Currently in hospital.. came with severe headaches. And confirmed virus after LP
This morning they’ve said they need to rule out which virus it is. Although yesterday I was told VM- slightly confused about herpes and meningitis etc? Can it cause it ? And if so where do I go from here
I’m struggling with headache and it’s worse when I stand
Also I don’t want to eat? Are these things normal
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Jadahughes
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Yes unfortunately it’s normal to feel insanely horrible and even be lucky to be able to type or communicate clearly at this stage. It depends on the type of virus and your body. It’s a long road. Hang in there. You aren’t alone. It’s scary but you’ll be like the rest of us recovering bit by bit.
Thank you for your reply. It’s nice to have some reassurance. I still haven’t eaten. I struggle to get up and walk much, my head seems to hurt more when i move around . I hope o feel better after a week of the iv. This is terrible pain.
Glad you are in the hospital so they can help you manage your pain. It can be so debilitating. They just mean that while they have you in the hospital they can use the fluid from the LP to test it to see if they can figure out which virus caused you Viral Meningitis. An original virus caused the VM. There a few normal culprits, one being the Herpes virus. Others are Lymes, coxsackie or enterovirus. Just let them run tests on it and enjoy the meds. You will start to feel better. The first few days are the worst. Some people have lingering effects but some people don't. If you do then please turn here so you can get feedback from others. The doctors don't always understand the lingering effects down the road. But hoping you feel better and don't have those! Good luck!
Thank you 😊 it’s lovely to have someone to turn to. So for instance if it was caused by herpes what happens next. Do I have to take anti virals for the of my life ? Will this happen again? It’s all so very scary isn’t it. My head is really bad each morning and elevating makes it worse. I hope these symptoms gradually fade eventually. I am feeling a lot better this afternoon and have managed to eat some fruit. I have a holiday next month and praying I’ll be able to and enjoy it. Very worried of the aftermath and being abroad and being unwell again,
Hope to hear from you again soon. I also have a good ear for listening if you ever need a chat x
I have the recurrent (Mollarets) but herpes is not my cause. It has not been found in my spinal fluid during any of my flare ups. In fact they haven't found the cause of mine yet. I usually feel better in a few days. The one true constant is that everyone is very different so use the comments from all of us as a guide but not as a hard and fast "this will happen to me." Because it might or it really might not. I have had 6 bouts with VM but mine are usually 2 years apart. I don't take anti-virals. I decided against them. As with any medication that strong you really need to do some research and make the decision for yourself. They help some people but they don't make one bit of difference for just as many, if not more, people. I refused to take something that strong for that long (at least two years) before I would know if it would do anything.
Sorry I can't offer you more concrete advice but it is a weird disease that is very unique. Talk to your doctors and do A LOT of reading/research when you feel up to it. You have to be your own advocate. Hopefully you will be a one and one and back on your feet enjoying that holiday!
Yes it is normal. Make sure they keep the room dark and quiet. Hopefully they put you in a private room as they did with me. Stay in bed and take a pain medication when needed. I was in the hospital for 4 weeks, hopefully this will not apply to you. When they take you for test put a sleep mask or towel over your eyes.
If the VM is caused by HSV2, antiviral may or may not help...that's what my infectious disease doctor told me. I've had 5 flares of VM (condition called Mollaret's meningitis or MM) in 7 years that have required hospitalization.
I found no difference in my symptoms while taking the antiviral for two years, but maybe it will work for you.
My neurologist admitted not much is known about MM as far as long term effects or relief and used the phrase "uncharted territory".
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