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Complex Migraines and Chiari
So I went to see my neurologist on follow up and my MRI are clean though my tonsils are too far down but they aren't blocking anything etc. So he is wondering if they are complicated migraines. I was wondering, has anyone had migraine problems with chiari?
Thanks Selma! I went completely paralyzed yesterday for several hours, and my left side is hardly working now. I'm going to try and see the chiari specialists up in Seattle. I'm pretty worried. I'm not sure how its tight but the CSF flow is fine either. I'm going to see if I can email the MRI to the doctor. I'll try and post them here too when I get them.
COMMUNITY LEADER
When u said ur neck goes out, I thought deff EDS issue there....and from the rest of what u r saying I would deff get testing for EDS.
The fact u go blue like that is concerning, can u get someone to video that so u can show a Dr, I know we can not show a Dr the symptoms on command and if they do not see it, they do not feel we have it....sigh....
It could be CCI.....I had the electric shock sensation in my feet, when it started I thought it was coming from a pair of boots I would wear, so I stopped wearing them....lol...now I know it was not my boots....but I no longer have that issue.Haven't worn the boots tho....lol..I will have to try it.
Not sure how CSF flow is fine but tight?....mayb I am not understanding....the thing is many are told CSF flow is fine except for the posterior area which is where the cerebral tonsils are and that is where it is a problem for us.....so do review ur reports to see if what u r being told matches the report....
I'm thinking I might just have to make a trip up there and see what they say. I'll see about working with my NL here first and see if he understands any of the things you suggested and can find a cause, but we'll see.
Well apparently my CSF flow is fine though its "tight" and my tonsils are lower than they should be. My neck goes completely out, and then all my nerves start freaking out, and thats when I get them. When I have the attacks my head whips back and forth about 3 times per second. When I'm having them my extremities start falling asleep and turn slightly purple. I'm always dizzy and have really bad vertigo, my head hurts all the time too, and my neck as well right next to where I had the surgery. When I'm feeling pretty good I can touch my ear to my shoulder without raising it but when my neck is out I can barely move it because its so stiff, then it hurts a lot, and my head and other parts feel numb and I can hardly move them. I pop my neck a lot so I can move it better, and I'm always super dizzy afterwards and I get those lightning bolt feelings from it that stun me for a minute, and then its really sore... I'm not sure if that sounds like CCI.
I read about EDS that sounded a lot like what I have with my ribs and neck when it keeps going out. Basically if any part of my body has gone out it will continue to go out from then on. I can train my body to be double jointed without really trying. (My thumbs are now completely reversible for example.)
I'll ask my NL.
Well apparently my CSF flow is fine though its "tight" and my tonsils are lower than they should be. My neck goes completely out, and then all my nerves start freaking out, and thats when I get them. When I have the attacks my head whips back and forth about 3 times per second. When I'm having them my extremities start falling asleep and turn slightly purple. I'm always dizzy and have really bad vertigo, my head hurts all the time too, and my neck as well right next to where I had the surgery. When I'm feeling pretty good I can touch my ear to my shoulder without raising it but when my neck is out I can barely move it because its so stiff, then it hurts a lot, and my head and other parts feel numb and I can hardly move them. I pop my neck a lot so I can move it better, and I'm always super dizzy afterwards and I get those lightning bolt feelings from it that stun me for a minute, and then its really sore... I'm not sure if that sounds like CCI.
I read about EDS that sounded a lot like what I have with my ribs and neck when it keeps going out. Basically if any part of my body has gone out it will continue to go out from then on. I can train my body to be double jointed without really trying. (My thumbs are now completely reversible for example.)
I'll ask my NL.
COMMUNITY LEADER
I do not know a lot out ur way...Dr Oro in CO....and a Dr Ellenbogen in WA.....
Well the odontoid can affect CSF flow even with removal of some bone.....I can explain it in more detail .....the best way I know is to take ur pointer finger and make a tight circle (ok)so instead of on the tip of ur thumb ur pointer goes down to the bottom of the thumb.....now take the pointer of ur other hand and pointing toward u from the bottom up place ur finger in the hole...ur first joint of that finger should rest on the other finger.....notice there is space behind that pointer....now slowly turn the finger away from u , notice how the space grows smaller...imagine if ur cerebral tonsils were in there as well....the space gets very tight.
