I am reaching out this morning because I am feeling pretty desperate with regards to my nights and was wondering if anyone could identify with the following.
I keep a very regular sleep schedule which is not so hard to do when you have no life:
I shut the TV at 10 pm. I turn over to go to sleep and the rocking begins. I try not to panic and can eventually fall asleep. That is the easy part of the night… By 4 am I am awoken by a horrid dizziness, not rocking, not vertigo, just the most uncomfortable level of dizziness in my head. It does not allow me to go back to sleep and I just lay there another hour if I can until I can’t stand it anymore before calling for someone in my house to help. If feels like my head is “reverberating” if anyone can relate.
I was just wondering if anyone else has their sleep cut short like this. As I said in a previous post, I am starting at 240 mg of verapmil today. (I also take clonazepam) My doc wants me to give this about 4-6 weeks before we add on. It is so hard to face each day in which I have terrible dysequilibrium, dizziness, and rocking in and of itself when I have no peace at night.
Lisa, I can relate to the interrupted sleep, although for me it is not every night. I usually go to bed about 10:00, read for awhile, I sleep on 2-3 pillows, shut the light out and can usually go to sleep. But hours later I wake up afraid to turnover knowing that when I pick up my head I will feel the disequellibrium. I try to lay there and not move. After I get up enough “nerve” I get myself up (trying not to disturb my husband), go downstairs and try to sleep sitting in a recliner. Sometimes it works, sometimes is doesn’t. I never usually have one or two nights is a row with this, then I am so exhausted I just end up sleeping through the night.
Sorry to hear you are feeling so rotten. Hope things get better.
Joan
Thank you Joan. I am sorry you also have to battle this during the night as well. I wish you good sleep. It is just so demoralizing to start the day feeling so horrible, hours before one would normally be up.
Hi Lisa, I too suffer from the middle of the night dizziness. It has been progressively worse for me during my Lexapro trial. I never sleep through the night. I am up at least once or twice and always have a tough time falling back asleep. The dizziness is always there when I wake up at night and turn over or move. I have tried a variety of pillow strategies to no avail yet. Before the Lexapro, the middle of the night dizziness wasn’t as constant. It has been 3 weeks on Lexapro and so far nothing but increased dizziness day and night. I want to stick it out for another 2 weeks but it has been very tough. Difficulty sleeping is terrible for this condition. Good luck and I am hoping verapamil brings some relief. Ben
I am reaching out this morning because I am feeling pretty desperate with regards to my nights and was wondering if anyone could identify with the following.
I keep a very regular sleep schedule which is not so hard to do when you have no life:
I shut the TV at 10 pm. I turn over to go to sleep and the rocking begins. I try not to panic and can eventually fall asleep. That is the easy part of the night… By 4 am I am awoken by a horrid dizziness, not rocking, not vertigo, just the most uncomfortable level of dizziness in my head. It does not allow me to go back to sleep and I just lay there another hour if I can until I can’t stand it anymore before calling for someone in my house to help. If feels like my head is “reverberating” if anyone can relate.
I was just wondering if anyone else has their sleep cut short like this. As I said in a previous post, I am starting at 240 mg of verapmil today. (I also take clonazepam) My doc wants me to give this about 4-6 weeks before we add on. It is so hard to face each day in which I have terrible dysequilibrium, dizziness, and rocking in and of itself when I have no peace at night.
Thanks so much for listening.
Best,
Lisa
— End quote
I am curious are you pretty much bedridden during the day or are you able to be up at all.
When this first started with me in 2008 and I was pretty much in the bed all day my sleep was very much interupted at night and I think part of it was because I was very inactive during the day …not that I am real active now but I am up now and before I was not.
Have you noticed any difference on the medication? If not do you think you should have noticed some improvement at this point. You take clonazapem do you think another benzo might help more?
I think the Valium really helps me sleep although I take a very small dose…
I know people that have had improvement in their sleep using melatonin do not know what your feelings would be to trying that as a sleep aid.
I am so sorry to hear about your nights. I know that sleep is vital as at least it gives us a break from the torture of the day. I have some nighttime dizziness always (some nights worse than others), but not as severe as you. I do wake up in the middle of the night, but I’ve always done that. Today it took me a very long time to fall back to sleep when I awoke at 3:30AM, but I think that was more due to anxiety and sadness. I always have to use the restroom when i wake up during the night, and that is truly an awful and probably dangerous experience. That short walk is horrible!!
I wish you much better nights ahead. i am praying —well I don’t pray - that’s a lie :)----but thinking about you and hoping for the very best with this increase in the med.
btw - this probably means nothing, but before I was ill, I went to a tanning salon a few times in my life. Those couple of times, when lying int he bed, I felt like I was on a spinning rollercoaster, especially when I closed my eyes. The whole tanning bed seemed to spin in circles the whole tanning session. Sometimes I now feel that way when lying in bed. Is that similar to how you feel? I wonder if my experience those days were indicative of things to come. who knows?
