taniaaust1
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Thanks for the explaination Rich.. my cortisol is quite low so the whole explaination made a heap of sense in my case.
Adrenaline surges?
- Thread starter Lucinda
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Well I have had blood tests, and a few other tests done at the hospital (24 hr ECG, chest xray, two 24 hr urine tests, echocardiogram), and they have come out normal (apart from a fast heart rate) so I'm guessing that if I have Hashimoto's Disease then not all of my tests would have been 'normal'? Or would they? In any case, I have never been told I have any thyroid issues.
I don't think my doctor will refer me to a rheumatologist unfortunately. As far as doctors are concerned, I have had all the tests they see as relevant, they have come out clear, and that is the end of it. I was diagnosed with CFS, and a possible anxiety disorder (my consultant thought OCD due to my compulsion to exercise when I am in this 'wired' state). Thing is this problem with being 'wired' is not the same as anxiety, so I reject this diagnosis, but as far as doctors ar concerned I'm just anxious, nothing more, end of.
I don't think my doctor will refer me to a rheumatologist unfortunately. As far as doctors are concerned, I have had all the tests they see as relevant, they have come out clear, and that is the end of it. I was diagnosed with CFS, and a possible anxiety disorder (my consultant thought OCD due to my compulsion to exercise when I am in this 'wired' state). Thing is this problem with being 'wired' is not the same as anxiety, so I reject this diagnosis, but as far as doctors ar concerned I'm just anxious, nothing more, end of.
Mya Symons
Mya Symons
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Yes, I would think they would have thought of doing the TSH (thyroid stimulating hormone) test. Primary physicians usually do one of those in yearly exams. I think RichVanks has the best answer as to what is going on.
Hi, Lucinda.
Sorry, the correct url for the Yasko forum is www.ch3nutrigenomics.com
I would not say that Dr. Yasko's book is simple. It might be best to go to the forum and read the introductory information there.
I can't comment on what is safe or not for individuals, because I am not a licensed physician and am not familiar with all the details of your case.
I'm familiar with Dr. Myhill's treatment of the methylation cycle. Yes, the supplements are somewhat different, but they address the same part of the biochemistry. Several people have written me that they have been helpful to them. Some of the differences are due to what was available in the UK when she started with this treatment, and some are based on her own thinking.
Best regards,
Rich
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The basic thyroid testing (done by most docs) is inadequate according to some experts. (Similar to, how they have those Lyme tests that are inadequate according to the Lyme docs.)
I know how it is hard to get serious testing. Docs think my thyroid is fine based on those basic tests. But one thing you can do is (maybe) find a doc to prescribe that natural version of thyroid, or take some OTC supplement that's similar. As an experiment to see if that makes you feel better. It's an option.
I thought it made me feel better, but honestly I am too confused and overwhelmed to keep up with supplements properly and test them out.
I agree with the adrenaline/wired feel yet being exhausted. I guess mine is different. Mine is lots of "little" surges through the day. They feel so powerful and overwhelming but I tend to be crashing within minutes, so that's why I said little.
They are horrible and frustrating and I always thought of it as my "flight or fight" system being activated WAY too easily. It's not supposed to activate unless it's a life threat or something major, but mine is that way half the time when anyone talks about anything remotely bad or exciting. (They say, "You won't believe what just happened!")
I think people are "allergic" to stress chemicals in their body and are supposed to exercise after any adrenaline release, and that we are much more sensitive. Especially because like I said, I am getting them released all the time.
I do consider myself to have an anxiety disorder but think it is because my body can't cope otherwise. To me, having to climb the stairs might be similar to telling a healthy person that they need to run up the hill within 2 minutes or they're going to lose something important. They would go into an adrenaline mode for that, and I would for just simple stair climbing.
I'm sure there is more I am forgetting, that I wanted to say.
I know how it is hard to get serious testing. Docs think my thyroid is fine based on those basic tests. But one thing you can do is (maybe) find a doc to prescribe that natural version of thyroid, or take some OTC supplement that's similar. As an experiment to see if that makes you feel better. It's an option.
I thought it made me feel better, but honestly I am too confused and overwhelmed to keep up with supplements properly and test them out.
