Stroke, PTSD, headache?

Hi I was hoping for some advice regarding headaches I get ALL THE TIME. They are so exhausting and are accompanied by loud ringing (tinnitus) and sometimes 'wooshes ' in the right ear.

I had a brain stem bleed from a cavernous malformation in 2009. Pretty much since then I have been on various antidepressants/anti anxiety medication. I was recently diagnosed with PTSD by a therapist. I'm generally a stressful person anyway, and I'm in my last year at uni, and have a 3 year old.

My GP is pretty useless. I've been to my drs 3 or 4 times in the past 12 months with very depressive episodes. I also have IBS which flares up when the previous worsens. As do my headaches. Regarding the headaches it's 'take some paracetanol'.

I don't know whether the headaches are related to a brain problem due to the stroke/surgery. Or resulting from the PTSD/depression. Because of this I don't know how to push my GP to refer me on for further help on treatments, or who to refer me to.

I'm not entirely sure what I'm asking but I'm just looking for some light.

Thanks for any response,


25 Replies

  • Hi Jess,

    Sorry I am unable to help - not medically qualified enough and can only suggest that you ask your previous consultants more - do you have access to them fairly readily ? I have an email address I can use for mine..

    Asfor your Gp - can you change ? Doesn't sound very sympathetic or helpful.....

    I do understand how confusing the varying symptoms you have abs how worrying headaches in particular can be ...... since my cvst in Oct 14 I have been worried several times but now have a fair idea of what is "normal headache" and what might need further attention.

    Do you do anything as stress relief ? Mine is sport / swimming . And meditation. You need to take some time out for yourself too :-)

    Vaguely remember ( when admitted and after hospital) being warned about taking paracetamol too regularly - as something about becoming immune ? But do check that out.

    Easy other points might be to ask if you've had eyes checked and vitamin b12 levels ok ? Just some thoughts ....

    Hope you find something positive soon .... K

  • Thank you, some really helpful advice. I started yoga last week and it made my 3 day headache go... for about 12 hours. Defiantly need to fit more relax time in. I'll have a look into the vitamin b12, I eat really healthily but can't help having something extra.

    I end up seeing a different GP each time I go and it's so rushed I don't feel like I get anything from it!

    Thanks again,

    Lots of love


  • moo we may not be medically trained but we have something the docs don't have weve been their.

    that was good advice you gave jess

  • Hi Jessica

    I hope that's right.

    Mine is a brain stem injury specifically the pons.

    Can I suggest requesting a MRI scan ENT appointment and referral to neuropsychologist or neurology.

    I know that sounds a lot.

    For now build in as many rest periods as you can in your day. Make sure you are drinking plenty of water (at least 2 litres a day) and taking extra Omega 3&6.

    Also avoid caffeine.

    PM me if you want to chat more.

    Love n hugs


  • Yes but call me Jess :)

    Mine was a pons bleed too! I will request for the appointments and scan. I haven't seen any consultants in years, except ophthalmology and plastic surgery for my face. I will also look at the extra omegas, I eat a lot of oily fish but can always add to it. I probably drink too much coffee though! Need it to get through the day. I also have a chest infection at the minute which is making my head worse with all the coughing! :(



  • Seriously Jess start to phase out the coffee.

    Even if it means one cup of de caf for every 3 of caf. Don't go cold turkey or the headache will make your current headaches feel like the best day you've had for a year or more.


  • Hi Jess as already suggested I think you should get a referral to a neurologist or neuropsychologist. At my last referral the neurologist said he thought the sensations of pressure I get in my head are migrainous in origin. I don't get headaches per se but I used to suffer with the pressure all day every day, from the moment I woke to the moment I went to sleep. So, very hard to function.

    Now I treat it like having daily migraines and have experimented with various over the counter medications with my GPs knowledge.

    Personally I find 2 paracetamol combined with 2 ibuprofen give me 5-6 hours respite, at that point I often don't need any more but if I am still needing to be particularly active and busy then 2 paracetamol can just top up.

    The neurologist told me to discuss any medication with my GP because I didn't want to take migraine specific medication if I could control it any other way.

    I find that warmer, high pressure weather is much better for me, the sensations of pressure in my head are less frequent, some days not there at all, so roll on summer!

    Ask for that referral and meanwhile keep a diary so you discuss specifics in detail at the appointment.

    Best wishes Janet X

  • Hi Jess. Don't let any of the GPs brush you off. Tell whoever you see that you're not satisfied with treatment (or lack of) you're getting at present and want a referral to a neurologist.

    If you're still struggling with symptoms, you're entitled to more care than you're getting at present so don't be fobbed off by come-day-go-day GPs.

