Meningitis and Encephalitis

[Hollie98]

I had meningitis and encephalitis in November of 2011, and ever since then i have been left with daily headahces and regular "attacks". I've had a headache 24/7 all day every day for the last four years. it hasn't been easy and i have tried numerous medications and treatments. i'm only 17 and don't really want to be on constant mediation for the rest of my life, i also dont believe drugs are the answer to my problem. I was just wondering if anyone had any ideas or treatments that might offer some relief. I open to any suggestions, 4 years of this hasnt really left me with many options. xoxo

[StrawberryCream]

Hi Hollie

With treatments for the headaches what works for one person doesn't necessarily for another. Not sure what you have tried already? Sometimes headaches can actually be caused by some analgesics. Wondering if you have considered your diet and what you drink because again some things can exacerbate headaches. Unfortunately for some the headaches continue to be a long term problem and you have to find the best way to manage them when they occur. A quiet dark room and rest is often good. Have you had your eyes tested to make sure your headaches are not worsened by needing glasses. I note that you say you are 17, and many young people of your age will have very late nights, like to drink some alcohol and not get enough sleep, socialise in noisy environments etc but unfortunately these activities will all exacerbate your headaches. I am not sure what you mean when you say you have 'regular attacks'? Are you still at school or college with the stress and pressure of exams? Maybe see if some alternative therapies would be of help which in the UK you can apply to Meningitis Now for funding for a course of sessions.

[ignoreit]

Where do you live, Hollie? In the U.S.? I ask because different countries have totally different medications.

[ShannanLouise]

Hello Hollie, I'm sorry to hear of the pain you've been in. I too have suffered years of terrible head pain. In 2013 I had meningitis (bacterial) along with pneumonia and pleurisy. After about 18 months I was able to walk again and to bear daylight, but I'm still unable to deal with noise, can't use a phone or listen to music/tv and can't go in cars (the vibration makes my head even worse). Like you, the medications that were suggested didn't work for me and I don't want to be on medications anyway. Being a neuroscientist myself, I'm fully aware that they can be counter-productive, causing other side-effects and not really addressing the underlying cause of the pain. As one of the other people who've replied to you has pointed out, we are all different and each responds differently to treatments, alternatives and medications. Some of the things that you might try are altering your diet by excluding 'inflammatory' foods. These include those in the nightshade family (potatoes, aubergine, tomatoes...) and 'hot' foods like chilli, curry...

Other things I have tried with limited success are; flotation tanks (restful but I found coming out into the real world was too extreme and made my head worse - you may find differently as I've read that others find it good).

High-flow oxygen - this must be prescribed by your doctor (at least it must in the UK and Australia) but can be helpful used correctly.

Ice-cap - this is the thing that helped me the most as it reduced the high temperature of my poor head very effectively. I'd recommend you try this - cheap, easy and with no side-effects. You can find them to buy online - they're recommended for those who suffer migraines so there is research evidence to support their efficacy in headpain.

Meditation - I can't recommend highly enough the importance of being aware of yourself and of your own ability to help yourself. We have been through a very bad illness and must strive ourselves to get ourselves better and not to rely on doctors. They of course will do their best, but we too must try to heal ourselves and meditation is a very good starting point.

Read the books of Norman Doidge; the Brain that Changes itself and The Brain's Way of Healing. Both are excellent, readable books that give practical advice for those who've suffered. In the second of those books you will read about Matrix Re-patterning which I have found very helpful. There is also a section about how to focus your own thoughts on healing your brain which is very useful and effective.

Most of all you must give yourself a lot of rest, drink lots of water to keep your brain hydrated, try to exercise to get a healthy flow of blood/oxygen to the brain and sleep A LOT. Rest, rest, rest. Be kind to yourself. You must give yourself a chance to fully recover.

Let us try to get well together Hollie (BTW my sister's name is Holly!) This forum is a great support and we are all with each other in our healing process. For some that is shorter than for others, but we all know what the suffering is like and all feel for you.

Shan x

[TezzaMcCann]

I had same July 2012..... Left with daily headaches.....

It was long process but I removed caffeine and msg's from my diet which helped....

I then removed gluten and dairy which helped a bit more.......

Meditation was the next step.......

A year ago I was put on topiramate 100mg twice a day and once you get though the first six weeks of side affects it really helped.....

Just before Christmas 2015 I had a daith peicing done ( in ear) and it had been amazing I have not had one headache since..... I'm even going to try reduce my medication....

Good luck.

