Post viral meningitis Insomnia.....anyone solved this?

[irene123]

Hi. Aged 58, 2 years ago, in 2017 I contracted viral meningitis. The lab made a mistake and I was treated initially as if it was bacterial. So I guess the gut bacteria were wiped out. It may be relevant as they have all sorts of actions on our bodies.

I am unable to work still due to chronic severe insomnia . I often have up to 5 days and nights without sleep.This causes confusion, loss of coordination , short term memory loss, general fatigue, and each of their implications.

I have no access to a neurologist or endocrinologist due to our overburdened health system here in Taranaki,New Zealand. So I'm having to sort myself out.I have spent thousands of my retirement savings on meds and treatments, both conventional and alternative but nothing has worked long term. They sometimes work but for one night only. One test I paid for was melatonin[sleep hormone] and cortisol[stress hormone] and interestingly I was found to have very low melatonin, and hugely high cortisol. They both work to worsen the other. I'm now working on supporting my adrenals [herbs, vitamin,and mineral supplementation] which produce the cortisol, to normalise their behaviour. Supposedly , this should eventually get the pineal gland [produces melatonin] to work properly. I'm surmising that these glands were affected by the meningitis in some way, maybe through the elevated temps, or liberation of poisons through my weight loss [10 kgs over the month following]. My Dr has put me [as per my request] onto 9 mgs/nightly of melatonin. Initially I got one 13 hour sleep [I was ecstatic!] but went down to 8 hours the next night,then constantly lowered until I was back down to very little sleep again. I have no idea of what is going on here! I have just sent another saliva sample away for testing to see if the melatonin is actually being absorbed into my body...... and if I'm lowering the cortisol....

A few months ago, I went to a Quantum Healer[ called Chris Fabish] who detected my lowered melatonin, and increased cortisol before I even got the test results back! He also fixed a disturbing low frequency noise which used to wake me up. The noise was externally generated as I could block it out with earmuffs. My brother,a vibrational monitoring engineer, has detected it as possibly 25 or 35 hertz, but has yet to locate it's direction/source.

So, anyone out there who's solved their sleeplessness? How did you do it?

[Barbaustralia]

Yep I have insomnia now but no cure but anti histamines help I haven't had the hormones tested but my saliva and tears ducts droppped good luck

[irene123 in reply to Barbaustralia]

What do you mean. Tear ducts and saliva dropped? Do you mean you have no tears or saliva?

[Barbaustralia in reply to irene123]

Yep I couldn't swallow and no lubricant in my eyes so needed drops

I don't understand really but yep

[Barbaustralia in reply to Barbaustralia]

I have to use mouthwash but was hospitalised as just lost ability to swallow for a few months

[Barbaustralia in reply to Barbaustralia]

Meditation can help but not when chronic

[irene123 in reply to Barbaustralia]

That must've been terrible for you. To not be able to swallow! I presume the part of the brain involving swallowing must've been affected. I'm glad it came back. They say that sometimes when certain areas of brain are knocked out, other parts take over that function. Also scientists now know that brain cells can regenerate as long as you supply the nutrition to grow them. They used to tell us during our studies in human biology [I was a lab tech] that after about 20-25 years old we had our full complement of brain cells. No more grew......so that we had better look after the ones we had! It's so good that you are progressing. Re the insomnia, ask your Dr to test your melatonin and cortisol levels and if it's appropriate to try you on melatonin. The "prolonged release" one made me feel as if I didn't sleep well, and also absolutely knackered the next day and unable to think. The straight melatonin seems to work better, and I believe the dose must be tailored for each patient.

[Barbaustralia in reply to irene123]

I have melatonin tablets but you can only get naturopathic ones here

[RHB2016]

I feel for you sister. The only way I can sleep is to take an anti-anxiety medicine.!

