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