Another possible issue could be CCI...cranialcervio instability....most with this also have EDS. But this condition creates a bobble head situation,..making one dizzy, and it is painful.
All related conditions should be ruled out....syringomyelia (in all areas of the spine) EDS, ICP, POTS, CCI, sleep apnea....disk issues, thyroid (auto immune) we tend to be prone to autoimmune and connective tissue disorders.....but the ones that are most important to rule out are the first 6 I mentioned,
I'm absolutely sure I don't have epilepsy. My attacks are nothing like normal seizures. I haven't been checked for sleep apnea though. My NL is retiring in 3 weeks, and I'd like to find a Chiari specialist in Utah, or around Spokane Washington if possible.
They haven't done anything with the tonsils that I know of. I don't think they checked that other thing either. Is there a list I should have them check? My NL called me after his review and said it looked really tight but when I visited him he said that the skull amount removed was adequate and it wasn't blocking the CSF so I don't know. So confusing...
They haven't done anything with the tonsils that I know of. I don't think they checked that other thing either. Is there a list I should have them check? My NL called me after his review and said it looked really tight but when I visited him he said that the skull amount removed was adequate and it wasn't blocking the CSF so I don't know. So confusing...
COMMUNITY LEADER
No worries....have u ever had a sleep study? with stop breathing u should check into that...as it may be part sleep apnea.
Have they ruled out epilepsy? Some have developed this postop.
U said the area was tight....did they cauterize the tonsils? or remove them?
And did they look to see if u might have a retroflexed odontoid that could be making the area tight?
Thank you guys so much for the support! I'm sorry if I've ever come across as being rude. I'm just so frustrated! So this is my story in a nutshell. I was having major symptoms 6 years back and most of my life. I was going paralyzed in my left side and had such bad vertigo I walked like Jack Sparrow plus the headaches, tingly and numbness etc. I got surgery and two weeks later I contracted Staph Bacterial Meningitis plus a CSF leak. Nearly killed me. I was in the hospital for about a month and basically didn't leave my room for over 6 months because I was so sick.
So about a year after my surgery I started dropping. My body would just lose all mobility and I would fall paralyzed for several minutes. I had an MRI and EEG and everything was fine. It continued to get worse and all my symptoms came back. Fast forward to now (I could never find a doctor who believed me, and was told I had need to see a psychiatrist.) I now have these attacks that last anywhere from 15 minutes to over 14 hours, and I can have them days on end. The attacks look like Grand Mal seizures with excessive flailing. My whole body contorts, and I have pulled several muscles and ruptured tendons. If I wasn't on heavy padding I probably would have broken several bones already. I'm usually awake but extremely loopy and I can pass out. My breathing is erratic, and I have stopped breathing several times. I completely forget who I am and everything, I've gotten better though at remembering things, but for a while afterwards I completely forget things that have happened, and most people. Its not very much fun, and I'm usually in pain for a couple weeks afterward. I only have these attacks when my neck and back are out.
When I'm normal, I have limited movement in my left side, and it often goes completely paralyzed. I have never stopped having headaches, and I don't take any medication for it because I'm used to it and it makes me sick. Most food makes me nauseous too. I have pretty bad vertigo, I feel like I have electricity running up and down my body. My extremities like fingers, toes, and tongue are always itchy. Sometimes if my neck moves too much I feel like I got struck by lightning.
I have attacks in my sleep, and I can't wake myself up. When I finally do, I'm exhausted like I ran a marathon, and my whole body is tight and sore. These ones scare me the most, because when I'm awake I have a very limited control, and when I'm asleep, I have none and thats when I stop breathing the most.
Anyway, I know this is long, and I can't remember all my symptoms. My MRI from my doctor shows that my cerebellum is lower then it should be, and that its "tight" but he can't take out anymore skull, and the CSF flow is fine. My back neck, and all my bones go out all the time. I used to see an chiropractor who hammered my ribs back in twice a week but it never made any difference because the next day they would just go back out. The only thing that helps is rest and cranial manipulation by an osteopath.
