't mean she'll have to go through that type of severity in symptoms.
Oh no, I'm babbling. Well, thanks for sharing and keep up the positive attitude!
I have to say I had a sisuation today with my very understanding but yet very stubborn brother and mother. I have to add I am also stubborn. I like to say determined LOL...but they were getting after me today to stop to be able to put gas in my car and they wouldn't let up. I finally said to them. "Your stubborness is giving me a headache and NO I am not stopping". They stopped though LOL.....It does trigger me to yell or noise etc. I'm grateful that my stubborn family and myself understand and it is also a blessing to be able to determine what triggers the onset. I'm documenting them now so I can keep better track. I'm 2 yrs post op and I'm still figuring them out LOL....So happy they your doing well. Thanks for posting.
I appreciate everyone’s response. It is very refreshing to talk to somebody who understands. I gave up on getting even a bit of compassion from my family. But then again, would you believe such pain is possible if you did not experience it? One day we seem to be as sick as terminal stage cancer patients and the other we are all right. It can fool anybody. So I don’t blame them. To reply to some of your questions and comments,
- I am 32. Chiari hit me real hard when I was 22. I am kind of person who is pretty tough so I ignore minor pain but pain that was next to passing out I could not ignore so I got MRI. Then there were advices from doctors that go from one extremity to another, "oh, you will die in 2 months if you won’t get a surgery", in 2 months another doctor’s opinion, "if you can tolerate pain we don't have to correct it", medical assistant in neurosurgery department "you live with uncorrected malformation? is it even possible?", neurologist "that's not a big deal, you don't even have to get MRI ever again". So I decided to figure it out for myself with a basic assumption “there is no cure and as long as I can manage without surgery (without irreversible damage to my health like paralysis) I will because there is a chance surgery will make things worse”.
- Symptoms: range of headaches from dull annoying to acute, getting dizzy, throwing up (I try to take measures not to go there and did not for at least 2 years), passing out (only once 8 years ago after 2 eight hours flights one day apart and lack of sleep and being in %100 humidity area; I could not make more than 3 steps for 6 hours, any time I would get up I will pass out until my brain recovered; maybe I had a stroke, I don’t know; that’ when they said I will die in 2 months; I said “nope, my brain is young and strong, I will survive” and I did), I’m hard to break a sweat (as some of you mentioned before), running into furniture, hard to concentrate sometimes
- I am not in a pink clouds at all concerning my future…I know it will get worse with aging, and not because malformation will get worse but because our bodies can only take as much. When we have symptoms we have pressure in a brain that our brain is not designed to sustain forever and ever and pressure to a spine which might provoke syringomyelia. This is one of the reasons I take active measures to restore normal CSF flow when I am in pain. The less often we have symptoms and the shorter time is when we experience symptoms the less damage will be done. As I said before I will write about workout and other things that help in the next post. Thing is it works. Of course I cannot recommend it. I am not a doctor or physical therapist. I have degree in law and personal trainer certification. Still you might get some ideas from me and come up with your own program with your doctor’s approval.
- Insomnia could be an issue for some of us when we have symptoms. When we have sky high intracranial pressure in our brains any zone can be affected and depending on what zone is affected we may feel differently. I get or very restless or just shut down earlier than usual a night before symptoms come. I suggested sleeping more when you are symptom free. Laying down when they are already there won’t make things better for days. Already obstructed circulation will slow down even more. I never try to sleep when I am in acute pain, I resolve it.
- I never did take pain killers. Advil won’t work. Anything stronger…is addictive and what’s the point? When I am sick I want to know where I am at with my pain to be able to monitor and control it.
- We all can’t move to desert, it is true, I wish I could. I suggested vacations :). I went to the beach last weekend, believe me I paid for that :).
- Something I forgot to mention in previous post
Mountains and airplanes
Curious thing about those they may provoke symptoms or they can make them go. So if I am sick and drive up the mountains 10 plus minutes and back, I might come home symptoms free and other way around. Same with airplanes. No, I do not suggest we take airplane when we are sick, but driving up the mountain and a little walk up there could be a good thing.
Running and jumping
Please don’t do that. Shaking your head won’t make things better. Bike or stationary bike, and walking are good.
All the best to you all and please stay strong.
“what does not kill us makes us stronger”
I Never thought I would Ever have any surgery.
I have been eating organic, local food (frequently mine) for the last 40+ yr. i did "dancercise", before they even called it aerobics. Natural childbirth, breast fed kids, natural healing, Etc, etc.
Yet, I was born with a deformity, and you can't fix that with your mind, food, exercise, PT,vacations, or prayer. Many of us have had many, many years to figure out triggers & solutions. I was kept patched up by a particularly brilliant TCM practitioner for many years.
Im glad you found your triggers, but please understand that surgery is not the worst possible option. Suffering, with no hope or no Dx, is much, much worse. Chiari can cause permanent brain damage. I personally know someone like that (sad case, a very intelligent woman, MS in speech pathology who lost everything--her job, her home, her longterm disability,--& her cognition).
And who knows what part of the brain it might be: heart? bladder? Stroke?muscles? Mind?
There but for the grace of god go I. I wasn't ready to give up any of that.
She is the one who directed me to my NS; I am so grateful that surgery was available for me.
Good luck to you in your journey.