Chiari Online Support Group

Pain and pressure with weather changes / Low Barometric pressures

I was diagnosed summer of 2013 and had decompression surgery October 2013. The first 6 months were absolutely amazing. Then the head aches started to return occasionally but nothing like they were before surgery. Over the last 6 years they have become more frequent and weather changes/ low pressure systems wreak havoc on me. Meds help somewhat but just enough to get by sort of. I am afraid my brain may have settled and now the crowding is getting worse. I can lean my head back and roll my head side to side and hear the fluid noises so I know it is the spinal fluid build up. Does the weather affect anyone else like this ?

Hi Edwin! I was diagnosed in 2009 and am not decompressed. I live in the panhandle of Florida and I can absolutely feel almost every pressure system come in. I usually can tell that it’s about to rain even if the radar doesn’t pick it up. It’s like the worlds lamest super power! I’ve looked into it and it seems like we are just really sensitive to changes in barometric pressure. I’ve asked in a FB group that I’m in and we are definitely not alone! I’m not sure about the fluid situation you’re dealing with, but I hope you get some answers for that part as well.

I have not and will not get the surgery unless I start to get severe symptoms like the headaches you are describing! But I absolutely can relate to the low pressure! It’s awful! I have tremors in my face, I’m dizzy, can’t think straight and I feel like my head is in a vice grip! I live in AZ where it’s always low pressure. My husband and I are actually moving to a higher elevation in Colorado because we both feel better there. He has neck issues that are similar to my Chiari. I’ve noticed the heat in AZ makes it worse too - must cause swelling in the area! Advil can back it off some but it takes around 800mg. Hope you feel better soon!

Oh and when it’s bad I can’t sleep at night! I feel like when I close my eyes it’s not dark. Makes me wonder if it’s the low pressure or if we are all extra sensitive to Wifi? Or both! I never have that problem at a higher elevation. I do have sleep apnea and have a cpap machine so I know that that isn’t the issue. I guess a lot of people with Chiari have sleep apnea!

I had a decompression and cervical fusion in 2012…total life changer.
I always have a headache of some degree …as long as it’s low key, I’m ok.
The weather definitely affects me, along with a bunch of other things.
I’m just grateful to still be on my feet.

I have chiari too.
And those straw suckin sounds drive me anxiety bat shit crazy .
I go to the surgeon in san Antonio tx next month .
We will schedule decompression as I have lost the weight she requested to make things a little easier.

Hello… the noises you hear can I ask do they sound like bubbly? Or fizzy ? Reason I ask is I had decompression 2016 walked to theatre n never walked right since, no help at all headaches worse than ever I now am
Reliant on a walking aid and wheelchair, it’s totally messed my life up. But the noises I have send me daft. I try and explain like a kalidascope, when u tilt from
Side to side the noise of the beads rolling? And as much as I try and tell my NS he looks at me and tells me it’s all in my head (excuse the pun) that there normal
Noises a person without this condition hears? Now I’ve aaked everyone I no and they look at me like am
Cracking up… please help
As I’m getting no help at all and these noises are torture. Also on a wide verity of meds that have little to no effect.

Hello Edwin, I was decompressed in 2014. My temple headaches have worsened. I, too hear fluid in my head again, especially the loud ear sounds. I had hydrocephalus and meningitis as well. I had another surgery last October to fuse c-2 through t-1. Horrible pain with that one. The change in pressure is tough, even in Nebraska! I started taking CBD oil and it has helped me so much! I’m not taking much of anything else for pain now. You might give it a try!

if I am having a bad day and have a pressure headache I can lean my head back and roll my head from side to side and I can hear a squishing
Or fizzing sound as I do. At times this seems to relieve the pressure somewhat because my headache will get better. I have tried some CBD oil and I couldn’t feel any difference. Another issue I have now after the decompression surgery is my neck muscles are so much weaker after being cut.

I certainly know what you mean about weakness in your muscles. My t-1 bone was removed almost completely. I don’t have very much shoulder and neck strength anymore. I’m so sorry for your pain, if you are like me, you don’t talk about your issues much with others. Seems isolating at times. Take care.

