22 months post vm 35 female: So glad I found... - Meningitis Now

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22 months post vm 35 female

So glad I found this forum. I got sick August of 2015. Little did I know what exactly would play out. I started with mono and continued to deteriorate which led to diagnosis of vm and 9 day hospitalization. I'm in the medical profession and am in awe of lack of information regarding recovery from vm. I have not returned to work since illness and have "residual effects" . Head pain, prior to this illness I've experienced migraines and what I'm left with I call head pain, starts behind left eye and it is unreal, intolerable pain. I hear migraine and wince as this is beyond that. Photosensitive, nausea and vomiting. And not to be gross but the amount and force of vomiting is quite something in itself still. Memory problems are very frustrating and life as I knew it is on hold. My gp is fabulous and has truly tried to refer me to specialists for consult. Because I am a nontrauma injury and not acute referrals get sent back. I am seeing an osteopath on my own accord of trial and error test. My dura remains inflamed. I tried many meds amitriptyline 75 mg daily , propranolol Hcl 80 mg daily and of course my prn meds ibuprofen, Tylenol, Dramamine. Even before 75 mg dose of amitriptyline I was left with extreme exhaustion. Sleeping is a challenge and to wake feeling rested has not happened since prior to illness. Ct, MRI all clear. I nap frequently throughout day. I was a very active young female, multitasking was my forte. My coping skills and ability to multitask are gone. I'm easily overwhelmed, I avoid crowds, loud noises bright lights. Even dining in busy restaurant with low light can exacerbate my symptoms. So there's probably more I can add but to give you an idea this should do it. I'm looking for suggestions, someone who has experienced same or similar problems. I've seen neurology, and was diagnosed with 2 things, post infectious chronic fatigue syndrome and the other I'd have to look up. Any support, advice would be appreciated.

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I'm sorry to hear that you are still suffering but if there is any comfort in knowing this, you are not alone. I'm 18 months post VM & whilst I returned to work after, I had to take time off 6 months post VM as I was so tired & like you had memory & concentration problems. I still sleep for at least 90 mins every day at about 1pm in order to get through the day. I've tried everything & spent an amount of money that I'm embarrassed to disclose on trying to get better. I've had so many blood tests, food intolerance tests, detox retreat, health retreat, CBT, seen a nutritionist, regular colonics, adrenal massage and I eat totally clean. Organic, a diet packed with healthy food & at least 2 litres of water a day. I have B12 injections & Vit D, Zinc & probiotic supplements as my tank was deplete. All this and still I'm tired & diagnosed with CFS/ME. My consultant has told me to stop throwing money at trying to make myself better. It will just happen when it's ready. Like you it's super frustrating. I was a corporate city career girl with a high level job but I'm currently off work. I'm worried I'll never be able to do my job again. I'm just not the same person. Anxiety ruled my life but I've learnt how to deal with it through CBT. It was bought on by the VM. Panic attacks & emotional weakness, i seem to sob at the silliest of things that stress me.

We will get better but guess it just takes longer than we wish it would.

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I can totally relate and thank you so much for your reply

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I can completely relate to how you are feeling. I suffered from VM In October 2014 and like you had many residual effects- fatigue, crippling headaches, sensitivities to light, sound, busy environments. I was a primary teacher and tried over a period of a year a number of phased returns but sadly each one failed as I just couldn't cope. All of my symptoms would intensify and I suffered anxiety something I had never suffered before. It was simply overwhelmingly! Eventually my school ended my contract due to my ill health so I lost my job. Again like you, I tried different meds like amitriptyline,propranolol and Gabapentin but they didn't really help. Last year I saw a neurologist and was diagnosed with chronic migraines as a result of VM, I now take Topiramate which helps a bit, still get daily headaches but not as bad and full blown migraines with pain behind left eye not as often or as severe. I have also been diagnosed with chronic fatigue syndrome again as a result of VM and went on a course to help to learn how to pace yourself ( not easy!). I don't know if they have anything like that near you. Some of it was useful and it was a group session so it was nice to meet other people experiencing the same feelings if fatigue. Finally after developing some new symptoms last year, I saw a rheumatologist this month and have been diagnosed with fibromyalgia as well. VM is an illness that just keeps giving! So I am unable to work and I do miss my old life but I manage to stay positive. I know it is hard but you are definitely not alone. Take care.

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Thank you so much for your response. In my 22 months post illness I've been looking for people who have experienced what I had and am left with. I wish you all the best. You're right it just takes time.

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I don't know if it would help you but I spoke to a cranio sacral therapist last week who is treating a woman with ME & fibromyalgia. She is gradually regaining her energy & feels much better with each treatment. I've not been yet so can't comment personally.

