Pregnancy And Raising a Family After Cerebral, Spinal Bacterial Meningitis??

[honeybeesweety]

I had cerebral spinal bacterial meningitis at 10 1/2 months old (1988). I was in ICU for 5 days and the hospital for 11 so I was told. My Parents were told that I likely wouldn't live, but that if I did I'd be blind, deaf, dumb, or mentally retarded or a combination of any of them. I lived and I'm not blind, deaf, dumb or mentally retarded. However, in 2004 at the age of nearly 17, I had another meningitis scare. This time they thought it was viral and I was rushed to a larger hospital, I then had either an MRI or CT scan of my brain with contrast, and when I went to sit up and get back into the wheelchair I fell over having a "pseudoseizure" (means I'm conscious when I have them rather than unconscious)... Anyway I never heard the results of my scan, I had a pediatrician come in and yell at me which cause the seizure to stop for a second or two and he immediately said it was a classic sign of conversion disorder and got a shrink to come see me.... I was told that I'd get over the initial "episode" which lasted about 2 months of having seizures around the clock anything from a few seconds to 10hours at a time. from having "the shakes" and walking and talking while doing so to being hauled to the ER out of breath from shaking so long and hard. Long story short, small small percent will have a relapse in the next year and a very very small percent within ten years and like 1% life long relapses. I've had half a dozen or so, but they've always been a couple of weeks at most(one of them) and the rest have been just one or two seizures and nothing more... I was seizure free for 7 years.. then they came back and They've stayed for a month, nearly daily. I also have had headaches and low back pain daily for as long as I can remember. The last year or so it's been daily hip pain as well and my joints pop a daily, wrists, shoulder, hips spine. Also when I get very stressed or sleep deprived I have severe headaches, my left temple literally bulges and kills!! My neck and back go all stiff and ridged and painful, I get a fever and lights and noise bother me, but it's different than a migraine. I also get sharp shooting pains out my hears.. Oh and my meningitis was caused by recurrent ear infections, I was 1 month premature and have had allergies since I was 2 weeks old. Caffeine, sugar, gluten, artificial sweeteners, lactose etc make me ill. I've also had stomach pains, dizziness and nausea for at least 20 years. With all this coming up again and back... my boyfriend is concerned about having kids and raising a family and how much help I'd actually be able to be, or if he'd end up marrying me and getting stuck, providing, raising the kids and taking care of me....Anyone have any advice?? I see nothing that makes me think I can't or should have kids or that I wouldn't be able to be their primary caregiver and a good wife and mother, but with the stress I think yeah I could have my bad days or weeks with junk coming back up again, but what do I tell him?? Anyone else have experience with it? Does pregnancy or childbirth cause these problems to resurface or would it make a person bedridden or something?? Thank You All!!!

[Amrita-A]

Hi Honeybeesweety,

It sounds like you've been through a lot and have a positive attitude. You sound like a miracle baby!

Your situation seems pretty complicated. Have you seen a specialist and asked him or her those questions?

I have no experience or expertise other than my own journey with VM, so I wouldn't feel competent to advise you in any way, but I wanted to acknowledge your post and wish you all the best.

Amrita xo

[honeybeesweety in reply to Amrita-A]

Thank You! I am looking into seeing a neurologist...aside from that I don't know who to see... I don't have health insurance, I'm trying to get through school and so that makes time and finances rather short at the moment...Thanx again!!

[Amrita-A in reply to honeybeesweety]

Keep us posted!

[Lesleyandjoe]

Hi, I found your story interesting as I am trying to find out if there could be a link between my 13 year olds daily headaches with dizziness and dislike of light and him having meningitis as a baby. His headaches started about a year ago and he missed so much school, Educational Welfare was involved which wasn't good. He is under a Consultant at the local hospital, they have no idea of the cause of his headaches and dismiss my suggestions of a link between the meningitis. Since he has been taking Pizotifen the symptoms have stopped but now they are weaning him off it, I don't know what will happen.

Same type of meningitis at 9 and 1/2 months as a result of ear infection, 5 days in ICU, month in hospital, brain damage and told he could be deaf but he turned out absolutely fine. I feel really sad about the way you were treated at the hospital, they were out of order. I worry that you could spend loads of money (if you had it!) trying to find answers but end up no wiser. In England at least, there doesn't seem to be any research on the after effects of meningitis, that's why I joined this group.

Your talk of wanting a family made me think of a best friend who had ME and she fell pregnant and worried how she'd cope. In the end, the opposite happened, being pregnant, her ME practically disappeared and she has been well for years now! It would be such a massive shame if you gave up the chance of a family just from thinking what if? I have 3 kids and they are the best thing that happened in my life, I would have hated to miss out on that, my life would be so empty without them!!! Try not to worry so much about the future and just take one day at a time and tell yourself you will cope with whatever happens one day at a time. Good luck! Xxxxx

[honeybeesweety in reply to Lesleyandjoe]

So sorry to hear about your troubles with people who don't understand. I did a quick google search, Headaches years after meningitis, and these are some of the links I found that say headaches are linked to meningitis and can be years after the infection and last a lifetime... Hope something helps!! According to my research there are many problems that can develop as after effects and can last a lifetime or less... Thank You for sharing!! I pray you can get some answers!! scielo.br/scielo.php?script...

webmd.com/children/vaccines...

Hold on to hope, as when I started researching 5 years ago, I found almost nothing on long term effects, but now there is starting to be much more information out there

[honeybeesweety in reply to honeybeesweety]

Also thank you for sharing about your friends experience That gives hope!! I will tell the bf and perhaps he'll have some hope too!!

[Lesleyandjoe in reply to honeybeesweety]

Thanks for the info!

[Packard]

I have the deepest ache in my heart for you. Meningitis of any type can cause many problems, as you know well. I hope you are able to overcome the symptoms and the effects. I will pray for you. May G- D touch you and watch over you and yours. Just never give up. Talk to G-D as if he was standing in the same room with you. May it be well with you and yours.

Packard

[honeybeesweety in reply to Packard]

Thank You!!