I had constant vertigo and dizziness before my surgery. When it got really bad I took valium, usually 2.5 mg, and it helped take the edge off. I've also been told klonopin can help but i preferred valium. At one point during my search for what was wrong with me I was put through vestibular testing which made my vertigo symptoms horrible for 2 weeks, then they had me start vestibular rehab which made my symptoms bad again. There was a period of 2 months when I couldn't sleep through the night without waking up feeling like I was on a raft in the ocean during a storm, then I would move my eyes and things would just keep moving.....it was awful. Valium, being a CNS depressant, did help calm things down a bit.
My vertigo has greatly improved since surgery.
Vertigo is a common issue for those with Chiari....I had one spell last 2 weeks.....I have not had any since my surgery.
I tried all sorts of meds for it and nothing really helped me....we are all different and you may respond to something which I did not....I was given antivert and some others I don't remember any more....looking back and now knowing antivert is an antihistamine I can see that it may help someone as so many of us do have issues with too much histamines ....I now take an antihistamine every night b4 bed,,,,,I do sleep better and have less PND and reflux.
Dizziness and vertigo are different....I had both and vertigo is more disabling then just being dizzy.....
I hope this is helpful.
Thank you for your reply. With the condition of CM and vertigo being part of it, are there medications you know which can help?
I have CM and have found that people with CM also have vestibular problems and balance problems- it makes sense that you would experience vertigo.
Please get a second opinion (my experience, I have severe constant headaches along with vertigo issues so it is a different situation!) I have spoken to several CM sufferers that experience no headaches but have vertigo. Your doctor seems unimpressed by the chiari diagnosis, and I may go see a doctor that has more experience that will help! Sometimes when doctors are not experienced in a specific area, they do not tell you but with brush off your symptoms! It is quite frustrating.
Best of luck to you!
Sorry, I forgot to mention, thank you for welcoming me to the Chiari forum, it's nice to know I'm not alone. Another question I have if dizziness is my main problem what could a Chiari specialist suggest as treatment? And what is a Chiari symptom cycle?
Thank you
Hi selmaS,
From my MRI it showedI 3 bulging discs in my neck. Physiotherapy has not been helpful hence why I went to a chiropractor. He won't crack the spine, he gets me to do stretching and movements of my neck and the pain has reduced. I thought my dizziness was a combination from my migraines and painful neck, but both areas have improved, so after reading the comments here I realise it could be from the Chiari. So far I have seen 3 neurologist and 2 thought I have Benign positional vertigo ( which I may have had) and one said its from my migraines. I'm not sure how to find a neurologist specializing in Chiari. I get scared at times with my dizziness some days when it's worse, especially if I'm tired, will I get vertigo/ spinning of room from my Chiari? and therefore not able to do my daily activities. I do get blurry vision some days - had my eyes checked by optometrist who suggested glasses. Some days I feel as my brain wobbles in my head when I move, and have tried to ignore the dizziness which isn't easy. I like to learn more about Chiari as I feel the doctors here don't know much about it. I'm from Sydney Australia.
Thank you.
Hi Pkath and welcome to the Chiari forum.
Anything can trigger Chiari symptoms to flare......some can go their entire life without symptoms while others deal with daily issues.
Those with Chiari are suggested to not have a chiropractic adjustment as it can possibly add to our symptoms and issues.
It may be the Chiari causing your dizziness, but only a true Chiari specialist would be able to tell you that for sure.....have you had other related conditions other then the Syringomyelia ruled out?
Hi and welcome to the Chiari forum.
If your Chiari is being monitored 6 months is the typical time frame to check for changes.....however, it is important to let the Dr know if there are any new or changes to current symptoms....which may happen a lot as Chiari symptoms cycle.
What other testing have you had? a CINE MRI, full spine MRI's? I expect since you were DX'd with Chiari II you had a lumbara MRI? what related conditions were ruled out? When were you DX'd?
Yes , vertigo is a symptom of Chiari.
