Extreme wind sensitivity, but not caused by barometric pressure?…

[Nead]

Hi everyone, I’m new here and I am hoping that somebody can help me with this new trigger that is causing severe symptoms. Whenever I am physically exposed to wind, either warm or cold, on my chest, neck or head, I have an immediate flare of symptoms. My mood automatically swings to anxiety, my neck stiffens, I have a sensation of a chill around my head, my head also feels full/heavy, my temperature swings hot and cold, I have muscle pain throughout my body, a heavy fatigue sets in and in general I feel dreadful. These symptoms can then last for up to 48 hours, requiring bed rest. Most of these symptoms are my regular MECFS symptoms (generally not all together), but the intensity and immediacy of how they all appear in wind exposure is new to me, extra debilitating, but hopefully is pointing to a new clue as to the cause of my illness.

I have followed different threads about weather sensitivity linked to barometric pressure, but I am questioning if that is what is happening to me, as if I stay indoors and I am not directly exposed to the wind I am fine (well my normal level of CFS fine!). Also sometimes I can be out in the wind without being affected if I am wearing a hat, scarf and warm coat. So it does seem my sensitive zones are chest, throat, head and ears.

I have had MECFS for 17 years and from the early years of being bed ridden, I would now describe my general condition as moderate.

I would greatly appreciate any ideas.

 

[VintageME]

North Country Public Radio (NCPR) had a blog post several years ago discussing the potential negative health effects of the positive ions generated by wind.

Positive ions can make for an “ill wind” « All In

blogs.northcountrypublicradio.org

I used to have quite severe electromagnetic hypersensitivity which seems to be related. It wasn't just my imagination...back when we had watches with jeweled movements that you had to wind I seemed to have a buildup of electricity in my body that would stop the watch. My watchmaker asked if I worked around high voltage equipment like a substation because he said that's the only thing he had seen that would cause that particular kind of damage. An electrical engineer suggested that something on the electrolyte level was perhaps causing such strong resistance in my cells that it was causing this sensitivity.

I figured if that was the case, sodium would help relieve the symptoms just like when a vaporizer builds up deposits from hard water and quits working because of the resistance caused by the minerals. If you add a little salt to the water it begins working again. So I increased my salt intake and it did help. Later when ME/CFS became better known, many patients found that a high-sodium diet improved their symptoms but it was a day-to-day fix, and eating a lot of salt is not great for your kidneys.

I found a nephrologist who was willing to do some testing and we found that my aldosterone levels were low. That's the steroid hormone made by the adrenals similar to cortisol but its main role is to regulate sodium balance. By increasing sodium retention it also corrects low blood volume which tends to be a problem in ME/CFS.

There are two solutions...one is to take the synthetic form of aldosterone called fludrocortisone or Florinef, and the other is to use licorice root extract (not the same a licorice flavoring which is from anise) which mimics aldosterone and can bind the receptor. I opted for the licorice root treatment and we monitored potassium levels to be sure I wasn't excreting too much, but it made a huge difference. My blood pressure normalized for the first time in my life and the sensitivity to electromagnetic fields and even wind was reduced dramatically. The only thing that still affects me is the wireless radiation from certain cell phones and routers which seems more related to a histamine response.

Blood volume testing is difficult to get and requires a radioactive tracer, but you can easily get serum and urine aldosterone testing. There are some guidelines about diet before testing and even the position you are in for the blood draw, so it's important to get a technician who understands the guidelines (the urine test is a 24-hour collection - it's good to get both):
"Collect midmorning after patient has been sitting, standing or walking for at least 2 hours and seated for 5-15 minutes. The reference intervals for serum aldosterone are based on normal sodium intake."

It might be worth checking to see if it is a possibility for you.

 

[Nead]

Thank you VintageME for your very generous and helpful reply. I am interested in all that you have said and will follow up with getting tested for aldosterone. It all resonates with me, as my readings on this site during the last week have brought to my attention blood volume, orthostatic intolerance, MCAS and ICP, all of which may be a factor in what I am experiencing. I will also do the 10 min lean test later this week to see if POTS is an issue.

Hopefully things may become clearer, thanks again.

 

[Creekside]

I seemed to have a buildup of electricity in my body that would stop the watch.

It wouldn't be electricity. Any static electricity would build up on the outside of the metal case; there would be no static charge inside the case. I never heard a good explanation for why some people tended to stop watches, but it wouldn't be electricity, and probably not magnetism either (would be easily solved by degaussing). Possible explanations are personal movement habits, or even skin microbiome working its way in and gumming up the lubricants.

 

[Suzie B]

I am also very sensitive to wind Nead, and my symptoms are much worse on very windy days. I’m mostly in bed so don’t have my body exposed to the wind but just the air disturbance seems to trigger me! I also have MCAS and I’ve always thought that it is the increase in dust and pollen in the air that affects me. I increase my antihistamines on windy days and that helps a bit. Also, I know that my body type (air) in Ayurvedic medical system from India that I studied as part of my Yoga training, makes me very sensitive to wind without the compounding effects of ME. I have never liked wind even before I got sick!

