Nasty adrenaline rush during the early morning hours!

[MCASMike]

I often wake up around this time, 5 to 7 AM, but I get right back to sleep (and lately I've been sitting up a bit using three pillows at this time). This morning, around 5:15 AM, I got the two extra pillows out and tried to get back to sleep. I noticed that I was getting less and less tired, which is unusual, and also that it felt like I had to sort of make myself breathe. After around 30 minutes of trying to get comfortable, I noticed a rapid pulsing in my ear (my head was turned to the left and mild pressure was placed on the left ear). I looked for my pulse and blood oxygen device but couldn't find it, so I went downstairs where the blood pressure machine is. I noticed that my hands were shaky and my legs were weak, and my legs haven't been weak in at least two weeks. My blood pressure was 122 over 89, which is a bit high, but the heart rate/pulse was 136 (it's usually in the mid to high 80s). I took 10 mg Loratidine and waited, sitting down. The pulse came down to the 110 range within about 10 minutes, and then down to the high 90s, but when I got to look for something (unrelated to this incident), it rose again to around 110. It took about half an hour to get back to normal, but what caused this?

I did some research, and apparently histamines often rise during this time, even in those without histamine issues. Before I went to sleep, instead of taking the usual 10 mg of Loratidine, I took a bit less than half, no more than 4.5 mg, and I drank a bit less water than usual. I think this was the cause, as I had been doing very well for 2 weeks (or more) with nicotinic acid and wearing a mask all day to raise the humidity. Over the last couple of days I've also taken a bit less luteolin. The good thing about this incident is that now I will try taking a 10 mg Loratidine during the night if I get any indications I am getting a histamine surge. Anyone else experience something like this?

Here is a podcast in which the doctor being interviewed describes this phenomenon (fast forward to about 103:10):

 

[nerd]

Not always during the night, but I have experience with spontaneous adrenaline rushes.

Histamine is associated with MCAS, but it doesn't necessarily have to be the sole mediator of mast cell activation pathology. For example, cytokines could also be involved in the signaling. For the parts that aren't associated with histamine pathology, antihistamines won't work. Only HDAC inhibitors and mast cell stabilizers would help prevent the mast cells from overreaction.

Unfortunately, there is a Ketotifen shortage until August and this is the only available systemic mast cell stabilizer I know.

 

[xebex]

I experience similar but I think it’s cortisol related. If I wake up at 2/3am I will feel completely wide awake and energetic like I could run a marathon, it’s not anxy either just full on “woah I’m totally focused and awake and ready to conquer the world!” I’ll fall asleep around 6am then wake up at 8 feeling totally groggy. I’ve never actually checked my heart rate in these times.

 

[nerd]

I experience similar but I think it’s cortisol related. If I wake up at 2/3am I will feel completely wide awake and energetic like I could run a marathon, it’s not anxy either just full on “woah I’m totally focused and awake and ready to conquer the world!” I’ll fall asleep around 6am then wake up at 8 feeling totally groggy. I’ve never actually checked my heart rate in these times.

Cortisol has more like a long and lasting effect. What I experience is a sudden rush. A short heart racing and I automatically have to breathe in very deep like someone just revived me. A few moments later, it's gone.

 

[xebex]

Cortisol has more like a long and lasting effect. What I experience is a sudden rush. A short heart racing and I automatically have to breathe in very deep like someone just revived me. A few moments later, it's gone.

Yes for me this goes on for several hours. Probably adrenaline rush for you, I also wonder if it’s a sudden wake from deep sleep? That would also trigger an adrenaline response but not sure why you’d suddenly wake from deep sleep?

 

[MCASMike]

Cortisol has more like a long and lasting effect. What I experience is a sudden rush. A short heart racing and I automatically have to breathe in very deep like someone just revived me. A few moments later, it's gone.

In the past (hasn't happened for perhaps a couple of months), I would wake up and then quickly (not consciously) sit up, gasping for breath, and there was usually a slight adrenaline rush. That I think was a bronchospasm due to saliva going down my throat (which was due to post nasal drip). I was able to deal with that by always keeping my head to one side. This latest incident was different, as the adrenaline rush didn't happen for quite a while (perhaps 15 to 20 minutes or more). Now I know that when I start to get that weird sensation, to take a Loratidine, and I'll update if and when I feel the need to do that.

 

[nerd]

Yes for me this goes on for several hours. Probably adrenaline rush for you, I also wonder if it’s a sudden wake from deep sleep?

Yes, this can also happen from deep sleep or REM sleep. But it's not a nightmare or something. I can have peaceful or relaxing dreams, and yet, I suddenly wake up with my heart bumping and breathing in.

Besides MACS, another possibility are adenomas. Adenomas basically are just mutated cells. Latent infected cells can mutate anytime and just integrate minor changes into their metabolism, such as adrenalin production. These adenomas are very difficult to identify. I speculate that it is the thymus, but it could theoretically happen in many organs, including the brain. Most adenomas are only identified when the medical doctors know in which organ to look and if they are encapsulated types, because this makes them detectable in MRIs and scintigraphies. Atypical can't be detected this way. They don't grow for the most time, they look like normal cells, and don't necessarily cause a lot of pathology in the blood, unless triggered somehow when they immediately release hormones. These hormones can be short-lived, which makes them difficult to detect by tests.

