Glaucoma, Migraine, Anxiety & Depression : My Story

[Royrace]

Hi.

First of all this post is not an advert or a recommendation. It is just my Story and an opportunity for me to share my experiences in the hope that some good will come out of the last two years. My sincere wish is that something in my story will help someone that is reading this. Whether that is directly or via a loved one, and hopefully give them a head start on the road to their recovery.

If you or somebody you love is suffering from any of, or a combination of the following ailments this may be of interest:-

Glaucoma, Migraine, Anxiety, and depression

This is my story:-

Background: I am a 51 year old male that has suffered from Migraine since a Rugby concussion when I was 12 years old. After this concussion I started to get Aura migraines and have continued to get them throughout my adult life. Some times I would have a migraine every 2 weeks other times in my life it would only be a couple of times a year. The only trigger that I ever found for certain, was Chocolate, which I haven’t eaten now for many years, and when I have, guess what? I got a migraine.

My Story :-

On three occasions between January 2020 and December 2020 I suffered what I thought might be stroke. Out of body sensation, headache, visual disturbance, de personalisation, vertigo, Confusion, slurred speach and leaning to the left. On two of these occasions I was driving so you can imagine my concerns at the time. On each occasion I went to A & E and after receiving tests including ECGs, neurological, bloods, blood pressure, and on one occasion a brain scan. The symptoms reduced Over the flowing few hours and I was eventually discharged from hospital. I was told that they were just a different type of migraine, which they referred to as atypical Migraine.

Moving on to April 2021. I went for a regular eye test and after taking the pressure test I was urgently rushed to the local eye hospital where I was diagnosed with very high pressure (45) in my left eye as a result of this I received many test and eventually prescribed the following medication to try to reduce the pressure:-

Acetazolamide tablets x4 per day

Iopodene eyedrods x3 per day

Dirzolamide x 2 per day

Mono post x 1 per day

Within 24 hours of taking the medication I fell Ill with Nausia, pins and needles / tingling all over. Lack of appetite, and severe Anxiety & depression (which I had never suffered with before in my life) over the following 10 days I lost about 14 kilos. After another emergency appointment, this time with a private Optometrist I was taken off Acetazolamide. However the symptoms that I was experiencing continued and only very slowly improved over the following 4 weeks. However The Migraines, and Anxiety & depression stayed and over time started to take over my life. I constantly felt cloudy headed, I lost my appetite and continued to lose weight. I was getting headaches / aura migraines between 2 and 5 time a week. It just seemed to be getting worse. The optometrist was excellent and after having SLT surgery for my glaucoma my eye pressure was stable (23) I would also like to point out at this point that my headaches tended to be predominantly on the left hand side of my head behind my left eye.

Time moved on and nothing seem to improve regarding my anxiety, depression and headaches / Migraines although my Glaucoma was being monitored every 6 weeks, and under relative control, but I had lost some pereferal vision in my left eye. I was then referred to a Neurologist who ordered another type of brain scan to rule out any bleeds, tumours or un ruptured aneurysms etc. the results of the brain scan came through and I was relieved to find out that nothing serious could be detected although I have some supposedly insignificant white matter at the front of my brain on the right side that the Neurologist assured me is nothing to worry about and I have probably had that since birth. Although I believe that this was probably as a result of the rugby concussion injury from when I was 12.

Whilst all of that was going on I had still been trying to get to grips with the depression and anxiety side of things. I privately attended CBT and was prescribed Sertraline (50mg per day) from my GP. Eventually I started to get my appetite back and although I remained positive I was still suffering from multiple migraines every week, a constant feeling of de personalisation and anxiety that made leaving the house to do anything a real chore mentally.

Back to my Neurologist. After the brain scan results were clear he wanted to try and get to grips with my migraines which was very welcome. After reviewing all my medication which at this point was:-

Setraline (50mg per day)

Monopost eye drops (once per day)

Azopt eye drops (twice per day)

