Had a follow-up meeting with my neurologist recently to check on progress. It’s been 16 months since my HSV diagnosis. We discussed my symptoms. These are what we concluded:-
Main current symptoms:- General anxiety, extreme health anxiety, crying, queasiness, shivers, easily stressed, unable to make decisions, crashes (mix of everything but getting less frequent).
Symptoms which have reduced:- Brain fog, detachment, headaches, dizziness, fatigue, feeling of being unwell. Few memory issues. No seizures.
Meds: anti-seizure.
He also reaffirmed I had scarring which has resulted in me having an ABI. Apparently only one side of the brain became inflamed which he said was unusual as HSV usually affects both sides. It was also the non-dominant side which explains why I have very few memory issues. My current issues are emotionally related (Anxiety, stress, crying…) which all still seem extreme at times. I asked if I would be able to come off the anti-seizure drugs. Apparently, I need to be 2 years seizure free before he would consider this.
Anyone else able to come off anti-seizure meds after HSV?
He concluded I was on track but may benefit from anti-depressants which I am reluctant to take.
Anyone else on anti-depressants?
Remos
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Remos
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Hi Remos. Those symptoms absolutely resonated with me. So you sound like you are making great progress after only 14 months although I bet sometimes it doesn’t feel like it! I still cry more easily but at something rather than randomly!! Queasiness gone. Brain fog takes a lot longer to kick in, mainly after a long day or someone talking at me for ages! Only takes 10 mins to clear. Fatigue ditto. Anxiety…health worries… I’m still working on them! Loads better than they were but it doesn’t take much to set them off again but much less severe or disabling. Not sure if you’ve read Old Gnomes comment but if not I can confirm that the difference time has made has been slow, incremental but now I do feel so much stronger in myself. My confidence in trying new things is vastly improved. Physically I know I’m stronger, walking normally and the dizziness is to do with my eye more than general balance.
So to actually answer your questions. I came off anti seizure tablets after only 3 months. My neurologist was great but didn’t really know it understand encephalitis much. No one did 4 years ago!! And I’ve never taken anti depressants. I have been tempted and I know they help some people but for me (and I know from our previous conversations for you) meditation/prayer/a quiet space do help combat those feelings. I don’t feel I need medication at all now. I’ve even avoided anything to help me sleep which is still a bit of an issue. Not sure this helps though!
Firstly, apologies for taking so long to reply but believe it or not I'd no sooner posted the above when I was hit by a wall of fatigue and anxiety (first in weeks). I think I probably know what caused it. Had a number of situations to address which all came one after the other and stressed me out for a number of weeks previous. So I guess it was "payback" time. Took about two weeks to lift this time but I seem OK now.
As you mention the gaps between crashes are defiantly getting longer which is a great relief. I just need to avoid stressful situations wherever possible. Great to know you're making steady positive progress in most areas. This is really reassuring. Interesting about you coming off of ant-seizures after 3 months (good for you).
I'm with you on the anti-depressants. Meditation, walking and "distraction" all help. I've also taken up playing the Ukulele 😆.
Aargh to the crash. However as you say, horrid when you get them and such a relief when they lift. I am finding that I mainly crash now after a major stress event when my adrenaline spikes and drops. And even then the crash is nowhere near as down. I crashed yesterday after the stress of hospital, but it was a more ‘gentle’ crash where I physically just stopped but didn’t have the major anxiety/desire to cry/irritability. Tired today but not badly.
Like you, I’m trying the deep breathing exercises. Meditating on something I’ve read, or just switching off in front of the tv. Because of my eye I can’t read a book for another couple of weeks so replaced that with gentle podcasts!
What I can say is that 4 years on I know how much I’ve improved. Even in the last year I’ve seen a difference in brain and body and that’s with dealing with three eye ops now in 9 months!!!!!
just to add that we can’t avoid stress, and you are dealing with things so well after what is honestly only a short time on this journey. I’m grateful I’ve made it to where the dark has become grey and the shiny times have become brighter and even that horrid anxiety is less heart squeezing! You’ll get there. W
Hey, Remos. Sounds like you’re making good progress! I find it best to review progress in terms of months and years, not days or weeks—because everything can seem slow or the same in the short-term. It took me 16 months to taste chocolate normally again, but I’m starting to forget that I ever lost that ability haha
Also wanted to comment on the antidepressant question. Your doctor might not have seen this recent research paper, but it’s incredibly important. It challenges the very idea that antidepressants (SSRIs) even work… and found that they don’t work at all for the vast majority of people, meaning that those who take placebo (sugar or something like it) tablets and think they are taking the real thing report similar levels of improvement compared to those who took the actual drug. More broadly, they found ZERO connection between serotonin levels and depression. Decades of antidepressant use and depression research in question! Crazy! Anyway, maybe you want to show this to the next doc who tells you to take them.
