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Activ B6 - insomnia side effects

Hope78

Senior Member
Messages
112
Location
Germany
Hi!
My doctor prescribed 25 mg of p5p (active form of b6, because my liver has problems converting b6 into the active form). I only took half a capsule for several days and experienced horrible nightmares, disrupted sleep, feeling anxious and agitated. During the day (I take it in the morning) I feel fine with it.

Any suggestions why I am so overreacting? Maybe because I was tested high for dopamine and low for serotinine? p5p is a strong dopamine booster. In general I do not tolerate ANY energy boosting supplements.

My doctor says I really have to take B6 to get better. Aditionally I have to do methycobalamine shots once a week for methylation and nitrosative stress.

But sleeping only 3 hours of interrupted sleep with panic attacks inbetween really is no option as insomnia was the reason that triggert my "cfs"/exhaustion. And my insomnia finally got better after 2,5 years...just to rear its ugly head again with b6 :-(

Unfortunatley I can only speak to my doctor at the end of january!

Any suggestions/experiences would be really appreciated!

Thanx and sorry for my English,

Hope
 

WillowTree

ME/CFS is NOT fatigue!
Messages
49
Location
Illinois
Hi, @Hope78. I don't have any suggestions. All I can say is that I cannot tolerate any of these supplements either -- activated B6, methylcobalamin, etc. I have tried three times now with supplements from different companies, always with the same result. I had the same problem with sleep as you described minus the panic attacks. Also, it makes my health and functioning levels plummet, requiring months before I can get back to my baseline. My doctor also says that I need this, but my body cannot tolerate it, even in very small doses. I am so tired of having a bad reaction each time and throwing expensive products away. I wish there was a solution, but I don't know what it would be. I have no intention of repeating this a fourth time. I don't know what my doctor will say when I see him in April.

Your English is fine. Nice to have you on the forum. Perhaps others may have some suggestions. Take care.
 

Hope78

Senior Member
Messages
112
Location
Germany
Hi Willow, thanks for your answer. Ok, seems we're in the same boat. Hopefully our docs have any helpful suggestions. Because he said I really need this stuff for recovery. But I also need my sleep. I put so much hope in this and feel really a bit lost just in the moment. I stopped the B6 today as the last night was full of terrible dreams, insomnia and anxiety along with intense feelings of heat.
Can you contact your doctor via mail or phone?
My next consultation will be in January.
 

Crux

Senior Member
Messages
1,441
Location
USA
Hi @Hope78 ,

May I ask how the doctor came about this diagnosis? What sort of tests were done?

The side effects from the p5p seem too strong. (and wrong)
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
Willow, have read Freddd's active Bs protocol. He says to start with some basic supplements before adding the Bs. Maybe that would help.
 

WillowTree

ME/CFS is NOT fatigue!
Messages
49
Location
Illinois
Thank you, Little Bluestem, for your input. I will look into learning more about Fredd's protocol to see if I can figure this out.
 

Hope78

Senior Member
Messages
112
Location
Germany
WillowTree, I am still waiting for some tests to come back. But he already did some tests and they showed that my body is lacking substances which need active B6 to be build. I was tested positive for high nitrosative stress, for leaky gut and IgG4 histamine reactions, gut inflammation, candida and some other things. New year I will get the results from the detoxification test and something about estrogen/breast-ovary-cancer-risk. I also did some tests to see how my immune system is working and it does not work properly. What a suprise, haha.

Ok, so never the less: I wish you all a nice and peaceful Merry Christmas!!!

Hope78
 

Johnmac

Senior Member
Messages
756
Location
Cambodia
Not really an answer, but a bit of background, & speculation:

B6 & P5P are prescribed to people with pyrrole disorder (supposedly 10% of us), who are low in B6. They commonly restore dreaming & dream recall - as they did for me.

The time to back off is (typically after weeks or months) when your dreams become too lurid or disturbing.

Your dreams being lurid & disturbing immediately may suggest that you don't have a B6 deficiency, & that taking extra tips you into toxicity. (That's the speculative bit.)

Lasting damage from B6 toxicity is rare to nonexistent according to Dr Walsh, the pyrrole expert.

There was no way of telling whether a person could convert B6 to P5P, last time I looked, other than by observing responses to B6.
 

Hope78

Senior Member
Messages
112
Location
Germany
Hi,
B6 & P5P are prescribed to people with pyrrole disorder (supposedly 10% of us), who are low in B6. They commonly restore dreaming & dream recall - as they did for me.