    Meanwhile remember to keep yourself well hydrated and try to walk (if only round the block) each day to de-stress and regulate your breathing ; It should help to minimise the headaches.

    The Tinnitus is a pain I know. You might need to find distraction methods to prevent it driving you nuts. I use a CD with the sound of torrential rain to mask the sound when I'm really fed up with the constant intrusion !..................or an MP3 player & headphones.

    Best wishes, Cat x

  • not been referred to an ent specialist cat ? I saw one had amri scan , then saw an audiologist for a hearing aid works

  • Hi Jess

    You have my sympathy, as a frequent migraineur (I lose anything up to a week per month in bed with debilitating migraine headaches, plus have what I call 'normal' headache regularly too).

    Ditch the caffeine. It will give you a headache as you go through withdrawal but after that you will have lost one aggravating factor.

    Rest and meditate regularly. Use stretches and gentle exercise to keep your scalp, neck and upper back as tension free as possible. Consider chiropractor treatment if like me you carry your stress in your neck.

    Keep a headache diary - it will help you identify any triggers (my headaches are triggered by hormones (roll on menopause!), disturbed sleep (have to live with that part as it is par for the course with M.E. as the sleep centre is affected), and stress, particularly emotional stress. They are also caused by red wine and caffeine, both of which I now avoid.) The diary will enable you to get your GP to see that this is a major concern for you. Note onset, type of pain, how long it lasts, what meds you take. Also note anything during the last 24 hrs that could have triggered it, paying attention to stress, sleep and diet.

    See whether there is a neurologist specialising in headache near you and if so armed with your evidence ask for a referral. GPs are often more help if you tell them what to do, I have found, rather than going to them for answers...

    Find other forms of pain relief - you don't want to be the territory of continually taking meds as you will end up with withdrawal headache from that too. I use wheat bags, feverfew, cold compresses....

    Hope it helps.

  • Most people people with IBS are reacting to wheat...totally cut out wheat, rye, barley and oats stick with mainly rice and some corn/maize....learn to make buckwheat bread ...the recipe is at ...buckwheat is not a grain so you are safe to eat it. Definately cut out all traces of caffeine not only does it knot up muscles in your neck so putting pressure on nerves leading to tension headache, pain behind the eyes etc, but it messes with brain chemistry..if you haven't had a coffee for several weeks and then have nice strong Americano or whatever it will hit you like a line of coke! is a very, very powerful drug!

    Also pain killers like paracetamol are bad news for the injured get some professional advice on which painkillers you can use......all this from hard won experience.

    Good luck, be strong and focus.

  • Hi, just got interested - why is paracetamol not good for BI?

  • Iwona the hospital gave me French equivalent of Paracetmol in and on discharge from Hospital here, after my BI, so can't answer your query. My Dr would still prescribe it if I wanted. They don't have a problem with it here and I don't take it anyway

    Which is good:-)

  • Hi alright - I agree with coffee it's definitely a stimulant and too much is not good. But I must ask given your other suggestions. iBS is irritable BOWEL syndrome Yes? the gut comes well before the bowel, and while I find I can tolerate some of the grain products without it giving me immediate reflux problems, others I can't or I start heaving a little!

    I eat for breakfast, 2 weetabix with milk, pour honey on for sweetness. sometimes I slice a banana into it as well - not daily because we can also have too much potassium, which bananas provide. All goes down a dream with no digestive problems. I can also eat porage oats, but give me white sliced bread, rice, French baguette (they use a different flour here) and my stomach is reacting like mad - this is where the oesophagus and the gullet meet and not only am I having the reflux but I also have to blow my nose and find all froth or a few grainy visitors in my tissue!

    I think much depends on what other health issues there are at the same time, my 1st intake every day is my Levothyroxine (I also have hashimotos, ( and non specific cirrhosis, dx since my BI,) meaning my immune system is compromised). I take my Levo with a large glass of water, which sometimes causes reflux also, then wait up to an hour before eating or drinking anything else! That when it's a necessary visit to the toilet as soon as I get up again!

    Afterwards, it's often a couple of little chews on a small ginger nut biscuit whilst I make tea, get myself sorted and then have breakfast. The right minerals and vitamins also help with digestive problems. I have a daily glass of fresh unsweetened orange juice, and have just started on a course of Vitmin D supplements today. Most of above info, I've learnt through my own research after Thyroid UK started making some really valid points -

    Someone said on here replying to Jess, about telling the doctors what your learn from other people who have the same conditions, how they help improve their own health - be in mental or physical. It can be done, and is so necessary for our own sense of wellbeing - and if that's not there then the bad health can start to kick in caused by the stress of knowing there is something wrong - but not what or why!

