Drug treatment for VM

[Vmstein]

I was dx with vm on March 14th of this year - so it’s almost exactly 7 months. The exhaustion is unbearable. My memory is still worthless, my eye sight is not good and I still get some visual and auditory hallucinations.

My question is this: my neuro put me on a drug called Amantadine, which is apparently often used in MS patients to combat fatigue. So far I think the only thing it’s doing is making it harder for me to sleep. Dr said if this doesn’t work he wants to put me on Ritalin which I am just really not down with.

What drug therapies have y’all tried, and which were most successful, if any. Something- anything!- has got to help me bc I can’t take care of myself much less the house and the kids and the husband. I haven’t driven since March, and basically my only contribution to the family is that I do still cook - but that was even cut off for several months bc I almost burned the house down w a grease fire bc I just was NOT thinking.

HELP?

[kalirachi]

Unfortunately the stark truth is that there are no magic fixes for an acquired brain injury following meningitis. The medical profession and the drug companies have not as yet come up with anything that is actually effective. Time and patience is the only answer together with boosting your immune system with a healthy diet and plenty of rest, this last point cannot be overemphasized. In time things generally improve but coping with the frustration and the 'locked in' feeling of being unable to do what you were capable of previously is of course immensely difficult to accept.

As Jonad (Jonathan) has stated many times on this site, the medical profession is in complete denial about the after effects of meningitis and prescribing drugs which they hope might improve things is the height of irresponsibility. Certain drugs and medication can be useful in alleviating some of the symptoms but as far as providing an instant 'cure' this is pure fantasy.

[Jonad724 in reply to kalirachi]

I couldn't have put it better myself. Time and rest are really the only remedies for post VM recovery. There is light at the end of the tunnel although you may have to adapt what 'normal' means. Things you could have normally done before may now become things which are unusual or you find more difficult.

As Kalirachi said, according to doctors, my GP included, VM recovery takes 2-3 weeks and I was even told I was better when I patently was not. I was discharged from hospital the day after almost dying from VM because 'viral meningitis is not serious'. That I was rushed back in three days later with no discernible blood pressure, GCI of 5 and heart rate dropping through 27 didn't seem to change their mind, they sent me home again 12 hours later. I was off work for just under 6 months and had to learn to walk and talk again.

Even if you don't fully recover from VM it doesn't have to be life limiting. I have completed several triathlons including three half ironman and the Long Course Weekend in Wales (which is renowned for being one of the toughest three day events in the world).

It's up to you whether you take the drugs prescribed but from personal experience the prescription is usually based on something other than recovering from VM because doctors simply don't believe it can be that. They are taught in training that VM is never more serious than flu and they don't like having their professional opinion and knowledge challenged.

The only things that helped me in the short term were lysine (for the headache) and co-enzyme Q10 for energy levels but the best thing you can do is rest, rest and rest some more. When you have done resting then rest some more.

[csolan]

My husband was dx in June with VM. In August he started on amitryptiline to manage the ever present headache. It helped a lot! He was also prescribed provigil to help clear the fogginess in his brain so he could perform at his work (which was entirely at home at that point due to the fatigue of VM). Provigil is used for narcolepsy and its indicated for shift workers. It's intended to improve brain focus thought it's not a stimulant (like coffee). It doesn't help lift the fatigue but it did help him perform better at work. Some days he takes two provigil (am and afternoon) if he has meetings in the afternoon. There is another similar drug called nuvigil. Provigil is not approved by insurance since he's not a narcoleptic or a shift worker, so its expensive. $750. But our good doctor gave us a the Good RX prescription discount card and we are able to pay $80 cash to get a month supply. I would have paid the 750, not that we could really afford it but because we were so desperate for some relief. I'm happy to report the provigil helps a lot. The amitryptline and provigil helped to turn the corner to maintain employment. But the recovery process is a long one, there's no way around that. This virus is a marathon times four. It's been 4 months and he works from home most of the time. This week is the first time he's going into the office 3 days in a row. Hope the info about drugs helps in some small way. Hang in there, take your time, slow waaaaay down, and pace yourself.