One year in and I still feel horrible

[ShinRyoku]

Every doctor I've ever spoken with has uniformly said to use benadryl sparingly and that tolerance can indeed develop.

Tolerance to sedating effect does occur with antihistamines like Benadryl, but dependence is much less of an issue with antihistamines than it is for benzodiazepines like clonazepam. Thus when tolerance develops with an antihistamine, it is usually not so difficult to withdraw the antihistamine.

For many people who take antihistamines for things like allergy and chronic hives, tolerance to the sedating effect is viewed as a good thing, where they can take the antihistamine long term while suffering less of the sedation side effect as time goes on.

There are other reasons to use antihistamines sparingly, including other side effects and potential medication interactions. But in general, the risk of dependence is much less with antihistamines than with benzodiazepines.

[drfaust]

Hello drfaust. I'm sorry I have nothing helpful to offer, I just wanted to say thanks for this thread. Sometimes it helps a little just to know there are others who understand what we're going through. My stats are different than yours, but I've also been laughed at by doctors, been mildly assaulted nightly by a machine that's not helping, still feel terrible, and often think of giving up. I have kids, so it's not an option. Along with diet and exercise, sleep is a pillar of health, but it's hard to know what it means until it's taken from you.

I'm so glad I'm not the only one!

Mostly what you read on here is success stories -- or worst case, people who took a long time but are now feeling the benefits. And when people like us ask for help, mostly what we get are "stick with it!" or "you're paying off your sleep debt! You'll feel great in no time!" But there are lots of us who don't easily fit into a checkbox category and for whom the typical treatment doesn't work.

The more I read about people with low arousal thresholds the more convinced that that is at least partly what's going on with me. My apnea is not severe. I only had one full apnea on my PSG study. But my sleep is completely screwed up. My psychiatrist and therapist both say that I need to talk to the sleep physician about my sleep issues because I won't be able to get a handle on my anxiety and depression until I am sleeping at night; the horrible sleep neurologist I saw last fall told me that my sleep is just fine (because the numbers that my machine gives say I don't have apneas), but that I need to "man up" and stop complaining.

My sense is that most sleep physicians want to put you in the "apnea" category, prescribe you a CPAP and move on -- it's like they're CPAP salespeople with extremely advanced degrees and who earn sh!tloads of money. But obviously, CPAP isn't cutting it for some of us. And the mouth splint made by the sleep dentist doesn't work either -- I wake up constantly and can't get continuous sleep.

I asked about the abnormal proportion of N2 sleep and lack of REM on my PSG and both sleep neurologists I've seen have said "Oh, don't worry about that, it's fine." But clearly I'm waking up constantly and never actually getting restorative sleep.

I'm sick of getting the brush off. It's good to hear I'm not alone, though

[drfaust]

For many people who take antihistamines for things like allergy and chronic hives, tolerance to the sedating effect is viewed as a good thing, where they can take the antihistamine long term while suffering less of the sedation side effect as time goes on.

Right -- so it stops working for sleep after a few weeks. Which means that if I use it regularly, it will cease to be helpful.

I was recently prescribed mirtazapine before bed, which acts as an antihistamine at lower-ish doses and can cause sedation. The sedation lasted about 4 days, and now it's like I'm taking a sugar pill.

[ShinRyoku]

Right -- so it stops working for sleep after a few weeks. Which means that if I use it regularly, it will cease to be helpful.

I take it 1-2 times a week and have been doing so for a few years. It continues to be helpful for me. I hope you find a solution!

