Hi folks, started PEG 6 weeks ago and it will not allow me to sleep, it won’t even let me nap during the day. On top of my 14 hr a day profound fatigue it has been a complete misery and I also hate the feeling of sleeping pills in my system. Thinking I may have to quit it, the alternatives depress and scare me so has anyone had experience of the insomnia subsiding?
And, should we be drinking some salt with all that water we’re drinking, I am constantly peeing. I have always been a good water drinker so maybe I’m over the top, but I am thirsty!
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Magentas
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Hoping your NY becomes happier as we all move forward...
Sleep Deprivation (SD), is something I am a long sufferer of... Absolutely aware of having this issue long before I was ever diagnosed w/ an MPN.
Obviously, w/ SD many other problems can arise if we do not find ways to adequately manage the condition.
Me... I try to keep cycling. E.g. Night before last, NO sleep at all... Up at 5AM hoping to go cycling early, however, it was looking inclement. Waited a couple of hours & then went anyways, (even tho' I was dead tired & no energy at all)... ???
Next night, (last night), Blissful... sleep in grabs... but managed some really good sized sleep bites...
I know, not everybody wants to follow my cycling example, but I suppose I am merely offering my exercise suggestion, as one solution, that really dose work for me...
I also hate taking painkillers, & all of the side-effects thereof...
Oh dear god, how awful, I’m sorry to hear of your SD and even prior to diagnosis, Steve. I have never been able to tolerate insomnia, thankfully, in the past it has only been a phase…usually to do with change of seasons and for that period of time I can take the odd sleeping pill no problem.This is completely different, totally wired. In the few hours I have some energy at the beginning of a day I do a bit of yoga and Pilates and/or walking and then a bit of house work and that’s me done for the day. I can’t imagine how I would find the push or the time to cycle but I admire your tenacity and pleased to hear it gives you some respite.
I will take what you say on board and force myself to do some Pilates or something before bed, I do believe that will help something at least.
I have had chronic insomnia for the last 25 years. Both the JAK2 and NF1 mutations can cause insomnia through different mechanisms. Lucky me - I get both. The PEG has not made any difference one way or the other. I practice very good sleep hygiene. I have tried every OTC and most prescription meds. I have only found one thing that works. Belsomra is one of the newest of the sleep meds. It works differently than other sleep meds. Belsomra reduces the amount of orexin in your brain - the "be awake" chemical. It allows you to fall asleep naturally and get quality sleep, The problem with most sleep meds (like zolpidem) is that they can sedate/knock you out but they disrupt sleep architecture. You "sleep" but do not feel rested. Hen you take Belsomra you can still wake up if you need to (e.g. crying baby) and you do not feel sedated/loopy. You just sleep and feel rested the next day.
I am not in a position to say whether Belsomra is the right choice for you. Many docs are still not familiar with it. More complicated since nearly all docs are not familiar with MPN/treatment manifestations. Suggest reviewing options with the MPN Specialist before throwing in the towel.
On the non-chemical side, there are some things that help. I do also use some Qigong practices (Six Healing Sounds) as well as the aforementioned good sleep hygiene. If you can find someone who practices Cognitive Behavior Therapy for insomnia that can also really help.
I have gone for years without adequate sleep and know just how difficult it can be. I and glad I found something that works for me that does not have any adverse effects. I hope you can do the same.
My sympathies, Hunter. Indeed, ‘lucky you’….you sure have had some bad cards dealt. I read about your Belsomra suggestion the other day on someone’s post and have my script to pick up on Monday, they sound great!Sadly, it is just the PEG reaction so I don’t think you’re other 2 suggestions would work but I thank you for your suggestions. I shall look up Six Healing Sounds just as a matter of course though.
Blood test results tomorrow so I’ll see where that takes me.
Not sure how it works down under, but Belsomra comes in 5-10-15-20 mg. Most docs would start with 10mg. Gad to hear you can access it. Belsomra really is a game-changer for people with chronic insomnia.