I have chiari but not many answers. Ive just had my second lot of vertigo start today and wondering whether it is related. My MRI report says chiari type 2 malformation, significant herniation, 25mm. How often should i have an mri scan?
thank you for the list i will take a look at it.
Only going to say that all physical therapy was GOOD for me. Good luck!
Hi and welcome to the Chiari forum.
Well u will have to look at ur diet and eliminate those things that may trigger a flare as u mentioned salt is something that adds to ur issues....
With IBS,m many of us have it, but it can be for different reasons, so b4 u take nething talk with ur Dr, and have some testing it may be as simple as adding magnesium as a supplement..
We do have a list of Drs in Canada.....that other members have been to and liked...the list is not a referral or endorsement, u will need to research them, but the list should give u a starting place.
http://www.medhelp.org/health_pages/list?cid=186
Hello everyone. i was just diagnosised chiari type 1 malformation 5mm. not much i know but have had severe stabbing pain on the left side of my head for three years. this has been getting worse over those years. worse when i have had to much salt, my period and when i'm hot. now i'm having more episodes of dizzinesss. i had an MRI done and told i still need to see a neurosurgeon. i live in canada, so i don't know if there are any specialists here. does anyone suffer from IBS with this condition? i saw it in the sympotoms and i do. wondering if anyone can suggest was to help stop the ibs and dizziness?
There are many of us, that feel exactly the same way...once u find a Dr that is a chiari specialist u will see a difference.
I hope u stick around and share ur chiari journey with us.
"selma"
I was just happy to find a place where there are people like me. I have been told for so long that it was all in my head and was ignored for so long that I was beginning to believe what I was being told. Thank you for the welcome. I do have some questions and when I do go through the introduction and figure out how to use the sight properly I will ask them.
Hi and welcome to the Chiari forum.
Shane99 is not a reg participant on this forum and this being an older thread, if u would like to talk to him, click on his name and select private message and ask the questions, that way he will get an e-mail notice that someone is trying to contact him.
From what I have read, ur experience with the medical profession is similar to what many of us have also had...we have dubbed it the "royal chiari run around"
If there are questions u have or ne way we can help, start a new thread so it gets more attention....as this is an older one.
"selma"
I, too, have a Chiari Malformation. The symptoms first made an appearance in 2001. I was sent to a neurologist who I gave some family history such as cancer, diabetes and the fact my brother was being tested for MS. He did some simple tests on me and asked me to walk a short distance for him. He sent me for a CT scan. He then sent me to an ENT who listened as I gave the symptoms that I was experiencing and also performed some of the same tests the hearing clinic had done on me. He then sent me for a MRI on my ear. After seeing the results, he decided to send me to a balance clinic at one of the hospitals within the health region. Here again the specialist felt the results were not consistent with Meniere`s or anything else that he understood. At this point I had two specialists who concluded that it was all in my head and I was craving attention. For ten years I lived with that belief by medical professionals (other than my family doctor).
In 2008 I developed more severe migraines. I had them as a teen but nothing like these. They had virtually disappeared throughout most of my adult life. At this point they returned with a vengeance and I was having migraines once a month and they would last for one week. The auras were not always the same. Some were the same as when I was a teen (I would have warning), but others were different (no warning what-so-ever). I finally asked my doctor for medication for migraine prevention and asked whether I should be having a CT scan or MRI on my brain to determine if there was an underlying problem. In 2009 I had both the CT scan and the MRI done, each with an undetermined result as there was an area around my cerebellum which was unable to be read clearly. After the MRI in 2010 I was sent to a neurologist to be looked at. He then sent me to an ENT who specializes in vestibular problems (which it was believed to be). The ENT was not convinced that the issue was vestibular and felt it needed to be investigated further as a neurological issue. He examined the results of the MRI and the notes made by the neurologist and sent to a neurosurgeon that specialized in these sorts of problems.
Before meeting with the neurosurgeon I was again sent for balance testing again. This involved hooking me up to a head set (seemed similar to a virtual reality helmet) and having my eyes follow a red dot on a bar. She also had the helmet on while I kept my eyes open and then she would lay me back fast either head to the left or to the right. The tests went on like that and they included putting warm water into my ears and doing the same manoeuvers. The whole time the machine was monitoring my pupil movement for fluttering.
