Just needing some encouragement. It takes a toll on me emotionally and physically. Thanks for any ideas for coping you can share.
26 months after BM and still have daily mig... - Meningitis Now
26 months after BM and still have daily migraines, nausea, and head pain. Does it get better?
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maineknitter
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I can empathise with you I had BM in 2006 and although I will never get back to 100% normal as I lost both legs below the knee, I would say I am 99% of the way.
It is a slow journey and you need to listen to what your body is telling you, I treat it as small steps looking at previous weeks and picking out the little improvement " I could not do that 2 weeks ago" and slowly built on these it takes as long as it takes no one can put a time to it.
Try to remain positive and up beat don't let BM win this battle make it your victory to get back to health.
Regards Mick
Most of the time, I do have a positive attitude. But, lately the migraines have been really bad with no help from the preventatives and the abortive medications. I'm just getting a little worn down by it. I need to call my neuro doc and talk with him about the med side of things. I like your idea of where am I now that I wasn't x time ago. That is a good comparison to reflect on. I have been focusing on how tired and achy the migraines make me, not how things are different, especially from when I first entered the hospital. Thank you, legless7397.
I too suffer daily headaches since BM.
It's been three months. I have started on a preventive hoping it will work
Has anyone benefited from them
I do get some relief from the preventatives. But the abortives are more noticeable in their effect. They stop migraines in progress. If it were a choice between the two, I'd choose the abortives because I can see or rather feel them actually working.
I had BM in August this year and my pain management doctor is doing a procedure Thursday, a block for my headaches. I'm hoping this will help, will keep you posted!
Was it an occipital nerve block? Did it work?
It worked for a little while, now they are thinking of burning the nerve endings...
Oh that sounds like an ouch! I hope whatever it is that happens works.
It wasn't to bad, they did iv sedative and then numbed before the shots. Hoping the next step isn't to bad!
Dear Mainknitter and Legless, I wish I could hear my son's voice and tell me what is wrong so I could have the
chance to make it right. He didn't make it. We celebrated his 2nd year anniversary of his death on Nov. 4th. Please, Please don't take this the wrong way that I wanted my son to suffer in pain, or to loose his legs, I just wish BM meant .. Bowel Movement. I know I shouldn't of made a joke, but honestly, people don't know how serious Bacterial Meningitis is. They don't even believe it exists. Here in BC, they don't think enough people have died or are permanently disabled from this disease. I would love for you to tell me your stories on our website ... meningitisbc.org I am so sorry that you both are suffering from this disease, and honestly, if there is anything I can do, I will. No jokes, my heart is completely shattered, and I have been so betrayed by the medical system in BC, Canada. We do not live in a 3rd world country, and my son dies from a vaccine preventable disease. I wish someone from the Medical Community in BC, Canada, had the KAHUNAS to stand-up and protect our children from this deadly silent killer and supply the proper remedies for people that have life-time disabilities that this disease causes .... and put aside the politics of the cost of the vaccine(s), never alone their egos!
So sorry to hear of the loss of your son-when we talk with people who have survived and we are all struggling with life after meningitis,I do hope it does not sound insensitive to those who have lost loved ones.Whenever I feel sorry for myself( and believe me I have had times when,even as a Christian,I have wished I had just slept away,to be relieved of my daily suffering) I am jolted and humbled by the awfulness of Meningitis.
I have been in correspondence with my MP re the Men B vaccine,being stopped and like you,angry that cost ,rathe rthan common sense and compassion rules the government.I shall certainly have a look on your website.Best wishes and keep strong.
Hi there, r_u_ratty2, I completely get your joke, I've made it myself a time or two. Even blogged about it once, cathseeker.blogspot.com/201...
I always realize what a silly goose I'm being when I think about the folks who don't make it, like I almost didn't. But, then, pain is pain and it doesn't matter what's causing it, whether grief at a lost love or grief at what used to be, it just hurts. I'm sorry for your loss.
I shared my story on your website, under the contact us link. I think what you are doing is very admirable. I would sign the petition, but being from another country, I don't know if it would hold much weight with the BC government.
dear maineknitter.