He immediately told me that Sertraline can increase headaches and that it is an unfortunate side effect. Upon being asked if I felt they were working for the anxiety and depression I replied that I wasn’t sure but would feel cautious about stopping them just in case I got worse again. He recommended weaning off Sertraline and starting to take Mirtazapine (15mg) instead. He explained that this was a stand alone treatment for Migraine as well as an acknowledged anti depressant. I can’t precisely remember his wording or indeed I cannot say I fully understood. Other than to say he could not rule out a possibility of a connection between the Glaucoma, Migraine and depression and Anxiety. After taking Mertazapine for one day I noticed a vast improvement in my sleep. I could actually lie in in the mornings which I hadn’t been able to do since all this began, even though I was exhausted and fatigued constantly. After just a few days my anxiety and depression had literally melted away. Everyone around me, especially my wife noticed that the old Matt was back! I am now two weeks in and I am doing all the things I used to do without any depression or anxiety at all. I no longer feel de personalised or cloudy headed. I have still had a couple of aura migraines and headaches but very mild in comparison to before the Mirtazapine. I am not taking anything for granted at this stage but at this point in time this has been totally life changing! I now feel energised, up beat and I sleep like a baby!! I’m not saying that this is the answer for everyone. What goes on inside our Skull and how it all works and affects our physical and mental health is not fully understood. God knows I don’t understand it but hopefully my story will give you hope. And if reading this results in just one person benefiting from my own experience, it would all have been worth it! The answer is always out there somewhere but in modern times it seams to be a lot harder to track down. So my advice is be persistent, don’t presume every medical professional knows everything. And finally, the fact that you know your body better than anyone else, so don’t give up the fight. I still have Glaucoma, which is being monitored. I still get migraines and headaches occasionally but I have No more symptoms of depression or anxiety ! it just feels like I am alive again instead of just existing. My own psynopsis of my experience is that I was almost destroyed by Azetazolomide but have been given my life back (and my wife has her happy but occasionally annoying Husband back) thanks to Mirtazapine, with a bit of help from a very good Neurologist! If I’m totally honest I’m not 100% sure that I actually had Anxiety & depression. I had all the classic symptoms but were they physical symptoms caused by medication or something else? Either way that’s all in the past for me, I’m one of the lucky ones.

If you managed to read this to the end I hope it helps and gives someone hope of a better future!

This forum was very helpful for me with my Glaucoma journey so hopefully this is a little bit of payback.

My final words:-

Don’t give up, and fight the fight because you know what they say “Things can only get better” it took nearly 2 and a half years for me but it was worth it in the end. What a journey.

Kind regards (the old) Matt x

[callie77]

Hi MattJust read your story(twice) and want to thank you for posting it.

I suffer from anxiety and I'm awaiting a trab op so get very anxious about it but hearing your story certainly helps.

So glad you are back to your old self and enjoying life again, it gives everyone hope.

Many thanks and best wishes.

[Nyasham]

Hello Matt

Thank you for posting. So glad you are doing well. I really needed to read this as going through a bit of worry. Thank you

[Eahldt]

Thank you for sharing your experience. Everyone’s story is different but parts of everyone’s story helps someone. I hope you continue to maintain the progress you’ve made.

[muddledme]

Thank you for your story, so pleased you are feeling better now.

I agree about the importance of persistence, often hard work, but usually worthwhile.

Years ago I had undiagnosed drug induced lupus caused by antibiotics, but it took 5 or 6 years of pain before a diagnosis and a slow recovery. I had been seen repeatedly but told to take more Panadol . Often the problem seems to be that because there are so many specialists the patient is not seen holisticly and drug side effects are often belittled.

Now we are fortunate to have the internet, which I have found very helpful, and of course also the forum and Glaucoma UK, webinars etc. A bit like a jigsaw puzzle sometimes with new versions appearing with research.

Having now had so many adverse side effects to medicines I am now extremely cautious as I find medics often happy to prescribe drugs that are on my allergy list, including preservatives in eye drops .

I think this is because the system is so rushed, so it is even more important to double check ourselves.I check the prescribed medicines before leaving the pharmacy.

Hope you continue to recover after all your persistence !

[Trish_GlaucomaUK Partner]

Thank you for sharing your story Matt

[Sabina666]

Hi,thank you for sharing your story. I'm using the same drops like you, glaukoma on both eyes, diagnosed 3 years ago with eye pressure 39.I have headaches all my life, really strong headaches. When I started with eyedrops 3 yrs ago headaches was gone. But 2 months ago I had side effects from Ganfort eye drops and I stoped using them. I had a headache over a month every single day. I was not able to go with my daily routine at all. Now I'm on Monopost and Azopt and headaches are gone again. I have MRI scan in 10 days,my all team of doctors are worried because of this headaches. I hope MRI scan will be ok. Don't feel any symptoms of anxiety or depression, only suffer from headaches. Thank you once again. I'm so glad you're better now...