[7200]

Ambient give you hallucinations but also does sleep deprivation/apnea. They’re called non psychotic epogogic hallucinations. 6 to 10% of the population have them, probably more. It’s a brain/sleep/dream thing. You wake up and apiece of a dream you don’t remember is projected out. I had a hallucination tonite because it’s my second nite with very little sleep beck of cpap issues. You have to have some ambient lite in your bedroom to see them. The first ones were scary. The most common ones are twinkling lites an spiders and snakes for some reason. A lot of people think their psychic phenomena. But they’re not. They won,t hurt you. A lot of docs don’t know about these so don’t let anybody tell you you’re crazy. You can look this up on the net. There are medical articles about it. Hope your issues resolve. It’s

[Cowboy Casey]

Doc, keep up the work... I am in your shoes since 2010, so 8 years (wow, just realized its been a long time) I am dealing with VA so things just take longer, it took me 3 years to see an actual sleep doctor and another year to see a neurologist.. she had me do an MSLT sleep test to check for Narcolepsy, well guess what, I have N without cataplexy and it sucks... so I, like you, also have apneas, I am on an ASV machine (that helped immensely) but getting up every hour or 2 all night long is about the worst thing in life...

Have you done an MSLT sleep test?

I do not have any more recommendations as your going through exactly the same things I am doing now, I just wanted to let you know there are others out here in the same situation....

[Thomas F.]

The trick to cpap is to use the least amount of pressure to get the job done. I suggest using fixed pressure and wear a cervical neck collar to help keep the mouth closed. I run at 4.8cfm and sleep till morning without air escaping through mouth. Took me a long time to figure this out because it's counter intuitive.

[TedVPAP]

The trick to cpap is to use the least amount of pressure to get the job done. I suggest using fixed pressure and wear a cervical neck collar to help keep the mouth closed. I run at 4.8cfm and sleep till morning without air escaping through mouth. Took me a long time to figure this out because it's counter intuitive.

I think you mean a pressure of 4.8 cm-H2O.

[Mikebear]

For many people who take antihistamines for things like allergy and chronic hives, tolerance to the sedating effect is viewed as a good thing, where they can take the antihistamine long term while suffering less of the sedation side effect as time goes on.

Right -- so it stops working for sleep after a few weeks. Which means that if I use it regularly, it will cease to be helpful.

I was recently prescribed mirtazapine before bed, which acts as an antihistamine at lower-ish doses and can cause sedation. The sedation lasted about 4 days, and now it's like I'm taking a sugar pill.

Have you tried 10mg Doxepin (capsule) taken nightly? I had many of the same issues you say you have, and that has worked for me. In a dose that low compared to what's normally prescribed, it's good for sleeping and knocking out chronic headache.

I can highly suggest that you try it, if you've never tried it before. It might take about 3 weeks before it really kicks in, but when it does, you'll typically sleep like a rock.

[yourbrokenoven]

You mention every sleep medicine I can think of except Restoril (Temazepam). Just a thought. It's in the Benzo family of drugs (like ativan/lorazepam, xanax/alprazolam, etc). I think it comes in a 15mg and 30mg.

*edit* wikipedia mentions restoril should be avoided in people with sleep apnea. I'm a nurse, and I didn't know that. Ah well.

[Cpapian]

Another doctor you might think about consulting is Dr. Steven Parks. He is in New York, I believe, which is a little closer than Australia. He writes books, has a website with info, and from what I have heard an expert on UARS. With technology today, you might be able to send him your sleep tests results and have a conference call for your appointment.

You might already do these things, but in case you don't here are two suggestions re doctor's appointments.

With respect to your doctor who laughed at you, please take your partner with you to your next doctor appointment. If your partner can't come bring someone to be your advocate. Advise your advocate/partner when you want them to step in, or not, and what you want them to do i.e. comfort you or scold the doctor, whatever you think is best. (This helps to temper the doctor's manner)

Also, you have a complex problem, so bring them a summary of your situation. Have someone edit it for clarity, remove emotional adjectives. Include a brief description of the problem, current medication, other non-related medical issues, what has been done and results and include a final section of the ramifications of this illness on your work. (This removes the emotion from describing your problem, eliminates recycling old ideas and, the doctor has to pay attention because it is no longer a "he said, he said" situation).

I don't have great sleep either, I fix it then loose it, then fix it and loose it continually. Luckily, I am retired so no work impact. But just minutes of REM (per my FitBit Charge 2). I have been reading about sleep architecture and one thing I noticed is the purpose of REM is unknown. People without REM do not show problems with memory and cognition. Maybe that is why doctors are saying your sleep is fine.

