Hi all, I’ll attempt to keep this brief and straight to the point. I’m a 23 year old female. Roughly 3 months ago I woke up with a chronic headache, and it hasn’t ever gone away. It is every single day, and doesn’t end - every second, minute, hour - 24/7. My right eye has blurred slightly, there is colour desaturation in my left eye, I get flashes of light (it goes black) countless times a day, alongside nausea, dizziness, eye floaters, and occasional forgetfulness.
Additionally I have never-ending tinnitus with a whooshing motion when I move my head. No pain medication touches it. It can range in intensity and can be in different parts of my head, but always both sides. It typically sits at a 7 on a 1-10 scale. I had my eyes checked, and had swelling of the optic nerve and ocular hypertension. I was sent to an eye specialist, who then referred me through rapid access to the best eye specialist in Kent. At this point, I have had the words Papilledema & Intracranial Hypertension and even a silent stroke thrown at me. After countless eye tests & exams, it shows that there is only minimal swelling of the optic nerve, suggesting there shouldn’t/isn’t any pressure surrounding my brain. No bloods, MRI, lumbar puncture or CT scan have yet been performed. I have now been referred to neurology.
I was sent to A&E by my first eye specialist due to how debilitating the headaches and eye pain had become. But due to a slight increase in temperature (and 3 negative covid tests) I was told nothing could be done until they tested me for covid, and then put me onto a covid ward (I have severe asthma & my mum is on chemotherapy) - the last place I’d ever want to be, so decided to self discharge and not be seen.
It’s been a tiresome battle trying to get to the bottom of this, and I feel so incredibly defeated and dismissed. I’m at a complete loss as to what I can do. A neurology referral can take up to a year due to COVID, and I cannot get this pain under control. I have to keep all the blinds closed, as bright light hurts. This constant pain has stripped me of my personality, I spend so much time in bed because doing the simplest task just hurts.
I have been prescribed amitriptyline as a baseline treatment for the meantime, but this hasn’t changed a thing.
Any suggestions would be so greatly appreciated. Thank you all.
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I am sorry that you are going through all of this. No one should be in this much pain. A few thoughts..
1. Have you seen a Neuro-ophthalmology? They are Specialist that look at brain based issues.
2. Have you seen a Migraine Specialist, they are MD's who only see people with migraines
3. Have you had an IV with a combination of anti-Nausea medication, anti- inflammatories and migraine drugs? This has really helped me. But I have been able to manage at home with supplements and injections of Imitrix.
If these are really migraines it is very hard to stop it when it is full blown. But here is some advice: never skip a protein filled meal, always drink lots of water. Make sure you are sleep on a regular schedule, peppermint tea ( hot) helps a lot, ice or heat on neck if you feel pain and hot showers help.
If they are serious about the migraine diagnosis then start supplements asap.
I have really learned a lot from the Podcast " heads up .
Thank you for your reply Onthemove1971. I have had none of the above, apart from seeing to eye specialists and 2 GP’s. I have had another referral to neurology at a different hospital now, however again - this could take 6 months to a year.
Thank you for your suggestions, I shall definitely incorporate them into my daily routine, thank you again.
The Podcast- "Heads Up" is recorded by 2 female Migraine Specialists, I highly recommend you start there. The have amazing shows with special guess. I can say this is the single best thing I have done..I am also waiting on a sleep study to rule out sleep concerns.
I hope you can get out of this cycle and learn how to prevent them in the future.
Hello writersblock. I'm very sorry to read what you're going through. From what you're saying, it sounds very much that no one has exercise any basic common sense and try to gain an overall picture of what is happening with you. Is there any way you could go private? I believe that you won't get very far with the NHS right now and if they have decided that your life is not in danger, and that your 'only' problem is pain they won't bother speeding up things for you.
It doesn't sound that anyone has checked your neck???? Everything you describe could be the symptoms of many conditions, including cervicogenic headaches. However, the NHS doesn't believe in cervicogenic headaches and I had to go private to finally get someone to actually touch my neck and give me the diagnosis.
They've given you Amitriptyline, which is what they give when they don't know what is going on and it is a very cheap pill for them.
Sorry, I might sound negative but it makes me so angry when I read your story and nobody seems to be taking ownership of your care.