I was testet positive for pyrrole disorder and also had B6 deficiency. But nevertheless I've always been a vivid dreamer.

This stuff really seems to be very complex!

My doctor called back, told me to stop the p5p for a week and then try it again.

Since I stopped the p5p the nightmares & anxiety & fragmented sleep vanished and I sleep 5-7 hours through the night again (except when I have stress).

I suppose myself to have the comt polymorphism because I am very high in dopamine, can't tolerante any stimulants, suffer from severe pms (estrogene related problems) and can't handle any stress.

My doc says the comt test will make no difference regarding the treatment protocoll.

Unfortunately, without medical advice/order, genetic testing is not allowed in Germany.
 

Hope78

Senior Member
Messages
112
Location
Germany
Oh wow, interesting stuff on Dr Walsh's page!
And yes, my reaction to active b6 is really odd.

I was tested for both: hypo- and hyperadrenal! Depends on the stress level. Sometimes I am very, very low in cortisol with symptoms of vomiting and severe weakness and sometimes my cortisol is way too high. I can't tolerate adrenal stimulants, makes me go through the roof immediately! Even my serotonine levels were sometims high, sometimes low. Probably nervous system dysregulation at its best :confused:
 

Johnmac

Senior Member
Messages
756
Location
Cambodia
Oh wow, interesting stuff on Dr Walsh's page!
And yes, my reaction to active b6 is really odd.

I was tested for both: hypo- and hyperadrenal! Depends on the stress level. Sometimes I am very, very low in cortisol with symptoms of vomiting and severe weakness and sometimes my cortisol is way too high. I can't tolerate adrenal stimulants, makes me go through the roof immediately! Even my serotonine levels were sometims high, sometimes low. Probably nervous system dysregulation at its best :confused:

Sounds quite difficult - most of us just have one or the other.

Your response to B6 makes me wonder if the B6 test was accurate - but I'm not really qualified to guess.

I largely fixed hypoadrenal by fixing methylation (the Freddd Protocol). It enabled me to drop my hydrocortisone dose from 30 mg/day to 5; and to go off DHEA (was 30 mcg/day). It also allowed me to go off thyroid meds.
 

Hope78

Senior Member
Messages
112
Location
Germany
Just a little update.
As breast cancer is running in my family my doc ordered an estrogene etabolism test.
Came back nearly normal, but there was a notation that there's low methylation of 2 estrogene metabolites suggesting an isufficient activity of COMT.
Ok, no genetic test, just an enzymatic testing, but I already suggestet to have the polymorphisms so I guess that's it.

Could be the reason why I don't tolerate methyl B12 and p5p?
B12 also makes me wake up too ealry without being tired (even if I needed 2 hours more and am physically exhausted).. Before B12 I was tired after the first awakening and able to sleep on a few hours. Now I am not. High catecholamines? Suppression of melatonine (once read B12 is also described in delayed sleep phase disorder and able to reduce the amount of sleep. But that's not what I wanted).

So the doctor in the lab who evaluated the test recommends to take "methionine". In fact, amino acid test showed very low methionine levels.

Better to take just methionine or the active form SAMe?

And just a bit confused. Does a COMT polymorphism means to be an under- or overmethylator?

As I understood the COMT doesn't use up the free methyl groups so it's overmethylation? Pretty complex stuff, feel like an idiot :nervous:.
And there are so many different recommendations on how to treat the COMT thing.
Use phenlyalanine and tyrosine (huh? Already too much catecholamines), use B vitamines, don't use B vitamines, use SAMe, avoid SAMe just as any other methyl donors.

My head is just spinning.
 
Messages
42
Location
Belgium
But sleeping only 3 hours of interrupted sleep with panic attacks inbetween really is no option as insomnia was the reason that triggert my "cfs"/exhaustion. And my insomnia finally got better after 2,5 years...just to rear its ugly head again with b6 :-(

Interesting that you dream a lot while at the same time having lab results that say you're low in B6. Dreaming points to sufficient acetylcholine being made which depends on sufficient B6. But I'm not entirely clear on the whole mechanism here either. I'm currently struggling with the same things but I'm still not dreaming often (once or twice each two weeks),before I started with supplementing P5P along with magnesium I dreamt or was able to recall dreams only a few times per year.

Are you taking any magnesium at the moment? If you've taken it before, what was your response to it? If you haven't tried it yet I'd be very interested in hearing your response to it combined with the P5P.

Do you have any issues like cramping, eyelid twitching etc? Do you have any issues with anxiety or panic attacks in general (without the P5P). If so those would all point to magnesium being low.