So about a year after my surgery I started dropping. My body would just lose all mobility and I would fall paralyzed for several minutes. I had an MRI and EEG and everything was fine. It continued to get worse and all my symptoms came back. Fast forward to now (I could never find a doctor who believed me, and was told I had need to see a psychiatrist.) I now have these attacks that last anywhere from 15 minutes to over 14 hours, and I can have them days on end. The attacks look like Grand Mal seizures with excessive flailing. My whole body contorts, and I have pulled several muscles and ruptured tendons. If I wasn't on heavy padding I probably would have broken several bones already. I'm usually awake but extremely loopy and I can pass out. My breathing is erratic, and I have stopped breathing several times. I completely forget who I am and everything, I've gotten better though at remembering things, but for a while afterwards I completely forget things that have happened, and most people. Its not very much fun, and I'm usually in pain for a couple weeks afterward. I only have these attacks when my neck and back are out.
When I'm normal, I have limited movement in my left side, and it often goes completely paralyzed. I have never stopped having headaches, and I don't take any medication for it because I'm used to it and it makes me sick. Most food makes me nauseous too. I have pretty bad vertigo, I feel like I have electricity running up and down my body. My extremities like fingers, toes, and tongue are always itchy. Sometimes if my neck moves too much I feel like I got struck by lightning.
I have attacks in my sleep, and I can't wake myself up. When I finally do, I'm exhausted like I ran a marathon, and my whole body is tight and sore. These ones scare me the most, because when I'm awake I have a very limited control, and when I'm asleep, I have none and thats when I stop breathing the most.
Anyway, I know this is long, and I can't remember all my symptoms. My MRI from my doctor shows that my cerebellum is lower then it should be, and that its "tight" but he can't take out anymore skull, and the CSF flow is fine. My back neck, and all my bones go out all the time. I used to see an chiropractor who hammered my ribs back in twice a week but it never made any difference because the next day they would just go back out. The only thing that helps is rest and cranial manipulation by an osteopath.
COMMUNITY LEADER
I can understand ur hesitance with the meds if u r having adverse reactions.....most meds do not help prior to surgery, unless u have ICP a med like DIAMOX can help reduce the amount of fluid that builds so it does help with the pressure....
But ur Drs should understand there is something going on each time u try a new one....and be cautious in introducing something else until u have more answers.
Keep us posted on what u find out <3
If you have tried a lot of meds and nothing works then it is time to go to a chiari specialist if you have not already done that.
If you want to continue with the meds then try to start them in ridiculously small doses and increase slowly.
What symptoms do you have actually?
If you want to continue with the meds then try to start them in ridiculously small doses and increase slowly.
What symptoms do you have actually?
Your story makes me sad to read. MANY of us, in fact most of us have been told every thing under the sun including Migranes, and put on multiple medications which don't help and do have harmful side effects as you see.
I actually had a NL document that my Chiari was not the cause of my headaches either. Really? They always say that. My daughter was told the same thing and suffered for years due to ignorant NL's!
"Complex Migranes" really? Ask him WHY. They never seem to have a logical answer for that. The truth here is this...
You have an identifiable cause on your MRI. Your true diagnosis has already been made clear. Stick to what you know to be true. Anything else is purely speculation and a distraction to the treatment you need. Dr 'a will take you on a medical merry go round if you let them.
See a NS who specializes or is at least very experienced with your condition. In the mean time research this yourself. I think you will find the explanation is right in front of you. Good luck. Lisa
I actually had a NL document that my Chiari was not the cause of my headaches either. Really? They always say that. My daughter was told the same thing and suffered for years due to ignorant NL's!
"Complex Migranes" really? Ask him WHY. They never seem to have a logical answer for that. The truth here is this...
You have an identifiable cause on your MRI. Your true diagnosis has already been made clear. Stick to what you know to be true. Anything else is purely speculation and a distraction to the treatment you need. Dr 'a will take you on a medical merry go round if you let them.
See a NS who specializes or is at least very experienced with your condition. In the mean time research this yourself. I think you will find the explanation is right in front of you. Good luck. Lisa
My thing with trying medication is I almost ended up in the ER yesterday, and probably should have with what was going on. I definitely don't think I'm immune to anything, and certainly think migraines might be the cause, but it might be other things too. I just don't want to risk my life trying different medications when my body is rejecting them.
I'm thinking about seeing a gastrotologist to find out why my body is rejecting all the medication, and why food in general makes me sick. I definitely will look in Ehlers Danlos! I'm just so wary of trying anything again until I'm sure even the smallest dose won't send me to the hospital. (That place is expensive!)
