The WORST illness I've EVER endured!!! - Meningitis Now

Meningitis Now

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The WORST illness I've EVER endured!!!

Going_To_Get_Thru_This profile image

I was just diagnosed with Viral Meningitis approximately 2 weeks ago. :( After 1 day from returning from a short vacation trip, I began to have a piercing headache that just didn't seem to want to go away. So I went back to work for 1 day and took lots of IB Profen & Excedrin all day, but it just wasn't cutting it. That night I began to have chronic head pain, constant vomiting, and shaking/chills like never before. At that point, I knew something was terribly wrong. I had my Mom take me to an Urgent Care the very next morning. There they gave me Zofran for the nausea and sent me directly to the ER. I thank GOD for the ER Dr's in that they were proactive in testing me for everything, including Meningitis, and doing a CT and Lumbar Puncture, instead of sending me home with flu-like symptoms. They immediately placed me on an anti-fungal and an anti-viral medicine through my IV, even before they had the results for VM. That day, May 1st 2013, I was admitted to the hospital and stayed there for 6 straight days. I have to say that they were the worst 6 days of my life!!! I was constantly throwing up with excruciating head pain and extreme sensitivity to any noise or light. I kept the lights off & TV off the majority of the time, because I just couldn't handle them. Before I was released from the hospital, they implanted a Picc Line in my arm, so that I may continue to receive treatment while being in the comfort of my home. I was told that I will need to be on the anti-viral medicine, acyclovir, for 21 days total. So I have to go to an Outpatient Infusion Service place every single morning to have my medicine bag changed out, as it is connected to a pump and only lasts for 24 hrs. I am so happy I have this option, cause it beats being in the hospital or going there 3 times a day! I'm still on the acyclovir and have about 4 more days left. :) My days are still rough. Some days are better than others and when I do have a good day, it seems I then get compensated with a bad day. My headaches tend to come pretty consistently and my nausea seems to be getting a little better. Of course, I am taking Zofran and I'm also on Lora-tabs for the pain. The problem is that these have caused major constipation, and now I'm taking probiotics, stool softeners and vitamins to try and keep my BM's moving. I am ecstatic to have found this site and it is extremely comforting to see others having gone through this....... Even though I would not wish this on my worst enemy!!!! Any advice as to what things I can do to help suppress the effects/symptoms is GREATLY APPRECIATED!!!!! I am obviously still in the wee stages of this illness and I honestly did not realize the extent or the aftermath of it, until I saw this site and read some of your stories. Thank You for hearing mine. :)

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12 Replies
ignoreit profile image
ignoreit

Eat lots of high fiber foods! Lots! Much more than usual! Several bowls of high fiber cereal (check the labels and buy the ones with the highest fiber) everyday. Lots of high fiber foods will help tremendously with your constipation which is probably caused by the antibiotics.

siobahn profile image
siobahn

Going to get thru this!

And so you will, it takes time, slowly slowly and you will get there.

Thinking of you

Siobahn x

chrisdunn profile image
chrisdunn

I had VM in December 2011. It was the most frightning time of my life. You will get through it but I am afraid it will be hard and take a long time and will leave it's mark. Take plenty of rest you will be VERY tired. I was off work for about 5 weeks but it was a stuggle, take as much time as you need and can afford. tell people what you have had it will help, trust me! When I left hospital the Doctor said :

You do not yet know how ill you have been

You do not yet know how ill you are

You do not know how ill you are yet to be

He was spot on.

You will get better, It will be hard and take time. Sorry if this sounds negative but this is a very scary illness and you must understand just how lucky you have been. If you want any more help please contact me or check out the wonderful people at the Trust.

Going_To_Get_Thru_This profile image
Going_To_Get_Thru_This in reply tochrisdunn

Thank You so much Chrisdunn. I'm learning more and more about how serious and extensive this illness really is. The doctors never give you enough information. I have found out more info by reading online and from the personal testimonies on this site. I have never felt so fatigue and helpless in my life!!!!! This is definitely one heck of a learning experience on being forced to count on others and not being in control AT ALL!!!!! So far, my head pain is still very consistent and when I think I'm having a pretty good day, I then have a really bad day. So I'm just taking things day by day and being thankful that I'm still here. :))

Vespalover profile image
Vespalover

You must have had the Zosta virus if they are giving you Acyclovir. I had VM and it was the 'Shingles' virus (Zosta Varicella) that got into my spine. I like you was in hospital for 7 days but when I left I was on the Acyclovir orrally.

