Tuesday, May 22, 2012

St. John's Wort: a cautionary tale

Thursday, May 17, 2012
A few weeks ago, I spent a few hours taking photos outside. It was a bit chilly, about 7°C. When I returned home, I noticed the backs of my hands felt very prickly and tingly (like when your foot falls asleep) as well as strangely itchy under the skin. This feeling did not go away after several hours… or several days. When I washed my hands with cold water, the backs of my hands felt extremely cold, like they were covered with strong mint.
I assumed I had given myself frostbite, or rather what they call "frostnip". Over the next week, my hands continued feeling strange, tingling, prickling, or sending the occasional sharp pain along the fingertips or fingers. I went to the doctor, who thought my symptoms were odd, but didn’t think it was frost bite. She said maybe it was carpal tunnel, as that can cause numbness in the hands, but it didn’t really fit, because my symptoms got severely worse whenever my skin had contact with cold temperatures. She referred me to a nerve specialist.
In the meantime, I started to suspect I had all kinds of diseases. Poor blood circulation, vitamin B12 deficiency, parasthesia, the beginnings of MS, a stroke… every time I went outside, I started to wear heavy gloves, even though it's spring.
One time, I was out for a walk wearing a t-shirt, and noticed that the backs of my arms, as well as the skin on my face, was also tingly/prickly.
I googled my symptoms repeatedly, hoping to find someone, somewhere, that had experienced these strange symptoms. It was starting to frighten me.
Quite by accident, I stumbled across a website describing a woman who had symptoms almost identical to mind, and the culprit: St. John’s Wort.
One of the common side effects of St. John’s Wort is sensitivity to the sun. I wasn’t able to find any medical journals fully explaining this (but my search was cursory so they are probably out there) but the watered-down scientific explanation is this: the compounds in the St. John’s Wort plant, when exposed to the sun through your skin, interact with the sunlight and produce oxygen molecules. This chemical reaction destroys the myelin (protective fatty sheath) around the nerves under your skin. When myelin is destroyed, you feel the electrical activity of your nerves - this is the pins and needles, prickling, pain, itchiness, and burning.
I had started taking St. John’s Wort (in pretty high doses) about two weeks before the appearance of my symptoms. It fits: The backs of my hands, backs of my arms, and face are all areas exposed to the sun – the herb compounds interacted with the sun only in these areas, causing the pins and needles.  (I'm assuming this side effect would not happen in the winter, when our skin is not really exposed to sunlight all that much.)
I stopped taking St. John’s Wort immediately; apparently, the nerve damage is reversible and my myelin should regenerate in a couple of months. For now, I’m stuck wearing gloves in the spring/summer and looking ridiculous, although I have noticed that it's already starting to be a bit less severe.
Crazy, huh?  I never in a million years would have thought an herbal remedy could cause such damage!
I decided to share this to create a little more awareness about herbal remedies.  I know many people say that they’re “natural” and therefore can’t cause you any harm; obviously these plants have powerful compounds that can interact with our bodies either positively or negatively – just like any synthetic drug. Many people don’t even think to mention to their doctors that they’re taking herbal remedies, but this is important information for a doctor to have, especially if you’re taking other drugs. (In my case, my doctor did know, but I guess she doesn't know enough about it or it just didn't clue in for her.)
I suppose I should have seen a naturopath doctor to monitor me, as it probably would have clicked for them right away!
In the meantime, does anyone know where I can get waterproof gloves? Canoeing season is almost here but I can’t touch cold water…

Updated August 16th 2018:  Since I wrote this post 6 years ago, so many people have found it and been relieved to find the source of their strange symptoms.  Please always follow up with your doctor just to rule out any other possible reasons.  Here is a good journal article that explains the science of it better than I could: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4664572/

70 comments:

  1. THANK YOU FOR THE INFO, I WAS GOING CRAZY TRYING TO FIGURE OUT THIS FEELING IN MY HANDS AND FEET THEN I REMEMER READING ABOUT ST JOHNS AND SUN XPOSURE AND I THOUGHT IT MIGHT HAVE TO DO WITH IT, I STARTED TO GOOGLE THE PROBLEM AND FOUND LOTS OF GOOD INFO. (I WAS SCARE TO THINK I HAD SKIN CANCER OR SOMETHING SIMILAR). HOPEFULLY ITLL GO AWAY SOON SINCE ITS JUST BEEN 1 MONTH SINCE I STARTED TAKING THE SUPPLEMNT.
    THANK YOU FOR THE INFO.