I'm thinking about seeing a gastrotologist to find out why my body is rejecting all the medication, and why food in general makes me sick. I definitely will look in Ehlers Danlos! I'm just so wary of trying anything again until I'm sure even the smallest dose won't send me to the hospital. (That place is expensive!)
Just because someone has chiari doesn't mean that you are "immune" to migraines and other diseases. I read an article where the nero said it is more common to find chiaris with migraines than chiaris with headache caused by the chiari. Don't know if that is true but it can be worth thinking about.
Why not try some migraine meds and see if they help?
The important thing is to not try it forever and totally deny the possibility of the herniation actually causing the symptoms. All doors should be kept open I think.
Good testing and good docs is of coarse a good start.
Why not try some migraine meds and see if they help?
The important thing is to not try it forever and totally deny the possibility of the herniation actually causing the symptoms. All doors should be kept open I think.
Good testing and good docs is of coarse a good start.
COMMUNITY LEADER
Many of us with med issues tend to also have Ehlers-Danlos....do look into it and a Dr that can help from that aspect as it may be a way to help.....u also may need to take time off to adjust to a med....I know I was really out of it when I started the TOPAMAX and could not see it as a help...but it was, I listened to my Dr and tried it again and stuck with it thru the side effects I had, u may need to ask ur Dr and mayb u need to change the dosage or the med.
So I started topomax the day before yesterday, and yesterday at work my vision went really blurry, my heart was racing (I have a desk job, nothing strenuous) I had some pretty intense vertigo, was shaking super bad, slurred speech, and almost passed out. So... I'm not going to take it again. I'm still feeling quite out of it today. After every medication I've ever taken I've had really bad side effects to them. I'm usually puking all night, having these seizure like things, or like yesterday my body just starts shutting down. I'm actually afraid to take even ibuprofen now.
I'm at a loss at what to do. My condition is getting much worse. I feel like I have to put a halt on my life, and no one has answers. Ugh... I hate this.
I'm at a loss at what to do. My condition is getting much worse. I feel like I have to put a halt on my life, and no one has answers. Ugh... I hate this.
COMMUNITY LEADER
TOPAMAX has a 2 week adjustment period where u can feel worse for a time....more fatigued, foggy, and a different type of HA....that is all typical with this med and subsides generally in 2 weeks.... I hope this med helps u as it did me : )
Thanks SelmaS! I'll talk to my NL about getting all those tests done to double check. I started taking the migraine medication yesterday, and I can move my left side but I'm a lot more shaky. (I'm taking Topomax, which my NL said also helps with spinal fluid flow as well as migraines.)
I had a c-spine MRI and Cine MRI showing no CSF getting through. I had daily debilitating migraines. Just had decompression surgery and it relieved the migraines, Thank God! I'm so thankful. Getting staples out today!
COMMUNITY LEADER
Leads could be clips on ur fingers or a patch on ur chest....with wires attached.....
CSF backed up is not the only issue, but the way it pulsates with ur BP.....as the back up can happen at small intervals....
Many with Chiari have a syrinx (cyst) in the thoracic and /or lumbar spine, so if u did not have a MRI of those areas a syrinx is not completely ruled out.
The MRI was two parts, where I had it without the contrast and then with the contrast, I'm not sure by what you mean by leads.
They say I have no cerebral fluid backed up. I don't think they checked for pots, I haven't been checked for sleep apnea, and they did an MRI on my neck and skull and didn't find any cysts. I haven't been checked for EDS and tethered cord that I know of. They said I had no traces of MS too.
They say I have no cerebral fluid backed up. I don't think they checked for pots, I haven't been checked for sleep apnea, and they did an MRI on my neck and skull and didn't find any cysts. I haven't been checked for EDS and tethered cord that I know of. They said I had no traces of MS too.
COMMUNITY LEADER
A CINE MRI is not just with contrast it is done in 2 parts and leads are place to track ur BP.....did u have a 2 part MRI with the leads?
A reg brain MRI can be done with contrast too, so that does not mean it was a CINE.
Related conditions- ICP, POTS, sleep apnea, syringomyelia, ehlers-danlos,tethered cord,
non related- lymes, lupus, MS....
Get copies of ALL ur tests, as I found out yrs later I had tethered cord and I was told my MRI was clean and showed nothing to be concerned with....
So how do they diagnose the others? I have had a Cine MRI done, where they put the dye in right? What are the other related and non related conditions? All of my tests have come back clean.
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