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Rebecca's Log
I took Accutane from September to November 2023. I woke up November 10th with intense head pressure, dizziness, nausea, disorientation, confusion, and crippling anxiety. I quit taking the Accutane then. These intense symptoms lasted 10 solid days, and the next couple of weeks after that were awful, too. I think I found out about the low vitamin A diet around 3 weeks into these symptoms.
Where I am now: Today is day number 67. What I have discovered is that I am extremely sensitive to vitamin A. I am also extremely stubborn and hardheaded. I have tested it several times in the last 6 weeks (well, not as much the last 2 weeks as I am finally accepting this is what it is), and every time I consume anything with vitamin A, I get intense head pressure, dizziness, and just an extremely unsettling, weird, heavy sensation in my prefrontal cortex, a sensation like I'm holding on for dear life but that my brain is about to stop working. And my anxiety is downright unbearable when I have these episodes. So, I avoid vitamin A to avoid these extreme episodes, but at 67 days Accutane-free, I still have a lingering headache and dizziness and noise sensitivity that are always present. I wear earplugs all the time.
I have good days and bad, both physically and emotionally. I try to be hopeful because from what I've heard, if I stick with the diet and healthy habits, my head symptoms will get better in 6-12 months. It is still early so I am trying my very best to remain hopeful.
I have no other symptoms besides headaches, migraines, head pressure, and intense anxiety. I currently have a headache, but like I said, that is lingering and always present. Luckily it's not too bad at the moment.
I will be on low vitamin A whether I get better or not because I simply can't tolerate vA at all. To be honest, I'm not even sure what is causing my symptoms or how to fix it, but I just know I have to stick with this diet. I will post here every few months for progress reports.
Thanks to Grant for his research and this forum and everyone here...
**edited for typos
Thanks for posting your log! Do you have dry eyes by any chance?
No, no dry eyes. My hands and fingers are extremely dry and crack easily. They feel like sandpaper. But that's pretty much it, I guess!
I am scared to admit this, but I am beginning to feel like what I have is not vitamin A toxicity, but rather Accutane has changed my body chemistry to where I can no longer metabolize vitamin A. Does this make any sense? I am aware my symptoms and reactions to food (especially coconut oil) are strange (and truly terrifying when it happens), but I have literally no other symptoms. I went back and checked my blood work (11/22/23), and my vitamin A levels were at 39.7 mcg/dl. Well within the normal range. But I have such horrible reactions now when I eat vitamin A foods, and do quite well on beef, chicken, rice, potatoes, beans, the barley banana muffins, and barley pancakes.
Is it possible Accutane ruined my body chemistry?? I have never heard of such. I do believe 100% that I had (and have to a lesser degree now) intracranial pressure from Accutane. I was also on doxycycline off and on for 3 years up until a few days before the Accutane. Doxycycline and other tetracyclines combined with Accutane are KNOWN to cause intracranial pressure, or idiopathic intracranial hypertension. There is absolutely no doubt in my mind that Accutane did this to me.
My question is, am I vitamin A toxic?? I saw my PCP yesterday. I told her my theory. She said it's possibly my vitamin A levels were always low, and it was normal for me. This 39.7 might be "high" for me. I don't know. I am just extremely anxious about my health and how to fix this. Will it last forever?!?
If anyone could weigh in, it would be greatly appreciated!
Hi Rebecca!
How are you doing now?
I developed severe vitamin A toxicity several years ago after eating beef/chicken liver several times a week. My first symptoms were dry eyes and strange fatigue. A fair amount of perfunctory googling, however, convinced me that dry eyes could really be a symptom of LOW vitamin A, so I stupidly decided to increase my liver consumption while trying going gluten/dairy/eggs free (to no avail). After I could no longer tolerate liver and developing gastritis, I started eating lots of carrots and pumpkins, which were supposed to be good for my stomach, only to find myself in the worst state of health I've ever been. Always brain-fogged, very ill and thin, with yellow and extremely dry skin, dandruff, the whole GI tract inflamed, feeling low thyroid and cortisol symptoms, confused, angry, with pink lips for no reason, etc.
I totally get what you describe as an "unsettling, weird, heavy sensation in my prefrontal cortex". The sick state felt like my brain was toxic, and that heavy toxicity permeated my whole body, and all I wanted was to escape that. Once I realized it was vitamin A/carotene all along, I started my low-ish A journey. I felt better after a couple days, but the ride is still very uneven.
I've always wondered why some people could take accutane and retinol pills and be just fine while others ended up feeling completely miserable. On this forum, I suggested that maybe it was down to one's genetics but a reply I received was that it's too easy to blame genetics and ignore your poor state of health in general and liver's detox ability in particular to begin with. However, how then could we explain that lots of overweight people with shitty diets could handle high doses of vit A and some fit and healthy folks experience toxicity from pretty low doses? One explanation could be that as a fat-soluble vitamin, vit A is distributed more readily in a fat person's body and doesn't cause the same toxic state because less is present in the blood. I'm not really sure it's the full and complete reason.
