Hi everyone;: I'm on hydroxy the 500 1 pill a day I take at night. I've been on it for about a year with no problem. I find usually I fall asleep very quickly and get a good deep sleep. However, sometimes when I have to get up and pee during the night I have to perch on the bed and wait until I can get my eyes open enough to walk to the bathroom that it almost gives me too deep a sleep that I have to fight to get out of it if I have to get up in the night.
Last night I must have been extra tired because I got up and was totally disorientated in the hallway almost sleep walking.
Does anyone else noticed/found hydroxy gives a really deep sleep and find it a probelm? Any thoughts? I see my Doctor in Sept. I might try taking it a hour or so before I go to bed see if that helps.
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jeanr
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Hi Jeanr, Im afraid I'm not much help. As I don't have that problem. I take mine around 8pm and it doesn't make me drowsy. Had you had any other meds or alcohol that were sedating? I've heard of it happening with Ambien which is a sleeping aid. That was in folks not on HU. Hope you find an answer. Katie.
Thanks for the reply Katie. Yes, I'm also taking a thyroid pill at the same time. I will read up on that pill too. I think I'm going to experiment with taking hydroxy earlier in the evening I am however, grateful its working well. My other thought is that as its summer and I'm outside more that the combination of fresh air and HU are making me go into this deepness.
Hi jeanr. I've been taking hydroxy for over 2 years now and yes, I take mine late on too. I do find it hard to get out of bed in the night and sometimes in the morning too.. I've been known to stumble to the toilet in the night with one eye shut as its too much effort to open it 😳. The sleep is a bit like a drunk sleep (without the alcohol). I asked my consultant but I have other health issues with my liver and all of these things cause extreme tiredness so it's hard to pin down the cause. It's my only side effect though so I consider myself fortunate in that. Hope that helps. Happy snoozing 💤😴🤕x
Thank you for your reply and I liked your description - which is very accurate, exactly what I'm experiencing!!! I am also grateful hydroxy is working well with only this as a side effect, and often I'm just happy to conk out so quickly at night. I'm going to try taking it earlier, and I think I might try a little nap mid afternoon see if that makes a difference, and maybe a night light might help focus me so I don't go down the stairs. All good wishes.
I have certainly been sleeping better since I changed taking HU from morning till evening. I was taking it before I went to bed around 10 - 11 pm but have changed to immediately after I've eaten around 6 - 7pm - drinking so much late at night meant I had to get up more frequently. This seems to work reasonably well. However, I feel the combination of food +HU and it being the end of day means it is difficult to stay up till 10-ish. I just tell visitors staying over that I can't last any longer and go to bed usually falling asleep almost immediately. Sallie
Hi Sallie, Thanks for your reply. I'm going to try taking it earlier in the evening around 7/8pm. If I wait until around 10 or 10.30 and take it with water, I then have to get up around 1 pm which is when I seem to be in my deepest sleep. I like having a good sleep with it, its just how disorientated I get. I'm going to experiment with a short afternoon nap too, see if that takes the edge of my tiredness at night. I also wondered as it has taken the platelet levels down a lot- if how well its working is impacting how well I sleep. Anyway, I am grateful for everyone's input and experiences. its good to hear from people. All good wishes. Jean
I was interested in your reply, and when you take it. I am going to try and take it earlier in the day. I was sorry to read you don't get a good night's sleep. I do sleep well, but I find that if anything is worrying me I wake early and then its hard to get back. Yes, you are right we all tolerate meds in different ways. I appreciate you replying and was also interested to hear how long you have been on HU -- has your dosage stayed the same? All good wishes. Jean
Thank you for your reply. I was interested to read of your experience. I was sorry to hear that you sometimes find it hard to get a good nights sleep. I was also interested to read you had been on hydroxy for 11 years- have you had a change in dosage during that time? With all good wishes, Jean
If my platelets are on the high side then it is increased and if other blood cells are too low then the meds are decreased. I have varied from 4 - 12 tablets weekly. I am currently on 6 weekly.
