This is my first post on here, struggling with 24/7 headaches and looking to see if anyone is going through/has gone through anything similar.
The headaches started back in May and I first went to the doctor when they didn't go away after about a week. The doc put them down to stress and sent me away. Since then I've been back to the docs numerous times (they have done neurological exams which were all good and prescribed beta blockers )
I went to A and E one day when it was extremely painful and had a CT scan which came back clear. The GP seemed reassured by this but said he could refer me to a neurologist seen as the problem is still ongoing .Currently waiting for my appointment.
Other thing I've tried is a mouth guard as I wondered if I suffer TMJ due to clenching my jaw. But no improvement!
I also have ringing in my ears and have noticed some floaters in both eyes.
'Ive also had antibiotics to rule out a sinus infection.
Has anyone experienced anything similar/any ideas? I'm getting so depressed due to the effect this is having on my life and the worry.
Thanks!
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Katie66
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Hi Katie ...i went throu similar to you ..I had non stop headache ringing in ears burning in ears/head/face ..shooting pains in my head ..all sorts of weird crampy pains..I had myself convinced it was something very serious ..doctor kept dismissing it..said stress..also ended up in a and e ..I finally got to see a neurologist ..had MRI ..MRI with contrast ..all clear ..I tried many many different tablets . had to stop all over the counter painkillers in case of rebound headaches. it took over my life I missed work family ocassions etc etc ..that started 11months ago ..I finally got neurologist appoint four months ago ...I am currently on two meds that have lessened the pain greatly and some days I have no pain!!hang in there and try not worry (easier said than done)hopefully neurologist can sort you out ..as you research more you will find there are lots and lots of people unfortunately going throu the same thing ..its no fun
Thanks so much Gemma, this has given me some hope. Did they ever figure out what caused your headaches? Fingers crossed the neurologist can help me as I'm also missing so much work and family/social things
No I've always suffered with migraine but only once a month around a period but nothing like this ..he diagnosed me with chronic daily migraines ..I was having 25 days a month with pain/symptoms ..that's down to about 15 days a month now and the level of pain has gone down too..do you ever have any headache free days or crystal clear days as they call them ..the reason I ask is it was one of the questions I was asked ..
Sorry that last bit wasn't very clear ..so I was asked this and my answer was yes because there were a few days a month that I was absolutely fine ..this was when I got the chronic daily migraine diagnosis whereas if I had of answered no I never have a pain free day then that would have been new daily persistent headache which I'm guessing is different and has a different line of treatment
I too used to get migraines once a month around my period. I started taking a pill that stopped my period so they disappeared. I don't really have any days with no headache pain, just days where it is a bit less. But then days like today where it's awful! Some days it feels just like a tension headache but others very painful. Similar to you my headaches can move around different areas of my head and different sensations including the burning you talked about. It's nice to talk to someone who has been through something similar, glad to hear yours are getting a bit better
I don't know how you cope .at least I have some pain free days ..its fairly bad today too my head ears and face are burning with a tight feeling around the top of my head (feeling like a hypochondriac) your right its nice to talk to somebody that knows how it feels and how debilitating it is because others seem to think its "just a headache".I am so terrified that the meds will not get me any further or even worse back to square one ..have you tried triptans . they worked for me for a long time before it became chronic
Headaches are so debilitating! It's hard to stay positive. Stick in there with the meds, it sounds like they are doing good so far! I have tried triptans, sometimes they work but not always. I have been given beta blockers but they don't seem to help much. Did your MRI show anything at all to give clues? Wondering whether it's worth requesting one if it can maybe identity any issues
I totally agree ..it starts to make you feel tgat you are existing rather than living Absolutely nothing showed up ..MRI all clear but I have to say it did give me a certain degree of reassurance because you worry that it could be something awful ..I have done a lot of research since this began not to mention tormenting the life out of people with questions and its hard to believe but sadly true that headaches/migraines are so common with such varying symptoms..and its a case of trial and error to find something that works ..I also found neurologist to be more positive than gp so hopefully you get that appointment soon.
I know, I find it hard to believe that these kind of headaches exist and that so many people suffer from them. I just thought that there must be something seriously wrong with me. Thanks for your help and support
Your very welcome and thank you to you too ..you are the first person that can relate to the burning sensations I feel and that has given me even more reassurance ..I hope you too find your road to recovery and feel free to ask me anything ..if I can help I will
Are you going through peri-menopause? I found my hormonal migraines got significantly worse at that time and changed into cluster migraines. I would go for 3-5 days a week with head and abdominal pain and other issues. Although dead against it and having tried all of the vitamins and prescription options bar Botox, I have recently started HRT. Although only 2 months in there has been a remarkable improvement and I am starting to get my life back. I have only had the occasional migraine that responds to triptans usually during the week off the HRT. NB: I am on the oestrogen patches to release the dose evenly. I am due to visit my doctor for a follow-up soon.
Hi Kate thanks for replying. I'm not going through peri menopause. I Did find that a previously suffered hormonal migraines around the time of my period though so this may be something worth looking into! What are cluster migraines like? My headaches are really hard to pinpoint as they move around and change so much.
Sorry not classic cluster headaches more a 'cluster' of migraines, i.e. a series of migraines for a few days in a row. Each one may respond to a triptan to start with but not always. 3-5 days of this is followed by maybe 2-3 days of respite (well post migraine lethargy) followed by the same. Not fun! Previously I had only suffered from a few hormonal as the odd anomalous migraine a month.
