TOPIC:

I was diagnosed in Nov 2019 , platelets are in the 35-40K range without treatment . Suddenly I am unable to sleep thru the night , it started with just waking up in between and being unable to sleep again but now it is like I am wide awake till 3 and I sleep only around 3 o clock - getting only 3-4 hours of sleep per day.
Anyone else experienced insomnia , if yes any ways to deal with it . Taking 1 mg melatonin a day but it isnt helping that much and I am not sure if it is bad for ITP. This is creating a lot of anxiety for me during the day , any ideas that could help me pls share .

Hi RR01, Has your insomnia improved or changed at all? In my experience, my insomnia is due to some particular stressor. If I have to visit a new client, go to a new doctor, something like that. Its a rather stressful time now, do you think the pandemic has affected your sleep? Also I've had insomnia when starting a new drug. Nplate occasionally causes insomnia if I have a dose increase. I do a visualizing meditation for sleep when I need it. It was taught to me in "energy work" classes. Where I imagine people from the day, problems, conversations, demands.. imagine them in a bubble and blow it up, clearing yourself of that energy, stop solving problems, ending the day. Another practice is acupuncture, that has worked for me as well, for neuropathy, sleep and anxiety. I have never tried melatonin so can't give advice there. I sleep better if I don't eat anything after 7pm. Also my acupuncture practioner said no blue light (computer phone screens) after sundown. Hope you find your answers!

Thank you poseymint! It hasnt improved at all I am feeling anxious for no reason. I am tired but the minute I close my eyes I cant sleep it just doesnt happen and I am wide awake. Again in order to not being anxious I look at my phone , I feel tired but I just cant sleep. I will try your visualizing technique, I feel pulsating sensation in my head if I dont sleep entire night - more than a headache like as if my brain is moving kind of feel... I am not sure if it is just the anxiety thing .

RR01
Sounds like you have got yourself into a bit of a Catch 22 situation here.
The blue light emitted from a phone is linked to melatonin suppression and poor sleep. There is a wealth of information out there regarding this.
Do you have a caffeine intake. There is also a wealth of information about that.

Hi.
Take more melatonin and see if it helps?
It's an OTC drug so you won't be concerned. As I know up to 5mg is ok. I'm taking it for almost a year, most of the time 3mg per night, but a month I switched to 5mg then cut back to 3. It's safe on the long run and I haven't decided to cut it.
By the way, surprisingly, this drug also increases platelet production!

Lman wrote regarding Melatonin By the way, surprisingly, this drug also increases platelet production!
Can we have a current evidence base for that comment please?

Ironically, after writing this, I faced two nights of insomnia, and melatonin didn't help. LOL. Maybe the occasional side effect of Nplate mixed with exam stress?
Here is the evidence:
pubmed.ncbi.nlm.nih.gov/12424512/
journals.lww.com/americantherapeutics/Abstract/2003/03000/Severe_Bleeding_Symptoms_in_Refractory_Idiopathic.10.aspx
ashpublications.org/blood/article/112/11/1241/59268/The-Effect-and-Underlying-Mechanism-of-Melatonin

But to be honest, it has some negative effects on blood factors included in clotting, like factor VIII if I'm not mistaking. You can google this yourself. I'm not sure about the exact blood factors effected.
I have been on it for about a year, I think I'm going to discontinue it and see what happens to my platelets.

Sorry Lman but that is not what I would call either current or proven evidence .
Link 1:- 18 years old , following 3 patients ending with "Our experience suggests that melatonin may be safe and effective in patients with refractory ITP."
Link 2:- 17 years old, involving 1 patient only
Link 3:- 12 years old, an abstract that has never been updated involving a murine mode terminating in "The underlying mechanisms may be involved in directly stimulating megakaryocytopoiesis "

Yea , I know I should stay away from phone , I keep looking at the time , getting even more anxious as to what would happen to my platelets without sleep.. I addition work things are always running in the background you know..

