Every complex migtain I get is a bit different. I'm worried TIA ot Stroke can be involved. Numbness lasting longer,one with vision loss but no aur!a etc. So my concern has prompted my neurologist to have a neck and head angiogram. I'm 66 . Been getting them since age 44. My daughter started getting them at age 34. The stroke worry always looms on my mind.
1st thing the medical committee needs to do is educate Dr on how severe migraines can be I for one will NEVER goto a hospital emergency room again, you get treated like crap , intentionally.
I wish that the medical community would start focusing on bilateral choroid plexus cysts, especially larger ones, and the simple increased/decreased amounts of cerebral spinal fluid as the culprit in all of this. We're seeing this all of the time on MRI these days, clearly those with these anomalies are going to suffer when the barometric pressure changes, when they're dehydrated (wine dehydrates a body quickly), when they eat chocolate, which can cause inflammation around already too much CSF causing things to get squeezed and that causes pain (it's like a balloon that's either too full or underfilled except with pain either way). Mainline medicines that alter blood pressure\flow have shown to be ineffective, simply because the volume of CSF is dependent on daily, changing circumstances and it's a different system than BP, although higher BP can cause issues with off normal CSF levels, treating it by treating BP is like trying to get a car that's out of gas to start by adding oil to the engine, the oil helps, but the car still won't start without gasoline. Triptans clearly won't work 100% of the time because if a patient takes them when their CSF is too low already, the vasoconstrictive effect would obviously exacerbate pain (this is why they only work about 50% of the time and only in some). CGRP is a dangerous answer, because our bodies need to be able to regulate blood pressure, and going against that just isn't a good bet in those with chronic conditions because the BP generally rises when a person is in pain. And, increasing or decreasing serotonin flow is the cookie cutter approach for so many meds these days (seriously new pharma people, stop copying what somebody else did last time around and think outside the box). Think along the lines of hydrocephalus, however caused by the cysts being in the way and causing off normal CSF fluid level symptoms on a daily, varying basis. Treat the fluctuations in CSF, keeping it as consistent as possible, and treat the pain itself on days when the stimulus (barometric pressure increases, inflamed eyes from too much time on a computer, etc.) is uncontrollable. One day MDs will get this, but for now it seems that the lay people who suffer are leagues ahead of the medical community. I'm hopeful MDs will catch up soon!
Wow, very well articulated comment! I am going in for spinal surgery in under 3 months for compressive myelopathy and possible myelomalacia. I have also suffered from debilitating migraines since the age of 7 and was rationalizing with my wife that the damage and theorized imbalance of CSF could be what is causing the damage to my spine as well as the crippling migraines I get when the pressure changes or as you mentioned from food triggers (of which I avoid). I have my MRI scans, how can I tell where these cysts may be? Or should I be asking my neurologist to monitor my CSF specifically? Thank you for your validation of what I was trying to interpret on my own.
@@countdadcula4475 I'm sorry to hear that you are suffering with migraines too... It'd be a good idea to tell your neuro, but also tell the MRI tech to watch for and note the size of your bilateral choroid plexus cysts, making sure to note if they are "large" if they see that. They definitely should look for CSF problems as well. I would also look online for an MRI image of someone with "large bilateral choroid plexus cysts", so that you can compare your images to the sample that you find. Sleeping with my head in a 20%-30% elevated position sometimes lends some relief, the point is keeping drainage flowing downward, watch water retention too as I've read that diuretics can sometimes help a bit too. May God heal you and bless you perfectly Sean!
@@Splendid123456789 Thanks for the reply and kind thoughts. I think I will request another MRI since my last one is now over 6 months old and I will ask them to note any CSF anomalies and monitor for BCP cysts. You mentioned elevating my head during sleep which is interesting since I just ordered an adjustable bed last week to prepare for healing after the surgery. 95% of the time I wake up with my migraines, which could be the CSF not circulating or draining properly as you mentioned. Anyways, thanks again for your advice. Kindest regards, S
@@countdadcula4475 Thank you too! And, that's interesting because I also I wake up with them about 95% of the time, but the elevation seems to tone them down a bit. I hope your bed helps!
