Hi,
I’m very new to all this having just been diagnosed with RR MS in April. Im wondering if anyone has encountered anything similar to me as I am interested to know what, if anything helped.
Ive had a frontal headache for just under a year now. I was prescribed amitriptyline before diagnosis to help with nerve pain and for 7 weeks when I increased the amitriptyline I had no headaches and was back to myself again. That is until I had a lumbar puncture and it came back and I havent had a day without it since. Consultant was then unsure if it was the amitriptyline possibly causing the headaches and advised to come off them which I have since done and since my last tablet last week my headache is worse and now have nausea also. I am told that headaches arent typically MS symptoms. I am unsure where to go, what to do from here and would be really grateful to hear from anyone who has been through anything similar. (Also on Techfidera) x
Could it be migraine?
I had the mother and father of headaches for a week after my lumbar puncture!
The main symptom of a migraine is usually an intense headache on 1 side of the head.
The pain is usually a moderate or severe throbbing sensation that gets worse when you move and prevents you carrying out normal activities.
In some cases, the pain can occur on both sides of your head and may affect your face or neck.
Additional symptoms:
Other symptoms commonly associated with a migraine include:
feeling sick
being sick
increased sensitivity to light and sound, which is why many people with a migraine want to rest in a quiet, dark room
Some people also occasionally experience other symptoms, including:
sweating
poor concentration,
feeling very hot or very cold
tummy (abdominal) pain
diarrhoea
Not everyone with a migraine experiences these additional symptoms and some people may experience them without having a headache.
The symptoms of a migraine usually last between 4 hours and 3 days, although you may feel very tired for up to a week afterwards.
I have suffered from headaches both pre and post MS diagnosis. Unfortunately, I only pursued getting them checked out post diagnosis and was put on Amitriptyline (I was also on Tecfedira) as you are. I don’t think it made headaches worse in my case but it definitely contributed to added fatigue and I felt ibuprofen was better at pain management. I came off of amitriptyline and in all honesty have found no migraine medication that works and manage any pain I may get with Ibuprofen, it is no longer believed (at least for me) that the headaches have anything to do with MS and this is because I have seen a reduction since seeing an osteopath and generally my MS headaches I get when relapsing also fade when the relapse was over.
I would recommend keeping a headache diary capturing what you were doing before, what pain management you used, symptoms and anything else you were feeling when having a headache and use it whenever having a conversation with your doctor and MS team, it’ll help them assess if it is a migraine, MS headaches or something else.
I would also suggest pushing to consult (if you cannot see one privately) to see an osteopath or physiotherapist as they’ll be able to help if it is a headache caused by other physical stress (for me it was due tight neck muscles of all things) and be able to perform massage therapy and work on the tension. For me this greatly reduced the headaches where nothing else would.
Hope this helps you.
I’m in Canada and have been taking low-dose Amitriptyline for chronic headaches. It took a few weeks to kick in, but my headaches are now less frequent and less severe. I take it at night since it can make you sleepy. You’ll need a prescription here, and it’s often covered by insurance. Side effects for me were mild and faded over time.