Bacterial Meningitis headaches... - Meningitis Now

Meningitis Now
5,662 members1,880 posts

Bacterial Meningitis headaches...

kissbeatlebuddy
kissbeatlebuddy

I was wondering if anyone could give me some feedback of my wife's recent bacterial meningitis battle:

She spent one week in intensive care, four days in the regular wing of the hospital, and has been home since October 21.

Our concern is about the feelings associated with the headache post-treatment from the hospital and dizziness.

She generally doesn't feel like herself. She has days of varying headaches: most days are migraines, with no particular stimulus that is a specific trigger.

Quite often, she comments that she feels "hollow" or having a feeling from the chest up, that comes and goes, of a severe, paralyzing pain. It goes from the chest to the top of her head.

The dizziness makes her world swirl around her while she is up and about. Today, for example, was our grandson's pre-K Thanksgiving Day luncheon; she was dizzy, fell on her bottom in the school's cafeteria. Her blood pressure was high, so she took part of her high blood pressure meds and some most of her other meds. She was NOT prescribed anything for the headaches by the hospital upon discharge, or her physician during the follow-up.

Can anyone relate? If so, what do you do just to get by, or feel better? We do understand that time is the biggest factor for the meningitis to heal, but we would also like to know what we can do until said time comes.

Thank you for your input, friends!

21 Replies
oldestnewest

Wow, I can't believe she was able to go out to a public function after less than a month after she was first admitted with BM!

I also was prescribed zero medication upon release from the hospital. I've noticed, from this meningitis website, that "no medication upon release" is pretty standard.

Re her headaches, are they pounding or NON-throbbing? Mine are NON-throbbing and I've found that the best medication (in the U.S.) is Excedrin Extra Strength or Goody Powder. Goody has less caffeine so I take it (instead of Excedrin) if my headache comes on at night.

Hope this helps!

Hello. I'm so sorry to hear of your wife's recent BM and ensuing head pain. I had BM (along with pneumonia and pleurisy) in March 2013. After that I had about 8 months when the head pain was so severe that I couldn't get up, couldn't bear any daylight or any sound whatsoever. For a further six months I couldn't walk because my heels hitting the ground sent pain into my head. Over the last few months I have very very very slowly improved and can now walk most days and am able to bear daylight (although I still cannot have any sun directly on my head, can't go in cars because the vibration sets off the pain, can't use a phone or watch tv or listen to radio/music.). This is a very debilitating illness. It sounds as though your wife has a strong system to be well enough to get out and about so quickly so do congratulate her on that. It is easy to feel low so encouraging her is important. I have tried a LOT of things to get the head pain down, some of which might be worth you trying.... ice-cap to cool the head, acupuncture, floatation tank, swimming, Gabapentin (no drugs worked for me but it might be worth your wife trying as everyone's different), massage, meditation, listening to healing frequency sounds (look it up on YouTube - there's one by someone called Andulariah which is fantastically soothing)... I hope some of that might help. She needs support and to accept that she's been through a very serious illness and it takes time to heal.

With kind thoughts,

Shannan

Shannan...

Roxanne's sunlight issues are similar to yours...just the light creeping in the window hurts her real bad. Being in a car wasn't bad today, but she doesn't want to ride in my truck as the stiffness of the ride would have been too painful. Using the cell phone, tv, radio aren't too bad, but there's no sense of urgency to want to use them. I have tried some relaxation stations on Pandora Radio, but I will try the youtube recommendation!

Appreciating your kind thoughts and support!

Rob and Roxanne

You're incredibly fortunate that Roxanne is so well so soon. Simply to be able to stand up is amazing, but to be out at school functions would be impossible for very many people who survive meningitis.

Keep a hold of that strength. It sounds as though she's got off very lightly indeed. It took months and months before I could do any of the things she's doing. I'm so pleased to hear of her rapid improvements.

With kind thoughts,

Shan

I survived BM some years ago....... my after effects were not as severe as your wife's seem to be, and I'm not a medical expert. However some of the things she gets are similar to what I sometimes feel. I suggest the avoidance of stressful situations and no alcohol for the time being, the understanding of friends and family, heeding medical advice. Have a positive outlook and very gradually try to do the things you used to enjoy doing and be grateful you are alive, good luck Sorba

Sorba...

Fortunately, alcohol is a non-issue as we are not drinkers. Avoiding stressful situations is kind of hard with our drama-filled family, lol...

