I was seriously ill and hospitalised with Meningio-Encephalitis in August 2011. Over the past two years I have been experiencing regular 'episodes' that knock me out for 3-4 days at a time: extreme weakness, light and sound sensitivity, headaches, disorientation, no concentration, loss of balance, loss of appetite, sleeping for hours at a time.
I was referred to a Neurologist and after being admitted into hospital for five days, as I had a very bad 'episode', I had an MRI, a Lumbar Puncture and many blood tests. My neurologist is 'cautiously optimistic' that I have been getting severe migraine episodes, probably brought on by the Meningio-Encephalitis. I am now on Topiramate, which seems to be keeping the attacks away but I am concerned about the side-effects of this drug as it is usually prescribed for Epilepsy.
Does anyone else have a similar experience they would like to share with me? I'd be very grateful to hear back
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Covenham
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I had BM 18 months ago and still get really bad heads. My gp talked about epileptic drugs but I feel my head is already messed up (short term memory problems, word finding difficulties etc) and I didn't want to risk making it worse as I know it is a possibility that these drugs can have a cognitive effect. Mind you , right at the moment I would love a bit of relief from a rather horrible headache that has lasted nearly a week. My son (aged 12) has migraines that are nothing to do with menigitis and his neurologist at Great Ormond Street hospital has prescribed him beta blockers and they have really helped him.
Sorry you are having a rough time. Menigitis is horrible. Hope you find some relief.
Yes, I too had dreadful headaches and tried various migraine medications which didnt help. If you had a lumbar puncture as you were origially diagnosed, that often causes migraine i the future (I think in about 25% of cases I read). Try if you can to get some alternative therapy, ie cranio-sacral therapy or acupuncture first if you can afford it. I found it worked for me and I dont have any headache or rarely now.. only when stressed. I had my meningitis encephalitis in 2009. Hope you can see some hope here for the future I know its really hard when you are in the midst of it, thinking of you.
i also had meningoencephalitis, mine was back in October 2011 & what you describe is very similar to what happens to me, some of the flare ups can be so bad that I think it's all going to happen again, so I completely understand what you're going through!
I had a neuro follow last Friday, and was told that the brain is still healing and it takes a long time - even more than 2 years, I was told that I have too high expectations and when these episodes happen its the brain's way of saying "slow down I can't keep up". I tried cranial therapy thanks to the Meningitis Trust ( who are just great at offering support) but it didn't really help much for me - each person is different, it might be beneficial for you.
Also have you been in contact with the Encephalitis society - they sent me a fantastic booklet ( more of a book really) which explains everything we are going through so well - I would highly recommend this as it has helped me and my family understand the condition better.
Rhiannon - thank you so much for your suggestion about contacting the Encephalitis Society. I called them after reading your 'reply' and spoke for AN HOUR (!) to a lovely chap called Jon. He was a great listener and a really helpful person. He told me so much stuff that I didn't know and it made sense. I was surprised that The Meningitis Research Foundation didn't suggest I contact the Encephalitis Society as there is a lot of cross-referencing with those who suffer from Meningo-Encephalitis. Anyway, I too got the book and a lot of interesting leaflets to read. So, thank you again for your suggestion.
I don't know how old you Rhiannon are but I was 61 when I had my attack in Aug 2011. I guess when one is older these things take a bit longer to heal so, I was interested in your comment that your neurologist said your brain was still healing two years after your attack, which was in the same year that I had mine.
I'm retired now so unlike Mobi1, I can take breaks and lie down if I need to - it must be so hard if you have to look after little ones.
One last thing - do you take any meds? I'm on Topiramate 50mgs once a day now and I am beginning to feel better although, my energy levels are low but then I was diagnosed with Bronchiectasis in Feb 2012 and have to take meds for that condition too now. Hey Ho
Thank you so much for your lovely kind and thoughtful responses. It's true when they say - having people 'out there' who truly understand what you're going through is so supportive and caring - thank you all again
I was initially offered beta blockers Blim but as I was diagnosed with Bronchiectasis (with underlying Asthma) in 2012, I'm unable to take these drugs.
Interestingly, no one seems to know why Topiramate, which is a drug used primarily to control epilepsy, works so well for migraine sufferers. I've also read that Topiramate can be used in controlling alcohol addiction!!! OMG, it's obviously some kind of wonder drug
I hadn't contacted the Encephalitis society actually, only the Meningitis Trust and Meningitis Foundation. I'll definitely do so now Rhiannon; that's a good suggestion thanks.
Acupuncture has always worked well with me in the past and I'm a great believer in Alternative Therapies. Thanks Canada.
One last question though . . . . do any of you feel that since having Meningitis your personality has changed? I'm 63 years old, married with 3 grown up children who are all married and I have two gorgeous grandchildren. I used to be a sociable person who enjoyed going out but since being ill (Meningitis and Bronchiectasis) it's all changed. I wouldn't say I'm house-bound but I think I must have left my confidence and self-esteem in hospital. I don't want to sound a moaner here but I would like to know how you all cope and what helps you.
