Aa
Constant Sensation of Rocking
I have this constant rocking sensation; like I am on a boat. Then, sometimes it feels like my brain is being shakened a bit at times and my eyesight becomes blurred. I can feel every vibration around me and when I walk it feels like a sway/rocking. WEIRD! If this any indication of how it feels being on drugs, yuk! I just wanted to know has anyone had this? This is actually the worst of the symptoms I am having. The newest one is daily occipital headaches when up out of bed. This just feels so surreal at times; hard to believe.
I will consider the USA option, but another problem will be costs. I have medical coverage in Belgium and not in the USA anymore. Plus, I have my hubby here to help me if I have the surgery; no one to really help me in the USA not like my hubby does.
Have to wait till March 8th though; uggg!
Have to wait till March 8th though; uggg!
I remember the fatigue...I used to have a nap everyday in the afternoon...and I used to feel so guilty that the kids were coming home from school and here's mom in bed. I just had to do it though b/c I couldn't get through the night if I didn't. Just recently since the surgery I have noticed that some of the fatigue has lifted which I'm crossing my fingers is a permanent thing!!
One other thing...something I found as there is a lot of ignorance with DR's where I live... once I found a NS and got the diagnosis and surgery, everyone seems to be a lot more open minded to helping me now. So, if you had to go to the states to get a diagnosis and surgery..you may find it easier to find help back in Belgium after. I just came in informed and confident with my DR and she was willing to accept that.
Anytime you need support..I hope you will continue to find it here :)
Carolyn
One other thing...something I found as there is a lot of ignorance with DR's where I live... once I found a NS and got the diagnosis and surgery, everyone seems to be a lot more open minded to helping me now. So, if you had to go to the states to get a diagnosis and surgery..you may find it easier to find help back in Belgium after. I just came in informed and confident with my DR and she was willing to accept that.
Anytime you need support..I hope you will continue to find it here :)
Carolyn
I feel better today. The weather here is crappy alot (rain, cold, cloudly, etc.) so it makes matters worse. We can't move just yet because my hubby is working his last year and then retiring, but then he has two kids (11 and 13), so.... STUCK!
I might have to go back to the US to get some help with this. The flight is about 12 hours long. The only thing is if I return to Belgium and have a problem later that will be an issue. So, I will have to find someone in Europe. I know about the physician in Spain, but there could be possibly someone in Belgium; I will ask the NS if he cannot help me. The physicians are not allowed to advertise here like they do in the US. So, it is all another physician's referral and word of mouth. I am hoping and praying that I have "the someone" who can help me.
My symptoms were bad yesterday. I usually sleep for 10 hours at least each day. I have been doing that for years though. Yesterday, I slept for about 12 hours. My husband and his kids probably think I am just plain lazy, but I am so wiped out all the time. I usually get some energy in the evenings; mornings the worst.
Today, not bad yet. I will see my family physician today for a possible strep throat infection.
Thanks for your support and concern.
I might have to go back to the US to get some help with this. The flight is about 12 hours long. The only thing is if I return to Belgium and have a problem later that will be an issue. So, I will have to find someone in Europe. I know about the physician in Spain, but there could be possibly someone in Belgium; I will ask the NS if he cannot help me. The physicians are not allowed to advertise here like they do in the US. So, it is all another physician's referral and word of mouth. I am hoping and praying that I have "the someone" who can help me.
My symptoms were bad yesterday. I usually sleep for 10 hours at least each day. I have been doing that for years though. Yesterday, I slept for about 12 hours. My husband and his kids probably think I am just plain lazy, but I am so wiped out all the time. I usually get some energy in the evenings; mornings the worst.
Today, not bad yet. I will see my family physician today for a possible strep throat infection.
Thanks for your support and concern.
You poor thing...having to deal with this in a foreign country just compounds your problems so much!!! I can't imagine having a language barrier along with everything else (although many dr's did treat me like I was speaking a foreign language!!)
If you don't get results with this NS..is there any possibility of coming back to the US for testing?
I really hope this dr is the one!!
Carolyn
If you don't get results with this NS..is there any possibility of coming back to the US for testing?
