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Need Help: Severe Reaction to Sam-e (Went to the ER) - SAMe

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by LampLights, Aug 11, 2018.

  1. LampLights

    LampLights

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    Hi everyone,

    I need help because I went to the Emergency Room 2 times in this past week and I think it's related to taking Sam-e. Right before this happened, I was taking 400 mg of Sam-e for a bit over a week - it was a new brand of Sam-e, and I was to taking 200 mg of Sam-e for 2 months of another brand. I'm not sure if I over-methylated or overdosed on Sam-e. Or it could be something else entirely. I'm open to any suggestions or advice or referrals.

    The ER doctors took EKGs, urine tests, blood tests, X-rayed my chest... At first, they said they aren't sure what is causing it. Then they concluded that I was being emotional- that's the cause they told me. I'm very confident, very certain that it's not an emotional response. I told them about the supplements I've been taking and they ask what Sam-e was and didn't go beyond hearing that it was a supplement- they didn't investigate further on that. Instead they recommended I go to a therapist, and follow up.

    I feel very sick if I drink alcohol, so I don't drink, don't do drugs, and don't smoke; I eat healthily and I'm in my late 30s.

    My blood pressure has fluctuated and although it seems within acceptable range, my physical symptoms have made me housebound due to feeling sick everyday and prevented me from even driving- my life feels stunted right now.

    At certain points my blood pressure was 143/91 on the day I called 911 to go to the ER. The next night, I had a 94/62 reading. The next day, I had the 2nd ER visit when I had a blood pressure of 133/91 and 65 bmp. Normally, my blood pressure is at around 96/64 for a while, but I didn't have these negative symptoms back then. I use a WelchAllyn upper-arm cuff BP monitor and I've been monitoring the low BP for about a year. This is a dramatic change for my body. And it quickly happened.

    I could only sleep for a few hours a night (about 4 hours) and the whole day I'm totally wired and alert, maybe even restless. I want to sleep again but I can't seem to fall asleep; I just don't feel sleepy. Mood wise, I'm keeping calm, laughing, and engaged by watching lots of my favorite comedy series on Netflix- it helps to distract me from the symptoms and it's fun!

    But what's not fun are the other symptoms: feeling like my head is full of pressure, shortness of breath, labored breathing, very fatigued, sometimes feeling like blacking out, my neck is tight, my neck feels like someone is choking me out but I can still breath (maybe it's the blood vessels in my neck constricting and/or it's because of my resting BP, the diastolic pressure), sometimes I'm dizzy, tingling in my fingers and at its worst my toes as well, my heart feels heavy and like its working too hard even while resting, my chest feels tight, my body is slightly to moderately shaky (but not from any negative emotions bc I'm still smiling while watching my shows and still slightly shaking), sometimes my throat gets tight and I have a hard time swallowing food like I normally do, pounding inside my upper chest area, my eyesight gets slightly blurry or slightly fuzzy (I wear contact lens designed for astigmatism), my eyes feel pressure or warm, my teeth feel crowded and pressured especially the upper front teeth and oddly also it feels like when sucking on own teeth, my lips and tongue feel tingly, my hands and feet are cold but my body and neck and head are hot, can't focus like I normally can, and I keep on waking up with only 4 hours of sleep and can't nap. At first, the weird and seemingly dangerous internal physical sensations caused my bmp to spike from being nervous and anxious about all the suddenly new bodily sensations, but since the 1st ER visit, I've recognized the sensations/symptoms are not an immediate threat, and so I keep calm with comedy shows, breathing exercises, mindfulness techniques, meditation, and constantly texting with friends and family.

    Currently, I found that if I stay in my air conditioned living room at 68 degrees F and try to lounge on my couch up against the couch's arm, I can kind of tolerate these horrible symptoms. The intensity of my symptoms goes up higher as the temperature moves above 70 degrees F. Also, I noticed that if I slowly drink very cold water, my symptoms temporarily improve and feel better, especially with my head, lower neck, and chest/heart regions.