What language do you talk in when you are asleep?

[Wulfman...]

I posted updates after 3 and 6 months on CPAP, when I was still feeling terrible, and I was told to keep with it.

I'm back again. It's been a full year of near 100% compliance, and I have absolutely miserable sleep, I wake up feeling like I've been punched in the face, and my ESS is around 14.
Is there any hope? Or should I give up?

Additional Comments: Pressure 7-11. RDI of 12, most RERAs in PSG study; AHI under 1 with CPAP; still feel terrible.


Have you TRIED using a straight pressure setting?
Some of us find that the changing pressures during the night disturb our sleep.


Den

.

[drfaust]

Doc, keep up the work... I am in your shoes since 2010, so 8 years (wow, just realized its been a long time) I am dealing with VA so things just take longer, it took me 3 years to see an actual sleep doctor and another year to see a neurologist.. she had me do an MSLT sleep test to check for Narcolepsy, well guess what, I have N without cataplexy and it sucks... so I, like you, also have apneas, I am on an ASV machine (that helped immensely) but getting up every hour or 2 all night long is about the worst thing in life...

Have you done an MSLT sleep test?

I do not have any more recommendations as your going through exactly the same things I am doing now, I just wanted to let you know there are others out here in the same situation....

I haven't done the MSLT. From my understanding, they only score those tests if you got 360 min (6 hours) of sleep in your PSG the night before. In both of my sleep studies, I got around 200min of sleep before waking up and not being able to fall back asleep.

The other problem -- I am on a REM-suppressing antidepressant drug, which makes it very hard to diagnose N. I had 0min of REM in both of my sleep studies -- none at all.

I'm seeing a new sleep neurologist tomorrow, though. I'll try to mention this.

[drfaust]

For many people who take antihistamines for things like allergy and chronic hives, tolerance to the sedating effect is viewed as a good thing, where they can take the antihistamine long term while suffering less of the sedation side effect as time goes on.

Right -- so it stops working for sleep after a few weeks. Which means that if I use it regularly, it will cease to be helpful.

I was recently prescribed mirtazapine before bed, which acts as an antihistamine at lower-ish doses and can cause sedation. The sedation lasted about 4 days, and now it's like I'm taking a sugar pill.

Have you tried 10mg Doxepin (capsule) taken nightly? I had many of the same issues you say you have, and that has worked for me. In a dose that low compared to what's normally prescribed, it's good for sleeping and knocking out chronic headache.

I can highly suggest that you try it, if you've never tried it before. It might take about 3 weeks before it really kicks in, but when it does, you'll typically sleep like a rock.

Yes, I have. I tried it for a week. It made my nightmares horrific -- I was screaming and using profanities for hours at a time according to my partner, and I started having REM behavior problems -- I jumped out of bed twice trying to kick someone in my dream. I stopped the doxepin and the REM behavior issues stopped, and my nightmare level went back to my normal (very disturbing) level.

[drfaust]

You mention every sleep medicine I can think of except Restoril (Temazepam). Just a thought. It's in the Benzo family of drugs (like ativan/lorazepam, xanax/alprazolam, etc). I think it comes in a 15mg and 30mg.

*edit* wikipedia mentions restoril should be avoided in people with sleep apnea. I'm a nurse, and I didn't know that. Ah well.

Yeah, I've never tried temazepam. Just clonazepam, which usually does a nice job. I just try to avoid using it because I don't want to develop a tolerance.

And I think the reason some sedatives are listed as not recommended by people with apnea is the fear that they could make apnea worse. But this seems a problem only if the apnea is untreated (no PAP), and also, Danny Eckert's research I mentioned above shows that in people like me (low RDI, low O2 desaturation, no snoring, not obese), sedatives actually make apnea *better* by inducing deeper sleep so that muscle tone can be restored before an arousal occurs.

But I think most doctors don't know about this line of research. I'm going to go in to my doctor's appointment tomorrow with papers to cite, just in case.