So, I have been having alot of neurological problems. I have been through the wringer, which I am sure you are all familiar with. Finally, my PCP called in a referral for a NS. The NL that I have been dealing with has been ok, but does not believe that it is the Chiari causing my symptoms…old story right. I had been feeling pretty good for about 2 weeks, the symptoms were very manageable. Then last week, I started with the fatigue again. I would be awake till around noon and then just couldn’t function anymore unless I took a nap. It frustrates me to have to nap in the middle of the day. I am 34, was very active and worked in an ICU for 12 hour shifts. Now, I feel like I can barely manage to get out of bed some days. On Sunday, I started with the debilitating headaches and nausea, then of course the cognitive difficulties. I have pressure in the back of my head at the base of my skull and pain in my neck. I also feel as if my brain is on fire.(anyone else with this symptom?) I have pressure on a daily basis, but this is awful. I seem to go in cycles of this, which does not make sense. I have a pretty high tolerance for pain, so I wanted to wait it out, but yesterday, I had had enough. I called my NL and he said if it didn’t get better by Thursday to call him and to drop off of one of my neurontin. I am so frustrated!!! Really, that’s how you are going to help me??? Today, I was headache free until 2pm and hello misery. I am going to call him tomorrow and go in for an appt. Even though I have no idea how he can help me. I am also going to tell him, that when I call, it is because it is bad!!! I try not to complain, I try to be active, I try to not let this take over my life, but it does anyway! I hate it. The people closest to me are supportive, but they do not understand. I try to stay positive and say that it could always be worse. But some days, I don’t know if it can get any worse. I am so glad that I found this site!!! This is an amazing community, I am so grateful for everyone’s advice and support. Thanks for allowing me to vent!
I’m so sorry to hear you are having such a rough time! I (and probably the entire site) understand exactly what you are saying. I am having a “good” week if you can call it that. Most of my symptoms have subsided and I only have the headache and neck pain. I haven’t ever had the feeling that my brain is on fire, but I can feel the pressure from my neck right up over the top of my head and my eyes feel like they are gonna pop out. I’m sure we all express it differently. I’m pretty new to all this myself and can’t really give you any advice. I just wanted to let you know I understand your frustration with Dr’s and the symptoms. I am 35 and all this crap is driving me nuts. I’m sure we will learn to manage and deal with our symptoms somehow. I hope you feel better soon and that your NL helps you at your appt. Vent anytime! ((Hugs))
I am currently on gabapentin. I had been taking 300mg 4x a day and when I called the NL he said to drop down to three. He thinks the meds are doing this. I am just so irritated. Thanks Abby for the support and the links too!
Abby said:
I take neurontin, gabipenten, is the generic name. It really helps with the pain, and sleeping. I would call and ask for it.
Honey, the reason your family does not support you, is they do not really understand what Chiari Malformation is. Folks are clueless and it is still so unknown. On the outside we look fine, but hurting so bad we can't stand it. You should educate those around you, with reading materials.
Some days are worse than others.
I am posting something for you to read and pass along. Hope it helps.
God BLess,
Abby
The headaches do start in the back of my neck and come up over my head and into my eyes. I have explained it several times to the drs that it feels as though my eyes are going to pop out of my head. It is a relief to see you explain it that way. The burning sensations that I get are in my face and sometimes in my head. They seem to think that it is the result of a damaged nerve and Trigeminal Neuralgia. I saw an eye specialist that couldn’t find anything wrong and he made me feel like I was nuts. He said, “I doubt that it is the Chiari causing your symptoms, but have another MRI in 6 months, then another in a year just to be sure.” Be sure of what? That it doesn’t get worse, in the meantime, I am to just deal with it? I am not sure what to believe anymore. I had a lumbar puncture done with clear results, except they found one ms strand. Which doesn’t mean anything. They keep saying that it is Encephelopathy (brain disease). Very vague right! The NL says that some things in neurology just can’t be explained. That is not very reassuring to someone that is suffering!
Marlena Harmon said:
I'm so sorry to hear you are having such a rough time! I (and probably the entire site) understand exactly what you are saying. I am having a "good" week if you can call it that. Most of my symptoms have subsided and I only have the headache and neck pain. I haven't ever had the feeling that my brain is on fire, but I can feel the pressure from my neck right up over the top of my head and my eyes feel like they are gonna pop out. I'm sure we all express it differently. I'm pretty new to all this myself and can't really give you any advice. I just wanted to let you know I understand your frustration with Dr's and the symptoms. I am 35 and all this crap is driving me nuts. I'm sure we will learn to manage and deal with our symptoms somehow. I hope you feel better soon and that your NL helps you at your appt. Vent anytime! ((Hugs))
Abby,
Thank you so much for sharing the "How to talk to and treat someone with Chiari." I cried as I read it. Even though crying makes my head feel worse, it felt so good to have found something to give to those closest to me to help them understand. Thanks again darling!