    I was taking Sam-e because I assumed I was undermethylated and had high histamine. I thought that because my seasonal respiratory allergies turned year round, and I’m highly adversely reactive and intolerant of fermented drinks and food, amongst other indicators. I’ve been trying to help myself by taking digestive enzymes when eating, and taking supplements for 4 months such as P-5-P (B6), Vit C powder, magnesium, Zinc, glutamine powder, inositol, taurine (, MSM powder, gaba, and sometimes NAC, along with Zyrtec and Benadryl everyday (I haven’t been sleepy with 3 caps of Benadryl (25 mg each) for the past 1 month). Last 3 month, I was also talking 5-HTP, and tyrosine only in the morning. Last month, irregularly taking B1 (thiamine 100mg) and niacinamide (500mg).

    The last week before my ER visit, I started taking a good amount of Alpha Lipoic Acid (thioctic acid 300 mg, sometimes 2x a day) with Biotin (330 mcg, sometimes 2x a day) , Creatine powder (around 3 grams a day), and 400 mg of that new brand and higher dose of Sam-e everyday. They were all new supplements. I noticed that I was having diarrhea for every bowel movement everyday and I couldn’t sleep much sometimes staying awake all night during the whole week- that insomnia progressively got worse. I did notice my BP sometimes was rising a little bit during that week and I was pleased, thinking maybe adding the new supplements helped the regimen. The night before my 1st ER visit, I couldn't sleep at all. And on that Monday, that's when I had to call for an ambulance right after driving my car for a few minutes in 95 degrees F weather.

    Thank you for reading my post. I'm really at my wit's end trying to solve this problem. I'm very grateful and humbled for being able to connect with a community that might be able to help me solve this challenge and where I can candidly share my struggles with you.

    The fact it was so sudden and affecting my whole body and brain makes it urgent for me to figure it out soon because so far all of my health care providers including the followups say their tests are not showing anything wrong and they can't figure it out, except thinking that it's stemming from my mind. And it's been a week now.

    Thanks again in advance! Keeping the faith.
     
  2. keepontruckin

    keepontruckin

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    I just cannot tolerate Sam-e at all (I get sick as you were) and a lot of other people seem to be sensitive to it as well. Just avoid it.
     
    LampLights likes this.
  3. NotThisGuy

    NotThisGuy Senior Member

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    so you added lipoic acid one week before your first ER visit and never took it before that date?
    Just a suggestion but maybe it is the lipoic acid that caused all of your symptoms. Since it chelates mercury you could suffer from redistribution.
    Your symptoms match that very well.

    Im sorry I'm too fatigued to go into detail now.

    I'd suggest that you post all of this in this group:
    https://groups.yahoo.com/neo/groups/frequent-dose-chelation/info

    usually they are very helpful in explaining that whole mercury, lipoic acid and chelation stuff.

    Chelation (especially the way you did it) can really burden the adrenals and lots of symptoms you mention sound like low adrenal hormones. (especially low cortisol)

    so maybe you will find some relief with this:
    https://www.amazon.com/Thorne-Research-Adrenal-Vegetarian-Capsules/dp/B000FGWDAY

    (this is probably what they will also suggest you in the chelation group)
     
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  4. Vineyard1

    Vineyard1 Senior Member

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    You may want to consider putting a hold on your alpha lipoic acid. My Naturopath told me to discontinue mine as I was experiencing much of what you describe above. She told me it is a potent antioxidant and chelator of mercury and if you are a poor detoxifier ( I am homozygous c677t) you are just redistributing the mercury causing damage to various systems (CNS, kidney etc.).
    I do not know if that is going on with you but felt compelled to mention it.
     
