5HTP users - have you had this bad effect?

Discussion in 'Fibromyalgia Main Forum' started by CelticLadee, Aug 30, 2003.

  1. CelticLadee

    CelticLadee New Member

    I just started using 5HTP two nights ago.

    I took 1 cap containing: Vitamin B6 (from 5 mg Pyridoxal 5'-Phosphate) 3.4 mg. & 5 Hydroxytryptophan 50 mg.
    Other ingredients: Cellulose capsule. May contain one or more of the following hypoallergenic ingredients to fill space - Magnesium Citrate, Leucine, Silicon Dioxide.

    The first night my brain area in the back of my head & towards the top of my head felt a numb like sensation.

    The second night I woke up around midnight & got up. I had the same sensations in my brain as the previous night plus a tiny twitching in the back of my brain that coincided with strobing light in my eyes. I felt very groggy but also a lot of anxiety from this weird reaction. I went back to bed and fell asleep for awhile and when I woke up it was gone. My brain still fills numb like.

    I remember thinking that "this is scary - I'm never taking this again" before I fell asleep.

    Well, I thought I'd post this to see if anyone else has ever had this trouble from 5HTP or has any comments about this. I thank you in advance for your help.

  2. klutzo

    klutzo New Member

    I wish you were seeing a holistic doc to help you with this.

    The way I understand it, about 1 in every 150 people has severe GI upset with 5-HTP, but that is the only side-effect I've heard of or read about. I am one of them, which is why I am now taking only a tiny dot of it on soda crackers twice daily....the normal starting dose of the formula I'm taking is 4 caps twice daily, one hr. before meals. It took me a week to work up to about 1/20th of one capsule!

    Even though your symptoms from 5-HTP are not the same as mine (severe burning in the stomach, which is supposed to mean I really, really need the 5-HTP), you might try taking the capsule apart and slowly working up to the correct dose so you can get used to it.

    Also, remember that if you are taking any serotonin re-uptake inhibitors, you should be tapering them down as the dose of 5-HTP goes up. Otherwise Serotonin Syndrome, which is dangerous, is a possibility.

  3. Aeryn

    Aeryn New Member

    Just because it is "natural".... Good luck, Aeryn

    This is a post I put up on 7/28/03

    Do a search on 5-HTP and you'll get people's good reactions and bad:

    I had a bad reaction to this. It made me feel anxious, itchy, and then I experienced terrible pain all over my body. Exactly the symptoms from the bad batch of Tryptophan. I have never had FM symptoms like that before.

    I can take SSRI's and have had no trouble with prozac, although effexor kept me up all night.

    The idea that this is "natural" and so "harmless" is a load of bull. I read on many sites promoting it denying that 5 HTP does not cause the symptoms I had. This is a powerful supplement to help or harm. It is exactly like taking a pharmacuetical drug, only without the extensive testing for side effects or controls on quality.

    Don't get me wrong, I want this stuff to stay legal and OTC. But we shouldn't act like it is like drinking chamomile tea.

    Take care if trying it, start low and stop if you have any reactions.

    [This Message was Edited on 08/30/2003]
  4. CelticLadee

    CelticLadee New Member

    Hi Klutzo,

    Thank you for your response.
    I am not on any MAOIs but that was an excellent thought.
    I just read about Serotonin Syndrome. Had never heard of it.
    You know so many interesting things and I am thankful you share them here with all of us. Always learning from you.

    Well, yes Klutzo, I am seeing a ND. He is the one that okayed me to try 5HTP. I was having trouble sleeping because of the Armour Thyroid I was on caused me to have a bad reaction. My ND thinks because I have multiple sensitivities that perhaps one of the proteins or something in it caused my troubles. If you recall I had a post about this asking you and Madwolf for help last week when my ND was on vacation. If you read the thread something like: "Klutzo, Madwolf Armour Thyroid/ZMA can't sleep" by CelticLadee you can read my update and what the ND told me.

    Anyway tonight I am sticking to magnesium glycinate. LOL. It is too scary having your brain do strange things. I don't even want to try a little bit.

