What is the difference between a Chiari headache vs a migraine?
I am having a hard time convincing my neurologist that I do not have migraines, I only have pressure in my head, 24/7 with a dull ache in the back of my head which continues up to behind my eyes, most of the time and only get a true headache when I lift too much, bend over, etc, but those headaches are very short lived.
I am trying to find a Dr. they are all pushing me aside and saying that either it's not Chiari causing my debilitating symptoms or the Chiari is not big enough to cause those problems, i.e. numbness in my feet, tingling in my head, arms, & legs and weakness in my hands, neck pain, memory loss with cognitive issues, sensory loss, & degraded motor skills in my hands, fatigue, and many more. I thought I had found a Dr. because when I called his office the staff said yes he is familiar with and has worked with Chiari, but when I went for what was supposed to be a new patient visit that his office staff said would be at least an hour, it turned out that he was only in the room with me for 15, maybe 20min, did a handful of neuro tests & from what he said, I gathered that he simply read a letter from the neurosurgeon that I went to, which suggested that I had a 50/50 chance of being improved with surgery and did not recommend surgery at this point, but NS suggested that I see a migraine specialest, and I think he went with that dianosis and tried to prescribe me with one of three migraine/seizure meds. Then he walked me out and said to the seceratarty that if I wanted another appointment, I would call. I was in shock, and flustered and it didn't really sink in as to what just happened til after I left, but I was ticked, especially since this was supposed to be a new patient visit.
Same thing happened to me... I took the migrane medicine my neurologist gave me, it didn't work at ALL, so she started actually treating me like a Chiari patient. I have a neurosurgeon that 100% believes my Chiari is the source of my pain, which is good to hear, but you're right; it can be very disheartening to feel like you're going back in progress. My advice would be to see another doctor maybe. I had to go to a few different ones before finding one that even knew what Chiari was, haha. But I'm still learning too! Best of luck to you, sweetheart.
I was once told by a neurologist that I never needed surgery even though I was 2 yrs post-op. He also told me that chiari is very common and doesn't cause symptoms. I left as soon as I could and found a new neurologist who understood. I hate that it is way for Chiari patients but unfortunately it is something we get the pleasure of enduring. Definitely keep looking for a new doc! Best wishes!
Sounds like the appointment that I had with my NL last month. He kept telling me I have "atypical migraines", and wonder why all the traditional migraine medicine doesn't work on me. I get headaches in the back of my head, and a lot of times only one eye feels like it's being pressed on. Plus I get the tingling in my arms, weakness in my arm, but both of those I can deal with.
I know my body didn't get that memo either, lol if you figure out where the memo is, please let me know so I can show it to my body.
Becki Bowling said:
That's funny... Chiari doesn't cause symptoms. Can somebody please tell my body that? I don't think it got the memo.
Wow i cant believe your appointments sound like mine i hear echoing! So do the nuero doctors make you feel like your crazy? Mine sure have. I believe my next stop is the mayo clinic!im sick of hearing its a migraine! I could argue until im blue in the face yes i admit im a migraine suffer but this is no migraine! Pain and pressure in my head!
I know how you feel. Our symptom sound very similar...So far two neurologists have told me that chiari doesn't have symptoms! I don't even get offered migraine meds! I keep getting told either it's chronic fatigue/fibromyalgia or that I need tested for lupus (again!). So frustrating!!! It's pretty disheartening.
My daughter saw both a neurosurgeon and a neurologist who both said her symptoms are not from the Chiari. The neurologist she is seeing now says they are migraines so he put her on meds which is helping alot. But she still has the nause, breathing difficutlies, neck pain, weakness in her legs. Her neurologist said she would outgrow the neck pain. Makes no sense to me!
