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Does my odd sleep disorder make me a bad HT candidate? Advice needed!

S

soundasleep

member
I have been researching HT procedures and surgeons for a while and am almost ready to schedule something. I would be restoring/lowering my hairline and temples only, nothing on the crown.

I know that it is very important not to scratch, rub, or even touch the transplanted grafts for at least a week after surgery (I see different numbers thrown around...maybe up to 10-14 days?).

My problem is that I have a parasomnia where I touch and rub the front part of my scalp, above my forehead (i.e. the exact are I want to restore) while I sleep, every night. I have no control over it and it happens every night. Mostly in bursts of a 2-10 minutes at a time, but often multiple times per night. Probably a total of about an hour of touching/rubbing per night. Obviously this would not be good post-op and would seemingly make surgery pointless, since I will probably ruin the grafts.

I am experimenting with ways to restrain my arms while I sleep. I tried binding my wrists together, but it didn't stop the movement. I end up just moving both hands together.

So...my questions:

1. I have sleep caps that are snug, and prevent me from actually touching my hair (i.e. I just rub the cap) - but my understanding is that caps are also a no-no immediately after surgery. Any ideas for some kind of head protection that doesn't actually touch my hair/head?

2. If I do find a solution to this problem, how long would I need to implement it, to be REALLY REALLY safe about the grafts? I want to err on the side of caution. 2 weeks, then I can use the caps, maybe?

I guess everyone runs the risk of scratching, etc. during sleep, but with me it is guaranteed...

Thanks in advance for any advice. It's very frustrating that this may prevent me from moving forward with a HT.
 
T

Teh Daddeh

Valued member
I'm pretty sure that Dr Ball mentioned that one of his other patients used handcuffs...

A bit extreme, but you really don't want to be ruining those beautiful grafts.
 
H

Hoping_for_hair

member
I don't move around as much as that but I got a weighted blanket after my HT as I was worried about accidentally doing something to upset the grafts. Makes it harder to move about and get your arms out from under it (and actually is quite a nice feeling - like being tucked in when you were little!).

Other than that or handcuffs! You could try to tie your hands together with something a bit longer then put that rope (or whatever) under your body? That way it might be more comfortable having your arms by your side but your body will be on the rope so should stop you being able to get your hands to your head? Maybe try a few different things before you have the HT to see what works and if you can get something that feels comfortable?
 
Bigmac

Bigmac

Administrator
Staff member
Hi Soundasleep.

Have you seen any sleep disorder professionals to see if they recommend a particular type of treatment or find out if there is an underlying reason you scratch your head?
Do you wake up during these episodes of scratching?
Does the scratching result in breaking the skin and bleeding?

Have you tried sleeping in a more upright position? Such as in a chair or a recliner. If so, did you still scratch?

The grafts are secure in your head after day 4 but you obviously do not want to scratch the transplanted area as this could cause inflammation and possibly infection. Again, how hard do you actually scratch?
A possible solution would be to have someone stay with you after surgery. For the first few days, you spray your grafted hair every few hours anyway which disrupts your sleep pattern. This may sound extreme but you could sleep in some sort of chair that allows your wrists to be taped to prevent movement. Whoever stays with you would spray your head and keep you safe in an emergency, ie, a fire situation. They`d be able to release you if you required the toilet during the night. You could try changing your sleep pattern to stay awake during the night and sleep during the day allowing the carer to take care of you without disrupting their own sleeping. It certainly is a dilemma for you.

Have you had any consultations? If so, what did they say about this?
 
S

soundasleep

member
Thank you for all the suggestions! I am getting more ideas now.

I'm pretty sure that Dr Ball mentioned that one of his other patients used handcuffs...
I have been trying what are essentially handcuffs (i.e. workout cuffs for exercise bands, tied together) and none of them have worked 100% yet. I tried connecting them just 5 inches apart last night and that almost worked, but there were a few times where I was able to get both hands up to my head and rub around a bit.

