Sorting Out My Episodes. Forced Sleep Anyone?

[DoozlyGirl]

Hi all,

I see many of us have been looking at mast cells as a possible trigger for our screwed up autonomic nervous systems. I've had prominent food and medication sensitivities and random episodes of anaphylaxis years ago(requiring epi/ambulance ride, etc), but these issues have resurfaced. Once I looked up the clinical definition of anaphylaxis, I realized that all it takes is one skin reaction(like flushing, hives, itching) and a second organ system involved, ie GI (vomiting, big "D", abdominal pain) or cardiovascular involvement (like orthostatic hypotension or even hypertension), and then angioadema and swelling are listed. This is making me reevaluate my current episodes. I am nearly continually flushing, with near daily episodes of GI evacuation, so been adding antihistamines and can see a difference. I see my autonomic neuro in a few weeks. and my derm two weeks later.

Here is my big question for today. Has anyone experienced forced sleep, where it feels like you have been given sedation? I still can't place this one major symtoms. Is it mast cell related or OH related, or something else?

Today, I had lunch with a friend in a local mexican restaurant that uses only fresh ingredients. BTW, I've never reacted to fresh mexican food. The 2 hour lunch went well. I then came home then felt doozly, which is our family word for I HAD to go lie down. By that time I had chills, the inner core type, blurry vision, then my eyes got really heavy, where I couldn't keep them up any longer. It feels like I am getting sedation, then I am out cold for several hours. I heard the phone ring twice, but I am unable to come to. I awoke 3 1/2 hours later, somewhat refreshed and feeling fine. Sometimes I get these episodes right after I wake in the morning and have to go back to bed for several hours. I've have had these episodes for five years, and had to work later in the day to cover the time off of work. Haven't been able to work in 2 years . The only trigger I can possibly come up with today is perfume from woman in next booth, but I get these same episodes without exposure to perfume.

Can anyone relate to this experience and have you figured out what triggers them? Thanks for your responses. Lyn

[brethor9]

Hey Doozlygirl

I suffer from the exact same episodes as you describe......I always liken it to what narcolepsy must be like when an episode comes on.....I literally cannot stay awake. Its actually kinda scary....like you I get the chills...low core temp and my heart rate gets very low.....I actually do everything in my power to stay awake because my heart feels so weird I worry about passing out.....sometimes getting into a warm bath and taking a zantac helps me for whatever strange reason.....I wish we knew why it happens

Bren

[Lemons2lemonade]

I have learned that going to sleep will skirt a pots episode. The more I fight to stay awake the more violent my pots symptoms become.

[heissovereign]

Wow, I have these as well. I have them on and off I have had them everyday for the past week until today. I would wake up get my baby her cup and after wards get her back to sleep, take my Florinef and have to go back to bed and will just put my oldest who is asleep, in bed with me with the door closed and will passout and be out for about 3 hours lol or until my daughter has jumped on me enough to get me aroused to get up, but it takes alot i'm like you I can hear everything but can't move, the times I do actually get up I have a migraine and my heartrate is high and bp low. I agree with lemons it is always better for me if i can, to just go to bed.

[DoozlyGirl]

Hey Bren and lemons,

My episodes come on so quickly, no time for a bath. I do have more warning than when I've actually passed out, but in those cases I was alert, but groggy within a minute or so. During these episodes, my sitting BP is really high, so I don't pass out like in the past. I have minutes to get into a comfortable position on the couch, recliner or bed. I am most concerned about the really slow HR. Lived with a resting HR in the 40 's for 6 weeks after trying a beta blocker two years ago. My resting HR went from 120's to 40's after 1/4th of a betablocker for 5 days. Another reason to suspect mast cells. I too have tried to fight it, and then am far worse off then surrendering and taking that forced nap. Will see if a zantac and zyrtec helps at all.

Thanks, Lyn

I don't have POTS, but have documented my systolic BP dropping 78 beats within a minute or so.

[DoozlyGirl]

heissovereign,

I see you are new to this board. Welcome. I have learned so much from this forum, which guides me in my quest for health.

