• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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narcissistic parent

outdamnspot

Senior Member
Messages
924
Because you are sensitive to medications, consider over the counter supplement Lithium Orotate before a prescription Lithium.

I'm glad you found this forum. Welcome.


That you for making me feel welcome, SoS. I do feel a little like an imposter, but oh well.

I have a bottle of Doctor's Best Lithium Orotate. It's the only thing that has a mild anxiolytic effect without causing some insane paradoxical reaction (I can't even take magnesium, Taurine, NAC .. anything GABAergic).

Unfortunately, I get overwhelmed and obsessive and struggle to self-monitor, so I've been afraid of raising the dose without a physician's guidance.. not because of toxicity, but because I'm impulsive and make changes too frequently and never trust myself.

But I do take 5mg at night .. it makes me feel sleepy and a little blunted, and increase fatigue I think.
 

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
I'm glad you found us too. :thumbsup:

I felt like an impostor too, still do a lot of the time.
even more for us to share.:p

I would like to share a discovery I made some time ago.
(I am now 55.)

There are no "grown-ups".

They are all just pretending - they are all impostors.

Most of all, beware of the ones who do not know this. :p
 

caledonia

Senior Member
Thanks for your replies everyone.

First off, and I really hope this is okay, but I don't have an official CFS/ME diagnosis. I suffer from ADHD, OCD, severe depression and agoraphobia. I used to prominently post on neuroscience forums like imminst and mindandmuscle, but I have such a wide range of medication and supplement sensitivities that have been getting progressively worse, and so I figured something else might also be up; since I know medication sensitivities are a facet of CFS, I came here in the hope I could relate more to others. Whenever I report that e.g. simple Vitamin D creates a lot of anxiety, it's met with confusion.

I'm glad you made it here; I think we can be helpful. First off, read this article regarding mental illness and methylation:
http://metabolichealing.com/michael-s-blog/mental-illness-or-methylation-mutation/

I believe that methylation and detoxification problems explain both your mental illness and your medicine and supplement sensitivities, and that methylation treatment should be helpful. There are many people here who are knowledgeable about methylation, and many of us are experimenting with methylation treatment.

So, the primary difficult has been getting my parents to gauge the extent of my anxiety. Most therapists have just suggested I give up at this point, since you can only go so far in trying to change someone.

I wouldn't waste energy trying to change them. If they don't get it by now, they're not going to get it.

To answer your questions, as far as anxiety goes, I've tried:
SSRIs (don't help much, get movement problems on them), atypical antipsychotics (akathisia, worsened anxiety), benzos (paradoxical reaction), stimulants (more irritable), MAOIs (Parnate was the best for depression and ADHD, but I couldn't sleep on it). More recently, I tried Memantine and Riluzole, which both worsened my anxiety for some frustrating reason.

I haven't tried things like Lithium and Lamictal, but am considering going down that route next. I had an okay response to Neurontin, but it caused severe brain fog and apathy.

If you get a 23andme gene test, you can see which detoxification pathways you have mutations on, and which meds you're more likely to have trouble with, or at least it might explain why you've had trouble with certain drugs. The 23andme gene test is also a good idea if you're going to try methylation treatment. Many people here avoid drugs as they've had so many bad reactions.

Do you have any exposure to heavy metals, such as mercury fillings? Metals can cause a wide range of symptoms including mental health problems. Any other toxic exposures such as pesticides, anesthesia, etc.? Are you sensitive to things like paints, markers, car exhaust, new carpet, etc.?

In addition, you've been poly-drugged. Psych drugs can have side effects and withdrawal syndromes which just add to your original problems. Most psychiatrists would diagnose you have having new mental problems, when it's actually caused by the very drugs you've been taking. You may have to be very cautious when tapering off psych drugs to minimize these problems, tapering no more than 10% of the previous dose every 3-6 weeks. The Paxil Progress forum is a good resource for psych drug tapering.

I live in Australia, but am a citizen of New Zealand. I would love to just go back to New Zealand, since I have friends there, but due to the severity of my condition (essentially housebound) and poor medication responses, it isn't possible right now.

I suggest contacting the disability services in New Zealand and see if you can get disability through them. Then, if so, get started on a claim right away.