Are you taking any other supplements?

Just a little update.
As breast cancer is running in my family my doc ordered an estrogene etabolism test.
Came back nearly normal, but there was a notation that there's low methylation of 2 estrogene metabolites suggesting an isufficient activity of COMT.
Ok, no genetic test, just an enzymatic testing, but I already suggestet to have the polymorphisms so I guess that's it.

Could be the reason why I don't tolerate methyl B12 and p5p?
B12 also makes me wake up too ealry without being tired (even if I needed 2 hours more and am physically exhausted).. Before B12 I was tired after the first awakening and able to sleep on a few hours. Now I am not. High catecholamines? Suppression of melatonine (once read B12 is also described in delayed sleep phase disorder and able to reduce the amount of sleep. But that's not what I wanted).

So the doctor in the lab who evaluated the test recommends to take "methionine". In fact, amino acid test showed very low methionine levels.

Better to take just methionine or the active form SAMe?

And just a bit confused. Does a COMT polymorphism means to be an under- or overmethylator?

As I understood the COMT doesn't use up the free methyl groups so it's overmethylation? Pretty complex stuff, feel like an idiot :nervous:.
And there are so many different recommendations on how to treat the COMT thing.
Use phenlyalanine and tyrosine (huh? Already too much catecholamines), use B vitamines, don't use B vitamines, use SAMe, avoid SAMe just as any other methyl donors.

My head is just spinning.

Low COMT activity is associated with COMT ++ in that catecholamines are not broken down quickly.

Don't be hard on yourself. If this was easy the doctors would have figured it out... ;)

The best thing to do is just test what works for you, it doesn't matter what anybody else or current research/literature is saying. Nobody has all the answers and you're the best person to fill in the blanks.
Yes, experimenting like that is tedious and can cost quite a bit of money but it's worth it. You're worth it :)
 

Hope78

Senior Member
Messages
112
Location
Germany
Hi McGyver,
thanks for your reply.
Interesting that you dream a lot while at the same time having lab results that say you're low in B6
Lab test about one year ago showed low B6. Tested again currently and B6 was in the normal range. But doc told me that doesn't matter as it sais nothing about if B6 is converted into its active form.

Are you taking any magnesium at the moment? If you've taken it before, what was your response to it? If you haven't tried it yet I'd be very interested in hearing your response to it combined with the P5P.
Do you have any issues like cramping, eyelid twitching etc? Do you have any issues with anxiety or panic attacks in general (without the P5P). If so those would all point to magnesium being low.

I am taking magnesium citrate, sometimes glycinate, sometimes threonate. And I feel no effect from it, neither positive nor any side effects. It does nothing for sleep and, despite taking magnesium, I sometimes have the twitching eyelids and cramping muscles going on. Maybe I am taking not enough?
And yes, sometimes I have issues with anxiety, but never without any reason. When I take B6 I am suffering from anyiety out of the blue.I am very dysregulated in general due to early childhood trauma so I guess my hpa axis is pretty overreacting. Not a good thing in combination with comt polymorphism!
 

Gondwanaland

Senior Member
Messages
5,094
Nightmares, insomnia and anxiety/panic attacks can be symptoms of hypoglycemia. You can measure your glucose when it is happening. B6 is one of the most important vitamins to increase sensitivity to insulin. My impression is that when it is taken in a B complex the effects aren't so extreme.
 

Hope78

Senior Member
Messages
112
Location
Germany
Hi Gonwanaland, I sometimes suffer from hypoglycemia, but it feels different than the symptoms I get from b6. The dreams I have with b6 are so much more vidid (like cinema with 3D and dolby surround) than without. Also eating something suggary does not resolve the b6 anxiety.
I will try the B complex! Hopefully some other bvitamins are balancing the b6 effects out. I really don't like these mega doses of vitamins..
 

Hope78

Senior Member
Messages
112
Location
Germany
oh...is b6 stimulating the thyroid? Not good in my case because I am already taking thyroid hormones (I have to, although my THS was normal without. All the doctors are insisting on hormones to prevent further growing of my nodules). So now my TSH with medication is 0.8, without it was 1,5. I was never hypothyroid but the docs told me I have to take the medication (also to prevent cancer, because cold nodules sometimes turn into cancer). I hate the thyroid hormones and feel worse since taking them, but no matter which doctor I ask: they're all saying the same. Stopping thyroid medication increases the risk of further growing of the nodules. I want to avoid surgery at all costs. I can't tolerate anesthesia! Since taking the hormones I feel more tired than before (probably due to some interaction with cortisol!).