Another possibility is a neurological reflex. Not unlikely either since neuropathy isn't uncommon with CFS/ME.

 

[xebex]

No Im not suggesting a nightmare, I’m thinking brain stem compression/inflammation causing a type of temporary sleep apnea. I get temporary sleep apnea in a crash and I will wake suddenly just as I’m falling asleep and get a horrible panic attack, now I know what it is I just wake very suddenly and I no longer panic, I never considered it an adrenaline surge before I just thought it was my body’s way of waking me up cos I had stopped breathing. But I guess that’s how it wakes you up.

 

[nerd]

No Im not suggesting a nightmare, I’m thinking brain stem compression/inflammation causing a type of temporary sleep apnea. I get temporary sleep apnea in a crash and I will wake suddenly just as I’m falling asleep and get a horrible panic attack, now I know what it is I just wake very suddenly and I no longer panic, I never considered it an adrenaline surge before I just thought it was my body’s way of waking me up cos I had stopped breathing. But I guess that’s how it wakes you up.

I don't think this is the case because of two reasons. First, I've been checked for sleep apnea and no drops in oxygen could be identified. However, I didn't have such an attack during the nights I had the device. I also have a home-use night-time EEG with integrated pulseoxymetry that has never detected apnea, though the detection is still experimental. Second, it also happens during the day. I breathe normally, and suddenly it happens. It can happen at any time.

 

[xebex]

Sounds mysterious for sure!

what is this EEG thing? Can you send me a link? I’d like to see if I can detect apnea, I’m certain I dont have sleep apnea except for when I’m ina bad crash so a sleep study for example would very unlikely pick it up and I’m not inducing a crash state in a hospital no thank you!

 

[nerd]

what is this EEG thing?

It's called Dreem, but they only offer their devices to clinical partners anymore. Either way, for apnea testing, hand-bound and cheaper devices might be more useful, devices like the Pulox PO-400.

 

[Strawberry]

Unfortunately, there is a Ketotifen shortage until August and this is the only available systemic mast cell stabilizer I know.

Here in the USA we have to get it from other countries, I just had some delivered a few weeks ago from India. Are you able to have it shipped from another country?

Have you tried neuroprotek? It also stabilizes mast cells well.

 

[nerd]

Are you able to have it shipped from another country?

I ordered some from a non-EU country, but it will take a long time to get here due to COVID-19 and it's also uncertain if customs approve it. Moreover, Indian generics like the one I ordered usually are poor in quality, which means lower doses than advertised.

Have you tried neuroprotek? It also stabilizes mast cells well.

I take Quercetin. But I don't think supplements can reach the efficacy of mediations even closely.

 

[Strawberry]

I take quercetin on top of the neuroprotek.

Another possibility, a DAO supplement to reduce histamine load? That is my most recent trial that is working fairly well.

 

[nerd]

Another possibility, a DAO supplement to reduce histamine load? That is my most recent trial that is working fairly well.

DAO supplements only reduce the histamine from the food. But histamine from the food isn't the real problem. It's just blowing air into a fire while methylation can also contribute to a reduction of histamine systemically.

Even to the mast cells, the histamine in the food isn't the primary trigger. My MCAS manifests in the upper GIT. It's not of much use in the upper GIT.

But it's true that one has to avoid high-histamine food with MCAS because MCAS reduces the histamine degradation buffer by repeated histamine release. This is when MCAS can become an indirect histamine intolerance. But real histamine intolerance is something else. It's a genetic DAO deficiency or HMNT defect.

 

[Strawberry]

DAO reduced my overall histamine load. I didn’t use it before eating high histamine meals. I was told it works by degrading histamine into particles that the body is able to flush. All I know is kidney is working for me.

 

[barabara]

I agree that not drinking enough fluid probably caused this. I got tired of drinking so much, so I stopped and now my CFS is much worse. Is the part about having to force yourself to breathe, something like your brain not stimulating breathing enough? I go into detail here.

https://forums.phoenixrising.me/threads/diminished-autonomic-functions-during-pem.84212/

Some people with that problem have "throat constriction", which you could interpret as allergies. I suspected that at one point.

Also, histamine doesn't just increase in response to foreign bodies, but various abnormalities, such as heat and skin irritation. If vasodilation is needed for some reason, histamine will probably increase to serve as a quick fix.

 

[MCASMike]

Last night I slept very well with no issues. I took 10 mg Loratidine and half an aspirin (about 160 mg) before going to bed, and used a cromonlyn nasal spray too. I forgot that for at least a few days I was no longer using this nasal spray, so perhaps that was the reason for the apparent adrenalin rush incident, though my guess would be that it was only one factor or it was no factor at all.

 

[Strawberry]

I know I wouldn’t sleep without my MCAS pills…

 

[MCASMike]

I haven't had that nasty adrenaline rush again, but I do feel somewhat strange during the night, and this morning, at a time when I usually wake up for the day, I decided to not move much and see what happens (keeping the sheet over my head so that I know that factor is controlled). After a few minutes my heart started racing a bit, then there was a little eye watering and nose running (not bad at all), but my throat became very dry and I had a coughing episode (I found a hard candy quickly and that helped end it). I'm thinking this is related to common biochemical changes, such as an increase in cortisol. Sitting up is not the issue because I woke up a few hours earlier and propped myself up at that point (after sleeping for several hours lying flat), with no problems. It seems internally-driven rather than external.