The doctor said 5-7 days, it should get better. But I wanted to see how long it has lasted with Chiari patients. So please let me know how long, and what you do to help cope with it.
I started getting vertigo for the first time yesterday and it was scary. I now know the difference between dizzy and vertigo. I was sleeping when I had my first attack, laying in bed my phone chirped and i rolled over to got my phone and my whole head spun around. I put my head down and went back to sleep. I was wobbly getting out of bed in the morning but not as bad as I had thought it was,so I went on with my day. I shoveled a bit of snow in the afternoon. Then my boyfriend and I had to go drive across town and back While across town sitting on a friends couch, while complaining of a spike in my neck pain when suddenly my brain went sideways and twisted. I put my head back and sat still and it stopped but it was the worst I have ever been dizzy in my life. It was like spinning in circles the stopping, only I was just sitting there.
This sent alarm bells off in me, I had been seeing a occupational therapist for my jaw pain. I saw her the day before yesterday and I think this is the cause of my vertigo. I have only had 3 visits with her, but I think that was too much. She has been doing strain counterstrain on my neck as well as jaw and other tender point therapy . I was really unsure about going to her but it is the only treatment I have been offered for my jaw pain. The counterstrain therapy she used on me was gentle so I thought it would be ok. However, she did move my head in all kinds of directions and i think that is why im dizzy, she messed somethin up in there.
Last nite I was trying to figure out what to do. I was having some anxiety after this and that made things worse I was nauseous and shakey. I was getting small bouts of vertigo with moving to fast ever since the bad attack earlier. I just felt like any moment it would happen again. I was talkin to my mom on the phone, so I tried to lay down and the dizzy came on strong. I was pissed, how am I suppose to sleep if i get it when I lay back? So i tried it again to be sure that was the case and it was, I couldnt lay down with out getting super dizzy. I called my nurse advise line, they said be seen in 4 hours. My insurance requires the call in order to get the services covered by my insurance. I went to the ER and didnt have to wait long to get a bed (even though I could lay on it). The doctor came in quickly as well, he asked me what happened and I explained how i had seen a therapist yesterday and told him as much about my neck issues I could. He quickly ordered a CT angiogram to check the vessels in there to make sure they weren't damaged or something (cant wait to get those films). They got me to the CT scanner quickly and I went to lay back after warning them, and got VERY spinny. They decided to send me back to get sedated. They had to give me 2mg (i think) of lorazapam to make me tolerate the scan. The scan came back fine and I was sent home with a script for motionsickness, and papers that say "you have been diagnosed with vertigo". There is also a paper that says refferral to a neurologist! I managed to get that after asking the doctor WHILE messed up on lorazapam. Total score for the home team. I wish I had more lorazapam cuz im anxiously dizzy and nauseated today. Tried to lay down after I woke up and it made me dizzy again so, not sure what to do. I have an appointment later today with my primary care.
Hi...the longest I ever had it was for 2 weeks....after that I was told to try non drowsy Dramamine ....it does help...also, I was told to slowly roll to one side b4 getting up and put of bed to help prevent the vertigo....not sure that helped as it is more for those with an inner ear issue...but, in case it was an issue, I did try it.
Try the OTC Dramamine and see if it helps u, it helped me...and I know the rocking boat feeling u get when u lie back...like everything is moving...no fun....u can not do nething and staying still is no fun either.
I went back to the ER earlier, I realized my release instructions said if the medication isn't working or making it worse, call or come back in. The Meklazine or whatever, wasn't helping anything but the nausea and I still cant lay down and my back is getting really irritated. I have been so uncomfortable for the last 3 days it seemed more like a week.
So, I went back and the ER an the doctor didnt seem know what to do with me after I told him I already had a CT angiogram. Thankfully the hospital I was at is top rated for stroke patients. He could tell I was very uncomfortable and tried Valium which was short lived and didnt help much compaired to the lorazapam, but I don't think they wanted to send me home with that. I asked for tylenol for my pain and after it didn't help, my pain got out of control and I started crying and let them know that none of it was working. The doctor was really busy, and when he came back he caught me crying. He told me that the ENT's have different tests they can do, and to go see them. He listen to my pain complaints and offered hydrocodone (bless his heart) and a Toradol shot for inflammation after suggesting it. He was nice and understood I wasn't well, not seeking meds. I just wanted to be able to be comfortable at home, not on the verge of constant tears from the exhaustion physically and mentally. And I have no primary care, I fired him so I wouldn't be seen till next week sometime by a new doctor. He gave me meds to take home and a ENT referral I am just so happy I got a referral, that is truly the best and most important part! Of course I really wanted to be comfortable, but really I want to find out what the cause is and I would have lived with out the meds, and and been very uncomfortable. And I am so thankful for all of the help and care the ER has shown me, I have a better outlook on the ER. Of course a Neurologist referral would have been more ideal, but Im sure the ENT will help me get one, when they realize that the problem is most likely neurological.
