Symptoms seem worse 3 months post herpes viral meningitis than they were a month ago. Is this common?

[Amrita-A]

Hi to my friends here. I hope you are all getting better and enjoying life.

As I said in my title, I have now passed the 3 month mark. About 3 weeks ago, I stopped having what one poster so aptly called the "series of false dawns" where you have moments where you feel almost normal, followed by feeling so dreadful you have to go lie down.

I have certainly pushed myself, and 3 weeks ago, the false dawns stopped. I have felt dreadful since. You all know the exhaustion and my brain seems to be working at half function. I still cannot follow complex thinking, execute a recipe, and reading and typing are very difficult. If only you would see the errors I make before spell check alerts me!

Have others experienced this? What happens after? Is this the best I can expect? There is no way I would be able to hold down a job (I have been looking for employment since before the meningitis). I am a very physically active person and I am looking after a house on my own, but I can't do the physical activity I once loved, or socialize without paying a heavy price.

I am an amateur musician and playing my instruments not only exhausts me, but I will be playing and suddenly have no clue what the notes are, what fingers play them and my hands will sometimes do something entirely of their own accord.

I have a numbing fatigue. Sometimes I can't sleep at night, in spite of it.

I swear the brain damage is getting worse, instead of better. Is that possible? Does the herpes virus continue to cause damage after the initial illness?

I have not gone to my doctor, who is an hour away. I don't believe she has the experience to help me and when I asked for a referral to a neurologist, she said I am fine neurologically. She should see me type! Lol.

I now get car sick. Even driving myself. I have a lot of lingering nausea and headaches. It somehow feels like I have become "stuck" in illness and am not improving?

Anyone? Have you experienced this? Does it get better? I feel so fragile in every way. My body, my existence feels very fragile.

Thanks for listening. xo

Any sharing of experiences would be most helpful.

[Portage]

Hi.

I keep repeating myself in responses but that’s ok.

I was never diagnosed but am sure I had meningitis in 1964.

All I can offer are suggestions.

Find a Lyme literate doctor-they kinda listen.

Get checked for MTHFR. If necessary change vitamins and diet if you have it.

I use to live on Benadryl and actually felt better at times. I take aspirin for the pain/inflammation.

The older I get I find I have adverse reactions to medication - keep a journal so you don’t repeat meds that make u feel worse.

Many antibiotics for Lyme help.

I haven’t found a meningitis literate doctor-

I just wish they’d listen and learn from me.

If I were you, I’d try and live with or near family-

Hang tough-lotsa challenges. 😃

[Amrita-A in reply to Portage]

Thank you for your reply. I was given way too much Benadryl via IV along with tons of other drugs when I was in the hospital. They sent me home dangerously stoned!

I will check in to your other suggestions.

I don't even tell my family because as it is, my friends don't believe me and my family doesn't seem to care. Friends think it is depression/anxiety and something else emotional, which I forget. It's not. I didn't feel like this before.

Best,

Amrita

[MKlaeger]

After 10 months of feeling similar- I was recovering until about 5 months into my recovery- I finally saw a neuro. He believes I was misdiagnosed with viral meningitis based on the results from my spinal tap. He also believes that someone with viral meningitis should recover like the average doctor tells us we will - quickly and fully. I am now going through a series of tests to identify the underlying cause of my symptoms. So I have no answers, but please don’t wait as long as I did to take control of my health. It doesn’t go away on its own so do whatever you can to get in with a good neuro!!

[Amrita-A in reply to MKlaeger]

Hello and thank you for your reply.

I hope the neuro is able to help you. Do you think you had viral meningitis? Does he think it was a different form or not meningitis at all? Did you push yourself, as I did, during your first 5 months? I often don't have a choice.

Can you please keep me updated?

Wishing you all the best.

Amrita

[MKlaeger in reply to Amrita-A]

I will, I go back to the neuro next Friday. I did push myself at work (I am a lawyer) and physically with yoga and walking. I felt like I was doing better and then just got way worse, almost over night. I hope you get some help and relief soon!

[Amrita-A in reply to MKlaeger]

I hope you do, too. I know the exact day when I stopped having any "normal" moments. I haven't had one since. Good luck.

[Amrita-A in reply to MKlaeger]

Let us know how your appointment with your neurologists goes.