Check out the Methylation Made Easy videos link in my signature.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Dont feel bad that therapy didnt help you... when that happens I personally dont think its the persons fault but rather the therapies fault itself. The therapy or the psychriastrist simply wasnt right for that person. I dont have the issue you have but it took 6 or 7 psychologists before I found one who understood my issue (I have Aspergers which was missed and due to that normal therapy wasnt helping me at all and the psychs struggled to understand my ways of thinking).

About all your chemical sensitivities, there are various things which can cause many drug sensitivities. You may consider getting a 23andME DNA test done (you can look that up online, its not too expensive for what they do). Once you have that, run the raw DNA results from it, throu the geneticgenie site .... you will probably find you have a polymorphism of your genes which cause problems with certain drugs. My result when I then researched my not so good genetic markers which showed up, show I have a gene mutation which makes me a poor metabolizer of 25% of pharmacutical drugs http://en.wikipedia.org/wiki/CYP2D6 and the drugs on that list were lots I have reacted to. The drugs you mentioned there reacting too made me think of drugs those who have this polymorphism tend to react too.

I know that dont help you treat the issue but I myself find it helps me to understand the whys of the issues I have other then be wondering why Ive got so many issues.

...........

ahh I just saw caledonia just said the same, her post wasnt there when I started typing my post.
 

vamah

Senior Member
Messages
593
Location
Washington , DC area
I have a lot in common with you. My first symptom was severe anxiety that led to a diagnosis of OCD. Mine also centered on food contamination -- maybe that is more common than I realized. You don't mention if you have tried any SNRIs. I have had a lot of success with cymbalta in terms of controling anxiety. Some people have real problems with cymbalta, though, so use caution.

I also don't have an official me/cfs diagnosis, although I certainly fit the criteria. I don't really care about being diagnosednwith cfs because I think its a bullshit diagnosis anyway. Its like when doctors describe pain as "ideopathic" because it sounds more scientific than " I have no f**king idea."

I am not convince that I have ME because I have a viral infection that, if i can get rid of it, may be all I need to get better. That may just be wishful thinking on my part though.

Anyway, what I'm saying is, don't feel like you are an imposter if you don't have a diagnosis. Many people here do not and there is still a lot of helpful information.
 

outdamnspot

Senior Member
Messages
924
Thanks for the informative reply, caledonia. I will watch the methylation videos later tonight ..

If you get a 23andme gene test, you can see which detoxification pathways you have mutations on, and which meds you're more likely to have trouble with, or at least it might explain why you've had trouble with certain drugs. The 23andme gene test is also a good idea if you're going to try methylation treatment. Many people here avoid drugs as they've had so many bad reactions.

Would the 23andme test tell me whether or not it's worth pursuing the methylation angle? As I say, money is a bit of a problem at the moment, so I can't really splurge on supplements, but it is my birthday soon, so perhaps I can ask for the 23andme test as a gift.

I did look at the Rich Van Konynenburg 'simplified methylation protocol' link in your signature. I have experimented with methylation before -- I tried methylb12 and the activated folate-form -- but both caused more anxiety, irritability and agitation, even at relatively low doses (500mcg of b12, 200mcg of folate). I do still have some methylfolate left, so could experiment with even smaller doses ..

Do you have any exposure to heavy metals, such as mercury fillings? Metals can cause a wide range of symptoms including mental health problems. Any other toxic exposures such as pesticides, anesthesia, etc.? Are you sensitive to things like paints, markers, car exhaust, new carpet, etc.?

No exposure to heavy metals or toxins, no, and I don't suffer from the sensitivities you describe.

I suggest contacting the disability services in New Zealand and see if you can get disability through them. Then, if so, get started on a claim right away.


I spoke to a friend who tried to claim disability while overseas and it isn't permitted, unfortunately.
 
Messages
15,786
I did look at the Rich Van Konynenburg 'simplified methylation protocol' link in your signature. I have experimented with methylation before -- I tried methylb12 and the activated folate-form -- but both caused more anxiety, irritability and agitation, even at relatively low doses (500mcg of b12, 200mcg of folate). I do still have some methylfolate left, so could experiment with even smaller doses ..
23andMe could help show exactly what vitamins, etc, are needed, and which might need to be taken first. If methylB12 causes problems, you might do better with hydroxoB12, or you might not need B12 at all.
 

