Second bout of VM?

[jaz_1226]

I contracted viral meningitis caused by HSV 2 in April 2019. Luckily was only in hospital a couple of days and was able to go home once they got the headaches and pain under control. I was sent home and instructed to take almost 3 grams of Acyclovir for 10 days. After the 10 days my primary care dr. lowered the dose to 800 mg daily which seemed to keep the virus at bay.

3 days ago I experienced a SEVERE stiff neck and back pain, along my spinal cord. The stiff neck is still pretty severe today, I can barely move my head. I'm not going back to the hospital b/c I don't have a fever, nausea, bad headaches like I did in April. Is this another bout of VM or am I just not fully healed from the first episode?

When I was in the hospital in April the infectious disease specialist said that many people get VM and just treat it on their own if the pain isn't severe. She told me how to treat it on my own by increasing my dose of Acyclovir and using over the counter pain meds. This has seemed to work in the sense that my symptoms are not getting any worse.

Has anyone else experienced this? I'm really hesitant to reach out to a dr. because 1) I don't want to have to go to the hospital again and expose myself to all of the trauma from a lumbar puncture and various IVs and steroids and 2) the medical community really doesn't seem to understand the recovery with VM.

[Amw41]

I’ve had exactly the same now 4 times. Each time less severe but yes they say treat yourself and it will pass. Don’t bother with hospital as they will day it’s a migraine but I know it’s not. It seems to be set off by something you do, eat or have such as the HSV(same as me). So just keep a record of the 24 -48 hours before it happens and then start to find the trigger. Good luck. It will decrease over time.

[kalirachi in reply to Amw41]

You are absolutely right when you say if they don't understand what is going on they will diagnose it as a migraine, I've heard so many people confirm this. After spending five days in hospital following all the usual meningitis symptoms I was given IV infusions of antiviral and antibacterial drugs and told by the infectious disease doctors that I could have contracted Weils Disease, West Nile Virus, Lyme Disease or Viral or Bacterial Meningitis. They said a lumbar puncture would provide further evidence of what it was but failed to carry it out properly so pretty pointless exercise really. They then diagnosed a stroke but 24 hours later confirmed this was not the case. When I left hospital I couldn't stand or walk even a few steps without every limb trembling and then falling over through severe dizziness and vertigo. I was told I would recover at home after a few weeks when in fact it took me six months to learn to walk without support from my partner. On the discharge form their diagnosis was 'chronic migraines'. I had no help or support whatsoever from doctors or the hospital. The first out patients follow up appointment with a neurologist was absolutely farcical. He stated the discharge form given to him stated I'd suffered a stroke, then he read a little further and said 'actually this does not seem to be the case. they have diagnosed 'chronic migraines'. 14 months later an ENT consultant wrongly diagnosed the constant dizziness and disequilibrium as BPPV. The Epley maneuvers the hospital's audiology dept carried out over a four week period to 'cure' this made matters very much worse. When they finally accepted these exercises were destroying what little balance I had they did a proper Electronystagmography and Caloric test which confirmed whatever virus I'd had had destroyed the vestibular nerve 100% to the left side and also paralyzed the horizontal canals in my left ear. All of this superb medical treatment was from The Sussex County Hospital in Brighton. Not somewhere I would return to willingly!

[Christine86]

I still take my valiciclovir (3,5 years) because my virus would flame up again! I m so sorry to hear. Docters don't know enough about VM. I would up youd dosis as take supplements like lysine

[jaz_1226 in reply to Christine86]

What dose of acyclovir do you take?

[Christine86 in reply to jaz_1226]

Sorrrryyy so late response! Moring 2 x 500 mg and evening 2 x 500 mg

[Amw41 in reply to Christine86]

Yep. Same.

[Debcorn]

Hi jaz .... I know exactly how u feel , I was sick and fever and then headache and rushed into hospital in June this year and was sent home with ten days on the anti viral aclclovir , having being diagnosed with VM .. I had a fever and constant head ache and was reluctant to return to hospital for the same reasons . The first lumber puncture took them 6 attempts to get the fluid and I didn’t want to repeat this

I did how ever have to go , I went in A n E had bloods taken and was sent home to return the next morning for another L.p again 6 attempts to get the fluid

It showed I still had high levels and VM , I was sent home to rest

So now still recovering . Still suffering headaches . Visual disturbances dizzy and generally rough

My temp went up and I threw up a few days ago but it passed

I don’t know if I should have gone again into hospital , like u . I am reluctant to go through anotheR LP just to be sent home to deal with it ..... hope this helps just to have some one to share experiences

[jaz_1226 in reply to Debcorn]

Don't second guess yourself about the hospital, just learn from your experience. I was on morphine when they gave me the LP, otherwise I don't think I would have been able to get through it.

