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

[Hazeleyes99]

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.

I am really sorry you are not getting support you need. The unampathetic father thing is a constant theme I read here in the forums.

Have you tried taking a small dose of niacin? Do not take the 500mg though, the intense flush would probably add to your anxiety. Try a tenth of a dose and slowly titrate up if it starts to help. I take 250mg when wired and feeling overmethylated, so I think it could help you.

 

[LampLights]

I am really sorry you are not getting support you need. The unampathetic father thing is a constant theme I read here in the forums.

Have you tried taking a small dose of niacin? Do not take the 500mg, and not on an empty stomach, break the pill up to tenths (50mg), and take one with a small bit of food, like a bannana. And maybe titrate up if it starts to help. Like the other poster said, if it mops up methylation and sam-e it might help you, and in any case, I use it when I am feeling wired and it always helps make me feel normal and calm. If you take too much you will get flushed and feel hotter on your skin, but it is temporary, and since you feel already pretty bad it would be best to avoid it.

Try just 50mg, and just try to relax. There is probably an anxiety component to the way you feel, I am not discounting your concerns, and the doctors do seem somewhat ignorant, but you should rest assured after being checked thouroughly, the likelyhood of something being critically and acutely wrong with you is probably low. If you are ramped up from weeks of sam-e, it will probably take more than a few days to return to baseline. You are probably on your way to getting better by now.

@Hazeleyes99 Thanks for your empathy; I truly appreciate your kind words. Can I use niacinamide? It provides niacin but seems like a different molecule. It’s all I have. If it’s good then I’ll take a little just to help out with some rice puffs.

 

[Hazeleyes99]

@Hazeleyes99 Thanks for your empathy; I truly appreciate your kind words. Can I use niacinamide? It provides niacin but seems like a different molecule. It’s all I have. If it’s good then I’ll take a little just to help out with some rice puffs.

I edited my post for simplicity but you got to it first, no matter though.
https://www.ncbi.nlm.nih.gov/pubmed/23426511

That says nicotinamide actually increases plasma serotonin. I did not feel right making the reccomndation and probably shouldnt have before researching at least a little. I do not know if it would help you, it might be too risky and even pointless. I am sorry for not knowing more, but will look around . Do you feel as bad still? Try to disconnect your emotional state to your actual physical sensations.


I think a normal dose of niacin, whatever form you have, could help if you are deficient, and the article seems to imply an overdose of it would increase serotonin. I do not know enough to say for sure you should take it or not. The body does have complex feedback mechanisms and U shaped curves to dosages does exist. This post may help
https://forums.phoenixrising.me/index.php?threads/the-myths-of-overmethylation.42271/

I also read you were already taking niacinamide before. So in the end you are probably not deficient. I am really not helping much, and I do not want to make any reccomendation as I am just guessing what your issues are.

I hope you feel better soon, and I think you probably will. Have you considered there is actually a big anxiety component prolonging your symptoms? You stopped taking whatever triggered these issues, and you will really likely start feeling better soon.

 

[LampLights]

I edited my post for simplicity but you got to it first, no matter though.
https://www.ncbi.nlm.nih.gov/pubmed/23426511

That says nicotinamide actually increases plasma serotonin. I did not feel right making the reccomndation and probably shouldnt have before researching at least a little. I do not know if it would help you, it might be too risky and even pointless. I am sorry for not knowing more, but will look around . Do you feel as bad still? Try to disconnect your emotional state to your actual physical sensations.

@Hazeleyes99 Wow thanks for the quick response. I read through the report and noticed the compound was nicotinamide that causes increase in plasma serotonin. I wonder if that’s similar to niacinamide and if niacinamide increases serotonin as well. Also, I was taking niacinamide very irregularly, sometimes I did for a week and then I’ll stop for the rest of the month; it was inconsistent.

 

[Hazeleyes99]

And btw, 130/90 BP is really not that bad as a transient thing. I actually have had serotonin syndrome once before, had a full blown i am going to die panic attack while driving, it was one of the most horiffic moments of my life, and it took some days, at least a week to feel right after. If thats any consolation. Maybe really consider your reaction is partly actually caused by what you took, but also, partly your own emotional response. Your home life sounds kind of stressful, it makes sense dealing with chronic health issues etc can make you prone to feeling so bad.

