When does it get better??!

[warnergirl9]

i was dignosed over a year ago & the pain of migraines, with spinal pain by my neck is unbearable! Being unbalanced if im just standing or walking. My memory is lost i fricking hate this

[Jeffery]

Hello, You are not alone there. I am 2 and 1/2 years post bacterial meningitis. I am left with imbalance and 2 new diagnosis. Sjogrens and general neuropathy. My memory has been formally tested by a neuropsychologist and it is fine. Sometimes I find myself searching for a word and it takes concentration to recall it but eventually I do. I find that Indian head massage helps the neck pain. It hurts for a day or two afterwards but then I get some relief. I have to space my activities and rest when I am tired. If I push, my body pushes back and not in a pleasant way. Keep asking questions and be kind to yourself. This is not an easy journey but you are tough or you wouldn't have survived the assault to your system. Good luck and Kind Regards, Jeffery

[warnergirl9 in reply to Jeffery]

Thank you for responding i feel your right with trying to bounce back & my body says hell no!

[Stevedrew72]

Hi, I'm almost 3 yrs post pneumococcal meningitis, still struggle with memory loss, and deafness, but the headaches, slurred speech, and imbalance have all improved massively. I found weight lifting in the gym helped with my headaches, don't know why...... Maybe having to focus on the lift took the focus off the headache? It's a slow process, listen to the what your body is telling you, and hopefully things will improve. I went through some dark places on the journey and I'm sure others have too, it's ok to do that. For the last 12 months, things have been a lot better

[paul1224]

sorry to up set any one but on the 23 /11/2013 it will be 10 years since i went down with BM and i am still asking that question

still have physo and all the help i can

memory is shoot and general health is bad no balance etc

i dont worry if this will get better i just know pray they can not get any worse

one good sign went from being total deaf to just having 2% in my left ear and still none at all in my right

My doctor always tells me i am lucky as i have died twice and i am still here

dont give my self much hope on the third time lol

all the best for all and be and feel lucky we are all still here there are alot who are not

we have to fight for them

good luck to all

[siobahn]

I am 4 yrs post vm the dizziness, constant h ache for over 3 yrs, my neck was horrendous moving it was so painful to be honest at one point I was beside myself with ongoing unwellness it seemed it would never end...... All I no is it seems to be a case of slowly but surely, ino it's frustrating but for me the frustration made me worse, more stress more pain I think so I decided to try mindfulness meditation & deep breathing, it helped so much..... My heart go out to you, I no how you feel but it will get better.... Put yourself first, nurture yourself, you have to x

[Meningitis2011]

I'm going to see my infectious disease doctor for the first time since 2011 (the last I had VM. I also am starting physical therapy on Tuesday for my falling. I can't get in to see the doctor until Nov 20. Hope the therapy helps.

[warnergirl9]

In bed now day 3 while life around me is happening.THE pain in the. Spine is worse, now a pinch nerve. Ice pack all day, motrin 800, neurotin, tramadol. Omg im so angry, crying@ my age, & getting depressed im so upaet

[menigitishead]

Please all of you need to try this. I too suffered from BM, mine was in 2010. I also ended up having brain surgery this past Feb. to close the hole in my sphenoid sinus which was how I contracted the BM to begin with (hole closed on it's own but came back in Dec. 2012, along with a brain herniation). Ok.. I'm or used to be a novice athlete.. running weight lifting.. ect.. blah blah.. I fought through the pain enough to complete a tough mudder race in Sept. 2012. kudo's to me. (If I can do that you can try this) Ok.. so now since my brain surgery, the reoccurring neck/spine shoulder pains that I've had since the meningitis have spread to my lats/strats muscles... hmmm.. what to do. I have now started mobility wod.com 5 shoulder stretches exercises for the past two weeks along with thoracic foam rollers. I'm not trying to sell you mobility wod.com site, there is a fee associated with the use of the site. (I'm not affiliated in no way to the site either) I'm fortunate to have a cross fit instructor teach me the proper way to stretch the shoulders using the mobility wod techniques. I just started a pregnant version of a crossfit plan as well.. not pregnant but I can't push it like I want to either. The pain is crazy if I go nuts in the gym. I keep a steady heart rate of 140 and do the routines that a pregnant lady would do. The stretching is hard core and can be painful but in that painful... feel so good kinda way. The idea is self myofascial release and realignment of the shoulders. I think it just helps to loosen up the spine, any scar tissue that may be a result of the Menigitis. The extent of unseen damage as a result of Menigitis is unknown to me. I'm very fortunate.. I have my hearing and eyesight. I do sometimes at a loss for words, or they come out sounding funny. For the first year of recovery I wouldn't carry a glass in my hand, everything hit the floor. hair brush, tooth brush, curling iron.. which stinks when your right handed. I do think that brain games help with memory. .. my short term.. well um.. what was I typing about?... lol I do have hydrocephalus and am on diamox med. to keep the pressure under control. I should be off of that med. keeping my fingers crossed in about 6 mos. last LP my pressure was down.. soooo maybe.. Any way I'm no doctor.. I can only share my experience, but if specific stretching has worked for me.. and is keeping me off of Cymbolta.. which is what my nuro wants to put me on for neuropathic pain as of Oct. 6th. No thank-you.. Any drug that has that many side effects including headaches.. I just don't think it's for me. Just thought I'd share my success. My suggestion would be if you don't want to pay a fee to view the site look up as many mobility stretches as you can on-line. Some of the foam rollers out there do come with instructional CD's and the cost of a good roller is around 40 bucks. Get tough and get the ones with the nubs.. painful at first but oh soo good after words. Yes weight lifting helps as well. Good luck to everyone

[tigergal in reply to menigitishead]

Hi I am searching all the time for an answer to my condition, low pressure hydrocephalus without surgery and I read you re taking Diamox? Can you please tell me what this does? I have ongoing non throbbing headaches and am hoping to see them go away, Thank you, Brenda

[menigitishead]

diamox is for high pressure, it's an alkamozoid.. (sorry can't spell it). It helps to reduce the amount of spinal fluid the body produces, therefore alleviated the need to get a shunt put in my head. My pressure is not very high and I think the diamox actually gives me low pressure headaches. Wish I could tell you more about low pressure. I do know that with low pressure basically there is no cushion for your brain. hence your pounding headaches. I do think that I sometimes get low pressure headaches as a result of using the diamox. I think it takes to much water out.. Diamox, is a diaretic but not in the same sense as a water pill. diamox pulls out the fluid from the kidneys vs the intesines, therefore less production of spinal fluid. It's actually given to hikers to treat High altitude sickness. I do know that when I start feeling frustrated, anxiety that something is off kilter in my head. My fix.. crazy as it sounds, coconut water to replensish my lost electrolytes and potasium levels caused by using the diamox. There are so many nurons/receptors, tranmitters.. etc... that need the right balance of fluid in the brain. High pressure/low pressure.... it all just bites.. pain meds don't work . I research all the time myself. Have you joined the hydrocephalus orgranization? I will certainly pass on anything I learn in my readings. I know it's not as simple as cocomut water, but I do recommend drinking it, along with stretching of the shoulders and neck. If your anything like me.. pain just seems to worsen if the neck and shoulders are tight. stretching also increases the release of feel good endorphins. I have read that in my research and for the past 6 weeks I've been faithful to my routine.