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 email@example.com? 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!
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Hi All,I wa diagnosed about three years ago with CVID. I have been doing sub-q Hizentra since then and really have had no problems. The last few times, I have had my legs and/or feet want to start cramping. I just did my infusion this last Tuesday and Thursday night I woke up with the worst leg cramps/charlie horse. Has anyone else experienced anything like this? Is it related to the...
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