I got a weighted blanket
Good idea but a weighted blanket would not stop me! Unfortunately my arms/hands are extremely persistent with this action...

Other than that or handcuffs! You could try to tie your hands together with something a bit longer then put that rope (or whatever) under your body? That way it might be more comfortable having your arms by your side but your body will be on the rope so should stop you being able to get your hands to your head? Maybe try a few different things before you have the HT to see what works and if you can get something that feels comfortable?
I really like the under-body idea! But I tested it out (awake) and was too easily able to slide the string up underneath my back, toward my head. Going to try it with a shorter length of shoestring.

I definitely will be trying to test and solve this problem before scheduling a HT. Can't risk losing the deposit (both doctors I am considering require non-refundable deposits at the time of booking).

Hi Soundasleep.

Have you seen any sleep disorder professionals to see if they recommend a particular type of treatment or find out if there is an underlying reason you scratch your head?
Do you wake up during these episodes of scratching?
Does the scratching result in breaking the skin and bleeding?

Have you tried sleeping in a more upright position? Such as in a chair or a recliner. If so, did you still scratch?

The grafts are secure in your head after day 4 but you obviously do not want to scratch the transplanted area as this could cause inflammation and possibly infection. Again, how hard do you actually scratch?
A possible solution would be to have someone stay with you after surgery. For the first few days, you spray your grafted hair every few hours anyway which disrupts your sleep pattern. This may sound extreme but you could sleep in some sort of chair that allows your wrists to be taped to prevent movement. Whoever stays with you would spray your head and keep you safe in an emergency, ie, a fire situation. They`d be able to release you if you required the toilet during the night. You could try changing your sleep pattern to stay awake during the night and sleep during the day allowing the carer to take care of you without disrupting their own sleeping. It certainly is a dilemma for you.

Have you had any consultations? If so, what did they say about this?
I should clarify, I don't actually scratch. It's more of a rubbing, where I drop my hand onto the front of my scalp/forehead, leave it there a bit, and then drag it around and down. WIth the full weight of my hand/arm. So there is no danger of scratching/bleeding, but it would definitely disrupt grafts. Also, I don't wake up.

I have consulted professionals and there is not much that can be done. Possibly very strong sedatives would stop it, but I don't know how I could get those, and don't really want to go that route. I have probably been doing this for 20-25 years.

A 'caretaker' might work but as of now I don't think it's an option.

Sitting upright might work, I haven't tested that out yet. I have a couch but that wouldn't give me any neck/head support, so I probably couldn't sleep sitting up on it. If nothing else seems to work, I may just have to purchase a recliner and test it out

I have had consultations but did not think to bring this up (yet, at least). I don't normally think about it, but then I realized it would probably be an issue. I could reach out to the various doctors again, but I suspect they will have similar suggestions as I'm getting here, so I figured a forum reaching more people might be better. But it's an option. Who knows, maybe one of them will have a great idea.
 
Bigmac

Bigmac

Administrator
Staff member
If you don’t wake up, is it a family member who alerted you to this behavior?
Is it possible to book yourself into a sleep insomnia place to have this looked at with the possibility of mild sedatives to aid in the sleep process?
You could try sleeping upright/angled on the sofa or similar with a neck pillow or a maternity pillows. See what happens
 
S

soundasleep

member
Yes, I have had various people over the years tell me about it. Sometimes my arms make wide motions, so if someone is next to me...there can be contact...

Last night I tried cuffs with just ~5 inches in between and it almost worked. But a few times I was able to bring both hands up together and mess with my head.

I'm going to try the upright/angled approach with extra pillows on my bed, along with handcuffs, to see if that works. I guess a sleep clinic could be an option, but I have a strong suspicion this is not very correctable...
 
Bigmac

Bigmac

Administrator
Staff member
Try the V shape maternity pillow, they help keep your head in place when sleeping at an angle which is what you`ll be doing if you manage to get an HT.
Let us know how you get on.
Wishing you all the best with it.
 
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