Survey Results: headache in MSers

Why are you not having your headaches treated? #MSBlog #MSResearch

“This headache survey was done as part of a clinic speak post I did on headaches in August. The results show that headaches are a big problem for MSers; only 19% of the survey respondents don’t get headache. I assume this survey has ascertainment bias as this figure is lower than more systematic studies. By ascertainment bias I mean that MSers who suffer headaches are more likely to have completed this survey. As expected the majority of headaches have been diagnosed as migraine. What astounds me is that almost half of you don’t receive treatment for your headaches. Why? Please read some of  the comments left on the survey; it is clear for some of you headaches are very disabling and are impacting on your quality of life. If you have headaches and they are a problem start a headache diary and discuss them with your neurologist when you next see him or her.”

Some comments from the survey

  1. Diagnosed with chronic migraine in 2011. At the time, the pain was severe and disabled me for over a year. i had migraine without aura almost every day of the month until participating in a migraine study using greater occipital nerve block. Headache diary 1 month prior to injection and immitrex to get the headaches under 15 days per month so I could meet the study criteria (it did work). After the block, I had migraine without aura on average 3 times in a month, gradually improving to the point of having weeks with no Migraine at all. I consider the Migraines to be under control now, however I did start having aura – no headache, just an aura which would come on suddenly, last for 45 minutes and would usually be in only one eye. I experience these auras without headache approximately once every few months.
  2. I do have a congenital condition which is a malformation of the Circle of Willis- Agenesis of the Right Posterior Communicating Artery on top of the MS.
  3. Interesting post. 
  4. I have had headaches all my life until MS. Now I don’t have normal headaches. These are pains at specific regions on parts of the head. Not necessarily the same spot each time. Feels like someone has hit me on that specific spot with an ashtray.
  5. May get it on rare occasions where fatigue, too little sleep, stress and/or hot weather with high humidity occur at the same time, 1-2 times a year. Don’t consider it a real problem for me.
  6. Have been experiencing severe headache of a ‘different’ type – location and sensation – to the migraines I get, during recent MS exacerbations.
  7. I dont have any brain lesions or other brain damage (Brain is normal) – only optic and spinal lesions. – They dont think I have NMO though.
  8. Not much use I am afraid, as I rarely get head headache.
  9. I have had one spell of headache, about 2 years ago. It was a continuous pain for around 5 days. I went to the doctor but by the time I got the appointment, it was on the wane. She wrote it down as ‘unexplained’. 
  10. I’d say that headache was one of my earliest symptoms, since my mri was clean, it was assumed that i was having numbness from migraines. personally, i think the headaches i get are more likely related to optic neuritis than anything else. generally, 5pmg of ultram about once a week is enough for me to get by on. 
  11. I find that ibuprofen type meds are effective.
  12. Last week my head was fragile and I suspect this was caused by taking amantadine for intention tremor and fatigue. I no longer take amantadine and head is OK at present.
  13. My headches don’t last long… An hour or so. They are extremely painful, like knives, but they don’t interfere with what I’m doing. They started about 5 years ago. They are often in multiple locations at the same time. 
  14. I think they are connected with heat. Had them quite badly in July and could not think of any specific reason. Paracetamol would not shift them. Now that it is cooler they are not occurring. Did not have them before the summer.I have not mentioned them to any doctor or neurologist.
  15. Lyrica, gabapentin,cymbalta combination being used for pain. Botox for spacisity injected in neck and legs, but also injected in forehead for headaches.
  16. I had more headaches in the past before I was diagnosed with MS. Since then the headaches have become less in quantity and severity.
  17. By less I mean about 1 attack approx. every 4-5 months while in the past every 1-2 month. And by severity: if the past headaches were 100% they now are 25-40%.
  18. I can’t remember the lats time I had a headache. In the past I have experienced the ‘aura’ and took paracetomol immediately, it only once developed into a headaceh – the first time, before I knew what action to take. These incidents were related to my monthly cycle, I believe, happened in my late 30s – early 40s. Now in my 50s I haven’t experienced this for well over 10 years.
  19. Not sure if this helps you, but trying to give you a full picture of what people experience.
  20. I take co-codamol for back / leg pain which I find also helps my headaches.
  21. Before the diagnosis MS I suffered the most severe headaches.
  22. Don’t really work, a migraine is preferable to an ‘MS headache’ as that only lasts 1 or 2 days but an MS head can last days.
  23. Ive been saying for more than a year that I do have a diary of big headaches that mean I am totally incapacitated with the pain… And I have said as I am now 47, could it be hormonal link? Indeed this is a major issue I have for my next Neurologist appointment which I’ve had brought forward because of quality of life for my husband and I. 
  24. I feel my neck and shoulder muscles tighten up and I can’t stop them like they go into spasm then I get a headache for several days and I feel it in my eye socket. 
