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Taking SJW since 2008, one person's experience

Spunt

Regular Member
#1
I would like to start off by saying this site helped me more than ANY doctor I ever met. Also, what I talk about below is not advice, it is only a description of my experiences and I would never recommend anyone do anything ever. :)

Preface:

Before finding SJW I went to a doctor with symptoms of short seizures, tingling in my extremities, twitching and severe anxiety and depression. I was unable to sleep, the seizures being the worst when I would lie down for the night didn't help, and would go for about 72 hours without sleep before finally being able to pass out for roughly 4 hours only to wake up in a full panic. Her worthless diagnosis, which she arrived at with NO TESTS, was that I was stressed and that I should just relax. I was quite clear in telling her that I wasn't stressed before this all started. I had a good job, friends, family and the like and then all this started and that any stress was from my illness, not the other way around. Her attitude was clearly that she had patients with more profitable problems and wouldn't be bothered with me. I realized it would be a waste of time trying to force her to do her job and thankfully I have a medical background, I'm a nurse, which gave me a head start with my efforts.

If I were prone to a placebo effect I would have found relief long before SJW as I tried everything from passion flower and kava kava to different B vitamins doses high and low. Nothing brought any substantial relief and I continued to decline, then I found this forum. Through the pages of these forums I read up on not only SJW but just about everything else people mentioned that helped them. I started with doses lower than anyone talked about, chopping pills and opening capsules to obtain the lower dose and kept a journal. I only used one medication at a time, such as 5 HTP, until I had clear picture of how it worked with my system. Through massive trial and error testing, careful logging, patience and the help of a good spirit or two I slowly got my life back. Over a period of months and then years I fine tuned the dosing.

Experience:

I'll skip listing everything that didn't work and simply post what did. I started with 5 HTP alone, only 10-30 mg a day split up throughout the day from 9am-5pm, outside those hours resulted in melatonin creation causing drowsiness in the morning. or due to the higher seratonin, weird dreams at night. After I sorted that out I eased into SJW. I started at only half a tablet every other day, my system was so used to being extremely low that higher doses brought all sorts of side effects. I gradually, and I mean GRADUALLY, brought the dose up to where it is today, 1 tablet a day. I take half in the morning and half in the afternoon. I also take about 50 mg of 5 HTP split into 10 mg doses that I take every couple of hours and about 250 mg of l-tyrosine, also split into many small doses throughout the day. The l-tyrosine is easier to work with as I am able to take it any time of day or night without ill effect as long as the amount is right. As seasons or stress levels change I have to modify my dosing and have found that mainly it's the l-tyrosine that needs the most adjusting, sometimes needing almost 500 mg a day and other times only 100 mg. Although my life isn't back to "normal" I can say the seizures are all but gone, the twitching is gone, the anxiety is gone, the depression is manageable and I can sleep again. I still have the tingling in my extremities and I suspect that will never heal but it stopped getting worse and appears to have leveled off.

Thank you to Kelly and also to the many people who took time to post here! Feel free to ask questions, either privately or publicly, but please be aware it may be a week or so before I see it. :lookaround:
 

Soccer Dude

Regular Member
#2
Hi Spunt, I just read your story and it seems a lot like mine. I had a normal job, was involved in ministry, living life. Although looking back I did notice a decline in my mood over the years, such as not enjoying things as much as I did, not getting excited about cool things like I would normally, and some general anxiety.....But, I was living life and then thought I was normal...Anyway, 2 years ago while driving I had a strange occurrence, whether it was a seizure or almost fainting experience, (it felt like my brain turned off/on really quick) I was immediately in a state of shock/panic, filled with adrenaline so it seemed. My stomach hurt, I was shaking, internally I didn't feel normal, massive fear. 100% insomnia that night, etc... I went to the ER and they ran some basic tests and just thought I had a fainting experience. I went to a MD who only listened to my heart and said I was fine, etc....Then after hundreds of tests, many doctors, I continued to look for answers.... I tried SSRI's which made me MUCH worse....

Anyway, all the horrible anxiety, panic, insomnia, then depression wasn't me, it wasn't who I was before this happened. Something got out of balanced and triggered this downhill spiral. Meds only made me worse...I just wish I had done something natural to start with.... So, after 2.5 years almost I tried SJW. I did try amino acids therapy through a ND, and ended up on HIGH doses of 5htp and tyrosine as part of the therapy, for example I was probably on 1100mg 5-htp, and 6500mg of Tyrosine, with some mucuna (l-dopa), SAM-e 400mg, 4000mg MSM, B12, 5-MTHF, Choline, Pantothine, etc... (all mixed in a 32oz bottle of water which I drank about 4-8oz at a time until gone from morning until about dinner) It pulled me out of a dark place, but never got me to steady state. There were brief moments of feeling normal (happy) but it would only last moments. But, I felt the regiment was over stimulating me, making me feel worse, etc... So, I backed down my doses, and then got more depressed. So, now I'm on SJW. I continue to take small amounts of 5-htp (50mg to 100mg on occasion) and 250mg-500mg of Tyrosine. No SAM-e. No MSM as these are sulfur donors and I think mess with my methylation defects...