I have an on-going migraine. I’ve had one everyday and night 24/7. I get short periods of relief ( hours) and I am just physically and mentally drained from dealing with the pain. I’ve had MRI’s in the past. Your comment is the first one mentioning CSF. Mine are triggered by changes in barometric pressure and certain foods which I avoid. When I can no longer deal with the pain, I give myself an injection of D.H.E. 45. It used to be just one injection would break the migraine, but now I need two or three to get rid of the migraine. Is there any medications that can control fluctuations in CSF? I asked my neurologist several years ago to let me try taking medications they use for deep sea divers who get the bends or others for high altitude sickness. It didn’t work. I’ve been dealing with these since I was a kid. My dads side of the family carries the gene so I was hoping the anti-CGRP work. I am hesitant to try new medications until long-term side effects are known.
@@Labyrinthine_Complexities Do you feel flu like symptoms after being exposed to sun indirectly or directly? Do you get any rashes on your face that is raised? Do you get severely itchy palms that is madening?
How about for vestibular migraines? i’ve always understood that benzos are what helps with dizziness. My doctor believes aimovig will help my lightheadedness/dizziness. Ive been on it for 3 months now. i still feel dizzy. and neck pain is at it’s worse the first 2 weeks after dose. how long should i continue taking aimovig ?
Dr. Dodick...can you tell me how long it should take to get some reduction in headaches. I have taken 2 doses of the Amovig..Im at 45 days and have had a total of 14 migraine days...10 in Oct. and 4 so far- Nov....I am a borderline chronic...averaging 10-15 migraine days per mo. I keep a monthly log. I am so hoping to cut them in half so I can reduce taking a Triptan at onset of headache. I had no luck w/ Topiramate except for terrible sides..when I got Tinnitis in my ears..that was the final straw and I went off of it. ..thankfully after a couple of days getting off that drug the ringing stopped. I was really worried my ears were damaged.
Doctor I just started taking aimovig in December. Recently I have developed pretty severe lower back pain. However I didn't do anything different over the last few months there is absolutely no reason for me to have this back pain. So it then occurred to me that the only thing that I've done different is aimovig shots. So I went online to see if anybody else has been experiencing similar side effects and it turns out that there are a number of people that have experienced the same thing. Do you have any insight into this?
I had severe bone pain and severe itching with amovig. The med did help. I have chronic migraines for over 30 years. I wished the side effects were tolerable.
Sorry for my simple understanding. So is a migrain theorized to be a sustained pain signal in the trigeminal nerve? I like the lock and key description.
I get two types of migraines. Hemiplegic Migraine w/Aura and also Ice Pick Headaches aka Trigeminal Autonomous Cephalgia. They occur in different regions for me. The Aura Migraine is more visually disturbing with ocular and preorbital pain, but I also build up pressure behind my right eye which presses down on my Optic Nerve, slowly building up Cerebral Spinal Fluid. Cheers to it hopefully working for us both. Started Ajovy today.
@@NanaSevers I'm doing really well on Aimovig and had success with Ajovy as well. The only thing with Ajovy is that it triggers my autoimmune system disorder to attack my skin in shingle like outbreaks.
Since Aimovig has been on the market for a while, it seems to be getting some rather bad reviews especially since some of the horrible side effects seem to persist even when the medication has been discontinued. I remember when Imitrex came on the market and was praised as a wonder drug in the beginning. Now so many people are claiming that they had very little luck with that medication which is probably why the pharmaceutical corporations keep pushing out new medications that don’t seem to be very effective.
Thank you for an amazing explanation! I am taking my first Aimovig today.
Did The Aimovig shot work
Cum te simți după injecția cu Aimovig ?
Every complex migtain I get is a bit different. I'm worried TIA ot Stroke can be involved. Numbness lasting longer,one with vision loss but no aur!a etc. So my concern has prompted my neurologist to have a neck and head angiogram. I'm 66 . Been getting them since age 44. My daughter started getting them at age 34. The stroke worry always looms on my mind.
1st thing the medical committee needs to do is educate Dr on how severe migraines can be
I for one will NEVER goto a hospital emergency room again, you get treated like crap , intentionally.
On keto diet my migraine rate dropped off the charts. 2 in a year.. hard lifestyle though.