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    1. You are very welcome. After I stopped taking it, the feeling started to go away somewhat within the first week, and was almost completely gone by about a month afterwards. I noticed a lot of people are finding this blog post by googling for information on this, so I'm glad I posted it! Please leave me a comment if you find me via google and find this helpful.

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    2. I have been having similar feelings in my arms, which are exposed to the sun. Started taking SJW about a month ago, and I was suspicious that it was the culprit, though I am not convinced it's due to sun exposure alone.

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  2. Thank you for posting this. I have been googling as I have a strange feeling on my face, head and arms - pins and needles and tingling skin. Realised yesterday it must be the St Johns Wort I have been taking! I can't believe there is so little information available about what it can do to your myelin and nerves. I've been so worried it was the onset of MS! Took my last dose on Saturday and hoping the reaction will be gone soon.

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    1. Hi Emma - thanks for commenting! Yes, it can be quite a scary thing to experience and I too was surprised that there was not more information on it. Something like this should be written right on the bottle! I hope you feel better soon.

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  3. Thanks so much for posting this. Its really strange because I just started taking St Johns Wort yesterday. I currently work as a gardener. I knew that St John's wort caused you to be more photo sensitive, so I've tried to avoid the sun but filtered light still hit the tops of my hands, they are burning and tingling exactly the way you have described in this blog post. Thank you so much for this post!!

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  4. really thanks for posting this! Those are so strange symptons, that I couldn't even really explain them! I wouldn't have thought so either, that herbal medicine could do that! It's just strange 'cause I take the pills already for several months and it was only after 4 beach days, that I started to feel the symptoms! Anyway... I guess I should stop to take them!

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    1. Thanks for your comment, I hope your symptoms go away soon!

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  5. Thanks for everyones info, I too have suffered these various symptoms after increasing my dose of st johns wort & recent sun exposure. Im wondering Ana did your neurologists conduct an mri? I have had an mri of my brain which has shown several abnormal spots/plaques which are likely to be indicative of MS, but im not convinced that the sjw hasnt had some impact- maybe im in denial, but just find it all very co-incidental?? I have a follow up scan in 6mths so I guess time will tell...Nevertheless, I dont believe its a safe herbal remedy as its been banned in several countries and my neurologist here in Australia believes it can cause liver damage!

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  6. Thank you so much for posting! My symptoms just started today after I used some hand sanitizer and thought it felt like that "mint-like" feeling you described. After that, a cool wind blew and the prickles on my hands and face continued. I wasn't even exposed to that much sun, but my face is sensitive now and starting to turn red. Too bad, because I really like St. John's Wort and I need to feel happier. Like another poster here, I just started taking it yesterday, too! I'm so glad you posted about the nerve damage and about these strange symptoms - thank you!!

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    1. You're very welcome! I never thought this would end up being the most popular post on my blog! But I am very glad it's helping people, it really should be written as a warning on the label so people don't end up confused and worried. I wonder if the weird symptoms don't appear in the winter since we get so little sun exposure and are usually covered up or indoor. It's not an experiment I really want to try on myself but I suspect the symptoms wouldn't really happen.

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  7. Hi Ana, Well I'm off to my doctors tomorrow after reading all these comments. Googled my problem similar to all of the above and yes I also started taking St. John's Wart 20 days ago and have noticed small itchy red bumps all over my hands and ankles. Sun exposed areas!!!!!Everyday as I am a photographer.............
    Sadly this drug is an excellent calmative and I have never slept so well. Husband has also noticed a huge change in me, more relaxed ... so!!!
    I now learn to live with the fact that I need to alter my perspective with my life and the positive effect the drug has given me.
    Thank you all for your informative comments.......... Cheers

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  8. Hi Ana. Thanks so much for your post. You described my symptoms and fears about other illnesses exactly. I have been taking St John's Wort for a long time without any problems but recently had been very stressed and decided a higher dose would help. It did help my anxiety but soon after I spent a day outside watching my son at his school sports. That night, when I washed my hands under the cold tap if felt like they were sunburnt. The backs of my hands stung with sharp pins and needles all over. Also, I have noticed that when I bump my hands, what would normally be a little bump feels extremely painful instead and the pain lasts for a minute or more. I inspect my hands expecting to find a cut or bruise but the bump really wasn't that bad.
    Thanks again for your post. I feel very relieved now.

