Viral meningitis Support?

[nick_simpson19]

Hello Everyone,

Its so comforting to read that its not just me that is suffering with the after affects of VM. Ill tell you my story in a few words as possible.

1. Suffered from headaches, high fever, confusion, dizziness etc

2. Came home from work and my wife said you need to go to hospital.

3. Went to A&E doctor took bloods and temp which was at 39c, My bloods showed a inflamation infection in my body. Painkillers controlled my headache so I was comfortable.

4. Doctor in A&E told my wife that she suspected VM then she told me that I had VM.

5. Submitted to ward were they took my water sample and found a water infection.

6. Pumped me full of IV antibiotics every few hours.

7. 2 x Days later CT and Lumber Puncture were take and came back clear. Once the lumber puncture was clear they discharged me from hospital with a water infection. (No Mention of Vm on discharge notes)

8. Visited GP around 4 times in a month tried to tell me my headaches were due to TENSION! Prescribed me amtrpyline to try and relax me prior to sleeping (it helps me sleep but I still awake with headache) I was off work for almost 4 weeks.

9. I had a ENT appointment booked due to small obstruction on nasal septem this appointment was yesterday and I kinda pinned my hopes on it being something in my nose. Everything was fine and I was discharged from ENT

10. So I was back at square one again so tonight I rang meningitis trust and spoke to them as the "clear spinal tap" had given me confusion. They told me that the chances are the spinal tap would be clear as the IV antibiotics would of helped kill of the virus so she was not surprised things were clear. She was also certain that I have had VM and are suffering with the after affects. Like the nurse said to me on the phone you have to set your expectation with your doctor as they cant really do much for you.

My worst after effect symptom is my headaches on my left hand side I can almost pin point were they start but if I leave them my headaches seem to take over my body! I can control them taking pain killers pretty regularly like now its 23.26 i took my last lot of pain killers at approx 17:00 and my headache is starting to come back strong and i know if I dont take painkillers before bed Ill wake up with a bad head in the morning!

I know my symptoms and my story are not as bad as some I have read. But it really gets me down having constant pain in my head!

What did you guys all do to help relieve your headaches? As I'm willing to try anything?

Hope someone can give me some pointers.

Thanks for reading my post and thank you for your support.

Nick

[siobahn]

Bless your heart nick I really can relate to, I was diagnosed with vm in sept 2009 and told to go home and go to bed, things became so bad I went to hosy unfortunately they messed up there..long story.....i suffered with debilitating h aches for over 3 years but the initial pressure was almost too much to take I felt my brain would surely burst..... It was 3+ years goin back n forth to doc complaining of giddiness , nausea almost constant, travelling in car/ tube was awful..but to no avail.... I was eventually sent to royal hospital for neurology London where I saw a doc but the point I'm trying to make is the nose thing as I had congestion etc in my nose which had showed on brain scan initially, he said it could b a result if herpes simplex encephilitis which will cause all the above but will stay in nose as the scans showed... I'm not sure if this was the case but just sharing... As for the headaches I must admit mine only subsided after lp 3 years after even though my fluid pressure was normal... I also drunk lots if skimmed milk as hydrates the body more than water! It worked for me no h aches after lp and to date... Only slight... If any.

Deep breathing ( pranayama) also helped immensely but slowly does it. Also mindfulness meditation...

I hope thus helps in some way...

Sorry if long winded, not so good these days at writing just say what I think!!!!!

Warm regards

Siobahn

[rbwazmotown]

Hang in there Nick. Your symptoms sound exactly like mine. What I have been told time and time again that time will help the symptoms go away or be less bothersome. We are in this fight for the long haul, that's why this blog is so good. It reminds us all that we are not alone. Take Care.

[siobahn]

Water infections or constant uti infections or just for overall health check out alkaline diet... Alkalising the body really helps.

X

[nick_simpson19]

Thanks for your support. I will try the breathing but the meditation doesn't sound my cup of tea.

I find it odd but when I cough I have a shooting pain in the area that hurts? but its on one side on the left hand side but I f i dont take pain killers it spread to the back of my heads and kind of knocks me out.

its the relying on painkillers i dont like

Thanks for your support I know I'm in for the long road now and speaking to like minded people really helps.

I had a good chat with my manage today to make him aware of what things were going on but I didn't want to be labelled with it and I don't want people to judge me differently in a working environment! I work for a world leading company in a consulting type of role for immediate line managers and often more senior managers!

It can be quite demanding at times and I would like to think I'm a fore front of all big change within my organisation and I wouldn't like that to change because I have bad headaches and bad days every now and then.

Luckily I have a very supportive company and a big occupational health department so I will be booking an appointment with them to discuss what they can do for me.

I apologies if everything is coming off my chest I feel like its the first time I can talk freely about it without being judged. I even think sometimes people think im lieing because in my appearance i look quite normal to them.