The professional medical advice is not "really" being sought...the people who have lived through it and can offer realistic advice is what we are searching for. If someone has had the misfortune of suffering through this is able to give better advice than someone who has not had this touch their lives.

Thank you for the time to reply and hope you heal and have a blessed day!

Rob and Roxanne

I survived BM some years ago...... the after effects weren't as severe as your wife's seem to be but I have had some similar symptoms. I think the best advice is to try and avoid stressful situations and alcohol for the time being. Have the understanding of friends and family. Gradually try and do some of the things you used to enjoy in very small amounts and be grateful for being alive! Good luck, Sorba

Hi

my sympathies...

My case was very like your wife's, with meningococcal B, 2 weeks in hospital,10 years ago. I didn't have a lot of headaches after, though I was always a bit worried when they did come. My main feelings were of sudden extreme exhaustion - I'd have to sit down half-way up the stairs, for example. I wasn't on meds for blood-pressure and on discharge was told to take paracetamol for head pain. It seems every case has its own symptoms - I guess it depends on which parts of the brain were most affected - my sense of taste/smell was odd for a while, and I lost some hearing, and emotional swings/depression are common. Yes, time is the main thing: I went back to work part-time after a couple of months, but it was 9 months before I actually felt fit and strong.

You can expect the intensity and frequency of these episodes to diminish with time, so that what is now daily will become twice a week, then once, then fortnightly, and so on, but always unpredictable and often with no obvious trigger. She could keep a daily note of things and you'll see a gradual improvement. Personally, I didn't really recognise how bad I'd been, always thinking, "hey, I feel 50% better than I did yesterday" and so after a month thinking, "Hell, I must have been poorly!"

Getting lots of sleep and rest generally is important, and I know I relied on my wife a lot to keep an eye on me and tell me to take things easy, not to take on things I'd feel bad about not being able to cope with. A lot depends on personality here, as well as family circumstances, so you're the best judge. She'll probably be tired and find making decisions difficult, so though she'll want to be consulted and informed, you'll probably need to take on things you maybe didn't before. Time will improve this.

The experience will also make you, as well as her, take stock of you life, ambitions, priorities, relationship.

Because the illness doesn't show on the surface (you don't mention septicaemia, so I'm assuming not) people will forget she's been ill, and will sometimes need to be reminded - you might need to do this for friends, workmates, even family. I had a diagnosis of chronic fatigue syndrome for a few months, and it was useful enough to have a label on it to say to people, rather than just "she's tired".

Hope some of this helps.

Martin

Martin...

The resting for her is kind of weird...she can try to lay down for a nap at 1 pm and still be trying at 6. Other times she'll fall asleep sitting up.

Nighttime sleeping is getting to be better now.

The taste/smell/hearing and the mood swings are "way out of whack", she just said. She's a light smoker, and shared with me that her vapor cigarettes taste like dirty cookies, so now it's back to the regular cigarettes.

During the day, I will shoot her a text while I'm at work to see how she's doing and we have a standing time of my lunch to text or talk on the phone.

We do have to remind our two daughters who live with us how debilitating this is. I hope that they recognize to be able to support her and help when needed.

She thanks you for the time and your sharing what you've gone through and your advice!

Rob and Roxanne

You're welcome. Chin up, all of you.

I'm 26 months post VM and my doctors still don't know what kind it is. For all the pain and suffering I went through I think it was BM. I had every test in the book,every one came up negative except for the fact that my spinal taps showed very high white blood counts which is not good. They eventually went down from 380 to 60 after 4 taps and 2 years. I was in the Hospital for a week with high fevers and extremely severe headaches. I had to give myself intravenous antibiotcs through a pic line in my home for several months. I couldn't walk up or down the steps in my home for 3 weeks,I slept 16 hours per day,it was brutal. I stopped the pain killers because of how they made me feel. I was taking tylenol and motrin to deal with the pain until my doctor told me I was getting rebound headaches from too much medication. Sure enough the headaches subsided a little to the point that I could deal with them. I still have headaches to a lesser degree but I still have them everyday and I have a buzzing in my ears and some hearing loss. When I look back and see where I was and where I am,its very positive. Hang in there and things will get better,rest when you can,your brain is going through a lot of healing. Even 26 months later if I push myself too hard,my body and head will let me know for sure. Listen to your own body,Best of Luck !!!

Bekele...

Thank you for sharing what you've gone through. My wife had 2 spinal taps...the first attempt failed, the second gave the BM results.