Thank you lman , I heard someone else suggest same that melatonin has positive effect on platelets, but haven't gone for blood count because of covid - So donno where I am at right now ..I do have acid reflux issues also for the past 2 months and I have to figure out if my insomnia is related to that . none of the ppis helped me so I discontinued everything and not taking any medicine now .

The fact that these articles are "n years old" does not mean they are wrong. What percentage of medical science has been produced after those years?
This question has not been extensively addressed in medical science. I needed something to sleep and I just checked the internet whether it's safe or not? And it was for me. I'm not advertising melatonin, to be honest. It's up to the reader whether he or she feels that he can draw any conclusion or not.
In order to show me I'm wrong, you need to provide evidence that melatonin inhibits platelet production.
Nevertheless, I found more evidence, one is for 2014 and one for 2018:
www.oncm.org/v03p0037.htm
ashpublications.org/blood/article/124/21/4201/92096/Melatonin-Protects-Against-Apoptosis-of

But as I said, it also has a negative effect on clotting:
www.mayoclinic.org/drugs-supplements-melatonin/art-20363071
I think people with very low counts should avoid it.

Lman
This is what I mean by evidence practice & not articles found on the internet containing hypotheses or conjectural based statements

Evidence-based medicine is the integration of best research evidence with clinical expertise and patient values. Evidence-based medicine is an interdisciplinary approach which uses techniques from science, engineering, biostatistics and epidemiology, such as meta-analysis, decision analysis, risk-benefit analysis, and randomized controlled trials to deliver “ the right care at the right time to the right patient.” (Source : AHRQ)

Evidence-Based Medicine (EBM) aims for the ideal that healthcare professionals should make "conscientious, explicit, and judicious use of current best evidence" in their everyday practice. The practice of evidence-based medicine uses systematic reviews of the medical literature to evaluate the best evidence on specific clinical topics (evidence synthesis). The evidence is then translated into practice by medical practitioners who select treatment options for specific cases based on the best research, patient preferences and individual patient characteristics (knowledge translation). Evidence-based medicine practitioners engage in life-long learning and are committed to the continuing education of professionals and patient communities .(www.hopkinsmedicine.org/gim/research/method/ebm.html)

The link below defines levels of evidence.
guides.library.stonybrook.edu/evidence-based-medicine/levels_of_evidence

RR01
Have you been tested for H pylori?

No. I did ask my hematologist for that but she said that some other factors will be elevated ,which wasnt the case with me .

When I was first diagnosed every single test performed, and there were many believe me, came back completely normal except for my platelet count.
I was sent for H pylori screening because I complained of reflux. I queried why as my white cell count and CRP were normal. My consultant told me just because my results were normal didn't rule out me having it, and as a well known cause of ITP it needed either ruling out or treating if I did have it.
I didn't have it but at least I was tested for it.

The detection of H pylori infection with the urea breath test or the stool antigen test should be considered in adults with typical ITP, in those with digestive symptoms is stated in the 2019 ASH guidelines see ashpublications.org/bloodadvances/article/3/22/3780/428877/Updated-international-consensus-report-on-the (I know the link looks short but it works).

Mrsb.
What you say is quite right. What I say is that it's quite costly for the world to investigate all possible scenarios as extensively as you said. Say, there are 10000 diseases in the world and 1000000 compounds in the world, which melatonin is one of them.
How would you expect that all 10000*1000000=10^10 combinations be tested using EBM methods? When there is enough financial support, they might be feasible, but not otherwise.
And here, medical science returns to its old habit: observe and conclude!

Investigations to find a cause are needed if someone is displaying symptoms. It maybe the cause that needs treating and not the IPT secondary to the cause.
Testing for h pylori is extremely cheap as is treating it. Compared to the cost of some ITP medications is would be a drop in the ocean.
If for instance I had tested positive the process from testing through to treatment and re testing post treatment (based on current prices) would have cost the NHS £62.45. By comparison 28 Eltrombopag 25mg tablets costs £770. The true cost will be cheaper due to the patient access scheme but those discounts are kept well out of the public domain.