I wish that the medical community would start focusing on bilateral choroid plexus cysts, especially larger ones, and the simple increased/decreased amounts of cerebral spinal fluid as the culprit in all of this. We're seeing this all of the time on MRI these days, clearly those with these anomalies are going to suffer when the barometric pressure changes, when they're dehydrated (wine dehydrates a body quickly), when they eat chocolate, which can cause inflammation around already too much CSF causing things to get squeezed and that causes pain (it's like a balloon that's either too full or underfilled except with pain either way). Mainline medicines that alter blood pressure\flow have shown to be ineffective, simply because the volume of CSF is dependent on daily, changing circumstances and it's a different system than BP, although higher BP can cause issues with off normal CSF levels, treating it by treating BP is like trying to get a car that's out of gas to start by adding oil to the engine, the oil helps, but the car still won't start without gasoline. Triptans clearly won't work 100% of the time because if a patient takes them when their CSF is too low already, the vasoconstrictive effect would obviously exacerbate pain (this is why they only work about 50% of the time and only in some). CGRP is a dangerous answer, because our bodies need to be able to regulate blood pressure, and going against that just isn't a good bet in those with chronic conditions because the BP generally rises when a person is in pain. And, increasing or decreasing serotonin flow is the cookie cutter approach for so many meds these days (seriously new pharma people, stop copying what somebody else did last time around and think outside the box). Think along the lines of hydrocephalus, however caused by the cysts being in the way and causing off normal CSF fluid level symptoms on a daily, varying basis. Treat the fluctuations in CSF, keeping it as consistent as possible, and treat the pain itself on days when the stimulus (barometric pressure increases, inflamed eyes from too much time on a computer, etc.) is uncontrollable. One day MDs will get this, but for now it seems that the lay people who suffer are leagues ahead of the medical community. I'm hopeful MDs will catch up soon!
Wow, very well articulated comment! I am going in for spinal surgery in under 3 months for compressive myelopathy and possible myelomalacia. I have also suffered from debilitating migraines since the age of 7 and was rationalizing with my wife that the damage and theorized imbalance of CSF could be what is causing the damage to my spine as well as the crippling migraines I get when the pressure changes or as you mentioned from food triggers (of which I avoid). I have my MRI scans, how can I tell where these cysts may be? Or should I be asking my neurologist to monitor my CSF specifically? Thank you for your validation of what I was trying to interpret on my own.
@@countdadcula4475 I'm sorry to hear that you are suffering with migraines too... It'd be a good idea to tell your neuro, but also tell the MRI tech to watch for and note the size of your bilateral choroid plexus cysts, making sure to note if they are "large" if they see that. They definitely should look for CSF problems as well. I would also look online for an MRI image of someone with "large bilateral choroid plexus cysts", so that you can compare your images to the sample that you find. Sleeping with my head in a 20%-30% elevated position sometimes lends some relief, the point is keeping drainage flowing downward, watch water retention too as I've read that diuretics can sometimes help a bit too. May God heal you and bless you perfectly Sean!
@@Splendid123456789 Thanks for the reply and kind thoughts. I think I will request another MRI since my last one is now over 6 months old and I will ask them to note any CSF anomalies and monitor for BCP cysts. You mentioned elevating my head during sleep which is interesting since I just ordered an adjustable bed last week to prepare for healing after the surgery. 95% of the time I wake up with my migraines, which could be the CSF not circulating or draining properly as you mentioned. Anyways, thanks again for your advice. Kindest regards, S
@@countdadcula4475 Thank you too! And, that's interesting because I also I wake up with them about 95% of the time, but the elevation seems to tone them down a bit. I hope your bed helps!
I have an on-going migraine. I’ve had one everyday and night 24/7. I get short periods of relief ( hours) and I am just physically and mentally drained from dealing with the pain. I’ve had MRI’s in the past. Your comment is the first one mentioning CSF. Mine are triggered by changes in barometric pressure and certain foods which I avoid. When I can no longer deal with the pain, I give myself an injection of D.H.E. 45. It used to be just one injection would break the migraine, but now I need two or three to get rid of the migraine.