The CBT might not help, but is worth a try. The Six Healing Sounds is a Qigong breathing exercise that I do every night, It promotes calm/mindfulness. It does help to promote sleep. It helps to have someone who can really teach you how to do it. Much more effective that way.
That’s encouraging and yes fortunate to have it here, it’s generic/chemical name is Suvexorant, I was offered the choice of 2 doses and I choose the lower one as I am a light weight these days, I can’t remember what it is. I am very much looking forward to trying it tonight!I occasionally do breathing exercises (I like Kumbhaka from the ‘Calm’ app) so I can add that one you mention to my armoury, I’ll look it up on YouTube.
It’s horrible when you can’t sleep. I only get it trying to get off to sleep but once asleep am out like a log. Hope you get it sorted and good luck with blood test results. They should check your thyroid regularly if you are on peg and that can cause sleep disruption if it goes a bit haywire
I have the opposite problem, waking up after 4hrs and being unable to go back to sleep, it’s hard to know which one is worse… they’re probably the same. Thanks for the thyroid tip.
Yes, it is, I am so sensitive that’s why I kept it low…too see.I’m taking a break for now but yes I guess I will have to try it, I just know with my sensitivity I will end up with mouth ulcers, no hair and then there’s the lowered immunity, I’m so depressed being in lockdown….as most of us are, of course, such hard times.
I too suffer with disturbed sleep on PEG. My issues started after a few months of taking PEG in a high dose. I now take a herbal supplement to help me sleep (not a prescribed sleeping pill as I also don't like taking them, but my Haematologist is fine with me taking Nytol when needed) but I only need to take it two days after my injection and even then I don't always take it. What I have found is that I start to fall asleep OK but sometimes I dont get into a deep sleep and I am aware of everything going on around me (husband snoring, cats walking around, clock ticking) and this pulls me into full wakefulness and then I struggle to doze off. It makes me cross and then its even harder to fall asleep! When this happens I get up. I read my kindle in another room for 30mins or so and then I go to bed again. Usually, but not always this helps.
I also do a lot of exercise (bootcamp three times per week and tennis at least twice) and this helps because I am then physically tired. I noticed over Christmas (when I did not exercise for over two weeks) that the sleep issues, as well as some other symptoms, were worse.
With regards to being thirsty - on the day of my injection I have to make sure I drink a lot of water, otherwise I wake up with a fuzzy head (like a hangover without having been drinking). On a daily basis I drink 2 litres+ of water. Which also means I often wake up in the night to go to the bathroom....
This is all good information thanks much for sharing your experience and for the Nytol tip. I can totally relate to all that awareness when you’re supposedly ’asleep’.
I wish I had some good advice. I have suffered from insomnia issues for almost as long as I can remember - when I was younger I always just thought I might be one of those people who doesn't need more than 5 hours of sleep a night - I can totally function on that amount nowadays but I feel so much better when I can get 7...the Peg has seemed to make it worse as well...I am going to try the Belsomra and I second the exercise idea - when I get a really good/heavy work out in during the day (but it needs to be more than a notch above my normal work out) I tend to sleep better that night (but personally have to do the exercise before noon) - good luck!
Hi I’ve just picked up on your post, I find head phones and listening to something works for me. It could be music, news documentaries anything that interests me. It’s quite funny I wake up realising that I never did finish listening to a programme and it’s follow on episodes and that I have slept!!
So sorry to hear of your problem, Magentas. I don't know whether my more minor issues with waking very early are from the MPN or the 45mcg of Pegasys. One thing that reduced that issue and gave me a bit more energy during the day is to inject first thing in the morning instead of in the afternoon or evening. I hope some of the advice and the new medication help you. I am amazed how helpful one person (Hunter) has been to everyone on this board.
Hi Magentas ! I think many of us have the insomnia problem-- more or less. It comes with our diseases and when it get worse with Pegasys, I suppose it is because your body signals a sort of aenemia and lack of oxygen: The killing of bloodcells creates periodical lack of "vital blood" + a sort of "aenemia" during the process. Aenemia until the balance is reestablished and lack of oxygen due to all the "waste products" due to the process of destruction.
