Does weather affect your Chiari symptoms?

Question

I am in my late 40's and was recently dx w/chiari and cervical spinal stinosis.I can go back to grade school and remember the different symptoms I had, that no one addressed.Now that I have the dx I want to see if there are certain things that cause the symptoms to worsen.Such as heat...it was so hot and humid on Sunday and I never had a feeling of melting and sweating like I did and my headache got worse, the tightness in my neck and jawline was bothersome,and I was in a fog.Today I still feel like that and stayed in the AC.I know over the years if I got cold I would hurt more.How does your chiari symptoms cycle and what is a recurring factor?
Thanks for any input!

selmaS · Answer

Hi sissy and welcome to the Chiari forum.

 Chiari comes with other related conditions...POTS is one that is very much heat intolerant....so do make sure your Drs rule out ALL related conditions.

 Do you have a Chiari specialist?

sissy77780 · Answer

i also have Chiari. in any heat i experience some severe symptoms. i will have a bad headache, followed by severe swelling from the base of my skull,the whole right side of my face, into my right eye. i feel for anyone with this problem, for it is very difficult to deal with at times.

selmaS · Answer

Hi and welcome to the Chiari forum.

 I know the colder weather gets me too....not HA's but all over pains, joints, and my IBS flares....

 Do u know what all was done during ur surgery?Is this the only issue u have had since ur surgery? If so, sounds like u r doing well....

 I agree it is deff a invisible disease....and has several related invisible diseases as well....lol...

 Please keep us posted on how u r doing.

Dannysmom1331 · Answer

Selma- I am 40 and had Chiari surgery 8 years ago. Ever since I can remember, the cold has given me headaches, but lately, as soon as it hits 55, I am like a invalid! I get such bad headaches that I have started sleeping with a heating pad on my neck. I've been told that the cold slows down your spinal fluid and that's what causes the headaches. Originally, b4 I was diagnosed, the E.R. Told me I was just stressed because I have a child with neurofibromatosis (tumor disorder). I wish I could find better answers to solve this, but it is like putting pieces of a puzzle together. I'm figuring that in the next couple years my family will have to move south ;(. I wish you luck and will keep all of you in my thoughts. I consider it the "invisible disease" bcuz no one but you knows the daily hell you go through. Thanks for the posts, I will keep watching- Jennifer

selmaS · Answer

Oh I know it feels like we have known each other for so long bcuz we understand what each other is going thru...it is so odd and comforting all at the same time......

 My DD understands what I am going thru too, as I was the one that had her the most when she was growing up and now all the times I said I just can't, she can connect the dots and make sense of.

 Thanks u too, have a great weekend : )

alimcat · Answer

I thought so. It was funny I thought to myself she sounds like me right now, usually you aren't asking questions your helping get them answered so I knew this had to be an older one. It is really interesting that not one person has more than likely met before this site but we all seem to have the same story, even describing the same. Like you say connect dots I relate it to puzzles. Hahaha!! At least we aren't alone, we understand one another. I think its harder for people that look so normal but have all these problems. We are strong so we push and push and I feel like people sometime are like yeah right, the only person that sees me let go of my can't take me down attitude is my significant other. He sees me go through a lot and I am really thankful for how understanding he has been, it's got to be tough for him too. Have a fantastic day selmaS! =)

selmaS · Answer

Yes, this looks like one of my first posts to the forum.....weather has always affected me...and I wondered if it was related to the chiari dx....

 Funny u liken all of this to a puzzle....I have said it is like connecting the dots...once they r all connected we can finally see the whole picture : )

alimcat · Answer

Ps I definitely believe weather affects chiari. Well maybe not weather itself but the change in pressure as weather changes.

alimcat · Answer

If this isn't crazy! I think this is probably one of your first posts. I googled about of weather affects chiari and I passed this up and did another search which this came up again and so I clicked on it and look who it is! Haha!! That's so crazy. Reading your comment about it all making since now about how you felt when you were a child and I have been thinking the same thing. It's like all these mysterious puzzle pieces are finally coming together. I am not sure I even know what feeling normal is, that living with it so long this is normal. But reading about it I am actually identifying symptoms I just chopped up to whatever excuse I could come up with. Selma you are an amazing woman and you have come so far and are helping so many people. Thank you for all you do. ;-)

ms_no_name · Answer

Thank you for your comment about the Flare up's!!! 
I have been going through cycles the last few years (I had decompression surgery 20 years ago.at the age of 16) I have been trying to get pregnant, which we have had some issues in that area as well, which has caused me to take Hormones....with the issues I finally went to a nuerosurgon who said I was fine and basically had an I dont care attuide...so your post really made me feel that I am not going nuts with having flare ups!!!
Thanks for sharing!!!

Also: With the post of tempertures....I thought I was going nuts when I feel worse when I am out in the heat and humdity....almost like my muscles tighten up, very painful headache

Shane99 · Answer

I've noticed that hot and cold can effect certain symptoms. If I go from a hot shower to a cold or even cool hallway, I get dizzy and have fallen a couple of times before. I now open the door after my shower and wait a minute before going out. Also, and this is kind of weird, if I was dishes for a while, having my hands in the hot water causes me to get dizzy. I'm only good for maybe one sinkload at a time.

Weather in general (cold, hot, rain - really any change) causes my shoulder and hand to start hurting, but I'm not sure that's chiari related. I was in a wreck and damaged some nerves a few years ago.

youngwife · Answer

Hi, Selma!
I am sorry that you have to live with Chiari, but I am thankful that you have a proper diagnosis.

Yes!  Absolutely!  My daughter is certainly affected by the weather.  And she also has "cycles" with her symptoms.  Her neurosurgeon calls them "flare ups" or just the ups and downs of Chiari.

Hormones are also a huge factor with Chiari.  

HTH!
Rebecca