Common Variable Immunodeficiency Support Group

Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.

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Insomnia Study Results

Some of you may remember that I was going to do an insomnia study because I don't sleep hardly at all. It's like I get really tired but not sleepy. Well....I had it done and went in yesterday for the results. The doctor's name is Dr. Reite and he has been doing sleep /insomnia studies for years!!! I wore and actograph (I think that's what it's called) on my wrist for 10 days and it measures circadian rhythms (sleep/wake cycles) as well as other things I don't understand! lol So...the findings are as follows: He said he has NEVER seen an actograph reading like mine. He told me that some people say they don't sleep and then when they do the test they find that they are, in actuality, sleeping for about 6 hours a night. he said I, on the other hand, really do NOT sleep! He said he has never seen a case like mine nor has he had a patient with CVID before. I told him I think it's related to the CVID and he agrees it might. He wants to do some research and see if there is a correlation between the two. I told him about the forum and that others with CVID have imnsomnia, too , and he is interested in speaking with the group to see how many of us are having the same problem. He said he hasn't even seen a case like mine in medical literature! I only sleep from 15-20 minutes to 190 something minutes in any given 24 hour peiod. Never over 3 hours. Yet I function every day and have energy and can think clearly with hardly any sleep. He finds this fascinating! I told him it would be a good research subject and he agrees. I wish we could get funding through the University of Colorado Health Sciences Center to do actual research. It would bring CVID to the forefront and God knows we need that to happen! Also we could possibly find a solution for those of us who don't sleep well. He is going to come on the forum and ask you all about your sleep(or lack of) habits to try to determine if CVID plays a role in insomnia of this degree. I have tried Ambien, Lunesta, Trazadone anad more and all I do is lie awake and get RLS(Restless Leg Syndrome). I am so excited to see what he finds out and I would really appreciate it if everyone would cooperate with him and give him the information he needs for this research. If anyone has any information on insomnia and CVID would you PLEASE send it to me at vivian.childers@comcast.net? I am trying to find out all I can also so I can forward any information possible to Dr. Reite. He is affiliated with the University of Colorado Health Sciences Center which was just rated the #1 hospital in the nation! Thanks in advance for all your help! I can't wait to see what he finds out! I will keep you posted!

Replies

kelli1b
kelli1b

I do not have insomnia technically but have to have a sleep aid every night BUT that being said they work for me. MY reason for writing is I find this VERY interesting because most people think there is a correlation between CVID and Chronic Fatigue Syndrome, in fact, fatigue, debilitating fatigue, is usually a major concern for people. Please keep us posted.
deleted_user
deleted_user

Vivian, you sound exactly like me. I do not feel sleepy during the day either even when in fact I only sleep 2-3 hours a night. Wow. Thanks for sharing. Im going to look a little more into this.
TinaMcG
TinaMcG

This IS fascinating. Were the changes in sleep patterns gradual or sudden?
deleted_user
deleted_user

Hi Vivian,

Thank you for your post. I have wondered if there was some correlation between sleep cycles and PID. My inability to sleep started at the same time my syptoms appeared approximately 9 years ago. I have to take something at night to sleep or I will still be up when the alarm clock goes off. I have often thought it was strange to be able to function somewhat normally after not sleeping for 2 days. I am often extremely tired but do not feel sleepy. It's like a switch has been flipped on and I cannot fall to sleep.
deleted_user
deleted_user

So I actually have been diagnosed with narcolepsy...so I sleep too much...and I have CVID so I don't know, but very interesting. Look forward to hearing more...
deleted_user
deleted_user

OK...so I went back to Dr Reite and he said he has never seen anyone with my type of sleep pattern. I wore an actograph (I think that's what it's called) for ten days that measures cicagdian rhythn=ms (sleep wake cycles) and more I think. Anyway...he said most people who think they don't sleep in actuality are sleeping about 6 hrs a night BUT he said I REALLY dion't sleep. Over 9 days I had about 15 or so sleeping hours. I only get 45 minutes up to 2 1/2 hrs a night. Sometimes less than that! He said he hasn't even seen anyone like me in the medical journals. I told him I think it's CVID related and he said I may be right. I gave him the address of this forum and he said he may come in top ask questions of everyone so he can do some research. I have been out of town so I don't know if he has done that yet or not. I think it would be awesome if the University of Colorado Health Sciences Center would fund research on this subject. Hwe is looking into some options to try to get me to sleep but it's pretty intense....he is checking with my PCP to see if he will even agree. I will let you know after I find out. I don't want to post a possible treatment that has never been tried before unless they are actually going to do it. He said I would be a guinea pig (my term not his! LOL) basically because he has never had a patient before with CVID or my sleep pattern. He used the term "experimental." It is fascinating but I sure wish I could sleep! LOL I told him that there were others in here with the same problem and he is VERY interested in your story about your sleep pattern. If you want to send me an e-mail I can forward it to him so you can be included in his research. I will keep you all posted as to what is happening. :-)
deleted_user
deleted_user

my e-mail is vivian.childers@comcast.net
deleted_user
deleted_user

I also cannot sleep without a sleep aid. . I started on a low dose sleep aid, but now have had to talk to my dr and have had it increased. It concerns me, as without them I would not sleep, and I question why my sleep patterns have changed.
deleted_user
deleted_user

