I know I’ve been on here multiple times, I do mindfulness and yoga, practice somatic tracking, but I still lie in bed everyday with intractable migraine following a blow to the back of my head 3 years ago. I have tried twice to commit suicide because the migraine simply does not lift. I am meant to be going out with a friend to watch a film, but just can’t. Another cancelled event.
I know some of you have found a way out, but after three years, surely there should be some change? I try hard not to get down, but depression and anxiety are comorbidities with migraine.
I am getting pink glasses tomorrow, and maybe pain will lift. My doctor has tried triptans, steroids, all the gepants, Botox, Ajovy injections and nothing comes of it. Am I the only one to feel desperate with this? I am so low. What causes post concussion syndrome and why has meditation not worked?
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Rosebud66
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I haven’t actually read the report but I think my brain was taking in too much info it couldn’t handle, so that has been a stressor for migraines. Strangely I was at my best during covid because I wasn’t catching viruses from people all the time. But then I had the accident that led to my migraines becoming chronic.
is it legal there to try some cannibis oil? Or CBD oil? Getting the does correct is important but could be worth a try?? Hope you get some relief soon as I know how debilitating these are. 🤞🤞
Yes, it can accumulate in your system, so I think it needs to be handled by someone who knows what you’re taking already because I tried it before and as I’m already on Amitryptyline it just backed up that med … made me super drowsy. Perhaps not a bad thing.
hi I’ve just read your message .. i to am depressed .. its tough dealing with constant pain and a body that for me I woke up in .. its not migraine s for me but pre my accident I had horrendous migraines from work related neck and shoulder repetitive Injury . I found deep massage like sports massage helped me more then anything as it was from the muscles in my h ad and shoulder that where causing the migraines .. not sure if you have tried this .. even feeling anxious /stressed would make the muscles tighten and a migraine soon kicked in … as for the depression I have just increased my meds as I’m not dealing with a few months for more problems with pai. And all I have known is to keep fighting from the off and have now reached a point of I don’t know what to do … I think I’ve reached a level to where I’m trying to except the new bits of me .. I hope this made sense .. Sue x
It does hurt when deep massage is being done but you need to say if they need to reduce the pressure and the more you have done the more pressure you can stand .. .. might be worth seeing another massage person as they are all very different .. I have also had acupuncture which can relax muscle tension .. .. with the massage I get it every one to two weeks as without it the muscles knot up again .. Sue 😊
Yes, I understand. I’ve just been told by the headache nurse that this is a level of pain to be accepted and to try and manage the pain…and treat it holistically. But how?!
The hospital should be able to advise you on pain management holistic approach it’s all about visiting the pain in your mind and with practice you can relieve the pain .. all of these do work .. sometimes you need more than one thing and practice in mind management .. it is awful having to have to do all of these things and I do hate so much of it all but please give anything a go as it does relieve pain .. Sue
Just to support this, I don't have experience with professional massage but getting a friend to massage my head or shoulders (difficult I know, as you need the right friend!) gives me some limited relief when in the middle of an attack - I think it distracts my brain.I've also wondered about exploring getting proper massage as I think I'm carrying an almighty amount of tension in my neck etc. Wonder if you're the same. Appreciate even getting to appointments is difficult though. Best of luck.
Hey. I don't have a solution. I just wanted to say I feel for you and can totally understand why you're feeling like this. Migraines have made me feel a bit like that in the past. (Ironically my headaches seem to have changed nature post-TBI.)I hope you can get some help with how you're feeling as well as the migraines; sounds like both are maybe feeding each other. I'm sorry not to have solutions but just wanted to say I'm rooting for you and really hope you get a resolution. Please call someone if you're at that point again even just to get you through those moments.
Hello Rosebud, ok, while everyone's tbi affects them differently and it sounds like you've tried very many migraine treatments. Can I say that I had 24/7 headaches and upticks like migraines about three times a week at first - so to have that for three years sounds absolutely appalling for you. With the benefit of hindsight (and a largely headache free life), the 24/7 headache was apparently caused by trapped nerves in my neck at the base of my skull that the concussion specialist sports physio freed up, but the migraine-like episodes ( which didn't respond to any standard migraine treatments) were apparently a response to screen usage and to the fatigue after my concussion.
If I use a laptop screen for any amount of time I can still trigger a migraine - likewise for a number of years now, if I ignore fatigue one day, I may get a headache - if I don't stop and take notice in the following days, I'll get another, and if I keep plugging on, in excess of what I can comfortably cope with, the headaches then basically join up and I'm stuck with them for a week or so. So for me, the route to getting rid of the continuous headaches was by getting my fatigue under control by using fatigue diaries and taking regular breaks. (Plus taking duloxetine for a year or so, which is antidepressant with a pain relief element used for fibromyalgia).
