Six Weeks

[Jergen22345]

Hi all, an update. Going on week six now. Just returned from hospital after a four day stay (my spouse) All lab work, radiology looked good with exception of VM diagnosis. Spinal fluid cultured and nothing showed up. Of course WBC in the spinal fluid. MRI shows inflammation of the meninges. Now, she was discharged, and feeling no better. Has shown no improvement. Very very tired, lethargic, absolutely no appetite, very sensitive to the touch. Now I'm hearing " I want to die". I know she doesn't really want to, it is just a way of voicing her frustration. As I said, after six weeks I was hoping to see her getting better. Anybody have a similar course of events? Relief that the herpes virus not involved. Thanks Jergen

[Caroline58]

Jergen,I felt no different but as I said......this is long haul.It really is early days in her recovery and so very hard to accept that it will take time.The feelings she is experiencing are normal and she will recover.I sat many a time crying at my GP in the surgery.I thought I would never feel well again.It is now 5 months since my diagnoses as I only now feel able to cope and function almost as before.So don't expect anything more.Talk to the help line/her doctor.

All the best...time,rest,patience,understanding from you.It is so so difficult but I found there was nothing else I could do.If she is up to it a little stroll outdoors helped me.Lifted my mood.I am 58 and never felt that low before so I understand how she feels.It won't be forever 🌹

[Jergen22345 in reply to Caroline58]

Hi Caroline, your input, along with that of others on this forum is invaluable. I can't thank you enough for taking the time to reply. It gives me a sense of relief to hear your story and that of others who have overcome this devastating disease. Tonight was a little bizarre as she threw a couple of temper tantrums which is totally our of character for her. All the best Jergen

[Mdroney]

Good morning Jergen, after 2 lumbar punctures, & one with complications, & after relapsing twice with VM, the Drs prescribed 500mg 1 once daily of Valacyclovir for me. Finally healing & feeling Gr8 . Incorporating yoga , other exercise & healthy diet. I would suggest this to your Spouses Dr. I'm a 61 yr old female, who takes no other meds. Kinda believe in natural healing , but I have made huge results with this med & it's almost a year now ! I will keep your family on my dailey prayers!!! 🙏

[Jergen22345 in reply to Mdroney]

Hi Mdroney, the Valacyclovir is a great idea. Certainly worth a try. She is not at the stage where exercise is possible. So fatigued it is a struggle for her to get out of bed to use the toilet. I try to feed her healthy food, but she is nauseous, and it is very difficult to get her to eat. She had a couple of temper tantrums tonight, which is a first. Encouraging posts by yourself and others helps immensely. All the best, Jergen

[Lheisel13]

Hi Jergen, I'm almost 7 months out and still have headaches. They are not debilitating, and I can go to work, but they are annoying. The tinnitus I developed also drives me nuts, but again, I'll live with it. When I was where your wife was, I had the exact same feelings. I remember crying one morning when my husband was leaving for work because I felt so awful. Six weeks is not long enough to even begin to feel normal. Please let her know that. I'd be happy to get in touch with her if you think someone who has gone through the same thing would be able to help. Just let me know!

Lisa

[Jergen22345 in reply to Lheisel13]

His Lisa, thanks so much for your comments. Yes, I tell her the fight has just begun, but it has been fought and won by many brave people before her, and she will prevail as well. I would love to have her talk to you, but she is too fatigued to speak, and operating a computer is out of the question. When she is better I will definitely has her get in touch with you. Iam thrilled to her of your progress. Warm regards, Jergen

[Bonkitty]

Hi Jergen, VM is a serious illness which takes time to recover from. 6 weeks is very early days. It took me 18 months to get on my feet and 2.5 years after VM I can still have migraine days and tiredness . For now your partner had to rest and let the brain inflammation settle and let her brain recover. Pushing the boundaries could make it worse as it did for me. Can I suggest the following things that helped me:

Drink green smoothies made from spinach, kale, ginger , Apple, lemon juice.