 

[zzz]

@LampLights, I typed my last message through a bit of brain fog, so I missed some important points from what you said. What I said in my post was correct as far as it went, but based on your whole story, I need to say more.

The first time through, I didn't catch that you had been on 5-HTP in addition to the SAMe. Serotonin syndrome almost always occurs when taking two or more different serotonergic drugs, and I thought you were taking only the SAMe. Add in the 5-HTP and the timing of your symptoms, and I can't see how what you're experiencing could be anything other than serotonin syndrome.

Normally, as I said, excess serotonin clears the body within 24 hours, and for that reason, serotonin syndrome usually subsides on its own within 24 hours once you've stopped the offending medications. But that's not always the case- sometimes it can take weeks to subside. Your situation is clearly taking a lot longer, and due to the severity and dangers of serotonin syndrome, and particularly your case, it's important to do something now. As @Gingergrrl noted, serotonin syndrome can be quite dangerous, and if severe cases aren't treated, it can even be fatal. I find it very concerning that your symptoms are continuing to be so severe even after stopping the serotonergic medications. So what to do? From the Mayo Clinic Web site:

When to see a doctor

If you suspect you might have serotonin syndrome after starting a new drug or increasing the dose of a drug you're already taking, call your doctor right away or go to the emergency room. If you have severe or rapidly worsening symptoms, seek emergency treatment immediately.

And under the Treatment section:

Treatment

Treatment of serotonin syndrome depends on the severity of your symptoms.

• If your symptoms are minor, a visit to the doctor and stopping the medication causing the problem may be enough.
• If you have symptoms that concern your doctor, you may need to go to the hospital. Your doctor may have you stay in the hospital for several hours to make sure your symptoms are improving.
• If you have severe serotonin syndrome, you'll need intensive treatment in a hospital.

It sounds to me like you have severe serotonin syndrome. So yes, I think you need to go to the ER, despite your previous experience. I think @Gingergrrl had some good suggestions:

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)?

It would be best if you could call the ER before you leave, talk to a doctor or nurse, tell them that you think you have severe serotonin syndrome, and verify that they would be able to treat that and would be willing to evaluate that possibility in your case. If so, get the name of the person you talk to. Then get yourself to the ER as quickly as possible. In addition to @Gingergrrl's suggest, I would suggest printing out the Mayo Clinic article that I mentioned; something from the Mayo Clinic may make an impression on the doctors. To get to the ER, an ambulance isn't necessary if you can get someone to give you a ride without delay.

I wonder if that’s similar to niacinamide and if niacinamide increases serotonin as well.

It does. Niacinamide would make your symptoms worse.

ETA: The one temporary treatment you could do right now would be a small amount of benzodiazepines, if you have any (e.g., Valium, Ativan, Klonopin). But this is only a temporary measure to keep things somewhat under control until you can get to the ER. And due to the potency of benzodiazepines, you should check either with your doctor or the ER personnel by phone before taking them.

 

[Hazeleyes99]

I gave advice I really should not have in this thread, @zzz posted a much more helpful post. I hope lamplighter gets help they need and feels better soon.
I really wish your parents were more helpful, it makes no sense for your father to treat you this way, but i have been there. I used to be scared of telling my dad when i needed to go to hospital because of how mad he got. I really am sorry you have to deal with this crap on top of your health issues. Best wishes. If you can get into see a clinic doctor asap over the ER, you might have a better go of it.

 

[LampLights]

And btw, 130/90 BP is really not that bad as a transient thing. I actually have had serotonin syndrome once before, had a full blown i am going to die panic attwck while driving, it was one of the most horiffic moments of my life, and it took some days, at least a week to feel right after. If thats any consolation. Maybe really consider your reaction is partly actually caused by what you took, but also, partly your own emotional response. Your home life sounds kind of stressful, it makes sense dealing with chronic health issues etc can make you prone to feeling so bad.

