Hi Everyone, haven't been on here in a while like 4 years now!! 7 years with the thing and am now 25. Hope everyone is doing well apart from the big "L" word and all its other companions.
Anyway today I just wanted to ask is anyone suffering day in day out (long term) with migraines across the forehead and headaches situated on top of head. They respond to codeine only (cant take a lot in case of addiction), although I have been placed on the brand Amitriptyline before which helped. However its actually classed as an anti depressant also so dont want to mix those in the cocktail too!! I have suffered ever since the diagnosis in 2012 and will get the migraines a lot worse, I know we can label Lupus as a possible cause, but really should I be pushing for further tests.
I have had a head scan at some point, that was NORMAL!!
Im happy to try new meds just not ones classed as anti depressants (just weaned of Sertraline, with MAJOR DIFFICULTY.)
Any help much appreciated
Danielle xx
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Danielle2419
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That is awful to be coping with daily migraines. I do have some advice that I hope you will take. Until recently, there were no medications specifically targeted for migraines. Many of the neurological drugs are used interchangeably. I take an anti-depressant, an anti-seizure drug and a beta-blocker. They all work on quieting the brain. I do much better on them.
The good news is that there is a new and effective drug for migraines that was recently approved. Ask your doctor about it. Because of the cost they may try the other drugs first.
Please don’t suffer like this. They have been researching lupus and headaches for years. The debate goes on. You might want to ask if other tests are necessary.
Thanks for your reply its a never ending battle they are daily when I feel I have done too much at work. I am at a big loss sometimes I just rub Vicks on the forehead as it helps numb the pain, but cant deal with the nausea at the moment.
I may just have to book and a GP appointment more recently I have had them daily accompanied with Nausea and occasionally vomiting.
I’ve had migraines for years - long before my recent investigations for lupus. I was prescribed amytripyline for years as a preventative. Dose increased gradually as told it would work if found correct level. It didn’t and then I had to phase it out gradually as it is very habit forming. I became dependent on it for sleep. Now I take zolmitriptan plus ibuprofen when I gave a really bad attack. That works for me.
Yeah Amitriptyline is a no no for me too I felt it works but came too dependant on it for other symptoms like sleep and felt it triggered depression a bit. Ibuprofen works on minor episodes but as you say these migraines go on for a long time need something with less risks upon taking them and solely for headaches. Sick and tired of side effects of different meds.
Hi Danielle, a sharp constant pain in the same place on one side of the top of my head all the time was one of my first lupus symptoms (although Drs said it wasn't caused by lupus). Over counter medication never really had much impact and the pain was restricting my daily life.
Last year I was put on anti inflammatories for joint swelling and found these also removed my migraines. No idea why or how but happy with the result.
When I get a flare, the first symptom is always severe 24/7 headaches. My skull feels so painful that I cannot bear any pressure on it. Even lying on a soft pillow is painful. These headaches last for months. Painkillers didn't work for me. I even bought a Cefaly, which is a type of tens machine specifically for migraines. This gave me pain relief while I was using it but did not prevent further headaches. What helped me was going on the AIP diet (auto-immune protocol) which is an anti-inflammatory diet. Amazingly my headaches virtually cleared up within 4/5 days. I have now been on the diet for 4 months. I get an occasional headache but it is much less severe than the headaches I used to get and it does respond to painkillers. Best of luck in finding a solution for your headaches.
Yes I have a constants 24/7 persistent visual Aura I am photosensitive get pain in my eyes and forehead. I have overworked jaw muscles (am a gnasher! lol). Nearly had this 2 years now. I try and stay away from pain meds as much as possible unless its to help me sleep. I find they become less effective the more you use them.
I'm currently reducing Sertraline too. As I've found it increases my already occurring teeth grinding problem I've had to reduce it since my dentist told me about my bruxism (about 10 million people in the UK get so quite common). Its a shame as I found Sertraline really good after an a very bumpy first few months. I found it quite a clean anti-depressant after the initial bumpy ride and it settled down.
I found that AIP diet comment very interesting and think I might take that up.
Mine has resisted treatment to Topiramate so my consultant is now writing to my GP I think with Amitriptyline in mind so will talk to my GP about that maybe try that next.
Its a real shame that NICE didn't approve Aimovig but it is available in Scotland and to private patients. Also there will be appeals on Aimovig. I'm hoping that Aimovig will be approved and will work for me.
I'm sure there are more in research and around the corner and maybe even more cost effective for NICE to approve. So hang on in there!
P.S. I had lots of scans too and they are probably making sure that Lupus hasn't done any brain damage so its ok to give you these neurological drugs. Not finding anything bad is good! It means they can give you neurological drugs. Better safe than sorry!
Hi Danielle! I’ve had migraines since the age of 12. I had always found Excedrin worked which is nothing more than aspirin and caffeine. Go figure. Since this couldn’t be taken with any regularity/habitual nature, I asked my GP about other options. That’s when I was introduced to triptans which worked like a miracle drug for me. I take naratriptan when needed for migraines and it works within 30 minutes for me. I also noticed that once I started a beta blocker, headaches were much less frequent. I found that SSRI/SNRI antidepressants make them worse. I’ve never tried a TCA like amytriptilline but some definitely find relief from this as well. As Kay has said, there are plenty of options.
Hope this helps and today is a migraine free day for you!
Hiya, yes I used to have horrific migraines and got out on Amitriptyline- (used to work as a pharmacy advisor) they are an older type of antidepressant but also like a lot of medications can be used for a variety of things. I’ve found them a huge help to me and have only had a small handful of migraines (when stress is extra high - loss of close pet of 14 yrs and break down of 5yr relationship) but I really found them super helpful and been on them now for nearly 2 years. Wouldn’t be without them!
Also head onto the Exeter headache clinic website (first link on google) they have loads of helpful tips! Hope you get relief soon!!! Lots of love 💜💜💜 Leesh xx
Go to the dentist and see if you’re holding your mouth too tight while sleeping. I even clamp my jaws during the day. The dentist remade my dental block and then taught me to practice holding my tongue correctly. I have very few like that now.
I have hashimotos disease(underactive thyroid) and I hadn't heard of Lupus until i came across this post so please take my advice with a pinch of salt
Didn't mean to write such a long post below!
So heres a simplified response, try adding selenium and iodine supplements to your diet, the best form of selenium is Brazil nuts, they are very high in selenium though so be careful not to over dose. One or both may have been the cure for my migraines.
Ive had migraines in the past the crippling type, they would mostly occur at night for approximately 2-4 hours, they would occur during the colder months and seemed to be linked to my neck/shoulder muscles (i have chronic muscle knots). The migraines stopped after i was diagnosed with hashimotos and started taking levothyroxine.
However I had a relapse recently, migraine with nausea followed by vomiting. I suspected i was low in selenium &/or iodine, so i started eating Brazil nuts and taking iodine supplements and I haven't had another episode since (around SEP 19). Could be a total coincidence as I only had 1 or 2 episodes but thought id put it out there as something you could try adding to your diet.
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