Rachel Posted November 2, 2011 Report Share Posted November 2, 2011 I have been having greater difficulty with sleep in the past couple of weeks. I have a lot of sleep starts in the beginning of the night. Usually there will be one big one at first, and then lots of little ones after that. Sometimes the little ones are so little that I'm not even sure if they are sleep starts or not. For example, I will wake up because one of my fingers is moving, and the movement against my skin wakes me up. Since it happens right after I fall asleep, I'm not sure if it is totally involuntary or not. When it is worse it is more than just one finger that moves; it is my whole hand, and sometimes even my arm. Maybe this would fall under the category of Periodic Limb Movement Disorder.When a finger moves and wakes me up, I make a fist to try to keep my fingers still when I fall asleep again. If the movements aren't too bad, then this will work. Sometimes I have to put my fists underneath the weight of my body to keep them from moving in my sleep. When the movements are at their worst, even lying on my arms and fists doesn't work. They move anyway after I fall asleep, and it wakes me up.I haven't had any changes in diet or medicines, so I don't know why my sleep has changed and why my body is moving so much in my sleep. This is a problem I have had for a few years, but it has never occurred nightly for 2 weeks.A few nights ago I was really in need of a good nights sleep, so I changed up my night time meds a bit. Instead of taking 30mg of amitriptyline and 3mg of Melatonin, I took 1/2 of a doxylamine succinate (Unisom) instead. My hope was that it would relax my body enough so that I could sleep, and it did seem to help I have continued with this for 3 nights now, and I have been sleeping better. I don't prefer this for the long term, though. I would like to go back on the amitriptyline for migraine prevention, but it is best to not mix it with the doxylamine succinate.Does anyone else have a problem with sleep starts and other involuntary muscle movements in your sleep, and is there anything that has helped you with this? Quote Link to comment Share on other sites More sharing options...
lgtaylor100 Posted November 2, 2011 Report Share Posted November 2, 2011 Mirapex is often prescribed for restless leg syndrome. What you are describing is not exactly restless leg syndrome but you might want to ask your doctor about it.Lynne Quote Link to comment Share on other sites More sharing options...
brethor9 Posted November 2, 2011 Report Share Posted November 2, 2011 yes I have huge issues with this every night....only mine are almost full body jerks...its very unsettling...they happen many times through the night always waking me up....I hate them because my heart also feels weird when they happen almost like it stopped beating for a second or two and the jerk is to get my body started again. Wish I could figure out what causes it......Bren Quote Link to comment Share on other sites More sharing options...
Serbo Posted November 2, 2011 Report Share Posted November 2, 2011 yes I have huge issues with this every night....only mine are almost full body jerks...its very unsettling...they happen many times through the night always waking me up....I hate them because my heart also feels weird when they happen almost like it stopped beating for a second or two and the jerk is to get my body started again. Wish I could figure out what causes it......BrenI get these to, same feeling, wondering if my heart has stopped.I know most likely of course it hasn't. My Doctor says that these "jerks" if they can be called that, are caused by changes in BP. Low BP.I notice if try and go to bed less stimulated e.g all lights off, no TV etc it helps Quote Link to comment Share on other sites More sharing options...
Sallysblooms Posted November 2, 2011 Report Share Posted November 2, 2011 Do you take a good magnesium supplement at night?Also Epsom Salts in your bath is good. Relaxes the muscles amount other things. Safe. Quote Link to comment Share on other sites More sharing options...
Rachel Posted November 5, 2011 Author Report Share Posted November 5, 2011 Thanks, everyone, for sharing your thoughts.Sallysblooms, yes I take a good magnesium supplement daily. I can't take baths because of severe blood pooling in my legs if they are submerged in warm water. And I can't take a bath in cool water because I wouldn't be able to stay warm.I have gone back to my usual night time meds of amitriptyline and melatonin. The doxylamine succinate is great for a couple of nights, but after that it leaves me too groggy in the morning. A couple of nights ago I was having problems with involuntary muscle movements while I was still awake. It's annoying, but not nearly so bad as the muscle movements that wake me up from sleep.I have an appointment with my doctor in two weeks, so I'll be asking her if there is anything she recommends. Quote Link to comment Share on other sites More sharing options...
s-pot Posted November 5, 2011 Report Share Posted November 5, 2011 I have experienced this in varying degrees over the past two months. Worst being progression to a 'seizure like' episode. I have no answers but after some investigating I figured these jerking movements etc were more to do wit v low BP whilst lying down.The worst episodes (as mentioned) occurred when I did not have my bed tilted at bottom two nights in succession (I always tilt my bed or i feel like ive run a marathon when i wake up in the AM and am far more symptomatic!!). I experienced a few arrythmias in close succession, turned over on my back and the seizure started. Im figuring its some sort of cerebral reaction to hypoxia in the brain when BP runs too low??However Im interested in your comment re Magnesium Sallysblooms....i see alot of people recommending it. My symtpoms are getting progressively worse recently and am now experiencing alot of Joint pain and Migraines...Could a magnesium supplement help reduce these symtoms also? Quote Link to comment Share on other sites More sharing options...
