chronic insomnia for 19 years

[CornishChick]

Hi I’m new to the sleep forum. Since a stressful event 19 years ago, I wake at 2am every morning from a deep sleep, and it takes a minimum of 3 hours to get back off. I am initially asleep within minutes as am always shattered in an evening.

I know all about sleep hygiene and have tried a protein snack at bedtime, L-tryptophan, herbal remedies, lavender, melatonin etc. The only thing that works is a first generation antihistamine, but I don’t want to take that for life. When I tried to reduce it, apart from not sleeping, I developed a terrible itching over my body.

I have done blood and saliva tests which showed my cortisol was low. I read that low cortisol can release adrenaline at 2am. However, my latest pre 9am cortisol blood test was just over range. This could’ve been a glitch due to stress, I don’t know.

Does anyone else have this and been able to get shot of it? My GP is super helpful, but there are no NHS sleep clinics where I live. I would be prepared to pay, but don’t know where to go for help.

Any advice much appreciated, thank you.

[Imaaan]

Hi there,

Im not familiar with antihistamines . Are they similar to h2 blockers ? H2 blockers help with reflux and there is a strong link between reflux and sleep apnea. I have both. How is your gut health.

I have hypothyroidism and have struggled with adrenal fatigue for many yrs and would wake up around the hours 2-4am . I found taking ashwagandha at lunch and valerian plus magnesium to be helpful

Also, I've found combining beef thymus, beef kidney and black seed oil to be helpful for histamine.

[CornishChick in reply to Imaaan]

Thank you, I think they’re more for allergies but the first generation ones make you drowsy.

I do have hypothyroidism and adrenal fatigue too. I take magnesium daily. Ashwaganda is an adaptogen and has to be used with caution to raise or lower cortisol. I’m not sure what’s happening with my cortisol so wouldn’t feel like taking it at present, but thanks for the thought.

The beef stuff sounds interesting, where do you get it from? Has it cured your insomnia? I don’t have sleep apnea, I don’t know what I have, but would love to know so I can fix it.

[Imaaan in reply to CornishChick]

There are a few brands I've tried. Ancestral Thymus and Liver, Ancestral Beef organs which contains kidney . Nutricology Thymus and Allergy Research Group kidney

My favorite by far is taking the Ancestral beef organs at lunch, Nutricology Thymus and blackseed oil. Then at supper combining the nutricology thymus, allergy research group kidney and black seed oil at supper.

I liked the Ancestral thymus and liver but found that it gave me too much energy at night when I took it at supper because of the b12 in the liver. So I switched to Nutricology and that was a Godsend

[Boble]

You alright    CornishChick

I have no knowledge of self administering alternative meds or allergy prevention. So cannot advice on that I fear. Recently I have found the videos of Barbara O Neill however very pleasant to watch in many facets of understanding as to how the human body works. Reading your post makes me think that taking Magnesium daily alone might leave out other needs of your body/cells uncovered in order to function properly. Perhaps you find the answers you seek in her approach. 🙂

I am also new to this forum and suffer from sleep apnea for 2 years or so, have low thyroid function and other issues. I am under treatment of the Sleep Studies Department connected to Wonford Hospital in Exeter. It's a lengthy slow process but after an initial contact in which they ascertain (via questionaire) your sleep patterns and discuss the best way of your treatment.

A leap into that direction might be beneficial in your situation?

I would like to suggest that your GP refers you to Sleep Studies where Plymouth or Exeter might be the closest by to you. I do know of a transport scheme in several cases where it is advisable you not driving yourself when drowsy or fatiqeud. It takes me an hour plus to get to Exeter from where I live. Luckily since Covid, follow up appointments go via face time or phone once they start monitoring your progress. The Cpap is operated remotely via internal modem.

I live in North Devon and follow your journey as I believe we have simularities in the path we walk. I just like to tag along for a bit. I have hyperpertuitarism among many other things. =)

I have been given a Cpap machine to help me breath better due to sleep apnea (which you say you don't have) I gained weight due to taking steroids and have an enlarged collar size and blocked sinus most nights. It has become a ritual every night.

I am a mouth breather when I sleep, while my sleeps used to be peaceful and upto 8 hours in the past. I am happy to get 6 hours uninterrupted per night. More often I wake several times per night and leave me buggered in the morning.

To begin with I did not get on with my Cpap as the full facemask gave me panic attacks once ramping up (choke-reflex). It also woke my partner up which didn't help her.

I hope you find relief soon!!

[CornishChick in reply to Boble]

thank you. I don’t just take magnesium, I do take other supplements I need, I just mentioned magnesium as that is associated with sleep.

I will have a look at Barbara’s videos thank you.

My GP said cornwall has no funding for sleep studies, may I ask how you get onto that programme or can you post a link please? I’d happily drive to Plymouth or Exeter, I’d even pay, I just need to find someone who can treat insomnia that is not related to mental health issues.

