A possibly helpful supplement: citricoline

Hi All,

It seems like there’s not a ton of activity here anymore, though I do check back a lot. I found something that might possibly be helpful and wanted to share, though, in case there are still people checking this board.

First: I am more than 24 months out (I was injected in January of 2015) and, I think, mostly recovered, though I still have lingering issues. For a year or two I had excruciating joint and stomach pain. I also developed high levels of anxiety. At first it was unrelenting, now it seems like it just presents in certain situations. For instance, I have a really, really hard time flying. (I take the train when I go out west to see my family now.) I also developed some OCD symptoms which may have been latent but are really annoyingly full-blown now. Half the time after I cook dinner I worry I will get food poisoning, and I am especially afraid of fish because it often harbors botulism. Lots of pretty irrational fears, which I did not have pre-Botox. No way to prove it’s connected but hey, I’d bet money on it…

My depression has also worsened – I was really proud to have been off meds of any kind for 10+ years, and now seeing a psychiatrist and trying to figure out what to take for anxiety & depression. He thinks I’m crazy, I’m pretty sure. I tried to explain the Botox and why I am so afraid of medication but as you all know, that often doesn’t go over well. : ) I had a really discouraging visit with him on Monday – I filled my wellbutrin Rx, but asked for the non-time-release stuff because for whatever reason, those are the meds that always seem to kick my butt.

Doing research into Wellbutrin, I realized my intuitive fear of it was actually founded – it’s anticholinergic. Actually I read that any med with “anti” in the title (including antibiotics) are anticholinergic, too, which explains a lot.

I remember Anne had a great thread about cholinergic supplements a few years back, so people might want to refer back to that. I tried Huperzine A and had a really bad reaction to it, and still have a mostly full (probably expired) bottle. But, in hopes of feeling better I re-Googled cholingerics and discovered citricoline, which apparently has a very low toxicity level, raises dopamine levels, clears your head out, increases blood flow, and boosts choline, which might help a lot of us. I did a search for it on the site and didn’t find it, so thought I’d post about it. I ordered a bottle from Vitacost so I’ll try it and see if it helps, and if so let you know what happens. I know a lot of us have unpredictable reactions to supplements and meds, but wanted to put it out there in case anyone wanted to try it. Hope everyone is on the up and up – happy (almost) spring!

About starry_dynamo

Injected with 22.5 units of Botox on 1/7/15 - 20 over the brows (10 each side), 2.5 in chin. The chin was the problematic injection site, where the most damage occurred. Oddly it seems like the botox above the brows had no visible effect. Effects were immediate: anxiety, nausea, insomnia, muscle weakness in face, eye problems. Diagnosed w/ damage to optic nerve + ocular hypertension in April. Continue to have probs w/ eye twitch on left side; pain in joints; facial dents in chin; weird muscle contractions in chin; grey skin/horrible dark circles under eyes; and possibly fat atrophy in face (hard to tell, lost 10+ lbs in first week after injections due to nausea). Doing my best to avoid alcohol & sugar. Caffeine has been harder. Slowly, slowly starting to feel normal...

10 thoughts on “A possibly helpful supplement: citricoline

  1. Thanks for your post. I also noticed a lack of activity on this site. I too was injected two years ago and many people who regularly posted kept me going. Please let us know how you experience this supplement. I feel lucky that I found a doc who believed me, listens to me and has helped me get through this. It is so important. I work in the health field and he knew me before I was injected. He saw first hand what happened to my nervous system. He now counsels patients to stay away from Botox. One of the very few. I am much better , able to work etc but still have heart palps , insomnia and odd nuerolgic symptoms. But better. Anyway , thanks for posting

  2. Thanks for your comment, Sadeyedlady. I’m so happy to hear you have a doctor who believes you – what a rare thing! And what a relief that must be. I am always glad to hear when people have a supportive doctor working with them, I think it makes all the difference in the world. I wish there were more of them out there. I will let you know how it goes, for sure. At the very least might be an alternative for those who can’t tolerate Huperzine A, like me. I’m so glad to hear you’re doing much better! It can be a really incremental, back-and-forth thing I know.

    1. Thanks for coming back! So glad you’re feeling better.. I’m 20 months out and miss the lack of participation in this site.. I would check it 2 or 3 times a day in those first few months and everything about it made me feel better…
      As ridiculous as this sounds, I am feeling so much better that I have been thinking about a little bit of Botox again.. But the thought of going through side effects is keeping from it… I read in one of your post that a you had been injected again after having had your adverse reaction… I just need to know what happened… I most likely will not do it again, but I am curious about your experience…

  3. Thanks for posting starry. I haven’t visited the site for a long time — I’m into my 5th year now and can’t say I’m actually better, just different. Still dealing with bouts of exhaustion at times and the neuropathy has spread to my trunk so nerve damage apparently continues. As always, blood tests don’t show much. I had severe muscle spasms in the lower legs for I think 2 years straight and that has lessened most of the time but of course that returns along with other things with stress. I still have problems with my ankles which I suspect is lymphatic related and kinetic tape seems to be helping with swelling.