Serbo Posted November 5, 2011 Report Share Posted November 5, 2011 being a new POTS patient, when we talk about tilting the bed (as my dr recommended), is that putting blocks at the feet end of the bed, so more blood gets to brain? What kind of degree should you tilt to.thanks Quote Link to comment Share on other sites More sharing options...
corina Posted November 5, 2011 Report Share Posted November 5, 2011 hi serbo, when you check out the "what helps" section at the main site you will find the following:Elevating the head of the bed 4-12 inches has helped some POTS patients become less symptomatic. It has been reported that elevating the head of the bed generates mechanisms that expand plasma volume (Low, 2000).hope this helps!rachel, i hope you'll find something to help you stay asleep during the night!corina Quote Link to comment Share on other sites More sharing options...
Serbo Posted November 5, 2011 Report Share Posted November 5, 2011 thanks corina, i was confused about which end of the bed to elevate, as when we talk about the head of the bed i presume we are referring to the end where your feet are? Quote Link to comment Share on other sites More sharing options...
Rachel Posted November 10, 2011 Author Report Share Posted November 10, 2011 As the involuntary muscle movements got worse my muscles also became weaker. I had to spend a lot of extra time in bed because my muscles had become so weak.I think I might have discovered the problem with my muscles. There were actually two small med changes that I didn't think about. I had forgotten that I stopped Cerefolin NAC about a month ago. I had been doing better with brain fog on the mito cocktail, so I was hoping that I wouldn't need the Cerefolin NAC anymore. I did have more cognitive difficulties after stopping the Cerefolin NAC, but I pushed through it. I thought that the med only helped with brain fog for me, but now I'm wondering if the folate and amino acids in there also helped my muscles. Perhaps it was helping to treat mito and I didn't even know it.The other possibility is the alpha-lipoic acid that I was taking. I have been taking it for a while now, but 3 weeks ago I started a new bottle. It is the same brand as before, but it is the timed release type. I didn't even realize this until a few days ago.I have now stopped the alpha-lipoic acid and I have added Cerefolin NAC back into my daily meds. The muscle weakness is improving and getting back to what is normal for me. I am still having involuntary muscle movements, but they are lessening. I'm not sure if it was the timed release supplement, the lack of Cerefolin NAC, or both that caused the problem. But I'm feeling a little better, and I'm thankful for that. Once I'm back to normal I'll try the timed release alpha-lipoic acid again to see if that is what was causing the muscle twitches and weakness. I'd like to know for sure what the cause was.S-Pot, I take magnesium to help prevent migraines. It has also decreased my muscle aches and pains. You might benefit from a magnesium supplement also.Serbo, by the head of the bed we mean the portion where you shoulders, pillow, and head are. Having your head and shoulders elevated during the night has helped some patients because it can cause the body to increase its blood volume. Some patients have found this helpful, but I have also heard from many on the forum that it was not helpful. I don't want to discourage you from trying it. It could really help you, but don't get your hopes up too high because it doesn't always work. Quote Link to comment Share on other sites More sharing options...
potsgirl Posted November 11, 2011 Report Share Posted November 11, 2011 Rachel,Sorry you're having these sleeping issues, and hope you can find something that works for you when you see your doctor. I can relate - I wake up frequently during the night and early in the morning due to the pain in my feet and hands from small fiber neuropathy. I had to lower my dose of Gabapentin (Neurontin) a couple of weeks ago because they were giving me seizures. More pain = less seizures. I'm not sure which I'd rather have. Ok, neither one! Quote Link to comment Share on other sites More sharing options...
jnew Posted November 11, 2011 Report Share Posted November 11, 2011 I'm new here and newly diagnosed. I have a lot of muscle twitching/jerking and fingers and toes moving. I cannot take any magnesium as it lowers BP. My BP runs extremely low even w/lots of salt and fluids. I try 5HTP and organic lithium. Melatonin seems to help if I stay at a low dose, but it does seem to lower my BP and increase my pulse. I awoke last night witha pulse of 110 pounding. It usually lasts for a couple of hours, bit this episode is hanging on. Ugh. I'm so tired and can never sleep during the day. Be careful w/benzos everyone. You can develop tolerance and you won't know what is from POTS and what is from the benzo. Just speaking from experience. Quote Link to comment Share on other sites More sharing options...
Rachel Posted November 12, 2011 Author Report Share Posted November 12, 2011 I'm so sorry, Jana! That's rough. Is there anything else that might help with your pain but not give you seizures?Hello Jnew, and welcome! It wasn't clear from your post - have you taken magnesium and had it lower your blood pressure? I haven't had that symptom from magnesium. It doesn't lower everyone's bp, so you might find that it works okay for you. My muscle twitches are continuing to lessen, and I'm so glad. It is so weird to be lying in bed, trying to go to sleep, and having my arms and feet move when I'm not telling them to! Quote Link to comment Share on other sites More sharing options...
jnew Posted November 13, 2011 Report Share Posted November 13, 2011 Hi,Yes, unfortunately, magnesium lowers my BP.Julie Quote Link to comment Share on other sites More sharing options...
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