Nicole
Abby said:
This helped explain to my family and friends.
Thank you for the support :)
Christine H. said:
Oh yeah Nicolee, this must be venting week because I am not happy with healthcare for us these days either. I also sometimes get and have felt like my brain is on fire, tremors, head and eye pressure (similar to an explosive migraine), and many many more. Symptoms just seem to rotate in and out randomly in any order or combination. Nothing's ever really etched in stone except headaches, neck pain, and back pain. Everybody's different, but from what I've read, we all seem to suffer those three all the time without fail. We're all in the same boat so vent whenever you need to because we all can relate. That's the great part about being on here. I hope you feel better and don't give up the fight. You're fighting to stay well, so it's worth it. Take care!
Vent away hun! We all get it and this is the ONLY place I have found people who do so far. :) My family is extremely supportive but I sometimes wish I had a third arm growing off my forehead or something so people could see me and go, "Whoa! Are you ok?! What is wrong??" No one can understand the pain we are in unless they have it too.
I really hope you have another streak of good days very soon! And I am so sorry you are having to deal with all of this. It stinks, and we know it! :(
Hugs and support,
Teri
Hang in there girl. I’ve been there. I have felt the same way. It’s not easy.
Just wanted to give everyone an update. I had been playing phone tag with my NL since Tuesday, and had become super frustrating and had made the headaches worse. I did get a call late Tuesday from the NS, they had set up an appt for Nov 15th. I was thrilled, even though it is weeks away. I finally got my NL today and he called in an RX, Butalb, Acetamin, Caff, 50/325/490. After struggling all day, I was so happy to get my rx and try it. Within the first 15 minutes I became very tired and thought that it was a good sign. I rested for about 2 hrs and woke up with the same headache. I think I was just so exhausted from the days events and stress. I tried it again 6 hrs later and here I am at 3 a.m. on the internet. So, I am thinking I may just break down and go to the ER. Which is a four letter word to me. Good news, I guess, is that I received a phone call from my NS today saying that they looked over my chart and wanted to get me in asap. By there standards that means a week from today. I have to say that I am relieved. I am stressing a little though. A few weeks ago I had had a Lumbar Puncture and after reading the DO NOT list, it scared me. The pain has been much worse since the procedure. So, right now I am trying to count my blessings that my NS is anxious to see me. I am hoping that that means she thinks she can help! Otherwise, I am going to try to rest until the morning and go to the ER.
What are some medications that has helped everyone? Narcotics and others. I just need some relief! This is a week straight of debilitating headaches. So much so, that I have not left my room for more than a bathroom break or something to eat. Which by the way has not been often. I am having a difficult time eating. The nausea has been horrible and this is the first time that that has reared its ugly head!
So, all in all, I am keeping my chin up (NOT LITERALLY.) Lol
Hi Nicolee,
So sorry you are suffering so.....I take the same for H/a's..Fioronal......gotta be careful with this med ..b/c it can cause rebound H/A's and for me anyway...I must take it ASAP when a H/A is coming on..if I wait too long..no help.
Thrilled the NS is seeing you sooner..I hope that gives you some peace and validation. Pls keep us posted on whats going on.
Peace,
Lori
So so sorry you are hurting!! It is literally one day at a time and sometimes one hour at a time for me. I just wanted to let you know about the Butalbital that the doc gave you because I've had a script for that for 5 yrs now. It's strange because sometimes it takes the edge off and sometimes it seems to make my headache worse. I hardly ever take it now and a different doc told me that it is highly addictive and you can easily get rebound headaches from it (not exactly what we need) :( I take Norco 10/325's every 4-6 hrs but it mostly helps with my neck and shoulder pain not my headache pain. I also ice the back of my head and neck for 20 min. at a time which seems to bring the swelling down. I'm still waiting for that miracle drug for all of us to take our Chiari head pain away but unfortunately I haven't found one yet. My NL just started me on a new med, Zonisamide that is supposed to help with the extra fluid I seem to create. Topamax didn't work for me so hopefully this will! It sounds like Percocet works for some people....not me :( I fought for a long time not to take narcotic meds but I just don't care anymore. If the Norco takes away even a little bit of my pain then I'll take it for the rest of my life. I'm here for you if you need to vent anytime girl!!