Cheers for your kind words

Nick

[ShannanLouise in reply to nick_simpson19]

Hi Nick. It's great that you're well enough to go back to work and that you've got support there. I'm into my 10th month of incredible head pain and unable to work at all. I can't even get into a car or a train as the vibration and noise sends the pain soaring. No painkillers have worked for me and we've tried everything! My doctor is now trying me on High Flow Oxygen. This therapy oxygenates the blood with 100% oxygen at a continuous rate of 12 litres per minute (for me. Others may be prescribed different flow rates or different time sessions) I use it twice daily for half an hour each time. It doesn't address the pain, but it does seem to be aiding the healing process. Maybe worth a try for you?

It is tough for us as we do look normal and healthy! I get similar reactions from friends who are astounded to see me looking well physically after such a long ordeal, but the pain shows on my face and particularly around my eyes. I hope you feel better soon - this is a long road....

[Meningitis2011]

I missed my appointment with my infectious disease doctor and have rescheduled it for December 5th. Hopefully I will get some answers about my long term problems from herpes viral meningitis. Headaches is only one of them. They are not severe but always make me feel sick. Nothing really helps mine. I have other problems too that are not related to HVM. They don't keep me at home but I can't say I ever feel good. Good luck to everyone who has to suffer from this terrible disease.

[siobahn]

Nick I'm very much with u on the lookin ok on the outside but struggling so much on the Inside, I also found this difficult to deal with, it's a case of u no you are poorly and trying to make the best of it is all you can do.. I felt I'd just been left to get on with it and for most part I have...

Look at engaging with headway in your area, they are fab... U can offload & get the support you so need...

Oh and the meditation thing, I promise u don't need a mountain just a quiet room, sitting comfortable & being conscious of your breath, being in the now. Forget past & future....... Just b

[ShannanLouise in reply to siobahn]

Siobahn. It is tough when those of us who've been so ill appear to look well yet are feeling dreadful, lost and isolated even when surrounded by loved ones who care. I developed meningitis in March 2013 and then pneumonia. Severe head pain for 5 months. Unable to walk. Couldn't bear bright light or noise. Had to remain indoors in a dark room with no sound. Any sunlight or heat on my head made the pain soar. Unable to watch TV or listen to music or radio. After 3 months was able to read again, but nothing else. Only now, entering my 10th month, am I able to cycle and swim gently, but there's no way I can lead a 'normal' life in spite of looking well and healthy. The pain in my head is crippling most of the time. I have just been put onto High Flow Oxygen by my doctor. It doesn't directly address the pain however high levels of oxygen oxygenate the blood which aids the healing process. I am gradually feeling slightly better some of the time. I know it's going to be a long haul, but this does seem to help and might be worth a try. Having something like this has helped me to remain cheery and optimistic as prior to that I was just struggling to deal with it on my own as now pain-killers touch this pain. The very best of luck and wishes with your ongoing healing process.

[siobahn in reply to ShannanLouise]

Hi I'm so with u on this, I am 4 yrs post vm and I'm still struggling with stuff... The frustration at times is unbearable, lets face it who can understand how it feels if they haven't been through it! So that's why for some reason we find our way here to get the support that is so needed.... The doctors do there job but in my case I have been let down quite badly from the onset if I am honest... I can harp on about that til I'm blue in the face and believe me I have!( In my head mostly)but it hasn't got me anywhere... After the initial first few months of hell I started having joint pain which was unbearable shoulders, hips, wrists, fingers, neck etc it was awful, not long ago I messaged someone on here though I don't remember who , they were saying they had the same symptoms, I encouragingly said I also had that but eventually subsided as I had been told this was a symptom after vm and the virus was making it's way out if the body... Well I ate my words, the last 4 weeks I've had shoulder, wrist, hip, finger joint pain which has Been just awful, that bad I think I nearly lost it! Privately..... Then outwardly I just couldn't take anymore I've been ill for 4 years and still not right... (I Do hope this will not b the case for u) we are all different.. But u no what I haven't been to the docs as I'm sure they just think I'm nuts, so where do I go what do I do..... I just get on with it like I have since the onset... I would like vm to b heard more as I read these posts & over & over again I hear the same thing but still no answer..... So with love I say to u it will b a long process & frustration & anger will raise its ugly head but just take each day & when the days do seem unbearable post how u feel there will always b someone to lend an ear..... I wish I had the answers I wish I could make every doctor in the world sit up & listen !!! We can all live in hope...

Keep

[siobahn in reply to siobahn]

Smiling as hard as it can b at times as you never no what tomorrow will bring

With love

Siobahn x

[ShannanLouise in reply to siobahn]

I'm so sad to hear you've had such a dreadful experience, both with the pain and with your doctors. Thank you for replying and let's keep smiling

love,

Shan x

[ShannanLouise]

Hi again Nick. It is terrible to have constant head pain. I sympathise with you as I'm now into my 10th month of unbearable incessant head pain. You are lucky - the painkillers work for you. Nothing works for me and we've tried every medication (apart from opiates which I'm not willing to take). My doctor has prescribed High Flow Oxygen which helps speed up the healing process in my damaged brain. It may be worth discussing that option with your doctor. To me painkillers just mask the symptoms whereas the oxygen is directly addressing the core problem. Hope that helps