 

[GforGeorgie]

I am sensitive to wind also, though not as extreme as you. I also found the Indian Ayurvedic philosophy helpful. I am dominant Vata (air) which gets activated by seasonal changes, dryness, wind etc. This creates anxiety and other symptoms. I’ve learnt how to tend to myself during these types of weather. Definitely cover up or avoid wind, lots of oil on my skin, warming cooked foods, regular daily routines, Ayurvedic massage and saunas help.

Wishing you all the best x

 

[Nead]

Thank you Suzie B and GforGeorgie, you have brought my attention back to Ayurveda. From a panchakarma I did years ago I know that I am dominant Vata also, so I will look back into anything I can change around this. And yes I'm beginning to suspect that MCAS is a factor for me along with POTS so I've been making some changes around my salt intake and trialling antihistamines in this last weeks. Fingers crossed I see some improvements as I really want to go back out into our short-lived Irish summer!

 

[GforGeorgie]

Thank you Suzie B and GforGeorgie, you have brought my attention back to Ayurveda. From a panchakarma I did years ago I know that I am dominant Vata also, so I will look back into anything I can change around this. And yes I'm beginning to suspect that MCAS is a factor for me along with POTS so I've been making some changes around my salt intake and trialling antihistamines in this last weeks. Fingers crossed I see some improvements as I really want to go back out into our short-lived Irish summer!

Good to hear Nead.

I have found Oral Rehydration Solution very useful for my POTS/OI and I never leave home without a sachet of it in my bag. Cort has written about it on the Health Rising blog a few times. Once I improved my exercise tolerance and stopped getting PEM, I also found exercise helped with my blood pressure and therefore my POTS/OI.

 

[Claudie]

.Je suis aussi très sensible au vent. Même une petite brise me donne mal à la gorge, et même si le vent est "chaud" avec une température élevée. J'ai aussi l'impression que la nourriture remonte dans mon œsophage, ce qui provoque une gêne dans la gorge. Peut-être que les deux sont liés ? Au moment où j'écris ce message, je me rend compte que je ressens ce symptôme (parmi beaucoup d'autres) plus fréquent. Je suis également sous antihistaminiques (H1) , je vais essayée d'augmenter la dose.
I am also very sensitive to the wind. Even a light breeze gives me a sore throat, and even if the wind is 'hot' with a high temperature. I also feel like food is going up my esophagus causing discomfort in my throat. Maybe the two are related? As I write this post, I realize that I am experiencing this symptom (among many others) more frequently. I am also on antihistamines (H1), I will try to increase the dose.

 

[Reen]

Hi everyone, I’m new here and I am hoping that somebody can help me with this new trigger that is causing severe symptoms. Whenever I am physically exposed to wind, either warm or cold, on my chest, neck or head, I have an immediate flare of symptoms. My mood automatically swings to anxiety, my neck stiffens, I have a sensation of a chill around my head, my head also feels full/heavy, my temperature swings hot and cold, I have muscle pain throughout my body, a heavy fatigue sets in and in general I feel dreadful. These symptoms can then last for up to 48 hours, requiring bed rest. Most of these symptoms are my regular MECFS symptoms (generally not all together), but the intensity and immediacy of how they all appear in wind exposure is new to me, extra debilitating, but hopefully is pointing to a new clue as to the cause of my illness.

I have followed different threads about weather sensitivity linked to barometric pressure, but I am questioning if that is what is happening to me, as if I stay indoors and I am not directly exposed to the wind I am fine (well my normal level of CFS fine!). Also sometimes I can be out in the wind without being affected if I am wearing a hat, scarf and warm coat. So it does seem my sensitive zones are chest, throat, head and ears.

I have had MECFS for 17 years and from the early years of being bed ridden, I would now describe my general condition as moderate.

I would greatly appreciate any ideas.

I get very much the same symptoms whenever I am shopping. In any ( department) store. If I'm in the store for too long a time, or sometimes right away. I get the immediate overwhelming anxiety which causes me to want to flee on the spot. I begin to ache all over. I get the chills also the fog hits and I go into a confused state of mind. My clothing feels tight, especially around my ribs and chest. I've always thought it had something to do with the lighting, figuring most stores use florescent lights.
Im surprised to read that others get same or similar symptoms.

 

[Reen]

I get very much the same symptoms whenever I am shopping. In any ( department) store. If I'm in the store for too long a time, or sometimes right away. I get the immediate overwhelming anxiety which causes me to want to flee on the spot. I begin to ache all over. I get the chills also the fog hits and I go into a confused state of mind. My clothing feels tight, especially around my ribs and chest. I've always thought it had something to do with the lighting, figuring most stores use florescent lights.
Im surprised to read that others get same or similar symptoms.

I should have added that I have fibromyalgia since 2001.
Recently diagnosed with Rheumatoid Arthritis.
😊Thanks!

 

[TAllen]

Breezes inside or out are an MCAS trigger for me. FYI about POTS, 60% of people with POTS have been found to have a spinal fluid leak so if you've ever had a lumbar puncture (epidural?) or head trauma, add that to your list to investigate. Was true for me.