From what I’ve read, I would get help if I had sleep apnea, but I don’t, so unfortunately the nhs can’t help me. It’s a sorry state really when you need sleep to prevent chronic illness.

[Knitting20projects]

I don’t mean to pry, but have you had therapy for the stressful event? I’m assuming you don’t have PTSD etc that needs treatment?

[CornishChick in reply to Knitting20projects]

thank you, tbh it wasn’t that bad looking back, just a break up, but at the time seemed awful. Now very happily married and definitely don’t give the event a second thought now.

[Boble in reply to CornishChick]

Okay.. I got referred via my Endo. Referral via GP/Referral Service to a sleep clinic is only granted on the basis of certain symptoms to be fair. Personally I would like to 'exhaust' that avenue if you are suffering poor sleep or fatique still.

Beside that, give PALS (Patient Advice and Liaison Service) a call for advice. I had daily head aches for a year before I found that they could be remedied. The headaches went after my Endo adjusted my steroids dose and now I have a headache only sporadicly. I am aware headaches can come with poor or shortened sleep. I haven't been able to properly use my Cpap to it's full potential, due to blocked sinusses. We live in an old dusty house.

Out of interest, do you take caffeine/energy/herbal drinks to stay active during the day? These might take longer to get out of your system if taken 4 - 6 hours before bed time.

On a different note I wondered if you use(d) alcohol or sleep tablets as a sedative? What are the other supplements you didn't mention?

It sounds to me something doesn't add up. Perhaps something you take goes against the grain. Could you elaborate please?

When underactive thyroid, Cortisol levels are lowest end of day and highest early morning after waking. They deplete gradually over time as our energy during the day.

I thought it general knowledge that we all wake several times a night from deep/rem sleep. It is a natural proces of breaking the sleep cycle in the body for different purposes. This is absolutely normal. Our bodies cleanse & recover during rest. The following picture might clarify this somewhat better.

nirvananaturopathics.com/bl...

Good Luck!

[CornishChick in reply to Boble]

Hi sorry I’ve only just seen this.

I have one caffinated drink first thing. My cortisol is very low in a morning and I think I struggle to wake up without it, despite being an early bird.

I don’t use sleep tablets as such, but take antihistamine and amitriptyline to help me sleep. Other supplements are to support my thyroid and adrenals, so vitamin C, D, K, selenium, magnesium. I drink alcohol on a weekend but it doesnt make any difference to my sleep, good or bad.

[Knitting20projects]

Only other thought = there might be some online CBT-I (cognitive behavioral therapy-insomnia) programs you could look into. I don’t know for sure. But maybe worth googling. They’re obviously not medication. But CBT-I, while not immediately a fix, is apparently an effective long term treatment. Of course you should still get a medical evaluation eg screening questions for sleep apnea, etc. But it might be something you could start online while awaiting your specialist appointment. I’m in the US so can’t comment on NHS/private UK clinics. I hope you find some relief soon.

[CornishChick in reply to Knitting20projects]

Thank you. The GP referred me for CBT. The first t/con the therapist asked things relating to whether I have anxiety or depression. I don’t have either. She said she can’t help me then. Plus said mine is not a mental issue, so no amount of counselling or sleep hygiene will work. I am glad she said that as I’ve known that for years, it’s just finding someone that can help me.

[Knitting20projects]

Gotcha. That makes sense. I hope you can get into a clinic soon! Having had sleep issues myself, it’s so hard & affects everything else in life. Hugs to you.

[Nothing_but_books]

Okay, this might be a stupid question, but did you try time-release melatonin? The time-release part stops me from waking over and over.

[CornishChick in reply to Nothing_but_books]

sorry I’ve only just seen this. Yes when normal melatonin didn’t work, I bought the time release thinking that must work, but sadly no it didn’t. My GP concluded that I don’t have a diurnal sleep disorder, otherwise melatonin would’ve worked.

[Foxglove4912]

Wow. So I'm not alone. Like you am expert in sleep hygiene and all the rest. And I have been taking a first generation histamine for years. I don't want to but it's the only thing that half works. And not necessarily all the time. My GP is totally unsympathetic though. My diet is fine ( I've seen a dietician.) but I'd give anything to be drug free and have a half decent night's sleep. It's been over 20 years.....

[CornishChick in reply to Foxglove4912]

I’m so sorry to hear you suffer too. I am also around 20 years suffering. My GP cares, but there’s nothing they can do in the NHS without the right postcode. If you’re in the right area, you qualify for help. I’d be happy to pay at this point, but have no idea who could actually help. Specialist councillors have been mentioned, but I’m sure mine is not in my head. I feel like I’m injected with adrenaline at 2am. If my body is responsible for doing that, there’s no way thinking differently will change it. What about you? Feel free to PM me, appreciate this conversation is boring for those who don’t suffer!