This is my first post and I am very excited to find a supportive network out there for Chiari!
I have just been diagnosed with Chiari I only two days ago. Ever since the age of 12 i have been plagued by aura migraines. To my disappointment my GP has stated the my newly diagnosed Chiari has absolutely nothing to do with my aura migraines. The only thing that has been able to keep my migraines to a minimum has been osteopathy focussing on the upper neck area. This has helped me so much with the migraines and the pain! However, I have been told to give up my osteopathy until i see my neurologist. As i am new to Chiari, does anyone else get aura migraines that they think are associated with their Chiari and is osteopathy a negative thing for my Chiari? Any advice/stories would be greatly appreciated!
I have had several aura migraines in the past… I always get really bad tunnel vision swiftly followed by the nausea and headache.
My headaches I can confidently say was hormone related. As I only suffered with these type of migraines whilst on the contraceptive pill and when I was pregnant.
I still have lots of headaches… but no more aura migraines since the birth of my daughter (and dont use hormone related contraceptives anymore)
Ill just point out… my it was my GP who advised this possible cause. Because as soon as I told her about my first Aura migraine. … she told me to stop the pill straight away (the type where you have a weeks gap every month) and she told me to start the mini pill where you take it continuously. . Except I got really bad acne with this and stopped all together lol
I have several types of Migraines and yes they are associated and symptoms of CM. I Love my Osteopath and always will. They are excellent physicians. You can still see you Osteopath for routine health care or concerns, pain mgmt....basically anything but manual medical interventions...aka spine adjustments. An Osteopath is superior to Chiropractors when it comes to spine care and treatment and therapies, but both can unintentionally harm someone with CM. I have even read about fatalities in extreme situations. My Osteopath hasn't adjusted my spine since 9/2005...no matter how much I beg. I have even tried to tell him to skip the C Spine, but you can't for a good alignment. He just smiles and commiserates with me.Osteopaths are great diagnosticians and pain mgmt dr's. There are even Osteopathic Hospitals.
My daughter and I both have CM1 and we both have auras. I whole heartedly believe they are related. Some websites directly state visual disturbance as a symptom. If you are loosing peripheral or color vision that must be addressed, as permanent vision loss can (rarely) occur. But as all us Chiarians already know, rarely doesn’t really apply to us. We are the rare cases already.
I have cm1 AND migraines with aura. Have had the chiari and aura migraines since birth diagnosed around early childhood…I go through cycles with the migraines, some are 100% hormonal and occur just before or after my period. But some are obviously not (or not so obviously not…) anyway, I can and do have migraines anytime of day or night, anytime of the week or month or year. Longest one lasted almost 2 weeks when I was around 6 years old. Consequently when I was dx with chiari but told it had absolutely nothing to do with headaches… How crazy are these dr’s sometimes? I mean really, we know that everything is connected and that the brain and spine connect everything as a sort of central hub… Stands to reason that if there is any problem in the brain there “could” be headaches involves. But I digress. I’ve never used an osteopath so I can’t help you there but I absolutely can say that I have had both aura migraines and CM1 all my life. I’m guessing there IS a connection… My 2p
I also have had horrible migraines my whole life. I went off the pill, but still migraines. I whole heartedly believe they are chiari related. Please make sure your NS has plenty of experience with Chiari. Almost everyone here will tell you that doctors & even some NS's will dismiss a lot of issues with chiari. The right NS with chiari knowledge knows that almost any symptoms are possibly chiari related. It takes time & perseverence to find the right NS, trust me, I am still looking, but refuse to settle!! All my doctors so far do agree though that the migraines are certainly Chiari related!
Our daughter has been doagnosed with hemiplegic migraine by her neurologist...running one into another so never has a day with no pain. Breakthrough last week though, when we got to see a team in the Brain injury unit in Dublin and they have agreed to give her residential treatment over several weeks so that she can regain power lost after a static shock injury which led us to Chiari surgery in the first place....long journey though. Aoife was perect before her accident, butwas in so much pain afterwards, that resulted in an MRI scan 7 months later which showed up the chiari. She had surgery a year after the accident, but apart from alleviating severe musle spasms and freeing up movement in her neck the lack of power and constant pain remained. She has been hospitalised on numerours occasions with nobody quite knowing what to do....sometimes leaving her so upset, as she felt that she was not believed. I would agree absolutely that your migranes are directly connected with the Chiari. Have a look at http://www.chiari.org.uk/page16.htm. keep focussed on your symptoms, keep a diary and insist on your doctor reading it! Above all, you know your body best and go with your gut feeling.
I never had a migraine before 6 months ago. And it was a aura migraine. I lost part of my vision for about a 1/2 hr, and then had the migraine. I had to go to the e.r. After doing a brain MRI they found the Chiari. So, I don’t know. I’m sure that I’ve probably had Chiari my whole life, but my symptoms really came on hard after that migraine! Which comes first, the chicken or the egg?