@Hazeleyes99 Yeah, there’s a lot of factors for sure. Thanks for talking about your experience. I’m so sorry you had that while you’re driving too. It’s the worst. I’m glad you’re better now. It helps encourages me to know others have been through it alright. And I’m thankful that you’re sharing your advice with me. It’s valuable to hear about your perspective. Yeah it’s not so bad if it’s a transient thing for sure. I actually hope when I get through this is have normal blood pressure instead of my usually low bp. My usual bp is about mid-90s/mid-60s sometimes even low-90s/58, and so and when I first had 143/91 and 111 bmp, because of the big pressure difference my body couldn’t handle it at all and it felt like millions of hot ants scurrying through my veins all at once in lightening bursts of waves (I swear it’s like how those super heroes initially receive their powers including my arms and fingers going rigid outstretched and rapidly shaking, my legs too, for a very brief moment I was in awe as I'm down on the kitchen floor in the midst of all my pain and confusion - secretly hoping this is an origin story lol). Coupled with the worst part is the muscle shaking and muscles constantly tensing, my tensed and rigid neck muscles feel like they’re strangling me and preventing the blood from coming out of my head. But I found constantly drinking lots of cold water helps lessen some of the symptoms and having the room as cold as possible. We’re there any small things you did for yourself that made a difference? Btw I’ve been working on calming myself with mindfulness, grounding, meditation, and breathing exercises and so that became really helpful even lifesaving when things got really bad.

 

[LampLights]

@zzz I just called the other big hospital in downtown and they seemed annoyed when I told them that the other big hospital didn't think I had serotonin syndrome and I told them that they didn't even seem to know or didn't want to understand that the supplements I was taking will cause serotonin syndrome. I feel like most people down here in the South are like my dad... I'm feeling super dejected. But maybe if I've already made it through a whole week I can make it through a 5 or 6 more hours until the sun comes up and then try for my mom's out-patient doctor's office.

 

[zzz]

@LampLights, that sounds like a reasonable plan to me, as long as your symptoms don't get any worse. The most important thing is to get whomever you talk to to listen to you and take you seriously. Most doctors have been trained to believe that only they know anything about medicine, and many of them will never consider the possibility that a patient might know something that they don't. Trying to convince such doctors to even listen to you is generally useless. You need to find someone who is at least somewhat open-minded, whether it's your mom's doctor or someone in the ER. A good doctor will at least give strong consideration to the possibility that you have serotonin syndrome, and will treat you accordingly. You need to find such a doctor, one way or another; you also need to do this soon, as conditions such as yours can often change rapidly without warning. Good luck!

 

[LampLights]

@zzz Thank you zzz! Your comment is at once helpful and confirms my suspicions of the poor treatment I’ve recieved so far. I went to sleep at 4am and woke up at 6:30am due to feeling over heated and haven’t been able to go back to sleep. Going to try to see if I can get some more rest. These symptoms seem to holding steady (good or bad depends on how you see it) but haven’t gone down much or gotten a whole lot worse. I hope I don’t ever hallucinate due to low/no sleep. It’ll make things tragic esp the way I’ve been treated so far.

 

[Eastman]

@LampLights

Many members on this forum report symptoms of overstimulation after taking methyl donors. The symptoms you described appear similar, except perhaps of a more extreme form, especially if you felt a need to visit the ER.

I usually attribute overstimulation symptoms from methylation treatment to excessive adrenaline. SAM-e participates in the conversion of norepinephrine to adrenaline.

I'm not ruling out excess serotonin as a cause. There are claims of methylation treatment increasing serotonin, although that is often through the use of methylfolate or vitamin B12 and may involve the folate cycle rather than direct methylation.

Do note that serotonin is a monoamine neurotransmitter, which are normally degraded by methylation. That would suggest that methyl donors like SAM-e could reduce serotonin.

Indeed, in the study mentioned in the post above, it says:

... Thus, it is expected that niacin may affect the methylation-mediated degradation of monoamine neurotransmitters by competing for labile methyl groups...

Niacin eventually converts to niacinamide, which can get methylated and in the process, reduce the methyl groups available for the degradation of serotonin and other monoamines. Niacin is often used as an antidote for excess methyl donors and is supposed to reverse the effects of the latter. From the study's conclusion:

In summary, excess nicotinamide increases the plasma monoamine-neurotransmitter levels.