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I'm so sorry to read everyone is still struggling with these symptoms, I can't believe how similar the symptoms are to what I've been dealing with - I thought i was alone in this! I too had mono a while ago. My VM symptoms started on April 28th with SEVERE head and eye pain - and when I say severe I mean I couldn't even move or speak. I was vomiting like never before, any kind of bright light felt like it was burning my eyes and I felt delirious. Half because of the pain, half because my temperature was so high and I couldn't cool down no matter what we tried. Me being me pushed myself and didn't see a dr for a few days as I brushed it off as being some kind of headache. (I knew it wasn't but I didn't even know viral meningitis existed at this point and the thought that it may be a bleed didn't even cross my mind) It is now almost 9 weeks later and I am still struggling with recovery. I haven't left my house since the symptoms started, other than the first few days when I was adamant I would be okay and since then only to hospital and dr appointments and even they take it out of me. I come home and sleep for hours and hours after only leaving my bed for a very short period of time, just being a passenger In the car makes me want to crawl back into bed. When I first went to A&E it was following a call to 111 who told me I needed an ambulance immediately as I told them I had fainted from the head pain. This surprised me and made me in complete denial of what I may have had, and so I decided to just have a family member drive me there so as not to cause a scene. When we arrived, they didn't care about how much pain I was in or that the florescent lights were unbearable for me. I wore sunglasses, and still don't know how I managed to keep a straight face when the woman on the reception laughed about me wearing them indoors and said 'have you got a migraine or something? I was wondering what those glasses were for!'. This kind of treatment was how my experience in A&E continued. I was in there for 13 hours and had been given nothing other than a tablet for migraine which came 6 hours after me arriving and of course didn't do anything. They told me there were 'more poorly people' there, despite me crying in pain, cradling my head from the lights, throwing my guts up and having no energy to sit up properly. I ended up going home at 4am after arriving at about 11am the morning before because I couldn't cope and headed to the GP the next day with advice from one of the nurses there who told me I wouldn't be seen by a Dr at that point anyway as they were so busy. When I left A&E I burst into tears because I felt so helpless. My initial conversation with the Dr in A&E after I arrived was that I needed a lumber puncture immediately because it might be meningitis, or I may have had a bleed but after that I wasn't seen again other than for blood pressure. I went to the GP and their response wasn't much nicer. I was told by the receptionist when calling for an emergency appointment that 'if the dr's really did think you had meningitis or a bleed on the brain they would have kept you in, so it can't be that bad'. Eventually I got an appointment, and as exhausted (emotionally and physically) as I was, I went there and he straight away sent me to a consultant for tests for Viral Meningitis, and then finally I had a glimmer of someone who took me seriously. It's a scary thing when you feel like you're not being treated properly or taken seriously when you know there's something wrong.

The last 9 weeks have consisted of lying in bed, barely eating and being sick anything I do eat or drink which has made me weak. I am unable to even tolerate normal volume on the television to keep my mind busy. I am noticing memory loss and memory issues (which I mentioned to a different GP and she thought was amusing? I don't know why memory loss is amusing. Perhaps she didn't know what to suggest) Extreme fatigue and fainting if I try to push myself to do normal activities. I have had (I know it's gross) very violent sickness every day for almost 9 weeks and have lost a stone and a half. Anti sickness does sometimes ease this a little but I am still being sick. This routine has resulted in vomiting blood, maybe due to the NSAIDs. The pain in my head is constant, and nothing seems to ease it. It started worse in the front of my head, and worse over my left eye. I still get this pain in the left side and in my actual eyes but the main thing that bothers me now is pain in the back of my head. It feels almost like pressure, as though someone is pushing on my head and the pain is horrendous. At times its so bad I can't even bare to lie with my head on the pillow. Noises make me stressed out and in pain, I have no stamina to even walk around normally, and I am crazy tired but find it hard to sleep due to anxiety. I find myself trying to do little bits and bobs in my own bedroom and then wake up 5 hours later in the middle of the clothes on the bed that I was simply trying to fold. I have found codeine and diclofenac ease the pain slightly, but they now won't prescribe anti inflammatories because of my stomach. I was prescribed amitriptyline by a neurologist who was very caring towards me and appreciated that I needed to wear sunglasses in the brightly lit room we were in. He suggested it was migraines caused by viral meningitis but wasn't 100% sure as I have all the other symptoms we're all mentioning also. I haven't taken this as I was prescribed it for a broken hand once and my body didn't like it. My temperature has also been fluctuating, and is often over 39 degrees. Depression, anxiety and irritability is something I'm now dealing with pretty badly with too - I think it's the constant pain in my head and the inability to live life normally. I'm quite an impatient person and wish I could just spring back into the old me. At first though I didn't even have the energy to be irritable, so maybe in some warped world this is a positive. Reading posts on here have made me realise that there just isn't enough knowledge and info around about viral meningitis. From my point of view, Doctors aren't really sure what to prescribe and it's all trial and error/ process of elimination type situation until you find some pain killers that give you a little bit of relief. So sorry to hear that people are struggling so long after it all starting but from the bottom of my heart I hope anyone with viral meningitis or VM after effects make a full recovery and we can all leave this craziness behind us. I guess we just have to be patient with ourselves.

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Do not take anything with Codeine in it, it gives you a headache! Get Lansoprazole gastro resitant tablets so you can take Naproxen, its an anti inflammatory I'm on. I was given Amitripyline & not told it can knock you sideways for weeks before improving.