So, my advice from experience would be:
- obviously go low A; However, I should warn you: too strict a diet will screw you up. Ideally, you must try to restrict vit A comsumption (not making it close to zero, which is almost impossible anyway) and get an abundance of other nutrients. Get vitamin C from apples, kiws, bananas or potatoes. Many leafy greens are extremely high in carotene, by the way. Get folate from other food sources;
- support toxic bile removal from your body. Just try tying it to fiber for elimination. For some people, beans work best, I prefer mushrooms, others like activated charcoal. I wouldn't go mad with the latter as it can seemigly bind to healhy elements in the GI tract as well, not just toxic compounds;
- get enough protein and zinc. Those are required for the production of retinol-binding protein;
- try some fermented products for gut health. Don't eat too late or too early. Allow the digestive system to rest for a while;
- check your vitamin D and get it within the normal range if needed. People have had quite different experiences with vitamin D, but it's always best not to miss out on any vital nutrient (vit D is more of a hormone). Some swear by it regarding vitamin A detox. Eat more calcium and vitamin K. Take magesium along with it.
At the moment, vitamin A tends to have a cumulative effect on me. I can eat some eggs and cheese one day and feel fine. Next day, the same amount will cause symptoms. Day after that, it'll go downhill.
I look forward to your reply and wish you all the best in advance.
(not an accutane-injured person)
Head pressure was one of my problems and it still creeps up now and then. It does help to move the face and head muscles around, wiggle your ears, make faces, yawn, wiggle your jaw, do anything you can think of. A migrainer once told me about this. I think possibly other people use lymphatic massage to get things moving.
I look at the back of my front two teeth and they are still yellow back there. To me, they are symbolic of how VA has gotten so far into my tissues (and especially in the head). I do think the yellowness back there is LESS but I wonder if I will take some of that yellow to the grave.
I'm currently really "into" the tenets of Dr O'Mara and I think it is fascinating how the head and face of people who follow his tenets... totally change. I think he has found another way into the vicious cycle and that his method helps people detox (even though he doesn't seem to talk about VA). I actually haven't read much of his work, but have just glommed onto his tenets which I've seen outlined. I'm not actually in the market for a new guru as they all get something wrong, LOL. As Jessica has said this week, lets not fool ourselves, VA isn't the only toxin out there. I suppose that Dr O'Mara's tenets (none of which are surprising) just get people detoxing which is all for the best.
This road is bumpy and long.
@viktor thank you for your reply! Sometimes I feel I panic a little too much (I know I've asked some of these questions before)... My anxiety was especially bad a few weeks ago, but I am feeling better with that. I guess I get panicked because I want a doctor to tell me what is wrong and what can be done about it. I want them to tell me exactly when I will be back to normal, and I am sad that I know it will never be normal again...
That being said, I have really good days. I have even had moments where I felt "normal"! But today I have a headache. Probably my own fault for eating too much sugar and carbs over the weekend. (I did a lot of baking over the weekend- I find it's therapeutic for me, just not therapeutic to eat so much sugar in 2 days lol). I will recover from this and won't do that again. For a while a least ha!
I also noticed that some people I would consider not as "healthy" as me or who were overweight handled the Accutane better than some of us. I am tall and lean and strong. I just couldn't understand why this happened to me. I'm also older than the typical Accutane patient, so perhaps I have more vitamin A in storage than someone say, 18 or 20...
Yes, my journey is uneven. Overall I have to say it is much better consistently than it was the first 2 months, but it seems like the last few weeks have just leveled out. I still have some "bad days" or "bad hours" in a good day. But I haven't had a really bad episode in a long time (I guess avoiding vA at least does that for me, so hey, I'll take it!).
Thank you for the the tips. I still work to expand my diet. I need to get back on the beans though. I guess I'm having more problems with my digestive track than I wanted to admit. I chalked it up to my unsteady, drastically changed diet at first, but even eating high fiber foods, I still struggle going regularly. And I had painful stomach cramping yesterday that lasted for hours. I can't seem to get back on track and am realizing this may be more of a problem than I realized. I found a non-vitamin A almond milk yogurt that I've just started eating, so I'm going to try to eat yogurt every day to see if that helps.
Funny you say that, but I think vA has a cumulative effect on me as well! Sometimes I can eat that tablespoon of sour cream, but if I try "cheating" a few days in a row, it gets to me. Also probably what is wrong with me right now.
How long have you been on the low vA diet?? I'm so sorry this happened to you as well. The head pressure stuff is a nightmare!
@lil-chick thank you for your input! (I always quietly enjoy your take on things! Enjoy reading your posts)
Thank you, I will take any little tips I can get (I am moving my face around as I type this lol!). It certainly won't hurt. I've been massaging my lymph nodes, but maybe I need to google it to make sure I'm doing it correctly.
