lidia........ that is so true, its also hard to talk about it at times, as ya think people are sick of hearing it, but the truth is sometimes its the only way we can deal with it, sometimes our family does want to know,
and OMG the stress thing,,,,, what do they expect, of course we are stressed it comes with the condition, the what ifs, ypu never know how the day goes or sometimes even the hr, making plans is hard, sorry ive had a couple of bad days and my husband has left me to it to deal with the kids while he is next door drinking, i havent had a break for 2wks as my kids are on school holidays which was stuffed up due to the rugby world cup thats here, anyway its sooo easy for them sometimes, grgrggrgrgrg just venting which i need to do,
That's crazy! I just read over this list, a list similar to the one that I composed and carried to my neurologist last Tuesday, at which point I was told that I was in deed having seizures and that my having Chiari Malformation had nothing to do with it. I am so lost and confused. :/ The medication that Iām currently on is causing me to stay dizzy a large majority of the time, making it hard to focus- which is not easy being a stay at home mother of six children. I just want to be "normal" again. :(
They just don't know enough about it. And it sucks for us cause it's like we have no help from all NL's or NS's. We just have to keep searching until we find someone who is studying and knows what really goes on. Also, we still go home suffering cause there really is nothing they can do except surgery. And that is just too extreme for lots of us. And, does it even really help? It's very frustrating. They just send us on our merry way and we still are like, "Ok, now what?"
It is very frustrating!!!!....makes me wonder if, in an effort to treat what they believe to be are symptoms brought on by seizures, are really being brought on by this Chiari Malformation and by administering seizure medication are only making things worse? What's even more nerve racking is the fact that as I continue to take this new medication I can see myself gradually going downhill...I can't focus, have trouble remebering conversations that I just had five minutes ago, and can't pull my thoughts together! :( I've tried talking to my Nerologist and all she can say is that it is by "pure luck" that this CM was found, and that it has nothing to do with what I'm going through...but is this really the case??
Topamax, I took it and you need to push the water and lots of it. It actually takes the fluid out of your body, and you need to replenish it so please drink a lot. I put a lot of flavors in my water to help with the intake. Stuff like Koolaid, chrystal lite, and lemon or lime. Sorry your having those problems, but try the water, my NL said to push the fluids, most doctors do not tell you that, but it will help you with the foggy thinking, and help you so much.
A lot of our folks on here also took Topamax, you can get a good feed back on talking to folks who have taken it too.
drugs can do so many things, how long have you been taking them?
if its been longer than a month then this drug is not good for you and shouldnt have to put up with it, there are many more other drugs that might help, have you tried gabapentin?
Thank you so much for posting this! I have my first appointment with my neurosurgeon tomorrow morning, and this has really helped me organize my thoughts about everything that I'm feeling.
Very useful. Thanks. A lot of my symptoms have been linked to my to my hyperprolactionma and my meds for that. I will take it in with me for my next appointment
amazing, i thought i was odd with the symptoms ive got, my surgeon keeps saying to me he hasnt heard of half of the relating to this op and recovery. i will take this with me in january whe i have my scan, thankyou.
Your story mimics mine. I too had a Hysterectomy at 36 due to severe cramping for years. I always missed work days during my cycle. Had to get shots at times for pain but never had any cysts or endrometreosis. The headaches/migraines and GI issues didn't go away after the surgery though. I would get exhauted and mushy mouth and just a loss of words(they were there, I just couldn't get them out). The headache could come in clusters and I was becoming more clumpy (which I already was) I would walk right into the wall, I knew it was there but it was like my body just had to hit it. I would feel sick, but didn't look it. I thought I was going crazy... but when I started to get the electrical feelings, like touching your tongue on a 9v battery. Those feelings would zip through me and out my hands even making my tongue go numb once. Doctors just look at me like I'm making this crap up. My NS says my CSF flow while diminished more so posteriorly, it would still be considered sufficient. No surgery until I cannot bear my symptoms any longer. Insurance HMO's are a nightmare in micromanaging every doctor I get to see. I feel like no one beleives me. EVEN though they know I have CM1. Its like flow is good enough, no syrinx.... go away! It gets so frustrating.
Long Strange trip it's been ~
Lori
Abby said:
It is so helpful for the doctors to have this, and you know what your experiencing, but if your like me I forget to mention it to my doctor. This list is a more complete check list and yes, severe cramping is one of them too. I suffered with this for years, until my hysterectomy when I was 36.
Having chiari is bad enough, but trying to explain to your doctors what your feeling is frustrating, so I found the checklist and checked the ones that apply to me and give him a copy. They appreciate it too, because they do not have to ask you what your experiencing and saves them time.
OMG I have had every symptom, the majority of them being since my accident a year ago, except sleep apnea (that we know of) Can I just say I am just so relieved to have answer for everything!!!