Ruthie24

Senior Member
Messages
219
Location
New Mexico, USA
@Valentijn- could you please clarify your statement above? I have recently received my 23 & me results and am still trying to figure out the best way to utilize the info it contains. Do I need to use their data on another format to have it give me the info you are referring to above? I'm not seeing it (per se) on their data itself. Thanks!
 

caledonia

Senior Member
Would the 23andme test tell me whether or not it's worth pursuing the methylation angle? As I say, money is a bit of a problem at the moment, so I can't really splurge on supplements, but it is my birthday soon, so perhaps I can ask for the 23andme test as a gift.

I did look at the Rich Van Konynenburg 'simplified methylation protocol' link in your signature. I have experimented with methylation before -- I tried methylb12 and the activated folate-form -- but both caused more anxiety, irritability and agitation, even at relatively low doses (500mcg of b12, 200mcg of folate). I do still have some methylfolate left, so could experiment with even smaller doses ..

Sort of - the genes are potentials. You could have bad looking genes and be perfectly healthy. But if you had bad looking genes and mental or physical health issues consistent with those genes, I think it would be pretty safe to say you had a methylation problem, and methylation treatment would be helpful.

Ideally, you would want to also do functional testing, but that costs a lot more than the DNA test. The 23andme test is only $99, so I think that's doable for most anybody. I would definitely ask for it for your birthday.

The doses you're quoting are probably still way too high for various reasons. Many of us on here have to start with teeny tiny crumbs and very gradually work towards higher doses. I've had an an anxiety reaction to an amount as small as 1mcg of methylcobalamin! But don't worry, there are ways to work around these issues.
 

caledonia

Senior Member
@Valentijn- could you please clarify your statement above? I have recently received my 23 & me results and am still trying to figure out the best way to utilize the info it contains. Do I need to use their data on another format to have it give me the info you are referring to above? I'm not seeing it (per se) on their data itself. Thanks!

The info you need is not on 23andme. You have to go to geneticgenie.org and run your raw data through there. I show you how in my Methylation Made Easy video series (I think it's #3 Treatment). The link is in my signature.
 
Messages
15,786
@Valentijn- could you please clarify your statement above? I have recently received my 23 & me results and am still trying to figure out the best way to utilize the info it contains. Do I need to use their data on another format to have it give me the info you are referring to above? I'm not seeing it (per se) on their data itself. Thanks!
Basically you need to download the raw data from https://www.23andme.com/you/download/ , and then you can run it through various programs. One such program looks specifically at methylation (albeit in a limited manner) at geneticgenie.org. Another looks for your rare results using a download from http://sourceforge.net/projects/analyzemygenes/ .

Those are both free services, and there are also ones which charge some cash for individualized reports and such. But you can also just post your methylation results, etc, to the SNP sub-forum and people here can probably give some helpful suggestions.
 

outdamnspot

Senior Member
Messages
924
Sort of - the genes are potentials. You could have bad looking genes and be perfectly healthy. But if you had bad looking genes and mental or physical health issues consistent with those genes, I think it would be pretty safe to say you had a methylation problem, and methylation treatment would be helpful.

The doses you're quoting are probably still way too high for various reasons. Many of us on here have to start with teeny tiny crumbs and very gradually work towards higher doses. I've had an an anxiety reaction to an amount as small as 1mcg of methylcobalamin! But don't worry, there are ways to work around these issues.


Okay, I don't want to do too many things at once, so will hold off on the methylation side-of-things until I can get a 23andme test done.

In the meantime, I need to get my anxiety/sleep under control. I have some bulk Inositol arriving next week, so am looking forward to experimenting with that.

I wish I wasn't so sensitive to everything .. even Vitamin C makes me anxious these days; I just hope I can tolerate the Inositol.
 

outdamnspot

Senior Member
Messages
924
23andMe could help show exactly what vitamins, etc, are needed, and which might need to be taken first. If methylB12 causes problems, you might do better with hydroxoB12, or you might not need B12 at all.


