Yes I started getting migraines when I was in my teens. Prior to all of my MS attacks I've also had a very severe migraine attack. Here in Germany there is a big focus on physio for neck and shoulders in people with migraines and this has helped so much as we discovered I was carrying a lot of tension and spasticity in this area which was triggering my migraines.
Receiving Botox in my trapezius, neck and head has also changed my life and then the backup when I am having a severe migraine attack is to visit my GP-based physio - they offer emergency appointments for people in the middle of a migraine attack and use hands-on therapy and shockwave to loosen the muscles which have all tightened in the head and neck. Think it's an interesting way of treating migraines and not something I'd heard of since moving here.
Since having MS (RRMS) diagnosed 2010) I started having migraines with aura. At some points I have suffered with aura on an almost daily basis and often not with pain but still quite debilitating. I have found through intolerance testing (York Test) and removing certain things from my diet such as gluten and yeast and refined sugar to be very helpful in reducing my symptoms because these foods cause inflammation in my body (probably due to leaky gut). I do think this is the potential elephant in the room with migraines and lots of chronic health issues, especially autoimmune; we are consuming things that make it a lot worse. What causes the leaky gut in the first place, I don’t know but for some reason western medicine won’t explore this – perhaps because there is no money to be made? This is not meant as a criticism of you Prog G - you are doing amazing things for the MS community.
I have headaches a lot. Some are quite bad to the point I cannot function. Most of the time i can take an Ibuprofen and that will suffice, but when they get really bad i have to take naproxen and if that doesn't work I resort to Excedrin. Much worse in the summer here due to the afternoon thunderstorms. Once the storms pass thru the headache begins to ease up but while the storm is approaching, OMG! its so bad! I also have 4 herniated discs in my neck and when the inflammation kicks in there i get those type of tension headaches.. i can put my hand on the back of my neck and feel the swelling on the right side. One of them is bad that it actually causes the bone to indent into the spinal cord. When that happens it causes an electric shock like feeling to shoot down from my neck all the way down to my elbow.. feels like someone is hitting me with a taser type device.. I have had steroid injections several times to combat the inflammation there and it lasts only a few months.. it's great while it lasts tho. Headaches are my companion nearly everyday tho.. to some degree but not migraines.. thank goodness..
I get ice pick headaches and tension headaches (the latter are worse following my period). Dx 2018, fingolimod since then. Luckily my tension headaches respond to ibuprofen almost all the time.
I suffered with horrendous migraines in my 20's, before my diagnosis in 2009. They have improved over the years, reducing significantly when I removed dairy from my diet. I seem to get more tension headaches now, nearly like my head is too heavy for my body and my neck strains to hold it up. Lots of stretching and massage thankfully sort it out most days!
Thank you Prof G this post is very helpful and informative. I suffer tension headaches/stress but not daily thankfully, just the day hasn't gone so well or exceptional noise around me! Interestingly, I also am extremely agitated by noise! Which then impact with a stress headache! I seem to be okay with general pain meds to get rid of them - but I can't seem to shift (ever) tinnitus! This affects me daily with a pounding sound (which I assume is my heart-beat, reassuring in some cases, that I'm still ticking :)) This can have a knock on effect & certainly add to your tolerance to noise & if I'm unable to distract myself, it can be difficult to contend with. Could the meds I'm on also help too - & if I wasn't taking them, could I suffer more with headaches too! Pregablin with all its faults, might be helping me.
I'm not sure if it's ms or menopause but I started having quite a few headaches about 8 years ago. However since starting oxygen therapy, they have vanished.
I am a 56-year-old woman with MS. (SPMS since 2020) I was first diagnosed in 2000 and started on Filgolimod around 2010. I seem to have outgrown my migraines. However I have severe pain in my head. For many years it was like sharp needles stabbing the temporal lobe. No doctor could find a cause.
Now it feels like bruised muscle. Having been a migraine sufferer, it’s just like the after effect of a migraine. It feels more like bruised muscle. And it passes / recedes after a few minutes . Could my brain be bruised? Recently, Acupuncture seems to offer relief.
The sharp needle like pain is called ice-pick headaches. These are very common in pwMS and migraineurs. They are benign, i.e. not associated with any underlying sinister pathology.
I’m going to talk to my Neuro in the New Year about migraine which increased to 2/3 week and lasting longer since I had Covid in July. Becoming very difficult to manage. I also have a vertigo/dizziness element with mine but no vomiting or aura. Feels like it’s become a chronic problem. Good idea about the diary!
Yes, I get migraines, but what led to my diagnosis back in 2005 were my ice pick head pains together with the after effects! The pains were debilitating, but only lasted 30 seconds followed by loss of control of my right side and the loss of my speech too, but 15 mins later I'd
be recovered until the next one! I was admitted to the QE in Birmingham. My MRI showed more lesions and I was treated with iv steroids and amitryptaline. I was in hospital for 2 week! Now a days I just get the head pains they can hang around fir just hours and upto 3 days so choose not to take any medication now due to the unpredictability of the attacks.
Yes I started getting migraines when I was in my teens. Prior to all of my MS attacks I've also had a very severe migraine attack. Here in Germany there is a big focus on physio for neck and shoulders in people with migraines and this has helped so much as we discovered I was carrying a lot of tension and spasticity in this area which was triggering my migraines.