Close monitoring - a blood test every 2-3 months and a follow up telephone consultation with the Haem nurse.
I see my consultant once a year at the moment. It is my choice to have the telephone clinic appointments, I could go to the out patients to see my consultant for every appointment but my blood levels are reasonable stable at present
The nurse always consults the haematologist before my telephone appointment and will ring back if I have a question she cannot answer.
Thank you for the information, that sounds like such a good arrangement with the follow up telephone conversation with the nurse. I'm hoping to get to that stage soon.
It sounds like you have a good arrangement that works well. Actually its very impressive. The clinic I got to sometimes its okay, but sometimes they are really behind with appointments and I've seen people give up and leave because they are running so late.
Anyway, good wishes, good to here you have got such a good system and you've been on hydroxy for a good length of time.
I have had a couple of times when the appointments at Out Patients are running late, but there is always a reason and I think that one day I might be the patient who needs more time from the consultant so I try to be calm and just take a good book.
My care comes under Colchester Hospital which is always in the news for under performing but the haem dept seems to be quite good.
Thanks for your reply. I'm glad Colchester Hospital is so good in the haem dept. Yes, its not often my appointments run late, I think the worst aspect which sounds very mundane is its very hard to park nearby and very pricey and meter parking so you have to keep feeding the meter.. All good wishes, Jean
Yes when I was on Hydroxy I had same experience as to seep well and deep, which I loved it and being disoriented. However, I have same problem now to be disoriented even I am not on Hydroxy now two years.
Hi, thank you for your reply. Yes, I like the deep sleep part, I just started getting worried that I was so out of it that I was going to fall downstairs. I'm going to try a different time of taking the pill. I was interested to read that you still get the disorientating feeling. As someone pointed out, people react differently to the meds and also maybe age is playing a part (I'm almost 73). All good wishes, thanks for responding. Jean
I remember that doc told me to take Hydroxy at night due to this sleepy, disoriented state of mind and it is safer the have it during the day when we are awake and more active and that this can be rather difficult for us to move safely around. I hoe this helps.
Hi Thank you for your reply, I didn't get told when to take it originally, but I read that people took it at night to sleep through any queesiness when starting it. Yes, it seems to be a bit of a balancing act you want to take it at night to sleep but then if it makes you too sleepy its a problem, - I'm trying it a bit earlier now and I'll see if that helps. All good wishes, Jean
I take my hydroxy after my evening meal and like Sallie by 10pm I am ready for bed. I have actually got into the habit of donning my jim jams about 9pm. Living the dream eh!!! I drink copious amounts of water and am now trying to limit my intake to none after 7pm as I really resent the frequent trips to the loo at night. I also use an eye gel last thing at night which is very soothing but means that when I awake during the night my eyes are closed and being drowsy, it seems too much effort to open them. What a pretty picture I must make in the wee small hours shuffling to the bathroom! I suspect my deep sleep is due to the hydroxy. In my effort to remain as healthy as possible I have really upped my daily exercise too which is bound to make me tired. Luckily so far no other real side effects especially since my GP prescribed Aveeno for my dry skin. Hope you can figure out what works best for you.
I had a chuckle about the jim jams and your comment! I'm going to have to experiment with a different time frame probably a move to a supper time to take hydroxy and like you limit water too. I've also in the last coupe of months been really making an effort like you to exercise more in an attempt to stay as healthy as possible, and also I'm outside more in the garden, so the fresh air has probably added to my deep sleep, as I haven't had this much of a problem before with being disorientated - it just has seemed alarming - I have had visions of waking up tumbling down the stairs and breaking a hip. After two nights of my semi sleep walking my husband is on high alert.
I use a couple of different things for dryskin- my scalp gets really bad in one spot so I got prescribed Betaderm for that, and then I slather my tummy with noxema before during and after a shower.
I've so mjuch appreciated everyone's input its nice to know you're not alone out there. All good wishes, Jean
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