I agree with the adrenaline/wired feel yet being exhausted. I guess mine is different. Mine is lots of "little" surges through the day. They feel so powerful and overwhelming but I tend to be crashing within minutes, so that's why I said little.
They are horrible and frustrating and I always thought of it as my "flight or fight" system being activated WAY too easily. It's not supposed to activate unless it's a life threat or something major, but mine is that way half the time when anyone talks about anything remotely bad or exciting. (They say, "You won't believe what just happened!")
I think people are "allergic" to stress chemicals in their body and are supposed to exercise after any adrenaline release, and that we are much more sensitive. Especially because like I said, I am getting them released all the time.
I do consider myself to have an anxiety disorder but think it is because my body can't cope otherwise. To me, having to climb the stairs might be similar to telling a healthy person that they need to run up the hill within 2 minutes or they're going to lose something important. They would go into an adrenaline mode for that, and I would for just simple stair climbing.
I'm sure there is more I am forgetting, that I wanted to say.
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Oh, GABA helps me usually. I should be taking that more. But it's sort of... well, it gets rid of the tense icky feel a lot, but then it's harder to get things done, it makes me a bit too relaxed? Good to take with another supplement or med I guess. I haven't found myself a good balance.
Also I feel like an SNRI would be good and not bad like you were thinking. In my case anyway. I do not have experience taking an SNRI but I do have experience with another type of med that keeps more acetylcholine in muscles (and my brain too I believe) which helps. So maybe I am contradicting myself (not surprising) but I think my body has an issue of breaking it down too fast. So without the med, my body just makes more and more adrenaline or whatever chemicals and they build up and cause the wired feel.
Oh also I feel like my body got this way from learning it and growing up with the life patterns. So, some of my beliefs about myself are in line with what psychologists and other docs might say. In my case I was exposed to a lot of high stress situations on and off when I was a baby and child. But I guess I am also genetically predisposed or something. And I think the CFIDS/ME is making it all more extreme and made it so I don't just heal.
Another strange thing is somewhere in the midst of the uncomfortable adrenaline surge & exhaustion, there is this certain balance where I have good clarity of thought and good motivation. It is weird to be all tense/icky and exhausted but also have the positive effects. Sometimes I seem to need that state... I mean, sometimes if I don't get it for a while then I get bothered by not having that clarity and whatever. I think without the CFIDS/ME maybe the surge would not feel nearly as uncomfortable and the exhaustion would be minor and short lasting too.
My experiences may be different and odd. I supposedly have cyclothymia which is like a rapid bipolar without going as extreme either way. But do let me know if what I said makes sense?
Also I feel like an SNRI would be good and not bad like you were thinking. In my case anyway. I do not have experience taking an SNRI but I do have experience with another type of med that keeps more acetylcholine in muscles (and my brain too I believe) which helps. So maybe I am contradicting myself (not surprising) but I think my body has an issue of breaking it down too fast. So without the med, my body just makes more and more adrenaline or whatever chemicals and they build up and cause the wired feel.
Oh also I feel like my body got this way from learning it and growing up with the life patterns. So, some of my beliefs about myself are in line with what psychologists and other docs might say. In my case I was exposed to a lot of high stress situations on and off when I was a baby and child. But I guess I am also genetically predisposed or something. And I think the CFIDS/ME is making it all more extreme and made it so I don't just heal.
Another strange thing is somewhere in the midst of the uncomfortable adrenaline surge & exhaustion, there is this certain balance where I have good clarity of thought and good motivation. It is weird to be all tense/icky and exhausted but also have the positive effects. Sometimes I seem to need that state... I mean, sometimes if I don't get it for a while then I get bothered by not having that clarity and whatever. I think without the CFIDS/ME maybe the surge would not feel nearly as uncomfortable and the exhaustion would be minor and short lasting too.
My experiences may be different and odd. I supposedly have cyclothymia which is like a rapid bipolar without going as extreme either way. But do let me know if what I said makes sense?
Hi Lucinda, i know this is an old post but was just reading through. You can get tested privately in the U.K for Hashimotos. your GP wont have done it. You can do it through Thyroid U.K website. http://www.thyroiduk.org.uk/tuk/pages/private_tests/cambridge.html I had it done recently. its not too expensive, they send you the kit and you just tak a few drops of your own blood from the end of your finger (its really easy). Mine was negative, but it might be worth a try just to rule out.