    Wow. Your tummy is very delicate. Such a tiny amount causing you such problems. I read your post: you were saying it was because you are so low on serotonin that you are having this reaction. I sure hope you continue to do better on it as you get the bugs worked out. Smart nurse giving you that advise.

    Monday I start Levoxyl. At first I was bummed about it but my ND explained how it is natural with less things in it that may cause me bad reactions so I don't feel so bad now. He will give me T-3 seperately later on if I need it. He says I definitely don't need Cortef as my cortisol levels are normal except in the am. That is why he put me on DHEA/Pregnonlone before bed and rising to help stimulate cortisol when I need it only.

    Thanks again for your response. Hubby and I were just talking about my experience and wondered if it was just some sort of tiny seizure maybe or maybe not stimulated by the 5HTP? I definitely felt confused at the time of it which would be another indicator I think besides the brain sensations/disturbances - numbness/ flashing lights, etc.

    Never a dull moment in our world huh?

    My best to you,
  5. CelticLadee

    CelticLadee New Member

    Thanks for that input.

    Yeh, I felt a little reluctant trying it but so many do benefit from it so hoped I would be in that category. My ND indicated that it was safe so I took that in consideration as I have some faith in him. I don't totally trust anyone as we are all flawed trying to do the best we can - if you follow my meaning.

    I totally agree that natural does not mean "SAFE"! A lot of meds are safer as they have undergone rigorous testing and research whereas a lot of the natural stuff has not.

    Everything I research seems to have both sides of the story and it only serves to confuse me. I wish things were more clear cut so I didn't have to always wonder what is or isn't right or safe, etc. It is driving me crazy! LOL

    Thanks for posting.
  6. klutzo

    klutzo New Member

    Hi Aeryn - I agree that this treatment should be carefully supervised. My holistic practitioner is an M.D. who has taken a course in Neurotransmitter Probelms from the doctor who invented the treatment protocol. Periodic testing of my neurotransmitter levels will mark my progress. Not only is this stuff unbelievably strong, it is cutting edge stuff with no long term effects known. I would try just about anything at this point....whenever I imagine having to live the rest of my life like this, I fall into deep depression.

    Celtic Lady - I am so glad you have an N.D. (sorry if you already told me about this....my memory is gone). Have you had your neurotransmitter levels checked before starting this? Are you in a state where your N.D. can prescribe lab testing? The urine test kit my doctor uses for neurotransmitters is made by NeuroScience (they have a website by that name), and is their test kit #9012. It is also possible to have your blood level of serotonin checked by any doctor. You are right, we seem to constantly be bumping up against "Catch-22" situations in our attempts at treatment. I pray the new thyroid med will work for you,

  7. catsii

    catsii New Member

    I have to add my 2 cents worth in answer to the natural comment. Poison ivy and poison oak are natural but can play havoc with you if allergic.

    I worked in skincare and makeup for years and people would come in to complain and or bring items back..and say they had reaction and couldn't understand because it was all "natural" ingredients. My pat answer to them was just because its natural doesn't mean everyone can use them.

    I took prozac for quite some time and at urgings of family and friends got off it and tried st. john's wart. It ate up my tummy and i had so much pain from it. So..i also urge to take heed...even though an item is natural.

    We all react differently to different chemicals whether natural or synthetic!

    Good luck,
  8. Kim

    Kim New Member

    I have a friend who gets headaches every time he takes 5HPT but it knocks him out. I've read studies that cited headaches as an infrequent side effect.

  9. CelticLadee

    CelticLadee New Member

    Klutzo - LOL...don't worry about it...I didn't expect you to remember...that is why I made reference so you could be reminded. My memory is shot too so I can totally relate.

    No .. I haven't had my neurotransmitter & serotonin levels checked. I live in Washington state so I can have lab test prescribed through my ND thankfully. I will have to put it on the back burner for now though. My funds are exhausted right now. Just paid for hubbies dental work, then my mammogram and yearly physical & numerous ND appointments. Next I am having 2K of dental work...the rest of my amalgams removed Sept - Oct. Hubby has to have a couple more crowns too. OUCH!

    I did take a vision test at a neuro toxicity site earlier this year & tested positive. I wondered if this test was rigged though so you would pay money and continue with more tests and treatment. Skeptical. Are you familar with that site?