YourDr needs another guinnnnie pig---I fit the bill and the criteria. . Our symptoms that you have descricbed are very similar VERY similar!! I am longing to close my eyes and sleep like I used to , but I believe that will not happen again. My question again WhY Why the change in sleep pattern. I have also noti ced some other similarities with the sleep pattern changes. . which I would be most interestedin sharing with him.
This disease is debilitating, and needs to be understood throughout the medical industry.
I will not share more on here, on public forums, as ai am new here, but am willing to speek with your sr, and if he has started research would be more that hapy to do that. I am from Canada,

Thanks for now, pleasee post if youu would like for me to cotact you at your email address
PrincessButtercup
PrincessButtercup

I too have a lot of trouble sleeping and if I get 6 hours of sleep or less I'm much more likely to get sick. In fact, I will start feeling achy all over, get a sore throat and headache and feel like I'm coming down with the flu simply from not getting enough sleep. I'm also a very light sleeper, a person stepping on a loose floorboard or having a joint pop when they walk into my room will usually wake me up. I often lie in bed for hours trying to sleep and then will get 2-4 hours of sleep. After a few nights of that I'll sleep better but still feel sick from it.

I use an app on my phone called "SleepBot" that helps me track my sleep cycles. I push an icon as I'm getting ready to sleep and then again when I wake up. It tracks the times I fall asleep and wake up as well as the hours I sleep. It also allows me to set the number of hours I want to sleep and based on that number it will tell me whether I'm sleep deprived. I have an Android based phone, but I assume they would have the app for iPhones too.
deleted_user
deleted_user

Anyone is more than welcome to contact me and send me their info and I can forward it on to Dr Reite. I don't remember the last time I slept well or how it even began so i don't even know how fast or slow the onset was but I don't think I ever sleppt real well. Sleep aids don't do anything for me! I have tried Ambien, Lunesta, Trazadone, Amytriptiline (spelled wrong I know! LOL) and Xanax and all that jazz....no help whatsoever! I will be talkimng to him this next week about the treatment he and my PCP have agreed on and then I will let oyu know. It's VERY radical though and I'm not totally convinced yet to try it. LOL Sorry I can't explain mmore now but I just want to be sure if it's the treatment they have chosen before I post it. Where do you live missionkd?
I live in Denver, CO. Dr Reite is at University of Colorado Health Sciences Center. Sleep Clinic department. I'm sure if oyu wanted to contact him he would be very interested in your stories, too. I will try to get you his contact info asap. Thanks for all the input. I really appreciate it.
deleted_user
deleted_user

I just talked to Dr Martin Reite..He is the sleep specialist that did my insomnioa study. He said he would really like to hear from all of you who have sleep disturbances and would like for you to share the information with him as to your exact problem with sleep. You can contact him directly at :
martin.reite@ucdenver.edu

He would like to look into the correlation between CVID and sleep .... or lack of. At this time i have ok'd the go ahead to try the experimental treatment for my insomnia. We will be trying, (if we get the go ahead from all the higher ups....insurance company and the company that makes the drug), a drug called Xyrem...sodium oxidate. It is the date-rape drug. That is why I hadn't said anything before. It is very controversial I'm sure and it has never been used for this specific condition like mine. Dr Reite and my PCP feel that I may benefit from it by hopefully attaining 4-6 hours of sleep a night. They feel it would improve my energy levels and I am sure my cognitive levels! I am excited and apprehensive at the same time but if I get a good outcome it will be well worth it! Dr Reite is going to contact the pharmacological company that makes the drug to see if they will even approve the use of it in this trial. I just hope it works!
Please, send Dr Reite your info if you would... please! We will never find the answers unless we band together to find out what all we hasve in common and then hopefully start finding treatments that will give us a better quality of life. Let me know what you think about all this. I hope y'all are having a really good day! :-)
deleted_user
deleted_user

I have had a weird sleep thing too! When I was 24 I had a terrible flu and within a few days I started waking from sleep anytime in the early hours with an excruciating headache. It felt like to the top of my head was about to blow off. I would wake in a sweat and quickly learnt that I had to sit bolt upright and hold my head perfectly still because any movement at all, even breathing, caused the pain to surge. It would then subside over an hour or two.

After I got over this flu, however, the headache kept returning daily in episodes. I would simply wake up one day with it and it would come back every day until I simply woke up free of it again. Sometimes the episodes would last up to 25 days, several times a year. It only ever has woken me out of sleep and all started with that one awful infection. For years it was hell. I was too scared to go to sleep because of the pain when I woke up!

This went on until I was about 30 and has eased off heaps since. I still get a few of these headaches every once in a while but since it's no where near what it was for all those years I've dropped the subject and just deal with it. I really tried but I never got any answers except a 'possible benign intracranial hypertension'. Which never seemed to really fit but in absence of anything else it had to do at the time. I tried the modern migraine drugs for it too but they only made the pain 100 times worse.

Does this sort of thing count as a sleep disorder Vivian? It obviously was something that only happened in my sleep but I don't know if it really fits.