[irene123 in reply to RHB2016]

Thanks RHB2016. I have tried one and the label frightened me as it said not to stop taking it with out being under Drs supervision. So I guess I weaned myself off before it had a chance to work. Also, I feel the condition has purely a physical cause in my case as I have never really felt I'm an overly anxious person. And I was not like this five or more years ago.

[Jod13]

This sounds like a really difficult journey Irene123. I’m so sorry you’re going through this. Sleep is so important for healing and you sound like you’re doing all the right things. 2 years is a long time to experience this. I can’t offer any advice because you seem to be doing everything I could suggest but I thought I’d say well done for staying strong and working through it. You’re clearly taking control of your situation and having that determination will stand you in good stead for a full recovery, I’m looking forward to seeing an update. Keep us posted on your recovery....

[irene123 in reply to Jod13]

Absolutely! am chuffed to get some feedback! When I sort this out I will let the world know. I have just made a little more progress. It appears that the pineal gland possibly has been poisoned by a high mercury level. That appears to cause something called calcification and can wreck the production of melatonin, which then in turn wrecks sleep. I know I had high mercury levels as this was found in a hair sample I had tested. The mercury originally came from my fillings which I had replaced about 20 years ago due to a rare mouth condition. But the mercury was still in my bones and body. When I had the high temps during meningitis even more mercury was liberated from the weight that I lost at the time[10 kgs].

Now I have to figure out how to restart my pineal function.......I believe it's known as decalcification. Some sort of sulphur compound I believe is used.

[Jod13 in reply to irene123]

You said you’re using alternative therapies as well. Are you meditating or using yoga? It sounds all very hippy but honestly, for me that stuffs been a godsend. I’ve been using this app called relax melodies, there are a few sleep meditation in there and I use the frequently, along with my daughter. Also listening to podcasts- Blinkist is a good one because you can listen to stuff in short sharp bursts, also Ted talks.

I had no idea mercury levels could affect us so badly. It’s certainly worth investigating. Good luck on learning more about this and hopefully finding some solutions.

[irene123 in reply to Jod13]

Thanks Jod13. I have tried meditating . Also various ways of quietening the mind. Even tried something dodgy that is supposed to calm you. I've tried Binaural sound,other sounds like Tibetan Monk throat singing, thunderstorms,rain etc loops. I came to the conclusion awhile ago that this is not something psychological, but is physiological, and hence my journey. I'm naturally a quiet placid person and things don't upset me badly.[I don't generally "overthink things"] But I have to say that lack of sleep does upset me. I'm also naturally a logical problem solver and am determined to get to the bottom of this. And the net is a wonderful tool!

[Jod13 in reply to irene123]

I don’t know much about the pineal function so I can’t add any value to that discussion but it sounds like you really have tried everything. I feel for you because sleep is so fundamental to well being. Good luck with it all, I hope you find some solution soon. Keep us posted on your journey. These forums are so helpful x

[irene123 in reply to Jod13]

Thank you Jod13, for your support! I must say that I'm certainly learning on the job! And I will keep you all posted. x

[Peacock1]

Hi, I’m sorry to hear you are struggling with this. I had viral meningitis 5 years ago and was left with multiple after effects including fatigue, headaches, vertigo, nerve problems and severe insomnia. For the first couple of years or more I would manage to sleep maybe an hour a night if I was lucky. I tried everything, including melatonin, amitriptyline, meditation, supplements etc. Something may work for a couple of days but then I would be back to the insomnia.

The only thing that cured my insomnia was to change my diet completely. It was fairly healthy anyway, but I decided to follow the GAPS diet. It is very restrictive, cuts out almost all forms of carbohydrates and focuses on replenishing the gut bacteria. Your body switches from using carbohydrates for energy, to using fat, essentially putting your body into ketosis. It is very similar to the paleo diet. There is information on the diet and how to follow it on the internet or you can buy the book.