I use to make the laundry and heavy cleaning just before bedtime (I've never had a TV ha ha !) it works wonders and I try to do most of my drinking before afternoon, cause all that peeing ruins the fun of the sleep--too !!
Cycling is perfect too-- but always remember to stretch solidly before bedtime, otherwise you will get restless legs-- which also is a joykiller 😑-- of great dimensions !!
Hi Yarrowleal, thank you! That is all great information, very interesting… also very interesting that you’ve never had a TV, I admire your conviction I have been finding that I have some energy early evening probably because I’ve been laying down for pretty much the whole day so really should get cracking on some house work myself when not too tired.
I was on such a low dose that I didn’t have any kind of anaemia, all my other bloods were fine after 6 weeks and my platelets remained at 750, I think I am just ultra sensitive which is a real pain because I’m worried about how I will fare with HU.
I have extreme exhaustion, almost all day now and coupled with the tiredness from the peg was ruinous for me.
Had a really weird feeling of unease in my body, too. Also a reaction at injection site, but that kind of settled when I moved to my thigh.
The stretching tip is extra good… I have been getting a bit of those restless legs at night!
So sorry for you. Have you ever had your body checked to see if you get enough/the right vitamins. Vitamin loss are another pest to us. Sadly we aren't allowed to see to our iron defiency, but all the other minerals and vitamins can be balanced so we get a highter level of energy.
And then there are the special lamps which can add daylight to our hybernating winter-souls 😉
That’s very sweet of you, thanks Yarrowleaf. I get the basic vitamins checked, D, iron, B12 from memory. I have always been innately aware of what is healthy or not and am a bit of a food Nazi when it comes to eating well. I only eat meat once or twice a week max, maybe I need more red meat. I was actually just starting to pick up on eating more lately but now our our supermarkets in Australia are completely void of meat…. same as the US and UK I imagine, so that will have to wait.I am astonished at my appetite (although it’s not that new) I go from 0 to 100 into feeling famished in a heartbeat, at least it’s every 4hrs more or less but I eat more than my husband, he is still slim, I was too until the pandemic and the progressively worse fatigue that keeps me sedentary. Ugh.
What do you mean by ‘you are not allowed to see your iron deficiency’?
I do very much suffer from SAD (otherwise I would be back in the UK living in my husband‘s country of birth). Because of La Niña this year summer’s been awfully grey and wet a lot, it got me to thinking of those lamps.
When I researched them a year ago I was a bit confused as to what was what, do you have any tips, Y?
Hi again-- About lack of iron, iron doesn't figure on the test results on our "healt sites" (where we can see resultsof bloodtests) and if you start mentioning iron, at the hospital, they say that iron is dangerous and ought to be avoided "because it raises the level of red blood-platelets". Sadly, the docs do not think of food at all, in general, which is ridiculous because we get most of our vital stuff through it.
The lamps :: I cannot advice you. I know friends have them but nothing about firms have been mentioned /praised.
I, myself, am an artist and I use light bulbs with a very very high K (Kevin)(cold cold light, but still extremely pleasant)-- I have an idea that these are better. I use 4000K mostly and sometimes 3000K.
Try to look them up on the net. They only cost a fraction of the daylifht lamps. I've never been thinking of it before you asked --- but surely they are better.
You will be a little shocked, at first, of their energy, but you'll get used to them and beside of being good at reading the right colours of the paint, they are good for readers-- sort of make the text look more clear.
If you cannot find them in USA I can send you one.
Thanks for your very kind offer Yarrowleaf. I have an intense dislike of those ‘daylight’ light bulbs, I find them very cold, but needs may in the end, there’s no hurry.
Now I am very confused about the iron. We are allowed to see our iron levels on our blood tests in Australia. What are they saying at your hospital, in terms of eating heme iron rich foods like red meat?