Hey Edwin,
I’ve required a few neurosurgeries and have found that the weather can have a huge impact on my headaches. Initially after surgery I had these weird noises when walking, like a whooshing. I spoke to the neuro and, as others have said, was told “It’s all in your head” No pun intended. Eventually I got a dr to investigate further and they found there was an issue with the cerebral spinal fluid (CSF) and that required further surgery with the insertion of a shunt.
Now, Has the shunt helped? This depends on who I talk to about it. According to the radiologists and the neuros… …Yes, it has helped. My CFS measures are normal. BUT, has it helped with the headaches? This is debatable and that debate also varies depending on the dr I speak to as well. Some say ‘it’s the shunt’, some say ‘It’s the surgeries’, some say ‘It’s medication’ some say ‘It’s the weather’, some say ‘It’s stress’, some say ‘It’s my eyes’, some say ‘It’s my hearing’, some say ‘It’s because I do too much’, some say ‘It’s because I don’t do enough’ etc, etc, etc. If I ever have 2 dr’s ever agree I’ll be sure to buy me a lottery ticket because IMO that’ll be a damn miracle for them to be in agreement.

Please know that you are not the only one having these issues and personally I have found that comes down to a case of management. For some it can be controlling activity, for some it can be medication, for some it can be weather, for some it can be… any number of things. There doesn’t seem to be any hard and fast rule.

Merl from the Moderator Support Team

My headaches are much less often now than before surgery. I have found if I lean my head back and roll it from side to side the fluid noise is

There but that movement seems to cause the fluid to drain off and I can feel the pressure drop.

When I feel the pressure come up it feels like a black cloud is pushing down on the top of my head. This is such a weird condition and so many different symptoms associated with it.

I also suffer from occasional heart palpitations

And was told that is also a symptom.

I don’t feel that my symptoms are as bad as lots of people even after treatment.

Yes high pressure is the best.

Hey Edwin,
“I don’t feel that my symptoms are as bad as lots of people…”
I had a similar view prior to surgery…then they operated …then the wheels REALLY fell off my little wagon.
I thought I knew pain, I thought I knew symptoms. Post surgery I got me a whole new education in both. I’ve NEVER had pain like it and as for symptoms, they seem never ending. “I don’t like this rollercoaster, stop, I want to get off” if it was only that easy though.
It’s great that you’re feeling OK, but if things change, get it seen to as a priority. Us males often minimise things when we shouldn’t, well, that is, I did and the resulting consequences of doing so have been devastating. So, ahhh, don’t do that. If you see a change follow it up, even if that’s only to be told ‘All is OK’

Merl from the Moderator Support Team

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Yeah my wife definitely wants me to see my Dr about it. I have found that I can actually reduce
My pressure when Leaning my head back and rolling my head side to side. The squishing noise
Is really loud at first and gets quieter as I do that.
A lot of my symptoms I just figure it is old age but I know better.

“…I just figure it is old age…”
LOL. Yea, we’re great at minimising. My common line is often ‘Yea, it’ll settle…’ and it often does, but at times it doesn’t settle either. ‘She who must be obeyed’ ( my wife ) gets on my case and often it’s just easier to say ‘Yes dear’ and follow through. I have a shunt to drain the fluid from my skull, it has a valve. I can press on the valve to empty it, if it refills I know it’s all working OK. When it doesn’t refill, it’s a clear sign of a bigger issue. If I can show her it’s all working this often quells her concerns, for a bit at least.

Merl from the Moderator Support Team

Well yesterday as I was driving to work my vision blurry with my glasses on. Got to work and I couldn’t focus on my computer screen/print was blurry. I had a light headache and over the next hour I felt the pressure building and the headache became severe. Got dizzy and lights were killing me. Left work and went home to take a med for migraines. It helped a little but had a rough night last night and still hurting badly this morning.
I checked the weather forecast and I see a big change on the way. Weather definitely makes a huge impact on me.

Unfortunately Edwin the weather, bright light, electrical storms etc can all have an impact for some of us. Others may disagree as the effect for them is minimal but I can assure you, you’re not alone when it comes to the fluctuations in the weather. I find the meds can help if I can get them into me as soon as the symptoms start, but once I’m in a full blown agony stage the meds are lucky to touch the pain.

Merl from the Moderator Support Team