[vickylou36]

Hi Hollie98 I had pnemococal meningitis and encephalitis 2 years ago. I tried all sorts of medication but couldn't cope with the side affects, they affect my balance made me even more tired also I have psoriasis which went worse on the medications. I now take asprin for headaches which does help and I had a lot of treatment at the chiropractor this is what helped the most. It's expensive but I think it was worth it. I went twice a week for 6 week after my initial assessment then slowly reduced over about 20 weeks. Now i only get a couple of manageable headaches a week.

[menin]

Hello Hollie, I had the same, but when I got out from the hospital, I was taking medication for everything I think, I don't remember, but when I wasn't seeing improvement I decided no more medication, I started with vegetables a fruit, garlic everyday in the morning, yogurt priciotic greek, milk, at first I wasn't eating banana, cuz my constipation, now I'm eating banana, for headaches still I'm dealing with that, but I try green smoothie for that, sometimes works, but better that painkiller which constipated me righ away, when I get home I keep you writing, right now I'm at work, just don't give up.

[Sut1]

I contracted meningococcal meningitis 46 years ago in the Army. I hate to tell you this I have had migraines or some form of headache for those 46 years. I don't mean to sound rude. But you'll learn to deal with it. It becomes background ans some days it is not that bad other days it is very apparent and just lie down and try to get some rest.

[SummerH]

Hello,

I too had meningitis and encephalitis...but this was back in 2004.

Since then, I have struggled with migraines- although luckily not as often as you. Mine have always come and gone...sometimes once a month, sometimes 9 times a month. I noticed that as i have gotten older, they have seemed to get worse.

I have tried, and continue to try so many things for them...the best thing i can think to do is just trial and error. I have tried many different medicines, but i too do not like to depend on them.

Here are the things i have tried; hopefully this can help you pinpoint some of your triggers and lessen your headache frequency!

-diet: i have cut sugar out, which really helped...i also took the ALCAT blood test and did an elimination diet to learn cutting out wheat and some other random food helps

-hydration- i try and drink tons of water- ESPECIALLY if i do something where I'm sweating a lot or drinking alcohol

-supplements- right now I'm taking MigReleif and CoQ10, but i have tried many (feverfew, butterbur, b vitamins, magnesium, etc)

-yoga- something about it seems to help my neck, so i do yoga every morning before work. usually i get migraines on any days that i skip it...so i really really try to do it every single day. if i don't, my neck gets really creaky and i feel off

-migraine massage- these helped at first, when the guy concentrated on my head and neck, but when he started doing my back instead, it stopped helping and i started waking up with migraines on all the days i had migraine massages scheduled. it was weird.

-mouth guard- i found that i was clenching my teeth at night so wearing a mouthguard has seemed to help

-pillow switch- switched to a much lower and less fluffy pillow

-medication- i cant begin to recall all the medications i have tried. all i have found to work is sometimes aleeve at the onset, sometimes sumatriptan 100 mg IF taken at the exact right moment (still to be determined...if not, then this usually leads to a cycle of migraines and sumatriptan going on for days). i have recently started amnitriptylyn (sp?) at night- which is an anti-anxiety med i think and seems to be helping

physical therapy- havent tried this yet, but am going to start this friday.

It seems that even though my triggers can lead to migraines sometimes and not others, these are what they are:

dehydration, stress, lack of sleep, skipping meals, bright light, vigorous exercise (which i think is dehydration), looking at screen for too long, fluorescent overhead lighting.

All i can say about my post -meningitis/encephalitis migraine journey is that it is seemingly never-ending trial and error. i think you find the cause and solution...but then it doesn't work every time and so i just keep searching...

Nice to know we aren't alone though AND that we are very lucky to be alive. I try and see my migraines as reminders that i am lucky to be alive...hard to always stay so positive when dealing with the constant excruciating pain though.

good luck to us all!

[Hexy in reply to SummerH]

Hi all, nobody has mentioned memory loss?? Ideas 35 when I got menoencephalitis, now 64 and I have about 12years of my life I can't remember. If I read 3books on same topics such as detective stories ,when I tell someone else about this great book I read, my brain makes all 3books into one. I have learned to laugh at missing memories or misjoined memories. I was told this is our brain's trying to piece bits of remembered memories to fictitious one's, makes for a real conversation about repeating oneself, or forgetting what you are talking about. Gibberish!😂. I see cranial osteopath still every 2weeks. Was in isolation hospital for quite a long time,then was allowed home under condition I attended twice a week....for 2year's. Apparently my personality changed. I still forget stuff,migraines, back and balance etc. Sometimes I despair, other times I can laugh. I do draw and write. Be good to yourself.God Bless 💜