Finally in 2011 I met with the neurosurgeon who checked the MRI results and the balance testing and concluded that I had a Chiari 1 Malformation. I have a diagnosis; it is not all in my head. After ten years I was even beginning to wonder. The neurosurgeon ordered another MRI because the one he had to look at was almost 2 years old. He did some of the tests on me again. Upon looking at the first MRI he concluded the malformation should not be causing the severity of the symptoms I was having and that surgery was not warranted because the cerebral tonsils did not extend down into the spinal column far enough.
Here I am awaiting another visit with the neurosurgeon. I spent 7 months last year incapable of driving and unable to walk without either canes or a walker. I again suffered many migraines. These migraines involve the world spinning at an unearthly speed. They come on without warning and make me very ill. As a result, I also burnt my throat with acid from my stomach and lost my voice for 4 months. In the last three weeks I have had two horrific migraines to the point that I have had to ask someone to come to my place to come and get me some water so I could take medication. I have had to crawl in my house because I was unable to stand up with my walker. At the onset the only thing preventing me from falling to the floor was that I was in the corner of my counter and was able to use my forearms to hold me in place until I was able to get enough stability to get my walker (and then it got worse). The second time it happened I was sitting in my loveseat and knew better than to try to get up. This is very disrupting for my life.
Hi! I like Shane am a zipperhead. I had surgery 5 month ago and am doing much better.
I would have vertigo only a few times a year but it would be so bad that I would have to
lie down for a while because the room would be spinning so. i always thought that mine
was allergy related and seasonal. I never had a problem with headaches, only neck, shoulder and severe aching of my arms. I would have ringing in the ears sometimes but
again thought it was sinus problems. Chiari causes so many different symptoms and
no one seem to have all of the same. I agree with Shane, find a Chiari specialist, not just
any NS will do. Best of luck to you!!
p.s.
I have not had vertigo since my surgery, but it's only been 5 mo's
Don't worry about sounding whinny. As misunderstood as this is, we have to be our own advocates. If you feel bad, you feel bad. You have to make sure that you're heard and understood. Remember that the Doctors works for you.
It's important to know that there is no cure for Chiari. The surgery can help with symptoms, but you will always have it. Chairi isn't considered life threatening, but it is life altering.
Thanks...you all have provided very good information for me. Maybe it is my neck causing these issues?!?!? I was in a MVA a little over a year ago and had whiplash. It only bothered me for a couple of weeks and then suddenly went away. Who knows...I am going to follow up with a second opinion. I hate to sound like I am whining but this is really a miserable experience and it makes it difficult for me to do the normal things that I have always done, like dishes, laundry, sweeping, etc...
Hello to everyone,
My daughter has Chiari and has problems with dizziness. I have had her to 2 chiari specialists. Both agree she could have the surgery but it is not a rush. Her herniation is pretty large but it is very thin and long. It is 1 cm.
Her doctor sent her for what is called vestibular testing. It was an all day event. It involved an extensive PT exam, ears, gait study(really cool) where they hook you up and you look like a stick person and then the motion tests, rotational chair and different things of that nature.
All her tests came back normal. the doctor explained that usually with chiari something will come back abnormal. She does get headaches though. He sent her to a neurologist and from what i gather is a very respected doctor where she had a EEG done. That also came back normal.
He then told us there is a certain kind of migraines that will cause these symptoms. You do not have to have the severe migraine pain but can experience vertigo or dizziness. he put her on a very mild blood pressure medication which is very helpful with these kinds of migraines and it seems that her dizziness is getting slightly better.
She goes back around Sept. for the vestibular testing again. She is actually in a study at Du Pont childrens hospital in Delaware for children with chiari who are having dizziness problems. They are actually conducting a study on this problem. They want to see if there is a big difference in the children who have the surgery and the children who do not. While she is particiapating in the study the people are not allowed to know whether or not she has had the surgery. It is like a blind study to them. We are not allowed to mention it and she has to wear a bandana around her neck so they cannot see if she has a scar or not.