    LampLights and Learner1 like this.
  5. SueJohnPat

    SueJohnPat Sue

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    I am so sorry you are having such tough issues. If it is any consolation I had a period 3 years ago where my blood pressure was spiking up to 200 / 90. I though was having a stroke went to er and nothing. Then my blood pressure would be normal. When my symptoms where at my worst I had severe diarrhea. They suggested “ stress” gave me Ativan in the ER. Ugh,,,, I told then I had clonazepam at home and was not stressed. I am a pharmacist so a lot of times I would just ask my family doctor for drugs that would help symptoms .
    It is very scary though . I was scared I was having a stroke like my whole body was weirdly wired and like a had an electric shock going through me.


    If the cold helps maybe you could take a cold shower- This could possibly tamp down a possible inflammatory response. I still take ice cold showers if I am having flare ups,

    I would try to schedule a visit with your family doctor if you have a decent one. In my case my family doctor was much more help then specialist or the er. I understand though I went to the er a lot at one period . Medicare said I had to stop going.
     
    LampLights likes this.
  6. cph13

    cph13 Senior Member

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    @LampLights there's a simple way to see if it's adrenals which is a good thought @Notjustfatigue. Coconut water with salt either in the coconut water or under the tongue. C. water is high in potassium needed for adrenals along with salt. Add some vitamin C and you have what is known as "the adrenal cocktail". This balances the electrolytes. It can be taken during the course of the day when you feel fatigued. If it works....it's your adrenals. You can google this for more information.
     
    LampLights likes this.
  7. LampLights

    LampLights

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    Thank you for your replies @keepontruckin @NotThisGuy @Vineyard1 @SueJohnPat @cph13

    Since the 1st ER visit this past Monday I've stopped taking all supplements. I went to an allergy specialist doctor the following day and was placed on a low allergy diet, which is for 2 weeks. I'm hesitant to take any more or any other supplements at this point.

    Also I was googling just my symptoms and I found a website with some people who had symptoms similar to mine. I was shocked at how many people developed the same symptoms from taking Sam-e and it's not officially reported on some medical journal for the public to be aware of.

    http://www.depressionblog.com/mt/mt-comments.cgi?entry_id=27

    I might have Serotonin Syndrome now that I'm looking more into this. Probably comes with the overmethylation, idk.
     
  8. WinterWren

    WinterWren

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    Years ago I had serotonin syndrome from a very low dose of SSRIs. It can happen. I also can’t tolerate ALA anymore or anything anticholinergic like benedryl (I’ve used it my whole life for allergies but it suddenly started giving me major low acetylcholine symptoms including terrifying hallucination type episodes)... Just things to watch for. Hope your feeling better and can figure out what was causing what.
     
    LampLights likes this.
  9. LampLights

    LampLights

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    @WinterWren How did you heal your Serotonin Syndrome? I'm concerned that the healthcare providers I've seen are apathetic to what I've been experiencing and won't provide the level of care that I need to heal. The change of behavior and sudden multiple smirks after reading the 2nd ER doctor's report suggest I'm not being taken seriously.
     
  10. LampLights

    LampLights

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    @WinterWren Also this is what I posted on another thread about what the EMT:

    I’m thinking I have Serotonin Syndrome. I remember one of the EMTs saying he suspects I was having serotonin Syndrome as he was taking me to the hospital. The only thing was my body temp was normal on their thermometer but everything else fits the description. But right before that I had bags of ice from the freezer all over my bare upper body because I felt so hot, almost burning up, and and was shaking. I could only feel some relief breathing in the cold freezer air.

    The ER doctors asked about Sam-e but didn’t go into it. The EMT said that the Sam-e produces serotonin and the high amount of Benadryl I was taking was keeping the excess serotonin inside my brain and my body.

    During my 911 even this past Monday I have every symptom except hallucinations.
    https://www.wikihow.com/Treat-Serotonin-Syndrome

    Wondering if there's something safe I can do at home for now to help remove excess serotonin?
     
