Advice I have been given for viral meningitis

[Bonkitty]

Dear VM friends, I have posted many times on here and many of you will know I had VM 15 months ago now and I have suffered severe headaches / head pain/ migraines ( they have been called many things by doctors ) during this time. The crushing pain actually dislocated a vertebrae in my neck, collapsing my mid and lumbar spine. So I have been in so much pain for the entire 15 months. I have insisted in seeing several doctors: neurologists, pain clinic and I have been admitted twice to Accident and Emergency. I have also done my own research and the following is the best of the advice I have been given. Be aware that not everything suits everyone.

*Amitriptyline ..the professor of neurology said to take the highes dose tolerable that can be prescribed . I take mine early evening so it wears off before morning.

*Topirimate... Again the highest dose tolerable that can be prescribed.

* Never take general analgesia eg Paracetamaol, Ibriprofen, Codein Phosphate, Co Codamol as they make the headaches worse.

* supplements... A good diet of viatamins and minerals , I also supplement these plus I take a fish oil.

* I take virgin coconut oil as it is supposed to be good for the brain and membranes. And I drink coconut oil.

* I drink juice that I make from spinach, kale, cucumber, apple or pear, fresh ginger and lemon juice. I swear by these. My hair, skin and nails are great.

* most importantly I have changed my diet I have cut out gluten (very hard to begin with) and dairy. I do have milk on cereal and in tea for my bones but I have ditched yogurt and cheese. I feel so much better for this in terms of energy and digestion.

Apart from the headaches the above things have helped me to feel much better.

Recently I was prescribed Pregabalin 75mg for pain in my neck, this had terrible effects...hallucinations (I felt like I was stuck in

The 1960s on a psychedellic trip!) so the dosage was reduced to 50mg but the side effects are still horrendous so I am slowly reducing this. It really does solve the pain problem however I could not feel my arms or legs and kept falling over. Good job I have a good sense of humour.

Each doctor I have spoken to has tried to be as helpful as they could be. I believe they all would do anything they could to help me. But each one said that the brain has been inflamed and a brain injury has incurred and it will heal in time and no one can do anything to fix it. It has been explained that getting a temperature, a cold or any infection will exacerbate the inflammation and increase the headaches so looking after the immunity and avoiding infections is important.

The doctors have advised, acupuncture and cognitive behaviour therapy to help cope with the pain and change in life style.

I really hope this post helps. I have tried everything. Pestered doctors looking for answers both NHS and privately and the conclusion I have come to is accept it will take time. I was a neuro nurse so really I knew this anyway. A long time is no time at all in neuro terms. In biology a long time is needed for the brain, a very delicate organ to fix itself. I watched a tennis player at Wimbledon this week, it took him 2years to recover from VM. so we may make it to Wimbledon yet if only to eat Strawberries and drink Campagne!

Best Wishes xx

[Rah2013]

This is VERY helpful & enlightening. Thanks so much for sharing. I'm taking all comments into consideration & will be applying something from each. I'm so glad I found this site.

[Jcrome]

Great advice and pointers, thanks as always for sharing. Who was the tennis player by the way?

As you know I'm at 12 months now and although progress continues, you are spot on when you say 'A long time is no time in Neuro'!

[Bonkitty in reply to Jcrome]

Hi Joe, it is Ivo Karlovich. He had it in 2013. On the TV they said it took him 2 yrs to recover, I wonder if they meant he had it 2 years ago? Anyway he is playing again. So hope for us!. Xx

[JustinP]

Hi Bonkitty,

Wonderful timing! I'm due to see my immunologist for the first time this week and have been compiling an update to my Mollaret's blog in preparation. I've had a serious missing blank though with headache/migraine meds that work, and you've got the necessary intel Do you mind if I reference back to this blog in mine to capture the experience and insights? (The coconut oil also gets a mention, though I've still not started on the smoothies.)

I've been trying out acupuncture and CBT too to help cope with the pain and change in life style and have some great early results! Just need to see what the immunlogist says on Wed and away we go for the next chapter...

So sorry to hear of your recent set back too, though hope that with this and other feedback we can help each other (gently) push through these barriers.

