Hi hi my fellow EBV-ers!! Has anyone had any success with seeing an immunologist?
I have had chronic EBV since 2000 and have recurrent active EBV 6-8 times a year.
Infectious disease won’t see me until I’m basically dying.
Good evening, My Darlings!
I had an appointment with my Sleep specialist today. He switched me to 1 mg Lunesta on Thursday. I messaged him on Friday and told him that the 1 mg did nothing to induce sleep. Last Friday was day/night #6 with no more than 1-2 hours of sleep per 24 hours.
He did not message me back. I took another 1mg Friday night and again, nothing. Stayed awake until about 5am Saturday morning when I caught a little 1 hour nap before my kids woke up.
Fast forward to my appointment today, now day #10. He said to increased Lunesta to 2mg. I immediately said I would rather try 3mg since 1mg did absolutely nothing. I also reminded him AGAIN how many nights it has been since a full nights sleep.
He said “I’m not comfortable with that so let’s try something else……” 😳 I was stunned.
So 0.125mg of Triazolam. I took it at 7pm….. it is 8:36pm and I feel nothing.
I feel like I have taken every medication with ANY possibility as sleep as a side effect, and Seraquel was my only champion. Now that it has stopped working, I am 10000000000% convinced I will never sleep again.
I have been dealing with chronic insomnia, central sleep apnea, an undiagnosed sleep disorder that causes “narcolepsy” type-random falling asleep except my brain shuts down for a few secs and my body keeps going (like sleep walking but in a horror movie…. 3rd degree burns, multiple concussions, black swollen eyes, bruises from head to toe from injuring myself while “asleep” for a few seconds while walking around…..) for over 1/2 of my life.
No one can figure it out!
What sleep meds do I ask him for tomorrow?
I just NEED sleep before the injuries start…….
Happy Friday, my Darlings!
I posted my intro to this fantastic group of insomniacs at some point over the past week!! (Title was about taking 30mg of Ambien
)
(I’ve been awake since last Thursday June 11, so I can’t remember when I posted that or what year it is 🤦🏼♀️ i have managed to catnap 3-4 hours occasionally, at least I think so! Hahaha!!!)
After a solid 5 days of messaging my sleep specialist, only to be told to practice better “sleep hygiene” and “go to sleep at 10:30pm and wake up at 6:30am, because we all know that if someone just tells us to go to sleep, that fixes EVERYTHING, right?!? 🤬
He finally called in 1mg Lunesta. I have read lots of reviews comparing Lunesta and Ambien, mainly that Ambien makes you fall asleep quickly but Lunesta makes you sleep longer.
Clearly Ambien doesn’t work for me, so I’m definitely curious and anxious to see what my brain does with Lunesta.
Does anyone have any experience with Ambien NOT working but Lunesta working??
Sending you all light, peace, positivity, and sleep!
✨✨✨✨✨✨✨✨✨✨✨✨✨✨✨✨✨
UPDATE:
Unfortunately, 1mg Lunesta was as useless as my Dr’s idiotic advice. I’ve had chronic insomnia since I was 8, so almost 40 years. I didn’t start prescription meds until my late 20s-early 30s so I’m a pro when it comes to MOST sleep meds. I’m also a Ginger 👩🏼🦰 which also carries a gene mutation making it hard to anesthetize. I need higher dosages of novocaine for dental procedures, more meds for surgeries, stronger pain meds, and sleep meds. That’s what makes my insomnia even more aggravating!!!
Happy Sunday fellow insomniacs!!!
First of all, I am so very, very sorry we are all here. There is nothing worse, in my opinion, than laying in bed, on the couch, or wherever, staring into the void, knowing that no amount of “healthy sleep habits” or medication (for me) will shut off our brains long enough to create a peaceful, relaxing rest.
Just a snippet about me… I’ve had uncontrolled insomnia since I was 8. I am pretty sure I’ve taken almost every sleep medication known to man and my brain just overrides it like “ahhhhh bless your heart, I don’t think so!!!”. The longest I’ve been awake has been 21 days. Before being admitted for a sleep cocktail that shut me down for 72 hours, during these 21 days, I would fall asleep almost like I had narcolepsy. I suffered 3rd degree burns from falling asleep while making eggs. Black eyes and facial lacerations from hitting my head on various surfaces. Bruises all over my body, etc. Fast forward 5 years later and they still can’t figure out why this is happening.
I have been taking 200mg of seraquel for 3 years and it WAS my saving graceMy sleep specialist called in 7.5mg of Remeron so I will take my 1st dose tonight. I am not optimistic.
Last week I finally slept for almost 24 hours after being awake for 8 days. I am past the point of thinking anything or anyone can help. I am a very happy, extremely positive person but this just doesn’t make any sense to me!!!
I thank y’all for listening, and I’m sending you all light, peace, positivity, and sweet dreams!!!!