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  9. Hi! Thank you for your post. I started taking sjw a few weeks ago. I am currently experiencing burning and tingling sensations all over my body, not just in my feet and hands. I also have barely been in the sun. Does anyone else have these symptoms? Thanks for all the information:)

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    1. I have been tingling and not exposed to the sun....all over (feet, hands, legs, face) as well as muscle twitches.....but I am not sure what it is. i have been taking a low dose of SJW extract for about a week.

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  10. I really can't thank you enough. I have been in so much pain and I did suspect the SJW because I started taking it again at a higher dose and it all started after a day of skiing where coincidentally I fell and scraped my hands on the snow and burnt them but they haven't stopped hurting for weeks. The suymptoms were so weird that i have been scared that I have fibro myalia or some other kind of nerve disease because the pain hasn't gone away but it is only when it is cold. It is so important for people to put the knowledge out there since my herbalist did not!!!! I will definately take herbs more seriously from now on and I learned my lesson, I just can't wait for the pain to go away cause it is really bad. Good luck everyone and keep spreading the work!!

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  11. Ana - thank you so much for this! I was so relieved when I came across your blog. It's so hard to describe the feeling to others, but everyone here has hit it right on the head. I decided today I felt like Edward in Twilight when the sun hits his skin and he "sparkles". Of course, I looked at my bottle of SJW and right there is says to avoid prolonged UV and sun exposure... Looking forward to my symptoms subsiding.

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  12. Interesting blog. My story is that taking St John's Wort earlier this year greatly relieved the insomnia I had suffered from for many years. I took SJW for mild depression and got this greatly appreciated and unexpected result. Night after night I was getting a refreshing nights sleep, something that I hadn't had in such a long time. And of course my mood improved greatly as a result of sleeping well, regardless of any anti-depressant qualities of SJW.

    Then I began to itch in various places. This got worse and worse and at one point my entire back was a mass of red welts from scratching. I thought it was some kind of pruritus from the winter to spring change in temperature, as I often get itching if my skin gets cold, but the severity of the itching over the whole body didn't make sense. Like you Ana I did a bit of research and found that itching is a fairly rare allergic reaction to SJW. A study of more than 8 million people using SJW found only 27 to suffer from this allergy. My luck was out on this one.

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    1. Just to add it's only just now that the itching has abated. So it's taken over a month for the symptoms to calm. I've also had pain in my upper abdomen, related to digestion, since that time and that is only slowly healing now.

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  13. I am curios if this is dose dependent. I know that some preparations are really very very potent (St. John's is the only herbal supplement that really works, huh:) I started taking it last week and have the tingling hands from pretty much the first day. I also am no longer depressed since day two of taking it (worlds fastest acting AD). But I started at a high dose, because nothing ever works for me in a small dose. I will go down to just one capsule and see what happens. Anything that works for depression will have side effects.

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  14. Thank you SO much for your blog! It is funny how I can find answers to my most bizarre questions by using the simplest terms. I have been having all these symptoms you describe: tingling, pins and needles, increased nerve sensitivity to the point of pretty intense pain (knocking my hand on a doorframe feels liked I hammered my finger), and full-body weirdness in cold water.

    I am a triathlete and kept thinking I had contracted something from an unfamiliar body of water, but could find no one else from the race complaining.

    When I googled "pins and needles cold water", which was the clearest way to describe what I felt, I got your page. After my first search attempts convincing me I had some complicated neurological injury or dermatological disease, I shouted out "It's the St. John's Wort!"

    I was taking 900mg per day and have stopped immediately. (One question: I've been taking it for a while, a month or two, and this is only a new problem... but I did increase my sun exposure within the last few weeks...is that the cause of the tingles?)

    I will stay out of the sun. I am increasing anti-oxidants like omega-3's and vitamin E...

    Any other suggestions to help the recovery?

    I will post again in a week or so with my progress. Fantastic blogging!

    Abigail

    awscromwell@gmail.com

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  15. LOL you people are silly... 300mg per day works for me and no side effects !