I also have suffered the same debilitating h aches, along with nausea, dizziness for 3+ years, my neuro offered me meds but I was reluctant to take, it just made sense to me the brain needed to heal & I believe as natural as possible seems to be the best even though at times I was so knocked off I couldn't cope... For me the last LP I had seemed to help my h aches diminish.... When having LP they say h aches are inevitable I was dreading the after affects, I had heard drinkin milk hydrates the body more than water so I drank skimmed milk after and no h ache whatsoever. as for personality change, oh yes something I hadn't thought about to be honest until I was talking with my husband about this and he said I wasn't the person he married, I was taken a back it was a big shock to me and made me accept yeah I'm not the person I was but how lucky was he to have had two wives!!!! u no what u have to make lite if these things sometimes however hard it gets..... I try to think for whatever reason I had this illness there must be a positive to come out of it somewhere....
Ive I learnt not to be so 100 mph and to take things slower... My confidence has taken a big knock, i find it hard to sometimes keep up with conversations or drift off, i avoid the meeting in the street with an old family friend or old school mate it's too much like hard work for me....The rest I take each day and remember I'm only human.... Read a letter to my brain if u haven't already it's not a book it's what it says a short letter from a brain which has been hurt, this helped me so much as I was frustrated with my lack of healing, 2 yrs still unwell, I struggled, mindfulness meditation and deep breathing also helped. My motto is .... Things can only get better...
I am sorry to hear that you are still suffering from effects from VM.
I was diagnosed with VM in May 2011 and having been admitted to hospital and eventually had the tests lumbar puncture etc to confirm VM. After 4 days of not being totally aware I was let out of hospital with no after care plan other than 'if you feel unwell go to your GP'
Since then I have suffered daily headaches of varying degrees of pain as well as, confusion, memory loss, fatigue, mood swings etc etc. I was referred to a Neurologist who basically said it was down to lifestyle, two young children, sleepless nights and work that was causing my symptoms. I was given Topiramate which messed with me for 9 months and I became more irritable and insular (according to my partner) and very mood, I can't remember much about the time that I was taking these pills. Since then I have refused to go on and pills as I can't put my family through that hurt and stress again. Yes I suffer but my family are more important etc etc, and the Topiramate didn't solve the problems.
More recently the head aches have got worse, moods variable, memory not great, and more light sensitive to light (sun glasses on 24 hours a day in and out) in addition to this I have become less active and more insular preferring to stay home and not venture out (not good with two young children as they need to be out and about)
My GP (albeit a grate professional) who I respect does not have a full understanding of my situation and I find it frustrating explaining everything to her as I feel she does not know what to do.
I have had to push to be referred to yet another Consultant Neurologist who specialises in the admission of Botox, which has been proven to help with chronic headaches? not sure if it will help me but its worth a try.
I have also been referred to hospital to have tests for ME due to fatigue etc
I have been in touch with the Meningitis Trust who have been great and have helped immensely, with their help I am now under going Cranial Osteopathy (early days) as well as having a support worker visit me in my home and listen and actually understands my predicament.
Knowing that there are other who are suffering in a similar way as I am is comforting as I felt as if I was alone in my own painful world.
I wish you well my friend and my thoughts are with you.
Hello - I am recovering from a very bad case of VM and I find I still get symptoms that feel like it is coming back again. My neurologist put me on Topiramax to deal with the intense headaches. It works but I wake up feeling like I am really drunk which is not a good thing while driving to work. Because of these side effects I asked for something else. He prescribed me something called "zonisamide" which has less of the side effects. Hope this helps you.
Hi Covenham, I had BM in Feb 2011. Pulled through despite my brain haemorrhaging out through the sinus. I am left deaf in one ear and have since been diagnosed with general neuropathy and Sjogrens . I continue to have headaches and find these are frequent when the season's change here in Canada. I have been prescribed noretryptiline, an anti-depressant that blocks nerve pain as I cannot or will not take meds that mess with my already messed up mind. I find that Indian head massage helps.It hurts like hell when it is being done but 2 days later I get good relief. I do not fill my schedule, in fact, I have become quite lazy and I don't care! I do what I can when I can without any guilt. I have lost relationships that I thought I could count on when the chips are down but I was wrong, won't be the first time or the last. I lose my temper and refuse to accept any nonsense. I am kind to those who are kind to me but I have no energy or patience for a lot of the BS that's out there. Best wishes and kind Regards, Jeffery
Ask your neurologist for a blood pressure medicine. My neurologist put me on a bp medicine and it has virtually eliminated my headaches. I am post aseptic meningitis from December 23 2012. Up until about 5 weeks ago, I was taking 6-8 tylenol per day. Now, I don't take any since starting on the BP medicine.
Yes, I developed very severe migraine headaches after having Bacterial Meningitis and I took prescription Tylenol with codeine for many years. Gradually with time my severe migraines have subsided.
Yes I have as well. Currently in hospital getting treating with lignocaine infusions for 10 days to calm it down and then onto home with ampitriptyline at night. How are you now?
I am on Topamax, the same one you are on, and Amytriptyline, both as migraine preventers. I don't know how they work. I don't want to go back to before them. Now, I have migraines about 20 days out of a month. Before was 30 days. I also take meds to stop the migraines, and the nausea. Your doc can prescribe these for you too.
I had Bacterial Meningitis in September 2011. I don't know why or how I got it, just that I did. Mine was almost fatal. I was 36. I'm very lucky to still be here. I focus on that when the pain gets too bad.
Good luck with getting your symptoms settled. One thing I'm going to be doing again... is trying Botox injections as they are considered a gold standard at getting rid of migraines. I don't know how I feel about injecting botulism into my head/shoulders to get rid of migraines from meningitis. Fighting one disease's leftovers with another disease. I just don't know. But, if it works and doesn't kill me, I guess it will be okay. I guess?
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