I am wondering if you have food, medication or environmental allergies or sensitivities. I am trying to figure out if this forced sleep thing is related to my BP issues or possibly mast cell related, so I can attempt to find a doc who may help me understand and treat this debilitative symptom. I have figured out how to manage so many of my other issues, but this one has me and my team of physicians stumped!

Best wishes in managing your symptoms,

Lyn

[HopeSprings]

I think I experience something similar - it's just this sudden, overwhelming urge to sleep during the day... it's I have to sleep. Unfortunately, I can't give into it with children to take care of and/or pick up from school. I always feel horrible after a nap anyway, so it's probably a good thing. But it's a very strong force and hard to fight back against - I know what you mean. Can't think of a trigger.

[lillybits]

if i am on the couch i will try and slide over to try and get comfy. i slept for 13 hours last time that happened... it would be nice to be able to make it to my bed when that hits...

[heissovereign]

Doozlygirl, this symptom has really just gotten worst since this last episode I had. I don't have any triggers, my heart rate stays at around 45 when resting, and so i just get so weak that i just pass out wherever I am,

I used to just try and get up early and just never sit down so I could get things done, because if i sit down my HR would drop and i would pass out , but now I can't do that since I have gotten worst I have to sit alot during the day because my HR goes to high when standing to do simple things.

Sitting my heart rate is 40-50 BPM i stand and it jumps to over 100 and just keeps climbing if i do anything, it gets up to 170 if i keep going, especially when I am doing dishes. so besides just my bradycardia i can't think of anything else that would cause mine, I haven't been diagnosed "POTS" I haven't had much testing from a qualified doctor.

I just know resting my hr is too low and standing my hr is too high and causes me to faint either way. this last time last wednesday my HR was low and i was weak and started having my neck, head, and shoulder pain so I got up to leave church and almost passed out right before sitting in a chair while my husband got the kiddos, then i was ok just weak i was talking to one of the pastors and drank some water and then collapsed my HR dropped too low and i fainted and quit breathing temporarily. since then my symptoms are exaggerated. Sorry I hope i didn't scare anyone but seeing this is a forum where this happens I hope i didn't offend anyone.

so, I don't know about triggers but I don't understand much about this myself, I have had all of these symptoms some since birth and others started at 6 and others at 12. I would think however that it is just your low HR, because thats how it is with me, My respirations drop because it doesn't seem like i need to breathe much and i just drift off. sorry I hope this helps I am just as if not more confused than you.

[Katybug]

I definitely have the exact same episodes that you are talking about doozlygirl. A year ago, at this time, I was having them so badly, that is was sleeping 16-20 hours a day. I could only stay awake an hour or two at a time. Now, that I have learned to manage things a little bit better (that means I know I can only be upright for 2-4 hours a day), I seem to get this symptom as follows:

-after I eat a full meal (just a snack doesn't do it)

- sometimes when I wake up and try to be upright (this is on days when POTS is extra bad)

- always in the afternoon sometime between 2-4 (I have to nap. My body will revolt and I become extremely symptomatic if I try to resist.)

[Lemons2lemonade]

Hey doozly, what did you mean about beta blockers and mast cell?

[Lemons2lemonade]

Another thing to note is that these "naps" bump me up to sleeping around 14-16 hrs. per day

[DoozlyGirl]

Thanks everybody for your responses. Does the onset of these forced sleep episodes feel as if you are getting IV sedation prior to surgery or do you have a different way of describing them? Do you know if it takes awhile before you are out cold or do you go directly into deep sleep?

Naomi, I used to be able to override these sensations, but after 5 years they now are too strong for me to overcome.

heissovereign, no worries, no one will be offended by your symptoms. Most of us have personally faced the very things you are describing. While your jump in standing HR definitely points to POTS (>30 beats), but wondering what your BP is doing at this time. Do you take your vitals while laying, sitting and standing, to get a rough idea of your orthostatic tolerance? Do you own a home BP machine? If you need some help in how to properly take othostatic BP/HR, just let me know and I'll walk you through it. Just the other day I posted something on this very topic. I found that once I documented my screwy positional BP/HR and then a RN documented the same thing, my autonomic testing was expedited leading to a quick diagnosis 4 weeks aftrer I figured out my orthostatic hypotension was my major culprit. When my HR gets really low or after my BP plummets, I will lay with my legs up on the back of the sofa, on a chair, or up a wall, which will get the blood back to my brain. I often feel better and can even raise my HR a bit. Keep reading the posts and ask questions when you have them. Everyone on here is so supportive.