Th more i read on here the more i realise that i also am the wired but tired type with excitotoxicity. It would be great to get to the bottom of it and find some relief.
xx Justy
Th more i read on here the more i realise that i also am the wired but tired type with excitotoxicity. It would be great to get to the bottom of it and find some relief.
xx Justy
Hey Justy
Thanks for that hun. And I was glad to see this thread re-visited as this problem is still driving me nuts! The Perrin Technique has so far made it worse. I don't know what that means. I'm guessing that because Perrin makes you more toxic before it makes you less toxic, then this problem is somehow related to toxicity.
Incidently, I tried low dose Amitriptyline a few days a go to try and help this problem. My doctor said it may help as it helps with anxiety and calms people down. I was dubious as I know this problem is not the same as anxiety but I was desperate so I tried it. And yep, I was right to be dubious. It made the problem worse! It was weird, I became very emotionally calm, but really really wired/agitated/restless at the same time. Proving yet again that this wired problem and emotional anxiety are different. Plus I had other nasty side effects.
I'll look into the test you mentioned. I'm also experimenting with supplements. I found L-Theanine helped a bit for a few weeks, and then stopped helping. And valarian and magnesium (I take tablets and rub in oil) help a bit but not loads. I may try GABA next.
I would love to do the methylation stuff, but am not well enough to get my head around it. I can read conversational threads when I'm not too ill, but anything complicated and my brain freezes and I can't read it no matter how hard I try. So frustrating. I used to be a top student, now I can't even follow documentaries as they are too complicated and I get lost and confused.
- Lucinda xxx
Thanks for that hun. And I was glad to see this thread re-visited as this problem is still driving me nuts! The Perrin Technique has so far made it worse. I don't know what that means. I'm guessing that because Perrin makes you more toxic before it makes you less toxic, then this problem is somehow related to toxicity.
Incidently, I tried low dose Amitriptyline a few days a go to try and help this problem. My doctor said it may help as it helps with anxiety and calms people down. I was dubious as I know this problem is not the same as anxiety but I was desperate so I tried it. And yep, I was right to be dubious. It made the problem worse! It was weird, I became very emotionally calm, but really really wired/agitated/restless at the same time. Proving yet again that this wired problem and emotional anxiety are different. Plus I had other nasty side effects.
I'll look into the test you mentioned. I'm also experimenting with supplements. I found L-Theanine helped a bit for a few weeks, and then stopped helping. And valarian and magnesium (I take tablets and rub in oil) help a bit but not loads. I may try GABA next.
I would love to do the methylation stuff, but am not well enough to get my head around it. I can read conversational threads when I'm not too ill, but anything complicated and my brain freezes and I can't read it no matter how hard I try. So frustrating. I used to be a top student, now I can't even follow documentaries as they are too complicated and I get lost and confused.
- Lucinda xxx
Hi Lucinda, i really do think that the best way forward would be to have some testing done. Either the methylation panel or Dr M's mito dysfunction one. I know money is a problem, but the mito test would give you some very specific recommendations or supplements etc, withput you having to think about it too much. My best gains have come from targeted supplements advised by Dr.M. OTHERS COULD ALWAYS HELP YOU WITH UNDERSTANDING THE RESULTS (OOPS SORRY) i wasted a lot of time doing general things that others tried, rather than taking the things i was actually deficient in. It would also give you an idea of wethr toxicity is a problem for you.
I know what you mean about having treatments that made you worse. I couldnt tolerate massage at one point. i think like you it was releasing toxins that my body just couldnt deal with. I had the worse cash i have ever had after massage and couldnt even dress myself for a while. i still havnt tried it again - but i think i woud handle it a bit better now. I dont know with Perrin, but i would be very careful with anything that makes you feel worse, especially as you are so vulnerable at the moment still.
Hugs xx Justy.
I know what you mean about having treatments that made you worse. I couldnt tolerate massage at one point. i think like you it was releasing toxins that my body just couldnt deal with. I had the worse cash i have ever had after massage and couldnt even dress myself for a while. i still havnt tried it again - but i think i woud handle it a bit better now. I dont know with Perrin, but i would be very careful with anything that makes you feel worse, especially as you are so vulnerable at the moment still.