FYI - Something I learned from my aunt who runs geriatric care enters. When using full spectrum lights that look like a cold blue, also include warm lights to balance things out. I used to do this in my office. It worked great. SAD is definitely a real thing and exposure to full spectrum light can make a big difference.
Hi -- I just answered hunter 5582's similar comment on Iron.
In fact I have not mentioned it at the blood unit, I need to be in a good mood when working --sorry !!
I too wonder about the red meat thing. It is not easy. You are 67 and whith at least 20 years of education behind you at different universities and your doc. is around 25 and totally green. You can't say much without scaring the wits out of him. When I ask them to read my medical records, to maybe find reasons, they answer that it is all too much to read !! :/
Oh boy, so frustrating, sorry to hear, Y. I totally understand the green thing, often we are fobbed off to registrars for specialist appointments.Absolutely shameless saying it’s all too much to read, bloody hell, so disrespectful and unprofessional. Sorry, it’s made me angry as well, so I’m having a little rant for you!
Understand being in a good mood but maybe you’ve got to be demanding and mean. Remember that old phrase, ‘treat ‘em mean and keep ‘em keen? Lol.
And then there’s always ‘the squeaky gate gets the oil’…. sorry, it just ain’t pretty out there sometimes.
What do you mean you are not allowed to see your iron deficiency? What the bloody hell! The lab results are your property, not the providers. If they have run the lab you have a fundamental right to see it. Period. It is one thing if they do not run the lab but if they have it, it is your record to review whenever you see fit.
It is true that for people with PV that iron should usually be avoided. Unless they actually become anemic. Otherwise it would exacerbate erythrocytosis. The flip side is that for people with thrombocytosis, iron deficiency can exacerbate the thrombocytosis significantly. It is a balancing act.
It is ALWAYS your right to see all of your labs and procedure results. Providers NEVER have the right to limit your access to your own results. This is one of the most fundamental of all patient rights.
Hahahah --- I like the strength of your expressions Energy is always a great thing.
The thing is : We (at least ET patients) don't even HAVE our iron level measured !!! AND STILL if you mention the word iron in a consultation, you could as well have mentioned "the four horsemen" or bring your bull-mastiff.
They grow utterly pale !!
Lack of real knowledge seem to be a virtue among our new university freequenters (I think it is because they have removed the Humaniora year from all studies).
What seems even more ridiculous, is that they do not take food into their consideration. If only they presented a food plan (like they used to do with Parkinson patients). Like : eat this but not that, in order to feel safe. Tsk tsk tsk.....
Well that makes a bit more sense. I just could not imagine having lab results that were not shared with the patient.
If you do in fact have ET, then you can usually infer your iron levels by looking at RBC/HGB numbers. The norm for ET would be to have normal EPO , normal iron. and normal RBC/HGB numbers. Were you to have low iron or low EPO and normal RBC/HGB then you would want to be asking some questions.
It does seem a bit odd that the docs would have such a reaction to iron metabolism. It is just one part of a comprehensive look at your nutritional status. It can be relevant for people with MPNs, but is germane for many others. Many doctors are not well trained in nutrition these days. It seems to have been dropped from the curriculum along with the Humaniora year. This is quite unfortunate as what we eat can have a profound impact on our bodies and how we manage a disease.
I attended a training as part of my CEUs called "The Pharmacy in Your Kitchen." Foods, beverages, herbs, etc. can all have significant medical benefits when used in the right way. It is quite unfortunate that some docs lack knowledge in this area.
You are quite right to notice that one of the things the really gets me fired up is when providers fail to treat patients with respect, fail to provide the opportunity for meaningful informed consent, or fail in any other way to fulfill their core responsibility to ensure the rights of the patient. This happens all too often and should not be tolerated.
Thanks friend. A little fresh TNT in my powerbank 😎. And thanks for the info. I am using food to cure horses and nobody find it weird, so why does more people not think of trying it themselves ?I know that in the late 19th century ( along with Walden and strolling in nature) there was a massive interest ( a ong the better off) in healthy food. Healing food. But I suppose the quacks ruined a lot.
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--- but surely they are better.
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