Hi, my wife is going through Herpes Encephalitis at the moment. She's 38, the same as I. We are in our 7th week. I took her to ER in a good condition when that started. She was just having mild memory problems what was highly concerning to me but I would have never imagined she was in such a grave danger. She was admitted and after 24h ended up in ICU, fighting for life. They told me to say my farewells 3x. First when they didn't know what's happening. 2nd when she had surgery to remove skull bone, 3rd when MRI was really bad days after. It took 2 weeks of heroic efforts to stabilise her. 4 weeks and she woke up to everyone's surprise. Waking up does not mean waking up though. I really struggle to explain it to our families. I moved her to a specialised 24h rehabilitation center a couple of days ago. She's started making rapid physical recovery, moving hands, head, legs a little. They are planning to put her on a wheelchair next week. The issue is that I still don't know where we are neurologically. I even don't know if she remembers me. They tell me that its up to my wife now. I tried countless ways to communicate but I just can't lie to myself, it's all random. She looks in my eyes, she can focus her sight but I just don't have an idea what she's thinking. We have a daughter, 3 years old. I have been telling her that mommy is ill and we are waiting for her. I am reading survivor stories and in most cases the hospital stay is described briefly. I sometimes question myself what are the chances after such a hard battle. Is she still going to be able to be a mommy and my best friend? I don't really know what I expect from this post, maybe just sharing my worries and frustrations. Or maybe I am looking for a hope as I know every case is different and no one really knows. Thank you.
Hsv-1 encephalitis battle- partner's ... - Encephalitis Inte...
Hsv-1 encephalitis battle- partner's question
Hi GCherokee, first of all, I am so sorry you are going through this. It is very scary and can be a rough few weeks. My son is 30 years old and in middle March he told me he was having bad headaches. I told him to go to ER, but he was afraid to go alone. When he had an episode of mumbled speech for about 2 hours, I was able to get him into the ER. They took him back fairly quick and did a Lumbar puncture which was positive with HSV1. They kept him in the hospital for 7 days on IV infusion with Acyclovir med. During this time, he had some memory issues, such as names of objects and people. After the week he come home to us to stay while recovering and they sent him home on the same medication but pill form every 8 hours. He seemed to be doing okay, but 5 days later he started to decline and nothing made sense that he spoke. We immediately took him to the ER again, and they admitted him to run more tests. Kept him for a week again ran many tests and sent us home with home IV meds of the same meds and anti seizure meds as he was having small rigid movement like motions which were small seizure we think, we had to give him IV infusions every 8 hours at home. Then on the second night he pulled out his PICC line, which is the line that they inserted so the IV meds can be hooked up. We had to rush him to ER again, to have it put back in so we can continue the meds. He kept getting worse, he ended up in ICU for a good while, not speaking and not able to get out of bed. It was scary, he just stared and was emotionless. Not responsive to any questions, after a week, the doctors said they did not know what else to do. My friend during this week told me about the movie Brain on Fire, and I watched it and went down to catch the nuerologist while he was making his patient rounds at the hospital! I just knew my son had the same thing from the movie. I asked the neurologist to test my son for NMDAR encephelitis and he said he would. Sure enough the results were positive! That was a game changer as the treatment for that is way different. They right away started him on IV meds Rutixan and IVIG. Please have them test your wife for this. Our son said his first words after weeks of nothing hours after his first dose. We are 7 months our from the first ER visit. He came home after 12 days, and the first week home he was able to start feeding himself and using the restroom alone. I am going to send you a list of doctors that treat this rare disease. 1 in a million get this. We found a wonderful team here in California that treats this disease. I will help any way I can with info. Hang in there, it is tough I hope you have help with your daughter and home. We made sure one of us stayed at the hospital with him every night and day. Since he could not speak we needed to be his voice, and so do you.
Hi GCherokee, maybe I can give you some hope. Six years ago I was hospitalized for cognitive problems including memory that were eventually determined to be caused by a rare form of autoimmune encephalitis. My family was also told to say their goodbyes and I had some skull bone removed to relieve the pressure on my brain. Samples from a brain biopsy were sent to the Mayo Clinic where they determined what I had. After I started getting the right treatment, I recovered enough to go to rehabilitation. There I had to relearn so many basic things. Even chewing was difficult at first as I kept biting my tongue.
My mental state was the worst though. I did not know where I was, what had happened to me and I could not communicate. I thought I must be in hell. My wife, god bless her, stayed by my side and was positive, helpful, and encouraging. Even though I could not speak, I could see her, feel her hand holding mine, hear her encouraging words, and know that I would eventually come out of this.
In the hospital I made small incremental improvements. I was in a wheelchair at first, then graduated to a walker for a while before I could walk on my own. It took me a while to get used to walking on a treadmill but the physical and mental improvement continued over time.
Today I am fully recovered. It was a long road at first. I had physical therapy, speech therapy, and a psychologist to help me cope with what had happened.
Hi, I am so sorry to hear about your experience. I hope you find some comfort on here from others who are going through / have been though something similar. Our helpline manager, Jon, may be able to offer some support and answer some questions based on the past experience of others. Our helpline number and email is: +44(0)1653 699599 support@encephalitis.info
We also have online support groups held monthly. Details can be found here: encephalitis.info/online-pe...
Dear GCherokee, I wish you strength and energy to cope with your situation. It is early days and hope things will get better for your dear wife. Please reach out to support from family and friends as you also need support as a father/husband. All the best to you and hope this chat group has provided some help and support 🙏
Życzę zdrowia i cierpliwości... We are going through encephalitis with our 22 yo daughter...it's harrowing.
So sorry you are going through that.
How are you doing?
Hello, your wife is very similar to me. I couldn't wake up for a month. After hospital ,there is no rehabilitation here. I was like a new born baby. At first, I couldn't know my husband and asked him "who are you?". This illness has a different affect on everybody. My memory has been affected. It has improved according to my first time
Hi,I had same as your wife in 2020. In my worst days I could still hear and know voices who loved me.Absolutely be her advocate and her support as it is a battle for the right medical support and understanding from friends and family.This site has been set up as E rarely understood.It is a fight but if you are by her side she has a better chance of recovery. I work full time and live a full life with only few after effects like memory issues,struggle with strobing lights or fast scenes on tv but it took 2 full years to get where I am.Take care.x
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