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    1. I think its also important to order it from a local organic farm in the states and not buy it in store... its more difficult to trust those corps with profit margins... its heaven to my nervous system right now, probably works well with anyone with nerve exhaustion (chronic fatigue) or nerve damage

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    2. Hi there Marco,

      It's a little unkind to refer to all of us who have suffered these side effects as "silly". Perhaps not everyone experiences the side effects, especially if you only take it during the winter so your skin doesn't get exposed to as much sunlight. Also, the organic versions also have the same warning that it causes sun sensitivity. But it's obvious from everyone's comments here that this a problem a lot of people experience, and it can be quite scary if you don't know the source.

      I'm glad you have not experienced it; stay out of the sun!

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  16. hi! thank you so much! i was wondering what was going on with my sensitivity to cold, hot, being lightly touched/scratched, etc. thought it was something else. now i wish i'd looked at the st. johnswort closer sooner! thank you ever so much!! :)

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  17. Tingling in my toes/feet and a "body buzz" sensation up my legs.These areas dont see sun. Its week 2 today. My mood hower, is amazing darn it! Im not ready to give it up untill it gets too uncomfortable

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    1. Tingling in my toes/feet and a "body buzz" sensation up my legs.These areas dont see sun....exact same for me plus muscle twitches and tingling in my back and face

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  18. Thanks a bunch for this post. This was a jumping off point to Google why I had this tingling in my hands.

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  19. Huh. Just found this thread when Amazoning for St. John's Wort. I ran out a couple of months ago, and was finally getting round to ordering more. I also recently had really bad pins and needles that I was beginning to worry about, but it got better. Of course, I only just made the connection thanks to your blog. Does anyone know if the pins and needles indicate permanent damage? Because I would like to start taking the SJW again.

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    1. Hello and thanks for your comment. I have no idea if it is permanent - I would strongly suggest you go to a medical doctor and ask about the safety of this product for your particular situation. If they've never heard of this side effect, ask to be referred to someone who has. Good luck!

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  20. I'm so glad you posted this because I felt crazy for what I was experiencing. I've been doubling over in pain if I even bump my hand on a corner, and I had no reason why. How long did it take for your skin to feel normal again? I live in Florida and am in the sun pretty often. Ugh, this is awful!

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    1. Hi Hannah - thanks for your comment, glad this post is still helping people! I don't remember exactly but I think after two weeks I still had some symptoms but much less, and after a month it was pretty much gone. It just got better gradually. Hope that helps!

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  21. I'm so thankful to you for this blog post! So very very thankful. I'm experiencing the same thing. Exactly. So thankful that it's not what I suspected. :)

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  22. Thank you Ana. I just stumbled upon this post while I was desperately searching to figure out what was wrong with me. Have been taking SJW for 9 months. Up'd my dosage about a month ago and started noticing increased sensitivity in my feet. Didn't put any really thought to it until this past week when I was (ironically) in St John USVI with my family. Plenty of sunshine, which I am normally not sensitive to at all.


    After about two days on vacation in the sun, I was in so much pain. My feet and hands were burning (but not sunburned), and if I went into water I felt like I was being pricked by little pins. I felt achy and tired, and sick. Was beginning to suspect all kinds of awful things until this blog, and responses, described my symptoms almost perfectly.

    I stopped SJW immediately and even after a day started feel better. I know it will take some time for the damage to go away, but at least I know what it is!

    Your cautionary tale is an important one. I should have not been so casual about starting an herbal supplement.


    Thank you so very much for sharing is Ana!

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    1. Really glad you happened to stumble upon my post and discover the reason for your symptoms! When I wrote it, I had no idea it would garner so much traffic on the internet... but, I'm glad I've been able to help a lot of people solve the mystery of their symptoms! It's my most-read post on my blog :) Hope you're feeling better!

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    2. Exactly what happened to me after being in the sun for vacation 3 days last week. The pain was so bad. I stopped the SJW right away. How long did you have to stay out of the sun? I have another vacation in 3 weeks at the lake but am nervous it will be painful again. Also my doctor thought it was my b-12 deficiency acting up and gave me another shot but this connection between the sun and sjw makes sense to me. And ive never had these symptoms with my b-12 levels.

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  23. Thank you so much for this website! I was so worried with burning/tingling hands and face... stopping sjw today ! God bless.. dan sullivan

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    1. Glad you were able to find the post and know the reason for your symptoms!

