10 weeks out, some improvement

[[un...]]

I am 10 wks out now. In the last couple of weeks I have experienced less zero nights of tossing and turning. 5 out of 7 nights I have slept anywhere from 1-3hrs. It isn't deep yet but it reliefs some of the extreme anxiety and feeling that I am losing my mind. It takes me away from suicide territory. Ideally, 3-4 hours of deeper sleep and I would feel like I can think better and start the process of getting back to work and reintegrating into society. It would also be great if my head pressure lessened sometime soon. I am really hoping I can get to this level within the next two months. I hope this isn't being unrealistic. Being disabled since December feels like a really long time. 

 

If this gives people in acute any reassurance that things do change for the better that is great. I felt like this was going to be permanent for a long time but now I feel like there is a good chance of getting better. 

 

For sleep, I have done the following:

Cut way back on caffeine.

Cut out sweets.

Eat high protein meals and shakes. 

Keep the same sleep and wake time within an hour or two.

Wear blue-blocking glasses after 9pm.

Get about an hour of sun per day.

Epsom baths two hours before sleep.

Take 500mg taurine and 0.5mg melatonin and hour before bed. 

Drink water with camu berry powder (high vitamin c to reduce cortisol) and 1tbsp of apple cider vinegar one hour before bed.

 

 

[[SS...]]

this is great news!  I hope your progress continues steadily upward.  What type of protein shake are you using?  I had always used isagenix for years before valium WD but can't tolerate it now - its loaded with amino acids - several of which are excitatory.  So, i had to eliminate it which was tough .  It's nice to have a quick meal that doesn't involve lots of cooking..... so - if you have a recommendation on a protein powder that doesnt trigger anxiety - that would be great.

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I hear ya. I used to use whey isolate unflavored or egg white powder. Those are ideal if you are active. Whole protein and easily digested. I am giving those a break and I use VegaOne now. I am an athlete and I know this isn't ideal but it is what I am settling on for the next few months. 

[[Fa...]]

Glad you are getting some sleep and I hope it will improve! Lately I have been able to get about 4-5 hours sometimes not always tho. Any improvement is good but I hope it keeps getting better!

[[me...]]

Great to hear uncomfortably! You are doing all the right things, and I'm sure you'll continue to improve. 

 

My only suggestion would be to see if you can cut out caffeine entirely. I know it is really tough not to have that "boost" when you feel like such a zombie in the morning. But if you can switch to decaf your body will adjust and you'll start to feel okay in the morning. If you do drink caffeine, drink it early and don't touch it through the day. It directly impeded the chemical process that we need to happen in order to sleep.

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Hey Meowie,

Thanks for the encouragement. I only have one cup of regular coffee occasionally and it is always before noon. I know it has a long half life so that might not even help. I think it takes around 12hrs to eliminate 75 percent caffeine. I am using decaf most of the time. It sucks, I love coffee more than alcohol.

 

I kinda jinxed myself with that post because my last couple of days have been shittier- only 1hr sleep both nights. This is really getting to me. Oh what I would give for 4hrs regular sleep. 

 

Even though I am miserable I am trying to get out. I just wish I felt well enough to work.

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I am considering trying doxylamine succinate twice per week. But then again I am fighting that urge because I also think it is a good idea to allow the brain to learn how to sleep on its own. What a conundrum!

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After a week of getting 1-3hrs sleep per night I am back to zero for two nights in a row. This is getting me really down and more depressed. My anxiety has gone up a lot too which makes it hard to fall asleep. And my head pressure and burning is relentless. Each of these 4 symptoms really make life a living Hell. Don't know what to do. 

[[Fa...]]

Sorry you are feeling worse again I hope the sleep comes back to you. Still not great here either

[[un...]]

Thanks faery,

 

You are in my thoughts too. I have had a third night in a row with no sleep again. Breaking me down. The head pressure and brain burning are at an extreme level too. Really would like to know on average how long it takes for these to ease up to livable levels. 

[[Fa...]]

The insomnia is wearing me down fast too...I do get some sleep just not much. I have head pressure off and on is yours constant? I wish there was some way to know when it would get better. Have you tried anything to help with sleep?

[[un...]]

Hi Faiery,

 

Head pressure is pretty much constant - either bad or horrible. I might have got 1hr sleep last night. Freakin tired of this shit already. My hope is that I get 3-4hrs every night by month 4 or 5. Hope that isn't wishful thinking. I haven't really been taking anything other than fish oil, magnesium, and melatonin. Any suggestions? I have tried many things already. 

[[Fa...]]

