Ongoing head pain 11 months post Bacterial Meningitis - Cooling cap helps

[ShannanLouise]

I had bacterial meningitis, pneumonia and pleurisy back in March 2013. I was misdiagnosed and given the wrong antibiotics, so my pneumonia and pleurisy were cleared up, but the meningitis raged on. I was in severe pain for over 7 months, unable to walk, or bear daylight, unable to read, watch TV, use a phone or listen to the radio. I had to lie quietly in a dark room day and night for months and months. My neurologist says that I then developed encephalitis which is apparently why the pain is still continuing - I'm now into my 12th month of illness. There is no way that I could consider doing any work (ironically I'm a neuroscientist). I cannot go in a car and can't bear any sun on my head whatsoever.

No medications alleviate the pain (as I know others have also found). I tried High Flow Oxygen, but that only helped for a couple of weeks to slightly alleviate the pain and, after using it for 7 weeks, I've now given that up. However I have found that a 'Cooling Cap' is hugely effective in temporarily alleviating the pain. Here's a link to the company I found which is in Australia (I live in Sydney), iceheatwraps.com.au/coo... . I don't know if they send them abroad (they probably do), but you may find other manufacturers in your own countries. I hope that it might help others too. It doesn't make the pain go away, but it reduces its severity and, more importantly from a neuroscientific perspective, we know that inflammation of the brain is detrimental and may be implicated in many brain disorders, such as dementia. Therefore reducing inflammation is likely to reduce that risk. I for one am doing all I can to minimise the risk of long-term damage following this dreadful meningitis and the cooling cap does seem to help.

[daffodil]

So sorry to hear all you are going through.You have really had a traumatic time.Thanks for sharing this info -really interesting as many of us suffer on going head pain.I had bacterial Meningitis and septicaemia in Jan 2008 and still suffer migraines,but thankfully they are very well controlled with preventative drugs.Wonder if this is the same as cold caps that are given to prevent chemo hair loss?

Please feel free to pm me if you would like to chat more.

[ShannanLouise in reply to daffodil]

Hi. I'm sorry to hear you were so ill and that you still get migraines all these years later. That's dreadful. Yep - I have seen cold caps used for chemo hair loss. Some are more complicated, using dry ice as a coolant. This is a very simple cap that you simply soak in water to hydrate the gel inside, then leave in the freezer. It really does seem to have helped me.

PS - I'm having a relatively 'good' day today!! Isn't it wonderful when you get a day, or even an hour, with lesser pain.

I wish you the very best with your ongoing recovery - keep positive x

[daffodil in reply to ShannanLouise]

Yes,it is great when we get a "good day" and they do get a bit more frequent as the years go on,or at least less bad ! I also have ME/fibromyalgia and endometriosis so been chronically ill over 10yrs.Thanks for your kind words -you seem a very positive person.

[rowenafly]

Dear Shannon louise, thanks for posting about the caps, I am in Melbourne and have had chronic migraines this year, but oddly, not last year. I am going to buy one as ice is the greatest ally in the head pain for me. i notice you are 7 months ago from the reply above. How are you now? I want to wish you the greatest luck and best wishes as this has been huge for you. xxxx

Rowena

[ShannanLouise in reply to rowenafly]

Hi Rowena,

Lovely to hear from you. I hope that the ice-cap works for you. It worked for me in giving a small amount of relief from my ceaseless headpain, but did not actually cure that. The pain after bacterial meningitis just keeps on and on.... However, now - 19 months since I got sick - I am able to do more. I still can't watch tv or listen to music/radio, can't get any sun on my head whatsoever and can't go in cars/trains/buses... but I can go out to quiet cafes, I can walk pretty much ok most days and can concentrate for longer. So there are signs of improvement

I hope very much that your head pain subsides soon.

Shan x

[DebDog]

Thank you for sharing. I am so sorry that you are suffering from the complications. Its so hard to explain to doctors, friends, & family when they have not had the pain we endure. I am in my 11th month since BM diagnosis. I was hoping that the headaches, etc. went away. Just like you, I am searching for some relief. I will check on the ice-heat wraps. That's something I haven't tried. I hope you can find other things that help you also. If I find out anything I will share with you.

[Innis]

Haven't used a cooling cap but ice pack, or like last night good old frozen peas. I'm a year post BM and suffered hair loss as well, I am now keeping my locks short and see lots of regrowth. Not sure why my hair was falling out. I also take amitriptyline for pain, but my thinking is a lot slower and I feel it can be worse when I take medication.