Previously I have reported no side effects , but as time goes on I’m having very strong dreams that are difficult to leave . Starting at about 4. / 5 am .Not nightmares . It leaves me struggling to leave the sleep world . Not getting up late ,just sometimes feel not Totally present on waking
Any one else relate to above !!!?
Yes I have had the same dreams since I started on Hydroxyurea. It makes me dread going to bed. Very weird but not nightmares than I feel I can’t get out of especially in the morning. I am unable to wake up fully in the morning like I normally would as well.
Nice to know I'm not alone . !!! But sorry you now arnt happy to go to bed . Maybe listen to a relaxing something might help? There is a free app called meditation timer . On it is 1000 s of guided relaxation , music , talks . I would think something to appeal to most people . Did your dreams start immediately on taking meds ?
That must be quite frightening at times.It is recommended that our meds are taken at night so that we are asleep in order to minimise side affects. Could taking hydroxi a little earlier help? Could it be that your dreams are related to hydroxi making you tired so more sleep is now required?
Hope you are able to find a solution.
Thanks for your thoughts . I take meds at about 5.30 pm . Yes definitely have more sleep .
Interestingly , since writing above I've had two nights of waking up feeling ready to get up and head almost clear.. .
What goes on in our minds and how it effects us fascinates me
I'd rather have the dreams and need more sleep than physical side effects .
Wow 5-30pm for meds, you can’t really go a lot earlier. Isn’t it lovely having that ‘I want to get up feeling’ I don’t get it very often now and miss it terribly. Glad you have. Let’s hope you get more of them but remember don’t beat yourself up if you don’t. Something I’m no good at 🥴
Thank you . Yes when I have the wanting to get up mornings it makes me realise how lucky I am . When I start to mutter to myself 'I've done something wrong to cause feeling odd' I remind myself I wouldn't do it on purpose !
Some things we have no control over .
But we CAN work on how we let ourselves think .....
I didn't know that, I've always taken my Hydroxy in the morning before breakfast.
I started it in the afternoon . Lol, as soon as the pharmacy gave it to me. It was only a small dose. It was suggest I take at night. It actually helped me sleep
Think it's what suits you. So if peoplehave side effects hey can try nighttime. I didn't want to risk worse symptoms so started at night
It is pretty miserable mostew. My seventeen year old cat has started to join me in bed when I surface from these weird nightmares. She snuggles up and purrs with her face close to mine until I am dosing off again. Otherwise I put my bedtime book from Open Library on for another hour. The droning electronic voice is quite soporific.
I wonder if these nightmares happen on days when I have not taken enough fluid. They remind me of the nightmare hallucinations I had with campylobacter.
How lovely to have such a devoted cat. Book is a good idea.
Yes maybe fluids ,but I doubt it is with me . I have plenty . Maybe to much ......
Borage, check out thiamine for your nightmares. The treatment for campylobacter may have impacted thiamine absorption resulting in those nightmares. Magnesium is needed to activate thiamine and there are many causes for loss of magnesium too. The stuttersence link contains a comprehensive list of anti thiamine factors that diminish or destroy thiamine. Activated thiamine is needed to activate vitamin B6. Pet foods often contain low levels of thiamine and magnesium even the homemades resulting in autoimmune, heart, urinary and other health issues. It's worth checking your pet's food too.
Yes I can relate,Mostew. I wouldn’t say mine are nightmares but sometimes strange dreams and I definitely find the greatest difficulty waking up in the morning. Feel I want to go on and on sleeping and on making myself get up I’m like a Zombie. I’ve forgotten what it was like to feel ready to get up and rarin’ to go.I’ve tried morning, noon and night at various times over the past 4 years on Hydroxy to take it and find for me after lunch is best, without mixing it with my other meds, some of which I take with breakfast and other two after evening meal. Regards Fran
Hello Fran,Glad you arnt having night either. What difference do you find taking at lunchtime?
Best wishes
Carolyn
Hi Carolyn. Well taking it at lunch time doesn’t make a difference to my sleep, difficulty waking up etc. unfortunately, but I felt when I was taking it with my B.P. , Prednisolone tablets in morning or with Statins and Clopidogerel in evening they didn’t mix well. I’ll now have a read of the links Hunter has kindly sent. Regards,Fran
Sorry to hear you are having this adverse effect. This is not one that I have heard of before, but a apparently a small number of people have reported it.
ehealthme.com/ds/hydroxyure...
What is more well known is the HU can cause hallucinations.
online.epocrates.com/drugs/...
It s not too big a a cognitive leap tp think these two things could be related. The suggestion of taking HU at a different time could be worth trying. Also would be sure to put some information together then reviewing this with a MPN Specialist.
Hope you get this sorted soon.
Thanks for interesting links HunterI would think it’s a very small leap to connect dreams to hallucinations. Both are made in the mind…
I don’t want to instigate different reaction that might cause more of a problem , so happy with taking in evening …I’ll definitely put some info together to discuss with MPN specialist in a couple of weeks..
because I do qi gong in the morning as soon as I get up it takes only a few mins for me to
Clear my head .
Invaluable practice . ( I know I’m preaching to the converted!)
I’ve just told my husband if I start hallucinating and can’t think straight to make sure I stop taking HU ……….
I am experiencing the same on hydroxyurea: very intense dreams and sometimes nightmares - and difficulty getting fully awake once I'm out of bed. It feels like I'm drugged when I first wake up.
Yes it is like being drugged. But I suppose we are ! That’s why I was so reluctant to take it ….
I have had some intense dreams, but not frequently since being on Hydroxy. The struggle to wake I strongly relate to. As if drugged as you say. Had thought it’s ET related fatigue, which I’ve had since before diagnosis, with high platelets starting some years before. The morning daze I find myself in means I often end up back in or on my bed, and sometimes back to sleep.
Yes I can relate, but I had dreams like that before going on HU so I didn't realize that was a side effect.
So not a side effect for you. Or have dreams changed in any way ?
No, they have always been on the weird side, at least the ones I remember
I do have weird and intense dreams although not every night. It never occurred to me that it could be linked to the Hydroxy. That said I also did not know that Hydroxy could cause hallucinations.
I hope you can come to some resolution for this.
Kind regards
Garry
Mostew. I have ET as well. I started having crazy and vivid dreams about a week or two into taking hydroxyurea. My theory is that since it is reducing the platelet levels, there is less RBCs in the blood. Therefore, less thick blood mix, allowing more neurons to fire in the brain. Before I started hydroxyurea I was no longer having any dreams. At first I liked it. But now I have vivid nigtmares and it sucks!!!
Hydroxy ling term use
Possible side effect?
HYdroxy
Besremi side effect?