  11. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    Is it possible you are over-methylated?

    http://mthfr.net/methylfolate-side-effects/2012/03/01/
    Dr. Ben Lynch recommends the following:
     
  12. LampLights

    LampLights

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    @CFS_for_19_years Thank you for your response. I appreciate you highlighting Dr Ben Lynch's instructions. Would you happen to know how long Sam-e lasts in the body? And is there a way to safely remove excess serotonin at home? I was reading an article that referenced clinical journal where some research was done that animals eating a high protein diet had lower serotonin compared to those that ate a high carb diet (because of the amino acid absorption competition). Although high protein diet increases dopamine. And Sam-e increases both serotonin and dopamine.


    For this suggested treatment: I'm concerned about the flushing effect from the niacin (I have niacinamide 500 mg, does that do the same thing?) because I'm already severe negative reaction to heat (I have the AC on 68 F now) and my body already feels overly warm although my current temp runs 98.3 F. I'm constantly experiencing heart palpitations even when watching my fav shows. The heat actually precipitated the other symptoms into the intensity that warranted my ER visit.
     
  13. LampLights

    LampLights

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    Found a way to slow down new serotonin development... but it's too complicated for me to even attempt to do on my own, maybe with a doctor?

    A new method for rapidly and simultaneously decreasing serotonin and catecholamine synthesis in humans
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC257796/


    Conclusions
    Acute tryptophan/phenylalanine/tyrosine depletion may be a suitable new method for rapidly decreasing serotonin and catecholamine transmission simultaneously.
     
    Sushi likes this.
  14. zzz

    zzz Senior Member

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    @LampLights, the symptoms you have described correlate extremely well with those of serotonin syndrome, and it sounds to me like that is your main problem. It is also possible that the SAMe triggered an over-methylation response, as these symptoms overlap a lot with those of serotonin syndrome, and over-methylation tends to include high levels of serotonin. Excess serotonin clears the body in about 24 hours, so simply stopping the SAMe should be enough to get rid of the effects of serotonin syndrome. As for any over-methylation effects, the recommendations posted by @CFS_for_19_years should be helpful.
     
    Learner1 and LampLights like this.
  15. LampLights

    LampLights

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    @zzz Thank you so much for you help! I had an intuition that I had Serotonin Syndrome but still needed to figure it out. My intuition got stronger and finally came across Harvey Sternbach, MD article on it. I'm still experiencing most of my symptoms so I'd like to work with a healthcare provider to deal with the over-methylation. I wonder if a doctor can prescribe some appropriate dose of Serotonin-blocking drugs like cyproheptadine (Periactin).

    I still have most of these symptoms and it's already been almost 7 days ago that I was first admitted into the ER. I've been taking Sam-e for 2 months and the double dosage right for a week before the ER, I hope my body can get rid of it soon. And I was taking Benadryl 75mg almost every day for 5 months along with Zyrtec for 1 week before the ER visit. With 5-HTP, tryptophan (these two also increases serotonin) and all my other supplements, it might be a little longer for the excess serotonin to stop being synthesized. I just hope my excretion rate is faster than my production rate.

    https://www.mdedge.com/psychiatry/a...id-identify-treat-dangerous-drug-interactions

    The great majority of my symptoms that I still have are within this list:

    System Clinical signs and symptoms
    Autonomic: Diaphoresis, hyperthermia, hypertension, tachycardia, pupillary dilatation, nausea, diarrhea, shivering
    Neuromotor: Hyperreflexia, myoclonus, restlessness, tremor, incoordination, rigidity, clonus, teeth chattering (not chattering for me right now but my jaws are low grade shivering and clenching) , trismus, seizures
    Cognitive-behavioral: Confusion, agitation, anxiety, hypomania, insomnia, hallucinations, headache

    **A scary part was what I think might be mild hypomania because I start planning lots of things to do and I only sleep 4 hours a night yet feel like I have so so much energy and feel restless and I want to dance but really can't because I can't keep count and because my body just says no. I don't have hallucinations now but if I continue to only sleep 4 hours or less each night beyond 1 week (which is the case now), my friend said I might start getting it. My headaches feel like my whole head, face, and eyes are all pressurized and I'm being strangled yet I can breathe somewhat. The top of my scalp feels very full, maybe a side effect might be thicker fuller hair due to more blood there.

