Hi All  

So this is kinda two separate symptoms that may or may not be related. I am wondering if anyone here has experienced what I call forced sleep episodes......they come on very fast with no warning... its like having a switch flicked or like being shot with a tranquilizer dart.....one minute I am fine and then all of the sudden I literally am fighting to keep my eyes open....I have this overwhelming urge to sleep but its not a good feeling....my heart beat gets very strange and my head gets really foggy and I feel very anxious.....like how you feel in the beginnings of sedation.....most of the time if I get up and move around I can stop it but sometimes its like I pass out but only for a few minutes and then I jolt upright. I have been having these episodes since 2007 and have had everything checked....was diagnosed with dysautonomia/POTS and recently MCAS....these episodes have recently gotten worse since I titrated down my florinef (but I experienced them before any of my meds) has anyone ever experienced anything like this? is it a mast cell reaction possibly? Also every day I have been suffering from severe leg aches so bad they make me cry.....it doesnt feel like muscle pain (my electrolytes are regularly tested and I get lots of potassium, calcium and magnesium)more like vascular and bone pain (similar to how your legs can ache in the heat of summer)....I am at a loss of what could be causing these symptoms and would appreciate any insight anyone can offer. My specialists are at a loss..... the only other thing that has come up recently is I have a slightly enlarged liver from the florinef.....

Bren

Thanks Ruth

I read it and some of the symptomology is definately similar....interesting about the PGD-2.....I think there may be a relation there as I have always responded well to NSAID and aspirin but have horrible reactions to opiates.....I may try taking aspirin the next spell and see if it helps

Bren

Hi Joan

My current meds are; 150mg ranitadine 2x daily, 20mg claritin daily (tried all other ones and terrible reactions), 400mg gastrocrom daily, benadryl as needed, .05mg lorazepam 2x daily, .05mg florinef 3x weekly and I try to adhere to a low histamine diet....most supplements I do not react well to like everyone else. I suffer from many types of urticaria (hot/cold, exercise induced etc) the florinef has always helped with alot of my symptoms and I could never understand why it was helping with things it had no business helping I suspect the anti-inflammatory part of it was treating some underlying issues. I have tried upping my other meds but it just seems to be heading me into a total tailspin but if I up the florinef again I risk getting full blown Cushings....so I am in a real bind

bren:
I get only the tiredness issue like you. It's bizarre full awake then can't keep my eyes open, but only on weekends, never during the work week. What I've been trying is to hit the caffine as caffine doesn't affect my skin pain at all. Usually happens around 1pm or 4pm.
So i've been drinking a strong cup of coffee about an hour before these times & seems to work if I've got a good nights sleep. If I have a bad night it doesn't matter.& I'm Nasids intolerate so can't try aspirin. Also I don't eat alot so tried small meal around that time didn't help at all.
MikeV

Hi!

I see you were taking Claritin and were having trouble with some of the other antihistamines?  You sound a lot like me!  I am drug lightweight. I had some similar problems once, so I thought I would share what worked for me.

When I was taking Claritin, I had a little side effect that I would get these episodes where I seemed to kind of have a little bit of apnea right before I went to sleep.  

I actually went in for sleep testing, and it turned out that I was not transitioning normally from waking to sleeping.  My body would go into "sleep mode" while I was still awake.  My respiratory rate would slow down, I'd skip a breath, jerk a little.  It was kind of creepy.

So, I actually tried different brands of the generic for Claritin, and I found that when I used the Loratidine from Sam's Club, this problem went away.  Not sure if it was truly related, that would be hard to say for sure, but it worked for me. Everyone's body reacts different to medications, even different brands of medications.  You sort of have to watch what works best for you.

Also, I was getting some restless leg syndrome, kicking a bit, and cramps in my legs at night.  In my sleep workup they noted a little bit of anemia.  Low iron can contribute to the exaggeration of such symptoms.  

I started to eat a little more red meat and took my vitamins, and that went away too.  Now, I only rarely get this kind of thing.

Sometimes the symptoms are due to masto, some things are drug reactions,  perhaps other medical conditions that you are having,etc.  It takes some time to tweak out what is the culprit, and that varies by individual.