[MKlaeger in reply to Amrita-A]

Hey, turns out I have a seizure disorder that is causing all of my symptoms. I am still trying to process the information and understand exactly what it all means, but essentially in the right front temporal lobe I just have constant seizures which is changing the way my cells are functioning... he said to focus on getting better sleep and is putting me on a low dose seizure medication. There are no visible signs of a seizure, so I was quite surprised by the diagnosis but am very hopeful that this will solve all my issues. He is still unsure if I ever had meningitis, but thinks that whatever I had in November worsened the seizure disorder, which explains why I never noticed the issues before but now they are impacting every aspect of my life. I hope that you are beginning to feel better. Have you heard about the spoon theory? I learned about it a few weeks ago and it has made my life so much easier. I shared the blog post with close family and friends, now they are much more able to understand what I am going through and no longer have the same expectations of me that they did before I was sick. Since their expectations have been managed, I feel less tension in the relationships and so I also no longer feel as lonely. It has helped me too, no longer do I feel guilty when I can't do something, I just acknowledge that I have fewer spoons today. Or maybe I feel okay today but know that I will need to use more spoons tomorrow, so I rest today in hopes of feeling better tomorrow. I also prioritize how I want to spend my spoons. Maybe today I will walk and so also schedule time for a long nap.

butyoudontlooksick.com/arti...

The other thing I have done is force myself to walk several days a week, I may only go for 10 minutes, but it has been really helpful. I think I got into my head so much that I let the despair and frustration get too much power over my health. This is certainly not to say that it is all in our heads, it is absolutely real. I second keeping a journal to track your symptoms and would ask your doctor again for a neuro referral. Lastly, I think I started feeling better earlier in my recovery because I was so kind to myself. I didn't get mad if I could not do something, I just let myself rest. The further into my recovery, the more pressure I put on myself to be normal again, in the last few weeks, I can tell that I am feeling better because I am being kind to myself again. I am trying to stop putting artificial expectations of what I should be doing at this point. It has helped because instead of beating myself up emotionally/mentally for all the things I did not do today, I am grateful for what I did do, even if all I did was lay in bed and read or watch tv.

This is more than you asked for, but the last few weeks have been an emotional roller coaster for me as I prepared for my neuro appointment, fully convinced that I had MS (that was what the neuro thought I had initially and why he ordered certain tests). So when I no longer expected that I would ever get better, I started trying to accept my life with the illness. I don't know if this helps at all :/

[VMroom in reply to MKlaeger]

Oh my goodness The Spoon Theory is how I've been feeling! Trying to explain how everything requires thought processing & energy I currently don't have the capacity for. The incestant need to explain yourself because there is nothing visibly wrong. Thank you so much for sharing this.

I do believe we push ourselves too hard because that is what we are accustomed to do and often have to do to in order to live and work depending on our situation.

My aunt was faced with debilitating MS but continued to walk her dog daily. Her symptoms have continued to be very mild for 30 years.

I do hope you are now on the path to discovering the truth about your condition. All the best.

[MKlaeger in reply to VMroom]

The spoon theory was definitely a game changer for me! I am glad it helped Thank you for the kind words and I hope you continue to get stronger!

[Amrita-A in reply to MKlaeger]

Hi Thank you for letting us know what is happening. That certainly must be a shock, considering you aren't aware of seizuring. It must also be a relief.

I had never heard of the spoon theory before. I'll have to remember that.

I'm sorry it has taken so long for me to reply and that my reply is scarcely what I'd like to say, but my brain issue is really bad and typing and comprehension are getting worse.

I will reply when my brain comes back.

Good luck and do whatever you need to do to feel good. xo

[forbessr]

You will get better..just do not stress your body...eat as well as you can drink plenty of water, walk when you can and rest..rest..sleep..sleep as much as you can...you will get better..but it will take time.

[Amrita-A in reply to forbessr]

Thank you for your reply. I would love to sleep and rest much more, it's just difficult to make it happen.

Take care,

Amrita

[forbessr]

Are you taking vitamins? I had severe head issues as well ..took me near 8 months to recover, but I started taking magnesium , zinc and vit b6 and b12 and drinking graviola tea and things started getting better..slowly

[Amrita-A]

Yes, I have been taking all the vitamins and minerals you listed for many years. It has only been 3 months for me, so perhaps I need to treat myself a lot nicer and be patient.

[forbessr]

Yes it has been nine months for myself and still have issues but everything is starting to get better..you just need to eat well , rest as much as possible and do not lift anything heavy..I made the mistake of lifting things and it has taken months for my arms to get better...I now drink graviola tea for my neck and neem when I feel I need it

[Amrita-A in reply to forbessr]

Thank you. I am definitely getting weaker and weaker in spite of being physically active. I don't get enough rest or sleep and that is probably my biggest contributing factor.

I had my vision checked today and I now legally need glasses to drive. I did wear glasses prior to getting meningitis (not legally required), but my vision has worsened although she said my optic nerve is ok now, which was good news.