    I think more blood tests shouLd be done if the cause or condition cannot be named or checked before Drs start doling out chemically produced meds from Pharmaceutical Conpanies. We should have Vit B12, Vit D, Folate, Ferritin just to start! Ask for copies of results from .drs and can always out on Labtestonline - like we can check prescribed meds out on

  • OK so I generalised about most common cereal intolerance as cause of IBS...but if you can not eat white bread you are in fact wheat intolerant as goes for the other grains that you mention....check out the buckwheat bread as I suggested and of course buckwheat cooked like rice, pancakes etc and try a cereal free diet for a month...buckwheat is not a member of the grass family unlike the cereals and is in fact related rhubarb!

  • Hi alright, I can't buy buckwheat bread in my supermarket here in France - I know because I've checked all tbreads out they sell. I am not anywhere near a local boulangerie either. As I said I can tolerate weetabix cereal, and I know I can tolerate the half/white half/brown bread here called 'Pain de Mie Complet' if I want a sandwich or with soup. I've lived here 8 yrs so pretty au fait with what the French buy and eat. I was at lunch Weds with a french woman who also can't tolerate Baguettes, but like me can eat the Pain de Mie! She also has a thyroid problem.

    Buckwheat is American isn't it and if you are based in the USA, it explains why it and the many other grains you mentioned above, not me, may be more easily available for you than us.

    Also this whole post started by Jessie is about headaches not grain intolerances. I agree with many of the other replies here made by longstanding community members and with Brain Injuries long term OTC bought and self medicating, can make some neural effects worse rather than better, as well as being down to other health conditions.

  • No buckwheat is Russian you have to buy the flour and make it is very easy, mix it up as per kneeding

    Pour it into a loaf tin and let it rise. you should find the recipe at... ' '

  • Not in French supermarket here and I don't have an oven! Also as said previously I'm not allergic to wheat!

  • and fatty food that used make my wife double over

  • My daughter's neurologist advised avoiding paracetamol and her progress/recovery improved....but check it out....though it seems obvious that any drug that affects how the brain reacts to stimuli should be questioned...later on she was prescribed propranolol which worked very well for her less anxiety more relaxed slow improved in persistent headache

  • jessic93..ibs this may also be gall stones so you need to get that checked out.

    symptoms after a stroke can be very much like ptsd....mood swings, aggression, noise intolerance and depression.

    I too had problems with my ear. my gp referred me to an ear nose and throat specialist.......I was also give an mri scan........on fathers day if you will!!!

    I told my gp and psychiatrist what they could do with their anti depressants because I wasn't we agreed id take epilim to control my moods, it works but I still have my day hahaha.

    I think you need to go back to your gp and tell him what you've been told by people whove had strokes and understand exactly what you've been through.

    just say to him you haven't had it so you cant comment on it.

    keep us informed on how things pick up that phone make an appointment and make a nuisance of yourself


  • Hi Jess's hope your headaches are lessening and improving. S xxx

  • no surprise there then doctors are useless must be part of the training, best advise i got was from my cousin , which was go to a hot country near to the equator , i do feel better than when in england same problems but managable only just, i think less stress is important for you as myself as well stress has a knock on effect which affects the whole body as well as your sanity ,

    medication can cause problems the side effects can be the same as your symtoms

    that happened to me so i do not take anything now only sunshine,

    find the things that suite you food friends lifestyle things that make you feel good

    that is what i have had to do with no help from anyone,

    it works in part, the community here will give you some advice as well

    we are all in it together, no surrender

    lots of love XXXXXXXXXXX


  • Hi Jess, i can't add any advice, but wanted to say that following an accident last year, while doing well in lots of other ways I still have exactly the symptoms you describe. The pressure usually starts st night from early evening onwards but can strike at any time of day. The tinitus and loud drilling/rumbling and whooshes can be startling and upsetting - especially when you've had enough of the day :) I haven't been back to the doctor about it because so many people on this forum mention symptoms like this I've begun to think it must be normal. Sounds like you really need s neurology appointment though. I've been waiting for mine for three months and am booked to see one in March, so if I find anything out ill message you. Take care and hope you get sorted. x

  • Hi Jess - are you a member of cavernoma alliance uk? They have a secret Facebook page and if you ask the question there then you would probably get some specific advice for your condition from others in the same situation. I get headaches from my brainstem cavernoma and I am taking Propanolol (a beta blocker) for them which helps enormously. A neurologist would hopefully be able to help you.

You may also like...