Thanks everyone for your responses and support. Yes, Lisa, your description is very similar to what happens to me when I close my eyes. Timeless, I am out of bed for as much of the day as possible. I do get some exercise daily on the elliptical trainer and try to sit for as long as the dogbone pillow will keep my head up. Valium does nothing for me. I tried it awhile back and it just made me feel weird. I need a med that will stop the dizziness and the benzos don’t do that for me. I am only taking the clonazepam at this point because I have been on it long before I received my MAV diagnosis (given to me as a vestibular suppressant when the dizziness began 2 years ago) and at this point since I am on the verapamil trial it would not be useful to change anything else (meaning withdraw clonazepam). If I ever get stabilized on meds for the MAV, I will try to get off the clonazepam.
Ben, I am so sorry to hear the lexapro has ramped up your night symptoms. I hope that calms down for you. Any improvement otherwise with the lexapro?
I start my 240 mg dose of verapamil today and I am praying (I don’t pray either Lisa…lol), so I am HOPING as hard as possible that change is in my future. I just wish the nights would give me some peace. It destroys my spirit as you all might imagine.
Thanks for listening to me as always. You guys are the best.
Lisa - I just wanted to note that it’s very wise not to stop the klonopin now. I only took it for approx 6 weeks or so last year at a low dose (didn’t help my dizziness at all), and had increased dizziness when withdrawing from it. Definitely don’t want to make things even worse.
I’ve been getting that a lot lately. I get these random, almost panic attacks in the middle of the night. I don’t really know what causes it, since I’m not on meds right now. Maybe I turn my head funny and get dizzy. Sometimes I can quickly fall back asleep, but other times I have to get up for a while and try to calm myself down. I do seem to wake up more often when I have been very inactive during the day (and I also have a much harder time falling asleep on those days too). As if we aren’t miserable enough during the day, we’ve got to be miserable in our sleep too.
For the last 6 years I have suffered bad insomnia. The night before last I literally went through the whole night without one second of sleep. Completely awake, didnt even doze. I felt quite disorientated the next day but no headache, odd, considering I have a headache in some form or another every day.
Most nights, I sleep, propped up with 3 pillows on my back. I dont attempt to sleep on my side or turn over at all, I scrunch the top feather pillow around my neck and stay propped up, that way I know I wont have any trouble with vertigo, which I used to get frequently when I laid on my side and turned onto my back. I dont lay down any more. Having had this MAV for over 20 years have got used to it. My dentist treats me with me sitting up. If I go for appointments in the hospital I ask for the end of the bed to be raised.
I wake every night at least once, sometimes every two hours. The time I feel bad and jittery is if I dont go to sleep soon after going to bed, I then seem to get rushes of adrenaline all through the night.
I tried the clonazepan and it made me very disorientated and dizzy the whole of the next day.
I can cope with most of this rubbish during the day, but if I cant sleep at night, the depression hits, its like a double whammy to get no escape, not even at night. Just remember when you are feeling low with this happening to you at night, you are not alone, there are many more of us out here who are not asleep either
Lisa,
My heart breaks as I read your post because I am well versed in the torture of the nights. Verapamil was not my med so I can’t advise you there accept to say that I got the feeling in my spinal cord and head that you are describing at only 40 mgs. It has been a month since I got off of it and my balance still is not back to baseline. Withdrawing from even small amounts of Klonopin is a slow go at best. (I don’t care what Hain, Rausch, and others have to say about that, many here seem to know more.)
There are no magic words but many are thinking of you and wishing you well. I do pray and will include you in my prayers.
I was just reading your post with regards to trouble sleeping. I am thinking that the TV might be a trigger for you. Maybe tonight try to turn the TV off maybe 1 hour before bed. The TV is a trigger for me (I still watch in anyway…so is the computer screen…but you know, some things I am just unwilling to delete from my life due to this!!!) I am not thinking it will be an end all cure all, but maybe eliminating one trigger, especially right before bed, may help! Also, keep in mind that everything will be a bit worse due to the changing of your med…OK?
Thanks again everyone for your kind words, suggestions and sharing your stories of nighttime “terrors” with me. I feel so badly for each of us that not only suffer during the day, but when we are supposed to get relief and reset our bodies, we find nothing but a stressful situation.
I took it easier today and will be taking my larger dose of verapamil tonight for the first night. I feel so comforted knowing how everyone jumped right in and offered me support. It was so helpful and greatly appreciated and helped take away the isolating loneliness this illness can make us feel. Thanks again for all your understanding.