Is there any medications that can control fluctuations in CSF? I asked my neurologist several years ago to let me try taking medications they use for deep sea divers who get the bends or others for high altitude sickness. It didn’t work. I’ve been dealing with these since I was a kid. My dads side of the family carries the gene so I was hoping the anti-CGRP work. I am hesitant to try new medications until long-term side effects are known.
Excellent explanations of these 2 new treatments. Thank you.
Thanks for this. Any update on the efficacy of Engality as associated to Chronic cluster migraines?
Many patients with migraine have chronic PTSD.
Did any of the patients that were in the trials have systemic lupus? If so did it work well?
I haven't tested positive for Lupus, but I do break out in skin eruptions really bad about a week sometimes after I take my injections.
@@Labyrinthine_Complexities Do you feel flu like symptoms after being exposed to sun indirectly or directly? Do you get any rashes on your face that is raised? Do you get severely itchy palms that is madening?
By any chance, would there be possibility of Fremanezumab also working "off-label" for chronic pain disorders? Because that would be amazing.
How about for vestibular migraines? i’ve always understood that benzos are what helps with dizziness. My doctor believes aimovig will help my lightheadedness/dizziness. Ive been on it for 3 months now. i still feel dizzy. and neck pain is at it’s worse the first 2 weeks after dose. how long should i continue taking aimovig ?
Janelepauw My upper arms are swollen and I am bruising easily. I am in my 4th month of Ajovy...thoughts?
Dr. Dodick...can you tell me how long it should take to get some reduction in headaches. I have taken 2 doses of the Amovig..Im at 45 days and have had a total of 14 migraine days...10 in Oct. and 4 so far- Nov....I am a borderline chronic...averaging 10-15 migraine days per mo. I keep a monthly log. I am so hoping to cut them in half so I can reduce taking a Triptan at onset of headache. I had no luck w/ Topiramate except for terrible sides..when I got Tinnitis in my ears..that was the final straw and I went off of it. ..thankfully after a couple of days getting off that drug the ringing stopped. I was really worried my ears were damaged.
Doctor I just started taking aimovig in December. Recently I have developed pretty severe lower back pain. However I didn't do anything different over the last few months there is absolutely no reason for me to have this back pain. So it then occurred to me that the only thing that I've done different is aimovig shots. So I went online to see if anybody else has been experiencing similar side effects and it turns out that there are a number of people that have experienced the same thing. Do you have any insight into this?
I had severe bone pain and severe itching with amovig. The med did help. I have chronic migraines for over 30 years. I wished the side effects were tolerable.
Sorry to hear. Just a guess but maybe somehow less fluid available to your disks. Check out Sara Key back block excercise to hydrate your disks.
Can you give the link for part 2 the q and a discussion as I'm not finding it.
Sorry for my simple understanding. So is a migrain theorized to be a sustained pain signal in the trigeminal nerve? I like the lock and key description.
I get two types of migraines. Hemiplegic Migraine w/Aura and also Ice Pick Headaches aka Trigeminal Autonomous Cephalgia. They occur in different regions for me. The Aura Migraine is more visually disturbing with ocular and preorbital pain, but I also build up pressure behind my right eye which presses down on my Optic Nerve, slowly building up Cerebral Spinal Fluid. Cheers to it hopefully working for us both. Started Ajovy today.
@@Labyrinthine_Complexities I do have this also. I am hesitant to try new drugs on the market. Unknown long term side effects.
@@NanaSevers I'm doing really well on Aimovig and had success with Ajovy as well. The only thing with Ajovy is that it triggers my autoimmune system disorder to attack my skin in shingle like outbreaks.
Since Aimovig has been on the market for a while, it seems to be getting some rather bad reviews especially since some of the horrible side effects seem to persist even when the medication has been discontinued. I remember when Imitrex came on the market and was praised as a wonder drug in the beginning. Now so many people are claiming that they had very little luck with that medication which is probably why the pharmaceutical corporations keep pushing out new medications that don’t seem to be very effective.
Hmmm, I respond well to 2 Imitrex together.
Happy to be able to hear Dr Dodick ...so migraine is not vascular related at all?
Are triptans safe or unsafe for migraine with aura?