I really hope this dr is the one!!
Carolyn
I wrote down all 19, I think I am at 19 symptoms at this time. I wrote down all the medications, etc. I know what you are talking about. I just have to have the list re-written in Flemmish just in case this physician does not speak English very well. My husband is going with me; he is Belgian and speaks Flemmish.
The one ENT physician I saw was very insistent that I had Meniere's. I was a real "pig."
He started off the visit by asking me if I drank alot of caffeine, was a perfectionist or stressed. I thought it was an "ice breaker." So, I said yes to all the questions, and he went crazy. He went on and on about those are the reasons people have Meniere's. He came across as not liking Americans because we live fast pace lives, etc. He was a real ''NUT CASE." When the ENT testing was coming back ok except for the low tone problem I though then I was not dealing with Meniere's and told him that. He then stated "all you Meniere's patients act the same." He told me I was too anxious and needed to live a more calmer life, blah, blah. I mean I felt like I was truly in a twilight zone episode. All ready bad enough you are ill, but the way Belgians think about Americans to deal with too. Actually, the family physician was ok, but just an idiot.
One Neurologist stated in her report that I was "having difficulties" accepting Belgian life.
When I read that report I was really pissed. She wanted to put me on an SSRI and call it a day. Basically, "it is all in my head." She is right, but not the way she is thinking.
SO, to count, I have seen a family physician, two NLs, two ENT physicians, and spinning my wheels still. Oh, yeah, I had to ask for my own cervical spine MRI and a repeat of brain/head MRI after the family physician said "all the blood work is normal and your assessment is normal and started to give me "the brush off."
I told my husband, if he drops dead, I think I will be returning back to America. The experience here has been very mixed.
Sorry for the rambling. Thanks for the "good luck." I hope this one is different.
The one ENT physician I saw was very insistent that I had Meniere's. I was a real "pig."
He started off the visit by asking me if I drank alot of caffeine, was a perfectionist or stressed. I thought it was an "ice breaker." So, I said yes to all the questions, and he went crazy. He went on and on about those are the reasons people have Meniere's. He came across as not liking Americans because we live fast pace lives, etc. He was a real ''NUT CASE." When the ENT testing was coming back ok except for the low tone problem I though then I was not dealing with Meniere's and told him that. He then stated "all you Meniere's patients act the same." He told me I was too anxious and needed to live a more calmer life, blah, blah. I mean I felt like I was truly in a twilight zone episode. All ready bad enough you are ill, but the way Belgians think about Americans to deal with too. Actually, the family physician was ok, but just an idiot.
One Neurologist stated in her report that I was "having difficulties" accepting Belgian life.
When I read that report I was really pissed. She wanted to put me on an SSRI and call it a day. Basically, "it is all in my head." She is right, but not the way she is thinking.
SO, to count, I have seen a family physician, two NLs, two ENT physicians, and spinning my wheels still. Oh, yeah, I had to ask for my own cervical spine MRI and a repeat of brain/head MRI after the family physician said "all the blood work is normal and your assessment is normal and started to give me "the brush off."
I told my husband, if he drops dead, I think I will be returning back to America. The experience here has been very mixed.
Sorry for the rambling. Thanks for the "good luck." I hope this one is different.
That's right...I remember now..you are in Belgium trying to get a diagnosis, right?
The symptoms that Menerier's causes and the looking at the ear problems I have had with Chiari..are pretty much the same. I'm not sure if they disease runs along with Chiari or if they just cause the same stuff. So, unfortunately it very likely could be Chiari causing the problems and you were misdiagnosed.
Another piece of advice when you see your NS is to sit down one day and write down every symptom you have and bring it with you. I did that after finally having enough of being jerked around by my NL and I wrote it up and dropped it in his lap. Though it didn't get me too far with him when I told my NS about "the list" he was very happy to see it and it helped me a lot in getting a diagnosis. I have now realized that there is no shame in documentation, I have a book now that I carry to every appt. w/questions for that specialist and then after I record everything that was talked about. Then when I go to my PT, NL whatever..I can keep them all on the same page. That is about the only way I found to get them all to look at the big picture instead of just their separate areas.