I have not had daily headaches since starting a blood pressure medicine to lower the blood pressure in my head. this has workwd for me. my bp was normal to begin with but the idea is to lower the stress your capillaries are putting on the brain. every cas is different but this works for me.
good luck.
Hi SilverCharm, I've tried blood pressure medications before and they didn't really do much except make me dizzy. Did nothing for the migraines, as mine are from paralyzed in an inflamed state meninges. But, that is good advice for others. Thanks for the offer. Good luck to you too.
So sorry to hear of the side effects you are suffering. As you will see from browsing this forum BM kills,maims and leaves many with life altering side effects.I am coming up in January to my 6ht year since BM and Septicaemia,which nearly took my life.Through God's grace and the skill of medics I am here,but not the person I was.Like you I suffered daily migraines but am now on preventative treatment,which has helped hugely.I still have a general background headache all the time and get the odd migraine if I overdo it.It would be worth seeing your doctor to see if preventatives could help -I tried a number,before finding one that worked and I could cope with the side effects of.
I was lucky enough not to have any amputations,but am on crutches and wheelchair due to damage to the vestibular system.This seems to be permanent and is both very unpleasant( nausea,spinning and a constant feeling of imbalance,so that I fall over if standing for more than a minute without crutches.
Have also suffered short and long term memory loss,which makes the simplest tasks very frustrating-have written a blog on this and also on dizziness and balance problems if you are interested.
The folks on here are the bravest people I have ever "met" and though we all have different experiences,sharing and encouraging is a real lifeline as we know that we are never alone.So I am really glad you have found this forum.You can also privately email a person - just click on the user name and it will take you to their profile and then click message.Sometimes there are particular poster who you just click with - I have a number who I have shared private emails with and received a lot of support.
Did you know that the Meningitis Trust offers free counselling and also 1-2-1 contact with someone who has had a similar experience?I now email,text or phone 4 buddies and they are all a huge source of inspiration and support.
We are all different in how we heal.Some make full recoveries,others partial and most of us it seems are left with some kind of after effects.For me big part of my journey since 2008 has been about acceptance of the new me and trying to cope with the devastation it has caused in my family - family fall out when I so needed help,abuse and now separation from my husband.I now have to accept that I am disabled and will never be able to drive,work or do anything without support of carers.I do pray that one day I will walk again .
wHyou must come to acceptance,never give up!Many symptoms can be helped -eg migraines, nauseaave a supply of cinnarizine travel sickness pills) which I use when vertigo gets really bad,usually from movement and travelling.
The other thing I find is if I try to push beyond my limits,all my side effects worsen.I already had ME prior to Meningitis,but it has been very much worse since.I am mostly house and bed bound.
So be gentle withyourself - you have been lucky to survive this disease,but you also have to live with the after effects.
Take care .
hi daffodil, I've been on preventatives and abortives since 5 months in. I ration the abortives because I only get so many a month. I hate that there aren't more that I'd be able to get. I have a call in to my neurologist to see about getting more. So, it's a matter of talking with his assistant and maybe scheduling an appointment. I was raised poor so we didn't ask for more a lot, it's a new experience for me. We'll wait and see what he says.
I tried to see if I could be set up with a buddy through the Meningitis Now folks, but living in the States, they don't facilitate that. There's nothing like Meningitis Now over here. I wish there was. I'm contemplating moving to the UK just to get the benefit of being in their jurisdiction. I was willing to just email the person, or phone if it were not going to be too expensive. Oh well.
I caught bacterial meningitis and e-coli through a spinal drain after spinal surgery. That was 7 yrs ago. I have never had nausea from it but I have a lot of nerve damage and my behavior has changed dramatically, its like I am a totally different person!? I am trying to find out if this is normal after BM. I sympathise with you...
25 years of migraine attacks, sorry but it's normal and nobody tells you about all the after effects, depending on how debilitating your original illness was? I also contracted encephalitis from the Meningitis! I do go to a sacral cranial osteopath, it helps with the stuff neck and headaches, though not a cure, get your GO to give you diazepam to help relax you as stress aggregates headaches and sumatriptin (migraine tablets) and please go loaded with information on meningitis it's surprising how many GO's don't have a clue. Also can cause depression, who wouldn't be depressed with constant headaches, hard to concentrate, irrritable, you get the idea. Hope this was helpful. Anita