I was glad I went to the hospital in April b/c I had no clue what was going on with my body. The doctors helped bring the pain and inflammation down quickly and hydrated me. The LP was pretty invasive but they had to determine whether it was bacterial or viral meningitis. They did their job of keeping me alive but it was impossible to rest at the hospital with being checked on and poked and prodded every hour. There was a lot of recovery from all of the hospital trauma once I got home. My gut was messed up from the heavy IV antibiotics and antivirals, and I'm sure the LP and heavy doses of steroids didn't help. I have a really great osteopath that I use as my primary care physician and if, in the future, I have a more serious flare up I'm going to reach out to her for a steroid to bring inflammation down and for pain meds. Though it's hard to get anything stronger than prescription Tylenol here in the US because of the opiod crisis.

[OfAllTheLuck]

I've been hospitalized at least 4 times in 7 years for Mollaret's meningitis. As explained to me by an infectious disease specialist, Acyclovir may or may not help. Some patients go years or decades between bouts while others are not so lucky. According to my neurologist, there's not a whole lot of research into Mollaret's.

Over the years I've found Mollaret's meningitis tends to divide doctors...some say it's no more serious than the flu while others say it always requires medical intervention. Meanwhile, sufferes are left confused and pretty much on their own.

[jaz_1226 in reply to OfAllTheLuck]

Is there a test they can do to determine if I have Mollaret's?

[OfAllTheLuck in reply to jaz_1226]

My diagnosis was made by a neurologist after my 2nd or 3rd hospitalization for VM and CFS tested positive each time for HSV2.

[Chri5ti]

As always I am blown away by this board. I continue to learn so much from you guys! Hear in the US they won't even acknowledge the recurrent bouts. Unless you have a positive LP that is. I turned down the valiciclovir because my more serious (debilitating) flare ups are about every 2 years and they can't guarantee the drug will stop them. I didn't like the possible side effects for something that may or may not work. No one ever talked to me about smaller flare ups but I'm thinking I must have them. I start to think I'm heading into a serious flare up and then it starts to subside a few hours in. Hmmmm. Something to think about. I just thought I had done some sort of permanent damage to the neck/spinal cord from my 5/6 serious bouts and that my migraines tended to aggravate those damaged areas.

Please keep us posted. Hoping you feel better fast and learn to manage your symptoms. Hoping you aren't rebounding.

[jaz_1226 in reply to Chri5ti]

I'm also in the US. The same thing happened to me where the symptoms were pretty uncomfortable and then subsided significantly within 3 days. I wish they subsided in 3 hours!

[jaz_1226]

Thanks everyone for your replies. I had some highly stressful events last week and consumed way too much sugar. I think the combination triggered the symptoms I experienced. For the past 3 days I doubled my dose of acyclovir, rested a ton, and ate only whole foods (when I had an appetite). As of today my neck and back stiffness are better by about 75%. Still feel pretty exhausted and tired and will continue to try to rest.

I'm still very confused about this illness. Was the virus lying dormant in my spinal cord fluid since April until it was reactivated last week? Or is this a whole new virus that somehow passed into spinal cord fluid? Also, does anyone know how the virus passes into the spinal cord fluid? When I asked the infectious disease specialist months ago she gave me a vague answer.

[Chri5ti in reply to jaz_1226]

I have been looking for the cause of mine. I have so far ruled out several viruses but not found the cause. For this reason alone I still continue to go to ER and get the LP's when I have a flare up. I want them to check the spinal fluid so they can check it for active viruses. I know I don't have the more common causes like Herpes or Enterovirus. I have been checked for things like Lupus and it came up negative but I would like them to check the spinal fluid the next time I have an active flare up of meningitis. I also have never had chicken pox but was exposed while pregnant in 1994. This was before the vaccine so they gave me Hemoglobin (?). I know that varicella zoster virus is slightly different and I want to make sure that isn't my cause even though they say HSV isn't the cause. I don't know I just really would like to know my cause? But I am sort of thinking I may never know.

[Jmac999]

I was diagnosed w VZ VM at end of May this year and had the 2 weeks AV IV. 2 weeks after treatment I woke up w raised glands, sore throat, mild temp and sore neck - with headaches getting worse. Went back to hospital and they were going to do CT Scans and LP again but bloods came back saying my CRPs were much better so we decided to ride it out (also due to fact that we’d had influenza at home). I was instructed to go OFF pain meds as neuro a we’re concerned I was getting rebound headaches as well. Seemed to work... 3 weeks later my headaches had reduced significantly.

This week (8 weeks post treatment) I am again struggling w a flare up ... haven’t been to hospital and just resting lots in bed, eating cleaner diet and drinking lots of water. I went back to work PT 3 weeks ago and felt pretty stressed last week, ate more sugar and had a couple of glasses of wine. I think it’s demonstrated that I need to keep eating super healthy, minimise stress and have gone back to no alcohol.

[Rowi]

About a year after I was at my worst with the meningitis (April-May), I got very sick again, mostly with new symptoms, but some of them felt familiar. It turned out there was mold in the house I was renting due to constant water damage. Mold can cause a whole range of symptoms. I'm only mentioning this because your new symptoms came about a year later, as did mine. It's probably not that, but if you need more info, fire away. Just be patient. Sometimes I take a while to answer. Hope you feel better soon!