After a week or so my sleep returned and I was able to sleep for long stretches at night. I also saw large improvements in my fatigue and headaches. I followed this diet for approximately 2 years due to the benefits I felt. After a year or so I was able to have an occasional week break or so from the diet for example on a holiday, with no adverse effects, but after a couple of weeks I would notice the symptoms creeping back in.

It may be that you have already tried something similar! I can’t say that this would work for everyone but it certainly made a huge difference to me!

[IRHONDA in reply to Peacock1]

gapsaustralia.com.au/ WOW THANKS FOR SHARING ABOUT THIS GAP DIET VERY INTERESTING .

[IRHONDA in reply to Peacock1]

I have Molarets so have had 4 full blown vm, 1998 2002 2012 2014 then this feb just past I had a bout which I refused to go to hospital for and have struggled to get thru, the pain in the head was very bad , even though it wasn't full blown I have all the dam side effects still its my tiredness all the time I havnt lost the get up and go that I usually have, and being vegetarian doesn't help as my iron levels get a bit low and because I hadn't looked after myself and didn't feel I could keep cooking ect I did neglect myself and living alone doesn't help... thankyou for your information … I think we need to do a facebook site for all of us it is so good to have all of you advising everything helps thankyou x

[irene123]

Thank you so very much Peacock1! It has given me some more options. I wish you well and thank you for sharing your experience. Were you given antibiotics during your meningitis too? Because that alters the gut bacteria....

[Peacock1 in reply to irene123]

I was given antibiotics initially yes as they were treating it as bacterial until the lumbar puncture results came back, so yes I’m sure that certainly will not have helped the gut bacteria!

[irene123 in reply to Peacock1]

I believe that some of the melatonin is actually produced by the gut bacteria..... so I guess, if they're not functional, or the wrong bacteria are re-established ,then they don't produce the melatonin......I have yet to confirm which bugs are the ones that do this. Maybe a faecal bacteria test is able to do this for us....

[Curpers]

Please be careful with the melatonin pills, apparently the body can adjust to them and it might exacerbate your situation in the long run.

[irene123 in reply to Curpers]

Thank you for the caution, Curpers. Yes. I realise that but when you initially require the sleep to get everything working again I have to take the chance. Eventually I guess I can wean myself off the stuff. Alternatively, if my Pineal never works again due to being seriously damaged by the high fevers or contamination, at least with Melatonin I can function.

[IRHONDA]

wow very interesting Irene .. take care , im not far from you here in Australia <3

[Oooomeooooomy]

I am 4 months post viral meningitis, and to help my my insomnia I take full spectrum cannabis oil every night along Natural Vitality brand "Calm" it has magnesium, GABA, L-Theanine and melatonin. I do manage to get sleep using those combined. I made the mistake of drinking whiskey and diet soda about 4 days ago thinking and it might help me sleep but I STILL feel like I am hungover. Simply not worth it!!! I definitely cant drink anymore..maybe a glass of red wine here and there, but definitely not liquor and as much as I love craft beer it just gives me a headache now. I also can not smoke marijuana anymore (its legal here in California) ..I have tried twice to smoke it and am nauseous and have a migrane the rest of the day, so that is out as mechanism to relax as well. I just stick to the full spectrum edibles (THC/CBD) and my Calm combo and it works and I can wake up and function. Hope this helps. Xoxo

[Rowi]

I had horrible insomnia post-VM. I found melatonin actually made me worse. It'd put me to sleep all right, but then I'd wake up at 4:00 a.m. and stay awake. There are other ways to improve melatonin, namely lowering the lights in the evening and making sure you sleep in a completely dark room. Also, no devices after about 6:00 p.m. I found chiropractic helped quite a bit with the insomnia and also taking magnesium (citrate at first and then I switched to gycinate). And I did not go out after dark because of the street lights.

I tried valerian and California poppy (herbs) but they had a similar effect to the melatonin. I finally settled on blue vervain, but since I finally started to fall asleep on my own after doing all these other things, I only take it if I wake up in the middle of the night, which doesn't happen too much anymore.