My health is really suffering

How can I keep going waiting to heal like this?

 

2nd night zero sleep, my left eye looks like I’ve had a stroke. The muscle around it droops and it looks like my eye has retracted into my skull.

 

My heart rate is so low. Its in the 50s, and I have near constant palpitations.

 

Yesterday my dr said my blood test showed I am boarderline hashimotos.

 

I don’t know how to keep going. I need sleep so badly and it’s taking too long. Did anyone else with severe insomnia have health battles like this too?

 

Im not trying to scare anyone but I’m afraid  :'(

Shayna, I know exactly how you feel.  I'm becoming convinced that at my age unremitting zero sleep will soon do me in.  I desperately started taking Ambien every other day to get at least a bit of sleep on those nights.  Now I've started to experience the same hyper-agitated feeling during the day after Ambien that I felt during withdrawal from Klonopin.  Apparently the Ambien is having the same GABA receptor effect as Klonopin so I have to stop taking it.  I don't know what to do next.  I realized this today and I can't say anything about it to my wonderful family who have gathered here after a 2 year separation.  Everyone is so happy and I can't imagine spoiling it all.  So our circumstances may be different but our agony is the same.  All the best to you Shayna, I hope we both get through this somehow. 

I’m maybe getting 5-10 hours a week consistently, I’ve been sleep deprived for years and don’t know how I’m going to get through this, trapped in body and it feels hopeless

I can’t stop crying. I am devastated. Slow taper is bullshit. Switch to Valium is bullshit. Look at this mess. Look at u WP! We do everything the way we’re spose to and suffer anyway.

 

I’m honestly ready to quit here because if I see one more post about someone who used Benzos for 20+ years sleeping better than me I’m gunna lose it.

 

Sorry if u are one of those people but it just doesn’t seem fair

I’m with you Shayna, I’ve started to legit consider flushing all the meds, going cold turkey and just take it, can’t sleep any worse than I currently am, im very mellow but it’s starting to really weigh on me, i honestly don’t know how I’m alive right now.

Hi Shayna, I totally relate to what you are going through, and honestly, I don't know exactly how I persevered (I think it was the cognitive impairment that kept me going, sadly, utter stupidity) but I didn't sleep a wink naturally for over 2 years. I literally thought I would go insane. I probably did. I didn't think I would survive. I often felt like I was having a stroke (not that I know what it feels like), but I wasn't. I ended up rotating Benadryl and melatonin and then finally, indica edibles (the strong medical marijuana kind by Baked Bros). It gave me worse cognitive impairment in the morning but I needed sleep, I wasn't working, so I said screw it because I needed some sleep. I still only slept off and on a few hours, but it got me through.

 

At the three year mark, I started sleep-training myself to sleep without anything, and I was able to cobble together a couple of hours and now I sleep about 4 to 5 hours, albeit I wake up during it. Some nights I sleep better, and some nights are still tricky. I never feel rested.

My heart rate is still on the low side, but it is consistent with how it was before withdrawal. My eyes are still dark, my face is all squishy from the head pain of lack of sleep and I think it repels people, but I am hanging in there.

I don't know about your hormone situation, or other health issues, but it is important that you get those checked to rule anything else out. But other than that, this benzo-withdrawal GABA disruption really destroys our sleep cycles for awhile and it can take some time to for them to improve, but other folks on BB have been quite positive about sleep returning. Eventually, at least.

 

I’m with you Shayna, I’ve started to legit consider flushing all the meds, going cold turkey and just take it, can’t sleep any worse than I currently am, im very mellow but it’s starting to really weigh on me, i honestly don’t know how I’m alive right now.

 

Honey,let me just say if I could do it all again, apart from not taking them in the forst place, I would CT.

Hi Shayna, I totally relate to what you are going through, and honestly, I don't know exactly how I persevered (I think it was the cognitive impairment that kept me going, sadly, utter stupidity) but I didn't sleep a wink naturally for over 2 years. I literally thought I would go insane. I probably did. I didn't think I would survive. I often felt like I was having a stroke (not that I know what it feels like), but I wasn't. I ended up rotating Benadryl and melatonin and then finally, indica edibles (the strong medical marijuana kind by Baked Bros). It gave me worse cognitive impairment in the morning but I needed sleep, I wasn't working, so I said screw it because I needed some sleep. I still only slept off and on a few hours, but it got me through.

 

At the three year mark, I started sleep-training myself to sleep without anything, and I was able to cobble together a couple of hours and now I sleep about 4 to 5 hours, albeit I wake up during it. Some nights I sleep better, and some nights are still tricky. I never feel rested.

My heart rate is still on the low side, but it is consistent with how it was before withdrawal. My eyes are still dark, my face is all squishy from the head pain of lack of sleep and I think it repels people, but I am hanging in there.