Beacause all her tests came back normal her surgeon is not rushing the surgery because if he does the surgery he wants to know that he will be helping to relieve a symptom and not just doing the surgery because an MRI says it is there.
I think that you will have to look around for a doctor that you feel comforatble with and one that will look at all options before they rush you into any kind of surgery that may or may not help.
I have bouts of vertigo myslef so I know how they feel. I went down already and I have to say that was very scary. I do not have chiari but I do have DDD in my neck and I honestly feel it comes from that. It seems like when I am having problems with my neck my vertigo will act up.
Take care and I hope you find the right doctor and help that you need.
Chadry
I feel comfortable saying that the vertigo IS a symptom of the Chiari!!! The neuro-ENT is "confident" my issue is a "neck" related issue and the neurosurgeon is "confident" that the vertigo is vestibular. The "neck" issue makes sense because my brain is protruding into the spinal cord, which is in my neck!?!?! The neuro-ENT is not seeing me anymore because of his theory of the neck issue and the neurosurgeon thinks I need to be seeing the ENT!!!! I am out of work on FMLA and have no clue who should be following me except for the physical therapists!!!! This is frustrating for me because I just want my quality of life back!
Welcome to the forums, I too am sorry you have to be here, but we are a comforting site and we try to answer as many questions as we can.
As to what everyone has said, I'm blushing, thanks everyone.
In the advice section: I think everyone has pretty much said it all :). Yes, you need to get a second opinion. Most regular Doctors and a depressing number of neurologists and neurosurgeons are unaware of Chiari and its related problems - or barely know of it. You need to find a specialist. We have a thread here with a lot of Specialists or at least Doctors that we are comfortable with. Check it out and see if any is near you. Unfortunately you need to be prepared to travel.
Vertigo is a common symptom of Chiari. With Chiari your cerebellum is being squeezed into your spine because it doesn't fit in the bottom part of your brain - basically, your brain is too big for your skull. The cerebellum is the part of the brain that controls sensory perception, coordination, and motor control. The squeezing can cause damage. Therefore, YES! It can cause vertigo, vision problems, headaches etc. But it doesn't necessarily have to cause headaches or any given symptom.
Not to scare you, but I think it important to understand; You also (as mentioned above) need a CINE study and MRI's of your spine. One of the major related issues with Chiari is a blockage of spinal fluid (CSF) called a Syrinx. This can lead, if unchecked, to paralysis. At 9mm, your herniation is large enough to start a Syrinx.
After my surgery I did vestibular therapy and was actually surprised to see that it does help. I still get dizzy, but the therapy (also called "Fall Prevention") teaches the subconscious mind to catch subtle hints before you fall or lose your balance and I find that the number of actual falls I've taken has substantially decreased since I took it. I still get dizzy, I am just able to control it to a better degree. I walk with a cane and I can "catch myself". Or if its really a bad one, I can sit down on the ground rather than fall down.
A couple of things to avoid though; Chiropractors and Massages. Message therapists might be okay, but only under the order of a Chiari Expert.
Hi Alice- I am peachy, I also have a 9mm CM, I also have vertigo but I tend to list to the right, my problems have been going on since about 2004 or so. I totally understand you are freaking out right now and yes you have every right to. I don't have any ENT issues so I am luck in that department, I have also has vision issues. I can relate to what you are saying in your post on several levels as I am sure most people that have chiari can. I am not a specialist. I know what Dawn was saying by hoping that Shane would see this and reply, Shane is a "zipperhead" Shane has been there done that, he is one of the most knowledgeable chiari people I know, and if he says it you can pretty much take it to the bank. The fact is, many many great doctors are not up to speed on CM, even though they are great doctors, they don't have the latest information this issue or how to treat it, honestly it's my opinion that anyone with this problem who is experiencing issues needs to be seen by someone who is a specialist in chiari. Sorry for the reason that you are here but please know you are welcome.