Like you, a good day followed by a bad day. My trouble was that on a good day I would be a little more active (got out of bed not running or anything) and that would give me a bad day. You will not know what is too much untill the next day.

I had a daily nap for 6 months. It was the only way for my brain to rest as just watching TV was too much stimulation.

I had a friend who owned a Head Injuries Hospital. It was she that jerked my chain and told me that I was very seriously ill and nearly died and that it will and SHould take me 6-12 months to recover.

Understand that your brain has been injured and it can only recover if it is imobalised so don't do too much reading or scrolling on your computer or have too many friends over because tracking what they say and listening will be had work for you at the moment. You may be more forgetful and shorer tempered.

Be undestanding of yourself. Rest and you will recover. It will take time and you will get frustrated.

My thoughts are with you.

Ana

Going_To_Get_Thru_This profile image
Going_To_Get_Thru_This in reply toVespalover

Hi Ana (Vespalover),

Although they did not mention Zosta virus, the doctor did describe my illness as having shingles in my brain, neck and spine. Majority of my pain is in my head and neck. The type of Viral Meningitis I have is more rare and I was told that I fall into a 4% category..... It is also more severe. I did not realize how serious this illness was until I started reading online and read the stories on this site.

I had just experienced doing too much the other day by having company over and then having a horrific day the day after. So I definitely will take your advice in taking things very slowly and trying not to do too much.

I've also experienced memory loss and forgetfulness already. It scares me and I'm concerned that that function of my brain will not return to its normal state again. It's very frustrating at times and I have to continue to remind myself that I've been through a lot and just need time to heal.

Thank you for your advice and feedback!!! It is greatly appreciated!!! And I am so thankful to be able to relate to others that have already gone through a similar disaster/illness.

paul1224 profile image
paul1224

i hope you are all getting over what u have add

for what it is worth i had bv with septicemia 9 years ago and i am still suffering badly with it after all this time

all have a great summer

Tiga profile image
Tiga

Some days you will feel better but do not push yourself to hard

My headaches can be helped by rubbing vic into your temples

nausea can be helped with ginger beer or peppermint tea

major constipation go to your GP may decide to combine different laxatives.

vitamins c and B6 and B12 can help

stay out of direct sun light, try and not get to hot, eat well and rest

or as i like to say baby steps

chrisdunn profile image
chrisdunn

Interesting reading the comments. It took me a very long time to realise that I had had a brain injury and like any damage to a part of your body it is never quite the same again. I am currently having problems with depression and some rather unpleasant feelings which I am off to the Doc's to talk about. However, these may have nothing to do with the VM. I still also fall asleep in front of the TV!! Stay strong you have SURVIVED be happy with that but just try to take on board how ill you are.

Tiga profile image
Tiga in reply tochrisdunn

depression and unpleasant feelings i personal feel are the after effects of VM, as i read and listen to people who have the same effects, if you have time have a read threw this web site depression.about.com/cs/die.... you are half way there by going to the Doc, but if they do not give any answers, maybe vits are the way, i had to do that, as i went to many dark places, and felt depressed all the time, GOOD news, all ok, ok have the odd moment, but nothing as i used to. good luck hon

Vespalover profile image
Vespalover

Hey Going-to-get-through-this,

I had a chest pain which took me to the ER. They discovered a wee spot on my right breast on my bra line which I though was a bug bite. The Dr diagnosed me with Shingles. Within a week the Shingles transfered itself to my meningis. I had the stiff neck and the shingles rash spread across my chest and right shoulder blade. I was hospitalised for 8 days and sent home on pain meds and Acyclovir.

I was bed bound for about 2 weeks and within 6 months could work but had to go to bed by 9pm and still had relapse headaches every couple of weeks. Within 9 months I could stand exercise which use to give me a bad headache.

I was told only 0.5% of people have Shingles that turns into meningitus.

Remember shigles is a virus so will raise its head if you are stressed or run down and you must drink lots of fluids to flush the virus from your system. I found I was really thirsty all the time so drink lots.

Good luck and try not to do too much. You will get better, You will slowly improve, you will get frustrated, you do have folks that have been there and will listen. xx

vasco profile image
vasco

reading your comments, i get jealous of all of you. i was not as lucky as you lots are. i was misguided by the ambulance crew i called to rush me to the hospital. they told me that i was only having flu. i believed them. but went into comma a couple of hours afterward. was unconscious for three weeks, hospitalized for eight months. i have suffered a lot of disabilities that will live with me for the rest of my life. i kick myself everyday for believing the paramedics. i have paid dearly for being a fool.

you all are lucky. you all are conquerors. you all are heroes. you all will be fine

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