You're saying that your mum is on chemotherapy right now and I wonder if you have considered that the stress you're going through because of this could partly explain your headaches? Ongoing stress can do very nasty things to you.
Thank you for your reply Chleo11. It truly does feel that way, and yes private is definitely an option I am considering, definitely. No, my neck hasn’t been seen at all. I don’t really feel much pain in my neck however, maybe some stiffness in the mornings, but that’s about it.
My mum has been on chemotherapy for quite a while now. It isn’t for cancer, but chronic uncontrollable lupus. Life has been extremely stressful, but it was way before 3 months ago when the headache started 😔 I spoke to the GP regarding stress, and her thoughts about that - but she (at the time) was more focused on intracranial pressure without any ocular problems rather than stress. She noted I have very high blood pressure & tachycardia, but that was most likely because I was in a hospital setting, rather than it being an issue 🤷🏼♀️
I might suggest looking into the Stanton Migraine Protocol. Google that and it'll bring you to Dr STanton's book and there's also a free Facebook group that you can join and start asking questions and getting advice/answers immediately. They are a wonderful resource and experts on all types of headaches and migraines. Good luck!
I’m so sorry you’re going through this and that you haven’t been able to get the medical care you need. Your description definitely sounds like chronic migraine with aura, including the forgetfulness (can come with or without pain and brain fog for many of us). Unfortunately, some of the side effects of amitriptyline can prolong or provoke migraine. If it’s not helping you, please be sure to write everything down (side effects/changes) and tell them so that they can try something else. Did you have migraines when you were younger, or was the onset of this one your first experience with it? Has anyone ordered any panels yet to check all of your levels (vitamin deficiencies like B12 & D, CBC, etc.) I had to wait 3 months to see my neurologist after my diagnosis of hemiplegic migraine (pre-pandemic). My best advice for the wait time is to keep a journal exclusive to your migraines- writing everything down daily (aura symptoms, anything new, changes you tried, anything that triggered the pain to worsen or anything that gave relief), and keep a list of questions. Write down your pain level everyday. If you menstruate, you may want to note your cycle also. My doc asked about my cycles at my 1st appointment and I have a 30+ year history of menstrual migraines in addition to the others, so it might come in handy even if yours aren’t hormone triggered. I had a bad migraine and terrible brain fog at my first appointment, so my notes were a lifesaver. The other thing I did while waiting was an elimination diet (I used The Migraine Relief Diet by Tara Spencer initially and have since switched to autoimmune protocol, in case it helps) and a product detox/switch to stuff that is migraine- friendly. I knew that stuff wasn’t the main reason everything was happening but I did find a lot of triggers and was able to give myself a bit of non-medicinal relief through those changes. Getting relief was the immediate goal but preventing them from happening has been life changing for me. Trying to find triggers and noting changes definitely helped me keep my sanity while I waited for that appointment- especially since I was in constant pain and partially paralyzed. I kept the journal going while treatment started because my doc needed migraine details for what happened in between appointments, and I wanted them to know specifically why the first seven prescriptions they tried didn’t help (often making me worse). I hope you’re able to find a way to bring the pain level down to something manageable while you’re waiting for treatment. If you think any of my experiences might help and have more questions, please let me know.
I’ve had headaches before but absolutely nothing like this. It came out of nowhere and just hasn’t left since. I’ve kept a diary for 2 months now - would chronic migraine with aura never leave for 3 months and present those symptoms? Nope nothing, which I find really bizarre. I have hypothyroidism, which I thought may be contributing but my levels seem to be ok for now. I’m on the contraceptive pill, which has been ruled out as a cause, so thankfully haven’t menstruated for a while.
That sounds horrendous, I’m so sorry you have been through that. I have done an elimination diet, but I have such a strict and small diet due to being vegetarian (6 years now), and severe oral allergy syndrome, so I’m already extremely limited sadly. Thank you so much for your response!