Good luck on the 8th..
Carolyn
The symptoms that Menerier's causes and the looking at the ear problems I have had with Chiari..are pretty much the same. I'm not sure if they disease runs along with Chiari or if they just cause the same stuff. So, unfortunately it very likely could be Chiari causing the problems and you were misdiagnosed.
Another piece of advice when you see your NS is to sit down one day and write down every symptom you have and bring it with you. I did that after finally having enough of being jerked around by my NL and I wrote it up and dropped it in his lap. Though it didn't get me too far with him when I told my NS about "the list" he was very happy to see it and it helped me a lot in getting a diagnosis. I have now realized that there is no shame in documentation, I have a book now that I carry to every appt. w/questions for that specialist and then after I record everything that was talked about. Then when I go to my PT, NL whatever..I can keep them all on the same page. That is about the only way I found to get them all to look at the big picture instead of just their separate areas.
Good luck on the 8th..
Carolyn
Thanks for the information. I guess I just don't want to believe that Chiari's can be causing all the problems. The ENT testing has come back clean except for a problem with low tones, however, I was given a diagnosis of "possible Meniere's by one physician and Meniere's by another. Then, I started presenting with muscle twitching, abnormal MRI, etc. then I thought this is NOT Meniere's. The physicians I have seen over here have not been so understanding. It is difficult being in another country and then to have this happen.
Sounds like you may have either some more cerebellar or ear issues than most of us have. It seems that although we all generally have symtpoms that are alike, different ones hit different people harder.
For instance, I got the headaches all the time but generally I would call them functional headaches...I could still get through the day (with the exception of a few) and it wasn't fun but most weren't debilitating. However, one of my biggest problems was my legs to the point where it was difficult and painful to walk. My theory is some of the pressure that may have been focused in the head somehow distributed to my lower spinal cord..
So I'm wondering if this isn't just your body's way of dealing with the pressure...If you want to seek other answers maybe get referred to an ENT...Meniere's disease caused a lot of those things too. Do you have ringing or white noise in your ears?
Then again, too it could be the pressure on your cerebellum which is also responsible for balance and muscle coordination. I know it seems so long until the NS appt. but it really is only 1 week or so away!!
Carolyn
For instance, I got the headaches all the time but generally I would call them functional headaches...I could still get through the day (with the exception of a few) and it wasn't fun but most weren't debilitating. However, one of my biggest problems was my legs to the point where it was difficult and painful to walk. My theory is some of the pressure that may have been focused in the head somehow distributed to my lower spinal cord..
So I'm wondering if this isn't just your body's way of dealing with the pressure...If you want to seek other answers maybe get referred to an ENT...Meniere's disease caused a lot of those things too. Do you have ringing or white noise in your ears?
Then again, too it could be the pressure on your cerebellum which is also responsible for balance and muscle coordination. I know it seems so long until the NS appt. but it really is only 1 week or so away!!
Carolyn
I am having this annoying sensation of rocking; just like I am in the middle of the ocean on a piece of driftwood; driving me crazy. I had to take 0.5mg of xanax yesterday to deal. I don't have the intense pressure headaches like you all have, but I do have headaches. The headaches move all over my head. When I walk I feel like I am drunk alot. If I didn't have all the rocking I could deal, but...... Walking, exercise, etc. aggrevates it. I was having it on and off, but now it is all the time. I am trying to figure out how to get some activity into my day before I gain a ton of weight; gained 10 pounds in the last 6 months over this. I am still wondering is this Chiari's I am dealing with?
March 8 is when I see the NS, just seems so far away. All the other symptoms I have come and go, but the rocking is persistent.
March 8 is when I see the NS, just seems so far away. All the other symptoms I have come and go, but the rocking is persistent.