I keep seeing that name pop up (Dr. O'Mara). I might have to look into him. I might be avoiding vitamin A, but I definitely need to do a better job at detoxing (this weekend I wrecked it by eating a lot of sweets and not being on an eating schedule). This would not have affected the old me, but the new me can't handle it. My head has some pressure today and I do have a headache, but it's not unbearable... I guess I got comfortable with eating all these carbs I was avoiding at first, I just went crazy with the breads, pastas, and sweets! It can't be good for detox. I do get a little worried because it seems I should avoid tyramine on top of vitamin A, and since I've been on here, I've also learned about oxalates! It gets a little intimidating trying to find the perfect diet for me! I guess I'll make adjustments as needed...
The road is definitely bumpy and long!! It has not been linear lol I have to say it is better than it was! But it's been a very up and down!
Here is my interpretation of Dr O'Mara's tenets: no junk food, sprint-like exercise, no alcohol, fix your sleep and get more, probiotic foods, don't be constantly eating, reduce stress.
Quote from Rebecca3 on February 5, 2024, 9:51 am@viktor thank you for your reply! Sometimes I feel I panic a little too much (I know I've asked some of these questions before)... My anxiety was especially bad a few weeks ago, but I am feeling better with that. I guess I get panicked because I want a doctor to tell me what is wrong and what can be done about it. I want them to tell me exactly when I will be back to normal, and I am sad that I know it will never be normal again...
That being said, I have really good days. I have even had moments where I felt "normal"! But today I have a headache. Probably my own fault for eating too much sugar and carbs over the weekend. (I did a lot of baking over the weekend- I find it's therapeutic for me, just not therapeutic to eat so much sugar in 2 days lol). I will recover from this and won't do that again. For a while a least ha!
I also noticed that some people I would consider not as "healthy" as me or who were overweight handled the Accutane better than some of us. I am tall and lean and strong. I just couldn't understand why this happened to me. I'm also older than the typical Accutane patient, so perhaps I have more vitamin A in storage than someone say, 18 or 20...
Yes, my journey is uneven. Overall I have to say it is much better consistently than it was the first 2 months, but it seems like the last few weeks have just leveled out. I still have some "bad days" or "bad hours" in a good day. But I haven't had a really bad episode in a long time (I guess avoiding vA at least does that for me, so hey, I'll take it!).
Thank you for the the tips. I still work to expand my diet. I need to get back on the beans though. I guess I'm having more problems with my digestive track than I wanted to admit. I chalked it up to my unsteady, drastically changed diet at first, but even eating high fiber foods, I still struggle going regularly. And I had painful stomach cramping yesterday that lasted for hours. I can't seem to get back on track and am realizing this may be more of a problem than I realized. I found a non-vitamin A almond milk yogurt that I've just started eating, so I'm going to try to eat yogurt every day to see if that helps.
Funny you say that, but I think vA has a cumulative effect on me as well! Sometimes I can eat that tablespoon of sour cream, but if I try "cheating" a few days in a row, it gets to me. Also probably what is wrong with me right now.
How long have you been on the low vA diet?? I'm so sorry this happened to you as well. The head pressure stuff is a nightmare!
Hi! Thank you for your reply!
I have been avoiding extremely high-retinol foods (liver, cod liver) for about 4 years and mostly high-carotene foods for a shorter time period. I don't plan on eating livers again in any foreseeable future. I do sometimes have a persimmon (very orange in color!) but not too often. I eat kiwis for vit C, banana milkshakes for other nutrients, pasta, some lentils, chicken, some eggs here and there, bread and other stuff. Cheese eaten more than 2-3 days in a row becomes problematic, as do large quantities of butter.
However, I want to emphasize the following as those have been the most beneficial steps in my experience:
- pay attention to gut health - let the migration motor complex do its job. Your stomach should growl between meals, it's a beneficial process and doesn't mean you should eat straight away. Don't eat too close to bedtime and immeditely after waking up. Move a little bit before a meal, it will shaken up the bile. Eat fermented products, such as sauerkraut and fermented dairy. Not too much, of course. Test your tolerance first.
- eat something to remove toxic bile from the intestines. Beans are great, mushrooms are awesome, charcoal is probably fine in moderation, not as a life-long solution.
- eat a varied diet. If you can tolerate some fruit or vegetable, just add it to your menu. You don't have to eat the same healthy foods every day. You need protein and zinc from red meat.
- test your vitamin D levels. Most people living without too much sun exposure and not taking supplements will have blood vitamin D of 50 nmol/L (20 ng/mL) or lower, which is inadequate. 50 ng/ml or 125 nmol/L is the target number. There's been ample research on vitamin D deficiency being a factor in developing vitamin A toxicity. Numerous anecdotal experiences on forums like Ray Peat's confirm the essential role of vitamin D in treating toxic levels of vit A. There's no point in addressing vitamin A toxicity without paying close attention to vitamin D. It is to be taken with magnesium. Calcium is essential to the whole picture but it should be obtained from diet (non- or low-fat dairy being the best sourse). Vitamin K2 is needed but many people react badly to supplements. If you can at least eat cheese from time to time, do it. Get your level to 50 ng/ml (125 nmol/L). Whether a higher level is required is debatable (it's probably not).