Hugs xx Justy.
soxfan
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I have been having this problem for years but just recently it has become worse. I feel as though I have the adrenaline surging all day but I actually don't feel it until I sit down or lay down. Resting has become nearly impossible for me. I am not sure anyone else has this problem but when I have to lay down in the afternoons my body WILL not rest or relax. It feels as though my heart is beating very fast ( it isn't) and almost like I can feel the blood surging through my body which then makes me feel like my body is either swaying or moving with each heart beat. It can seem like I could sleep for years but yet my body is never ever in a restful state. I have tried ativan hoping it would help with this wired up feeling but it doesn't do a thing for this feeling..just makes me a little drowsy.
It is almost as if my body has completely lost the ability to rest/relax. I can even feel it when I watch tv or just sit and read a book. I am already on thyroid meds so I know there isn't a problem with that. I has truly become one of my worse symptoms today...along with the fatigue and nerve pain.
Kim
It is almost as if my body has completely lost the ability to rest/relax. I can even feel it when I watch tv or just sit and read a book. I am already on thyroid meds so I know there isn't a problem with that. I has truly become one of my worse symptoms today...along with the fatigue and nerve pain.
Kim
Justy - Yes I was going to have the mito test once my backpayments came through for my benefits. However it's been nearly a month since I won my appeal and still no backpayments! You're right though, I need testing done.
Soxfan - Yes I get exactly that soxfan, and have had it to various degrees for years! I do feel at my worst when I try to rest. I just can't relax and yes it feels like my heart is pounding and my blood is rushing, etc. It feels like there is this inner torment. It means I can't pace properly as I can't relax! Which means that my other symptoms get worse.
This problem was just getting worse and worse with me until I tried acupuncture. Acupuncture has helped a lot, though it hasn't got rid of the problem. It's just reduced it. From what I understand, from a Chinese Medicine point of view, this problem is caused by 'heat in the heart'. Acupuncture treatments and Chinese Herbal medicine that reduces heat in the heart helps calm it down. However I don't think it gets to the root of the problem. What I notice is that I feel loads calmer and more settled and able to relax after an appointment, but then it will gradually return again. There is still some cumulative effect that you get though. I was actually doing well with acupuncture, and this problem was reducing a lot, until I started Perrin treatments. Then it got bad again (but certainly not as bad as it has been in the past).
Soxfan - Yes I get exactly that soxfan, and have had it to various degrees for years! I do feel at my worst when I try to rest. I just can't relax and yes it feels like my heart is pounding and my blood is rushing, etc. It feels like there is this inner torment. It means I can't pace properly as I can't relax! Which means that my other symptoms get worse.
This problem was just getting worse and worse with me until I tried acupuncture. Acupuncture has helped a lot, though it hasn't got rid of the problem. It's just reduced it. From what I understand, from a Chinese Medicine point of view, this problem is caused by 'heat in the heart'. Acupuncture treatments and Chinese Herbal medicine that reduces heat in the heart helps calm it down. However I don't think it gets to the root of the problem. What I notice is that I feel loads calmer and more settled and able to relax after an appointment, but then it will gradually return again. There is still some cumulative effect that you get though. I was actually doing well with acupuncture, and this problem was reducing a lot, until I started Perrin treatments. Then it got bad again (but certainly not as bad as it has been in the past).
soxfan
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Lucinda- I actually thought I was going crazy with this symptom...I try to describe it to my husband but it is impossible. YOU know exactly what I am feeling. It does feel as though my insides are in distress and it is the worse feeling. It has become worse for me through the years I think because I know resting will be of little use but I just have to lie down or else collapse. I am sorry you have this too but it is so nice to have someone know what I am feeling....
I actually feel it has become more of a problem now that the holidays are here and I always stress about them and worry how I will be feeling and I am talking a LOA from work and that has also caused me some distress but I do have it ALL the time...
I actually feel it has become more of a problem now that the holidays are here and I always stress about them and worry how I will be feeling and I am talking a LOA from work and that has also caused me some distress but I do have it ALL the time...