Thats a fascinating study. Really interesting. Everyone is different with different needs. But I’m glad I was able to choose not to use medication. (Well I do take paracetamols! 😄).
Apologies for the delay in responding to you (and everyone else) but as I explained to Wygella I've had a few stressful incidents which resulted in a crash just after I'd posted.
Anyway, your view on anti-depressants mirrors mine. Also the link to the research paper is very interesting. Can't say I understood all of the terminology but the analysis of the data from the sample group and conclusions drawn are quite revealing. Probably explains why anti-depressants don't work for everyone. I'm a firm believer that your body can heal itself if you give it a chance and not flood it with meds (just my view). The research didn't mention it but the fact that many anti-depressants can cause unpleasant side effects (some quite severe) was enough for me to think carefully before taking any. I still haven't, although I do have a prescription given to me by my doctor which is currently in the meds cupboard.
No worries about not understanding the scientific terms; you got the gist of the article! It's honestly even worse that what you said: anti-depressants barely work for ANYONE, especially those who have a circumstantial or situational reason to feel down, e.g., divorce, unemployment, death, loss, grief... and definitely encephalitis!
Drugs can of course save one's life. I would have died two years ago without medical intervention, but, in the case of acquired brain injury after encephalitis, I think doctors are too flippant in prescribing drugs and patients are too impatient in the healing process. We often want the pain to go away and to be healed, but no drug can heal our brains fully and completely. We just have to decide if it's worth trading or adding a new set of problems (from side effects) to find some relief from one of the many existing problems. I've found that it's generally not worth it, but there are some exceptions.
Such a good balanced response. Thanks Kit. I agree with you and am grateful that actually my GP hadn’t a clue about meningioencephalitis so left me to a neurologist who was more concerned about my physical difficulties like balance and walking. However I also know for some people antidepressants really are necessary.
My mum was diagnosed with encephalitis 6 months ago . She has the emotional issues you are talking about . She is constantly worrying about death and thinks we are all going to die - which I can only imagine must be terrifying !
She cries all the time ( she barely cried before ) and the slightest thing will set her off . She is very irritable when she’s not doing something and finds it incredibly hard to relax . I can only hope that in time this will improve .
Did you go for rehabilitation if you don’t mind me asking ? I only ask because my mum is currently at a neuropsychiatric rehab place which is 170 miles from home . It’s so hard because she keeps ringing me up crying and I can’t see her as often as when she was in hospital 😞 but I just hope she won’t be in there too long . She takes diazepam 4 times a day but I don’t know if she should now be weened off it .. you put your trust into these people but I am also very cautious because I don’t always know whether I should or follow my gut instincts 🤔
Once again apologies for the delay in my response (see above). I'm so sorry your Mother is going through this nightmare. As you say we seem to have a number of similarities (crying, health anxiety, irritable).
To answer your questions:-
I never went to an institution but I did have rehabilitation - to a degree. I had a number of sessions from several services as well as a number of group meetings with others who were suffering from brain associated injuries. The initial sessions were on a one to one basis with a NeuroPsychologist which I found helped at the time. These stopped after about 6 sessions. They were replaced by a service from IAPT (improving access to psychological therapy) for which you can self refer. Any issues speak to your doctor about being referred. The service is for people with depression and/or anxiety disorders. Again I found them useful. I still self refer myself when I feel I need the support.
The group meetings I attended were of limited use as I found they were always dominated by one or two people who wouldn't give others much chance to speak.
What I found/find the most helpful is being close to family as I literally need a shoulder to cry on and for someone to hug me. I have to say I genuinely feel better after a good cry.
So your Mother being so far away must make it very difficult for both of you (170 miles is a lot). Isn't there anywhere nearer????? As mentioned in my exchange with Kit I have managed to avoid all anti-depressant drugs even though I constantly get advised that they would help. I'm no clinician but isn't diazepam the name for Valium? If it is then I do know that this is usually given out for short periods as it can become addictive. I should get this clarified by the staff.
I'm not sure if any of this is helpful but please feel free to respond with any further questions you may have and I'll do my best to answer (hopefully on a much quicker basis).
Yeah, valium and diazepam are different names for the same drug. I take it for MRIs and short things like that. It's very addictive beyond a couple doses. Even the two doses for MRI in August left me wanting more; it was nice not to spaz or react. Everything has a cost, and, in the case of benzodiazepines, it is a very high one.