My ENT appointment is tomarrow. I had some relief from the Toradol shot, it seemed like I felt better after the shot took full effect, then it came back when It wore off. I cant do much with out feeling crappy and dizzy. When I get out of bed I get a mild vertigo attack for about a minute while my head adjusts. Laying flat has been bringing it on, and putting my head back. I am able to sleep on my left side, then after a few when things calm down I can roll over on my right side of my head. While I am up and awake I sometimes just feel like Im on the verge of getting vertigo and I have noticed that usually my right pupil is larger then my left when I feel like this. It doesnt feel like something that is just going away. My head just doesnt even feel normal, and I feel foggy headed constantly.Hope the ENT can help, hope it goes away.
No tilt table test yet, but I will mention it at my app. I have always had issues with getting light headed when standing up to quickly at times. My vision has gone black around the edges, and ears start ringing, mouth goes tingly for a few moments. I have passed out, but I can usually get back down before that happens. I dont know If it is related but, those are just things I have noticed over the years.
My BP was 150something when I went to the er both times and the doc told me to stay away from salt in the mean time. That was the highest my BP has ever been as far as I know. Usually in 110 over 70. My father has chronic high BP so I will just use his, good idea selma!
Update on appointment today. They did a hearing test first and it was normal. My right ear (the bad side) had a little less hearing then the left but not anything to be considered a abnormality. I saw the doctor and told him my history and onset. He did the tuning fork test and it was normal. He looked in my ears and they looked normal. He tried to look in my throat but I gaged on him so he couldn't see much, I assume. He took me to a different room with a table and had me lay down, first with my head to the left and then right. The left wasnt so bad at first but I was really flat so I started getting dizzy feeling like I was starting to get vertigo.The right side was terrible, It wasnt far into laying back with my head to the right that the vertigo came on strong. I calmed after a few moments but I was very uneasy, the doctor said my eyes were actually going in a circular motion while I was having the vertigo. I came back up and was really dizzy again, like everything had to readjust. It really exacerbated it and I feel pretty crappy.
So he I think is calling benign positional vertigo, but with the other issues I am having he is noting that he wants my pcp to send me to a neurologist, and I didnt even ask! I was so happy, but unhappy at the same time. I have been fighting for a neurologist referral for a long time now, and my last two doctors literally told me they didnt think I needed to see a neurologist. One doctor went to the clinic administration and requested I be switched from her care to a osteopath I had been seeing for lower back manipulations In the same clinic because I requested a referral for a neurologist. The doctor she passed me to denied my request and I kept seeing him hoping things would change, and they didnt. I had to fire him, I broke down In his exam room after a terrible visit just after I started getting vertigo. I explained to him that I would eventually need to either see a Neurologist, or expect that you are going to order my yearly MRI due in March and if you arnt willing to do either of those things then it would be a waste of our time. He said I could make another appointment and he would look over my information again, but i dont see a need to send you to a neurologist based on what I have seen. I fired him and I know the new doctor will listen to the opinion of the ENT.
The ENT also suggested vestibular rehabilitation therapy if the vertigo doesn't resolve or if I wanted to give it a try with the specialist he recommended. I said only as a very last resort, I will have to research it more before I even think about that. He also gave me a card for a oral surgeon TMJ specialist, which I would have to pay out of pocket for but I made an appointment for a consult this Wednesday, I cant handle the jaw pain anymore, and I was hoping the ENT might have some answers for that but unfortunitly not. Consult at oral surgery is $95 X-rays 105 but I have a x-ray so Im hoping that will help.
I didnt mean for this to get so long, oops!