    Hope the citrocholine helps you. I get the feeling that I have severe swelling in the brain and ears are full — this may come on for a week or a month and then the toxin seems to move to another part of the body. It’s so bad at times that I’ve had blood coming out of my ears again which I assume is associated but docs have been unable to explain this (surprise).

    If anyone’s received any advice on repairing the nerve damage, I’d love to hear about it. Nothing seems to be helping and the neurologists all just want to give pain meds. Like everyone, I’m so hyper sensitive to everything, I can only take aspirin and none of them seem to have an answer for how to stop the continued damage. Any advice is appreciated.

    Wishing the very best for all,
    J

      1. So sorry, I didn’t reply sooner — I’m not on the site very often any longer and was having trouble with posting for a while. Seems to be working now. I have not yet been tested for MTHFR but it seems to be the only common thread we’ve found. I moved about 6 months ago and trying to establish new doctors and you know how overwhelming it can be having to research and re-educate docs. Hopefully within the next few months and I’ll post back when I get those results. Thanks much.

  4. birdgirl, I’m so sorry – sending lots of good energy and healing light your way. The hypersensitivity to meds/supplements/herbs is one of the worst parts of this, because there are potentially helpful antidotes out there but when everything sends the nervous system into a tailspin, it reduces the options. The unpredictability of it is hard to deal with, too. I have been trying different things in tiny doses, but even small amounts of the most innocuous stuff can often produce unpleasant symptoms – I know I’m not alone in that! I am going out of town and am a little afraid of trying citricoline till I get back and can rush to the E-room if need be if I have a horrible reaction, though I suspect if I start with small amounts it will be fine – I’ll report back once I do try it. The one thing so far that has helped me IMMENSELY is acupuncture. I know not everyone here has had good experiences with it, but I have found an amazing acupuncturist and it’s helped tons. The pattern of needles that seemed to help the most was the hormone rebalancing treatment, but I reckon it would be different for everyone. The other thing that has been really great is mediation. The timeline has been really slow, but I know there will be zero side effects. : ) And this is just 10 minutes a day so far. It just seems to really calm my whole system down, so maybe it would help others. Just the deep breaths in through the nose and out through the mouth for a few minutes seems to help. Stress definitely makes things worse, so maybe it’s just the stress reduction aspects of it. I think most people seem to do best with a variety of approaches, so maybe one more tool in the toolbox for managing symptoms.

    1. Hi Starry, My apologies for the late response — lots of trouble with getting logged in to the site and it appears to be working now. So glad that at least you’ve found something to provide some relief. I have real concerns about acupuncture because I have such widespread nerve damage and the constant feeling of pins/needles in my legs, feet, face and abdomen. The thought of actually sticking needles in my skin is frightening. When I can take walks, it helps with symptoms and mood — like meditation but can’t always do that because the nerve damage has spread to my left foot and when it’s severe, it’s painful to walk and I don’t want to aggravate it. Stress is most definitely a HUGE trigger but sometimes it attacks a day or two after the stressful event is over– makes me think that the adrenaline and/or cortisol released by stress is somehow blocking the symptoms and when it stops being released, we relapse.

      Thanks for the advice and your kind comments.
      J

      1. No worries – I am not on the site much either. I think I have replied to comments six months after the fact! : ) In any case, definitely don’t do acupuncture if it’s going to make things worse. The funny thing about all of this is how similar we all are, yet how individual as far as what helps. More and more I think the best approach for any kind of illness is more about subtraction than addition – that is, just trying to find ways of not overtaxing the body so that it can work on getting everything back in equilibrium. As I’ve been reflecting on health in general it occurred to me that pre-Botox I had a period of time where I was so healthy I didn’t even catch colds – this was a three-year run. What set that time apart was that my stress levels were waaaaaay lower and my social connections were way better. (I had a really good friend at work that I could talk/laugh/joke with, but don’t have that now and get sick twice a year at least with flu or bronchitis.) Anyway, yes, I think you are right on the money about the delay effect with the stress, and that it’s likely related to adrenaline and/or cortisol. I think I remember some people here having some luck with biofeedback, but I haven’t tried it myself. Hope you are well!

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