Most people with Red Skin Syndrome will have likely experienced insomnia at some point during their steroid withdrawal. This is likely because of the link between the stress hormone cortisol and sleep. Long term use of steroid drugs interferes with our HPA axis and could explain why insomnia is so common in TSW patients.
In normal people, the cortisol levels are lowest around midnight and highest about 8 am. This promotes a healthy night's sleep. When our natural rhythm is disturbed, problems can occur.
I bought a fitness tracker back in December and one of its functions is recording my sleep patterns. I immediately noticed a recurring pattern with my sleep cycle. It takes me a long time to get to sleep, even if I go to bed early. I dont usually fall asleep until about 11:30 pm. I then go into a very deep sleep for an hour or so, followed by a light, broken sleep. At around 3-4 a.m. I wake up and them I'm wide awake for an hour or more. I'm usually hungry too, which I believe is due to low blood sugar levels. I then drop off again and enter a really deep sleep cycle, which is unfortunate, as it coincides with when I have to wake up. When the alarm goes off, I'm really tired and shaky. If I don't set the alarm, I will have a deep sleep cycle between about 5-8:30 a.m. and then wake up. So basically my sleep cycle is the wrong way around.
Over the next few weeks, I'm going to be trying different things to help my insomnia. The first thing I've tried are Kalms Night tablets which cost about £5 for 50 pills. They contain valerian root extract as the main ingredient.
I was surprised that the nightly dose was 4 tablets. This means that each pack only has enough pills for 12 nights. The tablets were sugar coated and easy to swallow and tasted pleasant.
I have nearly finished the pack and haven't noticed any difference in my sleep pattern. The fitness tracker data confirms that my patterns have been exactly the same as when I don't use the tablets.
Therefore the Kalms Night tablets didn't work for me, unfortunately.
Back to the drawing board. I'll be trying more remedies soon in the hope of finding the elusive cure for my insomnia.
On the plus side, my skin is REALLY good right now, but more on that in another post!
14 comments:
Hi Louise! Are you from the West Midlands area? I'm 3months into TSW, 25 and from Birmingham. Do you know if there are any social meetings for people on our journey from the WM area? Would this be something you are interested in? As you can imagine just 3months in I'm already in total misery and would love to speak with others who have gone through or are going through this. Thanks, Keshia.
Im so happy to read about this side of tsw! My skins is so much better (2.5 years in), but this is the one thing that hasnt let up! My pattern is the same as yours. Sigh. Ive tried many things, including kalms and prescribed medication which just makes the 2/3 hours i do get, such a deep sleep, i feel hungover the next day. Im about to try milk thistle to cleanse my liver as ive heard that can cause insomnia. Thanks again and good luck!!!!!
Please let me know if you find something that works! Wishing everyone a sweet sleep. X
Hi keshia.
Yes, I'm from lovely Walsall!
I've had meetups with other TSW people and it was great. The first was in London a couple of years ago, at a time when there were only a few of us.
Later I met up with blogger miss kitty in wednesbury IKEA!
The third meet up was in Walsall art gallery. A small group of us had coffee in Costa and compared stories. It was brilliant to meet others in a similar situation.
If you are interested in organising a Midlands meetup, you could start a thread on the ITSAN forum or Facebook red skin group. There are a few of us dotted around in the west mids.
It is definitely worth doing!
Thank you for getting back to me! That's great to hear, I think it would really help me to meet others and talk about it, instead of always boring my friends and family. I haven't even joined the ITSAN page yet, I've just been reading reading and more reading but I think it might be helpful to interact with others! How are you doing these days!? I have to credit you so much for your peserverance, I'm only at the start and have days where I could just stay in bed and cry! Your blog is great and so helpful for us newbies.
Keshia
I'm doing great Keshia! It does get better, but it is a long road. Please join the ITSAN forum, as it's a great place to chat and make TSW buddies.
Also in the midlands- stourbridge :-)
Fab! I was only there a few weeks ago, trying out the new trampoline park with my sons.
Hello louise. I was just wondering how you are doing with regard to your inhalers? My head was melting from wondering whether or not they were prolonging my withdrawals so I emailed Dr.Fukaya and he said that you can do TSW while still using inhalers. You seem to be doing well so I wondered if you were still on them. I tried to make this post yesterday but I don't think it went through. Hope all is well.
I'm still on the lower dose seretide 50. I've got a meeting with my asthma nurse soon, so I'm going to have a chat with her about my options.
Ideally, I'd like to be off them, but it's a delicate balance finding a compromise, as there's no guarantee that the alternatives would keep my asthma as well controlled.
Good to hear that Dr Fukaya thinks it's ok to use them, so maybe we will still be ok whatever happens. X
Hi ladies, I have been reading a lot about this and have started my journey, you can get Phenegran on a prescription sometimes from pharmacy, I had it son years ago now when the itching and sleepless nights were bad. It properly knocks you out think it is for travel sickness but it is very good, in USA you can buy it in dollar mart their equivalent of pound land. I am in Kingswinford x
Louise have you tried Phenrgran for sleeping? Julie x
I've heard of phenergan, but never tried it. I think it's only available on prescription, but I'll look into it.
Another thing I found good but difficult was to not moisturise at all, it was very difficult but the skin won't moisturise itself if you keep moisturising it p. Without the moisturiser it starts to heal itself, I found bathing in Dead Sea salt very good, they sell big sachets at TK ma X they are £3.99 and good for 1 intense bath or 2 baths. I found this really helped my skin.
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