Selma, my NS I went to said I was not in need of surgery, and that due to the fact that the fluid in my spinal cord being centrally located, it was in his opinion a prominent central canal, whether than a tiny Syrinx but the radiologist says it could be either of the two. He released me with no physical limitations and no answers to my questions. I have since found that I have borderline cervical spinal stenosis which I assume is further restricting the csf flow, and I am not diagnosed with Chiari, but In my opinion it would be considered Chiari0. My "tiny" syrinx extends from C3 to T-1 and is most prominent in the area of the stenosis in my spinal canal. Being that it appears centrally located, that means there is likely to be communication with the fourth ventricle, so the csf can go through the brainstem to communicate with the natural path of the central canal and you can actually seen this in my MRI's. I have read that syringobulbia is when the syrinx extends up into the brainstem and can even cause things like vertigo and other cranial nerve dysfunctions " like eye issues and jaw issues". This is my big concern, that my syrinx is enlarging and I have no NS anymore.
It is a tough long battle to fight, and sometimes I feel like I am going nowhere!
No dx, going to see oral surgeon wednesday, hopefully he can give a full dx. I am having limited ability to open my jaw, and severe pain when I yawn, eat, sometimes swallow. I do clinch my teeth but mostly during the day when I am in more pain than tolerable, nauseated of stressed. It is really driving me nuts, my teeth on that side are even more sensitive now. It is sharp stabby nerve pains, not muscle pain so nothing helps. I have been putting off treatment for far too long, not dental coverage.
The NS I saw in last March is a very well known Chiari specialist, and he felt it was a normal abnormality after a 10minute visit. I dont understand why he would let me come all the way across the darn state to tell me that but he did. He is the kind of doctor that feels like surgery should be left to the most severe cases, and I dont have a chiari malformation (as far as he is concerned). Im not bad off enough for him to even keep me as a patient, and I was released with no limitations. I plan to get a second opinion soon, I just need to figure out where I want to send my MRI's. I heard that you can send it to Colorado and get a review of your MRI's for $40 but it doesn't say anything on the website and I am nervous so I haven't called yet. Let me know if you know any more about how to go about doing that.
I am due for new MRI's this March, but I just had a neck CTA when the vertigo started. It stated "NO SIGNIFICANT ABNORMALITY" but I am going to get it and review it myself. I tried to get it today, but they wanted 33 bucks and to wait a couple hours so I have to go back for it later.
I am also frustrated at that fact that the radiologist of my March mri didnt note the cervical stenosis on my report due to it being borderline. 10mm and below they will note mild canal stenosis. I am 10.3mm so it only notes that I have bone spurs contacting the cord causing minimal cord deformity.
Thanks again for all your help Selma!
Ok, so now my TMJ is diagnosed by a specialist. Apparently the doctor I saw wrote a text book on TMJ disorders, very happy to hear this. He says my cartilage is displaced, and usually people get treatment before it gets this bad but thats what happens when the issue isnt addressed like it should be. The TMJ is one of the most complex joints in the body and dysfunction of it is grossly undertreated. Most doctors dont understand all of the things that cause these issues, and I didnt get this way overnight (sort of) It is a problem that is very deeply rooted in people with TMJ dysfunction.
The doctor explained to me that stress is the biggest factor in this problem. Almost every person with TMJ has caregiver type personality traits. We tend to have high levels of stress that we take on, with out dealing with our own stresses. When a persons stress threshold gets higher than tolerable, you tense your muscles or clinch your jaw. This is just how your body manifests the stress. When you are dreaming at night in your REM you are supposed to dream away your daily stresses and this is normal but when you are under too much stress for you to handle, you tense up in your REM cycle and wake with your jaw hurting. You try to do everyday things like eat, yawn, swallow, talk and you are damaging muscles that are already being damaged. Then after this happens for so long, the joint will be damaged. That is the point where I am at. So too much stress manifests its self physically at overwhelming levels. I also tense my muscles and jaw during the day so to me that says my stress has been completely out of control.
So the doctor explained it this way, look at stress as a book metaphorically. You have thick ones that might represent finances, another representing a relationship, maybe some thinner books that represent the things you do for other people ect. ect. All of the books stack up, my stack is too tall (and about to fall over) and my body isn't coping well anymore. The number 1 first line of TMJ treatment is eliminating the stress inducers that you can eliminate, lowering your stack of books. It makes so much since now to me, my jaw issues got way worse in June when my stress increased tremendously.
So to get things to calm down while I work on my dealing with stress, I am on a liquid diet NO CHEWING and I have to focus on not clinching in the daytime as well. This also means forcefully preventing yawns and not doing anything that causes pain until I see him in 2 weeks. He prescribed something to make me sleep hard to prevent clinching in rem cycle, and ultram for the pain. He said he Is hoping this helps the pain calm down, but I will likely need a procedure to restore the range of motion in my jaw.
