- Messages
- 4
I've searched the internet several times and cannot find any information relating to my experience. While many people mention some type/intensity of pain before a storm/rain, I have several other symptoms that is completely life altering because it strikes at any time and there's no indication how severe it will be. I would greatly appreciate any insight.
At first it was just severe migraines before a storm. Those of you who know how pain-before-a-storm works will know that it's not with every single storm. It apparently depends how quickly the pressure drops - or something like that. Sometimes I'm lucky enough to just have a few of these symptoms but usually it's all. Mostly they last an hour or so and sometimes a whole day or several days.
Later the before-a-storm migraines changed to:
- Extreme difficulty breathing: My breath is so shallow I literally focus all my attention on just breathing because it feels like my body might stop doing that. I had asthma before and this is not asthma, my lungs are completely clear, not a hint of any wheezing. I always kept saying it's the muscles around my lungs that don't seem to work - I eventually learned they call that chest wall muscle fatigue. A very literal description is that it feels like I'm wearing a metal chest plate that prevents me from breathing in and out properly, it allows just enough to survive. Once the rain comes, it lifts and I can breathe again (I will mention the after effects later)
- Weakening of the spine: I can't sit up, I can't keep my head up for long. It's like my spine has lost strength/control. This clears completely once the pressure goes up, and I'm completely capable of controlling my body again.
- Heavy limbs: heaviness in my arms and legs, tremendous difficulty to lift my hands to eat or drink. A general feeling of weakness in the muscles, can't grip small things in my hands. It all clears once the pressure changes.
- Internal system slowdown: as strange as it might sound, I can feel my food go down slower. This has numerous times led to severe stomach pain because I cannot digest food. I've now learned to rather drink a shake or have very small bites over an outstretched period (even soft food takes long to get through). I don't take my tablets when I'm like this anymore because even though I keep drinking fluid if feels like they are still "stuck". (These are the kinds of things you don't mention out loud too much because you already get enough weird looks with this condition. I fully realize that it probably sounds ridiculous to some)
- Brain fog: while this is a common symptom this is in its extreme form where even simple sentences seem too hard to grasp. During this episode it's a matter of "don't even talk to me please".
- Limited talking: This is obviously due to the limited ability to breathe so it doesn't surprise me that I can't talk more than a few words.
- Nerve pain: particularly in the top third of the spine but also spread anywhere or all over the body. (One of the last storms caused my entire right side's nerves to be on edge. I couldn't even touch my own face on the right side for days, it's starting to get a bit better. But the nerves in my hip keep me limping. Not sure why it won't get better this time.)
- Need to lie face down: This one baffles me. I don't like to lie on my stomach, it's not natural for me. But one of the telltale symptoms when the pressure drops is I just "have to" lie flat on my stomach, no pillows, hands touching the ground. Of course I have control and do try and sit or lie down otherwise but it's the weirdest thing that my body keeps feeling like I have to lie down totally stretched out flat, face down. And you won't ever otherwise find me in this position to rest. I find this very strange.
- Deep sleep: I don't get this very much so this is almost an advantage. But it's usually just a nap, maybe an hour. But I'm knocked out, I close my eyes and I'm totally sleeping. Under normal circumstances I have extreme difficulty sleeping and just cannot seem to reach deep sleep.
So while all the above symptoms disappear like the flick of a switch once the pressure goes up, I can get up, talk, eat, like everything is normal, I do lose something every time this happens: muscle strength. My chest wall muscles particularly. And now after 2 weeks of a lot of storms, my legs and arms feel weaker too. I feel like I've been out of action for ages. I thought it might be "perceived weakness", that if I try I can still hold something or pick something up like before. It's not, my muscles are truly weaker after each bad storm effect.
This spring has been the worst. We don't know where to turn to because there is no answers for those who struggle with barometric pressure migraines or pain.
I don't know when it will strike because the pressure drops even though the sun is shining on a warm day and the storm is two days away. I've also had the effects even when the rain is on the surrounding mountains but we don't actually get rain in our part of the city. So it's quite unpredictable.
I know this was a mouthful. How do you even effectively search this online?
When I explained how everything in my body seems to be in slow motion I was recently told about the theory that ME causes hibernation-like symptoms. That would be about the closest description that I would agree with.
I'm thinking our bodies naturally have something that regulates the body to stay "stable" while the atmospheric pressure changes. That little something in my body has malfunctioned (well, it's broken I'd say) I've only had this particular addition to my ME symptoms for 2 years.
It came after a mysterious undiagnosed infection that was thought to be on the vestibular nerve in my brain. The doctor couldn't get a conclusive answer before the infection cleared. The infection cleared but turned me into a human barometer.