Meditation that involves visualization I found almost impossible after my MTBI - far too difficult to hold different images in my head. Mindfulness meditation based on breathing allowed me to take regular 'brain breaks' in the day as part of managing my fatigue levels. Plus mindfulness practices helped me by being more aware of how I was feeling, so helped me to notice when I was getting tired/ fatigued and to take a break. I don't think meditation and mindfulness fix post concussion, but they do give you tools to help you cope with it.
The other thing that I had going on was oculomotor and vestibular problems which I did physio exercises for. Plus exercise above a pulse rate that you can comfortably tolerate can trigger headache and nausea and a sensation of a tight band round your head - which seems quite migraine like.
So there could actually be several different things contributing to your migraines which might be worth looking into?
My first neurologist just tried ordinary migraine treatments on me and they made me feel like hell, without touching the migraines.
Do also try tracking your migraines on the migraine buddy app, because it might be possible to spot a pattern and/ or triggers - it's also useful to tell if any new treatment is making any significant dent in your symptoms.
I hope you find a solution soon. Neurologist number two insisted that post traumatic migraines are not chronic in nature, if that is any comfort.
Thanks so much for this. I am going to a sports physio starting next week and it does seem like I have trapped nerves. The fatigue is huge for me and I think I boom and bust… so I have just bought the calm subscription which I will use every day. Have just spent half an hour on screen and that’s enough! So screen time must be limited. I will try the pacing diaries… that sounds like a good plan. Thank you so much for taking this time to reply. Really appreciate it.
You're totally right not to be convinced! The issue with these arbitrary time limits on PCS is actually mainly because most of the research stopped at around the six month mark.
I struggled with Calm because of the visualisation thing - caused me problems - always could do it before the concussion. Headspace worked well for me though.
Managing fatigue is key I think. The advice I got was to find your baseline - which is only what you do on a bad day - and only add half an hour of activity on a week - doubling back to the lower level for a week or two longer, if it is too much. Tedious but steady sustainable increases of activity do seem to work.
I had a surfboard slam into the back of my skull during a storm, but because I didn’t pass out I carried on normal life, was just unsure why my migraines were snowballing. Finally after 6 months I changed doctors and he diagnosed me with post concussion syndrome and referred me to neurology. The appointment that came was for a year later. Before I even got to that appointment my daughter drove me at high speed into a wall.. that completely blew me sideways and ended up with a second concussion. The neurologist told me I might never recover. Just wondering if I should go to a specialist concussion physio because though my MRI was clear I still think something isn’t right with the back of my skull/neck.
That was a rotten combination of events. I'd had a previous concussion that I coped with, which is apparently why the second one was a problem - not as serious as yours though. Sounds like whiplash could be in the mix as well. The sports physio specialising in concussion did a lot of work on my neck that was very different to the regular physio I initially went to after the accident. My neurologist who specialised in post concussion, referred me to him.
I was very lucky, my first neurologist sort of gave up on me, after trying out normal migraine treatments, and referred me to a neurologist friend of his who had an interest on post concussion - who while not a very sympathetic character - checked me over and told me that he would refer me to his team, and that none of the treatment was negotiable, it was all or nothing. Theo Farley was the concussion specialist sports physio he referred me to, together with a neuropsychiatrist to manage meds (I found that neuropsychiatrists are way better with drugs than neurologists are - it's the way the disciplines have developed over time) there was a neuropsychologist as well, and so all three coached me on handling fatigue, and were all very matter of fact about all the symptoms being part and parcel of having a brain injury - it really normalised everything for me for the first time.
Theo Farley lectures on sports concussion treatment, so there must be other people out there doing the same things. With hindsight, I think if I had to choose just one specialist for recovery, I would choose him.
Here's a pubmed paper on oculomotor dysfunction after concussion in sport. It refers to post traumatic migraine interestinglyncbi.nlm.nih.gov/pmc/articl....
That’s very interesting and may explain why I can’t shop at Tesco’s or any place where there is noise, I.e, music and movement. Supermarkets and shops that play music are too much for me! Think it may be time to go to a concussion clinic. Trouble is, they’re really expensive where I live. But I have been diagnosed with over stimulation visually and auditory, hence my pink glasses. Thanks so much for your advice.
It's a classic concussion symptom not being able to cope in supermarkets and large stores. I still don't love them, but it's a lot better now - but I tend either go online on my phone, or go to smaller shops for preference. I haven't tried airports yet. Doing the physio exercises for oculomotor and vestibular dysfunction helped enormously. I couldn't skim shelves visually before the exercises ( even in a nice quiet library)and it was a nightmare trying to walk around a supermarket, I had to fix my eyes on a single point ahead and walk towards it. A simple exercise to practice is to sit down and hold a pencil up in front of your eyes and move it from side to side fairly slowly following it with your eyes but not moving your head. You can gradually increase the time you spend doing this, and graduate to doing it while standing up ( which was bizarrely harder to do)
Re the concussion clinic - are you in the UK? Some exercises can be found online.