Oh and the doctor I saw at the ER last time said avoid salt due to high bp and vertigo so it is a low sodium, liquid diet for now. I have been drinking two espressos a day and a medium dinner a lot lately, and cant eat hard food anyways so it wont be too hard. I don't really enjoy eating anymore anyways, between the jaw issues and stomach issues I have, it is just not as fun as it should be.
No, night guard suggestion as of yet, but he was very polite about not wanting to add more stresses like costs. He said I need an MRI but he pretty much knows whats going on with out the MRI so no point in spending $600 on something that isn't going to fix the problem. What a nice guy! The sleeping meds work differently then the guard because they make it so you don't clinch by relaxing you during your REM (I assume), with a guard it is only preventing damage from grinding.
I feel terrible sometimes after realizing how long my posts are, but I am glad I get it out of me and maybe others can benefit from my experience. I know when I Google search medical terms, many times I have found posts for this site (how I found it). Someone is going through as much pain as Im and searching for answers on the internet as we speak. It cost me $200 today to simply learn about what I can do about this issue and start a treatment plan but it shouldn't have come to this. If more doctors were as educated on this it could be easily prevented with life style changes and self awareness technique's and some anti-anxiety meds in my case (I have had a hard time with stress my whole life).
Selma, I want you to know that I am grateful for every time you respond to my and everyone else's posts. I have posted in other forums on here, and you respond more than anyone out of all the communities I have been in. You really make this forum special out of all the others. Thank you from the heart!
Stacey, u can get a mouth guard for very little if u get one for sports...the malleable one u put in boiling water....it is a lot less and if it works for u then u might want to go the more expensive Rt,.,..but my dentist said if I had an issue that is where he would start me off with bcuz of the cost of the other ones....true, and I think I did grind my teeth for a while, but no longer so it is not an issue for me....
Aww well thank u for the kind words....this forum means a lot to me, and I am just paying it forward, what they all gave me....
Never feel bad for venting, that is y this forum is here.....
So my Vertigo post is turning in to a TMJ oral surgeon thread, I so feel passed around at this point. The fact that I am writing about my oral surgeon appointment on my Vertigo post is enough to show how passed around I have been. I have been from my primary care passed to my osteopath, who passed me to PT, who passed my to occupational therapist, who gave me vertigo so I went to er (2 times), then ENT, then fired primary and went to a new primary who finally is passing me to a neurologist.
So while we wait for Neurologist, I saw the Oral surgeon again today to find out what kind of dance he wants me to do now, After two weeks sleeping pills and liquid/soft food diet, I am still hurting from everyday things like talking and the simple motions of chewing soft foods. He said "were you chewing?" Im like "you told me I could have scrambled egg consistency, I cant chew it a little?." What does he expect me to do when I cook for 3 people in my house most of the time, I dont want to cook for them and have to not enjoy what I prepared, so i ate some of the things I could like noodles and cut veggies into mush practically, I am trying but It really is not fun at all what I am going through. And no one else wants to just eat soup all the time, I know I dont.
So, to the point, this guy said I would most likely in the long run need surgery on my jaw,but he wants to see if they can prevent surgery by trying a special CHIROPRACTOR!!!!!!!!!!!!!!!!!! PASS ME AGAIN! He went on to say that they have different treatments like cold laser therapy and really he couldn't tell me what all they would be doing. Don't let me explain to him why I wont let them do any adjustments on me, he only responded with " he wont do anything that you don't feel comfortable with". I kept thinking to myself, that is what I thought about the occupational therapist till I got vertigo. I thought what she was doing was gentle enough but it was not. How am I going to know if something he wants to try on my doesn't make it worse and I dont find out until later like last time?
I am really disappointed I thought this doctor would be a good one, but now I am not so sure. He agrees I need a MRI to truely see what is wrong with my jaw but he is sure my cartilage is displaced. How can he allow a chiro mess with something that he himself is not 100% sure of.? I suppose that is why on my referral it says possible disk displacement. It states "please eval and treat as indicated". I do think he wants to help me, but expects me to be able to tolerate what the chiro will put me through. And he didnt seem to understand how scared I am to let anyone touch anything close to my neck. He also did not charge me for today's visit and refill my ultram, and said if I get a spike of pain after I run out of sleeping pills, then call him and he will refill it. I am out of my valium and don't see my primary until friday to address meds, I have to figure out how to explain to my doctor that I have been on valium, why and when I got this started, and why I want to keep getting them all with in 15minutes. Oh boy, so fun. That alone will be giving my anxiety and it does just thinking about it.