 

[LampLights]

@Eastman Thank you for your reply. I'll investigate more into that. I'm open to exploring all probable causes of my symptoms because ultimately I want to get well and heal. If it the case, what steps I should start taking to help take care of myself of this?

Btw, It could be a combination of both. The body definitely can get more than one causes of illnesses at the same time. I've not only take Sam-e but the fact that I was taking more than or around 5 types of supplements that are known to increase serotonin is the most significant factor to look into further at this point, esp given the urgency.

 

[Eastman]

If it the case, what steps I should start taking to help take care of myself of this?

You could take niacin or niacinamide to quench the methyl groups in you. That will probably stop the overmethylation symptoms, and is reported to be relatively quick. The problem, of course, is that if you are high in serotonin, you could get into trouble.

Alternatively, you could take vitamin B2, which is needed for the MAO-A enzyme that breaks down both serotonin and adrenaline. Unlike with niacin/niacinamide, this will probably take a while to work, if at all. For other possible solutions, you could perhaps take a look at Joseph Cohen's suggestions.

 

[LampLights]

You could take niacin or niacinamide to quench the methyl groups in you. That will probably stop the overmethylation symptoms, and is reported to be relatively quick. The problem, of course, is that if you are high in serotonin, you could get into trouble.

Alternatively, you could take vitamin B2, which is needed for the MAO-A enzyme that breaks down both serotonin and adrenaline. Unlike with niacin/niacinamide, this will probably take a while to work, if at all. For other possible solutions, you could perhaps take a look at Joseph Cohen's suggestions.

Thanks for your feedback. You’re helpful. I can possibly look into this some more after being seen for the possible serotonin issue. I’m hesitant to try anything right now and if I do in the future it’ll only be under the supervision of a professional healthcare provider.

This whole morning I was calling around to the different doctors’ offices, unfortunately none can see me today and the referred medical doctor who’s Institute of Functional Medicine certified in multiple practices including advanced hormones, detox, cardiometabolic is out for the month. But I was able to schedule an appointment with a med doc tomorrow and another the following day with a nurse practitioner (backup plan). I’m most hopeful to work long term with the IMF doc.

 

[Gingergrrl]

@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?

I'm sorry I was not able to reply to this last night but if I had, my feeling is that if that particular ER has already written you off and noted disparaging comments in your medical record, that it would be useless in trying to get them to help you further. I would try a different hospital or your mom's doctor in the morning (now today).

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...

If it was me, instead of saying that it was an amino acid supplement from Whole Foods (that most doctors will just roll their eyes at), I would say it is an over-the-counter medication that is like an SSRI.

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

This kind of nonsense infuriates me and even if you were "emotional" to use their word, this is irrelevant to the scenario and it is unlikely that someone with severe serotonin syndrome would present clearly! Even someone who is a few days away from death from cancer could appear "emotional". To me this is irrelevant in trying to figure out someone's diagnosis or what treatment they need.

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... And he said he went through starvation and didn’t die and so I should just go to sleep.

I am sorry about your dad's reaction but he is wrong that there are no conditions in which someone could be well and then die quickly and two that come to mind right off the top of my head are anaphylaxis and sepsis (neither relate to your situation, versus in general). His example of starvation is the opposite and would not be acute vs. a much more prolonged death.

In addition to @Gingergrrl's suggest, I would suggest printing out the Mayo Clinic article that I mentioned; something from the Mayo Clinic may make an impression on the doctors.

That is a great idea and the Mayo Clinic name is still very respected across the country (regardless of their poor track record for just about everything else).

The one temporary treatment you could do right now would be a small amount of benzodiazepines, if you have any (e.g., Valium, Ativan, Klonopin). But this is only a temporary measure to keep things somewhat under control until you can get to the ER. And due to the potency of benzodiazepines, you should check either with your doctor or the ER personnel by phone before taking them.

I concur with this, too, and when I was a social worker at a hospital and we had patients with serotonin syndrome, they were given benzos in every case that I can remember. I am not saying this as medical advice, vs. what I witnessed, and you would need to be assessed by a doctor.