Positive feelings for and from her now...the time we have together is good..the support from folks like you and the others who've posted, are making her see the future is definitely not bleak.

The hearing loss is getting better, but the two grandchildren playing can drive her just nuts.

She is very in tune with her body...better than anyone I know...she is able to tell me things that the doctor has to do labs on to prove/disprove.

Thank you for the time, sharing your experiences, and the knowledge you've passed along.

Rob and Roxanne

Hi,

Sorry to hear about your wife, I hope I can give you some encouragement. I am 19 months post bacterial men. I was in the hospital 2 weeks, then had to recover at my dads for an additional 10 days before I was able to make the 3 hour car trip home. The first 6 months for me were the toughest. I didn't feel at all like myself, I felt like I was a stranger in my own head. It took 2 more weeks once I was home before I could walk unassisted. I had severe hearing loss in both ears (the right side I was pretty much deaf and I couldn't hear out of the left very well). I had some minor headaches which is weird because I struggled with migraines for several years before the meningitis, and now I only get them once in a great while.

What I'm getting to is how much better I am now. I went back to my very physical job 9 months later, I didn't think I was really ready but once I got back into it I was getting better. Slowly but surely my extreme dizziness subsided ( I still get it once in a while, but not often, usually when I've over done it). My hearing is also slowly getting better, some days are better then others. Your wife needs to take it at her own pace, have her pay attention to her feelings, and try not to push it too much. She will get better, beware of trying to remedy her after effects with pharmaceuticals, as I believe they can mess with the brains ability to heal itself. Remember, she had a severe brain injury, and the brain heals itself very slowly. Also, all of the strange pains, and muscle spasms have also gone away in time. God Bless you both.

Dynomite...

How awful to not even get to your own home for so long!

Being a stranger in her own head struck her...very familiar.

She was almost deaf at one point and that is now almost gone, but little things will set off the headaches from a gentle reminder to screaming in fractions of a second!

She is resting as much as possible, but everyone in the house visits her and we do rely on her so much that sometimes rest can be hard to come by.

I read your post to her and she is heeding all advice given.

Thank you for sharing and Blessed Be!

Rob and Roxanne

Tucker71
Tucker71
in reply to Dynomite

Hiya Dynomite, can I ask u about ur hearin? U say it's slow getting better, did u not go for tests to see what th extent of damage was? And if so what was it ?... Only asking because I'm 6 wks post B.M. And im still pretty much deaf, iv got 20% left ( hear vibrations b& stuff) ........I wou love to think mine would slowly I'mprove, anyway hope u can reply, cheers

I was prescribed hydrocodone upon leaving the hospital and my gp refilled it once as he asked me if I was still having headaches. I probably took hydrocodone for 3 months post "aseptic meningitis (bacteria unknown)"

I still get headaches now almost 23 months removed. They have gotten much better. In the beginning the thing that helped the most was a bloodpressure medicine calcium channel blocker verapamil. I took 40mg 3x a day and now take about one or two every other day. My neurologist doesn't think I should still be having headaches but off the meds for a few days and I still get them.

I am going to see another doctor who has a promising new treatment for repair but I have not recived an appointment with this Dr. yet.

When I do, I will post as aI know many on this board are waiting to see what this treatment is and what it does.

I wish your wife well on her recovery and she needs to just take it easy.

SilverCharm

Thank you SilverCharm!

My wife has been on lortab/hydrocodone for a number of years for many back issues (to the point where shes filed for disability) so we are open for just about anything! The over the counter items don't touch what she suffers from, as I'm sure EVERYONE can agree with...

Thank you for the thoughts and I look forward to your updates!

Rob (for Roxanne)

Thank you SilverCharm!

Please, let us know how it goes...I know medicines are sometime not available in similar compounds here in the U.S., but any information is GREAT information! We can go to her doctor and say "Hey, we heard about..." and see if that is available or what is close to it.

Good luck on your continuing recovery!

Thank you again!

Rob (for Roxanne)

Kissbeatlebuddy,

I am in the US and have started taking something called Cerefolin NAC. It is a vitamin compound with B12, antioxidants and folic acid. It is used to hopefully aid with mild cognitive impairment and assist with headaches.

WE will see if it works.

SilverCharm

I myself got bacterial meningitis in April this year I to suffer with headaches and dizziness the doctor give me tablets for dizziness, now trying one for headaches as well will let you know how I get on

You may also like...