Hi there, new to this group so thought I would share my story.
7 years ago I was diagnosed with acute angle glaucoma. Since then I've undergone 12 eye procedures, iridotomies, iridoplasties, SLT, trabeculectomies and needling.
Unfortunately I appear to have bad systemic reactions to a wide range of medications including glaucoma meds, so while I had no problems putting drops in, they would make me very ill. In fact I also get ill from the anaesthetic and dye at a check up and it takes me about 3 months to recover. Still trying to get to the bottom of this.
After my treatment for acute angles we managed to get my eye pressures down to low teens, but within 6 months they were up to mid twenties, then mid 30s and finally peaking in the 50s when I underwent emergency surgery. No idea why I developed open angle glaucoma so quickly but I can't help but think my bad reaction to the meds was related.
So then I'm at a situation post trabs, with one eye at about 15 and the other at 24. Obviously more intervention required.
Then lockdown hit. My health seemed to improve with less hospital visits - and then I had a heart attack!
My lifestyle had to change. I did a lot of research and switched to a keto diet.
I've had two checkups since and my eye pressures have been at 18 and 12. Early days, but I have to wonder if my permanent changes in what I eat have caused this. The eye docs have both been surprised and queried whether I'd massaged the pressures down before my appointment.
I'm 9 months in on this new lifestyle now. It'll be interesting to see how my eye health progresses.
Hi Supafil! Yes, Interesting to hear your experiences. Glad to hear you are feeling healthier too. I am a great believer in a holistic approach to the mind and body. I believe that the two influence each other greatly. It’ll be interesting to hear from others on the forum but I think healthy eating and healthy lifestyle can’t do any harm and may, as you say, hold back glaucoma progression too. Hope your good health continues and keep us posted. Incidentally have you ever been tested for Flammers Syndrome? It can impact on your reaction to medication and anaesthetics, I believe, amongst other symptoms. I am considering being tested as I score 10 out of 10 on the symptoms just lockdown means the nhs are so busy so I haven’t pushed it.
Thanks for your kind words. I think I have mast cell activation syndrome. I appear to tick many boxes for that but it is hard to test for. I haven't always had this but I had an horrific reaction to some antibiotics (ciprofloxacin) for a suspected UTI while on Travatan (which already wasn't agreeing with me), and things have never been right since.
MCAS can be managed by avoiding triggers and high histamine foods which seems to be working. Antihistamines supposedly help, but as someone with narrow angles, they are quite risky to take.
It may not be this, but that's my best estimate at the moment.
Hi Supafil, your post made very interesting reading ,although you have been on a very rocky journey health wise . I am very glad to see you seem to be in a much better place now due to your lifestyle overhaul. Your recent eye pressures are certainly impressive and long may they remain so. I certainly believe you are what you eat,I've been vegetarian since I was 17 and I have always maintained a healthy, active lifestyle which stood me in good stead until my glaucoma diagnosis 2 years . As my consultant informed me ",You've just been unfortunate" but that's just life.
Hi Supafil! sorry to hear about the multitude of treatments you had to undergo but glad to hear your condition seems to be in a better place. May I ask - did you switch to plant based keto or do you still have meat in your diet? thanks! and best of luck for any future treatment!
I eat meat, fish, veg and dairy. Lots of veg. I've cut out all added sugars, all grains and grain products, potatoes and all seed oils (vegetable, sunflower, rapeseed, etc). I still use olive oil but don't cook with it. No take aways and virtually no processed food.
Every week I try and ensure I tick a few boxes:
- Minimum 1 serving of oily fish
- Minimum one serving of organ meats (liver/kidneys)
I aim for a very low intake of net carbs. I don't regularly keep count, but when I do the odd check I typically come in round 20g carbs net.
Bless you, you have been through so much! I really hope that from now on your health improves and your eye pressures remain low. I’d be really interested to know if the keto way of eating continues to have such an impact on your health. Do keep sharing, take care x
Thank you for your kind words, I'll share updates. My intention is that the keto lifestyle has become a permanent change (which is easy to say when I'm only 9 months into it). If it is responsible for my eye pressure drops, then I literally cannot afford not to do it.
If you don’t mind me asking how did you go about your new eating pathway? Did you just say to yourself today I’m…… or did it take planning? I am a comfort eater and with so many worries lately regarding my eyes I’ve totally turned to food! So any advice would be great 😊 x
It was driven by my heart attack and that the medications they wanted me on I could not tolerate. It led me down a long path of research to discover why I had an artery block up and what is best for heart health.
It led me to the conclusion that we could all benefit from eating a diet closer to what that of our ancestors ate, and the ketogenic diet seemed a good compromise. The improvement in eye health was an unexpected side effect, and there does not appear to be many studies around that, but there are other people reporting similar reductions in eye pressure.
I used to be hungry all the time, but since changing my eating habits and adjusting to it, I rarely get hungry at all now. The downside is that you have to put time aside to prepare meals as there is very little processed food you can buy that don't contain forbidden ingredients.
I miss pizza and pasta, I miss bread and beer, but I see these as small compromises to make if it avoids further surgery and health issues.
Sounds great! Did you have a recipe book or just made up meals from your research. I too am constantly hungry! My blood pressure has gone up, I just know I need to make some changes! Thank you for the inspiration I’ll start researching x
I was fortunate to be quite a good cook. What I've found is my meals have become simpler. A lot of meals now consist of a piece of meat or fish with a lot of steamed or roasted veg and/or a side salad. If I want to nibble on something it's now nuts rather than crisps.
It sounds like nonsense, but once you fix your diet, your metabolism begins to correct itself and the urge to overeat and snack a lot disappears after a few weeks. Good luck.
Another aspect of diet worth researching is foods that prevent scar tissue from forming in the eye which can compromise long-term surgical outcomes. My current flatmate is in very good health all around, never gets sick. He swears by cold-pressed fruit juice every morning and steamed vegetables at night.
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