Katy, if full meals prompt these sleep episodes, have you tried splitting your meals into smaller ones? I changed my eating this poast summer and have had fewer sleep events since then. And now that you mention it, I ate more than I usualy do the other day just before my last sleep episode. Hmmmmmmm.... Still get them in the morning though.

Keep pushing on, Lyn

[DoozlyGirl]

lemons, I have been reading about medications that trigger mast cell activation from multiple websites and betablockers are known to triggger for mast cell degranulation. I guess this could explain why everytime I have tried a betablocker, I get weird symptoms. I am looking for a reference for you and when I googled betablockers and mast cell activation, a page from Dinet on causes of POTS lists mast cells. Go to the last line, there is a reference to an article.

Have been going thorugh my current and past medications looking for mast cell triggers, 1) looking at class of meds -- betablockers, NSAIDS, antibiotics, anesthestic drugs, narcotics, 2) looking at inactive ingredients, such as my allergens --lactose, corn starch, FD&C red and yellow dyes are known to trigger urticaria and flushing. I am now converting my OTC meds to ones that do don't contain my allergens/triggers ie converting peach/yellow/red colored OTC meds to white ones, trying to eliminate lactose and corn starch if possible. Trying to lower my trigger threshold so I react less.

Best wishes, Lyn

[HopeSprings]

Yes, Lyn - it feels like sedation. I have said this exact thing to my husband "It feels like I've been drugged or sedated." If I could go with it, I'd be asleep immediately. I have noticed in the past if I allow myself just a short nap, it does seem to re-set things a bit and I feel a little better, but if I allow myself to sleep deeply in the middle of the day for like an hour or more, it makes me feel HORRIBLE.

[brethor9]

My episodes always feel like narcolepsy.....a sudden switch flicked on and all of the sudden I am fighting to stay awake....it is like a drugged state.....I have a friend who does have narcolepsy and she said it sounded similar but I definately dont have narcolepsy....I wonder if it might not be an insulin spike or something like that? Ive gotten used to them I dont have as many since I cut out gluten, carbs etc....and I am also just recently being treated for mast cell issues.....so maybe its related......

Bren

[heissovereign]

Doozlygirl, Yes it is just like being sedated. I do have a home BP machine and I usually write it off as just my low HR so i don't check my BP during those, I am usually too weak during these episodes I can't use my hands, arms, or legs very well. If i move my arms then my hand just flops. it's very strange.

But I will alert my Hubby to take my BP next time this happens. it's been alot more in the evening times, I will be wide awake and then just start losing motor skills and go out of it. It takes alot for my hubby to wake me after this has happened.

I took my BP yesterday after laying for 10 minutes it was 133/75 with my heart rate too low to read, my BP machine just read LO. so I sat up and took it and my BP was 116/73 and my HR was 40. so I stood to see how much it would change and it went to 94/50 and my HR went to 68 and then i was going to try to keep standing to get a reading after 3 minutes like my doc does and I became very symptomatic with the headache and rushing feeling to my feet, they turn a purplelish color. I started getting too dizzy my HR went above 100 so I sat and it plummeted back down to 45 which i get chestpains when that happens.

I had a treadmill test that i lasted a minute on back in October. My HR laying was 40 sitting was 100 and just standing on the treadmill going slow for less than a minute spiked to 160 and i almost fainted so they ended it.

I do appreciate the help, and advice. I found a chart on dynakids for taking BP and HR laying and standing and to take them in the increments of every min for about 5. is that what you do? if not I am all ears on how to do this to at least have a log for my next visit next month at the Cardio. Thank a bunch

[Dizzysillyak]

I used to do this all the time before giving up gluten. That felt like narcolepsy because my body would

get limp, my brain would check out and I had no choice but to sleep.

Then I figured out, via a gtt + insulin that

I also did this when my glucose levels were changing. Not sure if it was the drop in glucose or increase in insulin. I was very nauseas during this test and notice that happens whenever I overdue sugar or high carb or high glycemic foods.