Yes, a migraine can definitely last for 3+ months without ceasing, which is frustrating, for sure. I’ve had vestibular migraines go that long, have a friend whose migraine caused by a spine issue lasted 7 months with no break (until she had surgery) and one of my closest friends had a migraine nonstop for nearly a year before they diagnosed a brain tumor as the cause. Don’t be surprised if the neurologist goes a different route with thoughts on the BC pill than your GP, or still wants you to do an elimination diet. Nightshade veggies are a problem for many migrainers (I’m okay with tomatoes but can’t do eggplant or onion). Curious if you are strictly hypothyroid or have hashi’s? Hoping that with that challenge, your allergies and the vegetarian diet (props to you on that- I used to be but cannot be now for health reasons) that they’re checking your B12, too. I’ve got pernicious anemia, so I get tested every 3-4 months. My B12 & iron levels definitely impact my migraines. It’s not an expensive test here in the US, and wonder if maybe ruling out some deficiencies would be an affordable step while you wait to be seen... Kudos on keeping that journal! Be sure to take that with you and your list of questions, when you go to the doc! A side note to all this- a headache and a migraine aren’t the same thing. A headache is basically a symptom of a migraine, along with many others you’re also describing that you have BUT it could be something totally different. There’s a YouTube channel called Institute of Human Anatomy that did a video on migraine (What Are Migraines) that might be helpful. I know it’ll be awhile before you’re seen, but I hope you come back an update us!
Check out journal speak with Nicole Sachs here on Facebook, of pain free you by Dan buglio, the books unlearn your pain by Howard shubiner , the great pain deception by Steve ozanich or any of the books by dr John sarno.
There’s a documentary you can watch called all the rage but a better/newer one was just released called this might
I’ve had a constant headache with tinnitus since may 5th 2011, not a single second not in pain.
I was getting better using the stuff I just mentioned, I tried all the drugs, I tried the nerve blocks, I spent a year getting Botox injections I haven’t tried any of the cgrp drugs but none of that stuff worked for me, having been bed bound for years I am now a postman in London doing stuff I never thought possible.
I must admit right now I feel shit and am in pain, but whilst I was using a mindbody medicine approach to treating myself I got better.
It cost me nothing, just required a pen and paper, saying that my friend bought me the unlearn your pain book which wasn’t cheap but you get my point.
Sorry to hear what you are going through :-(. You didn't elaborate on the Amitriptyline but if I might offer 1 piece of advice it is to stick with it even though you are not seeing any benefits yet. I find all too often, patients are prescribed Ami without fully being told what to expect, I have also seen from reading numerous messages on these forums over the years, that the Doc starts patients on a dose that is too high and immediately gives them additional symptoms such as dizziness which may lead to nausea. IF you were started on more than 10mg a day it was probably too high. It takes a good while for the body to adapt to this medication and you should remain on 10mg for at least a week or 2 until the dizziness relents, then titrate up by 5mg. By doing this slowly, I was able to get to a dose of 75mg daily (it took months) and then I finally saw good relief. I was without the chronic daily headache for over a year. I've had headaches again this week, but isn't the world news such doom and gloom, it's no surprise and I'm trying not to dwell on it and think too far forward. I really hope you get relief soon, would it be out of the question to pay to visit a Specialist Headache Clinic or Neurologist? x
I am sorry to hear about your pain. My daughter has suffered 2 bouts of chronic daily migraine and is just coming out of this second bout which lasted for 2 months. She wasn't being listened to by doctors in the UK when she continually asked whether her preventative medication- Topiramate - should be changed. It was a new medication and she was seeing no results at all after 6 weeks plus. She came to Spain where I live and we saw a neurologist privately on the same day of making the appointment. She was taken off the Topiramate immediately - by reducing the dose over time, put on a tablet called Sibellium 2x25mg tabs and seen again in 2 weeks. She had an MRI on the same day of making the appointment and results the next day - (195 euros). With the new preventative medication, there had been some mild improvement but she still had daily migraines. Propanolol was then added - 80mg per day. We started osteopathy and she has had 1 session per week for 4 weeks. She is now having 'normal' days. We have found a tablet called Saridon which contains 50mg of caffeine, paracetamol and another analgesic which is effective as pain relief with zero side effects. The dosage of medication is higher in Spain with some drugs. She takes 2 Saridon, 600mg inuprofen plus 300mg of caffeine which I know is a lot but it has got her out of the cycle which we wondered when it would ever end. Has your GP considered adding a second preventative tablet to your treatment? I hope this gives you some hope and I hope you get the treatment you need. Keep pestering the GP.
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