    **The ER docs became overly focused on my cognitive-behavioral symptoms and that in turned caused them to become befuddled about the whole presentations of my symptoms - the last doc said I was being emotional and that was the cause! The first doc said he just don't know and to reduce taking benadryl and the other supplements and focused on taurine and said it was a stimulant and to stop taking before bed which he thought contributed to severe insomnia and my inability to sleep at all previous night.
     
  16. LampLights

    LampLights

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    @zzz I wonder if calling for an ambulance or asking my parents to drive me to the ER tonight (it's almost midnight where I live) will be even beneficial for me. Unfortunately I have to weigh the financial costs of the ER visits with my ability to not go deeply into debt and be ruined. If it gets a lot worse then I have no choice. My trembling or shaking or shivering has gotten worse, the muscle tightness is so sore especially my neck and back. Sorry I'm getting too agitated and can only express it here.
     
  17. Gingergrrl

    Gingergrrl Senior Member

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    @LampLights Sorry to barge into the middle of your thread but wanted to add that I agree with @zzz re: this sounding a lot like serotonin syndrome and in my prior career (before I got sick), I witnessed several patients get hospitalized due to serotonin syndrome and it is important to be treated as it can be dangerous.

    I was wondering if it is possible to go back to the ER (or to a different ER?) and bring the bottles of Sam-e, Benadryl, 5-HTP, Tryptophan, etc, along with a list of the symptoms of serotonin syndrome, plus a list of the symptoms that you are currently having. I know ER doctors do NOT like the patient to come in telling them what to do and like to do their own diagnostics, so what I am suggesting is a crap-shoot, but maybe you could pose it as a question (vs. telling them what to do)? Like say, I am really concerned this could be serotonin syndrome (and doctors truly should know that it can be induced by Sam-e, 5-HTP, etc, and not just by prescription SSRI's).
     
  18. LampLights

    LampLights

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    @Gingergrrl Should I go to the ER tonight? It seems the ER doctors have written me off already, been dismissive and wrote some stuff in my ER report relating to that, and they stressed going to a primary care to do follow up. Maybe I can chance it and in the morning beg my mom’s doctor to see me for serotonin syndrome?
     
  19. LampLights

    LampLights

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    Also I live in a rural area where the doctors aren’t seeing lots of different types of symptoms and causes. And they didn’t even know what the supplements were, the 2nd ER doc asked me what Sam-e was when I was listing the supplements and I replied the best I could in my condition that it’s an amino acid supplement and that you can buy it at Whole Foods, to which he express disinterest and annoyance and didn’t take note of it moving on to other things... the fact he thought I was being emotional and that’s the cause of all of my symptoms. Makes me so upset about our healthcare system and the doctor’s ego. (The 1st doc glosses over the Sam-e and all those other supplements I mentioned as well)
     
  20. LampLights

    LampLights

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    I told my dad that I might need to go to the ER for Serotonin Syndrome and needed him to drive me because I can’t physically drive in my condition and he started yelling at me stomping around his bedroom yelling that I’m making things up and that no one gets so sick that they’ll die that easily. I calmly asked if he thinks I’m making things up and he said he refuses to answer. I rephrased my question and asked if he thinks I’m trying to seek attention and he refused. I then started yelling at him about why I would make things up when I’m so sick. And he said he went through starvation and didn’t die and so I should just go to sleep. My mom went suddenly quiet, clutched her head and left to go to the living room to pray. I so hate living in a rural place.... ignorance is everywhere.
     
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