Yes i have the swaying feeling but its apparently because i do sway! Lol When i saw my NS last week he made me stand still with my eyes closed and he put his arms in front and back of me and kept telling me "I wont let you fall" but i COULD NOT stand still! He said i sway front to back and cant keep my balance. As for the brain shaking, i notice this the most right after i sneeze. It feels like my brain gets slammed into my forehead when i sneeze! But i also now know that my right artery next to my brain stem is "thumping" my brain stem every time my heart beats so yeah my brain is getting jarred around in there. No wonder it feels like its being shaken! I hope and pray this dr can help you! ~Shannon
I couldn't say it any better than you just described. I have the same vision problems too.
I have experienced a sensation similar to the swaying/rocking described. Almost like a pulse that is so strong it moves you. I notice it when I an sitting in a very fixed position for any extended period. It isnt constant, but more positional. I remember feeling this when I was very young, and just thought every one felt this.
Im not sure I have had the shaken brain, but I have had moments while laying down where my brain feels really weird (i guess shaken)and my body feels like it is detached with a floating rolling sensation, not really sure how to describe it. It happened more when I was a child while I was going to sleep, but I still get it every once in a while.
Something else that I cant explain, a strange visual disturbance. Almost like you go blind for a split second, or your vision just slips to the side for a sec, then comes back. I also had this once while I was working with my arms. I had turned my neck (apparently wrong) while extending my arm and weight in my hands. There was a sharp electrical sensation with it that went through my right side of my neck and down my shoulder. I had to stop what I was doing, it kinda dazed me. I thought to myself, what just happened? I tried to tell my boyfriend, all I could say was something weird just happened with me neck, it was scary. I also get blurry vision, it seems like every day. The later it gets, the blurrier my vision gets. Stacey
Im not sure I have had the shaken brain, but I have had moments while laying down where my brain feels really weird (i guess shaken)and my body feels like it is detached with a floating rolling sensation, not really sure how to describe it. It happened more when I was a child while I was going to sleep, but I still get it every once in a while.
Something else that I cant explain, a strange visual disturbance. Almost like you go blind for a split second, or your vision just slips to the side for a sec, then comes back. I also had this once while I was working with my arms. I had turned my neck (apparently wrong) while extending my arm and weight in my hands. There was a sharp electrical sensation with it that went through my right side of my neck and down my shoulder. I had to stop what I was doing, it kinda dazed me. I thought to myself, what just happened? I tried to tell my boyfriend, all I could say was something weird just happened with me neck, it was scary. I also get blurry vision, it seems like every day. The later it gets, the blurrier my vision gets. Stacey
Thanks for the information and support. You all are wonderful, caring people. I am glad I found this forum.
If I get through all of this ok, I am thinking about working and/or volunteering in Chiari Malfomation research, write a book or get on Oprah just to get the word out there.
If I get through all of this ok, I am thinking about working and/or volunteering in Chiari Malfomation research, write a book or get on Oprah just to get the word out there.
COMMUNITY LEADER
No, I am still awake : D
No worries....lol....I understand ur frustration and we have the same problem here in the states with drs not addressing the obvious....
I pray this NS is able to help u or has enuff sense to send u to someone who can !!
Many of us seem to have disk issues, I also have one .......but, I must say I have not found an exercise that helps....
Keep us posted on this NS visit.
"selma"
No worries....lol....I understand ur frustration and we have the same problem here in the states with drs not addressing the obvious....
I pray this NS is able to help u or has enuff sense to send u to someone who can !!
Many of us seem to have disk issues, I also have one .......but, I must say I have not found an exercise that helps....
Keep us posted on this NS visit.
"selma"
I go to Leuven Hospital in Belgium March 8 to see a NS. I am not sure if he would be considered an expert in Chiari. I just wanted a referral to a NS in the first place because I have a c4c5 herniation and the two physicians that I had seen so far (family physician and a NL) did not help very much. The family physician was trying to treat the herniation with injections; I had a terrible reaction to the medication. The NL thought that I just had unresolved labyrinthitis and gave me a paper with some exercises to do and didn't want to deal with the c4c5 herniation. As you see, NO HELP. BOTH SAW THE RESULTS OF THE MRI OF THE CERVICAL SPINE WITH THE CHIARI'S MENTIONED AND DID NOT ADDRESS IT! I got the actual report in my hand after seeing the family physician and NL. I was pissed to say the least and cried that evening to my husband after finding out about the Chiari Malformation on the MRI report.