I have been on antidepressants for about a year. I was diagnosed with GFAP autoimmune encephalitis in 2018 and it has been a rough road on many levels.
My doctor gave me a prescription for Celexa and Wellbutrin. They help me. I don’t think it is a placebo effect since I often forget whether I took them and have to check my notes to see if I did. I was told that these drugs work differently and together have a combined effect that works better than one alone.
I remember some of what it was like before I started taking these and I know there has been a big improvement. My life continues to have struggles, but I am better able to handle them. Much fewer emotional issues, thank god!
Thanks for your reply and apologies for the delay in responding (see above). I've heard from many sources that anti-depressants help many people and to be honest they may well help me. But as I've mentioned I am very worried about side effects. The problem for me is that I know they take about 4 weeks before taking effect so if I get any weird side affects during this time my health anxiety will kick in and I'll start to panic ( and probably stop taking them). So I guess I'm putting up with a lot of upset at the moment in the hope that things will improve over time. As I've mentioned having a loving and sympathetic family around me to help is huge.
I must admit I often feel like I would take anything just to help me get through certain times - but so far I haven't.
Always good to have another opinion. It's so important to ensure we all have a balanced view and understanding to enable us to make informed decisions.
Really appreciate your response. (Be seeing you!).
I apologise for my tardy reply to your post; things for me are improving in so many different areas that I find that time is moving too quickly now! However, I am halfway through year #5 of recovery. You are not as far along but it sounds like you are making remarkable progress!
In year #2 of my recovery, as I recall, I was an emotional "basketcase", with far too much emotion/crying and mood swings. So what you are experiencing sounds a lot like what I went through.
I never had a seizure and cannot comment on medications used to treat it, but I am a lifelong sufferer of anxiety/panic attacks and will comment on the meds I took to try to tame it.
Initially, I was prescribed Diazepam which my doctor decribed as acting like "taking a stiff drink". It did indeed immediately tackle the anxiety/panic but only lasted for a few hours at a time. I found that I needed more and more of it in order for it to work effectively, which is what I was warned about. Any Benzodiazepine-class drug will work initially, but is NOT meant to be a long term solution. It was designed for temporary use only. Any med containing the suffix -lam or -pam is most likely in this drug class.
The SSRIs and SNRIs are another type of drug designed to tackle anxiety/panic/depression but they are completely different from the benzos. They take 2 to 4 weeks, or even longer, to start working. And during that time, the side effects can be horrendous, as was the case for me. When they started working, I found that I was a sort of zombie, almost completely disconnected from any emotion and also very very tired all the time.
Currently, I have a prescription for Buspirone 10mg tablets. I can take 3 per day as needed. I currently take only 1 per day, along with my other hypertension meds. And I found it to be as effective as the benzos, but without the narcotic effect and needing to take more and more.
Now that I have mentioned a bit of what I have been through with the meds, I wonder if I even need the Buspirone any more? I believe I will now make an attempt to stop taking it, and see how I feel. I will not stop taking them immediately; but will take one day off, then one day on, etc and see how I feel. I am convinced that the less meds any one needs to take, the better.
And now I apologise a second time for the length of this post. I put a LOT of thought into them at times, and can cure the worst insomniac with my writings! 😆
In closing, the choice to try any of the meds is wholly up to you. Some people may indeed find benefit in using them. But they are like having a large ring of keys and one lock. Finding the right key that will open the lock is the main difficulty. Being brave enough to even try using any of the "keys" is one of the difficult parts. I wish you all the best in your forward progress and if you decide to try the med route, I'd be interested in knowing how you make out, as I'm sure many others would. As always, feel free to PM me if you wish to discuss any other specific issue, or even just to send a bunch of e-lupines!!
Now it's my turn to apologise for my tardy response and please never apologise for the length of your responses. I really appreciate every word of wisdom you so kindly offer.
Seems like you're somewhat of an expert when it comes to anti-depressants. Your experiences are very helpful in helping me (and I suspect others) come to a decision of which choice to make.
I also very much appreciate you reminding me of where you were at a the same time period in your recovery. Seems I am experiencing very similar residual effects as you did during your second year of recovery. Really good to know you eventually managed to overcome many of these issues over time. I guess that's what I hear from many people in that it's all about time. Just sometimes wish I had a time machine to take me forward a few years. I suspect this may well have been one of the many projects you've worked on in the past 🙂.
I'll PM you shortly for further convivial discussion.
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