To everyone who responded to my post

[melpars]

I'm sorry I haven't posted in awhile, but I wanted to thank each and every one of you for your responses to my post. It helped so much in knowing I'm not alone and that what I'm experiencing is not unusual. I knew litte to nothing about menangitis and fully expected to maybe take a few days of rest and be back to normal and resume all my normal activities and return to work as usual. I didn't even know that I was in any type of serious condition when I was taken to the hospital. I only knew I was in agonizing pain, and the fact that I was in isolation, I thought "well, this is contagious, like the flu, they just don't want it to spread" At no point did anyone tell me the seriousness of the disease,(I was sent home from the ER twice, once saying I had a migraine, the next day saying I had a sinus infection...I almost didn't go to the ER the 3rd day but my husband called the ambulance). At no point was I told I could have any lasting side effects or to even have any follow up care unless new or worsening conditions occured.My faith and relationship with God is what sustains me now, but I still can't help but feel alone and helpless. My husband is now trying hard to understand and help the best he can. But all the other people I know simple can't understand why I'm not better yet. And my GP told me to take my preferance of pain relief for headaches such as Ibuprofen, but did prescribe Topomax. She said to do stretches for the neck and body pain, although she did prescribe to take one Zanaflex at bedtime. She said my symptoms are more from fear of having them than actually having them. Surely Menangitis is not that rare of a disease? Why are our doctors not more educated in this?

[David-A-B]

Everyones revovery is different. However it does take time. Everything you are thinking is quite normal too. Once the dust settles it takes you time to adjust to what you have been through. Take one step at a time and explain to your family exactly how you are feeling. It is so important as from the outside you will look fibe and they will not understand whats going on the inside.

Take care

[kalirachi]

Hi, your comment really does strike a chord. It is absolutely astonishing how little the medical profession as a whole understands about recovery from meningitis and of course the long term effects. I found out that there is no follow up procedure on leaving hospital at all. I had to wait nearly seven months before my follow up appointment with a neurologist who stared at me blankly when I complained about my continuing symptoms of headaches, constant dizziness, difficulty standing or trying to walk without assistance. He then confessed that he had no idea what was going on. During the seven months of waiting for this appointment I spoke to my GP who was equally unhelpful, just telling me to rest as for some reason my recovery was going to take time. The only time anyone will listen is when you have a serious relapse and appear to be facing a life or death situation. Knowing you are facing recovery absolutely alone with no help or support available is enough to have very serious deleterious effects on even the strongest person. After 20 months of trying to recover from the after effects on my own I now despair of doctors and consultants and particularly their insensitive arrogant attitude. Meningitis Now is doing a great job in providing the desperately needed help and support which is helping so many of us to cope.

[Hidden in reply to kalirachi]

Your faith in the medical doctors sounds like mine. I've even told family I'd rather die than ever step foot in another er again.

I too started trying to fix myself. One of my biggest problems was my lymphnodes. So, in researching to find relief, I found a tea (graviola/soursop) used to help lymphatic cancer patients.

To my shock, after drinking two 8 ounce cups a day, all of my symptoms decreased within a week. Within two months, I felt almost completely back to normal.

I drank 2 cups, steeped 10 minutes, sweetened with raw sugar or raw honey and creamer. One in the a.m. and one in the p.m.

I also took some brain, vision, and energy supplements: gotu kola, apple pectin, and grape seed extract.

Because mine is viral, I also took immune boosting things too: echinacea and Dandilion roots, vitamin c, and zinc. And neem, a natural anti-viral.

After two months, I felt pretty normal and cut back all supplements one week on, two weeks off, and tea just once a week.

Hoping what worked for me will help others suffering through the same hell I went through.

[sdjohnson231]

So basically your doctor told you your symptoms were in your mind? Your "fear" of having them was causing you to have them? Oh my! I'd like the doctor to explain to me why I get headaches IF I don't sleep 10 to 12 hours a night. If I have to wake up early one day, I'm generally okay, but boy do I pay for it the following day, without fail. That's not "in my head"! My balance issues, my concentration issues, my inability to form complete thoughts or sentences at times is not in my head! The best help I had was from going to a physical therapist. She helped me tremendously with the balance issues. I've fallen much fewer times since going to her. She also gave me neck stretches to do that have reduced some of my headaches. My husband is my staunchest advocate, too. Best wishes to you as you navigate your way to your new normal.

[melpars in reply to sdjohnson231]

Se has been my Dr.for many years and has been great at treating things such as the flu, my chronic bronchitis I tend to get every couple years, keeping up with my general health overall... but she doesn't really know anything about menangitis. She has listened to me well, but has seemed really confused that I'm having these symptoms. In the room she pulled up a menangitis site which says the same thing many of them say that I read before I found this one. It listed a few of the side effects but said they are rare and usually only last a few weeks.The only Menangitis foundation website we have here in tthe US quit posting anything in 2015. And it is one that said side effects are rare, and many people were commenting against vaccinating, claiming that vaccines are poison and they cause menangitis and other diseases. It was not a helpfu site. They know how to treat you here but I can't find anyone that knows anything about the aftercare or even that a person needs aftercare.

[sdjohnson231 in reply to melpars]

This site is excellent to get advice from people who have been through this and have firsthand experience of the after effects! Things I questioned experiencing were often verified by others on this site. I am also on Topamax, and that has helped my headaches. I found, after trying 3 other neurologists, one who had "some" experience in treating meningitis patients, but even he still doesn't entirely believe the severity of symptoms we experience. We all need to find a medical professional who has had firsthand experience with meningitis! It takes one to know and understand one, unfortunately. Susan