@zzz I just called the other big hospital in downtown and they seemed annoyed when I told them that the other big hospital didn't think I had serotonin syndrome

I would not tell the doctors that the first hospital didn't think you had Serotonin Syndrome (although if their computer systems are linked and they bother to look, they may find it on their own). I would tell them you suspect you have Serotonin Syndrome based on taking several supplements that are like SSRI's, give them the info from Mayo, tell them your symptoms, and let them make their own assessment.

But I was able to schedule an appointment with a med doc tomorrow and another the following day with a nurse practitioner (backup plan).

That is great news and keep us posted.

 

[Hazeleyes99]

Fwiw, sam-e IS a pharmaceutical drug in Russia and parts of Europe. I would really not let the doctors shrug it off, they should not anyways, plenty of off-the-shelf supplements can have serious interactions or side effects.

Please update when you can. Best wishes.

 

[Gingergrrl]

Fwiw, sam-e IS a pharmaceutical drug in Russia and parts of Europe. I would really not let the doctors shrug it off, they should not anyways, plenty of off-the-shelf supplements can have serious interactions or side effects.

I agree and it is amazing what doctors will shrug off out of pure ignorance or arrogance. Many supplements and OTC meds in one country are prescription pharma drugs in other countries. Plus many supplements can kill you if you take too much, or combine things that are dangerous together, and can have serious side effects.

How are you doing today @LampLights?

 

[LampLights]

@Gingergrrl Hi! I’m feeling better. Some tremors, shaking and rigid tenseness is down a bit now that I’m taking Propranolol 10mg tablets. It’s helping. I finally got more than 2 or 4 hours of sleep today! Probably around 6 hours with lots of waking up to drink water from feeling hot. I went to the urgent care yesterday because I started having stronger shortness of breath, pressure, heavy heart, weakness, agitation, stronger tremoring and rapid shivering, and feeling the effects of 2 weeks of little to no sleep each day. The doctor there immediately recognized that the supplements I’ve been taking are for serotonin but didn’t know how to treat and the dr’s best thought was to prescribe propranolol- which it turns out is one of the right drugs to prescribe for serotonin syndrome. I was confused and agitated and so I couldn’t think clearly while there. I brought the Mayo Clinic printouts for serotonin syndrome with me and laid it out in front of me at the examination room but dr didn’t look through it. Besides the propranolol prescription the doctor expressed couldn’t do any more for me, that’ll I’ll have to just go through the symptoms like a drug addict detoxing except maybe the ER’s IV drugs. In my confused mind it sounded reasonable. I asked if I should go to the ER, granted I was tremoring a lot and shivering and confused, and the doctor said the ER most likely won’t do anything for me because it’s been the same outcome each time... I swear the healthcare in the South is the worst. When my mom drove us back home and she noticed that I printed out an article written by a UCLA medical doctor about using an anti-serotonin medicine called Cyproheptadine for too much serotonin. I was clearly not in my normal mental condition to figure that out while being examined by the uergent care doctor to point out the treatments or possible medications used for my condition...

I wonder if this would be helpful to me if I called the urgent care doctor and ask to look into this medicine for me because it’s anti-serotonin and it’s not a rare medicine I don’t think, given it is a prescribed allergy medicine.

https://en.m.wikipedia.org/wiki/Cyproheptadine

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

Also I want to say that this doctor was so helpful, understanding, and empathetic. That doctor seemed to not be from around here. A welcomed complete opposite of the horrible “care” I received from the other “healthcare providers.” I’m hoping they’re good for others, unfortunately weren’t good for me.

 

[LampLights]

@Gingergrrl Thank you so much for helping me out with this. I’m truly grateful because I felt heard, acknowledged, and you gave me more confidence to keep on advocating for my symptoms. It’s hard when you’re experiencing it to do that. And your encouragement was needed. Including everyone’s response to my question as well! Very encouraging.

@Hazeleyes99 Sam-e being a prescription in some countries make sense now that I’m experiencing what can go wrong with it. Under professional direction and care, I bet it works wonders. Thanks for your concerns as well. Appreciate it.