Interesting. Would it be of any use to a psychiatrist? And can it help support an ADHD diagnosis (I presume some kind of COMT abnormality might be involved)?
 

outdamnspot

Senior Member
Messages
924
I have a lot in common with you. My first symptom was severe anxiety that led to a diagnosis of OCD. Mine also centered on food contamination -- maybe that is more common than I realized. You don't mention if you have tried any SNRIs. I have had a lot of success with cymbalta in terms of controling anxiety. Some people have real problems with cymbalta, though, so use caution.

I also don't have an official me/cfs diagnosis, although I certainly fit the criteria. I don't really care about being diagnosednwith cfs because I think its a bullshit diagnosis anyway. Its like when doctors describe pain as "ideopathic" because it sounds more scientific than " I have no f**king idea."

I am not convince that I have ME because I have a viral infection that, if i can get rid of it, may be all I need to get better. That may just be wishful thinking on my part though.

Anyway, what I'm saying is, don't feel like you are an imposter if you don't have a diagnosis. Many people here do not and there is still a lot of helpful information.


I haven't tried tried Effexor or Cymbalta, no .. I met with a professor of psychiatrist for a one-off consultation at the start of the year and his suggestion was to try a very low dose of Effexor and work my way up. However, anything noradrenergic tends to royally screw my mood up, so I'm skeptical .. and which is why I was looking into mood stabilizers.

I also have symptoms of a chronic infection (my throat is constantly sore, I have new food intolerances, scalp is always peeling etc.), but I'm so overwhelmed by the supplements, testing, doctor side of things that I never know where to start.
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
What sort of paradoxical reaction did you have to the benzos? People with ME can have an upregulated nervous system. The right dose of benzos will bring it down to normal and the person will have more energy. Having the nervous system in overdrive is exhausting.

This is a good thread on dealing with anxiety:
http://forums.phoenixrising.me/inde...nxiety-symptoms-with-three-supplements.18369/

My personal, non-medically-informed opinion is that if the lithium orotate is helping, it would be worth trying a second dose in the morning.

Sleep is crucial. There is a lot of good information on that here, but I cannot point you to any specific thread. Some of us find that low doses of several sleep aids work better than a standard dose of one.
 

outdamnspot

Senior Member
Messages
924
Benzos make me more agitated and aggressive, and also energize me. I tried relatively low doses and had the same response.

Thanks, I'll try the second LO dose.

I mentioned in the other sleep thread that most aids don't work: Seroquel gives me akathisia, Z-aids cause rebound anxiety, rapid tolerance develops with antihistamines, Melatonin makes me very depressed. Neurontin wasn't good for onset, but helped sleep quality .. though the side-effects were quite awful.

The only thing I haven't tried is Trazodone, which isn't available here, but I'm considering ordering it online.
 

vamah

Senior Member
Messages
593
Location
Washington , DC area
I haven't tried tried Effexor or Cymbalta, no .. I met with a professor of psychiatrist for a one-off consultation at the start of the year and his suggestion was to try a very low dose of Effexor and work my way up. However, anything noradrenergic tends to royally screw my mood up, so I'm skeptical .. and which is why I was looking into mood stabilizers.

I also have symptoms of a chronic infection (my throat is constantly sore, I have new food intolerances, scalp is always peeling etc.), but I'm so overwhelmed by the supplements, testing, doctor side of things that I never know where to start.

You may want to start testing for infectious disease. There seems to be a subset of people with cfs symptoms who have chronic infection by viruses in the herpes family (epstien-barr, hhv6, cmv). These are relatively simple and inexpensive to test for.

I have also read that sudden onset anxiety can be a symptom of lyme disease, but that is much more complicated to get an accurate diagnosis for.
 

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
Have you tried promethazine hydrochloride?
In the UK, it is available over the counter as Sominex.
I do find it to be quite effective - but can result in a bit of a hangover. Perhaps, given your sensitivites, try half or even a quarter first.

I've been told I cannot take noradrenergic things either.

I couldn't cope with amitriptyline, I asked about the more noradrenergic one instead, but my gp said all the ghastly effects I was experiencing were from the noradrenergic effects amitriptyline has.

(I'm not sure about that - because there was not one listed side effect I didn't get - and a few of my own to boot. My gp does lie to me.)