Although I wasnt mocked in A&E my experience was similar & wrong diagnosis "severe cluster headaches" apparently & drugs administered up my nose and no lumber so no formal diagnosis. This meams battling for recognition and understanding since.

I've lost all faith in the medical profession.

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The other diagnosis I was given by internal Med specialist was systemic exertion intolerance disease. Not sure if any of you have experienced facial twitching, mainly eye. This started mid illness for me and how I explain it is it feels like I'm about to have a seizure. Luckily to my knowledge I have not seized. I'm also left with bladder problems which presented early around time frame I got initially diagnosed with mono. At times I am unable to void and when I can my bladder does not empty. My urologist has diagnosed me with neurogenic non neurogenic bladder.

I awoke to all of your responses this morning which brought me to tears as this is the most comfort and peer support I have received to date so thank you to each of you. The unknown is much less scarier because you have shared your stories with me. I too have anger issues as a result of the change in lifestyle. I am sure you can all relate when I tell you that I look fine to surrounding ppl. I physically look fine and although I am far from it people don't understand what we are dealing with. I am very grateful and lucky I am still here there are indeed many others worse off. I have been following "head injury protocol" because the symptoms I have are very similar. If any of you do not or have not seen an osteopath I highly suggest trying this. She focus on my head and neck, I have gotten a bit of reprieve from severity of head pain by seeing her regularly. Just a thought. Are any of you located in Canada?

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Wow. We do have very similar after effects. I'm also heat intolerant and I remember vaguely early recovery days like you mentioned above. I was given two mini fabric rice bags to use as ice packs. I use these placed on my eye area to attempt to ease severity of pain. I understand the head pressure and I always described it like a headband with my head was so tight I felt my head would explode. I quickly learned that uncontrolled head pain lead to vomiting. I hide from sunny days and when I have head pain I prop myself up on 3-4 pillows to almost sitting position with meds to try and get rid of head pain. I have sat in shower floor with water coming down over my head as an attempt to lessen head pain.

We will keep in communication I hope.

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It has taken me 3 years post viral meningitis to get back to normality and I still get fatigued and have sleepy days. The advice I would give is take it easy and rest it out and things will improve. At the 2 year mark I could do gentle exercise like swimming and walking and this helped. I eat superfoods which help to fuel energy.. green smoothies, nuts, seeds, fruit and veg. I drink turmeric , hot water and honey, black pepper and a tiny amount of coconut oil to help the inflammation.

The tolerance to light and noise improved around the 2 year mark and I now can go to rock concerts and I am ok with light now.

I recently climbed Mount Snowdon which I did easily so I was pleased to get back to that .

The best advise I can give is: be patient, do some gentle moving, eat healthily.. green stuff, aloe juice, turmeric, vitamins, vit B12 helped me. Get some decibel reducing ear plugs.. life saver , you can hear talking whilst reducing other noise, get some dark sunglasses and slowly do things but also take lots of rest. It will improve but it will take time .

Hope this helps . X

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I had VM in 2014 and had the symptoms you describe. Over time these improved.. it took 2 to 3 years for the inflammation to settle. I still have chronic migraine but it is less intense , less painful than before.

Acupuncture helped the chronic fatigue and I eat a super food diet.

I work for 1.5 days now as I still get tired and some days I feel sleepy , this is linked to the migraine .

However I can now exercise, listen to loud live music and I can tolerate most social noise. I used ear plugs, the decibel reducing ones for a long time. I recently climbed Mount Snowdon so there is light at the end of the long tunnel.

The best thing I did was to stop taking amitriptyline as it made me very drowsy and didn't make any difference to the pain .

I have also taken a couple of training courses over the past 12 months to use my time to do things I have always wanted to do but didn't have time for.

I would say I am 80% recovered now so I can do most things I want to do it is just the migraine and tiredness that slows me down so I take each day as it comes.

Hope this helps x

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Hi

I have a very similarly experience. I’m 38 physically active, busy mum, self employed business owner. Like you, multi tasking was 2nd nature.

I became ill in Feb 18, was in hospital for 8 days.

Residual effects, memory loss, lack of confidence, lack of concentration. Head aches.

I’ve been unwell again now for almost a week and I’ve been back to the Dr today, she suspects the VM is back, albeit much less severe. She hasn’t admitted me just sent me home to rest.

Feeling really fed up!!!

Sorry not much help to you but sometimes nice to know you’re not the only one feeling that way.

Take care.

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Hi glad you’re reaching out. Sorry to hear that you’ve had reoccurrence, that remains my biggest fear. I’m post VM now 3 years and 1 month. I still have residual effects present such as memory, concentration, head pain, fatigue. I’ve been on propranolol (beta blocker)for quite some time which has helped with headaches however contributes to fatigue. I find even now if I get over tired my symptoms are worse, if I get dehydrated my symptoms get worse. Rest is still a big part of life for me and without adequate I don’t function well.

Because of very little information on managing post vm it’s trial and error.

Take care of yourself. Don’t push your limits. Just because you got sent home doesn’t mean you can’t return for reassessment should symptoms you’re having change. Best of luck to you, chin up.

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