Yes I am and I found some post concussion yoga on YouTube which does a lot of ocular eye exercises, which are hard to do, so I just do it until my eyes feel tired before getting dizzy. I have started cold water swimming again which makes the migraine vanish, have no idea why!
Hi Painting-girl, just a quick question (4 th day in bed all day migraine 😬), did you have a scan that showed your trapped nerves? My MRI was clear, so I wondered about how the physios knew you had trapped nerves? Thanks for taking this time! And did you get it on the NHS? So far, I have had to go private!
Hi Rosebud, no there wasn't a scan for the nerves in my neck. Theo explained that some nerves in the neck don't go via the spinal cord but straight to the skull / brain. He could basically prod a point in my neck at the base of my skull ( from exceptionally dodgy memory, sorry) and trigger a headache in my right temple. And did a lot of unusual physio to loosen it up ( I'd already read about necks and concussion but my regular physio I got through my insurance didn't touch it - definitely different techniques being used, which is interesting) A box of books fell on my head from above, so it makes sense to me that there was some neck involvement going on..
When you get a bit of respite perhaps check out the Migraine Buddy app to see if you can use it to identify any triggers.... Might help you see some patterns
Yes, that’s a good app….I just use headache charts atm. But am using a pacing diary which notes increase in pain at certain activities which might throw up some interesting patterns. Trouble is my migraine is 24/7 so have to identify triggers that increase migraine, such as anxiety or particular thoughts .. I’ll never get better again, etc!
Sounds really rough Rosebud, I really feel for you. My headache was constant at first with more migraine-like upticks a few times a week. It's easy to get into a feeling that it all goes on, and you've had this for ages. I found the migraine buddy app useful to download and print out the diary from it to talk to the various medics when I saw them - sort of proof. And it gives you evidence of whether any particular intervention makes any difference - and you've tried so much already. Hope you get some comfort and support from here x
My helpful neurologist that took the team approach, did clearly state that post traumatic migraine isn't the same as 'normal' migraine. My 'migraine drugs' didn't work either. Living with it must be hell though. Chances are it's an unholy mixture of things knocked out of gear by your TBI. Interestingly I put myself under a huge amount of stress and activity (and lack of sleep last night) today and have triggered a new headache - haven't had one for ages, but am still functioning. I think over sensitivity to stress is a thing, and what counts as stress early on is a very tiny amount of exertion. Perhaps try and tackle potential fatigue first - can you get yourself to a point where you're doing so little ( including reading, tv, phone use, exercise, stimulation from bright lights and noise) you actually don't feel too bad the next day?
Six years on from my MTBI, you might be vaguely encouraged that stress now includes newly and inadvertently running a u3a group and rather rashly entering three flower arrangements in competitions on Saturday - apparently necessitating two trips to different supermarkets ( which I usually avoid) to pick up flowers and food shopping in both as an add on, then a trip to the florist to pick up an order and put in a new one for church flowers next week, while effectively substituting coffee and chocolate for lunch when I don't usually do caffeine - cue mega slump this afternoon (And being somewhat miraculously in a brand new post TBI relationship, and having increasing caring responsibilities for my mother). Reviewing today I really think I could have organised things a little bit better - I've so Earned this headache.. 🤔 but it does show me how far I've come by building things up very gradually over time. Though I think next Monday is still going to be a bit of a slump moment ..
Well that’s encouraging… look how far you’ve come. And you’re right, I kept telling my doctor this is a new headache.. I don’t think migraine meds are going to work, but perhaps doing small things bit by bit to build up will help…. I had my big migraine after anxiety all day the week before and overstretched… so my body clearly can’t take stress, so it’s how to stay within the comfort zone so that anxiety comes sweeping in!
Hi Rosebud66The headaches can be really hard to take, I really feel for you.
Meditation is actually more difficult for bi people for a reason I don' t remember .
Anyway I used to get to where it would feel like it was starting in the air around the base of my skull/neck and then it felt like I was literally burning, with flames - it would start there and spread. It was a 3 day in bed episode where just stay as still as possible and try to zone out - not that it really worked but moving made it worse.
I tried something that helped and I went as regularly as I could for a bit and eventually it calmed down. More on that later.
At the time I was able to get some massage, then - the headaches still happened though.
If there is a massage school close to you, you can talk to them because sometimes they will do a reduced rate if you have a brain injury. Where I live the local bi society negotiated a rate with them.