Could well be migraine but odd it is constant with no episodic ones leading up to it unless you dismissed them as associated with this chronic headache. I am surprised the Dr gave you nothing as here an appt with Neurologist is 4 months. Can you go back and see another doctor? - at mine you see whoever is available. Another one might give you a triptan to at least try. If a triptan works then you can move forward. Over the last 6 years my Dr has tried me on 8 different drugs and different combinations - 2 that the neurologist suggested (in my 2 appointments). Only now do we think we have found one that works. Don't give up - some doctors have little experience of migraine (mine included) - but if you get one that is conmitted to finding a solution (like mine) then they can get better results than neurologist. Persist and then persist some more...
Thanks for your advice Clax. Maybe I am having migraines along with tension headaches or something, as some days they are a lot worse. I did see a few different doctors at my GP surgery but then one of them told me off for seeing different doctors! My GP has given me beta blockers and triptans whilst I wait for my neurologist appointment but I don't think they help at all. Sounds like you are making some positive progress which is good to hear! Any tips for the neurologist appointment, things they will ask etc?
Ooh dear - yes beta blockers usually tried first for preventative - they may then try epilepsy tablets - gabapentin, topiramate and sodium valproate - gabapentin worked for me for 2 years then stopped working - I am now on Valproate and they are working. Sumatriptan is very good for me but they are bad for the heart. There are different ones so others may work for you. My neurologist asked for my medical history eg asthma, tablets I take then on migraines when I get them, what my symptoms are, whether I have aura etc what has and hasnt helped. He seemed particularly interested in how many 'crystal clear' days I get a month. All the popular stuff around diet, triggers B2 magnesium etc not mentioned. Hope you get an appointment soon. 3 Aspirin (and 3 alka seltzer) have helped in some trials I read so that might be one to try yourself. All the best.
Hi Katie66 We discussed similar situation in below thread, if you have time, can you please read this? I did not want to type same thing again here to bore everyone else:
Hope this may help -please do not have high hope that neurologist is going to prescribe a medicine and your headache will be gone - it may happen but most likely it is not going to happen and your doctor should continue trying different options until a prophylaxis is found.
I do not want to be too negative, but just wanted to make you aware of this.
Thanks troy that's helpful . I know, I'm trying not to pin all my hopes on the neurologist but hopefully it might be some progress. I'm stArting to realise that there is rarely a quick fix!
I have TMJ and have a mouthguard it doesn't stop the pain but it does protect your teeth. I'm amazed you've been given a CT scan before being referred to a neurologist! I've seen a hundred neurologists but never been given a CT scan they never wanted to spend the money. Mind you I've had migraines since I was a toddler. Beta blockers were the first medication they tried with me also.
It's very hard but until it happens to you you can't believe pain can go on for this long but unfortunately for some of us it does and it can. A neurologist/headache specialist is what you need so just try and hang on til then and hopefully you can get more answers/ appropriate treatment.
I think they gave me the scan as my headaches came out of the blue and I went into A and E as it was really severe. Not sure how useful a CT scan is for headaches though! have they given you any scans or tests now? Thanks for the support
Yes I'm sure you're right they always told me 'I'd be dead by now' if my condition was something that could be picked up on a CT, like a bleed on the brain presumably! Hardly charming but probably correct. Also my mother and grandfather had headaches/migraines so it ran in the family although they didn't have them very often. As it happens i did get an MRI on my neck about a year ago, my migraines had been chronic for at least 15 years by then. It was also the pain clinic who commissioned it not my neurologist and they found 'I had a great deal of muscle spasm' which they said was caused by years of pain, they gave me 20 injections of of type of anaesthetic but it didn't make any difference sadly. Botox for my migraines has been really good though.
Migraines seem to be fairly unfathomable and I know many people who have had a sudden onset like you have had. I hope yours settle down, you tend to get bad patches but also good ones, and its then you get everything done that you're incapable of doing the rest of the time!
Hi Katie , when I read your post it was like reading about me and my symptoms. I was diagnosed with Cluster Headaches in June and was put in a strong dose of steriods and Verapamil. I'm still on Verapamil and although the side effects are terrible they are not as bad as the headaches.
I still get the symptoms of the headache (runny eye , nasal congestion) , but not the killer pain. After an episode I'm left with a dull headache which lasts all day. My neurologist is considering increasing my Verapamil.
Hoping to return to work soon.
Don't give up , there are lots of treatments that help, you just need to find the right one and good neurologist.
My son has been suffering something very similar, and we are desperate for some help, support or direction. He's 12, and the headache started 5 1/2 weeks ago. It seemed to be a virus, but despite full bloods, CT, antibiotics and attempted lumbar puncture we're no nearer an actual diagnosis. He's not been able to return to school and is just miserable. It sounds like this type of headache isn't that uncommon though, so any advice as to who to see, beyond our GP and paediatric consultant?
Hey Katie, did you ever get any further with diagnosis? I am going through the exact same at the moment and really struggling and not getting very far with my doctors. Are the headaches still persisting?
Hi Katie my name is Meri and I am 33 years old.I am from Albania. I have exactly the same headache with you, for about 3 months. Ringing in my ears , floaters in both eyes, teeth numbness, pain in different part of my head, face numbness . I have done MRI, and it was clear, I have took magnesium, flunarizine and other medicine and nothing. Please if you can help me, did you have a solution of this situation? Hope to hear from you soon.
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