Drink a mix of Virgin coconut oil , turmeric and honey .. Very good for brain inflammation .

Keep going with the above as they will help her to feel better ,

I had acupuncture which really helped to raise my energy levels and feel better.

I had to find a level of patience I never knew I had.

So ensure she rests and rests her brain so limit stimulation for now and be aware that the brain needs to recover, the meninges need to de- inflame and she needs to recover from a hefty virus so it can only take time.

Take care xx

[Jergen22345 in reply to Bonkitty]

Hi Kitty, I'm just back from the store and purchased the items you suggested. Getting her to eat is a major problem, and hopefully she will take to the drinks you mentioned. Tonight she had a terrible bout of diarrhea, and a couple of temper tantrums, both of which are new. I will follow your recommendations, and am sure she will make a full recovery. Again, thank you and all others on this forum who have taken the time share their experiences with me. With affection, Jergen

[Jergen22345 in reply to Jergen22345]

Hi all, Jergen here. Week nine and spouse has shaken the headaches for the most part. Main complaint now is very dizzy Also I noticed she has tremors when falling asleep. Her legs are very active also. Now has a very short temper, and has frequent outbursts (all very atypical). She has become very impatient and needs things "now". Have any forum members experienced this mental side of the VM equation? Thanks Jergen

[Jergen22345]

change in personality

[Jergen22345]

Sorry, hit wrong button Change in personality. spouse still suffers from dizziness, and new symptom her personality seems to be more argumentative, as she is quick to criticize, and is very combative. Any body else experience this. Other than this and her "vertigo" she is doing much better. Approximately week ten at this point. Thanks Jergen

[Texan]

Jergen was she treated with antibiotics in the hospital? I'm 4 months out deal with vertigo and headaches (not near as bad) but still on oral antibiotics. ..

[Jergen22345]

Hi Texan, yes she was treated with antibiotics and an anti viral while spinal fluid was being tested. Results: enterovirus, nothing exotic. She is doing pretty good now eight weeks out, but main complaint is a feeling of dizziness. Neuro wants another MRI with contrast to determine if an imbalance of fluid is the cause. Will keep you informed. Thanks for the reply. Jergen

[Chicagogirl]

Hello Jergen

I am not in a position to say what your spouse's irritability stems from but I also have had bouts of bad temper which is not normal for me. I have read about personality changes with brain injury (which is what meningitis/encephalitis produces) but I also know that the frustration of not being able to do anything "normal" is terrible. I especially had anger about food. I knew I had to eat to get well but the thought of force feeding myself several times a day was overwhelming due to nausea. It was one of the worst of the after effects.

Having said that, I am almost 4 months out and my appetite returned slowly at about the 3rd month. What is palatable varies from person to person and I would say keep an open mind. ANY calories are good . Once I could eat a little I started to feel more normal and was less frustrated and angry. There is no quick fix, but I am definitely in a better place than 4 months ago. Best wishes to your spouse.

CG

[Jergen22345]

Hi Chicagogirl, we are at the nine week mark (approximate) now and I feel she is doing relatively well. The headaches have subsided, appetite normal, still dizzy and walks with a walker, but fatigue is not as severe either. I am happy with her progress, but her poor impulse control and outbursts of anger are difficult to deal with. I know this is all the result of a brain injury and it will take time for normalcy to return. Great to hear you are steadily improving. All the best Jergen

[Jergen22345]

Greetings, Jergen here, three months since spouse diagnosed with VM, and happy to report she is doing quite well, with daily dizziness and feeling of being light headed only remaining symptoms. Curious if others have experienced these lingering symptoms and how long before they have quieted down. Next step will be an MRI with contrast. Neuro says there is medication that might help if the films show fluid. Would appreciate any insight others might have into this. Also, she needs some dental work, and have been told to hold off due to her body's response to oral bacteria.