[forbessr]

Yes I had a similar experience. I was on steroids for 14wks due to the meningitis interfering with the optic nerve...thought I was going to lose my eyesight..the experience scarred the eye and I have also had to get a stronger prescription...yes you will get weaker and you have to walk and drink plenty of water..no stairs, no lifting until your brain heals...just do not rush anything...take time off work and turn off the tv and just rest.

[Amrita-A in reply to forbessr]

I had a three hour eye appointment yesterday. I do have glasses, but I got a phone call saying that they are required by law to inform the ministry that my vision is now bad enough that I legally need glasses for driving. She said my optic nerve looks healthy but obviously damage was done as I was not required legally to wear glasses to drive. I can tell that my vision did not return to the same degree it was before I got sick.

I'm actually getting pretty scared because I feel weaker by the day. I don't know what is going on. I don't even know what kind of doctor to go to. I asked my gp for a referral to a neurologist the week after I was in the hospital. She would not give it to me, even though she admitted that she has never seen me this sick. I cannot believe the degree of total exhaustion, brain dysfunction and fragility. I hope you feel a lot better than I do.

[forbessr]

You will get better..I felt like it was not getting better 3 to 6 months after as well...I just told myself to keep walking taking magnesium and anti virals and drank plenty of water...you will get better! Rest as much as possible as you have had a major attack on your system...no doctors are going to be able to help you as no one knows what you are going through. My doctors thought I was crazy. I found graviola tea for the neck pain and neem was stronger than the antiviral but if you have antiviral make sure you are taking a good dose. I started to feel better at about 7 months and recovery is very slow so best to keep a journal so that you. Can see changes...hopefully you have a good partner that will understand what you are going through. Total exhaustion is typical at your stage...the only thing to do is sleep,sleep,sleep...I had ice packs on the back of my head and lower back for 2 months straight and could not do anything other than be in pain.you just have to put everything aside and concentrate on you! Work will always be there afterwards...rest , eat well, walk and drink plenty of water..stay away from sugar,coffee,junk food...plenty of veggies and fruit and you will get better! And yes you are going to lose weight...I lost 60 pounds in 8 months...no diet..just eating healthy and walking and water and today almost feel normal again and am at 9 months post vm

[Amrita-A in reply to forbessr]

Hi,

It is encouraging that you feel close to normal. I'm glad to hear it.

How do you take the neem? Where do you get it?

Hope today was a good day! xo

[forbessr]

Yes everyday I am getting better..and you will too..I get my neem in pill form from 2 sources..amazon sell it called “organic India neem” in vegetable capsils which seems to be the best but takes a while to ship it..so when I am out I get it at natures path but local nutrition store will have it. Also I use the neem oil on any outbreak areas and my lymph nodes once a week..I doubled the magnesium and started taking lysine but not really sure if the lysine is doing anything..if you go to honeycomb herpes site you can search neem and it will give you allot of help..or search meningitis and you will get help. Keep walking and drink plenty of water..hope this helps

[forbessr]

Do you have neck pains? If so are you taking graviola tea? If not get on this..it helped me tremendously

[Amrita-A]

How long did you take it for? I had read about it and it seems there are some concerns.

I have headaches and spinal pain/pressure triggered by bending over. The spinal pain is weird. It is like an uncomfortable fullness and I feel it behind my throat and chest when I bend over and in my back when i am upright. Has anyone else experienced that? I definitely did not have it prior to getting sick. I have the headaches daily still and i cannot tolerate caffeine.

[forbessr]

I tried everything else and nothing worked...the concern you have is based off a study of people drinking this for many many years....I drank this straight for approx 2 months ..the neck pain went away within a few weeks...but I still get neck pain now about twice a week and then have a cup of tea ....I definitely had the same reservations as well when someone told me about this, but once I started drinking this, it was like I got my life back....remember you have to treat the symptom not the disease... this is the most important thing to remember with vm...I had to learn this the hard way as I knew nothing about vm 9 months ago and really suffered without antiviral access due to doctors not knowing anything about vm. If you need more info you will have to go on the other web site as there are people who can direct you to special fb groups that have all the info you need.

[forbessr in reply to forbessr]

Stay away from caffeine until you get better! You have to change your diet otherwise you are going to have issues for a lot longer! I was eating out all the time and eating chocolate and I have not been to a fast food restaurant in nine months, feel almost better than I did before vm and am healthier than I have been in 25 years...no coffeee, no sugar, water and tea if you have to have sugar use natural honey...plenty of fruit and veggies, fish, lean meat..