My anxiety, panic have really calmed down. I have motivation to want to do things, yet I'm still feeling depressed, no real joy or excitement. I'm hoping to get to the next level and feel normal, at least feel more real than I do now. I kinda feel like I'm just going through the emotions of life. On SJW I do feel some normal feelings at times, very rare and still short lived. But there is a sense of more stability in my mood even though it's still kinda low, but just doesn't get really bad like it was with the panic/hopelessness, etc...

I just increased my dose of SJW to 1200mg (Perika). As I feel I need a higher dose to make it work. I think my neurotransmitters got sooooo low from the SSRI's I went on/off that I need something to help maintain a normal level of neurotransmitters. The amino acids couldn't do it on their own, so hopefully SJW will to do trick. Hopefully this is what will make me feel better, and I'm hoping there isn't some other issue. I've had my thyroid tested multiple times and it keeps coming back normal. I could have adrenal fatigue, but I have energy in the morning, it's just the afternoons that are my worse.

Anyway, glad you are doing well and have figured out what works best for you. I'm still trying to get something to work for me.

Soccer
 

Spunt

Regular Member
#3
Soccer Dude;n24550 said:
Hi Spunt, I just read your story and it seems a lot like mine. I had a normal job, was involved in ministry, living life. Although looking back I did notice a decline in my mood over the years, such as not enjoying things as much as I did, not getting excited about cool things like I would normally, and some general anxiety.....But, I was living life and then thought I was normal...Anyway, 2 years ago while driving I had a strange occurrence, whether it was a seizure or almost fainting experience, (it felt like my brain turned off/on really quick) I was immediately in a state of shock/panic, filled with adrenaline so it seemed. My stomach hurt, I was shaking, internally I didn't feel normal, massive fear. 100% insomnia that night, etc... I went to the ER and they ran some basic tests and just thought I had a fainting experience. I went to a MD who only listened to my heart and said I was fine, etc....Then after hundreds of tests, many doctors, I continued to look for answers.... I tried SSRI's which made me MUCH worse....

Anyway, all the horrible anxiety, panic, insomnia, then depression wasn't me, it wasn't who I was before this happened. Something got out of balanced and triggered this downhill spiral. Meds only made me worse...I just wish I had done something natural to start with.... So, after 2.5 years almost I tried SJW. I did try amino acids therapy through a ND, and ended up on HIGH doses of 5htp and tyrosine as part of the therapy, for example I was probably on 1100mg 5-htp, and 6500mg of Tyrosine, with some mucuna (l-dopa), SAM-e 400mg, 4000mg MSM, B12, 5-MTHF, Choline, Pantothine, etc... (all mixed in a 32oz bottle of water which I drank about 4-8oz at a time until gone from morning until about dinner) It pulled me out of a dark place, but never got me to steady state. There were brief moments of feeling normal (happy) but it would only last moments. But, I felt the regiment was over stimulating me, making me feel worse, etc... So, I backed down my doses, and then got more depressed. So, now I'm on SJW. I continue to take small amounts of 5-htp (50mg to 100mg on occasion) and 250mg-500mg of Tyrosine. No SAM-e. No MSM as these are sulfur donors and I think mess with my methylation defects...

My anxiety, panic have really calmed down. I have motivation to want to do things, yet I'm still feeling depressed, no real joy or excitement. I'm hoping to get to the next level and feel normal, at least feel more real than I do now. I kinda feel like I'm just going through the emotions of life. On SJW I do feel some normal feelings at times, very rare and still short lived. But there is a sense of more stability in my mood even though it's still kinda low, but just doesn't get really bad like it was with the panic/hopelessness, etc...

I just increased my dose of SJW to 1200mg (Perika). As I feel I need a higher dose to make it work. I think my neurotransmitters got sooooo low from the SSRI's I went on/off that I need something to help maintain a normal level of neurotransmitters. The amino acids couldn't do it on their own, so hopefully SJW will to do trick. Hopefully this is what will make me feel better, and I'm hoping there isn't some other issue. I've had my thyroid tested multiple times and it keeps coming back normal. I could have adrenal fatigue, but I have energy in the morning, it's just the afternoons that are my worse.

Anyway, glad you are doing well and have figured out what works best for you. I'm still trying to get something to work for me.

Soccer
It can take alot of trial and error and I am glad you haven't given up. You may not get back to "normal" but I hope that you'll at least be able to find a good nights sleep, a genuine smile on occasion and a sense of emotional stability and predictability.

I have to work many hours and I may miss a post here and there, please feel free to ask me a question twice if I miss something in a reply and private messages are welcome too.

Best Wishes