Sorry I wish I could recommend something but I have tried just about everything OTC and none of it has really helped me significantly. I tried melatonin and unisom and calms forte and even took seroquel for two days which helped the first night but not after that so I quit with it instead of upping the dose. I've had some nights with 3-4 hours I think so I know it's possible that it will get better. In the beginning I had several nights with 0-1 hours and taking a nap is still impossible. Have seen some people have success with tart cherry juice extract but it basically is the same as melatonin I'm pretty sure. Would be much easier to deal with everything else if we could just sleep!!! I'm really freakin sick of this shit already too My dr says the lower doses of melatonin are actually more effective. I took 10mg time release so maybe that's why it didn't work but who knows. Nothing seems to help! 😩😴

[[un...]]

Yup,

I tried high and low doses of melatonin. Didn't seem to work. Past 2 days I am back to two hours of sleep. Come on 4 already! Head pressure is torture and unrelenting. Today I said fuck it and helped a friend paint his house then we tossed and hit around a baseball. Felt drained and like crap but maybe we just gotta work through it. I am going to start exercising intensely - don't care if it kills me at this point.

[[MT...]]

Good move declaring frak it and hanging out with your friend. It really goes against the grain but it's a sanity saver to go ahead and do stuff even though you're desperately sleep deprived and feel awful. If for no other reason, it's distracting and helps pass the time, but I also think a proactive approach helps the recovery process. Every little bit helps. And planning to start exercising is a great idea. Don't feel like you have to wait until you feel better or have a night with some sleep. It's quite possible to exercise after absolutely no sleep at all. For days. You know I've done it. It won't kill you but it will likely feel different than exercising pre wd and insomnia. Keep your expectations low and go slow.

[[Fa...]]

I hope the exercise will help many people say that it does. I don't think it can hurt at this point. I'm desperate to try just about anything too. Tired of just hoping things will get better!

[[un...]]

MT,

Yeah, at some point you gotta just do things that used to be fun and healthy and not wallow in the torture. It is horrible being stuck in your own head. I am learning from you to just try to keep going. If I don't do anything I will feel like my life has been totally wasted. Today I did some yoga and foam rolling. Holy crap, the foam rolling was a lot more painful than it has ever been. Not sure if this is due to inactivity or that wd increase all perceptions like pain. 

 

The head pain has gotten actually worse though and it is equally as bad as my insomnia if I were to rate it. Now this is a symptom a few people are stuck with for years. I am not sure if it is worth going to a neurologist to see if they can figure it out and give me advice or tips. I really hope there are signs that this will improve and go away. 

[[MT...]]

Good job, UN1 doing some yoga and foam rolling. It seems most of us experience that crazy sensitivity from the nervous system being wound up. Sleep also plays a huge role in pain so with less sleep you're going to have more body pain.

 

I don't see people getting helpful advice from neurologists on these symptoms. Remember the hammer and the nail story. When all you have is a hammer, everything looks like a nail. To surgeons, everything needs surgery. To other docs, it all needs meds. They want to help and those are their tools.

 

Yes, a FEW people get stuck with certain symptoms for years. Please remember, the vast majority DON'T. Or if they do, they're usually dialed back in intensity. Withdrawal/sleep deprived mind loves to tell us stories like: "My wd will be extra long, extra severe. I'm broken/damaged. This is permanent. I can't do this. I have some other serious illness because surely I can't be this sick from just wd. I have fatal familial insomnia."

 

Here is one of my favorite metaphors for living with all of these voices in our heads:

 

[[un...]]

MT,

 

Yeah, I have a problem in assuming the worst maybe to prepare myself or it is depression coming through. I had another night of 3hrs sleep. That is the third time it has happened in 10 days. Not too bad - every other night would be good. I have done 80 days of this unknown sentence. I am beginning to believe this probably won't last more than a year at the rate of improvement lately. But I am still concerned about the head pressure. I am likely going to a clinic that deals with benzo withdrawal just to see what they say.

 

I am working through all of this. I went on a 4hr road trip yesterday and drove there and back. I went hiking a bit and beach hopping. Check out Tobermory, Sauble Beach and Flower Pot Island. I had never been to these places and they are considered destination hot spots in Ontario.

 

I will keep moving my feet. Our bodies are like a body of water and stagnation is not healthy.

[[MT...]]

Baby steps. You're getting there. Good for you doing that road trip with hiking, etc. As for the head pressure, how can your head not have symptoms with as little as you sleep? I think it's a side effect of insomnia. Either the head pressure or headaches. If you can find a clinic that truly understands benzo wd perhaps they can reassure you. Most of them really just do detox