Suzie Hood said:
Same thing happened to me... I took the migrane medicine my neurologist gave me, it didn't work at ALL, so she started actually treating me like a Chiari patient. I have a neurosurgeon that 100% believes my Chiari is the source of my pain, which is good to hear, but you're right; it can be very disheartening to feel like you're going back in progress. My advice would be to see another doctor maybe. I had to go to a few different ones before finding one that even knew what Chiari was, haha. But I'm still learning too! Best of luck to you, sweetheart.
You asked the difference between migraines and chiari headaches. I can only answer from my own experience but the two are very different for me.
When I have a migraine I can predict them coming. I start first with a stange sensation that feels like it is coming from the inside of my skull. The tips of my fingers become numb. I get an aura in the form of a small dot (think about the dots you get from a camera flash) in the field of vision in one eye that has flashing lights like a strobe in it. The aura becomes larger and larger and spreads to the other eye until I can no longer see. The pain is unbearable. I can't handle any light, sound, or smell. I vomit which makes the pain evern more severe. The only thing I can do is crawl into bed in a dark room and sleep it off. My migraines usually only last one day.
The chiari headache is always with me to one degree or another. Some days it is just "annoying" (funny how we can get so used to pain) other days it is almost unbearable. I have pain in the back of my head, down my neck, and across my left shoulder. It feels like someone is inside my skull trying to push their way out. My eyes feel like they could pop right out of my head. My ears even feel full, if that makes sense. Bending over or sometimes even looking down makes the pain worse. Moving my head quickly etc. sends a pounding through my head. I don't consider my other symptoms part of the headache even though they are part of the chiari/syrinx.
For me to two are very different. I can still function on most days with a chiari headache. I cannot function at all with a migraine.
It took so long to get into the NL when I started having symptoms that my PCP ordered my first MRI himself. This is how we found the chiari and the syrinx in my cervical spine that runs down to c-5. He immediately made me an appointment with a NS but said I should keep the NL appointment to make sure we didn't miss anything else although he believed the chiari was the cause. The NL was horrible. All he wanted to focus on were my migraines (which I hadn't had in the month it took to get the appointment. If it wasn't for my PCP I would have never been sent to the NS. The NL said that chiari was always just incidental and it or the syrinx would not cause any symptoms. He even said that he couldn't understand why I was being sent to the NS because there was no reason for me to go that chiari was only treated if you pass out when you cough. He also told me that I was working myself up because I read what chiari was and it scared me so I was amplifying my sypmtoms. He then prescribed a beta blocker, and anti-depressive, and migraine rescue meds and then ordered another CT scan. Needless to say I didn't fill the scripts and didn't go for his scan. I found Dr. education material that I will be forwarding on to his office along with a detailed letter explaining to him how education in chiari would benefit his future patients. I'm sure he will still think it is all in my head....lol
I would def. get another opinion. I would just take the MRI films with me and not mention that you have been seen for this before. ultimately it is your decision if you want surgery. I would just start bawling and say you can't take it anymore. this is your life and you are wiling to take your chances even if you only have a 50% chance. I was also told I only had a 50/50 chance of improvement. I have had a million percent improvement. Ok maybe not that much, but I feel so much better. I had to beg for him to do the surgery and once he was done he said he was glad he didn't blow me off. Good Luck and I will pray that you find the dr you need to help you!
I have since been to see Dr. Tew in OH and he comfirms that is it Chiari causing the symptoms and not migraines
I know what you mean, I describe my Chiari headache/pressure as if someone has two balloons, one inside the other and you are trying to blow up the inside balloon with out stretching or blowing the outside one.
Goatlady said:
It feels like someone is inside my skull trying to push their way out.
For me to two are very different. I can still function on most days with a chiari headache. I cannot function at all with a migraine.
That is kinda of what I thougt on the difference between the two, but never having a migraine, I do not know what they feel like. Closest I have come to what I have heard people describe as a true migraine would be the concussion I got playing soccer years ago when I went up for a head ball and cracked heads with the other team, got a good goose egg on my head and actually knocked the girl out.