At least I will be seeing a NS at a world reknown hospital; largest teaching hospital in Belgium. So, in other words, I am just trying to get my foot into the door and if this NS has not a clue I am 99.9% sure he will know a NS that does. I have read his background and profile; impressive. I just hope he can help me. That is my game plan.
Sorry, did you fall asleep after all that? Too much typing. Sorry.
At least I will be seeing a NS at a world reknown hospital; largest teaching hospital in Belgium. So, in other words, I am just trying to get my foot into the door and if this NS has not a clue I am 99.9% sure he will know a NS that does. I have read his background and profile; impressive. I just hope he can help me. That is my game plan.
Sorry, did you fall asleep after all that? Too much typing. Sorry.
I have had all those sensations too...mine come and go but sometimes hit me hard all of a sudden and I feel like I am diving for the floor. I have had the brain shaking feeling too and like Rod and Selma said, I am sure it is an combination of nystagmus and muscle twitching. I get a lot of small fine twitches along my head and face...
As for the drugs...if you are on some...they definitely make those sensations increase for me!! When I was on just t3's after surgery it was so bad that I could barely stand up straight. That is why I got off them as soon as possible!
Like the others said though, you may want to contact your DR. I know it is hard b/c most of us have new and strange things showing up all the time but it's better to be on the safe side....
Carolyn
As for the drugs...if you are on some...they definitely make those sensations increase for me!! When I was on just t3's after surgery it was so bad that I could barely stand up straight. That is why I got off them as soon as possible!
Like the others said though, you may want to contact your DR. I know it is hard b/c most of us have new and strange things showing up all the time but it's better to be on the safe side....
Carolyn
I take a medication called betahistine; actually prescribed for the "Meniere's" that I am supposed to have, it lessens the weird sensations, do not know how, but it does. I have my list of 19-20 symptoms I have ready for my visit to my NS March 8. I also have a bag ready for the hospital if I need emergent care if my symptoms become uncontrollable and/or unbearable. I have my husband's number always handy just in case I am having severe problems while he is at work. I have discussed with him the gravity of the situation if I do have Chiari. He sees me walking to the store, cleaning house, baking cookies and cakes so he has a hard time believing how ill I feel/am.
God speed your recovery.
God speed your recovery.
I have this and the PT and ENT say it is due to a slight tremor in my head due to muscle twitching in my neck. This combined with the Nystagmus that Selma has mentioned along with the loss of sensation in my feet mean I am overdependent on my vision for coordination. I feel people with CM should also be screened for Nystagmus witch is an involuntary eye movement that may not be visible during a doctors visit. The test required for a definitive DX is called a Videonystagmography (VNG)
Ray
Ray
I am like that alot in a day. I do notice certain foods or activities make it worse. I have had it everyday on and off for the last 3 months. I had been hospitalized when I had experienced it the first time. Had two MRIs of the brain/head and no one seems to see anything life-threatning r/t this pressure I have with the unusual sensations. I am not having seizures and/or blacking-out. Well, once in a while, I have felt like I was going to pass out, but I was not feeling pressure in my head. I cannot do caffeine, sugary or salty foods.
Hi, I get that feeling too. I say it also feels like your drunk. Thats how I explain it to the doctors. I hate this feeling I have it almost everyday. Its so not fun!!!
Alicia
Alicia
COMMUNITY LEADER
Yes I did have that as well...deff the sensation of the swaying.....I am not sure I wonder if it is part of the vertigo I was getting.....
The shaken or vibrating brain...yeah, that too, but none since I had surgery.....I wasn't sure if it was Nystagmus or not.....
Have u been to a chiari specialist?
"selma"
The shaken or vibrating brain...yeah, that too, but none since I had surgery.....I wasn't sure if it was Nystagmus or not.....
Have u been to a chiari specialist?
"selma"
This sounds all to familiar to me. I feel just like that when my prressure is high in my head. You should mention this to your doc, as high pressure can become dangerous. I don't want to scare you but you need to be aware.
Have an Answer?
You are reading content posted in the Chiari Malformation Community
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