I don't know about your hormone situation, or other health issues, but it is important that you get those checked to rule anything else out. But other than that, this benzo-withdrawal GABA disruption really destroys our sleep cycles for awhile and it can take some time to for them to improve, but other folks on BB have been quite positive about sleep returning. Eventually, at least.

 

Thanks tater. I’m going to need to just take something every few days. I get too upset when I try to go it alone. My sleep is worse post jump than ever before. I distract and keep busy and do all the things I’m spose to do. I just feel like I’d it even worth fighting anymore. It sure doesn’t feel like anything is going to change. All my other symptoms have gone sure but if I can’t sleep I’m never going to get better

I’m with you Shayna, I’ve started to legit consider flushing all the meds, going cold turkey and just take it, can’t sleep any worse than I currently am, im very mellow but it’s starting to really weigh on me, i honestly don’t know how I’m alive right now.

 

Honey,let me just say if I could do it all again, apart from not taking them in the forst place, I would CT.

 

Still months ahead of me and sometimes I've got the same feeling. The only thing I can say against C/T is that it gave me tinnitus. It happened to me when I stopped lormetazepam abruptly.

 

Have you ever tried Seroquel in the 50-150mg range Shayna? Just to break a streach of zero hours.

Yeah I tried it once and spent the entire night vomiting. I’d never take it again.

 

I was on zyprexa and never wanted to go on that. The drs wore me down promising it would help. It never did. I’d rather die than go on aps again. No offense

I’m maybe getting 5-10 hours a week consistently, I’ve been sleep deprived for years and don’t know how I’m going to get through this, trapped in body and it feels hopeless

 

I get about 14 hrs and that’s using unisom.

Shayna, I have borderline hypothyroidism too, Hashimoto's, and symptoms of hypothyroidism are sleep problems including insomnia.  If you treat that maybe you'll be able to sleep again.  Any TSH above a 2 can cause symptoms including insomnia.  I felt horrible for years with my untreated hypothyroidism.  What was your TSH?  I take dessicated pig thyroid as a replacement.  Synthroid made me feel wired and sick.  Learn about hypothyroidism and the symptoms and get on some replacement therapy if your TSH was above a 2. 

My thyroid hormones were normal the dr said, it was the antibodies that were low. X I just feel like I’m beating a dead horse going to drs. She was like I know u feel tired. Wtf?! I literally said I can’t sleep not that I’m tired. I’m so sick of not being listened to by drs. They can all suck a fat one. Over it. They’re all quacks.

 

At the start of all this I had classic hyperthyroid symptoms and now I have hypothyroid symptoms.

 

But u know, my blood tests look fine so I’m just imagining it apparently

I use melatonin 5 mg per night. Works great for me. It has it’s own side effects but it is worth it for the sleep. I have even taken 10 mg some nights but I have only done that 3 times and try to avoid that even though it is within the over the counter limits as they sell 10 mg pills.

Hey jack x melatonin unfortunately doesn’t do much for me. Maybe I’m not taking enuf I don’t know. I take 3mg now and then, but I took it for ages snd I do t think it did much.

 

Truth, if someone was considering going on remeron, what would u tell them?

Oh Shayna!!

I’m so sorry!!

It’s so unfair, all this suffering

I agree, I wish I never moved over to Valium, I still may move some back to Ativan

 

I’m not sure about Remeron, I would hate to see you have the histamine issues that I have

 

I take around 50-62.5 of Trazodone and that works to me. It did take several days to a few weeks to work, but it is working wonders for me.

Still a med, but I hope to get off it after my taper

 

It does have some side effects, stuffy nose, little groggy in the morning, but I sleep on it.

 

Remeron does work for a lot of people, I just know it can give HI, I have that from the antibiotics!

 

How did the Dr test your antibodies, was it an endocrinologist? I’ve been begging my dr to send me to one, even after the POTS diagnosis, it’s like pulling teeth for people to believe me and I’m too sick to give them all the latest research. I keep getting, this isn t benzo withdrawal???!!!

 

Oh for melatonin to work, take at least 2 hrs before your bedtime. Start with only 1.5 and then 2.5 mg, shouldn’t need more than that.

 

Don’t freak out about your HR, mine dips into the low 40s overnight, drs don’t seem worried.

 

Hugs my friend,

We will prevail!

 

Winnie

TSH values between .5 and 5.0 are considered normal, but many people with a TSH above a 2 feel like crap.  Find out what your TSH was and if it's above a 2 you could be having hypothyroid symptoms which include insomnia.  I had a TSH of a 4 one time and I felt horrible.  Weak and with sleep problems.  I've been hypothyroid for decades. 

Winnie I’ve been wondering about HI. I’m thinking about trying the low histamine diet again. I need to do something. It’s getting ridiculous.