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  24. Thank you very much for sharing your story. Huge relief to make the connection with the weird symptoms when I spent the day in the sun. Thank you thank you thank you.

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  25. Thank you very much for sharing your story. Huge relief to make the connection with the weird symptoms when I spent the day in the sun. Thank you thank you thank you.

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    1. I'm really glad it helped you!

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  26. Thank you!! I have the same thing but without the sun exposure. I also have a tingling spot on my back (that has not seen the sun in a long long time!) where this all started shortly after starting SJW a couple months ago. Mystery solved!

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    1. Hi there! My understanding from what I was able to research is that the symptom does not happen unless you are exposed to the sun. If that spot on your back has not seen the sun, then it sounds likely that it could be something else... I would highly recommend going to see your doctor about it, just to be safe.

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  27. Thank you for sharing. I have the same symptoms and am looking forward to having them subside. I was concerned about fibromyalgia or ms. Hoping this will disapear with time! I would never have thought of St. John's if it wasn't for this post! I stopped taking it immediately and am dealing with stomach and mood withdrawals on top of the tingling. It was certainly helpful. I will replace it with a new practice of meditation. God bless.

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  28. Same story here! Just today I started suspecting SJW may be culprit to my tingling feeling, and now it's confirmed through your message and all other people posting. so glad to have an answer!

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  29. This has been extremely helpful, thank you! I stopped taking SJW five weeks ago but still have all these symptoms. Ana, I I dets rand yours went away after a month, but would others please tell me how long it took for the effects to subside? I know every case is different, but I am really feeling anxious not knowing how long it could take to recover. Thank you so much. I so appreciate it!

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    1. Pardon the typos. Meant to say *Ana, I understand that...*. Thanks!

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  30. So after having seen a neurologist a total six times and having had two nerve conduction tests, MRI, blood work galore, seen a rheumatoid doctor, my neurologist said that my nerves looks fine. Then he went on to ask me if I was taking any kind of herbal supplements like St. John's Wort. I said yes. I didn't even think to tell the doctor about my supplements. He believes it to be the St. John's wort.

    I have tingling and and mild burning in my hands, arms, feet, legs and face. I really wish he had with that question.

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    1. Hi John - so sorry to hear you went through so many steps in order to get diagnosed. Thank you for sharing your story.

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  32. Hi there! I'm also very glad I found this page. Your story and also the responses of others have reassured me a bit.

    I took St.Johns Wort for 2 weeks and then started to experience strange prickling and tingling feelings on the left side of my face, and my left hand.
    This started quite suddenly and initially was very noticeable; it felt like I had just had a small droplet of freezing cold water landing on my face. The sensation would only last a second before disappearing, and would happen maybe 4 or 5 times a day. At this point I decided to stop taking the SJW.
    The sensation I described above has gone away, but it has now been 4 days since I stopped the SJW, and I am continuing to have feelings of 'minty coolness' / mild tingling on the left of my face and left hand.

    I'm worried that this could actually be an initial presenting sign of Multiple Sclerosis. I have suffered from health anxiety in the past (I have convinced myself in the past I had HIV/cancer/MS, the usual diseases anxious people tend to obsess about), so I am trying to calm myself down and remind myself that having MS is unlikely, that these symptoms seem to be a fairly common side effect of SJW. So if like me you tend to have a bit of health anxiety I would say take SJW with extreme caution.

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    1. I hope you were able to go to a doctor and get this checked out!

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  33. Thank you so much for publishing your valuable experience.
    You saved my mind.
    Bless

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  34. Thank you so much for publishing your valuable experience.
    What works for me to lessen symptoms is Benadryl at low dose (Diphenhydramine), what exasperated things is smoking ( nicotine), all these tow have anticholinergic/
    cholinergic action. Paradoxically cholinergic action may be beneficial for Myelin regeneration. ( Some googled studies). Healthy fats and good nutrition seems also to help.
    Bless.

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  35. so glad I found this thread! I thought i was going crazy. I've been taking sjw for some months now for nerve damage and initially it was having an effect...I was also suffering depression and it was helping with that also. So I have been increasing the dose...only up to what it says you can take on the packet but that is double the dose. Over the last month I have increasing nerve pain to the point of being unbearable...it is now in my hands and arms as well as my feet. I fell into a very black hole of depression..I mean I was having suicidle thoughts that were escalating..I stopped sleeping and thought everyone was out to get me. I was in very bad shape. Then I stumbled across this thread. I have stopped taking them and I am now day 4 with slight relief from the depression and I am sleeping a little better. The half life is very long though and I am reading that it can take 10 days for it to be out of your system. I am hoping the nerve damage will heal as I already had damage so didn't want to make it worse. This is a dangerous herb particularly when taken in high does. Proceed with caution.