    Next apptmt. with my ND I will ask him about the tests you mentioned. I am going to have my hair analysed for metals.
    I will be sharing my 5HTP experience with him to find out what he thinks happened. So strange & scary.

    My best to you Klutzo,
  10. CelticLadee

    CelticLadee New Member

    Catsii -

    You reminded me of an experience I had last month. My neighbor ladies are into natural stuff. They wanted me to try this new face cream & serum that made your skin look younger & more alive ... less lines. Both of them looked great so I could see how good it worked for them. They said it was safe, ETC.

    When I used this cream my face became swollen and red, my eyes were puffy and half shut and I got hives on my face and neck.

    So much for natural and safe...LOL.

  11. CelticLadee

    CelticLadee New Member

    Kim.. that is very interesting...
    Ya know I also did get a mild headache from it.
    My hubby read somewhere that you should not use it for long term. I think someone like Klutzo who is smart about it, taking tests and is being monitored by her doctor is the exception. It is known to help some people and not everyone seems to have problems with it. We just have to be careful and smart about such things. If I have a bad reaction to something I don't understand - I quit. It just isn't worth getting sicker. My ND will hear about it next. He can figure out what to do or not do better than me. After all he is trained in all this ... I am not. (wink)
    Appreciate your input about the side effects.
  12. klutzo

    klutzo New Member

    No, Idon't think the Neurotoxity test is rigged, because I passed it! It said that it was highly unlikely I had been exposed to neurotoxins.
    Here is another interesting test for you to look into. My doctor just asked me for info on it, and I am hoping he will agree to sign the requisition for it. It is called AMAS, which stands for Anti-malignan Antibody in Serum. It can detect cancer anywhere in the body, as small as a pencil point, as long as it has not already reached the terminal stage when your body stops producing antibodies. The test is a simple blood test and is 95% accurate. It costs $135, but Medicare pays for it all (I am on Medicare). Anyone can order a test kit online from OncoLab in Boston, which is where you send the test when it's done. You have to get the doc to sign a form, find a lab that knows how to run the test, and supply 3 lbs. dry ice for shipping it FedEx overnight. AMAS eliminates the need for many x-rays and scans, mammograms, pap smears, colonoscopies, etc. Most docs have not heard of it, but there is plenty of info on the web that you can print and take to them. Since I could not tolerate the colonoscopy prep, I want to get this test done. Why have you not heard about it? Think about what this could do to the profits of the companies that make scanners, x-ray machines, endoscopes, etc. not to mention the incomes of the doctors who do nothing but that for a living. Some of these people say there is no proof, but I have uncovered tons of journal articles on this, and the fact that Medicare pays for it says a lot, since they won't pay for a lot of other things that are accepted practices.
    I have also uncovered a new do it youself at home test for sleep apnea! The doctor has to order it for you. It is called SleepStrip, made by a company called Influ-ENT, and goes on your face like a bandage. It records for five hours and is very accurate. A graph appears right on the bandage that tells you if you have apnea, and what level of seriousness it is at. Amazing.
    Sorry to run on so long!
  13. CelticLadee

    CelticLadee New Member

    Klutzo -
    Wow! Thanks for sharing about those tests. I am suppose to have a colonscopy too but don't want to go there. I have too many sensitivities and don't want to end up sicker. That test you shared about sounds great. I will look into it. Also the strip that tests for sleep apnea. I went to a sleep disorder site last night and took a test. It suspected sleep apnea, narcolepsy & restless leg syndrome. Big surprise! LOL. I do know for sure I periodically have restless leg syndrome. My dad has it too.

    No kidding...so you were negative for neuro toxins. That is interesting. Guess I shouldn't be so skeptical. Especially with all the trouble I seem to have with my brain. I will take it more seriously now and delve into more information on it.

    You are a wealth of information and I thank you for sharing it. I pasted a copy of your post in my journal so I can follow up on those tests at the right time. It will be awhile before I can do them but they sound very promising. I will keep my eye out for your posts in the future in case you report on your experience with them.

    Hope you are gaining ground. We certainly have to fight hard for every inch! Thanks for your help & encouragement.