So, totally different topic. I missed a phone call from Seattle at 8am. No voice mail, so I called it back. It was a physician assistant for the NS I saw in Seattle. I sent a E-mail to the NS ( in December) I had seen in Seattle ,to address the cervical stenosis that was overlooked and getting an addendum on the report. I am hoping that is why he was calling but I am not sure why he didn't leave a message. I called back and left one back and then called the number on the voice mail to the main desk and left another message.
All this stress *****. The vertigo is lingering a bit still and I start to feel it with over stimulation. It is mostly dizzy spells now, but earlier I was sitting here and got a bit of head twisting again, totally stress inducing it. Great time to run out of Valium!
Well u r getting rung thru the mill that is for sure... unfortunately this happens all to often to all of us. I wish there was a way to avoid it...but I do not know how.
U r soooooo right to not want a chiro to manipulate ur neck....and I am not sure what a chiro can do for ur jaw that would not affect ur jaw in some manor.
As for ur question as to y the dr did not leave a message...HIPPA laws, unless u signed paperwork giving that dr permission to leave a message on a machine, they can not.So, it may be a pain, but it is the litigious USA that has driven us to this point.
Updating my own post, still having lingering dizzy spells. Last night I was squatting to clean my cat box and all the sudden lost my balance and almost fell backwards, I was squatting hunched forward. I have also been still getting a slight head spinning sensation with stress and over stimulation.
I went to the Magical Chiropractor that supposedly was the best at what they do yada, yada ect. I figured I would see what they would have to say about what they think is the cause of my pain and limited jaw movement. They reviewed my info, and a lady did a exam, and asked that I return the next day after her and the other doctor who specializes in jaw treatment.
I came back the next day and the lady told me that me atlas is out of alignment, and that studies have shown this can even cause the limitations of the jaw movement. This make a lot of sense to me, my pains come from the area of my C-1 transverse process so I wasn't surprised by this. I asked her what they do for that and she explained many different things they would be doing. They lady showed me a "drop cushion" or something of that sort, the function of it was for you to lay on one side head on pad then the chiro presses a lever or something and the cushion drop a certain amount. I know there was no way I was getting treated here. I talked more with the lady and explained how I have other parts of me out of alignment and my old osteopath adjusted my lower lumbar and it wouldn't stay in place. She went on to explain that some people's core muscles cant hold things in place any linger due to injury or if you have connective tissue disorder's you can be more prone to have your spine slipping out of alignment. I told her there was a good chance I have a connective tissues disorder and she said her patients with Elhers-Danlos have to come in more frequently due to their condition. The lady seems thrilled that I might be a long term patient (go figure) but in my mind I was never letting her touch me. I played it off like I was coming in for treatment but I really just wanted their opinion, that humored me a bit.
So I have been doing some research on percussion wave therapy as an option, but I am hoping my atlas will go back into place on its own. I have my appointment for the Neurologist on the 29th and I will discuss this with him. In the mean while my pcp was nice enough to prescribe clanazapam for my anxiety after a long talk about dependency, and my oral surgeon gave me more Ultram until I get to the Neuro. The combo is really helpful with my nerve pain, and it truly is amazing that I finally am getting some treatment for my pain.
So I am on the right path, but my insurance is getting cut off at the end of the month unless something the Neuro has to say is enough to say I have limitations and need insurance. My fair hearing is set for April 13th and I have to make sure I have all my new records in by then so that I have them in behalf of my case. I have to do a fair hearing because my last doctor's eval said I wasn't as limited as the first eval, so I am fighting for the benefits I received from Jan to end of March. I was suppose to receive a new evaluation but that didn't happen. So I am looking at having to go back to work, I cant afford self employed insurance so I will have to go work a real job if I want any decent health care.
Also update on my eye's I had my glaucoma test again to see if there are any changes. There weren't any but I still have to be monitored in a year to check again, so I am still suspect for glaucoma. I discussed with the eye doctor that my right pupil had frequently been larger than the left, particularly when I am feeling more dizzy and weird in the head. She told me to tell the neurologist about it but that my eyes were function properly right now, but that doesn't mean that there isn't something else going on in there.
So thats my update,super long once again. Stacey
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