  25. I had my first aura migraine at the age of 7. I was diagnosed with MS aged 20.
  26. I have never asked for medication for my headaches.
  27. My migraine changed character when closer diagnosis: I had migraine-attacks before diagnosis – they were very seldom and mostly with aura. But closer to diagnosis I experienced two short attacks with speech-problems and one with temporary numbness on my cheek. All three attacks lasted only 5 minutes or so. All attacks came when drinking coffee, two of them I was taking estrogen pills in addition. Nowadays I experience just “normal” headache (?) and then only on the right side of my forehead. It might be on the same spot as one of my last lesions. 
  28. My strange migraine-attacks might sound like very, very short MS-relapses. Maybe the were? My relapses have been many and light. I have read that migraine attacks can also involve both speech- and skin-feeling disturbances. 
  29. The aura is very disturbing. Can last up to an hour. The headache pain is not always intense but the unsettled sickly feeling and foggy head can last the rest of the day. Regular Ibuprofen seems to help.
  30. Never get headaches, though I do have them now I have started on Avonex!! last for 5 days post injection (Rx paracetamol). 
  31. I had MS symptoms at 25 yrs, diagnosed 35 yrs. Now 70 yrs, no major attacks for years. Left with mild physical symptoms, memory, balance problems. Occasional migraine 18-50 yrs, then increased to 20/month. Preventive drugs ineffective until methysergide 3 yrs ago. Halved no to 10/month. Methysergide unavailable so paid for first Botox at ???. Fighting for NHS to pay second Botox at ??? hosp. I wonder if there is a link between MS & migraine. I think eyestrain is a factor in my migraine, & MS has affected my eyesight. 
  32. My headaches are more down side of face, in neck, back of throat and sometimes into back too.
  33. Was on propranolol but had to come off it now that I’m taking Gilenya.
  34. I watch for patterns in the magnetosphere and have found a correlation between anomalies in that and the timing of my headaches. I have found that trips to the ER for headache often results in hearing that they had headache cases all day. I am not the only one.
  35. I don’t figure link between headaches, MS i cycles, because I never had headaches during the cycle before my first relapse, year and a half before. Since then, almost every cycle is with very severe headache, 3 day long and no medicine helped me. I am 46. 
  36. have tried 2 rounds of botox but didn’t help. was also rear-ended 18 months ago–neck injury significantly contributes to headaches, and recently found a massage therapist who helps my headaches.
  37. Humidity is the one variable that I can’t control! Late nights, wine etc are theoretically controllable. 
  38. The head ache is not like any other head ache I have had. It can last three days at a time. Sleep doesn’t help and is sometimes disturbed due to the level of pain. It is a very strange pain, it seems like my brain is burning or squashed. 
  39. My interferon beta 1 A injections cause violent headaches if I am overtired on injection day.
  40. I only ever had a headache when I relapsed with sixth and seventh nerve palsy. It was dull and painful and lasted about 3 weeks.
  41. I have Tysabri every 4 weeks and usually suffer a migraine the day after infusion.
  42. Also if stressed I have a migraine. 
  43. The symptoms I get usually passes after a while, I use distraction / focus on the breath practices, take over the counter migraine tablets as needed, and, if it is a migraine, usually have to sleep. At it’s worst it’s a 7 sometimes I feel nauseous, also get strange electrical sensations across my face and spasming of facial muscles, pain & a metallic taste in my mouth on same side of pain in head, with shocks on opposite side of body (in hand down arm, it’s very weird & unsettling) other times when not a migraine, I take brufen & paracetamol. 
  44. This information is interesting to see as my MS consultant told me “you grow into headaches as you get older “.
  45. Stopped taking Topamax due to side effects, recently given Tramadol to take as needed.
  46. I have had a continuous headache since november 19, 2012 and has gotten worse over time. The headache started when my MS symptoms gotten worse. The only thing that helps is Gabapentin and an eye patch over left eye which has Optic Neuritis.
  47. Sometimes a combination of neurofen and paracetamol helps…..sometimes nothing helps.
  48. I experience constant daily headaches, I wake up and go to sleep with what feels like the same headache for weeks on end – the longest ‘same headache’ was 7 weeks long and actually lead to my dx of ms – it also affects my eyes too.
  49. I mostly have left sided headaches just above my temple and heading towards the back of my head. They sometimes present on the right hand side too. I often have forehead headaches alongside the other type, which feels like a thick elastic band going around my head.
  50. Just to add that I’ve had at least 8 episodes of optic neuritis and now have permanent vision loss in my right eye and i’m now photophobic and have to wear tinted glasses/sunglasses all day long – certainly not good for my job as a lecturer!
  51. I definitely think that there is a direct correlation with severe headaches and ms. 
  52. On the medication question I was a little unclear, I have not been prescribed medication specifically for my headaches; I have learned through using cannabis for general nerve pain and optic pain. I have found that cannabis helps my headaches considerably.

About the author

Prof G

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.

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