 

No gp just did bloods. I’m thinking of going to an endocrinologist too. X

 

I’ve tried melatonin at different doses snd different times, feels like it does nothing at all.

TSH values between .5 and 5.0 are considered normal, but many people with a TSH above a 2 feel like crap.  Find out what your TSH was and if it's above a 2 you could be having hypothyroid symptoms which include insomnia.  I had a TSH of a 4 one time and I felt horrible.  Weak and with sleep problems.  I've been hypothyroid for decades.

 

Yeah I’ll ask for a copy of my bloods on Monday. I still like to see what it says for myself x

hypothyroidism can cause heart problems too including slowed heart rate, bradycardia, which you mentioned.  Here's a link to learn about it:

 

https://www.mayoclinic.org/diseases-conditions/hypothyroidism/symptoms-causes/syc-20350284

 

I have a two-years degree as a Med Lab Tech and worked in the medical field for years.  Not an expert but know a bit about medical problems and certainly hypothyroidism.

 

High iron can cause heart problems and some with hypothyroidism have high iron. 

 

https://stopthethyroidmadness.com/

 

I wonder if you get the iron down and see about your "borderline" hypothyroidism being treated that it might help fix your insomnia.  I had terrible sleep problems with my borderline hypothyroidism.

Yeah but how do u get diagnosed if ur within range? Drs just won’t even look at it

 

Plus even tho my iron was high she said my stores are low so I should start taking iron?

Shayna,

 

When doctors took me CT of clonazepam in October 2020, I got severe tinnitus.

 

You did a good thing to go slowly.

 

Three weeks ago I got so desperate that I took clonazepam again and now I'm stuck. It did give me help for about a week of slightly better sleep and lower tinnitus but now I'm back to where I was before - sleeping 3 hours a night and having awful tinnitus.

 

Im thinking on you and know you will get better. When you can't sleep,  think of how awful it would be to have hissing and beeping and sirenas in your ears.

 

You did a good thing and now can at least lay in silence or listen to calming music.

 

I followed your posts because I suffer from severe insomnia for mor then a year now and feel like my health is going down too. But you are so brave and your health is better. Of course you feel awful bc of the sleep deprivation but you still have your health.

 

Don't give up and keep going and during your long nights know that I'm here with you.

 

And really please think of the the fact that you spared yourself of tinnitus as a consolation. I really think it's a torturous disease and there is absolutely no cure to it. I can't describe how awful it is.q

 

You will be better.

 

Im thinking on you a lot.

 

 

Yeah I tried it once and spent the entire night vomiting. I’d never take it again.

 

I was on zyprexa and never wanted to go on that. The drs wore me down promising it would help. It never did. I’d rather die than go on aps again. No offense

 

What is aps?

Compare your last blood works with your past blood works if you have it. As becksblue said you may be within the range but feeling like a crap also when hormones make significant shift within the range from your baseline.

Lovely,

 

I’m

So so sorry you are going through this. It’s bl__dy unfair you are dealing with this. At all. Such a lovely, kind, fun, awesome, intelligent, vivacious, creative & dowm right extraordinary human like you should not even have to have your little toe on this horrendous path.

 

You have faught such a long, hard & arduous battle. Please don’t give up. Keep waving your long sharp sword at those sleepless nights. Don’t put down that sword - not now - not ever. One day - that sword will bring sleep back - I don’t know when exactly - but I just know, right down to my very bones, that that sword will bring back sleep. So keep sharpening that sword.  Keep on being kind to yourself.

 

I’m thinking sometimes I venture into the field of being toxicly positive. But with you lovely - I just know that you will sleep again, that you will lead a full life full of sleep when you close your eyes. So every night - sharpen that sword.  Please don’t fund up. It is harder than hard what you are going through & I wish I could send you some of my sleep. But for now all I have is words that hopefully bring you encouragement. So for now if you have to take stuff to get some relief & sleep that’s ok. Please don’t be hard on yourself. 

 

We will never know if a taper or CT would’ve better suited any of us.  I think that as we trudge through this barbaric field we look to the other side of the fence & it’s natural to wonder if we could’ve done something that would’ve made this s-it sandwich a bit easier to clamp down on. But we will never know & no Dr or specialist will ever be able to tell us. Please be kind to your lovely self.  You are worth it. 

 

You can slay me one with your fierce sword for saying this next bit - it any of it.  I acknowledge how down right disgustingly vile this insomnia is for you.  Please don’t take this next bit as downplaying what you are going through because I think you are one of the most strongest people I will ever have the privilege of knowing.  All of your other symptoms have gone - apart from the insomnia.  The insomnia will go to.  I promise..  it will. It will. Just hold on. Me & the mountain of other oeople who think - who actually know that you are just the bee’s knees - are here for you. Cheering you on.  Just don’t give up.  Don’t you dare give up.  Because you can do this.