Receiving Botox in my trapezius, neck and head has also changed my life and then the backup when I am having a severe migraine attack is to visit my GP-based physio - they offer emergency appointments for people in the middle of a migraine attack and use hands-on therapy and shockwave to loosen the muscles which have all tightened in the head and neck. Think it's an interesting way of treating migraines and not something I'd heard of since moving here.
Since having MS (RRMS) diagnosed 2010) I started having migraines with aura. At some points I have suffered with aura on an almost daily basis and often not with pain but still quite debilitating. I have found through intolerance testing (York Test) and removing certain things from my diet such as gluten and yeast and refined sugar to be very helpful in reducing my symptoms because these foods cause inflammation in my body (probably due to leaky gut). I do think this is the potential elephant in the room with migraines and lots of chronic health issues, especially autoimmune; we are consuming things that make it a lot worse. What causes the leaky gut in the first place, I don’t know but for some reason western medicine won’t explore this – perhaps because there is no money to be made? This is not meant as a criticism of you Prog G - you are doing amazing things for the MS community.
I have headaches a lot. Some are quite bad to the point I cannot function. Most of the time i can take an Ibuprofen and that will suffice, but when they get really bad i have to take naproxen and if that doesn't work I resort to Excedrin. Much worse in the summer here due to the afternoon thunderstorms. Once the storms pass thru the headache begins to ease up but while the storm is approaching, OMG! its so bad! I also have 4 herniated discs in my neck and when the inflammation kicks in there i get those type of tension headaches.. i can put my hand on the back of my neck and feel the swelling on the right side. One of them is bad that it actually causes the bone to indent into the spinal cord. When that happens it causes an electric shock like feeling to shoot down from my neck all the way down to my elbow.. feels like someone is hitting me with a taser type device.. I have had steroid injections several times to combat the inflammation there and it lasts only a few months.. it's great while it lasts tho. Headaches are my companion nearly everyday tho.. to some degree but not migraines.. thank goodness..
I get ice pick headaches and tension headaches (the latter are worse following my period). Dx 2018, fingolimod since then. Luckily my tension headaches respond to ibuprofen almost all the time.
What about new monoclonal antibodies active in the prophylaxis of migraine? Are they compatibile with MS and DMTs? Thank you.
Yes, I have a few patients on both.
I suffered with horrendous migraines in my 20's, before my diagnosis in 2009. They have improved over the years, reducing significantly when I removed dairy from my diet. I seem to get more tension headaches now, nearly like my head is too heavy for my body and my neck strains to hold it up. Lots of stretching and massage thankfully sort it out most days!
Thank you Prof G this post is very helpful and informative. I suffer tension headaches/stress but not daily thankfully, just the day hasn't gone so well or exceptional noise around me! Interestingly, I also am extremely agitated by noise! Which then impact with a stress headache! I seem to be okay with general pain meds to get rid of them - but I can't seem to shift (ever) tinnitus! This affects me daily with a pounding sound (which I assume is my heart-beat, reassuring in some cases, that I'm still ticking :)) This can have a knock on effect & certainly add to your tolerance to noise & if I'm unable to distract myself, it can be difficult to contend with. Could the meds I'm on also help too - & if I wasn't taking them, could I suffer more with headaches too! Pregablin with all its faults, might be helping me.
I'm not sure if it's ms or menopause but I started having quite a few headaches about 8 years ago. However since starting oxygen therapy, they have vanished.
Severe migraines seemed to stop around late 20s, but have had frequent left side headaches and visual disturbances on and off all my life - now 76.
A really interesting listen and great to hear how switching drugs can make such a difference! Thank you!
I am a 56-year-old woman with MS. (SPMS since 2020) I was first diagnosed in 2000 and started on Filgolimod around 2010. I seem to have outgrown my migraines. However I have severe pain in my head. For many years it was like sharp needles stabbing the temporal lobe. No doctor could find a cause.
Now it feels like bruised muscle. Having been a migraine sufferer, it’s just like the after effect of a migraine. It feels more like bruised muscle. And it passes / recedes after a few minutes . Could my brain be bruised? Recently, Acupuncture seems to offer relief.
The sharp needle like pain is called ice-pick headaches. These are very common in pwMS and migraineurs. They are benign, i.e. not associated with any underlying sinister pathology.
No migraine, but diffuse headaches/brain fog similar to a mild cold.
Usually get worse during the day and ameliorates in the evening.
*Somewhat* addressable by exercise and NSAID.
Presume that is a different thing?
Sounds like chronic daily headache.
I’m going to talk to my Neuro in the New Year about migraine which increased to 2/3 week and lasting longer since I had Covid in July. Becoming very difficult to manage. I also have a vertigo/dizziness element with mine but no vomiting or aura. Feels like it’s become a chronic problem. Good idea about the diary!
Is it possible that the migraines that PwMS get are triggered by the MS itself, and not by the usual dietary triggers etc?
The migraines don't go away, despite all efforts to avoid triggers.
Yes, I get migraines, but what led to my diagnosis back in 2005 were my ice pick head pains together with the after effects! The pains were debilitating, but only lasted 30 seconds followed by loss of control of my right side and the loss of my speech too, but 15 mins later I'd
be recovered until the next one! I was admitted to the QE in Birmingham. My MRI showed more lesions and I was treated with iv steroids and amitryptaline. I was in hospital for 2 week! Now a days I just get the head pains they can hang around fir just hours and upto 3 days so choose not to take any medication now due to the unpredictability of the attacks.