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    1. Thanks for sharing your story and I hope you follow up with a doctor regarding your depression and your other symptoms.

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  36. I'm so glad I found this post. It is such a relief to read so many identical accounts of the bizzare sensation I was experiencing. I had been taking SJW for a couple of months now and just recently upped the dosage as 4 pills a day wasn't working the same as before. A couple days after I increased my dosage I spent a day in the sun pushing my baby cousin in a stroller. My hands were exposed to the sun for at least 4 hours and I had forgotten to wear sun screen. That evening I started to feel the minty cold pins and needles on the backs of my hands which increased when exposed to cold or if I brushed the back of my hand against anything. It has been three days and now I know I must stop taking SJW and only start taking it again in the winter, when I need it the most, in lower doses. Thank you everyone for sharing your stories and symptoms. Keep posting so others can find it!

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    1. Thanks for sharing your story and adding to the stories here. I'm always surprised this particular blog post of mine gets so much traffic, but I'm happy this random thing that happened to me is helping other people figure out that it's happening to them!

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  37. I had been taking SJW for many years before these symptoms began so I did not make the connection. My previous doctor thought they were related to low estrogen after menopause. My new doctor really had no idea what might be causing the symptoms. I'm not sure if I mentioned to either that I was taking SJW. I wondered why I did not have the tingling during the winter, but it began again in the spring. So happy that I stumbled across this post. As I have been on SJW for many years, I am gradually decreasing my dose rather than just stopping it suddenly.

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    1. Glad you found the post and hope your symptoms go away soon if they haven't already!

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  38. Thank you so much for this post! I made a cup of SJW tea in the afternoon and got very sleepy. That night, the small amount of neuropathy I've had in the soles of my feet for several years (from chemo) seemed a little worse with unusual pain and burning. I didn't make the connection to SJW until I had the tea again the next afternoon and that night the symptoms became much worse, with pain and burning. The prior symptom in my feet was only a permanent slight numbness. The only other time I had a similar reaction was when I had 1 boswellia capsule, the lowest of the recommended dosage range. The reaction was similar, but much more extreme bright red and burning, not just my feet, up my lower legs, and in addition I got what seemed to be hives. Both herbs gave me a great mood lift! I'm now here googling to find out what is happening so I don't make a similar mistake. The myelin connection seems to make sense in some way. Both herbs increase gaba. Has anyone found anything else? I hope there's no additional permanent damage! I'm very worried.

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    1. I should have added that I have the same reaction in my feet to turmeric. First it was the boswellia, then the turmeric, and now SJW. I'm not a glutton for punishment, I'm just trying to find better ways to handle chronic back pain. I'm running out of things to google so I can avoid repeating the foot pain if I'm lucky enough for it to go away. I'd really appreciate any suggestions for what to search. I'm not an expert googler.

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  39. Thank you Ana you have described my symptoms EXACTLY!!! I went to a naturopath who knew I was already on antidepressants and he gave me high doses of SJW. Symptoms kicked in on day 6 and frightened the daylights out of me. I stopped immediately as I thought the naturopath was a whacko anyway. How long did it take for your symptoms to totally subside and did they lessen during that time. Thank you so much.

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    1. Heidi what are ur systoms?I was siting in the soon for couple of hours and got sunburnt that's when the nerve pain came on but my hands are still sore on

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    2. Hi Heidi, it was so many years ago so all I remember is what is already written in those post. I'd suggest following up with a doctor to make sure you're all right.

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  40. Hi everyone I took st John's wort last July I was only taken it a few weeks when I started to have burning in my arms and hands I had been siting in the sun but I live in Ireland and it wasn't very sunny.I had stoped taking the herb a couple of days prior to this a year on the systems are better but I still have burning in my hands?Everything I had read says it should go away in few months never had nerve pain in my hands before taken this.

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    1. Hi Ashlene, it sounds like you should go to a doctor to get it checked out.

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