undiagnosed hsv1 encephalitis?

[SkinNBones]

Just thinking out loud, wondering if my latest recurrence of hsv1 in i believe upper and middle division of trigeminal nerve (lesions on forehead) is actually now viral encephalitis that goes undiagnosed Theres now. extreme light sound and smell sensitivity, nerve pain and headaches, intense nausea, sweating, hot flashes, dizziness. When i was outside I thought i might pass out Also tinnitus. Was anxious leading up to it (not an anxious person)! and with recurrences get an odd symptom of exaggerated emotions usually leading up to it as well - again not a normal part of my personality I do not have fever though-maybe a half degree higher than usual if tget . Back in 2014 is when i first got the hsv1 in cranial nerve (and for years had hellish excruciating “zaps) through my head dozens of times jolting me out of sleep). After 10 years i tbought recurrences were finally milder. These current lesions on forehead took me by surprise and i had before tgat thought i was having sone unusual 3 day migraine Have read sometimes encephalitis goes undiagnosed. Oh and ive been a vertigo sufferer - not clear what role hsv1 has played

Please dont say to consult with physicians as thats not helpful to me (if i had more energy i can describe my history with docs which does not go smoothly when you are a zebra) but if any of this resonates with anyone would love to hear about it. Maybe there's some other zebras grazing in the pasture. Thanks (i think this recurrence has been brewing since i had a bad GI infection end of may)

edited to add - i should add last night at bedtime i suddenly felt so incredibly ill i did not know what would happen right now 24 hours later its not yet as bad as that but the headache is still unrelenting (though not what would say is severe)

[EncephInternational Partner]

Hi there, so sorry to hear about how you are struggling. We hope you manage to connect with others with similar symptoms or understanding of what you are experiencing. We may have resources on our website that may help encephalitis.info or alternatively send a message to our support email [e-mail]

[cg511cg]

I don't know if this information will be helpful to you or not, but thought I would share. My husband was diagnosed with Encephalitis HSV1 in May 2023. Leading up to the day we went to emergency, I noticed a few small changes in behavior that at the time I discounted, but later examined more closely as possible symptoms. His emotions were more extreme, he said some things that were totally out of character, and he was more contemplative. His physical symptoms were fever, dry heaves, nausea, then confusion and dis-orientation and lack of balance. So the latter symptoms (confusion, disorientation) were caused by the seizures going on in his brain. I mis-took these symptoms for stroke. He also had extremely low sodium level. The doctors diagnosed him the first day at hospital, first blood tests, then MRI which showed swelling in the brain, and finally a spinal tap which pinpointed the disease as Encephalitis HSV1. He was in hospital about two weeks, then rehab two months. He still takes 3 different anti-seizure medications and will more likely be on them the rest of his life (he is 69). The doctor says that the benefits out-weigh the risks of staying on. In recovery at home, he had excruciating what he called 'skull headaches'. He took Tramdol for these and basically had to sleep though them. Thankfully, the horrible headaches are practially non-existent now.

Best to you in your search.

[SkinNBones in reply to cg511cg]

thank you very much. First i am glad to hear he is recovering compared to before and his head pains are gone. And thanks very much for sharing story. It is helpful.

When i first got the hsv1 in odd places where docs often wont believe me- (head and chest- ) the shooting head pains were very severe. Theyd wake me up the moment i fell askeep making fir agonizing nights. My head would also feel like someone had flung it a ross the room or pit it in a roller coaster- but it wasnt vertigo at least not kind am familiar with. I made the mistake of describing the pains as “zaps” rather than excruciating pain becaude it was so different than “headaches”.

The emotion thing is both interesting and disturbing and the extremes have made ne use a tone of voice and say things i do not usually if snyone is around

From what i have been reading ite possible to get “mild encephalitis even repeatedly Im glad i dont have fever and obvious seizures but feels like something bad and destructive going on especially when theres also the possible link to alzeimerw and hsv and ive noticed attention impairment.

Fee better today than last few days at least so far. Its worse at nights. . Have been snorting acyclovir powder as much as able.

Thanks again

[cg511cg in reply to SkinNBones]

SkinNBones, I'm wondering about your use of 'acylovir powder!' After my husband's diagnosis , the doctors started him on an IV administered aclylovir, which lasted for 21 days. They said it was the specific antibiotic that would kill the Encephaslitis virus that he had and that it had to be administered very slowly into the body or there could be very adverse side effects. After 21 days, he went off it and hasn't been on it since. I remember asking if the disease would come back, and they said it was pretty unlikley. I never heard of it coming back in people before I read your above post. So, I think it's odd that doctors are having you use acyclovir powder if they don't think you have the virus! It doesn't sound like you're very happy with your doctors. Wondering if you are in a location where you can get another opinion....

[Gandalf2]

I had a friend who suffered from trigeminal neuralgia, which made his life a misery. Knowing another sufferer who fixed it this way, I suggested he try wild celery seed - he did and it fixed it. I hope it works for you. G2