The thing I added that helped though was where they do small injections of something in sore spots in the back and neck, in my case they used lidocaine and something homeopathic. I am not sure what you call it but this is the website here in Canada, it is covered here on doctors referral. Maybe you have something similar there? Ask your doctor. Here is the link to the one here. There are a few different sorts of it out there.
I did feel horrible for a day or so after the treatment, but it was way better than the alternative.
Before this clinic started I heard they would do it at the hospital as part of a pain clinic, so that may be true there. I also heard someone call them sugar injections , so maybe they do it with plain glucose in some places?
Anyway this made the biggest differences.
As for meditation, everyone has their own method. I found my own way from before wasn't quite doing it. I found the Buddhist association of Western Australia on YouTube by accident. They give free talks on Fridays and they are all there- some of them are guided meditations , which weren't what I thought. I am not a fan of the type where someone talks the whole time... this is different. He basically talks and then talks about getting comfortable and starts talking less and more slowly and then you are just in the zone. (And it's secular in nature, the actual instruction on the religious aspects are separate. They also give talks on the buddhist point of view on various common things that happen in life, on questions asked by people who follow the channel.)
Also, look up 'community accupuncture' and see if there is one in your area. Some acupuncturists realize a private appointment can be beyond many. In China accupuncture is just done in a room with lots of people there. So they got a version of that going in the west. There is a room full of chairs that recline. A person is coming in every 10 or 15 minutes. There may be 6 or a dozen chairs scattered in the space. People have on shorts and tees or loose clothes where they can roll up pant legs and shirt sleeves. The needles go in the available areas. Then the person is left to zone out for an hour or until they are ready to leave. Where I live a private accupunctute appointment is 125 and up, the community clinics have a sliding scale where you pick the price - 25 to 45 is the scale where I go.
The other thing that may help is ear protection. I just saw some devices that are made of soft silicone and are designed to take down the edge on noise for people with autism. Evidently you can still hear but things are not as harsh on the system. I will the link and post it below.
Some people find the pink glasses helpful and some don't. I went to a nuero optometrist and he put some on me, I didn't notice anything. He said the reaction is either 'oh wow' or not. I didn't 'oh wow' so he said they weren't for me.
There are also programs you can go through which are pricey. It may or may not work and you will feel totally gross while going through the program. They guy said the program would help but I can't be laid low for the year it would take and I don't have 4 or 5 grand to put down on something that may not work. I did talk to a nuero doc at the time who said getting a eye glass rx is useful but then program has no standards of practise so is hit and miss.
They may also recommend prisms for your eye glasses and the people I talked to that had those said they were great.
That's all from me, let me go find that ear thingy...
I too have migraines much more frequently than I used to. Interestingly my neurologist did suggest increasing the dose of melatonin that I take to help me sleep and said that it can help migraine in higher doses, so avoiding all the classic anti migraine medication.
Another small point which may be unique to me or not, is that some of the “migraines” were actually coming from nerves in my neck. Now I know what you may think- they would feel different to a migraine but as I have experience of both, I can confirm that even though I thought it was a migraine sometimes I was wrong.
I saw a chiropractor who felt around the back of my neck and could mimic excruciating headaches in various places depending on where pressure was applied. For example you can mimic an “ice cream headache “ by pinching your own sternocleidomastoid muscle (the long diagonal muscle at the front)
Similarly I have some facet joints at the top at the back that give severe pain from occiput to frontal area.
Not all of them are magically cured obv but I was surprised at how many were nerve related.
We hold so much tension in our necks and a life of looking at screens and books has meant the additional aggravating factor of head injury makes us more susceptible.
It just might be worth a go as you have tried everything else.
Thanks for that .. I went years ago to a physio who worked on my neck and now I press all points down the back of my neck (but hadn’t thought of the front) and yes, sometimes it really hurts parts of my head. I keep pressing until the pain subsides and do the neck exercises he taught me. Is that what you mean? And am I pressing on nerves or muscle? As this worked years ago, I have started again… I suppose it’s self massage…
It’s often trigger points of tiny area of knotted muscles. Sometimes it’s a facet joint that’s a bit inflamed and stiff and repeatedly pressing the area mobilises it. Around these areas the muscles will be overworked and essentially are in a state of almost cramp. If it’s muscle, rather than doing pulse pressure, it’s really effective to find the knot and press it hard and stay on it counting to around 15. This usually melts knots away. It works by preventing the blood supply to this small area of muscle so it loses it’s oxygen temporarily and ceases the over contraction.
That’s really interesting. I would love to get off all these meds and you sound like you understand the neck issues. Is it possible for a physio or myself to release trapped nerves in the neck/ skull area?
It was in my case. I have a great deal of faith in my chiropractor but have limited experience of neck physios. Its obviously very dependent upon individuals
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