I had migraines for years, the way that I knew one was coming was that I would see a band of kaleidoscope looking lights in my field of vision, I learned that if as soon as I started seeing them I ate a couple of little tootsie rolls and some black coffee, it would stop it At that point I had never heard of Chiari much less thought I had it. However, I had decompression surgery almost 9 years ago, and have maybe had 1 migraine since. Different things work for different people, your doctor usually gauges his answers on what he has experienced, that doesn't mean that he is wrong but it doesn't mean that you are right either. Since your migraines are helped by osteopathy focusing on that are I would think that there might be a possibility that your CM is effecting things, it is very possible. I guess what I am saying is that everyone is different and unless your GP specializes in CM, he should at least consider that possibility
I respectfully disagree to say that it doesnt make the doctor wrong. It is nonsense to say migraines dont have anything to do with chiari. What proof is he basing that on? Yes, maybe people get migraines who do not have chiari, & yes, maybe she would have migraines incidentally without chiari, but it is clear that chiari can cause a tremendous amount of symptoms, & migraines is one of the common ones. I do agree that you need to find someone who specializes in chiari for that exact reason! I think we have all hit road blocks with many doctors untill e find one. good luck!
Jessica, what I was saying, I guess, is that not all migraines are caused by Chiari, and if the doctor is not familiar with Chiari then they would base their answer on what they know. Unfortunately, there are doctors out there, that even though someone tells them that they have CM, they really don't want to research it. I had a few doctors who did not want to put the effort in to researching the problems that I had, a lot of people have had doctors that thought they were hypochondriacs, and just wanted the attention or the drugs. Those of us with Chiari, seem to have to do a lot of research on our own, and at times, we have to educate the doctors on our condition. Let me say this, a lot of doctors tend to get offended when it seems that the patient knows more about the condition than they do. The most important thing is to find a doctor that is either familiar with Chiari or that will at least listen, and take the effort to learn more about it. Luckily for us, we have this web site and more web sites popping up that offer support , and people out there that are in the same boat that we are, that will share information, not only on the condition but on doctors in our areas that do know about Chiari Keep digging until you find one and good luck!
Thnk you so much for all of the advice! Great discussion going! I am a firm believer in both sides of the coin and appreciate all of the answers (both good and bad). As i have not seen my neurologist yet, I cannot determine if he is a good or a bad one. I am very intuned with my body (ie spent 27 yrs running around to different medical ppl stating "Somethings not right! I don't FEEL right"). As much as some people are stating that my aura migraines are unrelated, i still whole heartedly believe that they are. Im still quite new to all the in's and out's of Chiari, and am very excited to hear all of the opinions presented on this pg! I'm so very glad to hear ppl saying not to give up my osteopathy! That makes me so so HAPPY!!! think i'll have to give up the roller derby dream though :( From a very newly diagnosed Chiari 1 girl, THANK YOU! and i;m sure more posts to come :)
Migraines are a huge part of Chiari and each person is a tad different. I wish you luck and can feel you I have the same issues and try to hide all my symptoms from everyone and feel bad that I not the best employee one day in more days out
I have a CM1 and what they call mixed headache disorder, meaning many different types of headaches, some not having to do with my Chiari. I have had them since I was 11, I am now 36. I just had my PFD 6 weeks ago and my NS specifically told me I will still have migraines and that I still need to be aware of my triggers. So you might need to take time to get to know your migraine triggers. Mine include, heat, sun, nitrates, red wine, caffeine plus a bunch more. My NS said that migraines can come from so many different areas of the brain and head that the PFD is not always a fix for those of us Chiarians with migraines.
Slarg, yes, I soo relate to what you said! I even had 1 NS from the chiari center that got annoyed when I told him I joined this group, & when I asked him what all this"herniation" was that I hear about from here he said "stop listening to people online, you dont have it" then proceeded to show me how much my brain grew under my skull!! & this was a "chiari specialist" ! I love this group, but sometimes I get angry about how I would have no info if not for my own research!
If we are splitting hairs, then migraines are a separate issue only in the respect that migraines are identified as having no cause.If you are suffering the same symptoms and have chiari the doctors will now not classify the condition as migraine due to there being a cause.There is no proof, & everyone is entitled to their opinion, but I firmly believe that chiari causes or contributes to migraines(migraine symptoms i should say). Most NS's experienced in chiari will tell you that chiari causes such a range of symptoms.I will quote one NS who said to me "when there is pressure on the brain & spinal chord, almost any symptom is possible". Migraines symptoms are common & obvious issue with chiari, hello, direct pressure on the brain. medically it may not be known as migraine due to the known cause, but thepain & treatments are one & the same. a name, a name, whats in a name. You say the doctor is right, I say they are robots unable to think outside the box or see the elephant in the room. If you have migraine like pain then you need migraine medicine. period. Dont suffer for symantics!! - wish you well
JeanneS said:
Your doctor is correct. Migraines are a separate issue. I have both. Fortunately, going through menopause has so far gotten rid of the migraines.