Take care,
Your Chiari Sister Susan
I hate to hear you are having so much trouble. I think many of us on here can relate to what you are going through...of course we are all different though. That's what we're here for...to vent to each other and get advice/support.
I have known about my Chiari for less than a week, so I'm not sure I can give much advice. But I find that in my lifestyle I don't always have time for a nap either. I keep a hot pad in my desk and when I start to feel a headache or pressure coming on I microwave it and put in on the back of my neck. That seems to delay it and make it feel better temporarily. I am like you with a high pain tolerance. I thought everyone got as tired as I did and battled to get out of bed like I did. I am glad to know it's not normal, I'm glad not everyone has to go through what we do...but you're right it could get worse (even though at times it doesn't feel like it).
Best wishes and good luck!
Thanks Ladies,
It is so amazing to have found such a great support system here. My friends and family are trying very hard to understand, but it's very difficult to understand unless you've been there. It makes it much easier to get through each day knowing that I have you all to understand and make you feel normal. Hope everyone has a great day :)
Hi,
I also feel that my symptoms cycle. I'm feeling good this past few weeks, with just a little nausea, mild headaches and dizziness, but nothing like it was weeks before. I was diagnosed in the spring, and I know I had two distinct cycles. I'm trying to figure out what makes symptoms worse. I don't eat heavy salty meals anymore, I think it brings on vertigo in the night. Of course, I try to avoid heavy lifting, as I think it brings on the pains in my neck. Keeping my neck in good alignment also helps, if I flex my neck back I get dizzy and nauseous, and have heart palpitations. I'm a nurse on my feet for hours. This has taken over my life as well, as I too, was very active, fit and I thought I was healthy. I'm 47. I am happy that I found others, like myself, dealing with this Chiari misery, everyone is sick of me talking about my issue and they don't understand. I'm trying the antiinflammatory diet, as I feel that keeping inflammation down around my neck,(bulging discs, and stenosis) keeps Chiari symptoms at bay. Maybe I'm just grasping at straws, trying to feel normal and good again. Surgery is not an option for me at this time, my NS wants to fuse my spine, and I won't be able to do my job as a nurse on the floor. Anyway, I guess I'm venting also. I'm also grateful for any advice, as this is life changing for me.
I actually had worked in the ICU and am not able to function properly, so I am off on work disability. I am lucky to have financial help. My boyfriend and I are living together. He is wonderful, but we wouldn’t be living together if I didn’t have this issue. I go a week or so, where I can’t even get out of bed, unless I need to use the bathroom or eat. Which I haven’t been doing much of lately. The nausea hit me for the first time last week. It is awful. I am not happy with our living arrangement and that puts stress on things too. He is very understanding and helpful, but I’d rather be living by myself. We do have a nine year old son together, which he is helpful there too obviously. Our situation is very complicated. It is so hard for me to see what is happening through my son’s eyes. It breaks my heart. He has had several nightmares about me dying. I have to constantly reassure him that I will be OK. I wonder if counseling would help him. I have always been one to explain in great detail everything that is going on. I don’t want him to have any surprises. I have also shown him the pictures on the internet and explained the malformation and what they would do in surgery. I want to try to make it less scary. I don’t know if I am doing the right things though. Any suggestions?
I find it very ironic, that you 2 are on gabapentin , and the drs think that is causing the symptoms, and yet those symptoms are WHY my nl prescribed it for me…interesting indeed
nicolee said:
I am currently on gabapentin. I had been taking 300mg 4x a day and when I called the NL he said to drop down to three. He thinks the meds are doing this. I am just so irritated. Thanks Abby for the support and the links too!
Abby said:
I take neurontin, gabipenten, is the generic name. It really helps with the pain, and sleeping. I would call and ask for it.
Honey, the reason your family does not support you, is they do not really understand what Chiari Malformation is. Folks are clueless and it is still so unknown. On the outside we look fine, but hurting so bad we can't stand it. You should educate those around you, with reading materials.
Some days are worse than others.
I am posting something for you to read and pass along. Hope it helps.
God BLess,
Abby
p.s. does it make you high??? It is weird sometimes i take it and i get no side effects, yet other times, it makes me higher than a kite!! I cannot function, I sit and drool like a zombie, and im on the same dosage 300mg, 3 times a day, but I only take it once a day as i have to work. I took one thursday night at midnight, hoping it would help me sleep. I slept alright and woke up high as a kite, I had to drive to work and thought if i get pulled over, I am going to be charged with impaired. I was like that till almost 4 pm. I hardly did a thing at work, and every one kept laffing at me cuz i was acting like a fool. I certainly dont think I could function taking 3 a day thats for sure!!