And maybe I should add strawberries and cream to the next lab-rat tests! Though the physical exercise is probably the key. Slowly slowly...

Justin X

[Bonkitty]

No problem Justin. I am pleased to hear that the acupuncture mad CBT are having a good effect. I am on day 2 of no real headache. It is such a relief but I know to go slowly and not to over do it now. It is good to hear we are having some results, if only small results. I do think that cutting down on the dairy and gluten seems to be helping me feel so much better. I have so much more energy.

Catherine x

[JustinP]

Thanks Catherine. Much appreciated and here is to day 2 with no headaches, and to day 3 for tomorrow, and beyond. Finding that secret to more energy is so critical and I hope the new diet works out well for you, and that CBT, acupuncture or both can alleviate those headaches in the longer term. Odd that the energy and headache things are so closely connected. Guess that's what happens when one tries to work the noggin after such an injury.

I'm all over the amitriptyline and topirimate research, though may give the pregabalin a miss if I can. That sounds a bit too trippy for me and I thought co-codamol was 'out there'.

Thanks again for all the advice and would love to know if changes in air prssure effect your headaches.

Best for now, Justin X

[Bonkitty in reply to JustinP]

Hi Justin, yes my head is certainly affected by air pressure! Clear skies make for a better day. On a cloudy low pressure day I feel like someone is standing on my head! Need to live in a sunny place! Xx

[Claudeminh]

Dear Bonkitty, can you get botox for the chronic migraine? Its the only real thing that has stopped my chronic migraine. I am in month 5 of it and you have it every 3 months. I am almost normal. Mild migraines now or half size ones. I can exercise work and study. Still ache more than usual if I do hard exercise and I am slowly building it up. I know the migraines will return once the botox wears off, usually in the last month before the next injections are due. But that middle month or so, I can act normally. I am doing my post graduate degree and I am doing all the homework now before the migraines come back!!! Its a bit insane but I have to use the time wisely. Can you get a referrral and start on it? It has 70 percent success rate and often for really hard cases like yours and mine. Last year I had 152 days straight of solid migraine. You sound like yours might be even worse.

I just want to give you hope that something works.

I was crying a lot and feeling really hopeless about it all. But this has given me hope and I know other people the same. I also had severe viral meningitis and was off work for a year and in hospital for 9 days first time and 15 days the next time with the migraines. So, it all seemed fucked and useless, but things have improved.

Oh yeah, i saw what your Dr said about the ampitryptiline and I have to agree that its very useful for neuropathic pain which is why you are aching all the time. And similiar for the migraines. I have to say it didnt help much for the migraines, they were just pushing through, but I had lots of joint and muscle pain for no good reason as well as weird nerve pain that run up and down my body like the flue but more nervy and it would wake me up at night all the time. Gone with the endep! Only if I get horribly overtired and over do it, pain will break through. i take 75 mg at night and I could happily take more but its not neccessary. It makes me sleep a lot thank GOD as thats the great healer.

Anyway, just wanted to give you hope with the botox. It has no side effects and Im telling you now, If a frontal lobotomy would cure the migraines I would have that too. Botox is easier.

How are you doing this month? Im in Australia and we get the botox for free if you qualify. How about over there?

Regards

Rowena

[Bonkitty]

Hi Rowena, thank you for your advice about the Botox and for your post in general it is good to hear from you. I am really pleased to hear that you are doing much better and getting on well with your studies. I don't know how you wake up on that dosage of amitriptyline! 30mgs knocks me out! I must be a lightweight! Lol! When I saw my Neurologist back in March, he said that if the Topirimate did not work for the migraine then he would consider Botox so that may be a possibility when I see him at the end of this month. I am having some better days mainly due to the acupuncture but now I have to battle with the fatigue and the neck pain, I have compressed nerves in my neck from where my neck dislocated due to the pain causing tension in the muscles. Something has to work soon as I have to get back to work although making a good recovery has become my priority now. Sleeping well has been the good thing about this illness, I have never slept so well, there is always an up side.

Take care and good luck with your studies.

Catherine x