Thanks in advance
Lee-Anne
At first it was just severe migraines before a storm. Those of you who know how pain-before-a-storm works will know that it's not with every single storm. It apparently depends how quickly the pressure drops - or something like that. Sometimes I'm lucky enough to just have a few of these symptoms but usually it's all. Mostly they last an hour or so and sometimes a whole day or several days.
Later the before-a-storm migraines changed to:
- Extreme difficulty breathing: My breath is so shallow I literally focus all my attention on just breathing because it feels like my body might stop doing that. I had asthma before and this is not asthma, my lungs are completely clear, not a hint of any wheezing. I always kept saying it's the muscles around my lungs that don't seem to work - I eventually learned they call that chest wall muscle fatigue. A very literal description is that it feels like I'm wearing a metal chest plate that prevents me from breathing in and out properly, it allows just enough to survive. Once the rain comes, it lifts and I can breathe again (I will mention the after effects later)
- Weakening of the spine: I can't sit up, I can't keep my head up for long. It's like my spine has lost strength/control. This clears completely once the pressure goes up, and I'm completely capable of controlling my body again.
- Heavy limbs: heaviness in my arms and legs, tremendous difficulty to lift my hands to eat or drink. A general feeling of weakness in the muscles, can't grip small things in my hands. It all clears once the pressure changes.
- Internal system slowdown: as strange as it might sound, I can feel my food go down slower. This has numerous times led to severe stomach pain because I cannot digest food. I've now learned to rather drink a shake or have very small bites over an outstretched period (even soft food takes long to get through). I don't take my tablets when I'm like this anymore because even though I keep drinking fluid if feels like they are still "stuck". (These are the kinds of things you don't mention out loud too much because you already get enough weird looks with this condition. I fully realize that it probably sounds ridiculous to some)
- Brain fog: while this is a common symptom this is in its extreme form where even simple sentences seem too hard to grasp. During this episode it's a matter of "don't even talk to me please".
- Limited talking: This is obviously due to the limited ability to breathe so it doesn't surprise me that I can't talk more than a few words.
- Nerve pain: particularly in the top third of the spine but also spread anywhere or all over the body. (One of the last storms caused my entire right side's nerves to be on edge. I couldn't even touch my own face on the right side for days, it's starting to get a bit better. But the nerves in my hip keep me limping. Not sure why it won't get better this time.)
- Need to lie face down: This one baffles me. I don't like to lie on my stomach, it's not natural for me. But one of the telltale symptoms when the pressure drops is I just "have to" lie flat on my stomach, no pillows, hands touching the ground. Of course I have control and do try and sit or lie down otherwise but it's the weirdest thing that my body keeps feeling like I have to lie down totally stretched out flat, face down. And you won't ever otherwise find me in this position to rest. I find this very strange.
- Deep sleep: I don't get this very much so this is almost an advantage. But it's usually just a nap, maybe an hour. But I'm knocked out, I close my eyes and I'm totally sleeping. Under normal circumstances I have extreme difficulty sleeping and just cannot seem to reach deep sleep.
So while all the above symptoms disappear like the flick of a switch once the pressure goes up, I can get up, talk, eat, like everything is normal, I do lose something every time this happens: muscle strength. My chest wall muscles particularly. And now after 2 weeks of a lot of storms, my legs and arms feel weaker too. I feel like I've been out of action for ages. I thought it might be "perceived weakness", that if I try I can still hold something or pick something up like before. It's not, my muscles are truly weaker after each bad storm effect.
This spring has been the worst. We don't know where to turn to because there is no answers for those who struggle with barometric pressure migraines or pain.
I don't know when it will strike because the pressure drops even though the sun is shining on a warm day and the storm is two days away. I've also had the effects even when the rain is on the surrounding mountains but we don't actually get rain in our part of the city. So it's quite unpredictable.
I know this was a mouthful. How do you even effectively search this online?
When I explained how everything in my body seems to be in slow motion I was recently told about the theory that ME causes hibernation-like symptoms. That would be about the closest description that I would agree with.
I'm thinking our bodies naturally have something that regulates the body to stay "stable" while the atmospheric pressure changes. That little something in my body has malfunctioned (well, it's broken I'd say) I've only had this particular addition to my ME symptoms for 2 years.
It came after a mysterious undiagnosed infection that was thought to be on the vestibular nerve in my brain. The doctor couldn't get a conclusive answer before the infection cleared. The infection cleared but turned me into a human barometer.
Thanks in advance
Lee-Anne