Does anyone have bad head pressure, nausea, anxiety, lack of appetite, trouble walking, cognitive problems, etc. from their encephalitis?
Head Pressure: Does anyone have bad... - Encephalitis Inte...
Head Pressure
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Becksblue
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Hi Becksblue,
Thanks for reaching out. I had encephalitis in 2017 and I definitely empathize a lot with you as I have experienced some of those symptoms too. Encephalitis is such a complex disease, the after-effects can be confusing and complex too!
To break it down why not have a look at the encephalitis societies fact sheet: encephalitis.info/Pages/Cat...
I know it's hard but if you are ever worried, it is always a good idea to reach out to a professional such as your doctor and see how they can help you.
Here is a video that might be of some help: youtu.be/VHmf0hTGbo0 I find it helps to relate to others and to know other people have similar experiences after encephalitis.
The Encephalitis Society is always there for you too so feel free to reach out at any time!
Doc diagnosed me with Lupus Encephalitis which is autoimmune and not viral. I don't understand reading about after-effects of having encephalitis. I know that people with viral encephalitis will probably recover once they get rid of the virus and then their brains will probably stop being inflamed, but I probably will have it forever since it's autoimmune encephalitis. An MD doc about five years ago also diagnosed me with Memory Impairment, Amnesia, and Stuttering plus now I also have heart problems-Paroxysmal Tachycardia diagnosis as well. I still have all these health problems and they keep getting worse. I have severe anxiety where I can never calm down, loss of appetite and thirst, depression and OCD also. I also have incontinence problems now and had a problem tonight again with it. I believe my Encephalitis is drug-induced and caused by benzodiazepine damage. I took benzodiazepines for about 3 years and in 2012 had a seizure at work and my cognitive functioning has never been the same since. I was never able to work again after that and I had a very good job and used to run my own lab. Now I can't even balance my checkbook anymore. I also have stomach problems too and I never had them before until I did a cold turkey off the benzo's. I feel like I'm going to die every single day. I think the benzo's damaged my brain and nervous system and now I'm having an autoimmune response to my damaged nerve cells. Does anyone else on this forum understand what I'm saying or know of anyone else with these problems? I get on a forum called benzobuddies.org for support too from the damage these drugs have done to me. I'm convinced I have drug-induced Encephalitis.
Hi Becksblue.
I'm really sorry things have been so tough. I have Autoimmune Encephalitis too, so I can relate a lot with you on some of the things you have said. You have explained it really well and from my own experience, I know it's not easy sometimes to explain some of these symptoms we face post-encephalitis.
I think it would be beneficial to contact the encephalitis society where you can chat over the phone or zoom instead of reading things as I know I find it hard to concentrate!
Here is the support page: encephalitis.info/support
The society also hosts support gatherings for those affected by encephalitis: encephalitis.info/blog/virt...
It might help to chat to your doctor also, to help better understand what is happening to your body and brain post-encephalitis.
I know it's really hard, thanks for reaching out, this forum is always here to help you and we understand you and the difficulties your facing.
I'm housebound and never go anywhere anymore unless it's emergency shopping. Plus, I have trouble speaking and it's painful for me to talk, so don't talk on the phone unless necessary. I have stuttering problems too now. My brain and CNS are completely wreaked!
Hi Becks, just got your email via EncSoc the other day. I'm sorry to hear you are having such a difficult time of it. Enc affects people in so many aspects of life that it's very difficult to untangle the knots. Memory loss is a big problem for me I quite often forget what a sentence is about before I get to the end of it. Keeping a diary is essential and a dossett box for medicines with a tick list to keep track of when I've taken things. I can go out on walks and drives with my wife, who luckily does the shopping and cooking. I do what I can to help out, but motivation and fatigue are a big problem. Support took a lot of pestering to materialise and there is still a lot to come. All understaffed, underfunded, overstretched and long waiting lists.
Initially it was awful, everything tasted bad, no energy, no appetite, sleep problems etc. Gradually things improved as time went on, the meds were adjusted, went for walks longer and longer each time, After the first walk to the end of the road I had to rest for two days! I'd been on a ventilator and in an induced coma for a few days, nearly died - it was touch and go.
I had to relearn how to walk, shave, eat, dress etc. I didn't quite recognize myself in the mirror, or my clothes and possessions. In my experience it's possible to make a good recovery but it takes time - months/years to build the confidence one once had. I still haven't been shopping or caught a bus - all still to be attempted.
I've got a couple of medAlert type wrist bands and a digital watch that tells me the day and date. Music is a great help and videos on YouTube in moderation.
Hope this helps, Best wishes, G2
Local moors
I have much the same seems to be in monthly cycles too when I am good I am fine then it all relapses Don't eat for days everything tastes the same and awful
Hi Becksblue,
I unfortunately can definitely relate to all the symptoms you are saying. I get bad head pressure too particularly behind my ears and around the side of my head. I have to use a walking stick since encephalitis in Oct 2018. Mine was viral encephalitis and meningitis cause by HSV1, but it’s caused permanent damage to my frontal and temporal lobe.
It’s very hard to adapt to the changes but reading others stories and posts helps. Wishing you all the best. X
Welcome becksblue. I notice head pressure when my symptoms are flared up, and seems to be tied into how my left temple feels and eyes muscles feel 'strained'. i think when the pressure flares, then the ataxia and impaired vestibular ocular reflex make my eye muscles adapt in a different holding pattern. day to day i don't notice pressure any more. I haven't heard of drug induced encephalitis but it makes sense if it would trigger the immune system. i am not sure what i going on with me, i am waiting for an accurate diagnosis. i had viral encephalitis in 2017 and then was fine for 2 years, now symptoms just keep adding on. possible autoimmune encephalitis but so far haven't met a neurologist who cared enough to check that. I meet a new one next week, fingers crossed!Best wishes for acceptance and recovery for you.
No head pressure but the rest yes
I also cannot handle any kind of stress either or any change in my routine each day. But it happens and I can't control it and it makes me feel very ill. Thanks everyone for your replies. It does make me feel better that I'm not so alone. Right now I'm lying on the sofa and I have really bad inner trembling in my body along my spine and in my legs and all over inside. I don't shake visibly on the outside but inside the nerves in my head and body feel like their boiling all the time. My CNS is completely fried, and it's very sad that I'm so sick all the time. It causes me to be extremely depressed all the time too.
Even trying to figure out how to use this forum is causing me stress because it confuses me. I also have bad OCD, too. I keep replying and don't know where the posts are going. That's how bad my cognitive problems and confusion are now. I can't believe I have six years of college credits and a two-year degree as a Medical Lab Technician and now can't even balance my checkbook anymore. I also used to work full-time and run my own Constructions Material lab at work. I also feel like I'm dying nearly every second of every single day. I'm always afraid something is going to go seriously and I won't be able to handle it. I should be in some kind of long-term care facility, but I live alone. I'm so screwed.
Yes, I have all that. I have spoken with doctors and no one seems to know what’s going on with me. My doctors at this time don’t think I have encephalitis. Other symptoms I have are fluctuations in my mental clarity throughout the day, short term memory issues, coordination issues at times, and fevers. This week I’m going for mri of my brain to see what’s going on. I hope it gets better for us.
Lack of appetite nausea memory issues lasts few days then gone happens every few months of if I get a cold or flu jab