But, I also discovered that eating chicken or turkey will make me a little sleepy the first time,

And wipe me out all day if I have it more than once. I usually eat this for dinner only now.

Fwiw .. I have a freind who's glucose level drops to 40 if she eats dairy.

My reactions seem mild next to her's.

It's just so weird how different foods affect us so differently .. Tc .. D

[Katybug]

doozly,

Yes, mine feel like sedation as well. And, yes, I have changed the way I eat. If I have anything to do on a certain day, I try to schedule it between 10-12 so I can get over the morning POTS issues but not eat until after I have completed the task. I also graze more than eating meals. But, since I still am staying with my mom, she makes dinner and I feel bad not eating so I often pay the price after dinner. I try to eat a small enough portion not set off any symptoms, but, alas my mom is a really good cook and sometimes I can't resist.

[DoozlyGirl]

I agree about about the switch being flipped. I've been saying that for years. Something similar to narcolepsy, but different.

Regarding insulin, I have spent the past 6 months chasing my unstable blood sugars. My insulin levels are elevated, but my sugars haven't dropped below 60, so I don't have absolute hypoglycemia. I do have reactive hypoglycemia triggered by food ingestion. My autonomic neuro feels my orthostatic BP is causing my sugars to plummet. Even though I have tested negative for gluten AB several times, I know I feel better with limited gluten but don't do well gluten free. Will pay attention to gluten again, especially now that I am looking at mast cells as a trigger and am connecting my flushing with GI symtoms and BP drops.

Thanks for the responses. They really help me look at my situation with other perspectives.

Lyn

[brethor9]

BUMP...... has anyone been experiencing these sudden sleep attacks or forced sleep? I recently lowered my dose of florinef (due to possible pre-Cushings and enlarged liver issues) and have noticed they are coming on again. They come just out of the blue...no rhyme or reason.....it is not like I need to lay down and sleep but feels more like I have been hit with a tranquilizer dart or the flick of a switch. I have been continuing with my mast cell protocol but wonder if the florinef was keeping some type of reaction under wraps? The episodes are scary because not only do I feel like I need to sleep but my HR drops and my breathing gets slow also...... so very weird.....

Bren

[Katybug]

Weird....I just started having them badly again as well. I don't know why I didn't write this the first time but I had night and daytime sleep studies and I am dx with severe daytime hypersomnia. And, I get ridiculously cold right before I have to sleep and I can't get warm unless I sleep. Its like my body is being forced into hybernation to maintain homeostasis. It's been going on for about 3 weeks again.

[AllAboutPeace]

Oh my gosh...YES! I have had this over the last month or so with more frequency. It's such a strange, uncomfortable feeling. I haven't checked my vitals because when it hits, I just literally have time to lay down on the nearest couch or bed. To me, it feels like passing out laying down - the dart is a good analogy Sometimes I can hear things around me but can't react or move and other times I am completely out. I haven't been able to figure out a trigger. I always wake up after a short time (feels like 5 minutes but yesterday I looked at the time when i woke and it may have been 20 mins to 1/2 hour) with an adrenaline surge. It happens every time. I feel awful waking up like that and once the surge settles and I get over the grogginess, I can get up and function again. I'm curious about what my vitals are doing at the time because my baseline is already Brady and low BP.

Thanks for bumping this thread!

[brethor9]

glad to know I am not the only one but hate that you guys are experiencing it too! Peace I know what you mean.....its like after awhile the sedation feeling wears off and I am completely awake again......what the heck is that all about and what the heck is causing it? I know its not a presyncope episode and I don't think its a sugar issue the only thing I am thinking is it could be a mast cell thing? but if you guys get them too maybe not.......all I know its freaky and I want to know a cause for it?

Bren

[Ash]

I get something a lot like this too. I was talking to a friends who's daughter has CFS and she experiences it as well and calls them "body comas" I liked the name so that's what I have come to term mine too. It is like my mind is active and I know I need to get up and do things or even move my body into a more comfortable position but I can't like my arms/ legs/head weight a billion pounds and as much as my brain is telling me to move nothing is happening, if I don't have to force myself to get moving (takes a good hour) then I will fall asleep and generally feel a little better upon waking. I do like the dart analogy because that is exactly what it feels like, a being shot with strong sedative.