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Me too. It's very disruptive to my sleep and concentration and social life and... what doesn't it interfere with 
Soxfan - Yes I have a hard time to describe it. I tend to describe it to people as an 'agitation', though really the word isn't strong enough. 'Torment' is a better word for it, but I fear if I say that people will think I'm exaggerating. I'm not. When this symptom was at it's worse a few years back, I spent my whole life alternating between compulsively exercising, as I couldn't stay still never mind lie down and rest, to completely collapsing and being unable to move and in huge amounts of pain/discomfort. And I'd hardly sleep at all. I can't begin to describe what hell it was.
I think the fact that nobody understood made the problem worse. It wasn't until I finally went to my acupuncturist that I felt like someone in the world could see what I was going through. In fact, he was so alarmed by what he felt when he took my pulse that he ordered me to hospital as, as he later revealed, he thought I may have a fatal heart condition. As it turned out, from the hospital's point of view there was nothing wrong with me, apart from having a fast heart rate. And they just said that was just due to anxiety.
As I say, it did get gradually better with acupuncture, and after quite a while, I started to become well enough to come on ME forums. And have been so releaved to discover I'm not the only one that gets this! There really as others. I suspect that it is a certain 'subtype' of ME patients that get this problem. But I'm sure you'll notice if you read this thread and a few others on here, Soxfan, that there are others. You are most definately not alone.
If ever you want to talk about this problem to someone who understands, feel free to PM me. And same goes for anyone else. I wish I'd have had someone to talk to years ago about this problem.
SickofSickness - yes it def distrupts my sleep and concentration too. In fact, the only reason I can think clearly and post on here at the moment is because I saw my acupuncturist yday. I was going to stop seeing him whilst I tried Perrin, but this problem got so bad I couldn't cope and needed acupuncture. Thanks to the acupuncture I am now getting a much needed break from the symptom, so have took advantage of the opportunity and come on here. And yes I've ended up with pretty much no social life. Being with people makes this problem worse. As a result, I probably have a friend round to my house for about an hour or so about once a month. I can't do much more than that. So frustrating - I had a decent social life before all this started!
I think the fact that nobody understood made the problem worse. It wasn't until I finally went to my acupuncturist that I felt like someone in the world could see what I was going through. In fact, he was so alarmed by what he felt when he took my pulse that he ordered me to hospital as, as he later revealed, he thought I may have a fatal heart condition. As it turned out, from the hospital's point of view there was nothing wrong with me, apart from having a fast heart rate. And they just said that was just due to anxiety.
As I say, it did get gradually better with acupuncture, and after quite a while, I started to become well enough to come on ME forums. And have been so releaved to discover I'm not the only one that gets this! There really as others. I suspect that it is a certain 'subtype' of ME patients that get this problem. But I'm sure you'll notice if you read this thread and a few others on here, Soxfan, that there are others. You are most definately not alone.
If ever you want to talk about this problem to someone who understands, feel free to PM me. And same goes for anyone else. I wish I'd have had someone to talk to years ago about this problem.
SickofSickness - yes it def distrupts my sleep and concentration too. In fact, the only reason I can think clearly and post on here at the moment is because I saw my acupuncturist yday. I was going to stop seeing him whilst I tried Perrin, but this problem got so bad I couldn't cope and needed acupuncture. Thanks to the acupuncture I am now getting a much needed break from the symptom, so have took advantage of the opportunity and come on here. And yes I've ended up with pretty much no social life. Being with people makes this problem worse. As a result, I probably have a friend round to my house for about an hour or so about once a month. I can't do much more than that. So frustrating - I had a decent social life before all this started!
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GABA does help me. (Especially with other vitamins?) Magnesium? Then again, how I respond usually is different from the norm.
Also if I got good sleep, I am better. It's a catch-22. Hard to get good sleep when I have this symptom.
Also if I got good sleep, I am better. It's a catch-22. Hard to get good sleep when I have this symptom.
Hello Lucinda,
Have you tried GABA yet?
I heard 5HTP can help a lot too.
When I'm "tired but wired" I take acetaminophen (Paracetamol). In the US that's Tylenol.
It really helps me to fall asleep.
When I'm too tired but wired I add Valerian.
In extreme cases it does not do much effect but it still easier than without it
Have you tried GABA yet?
I heard 5HTP can help a lot too.
When I'm "tired but wired" I take acetaminophen (Paracetamol). In the US that's Tylenol.
It really helps me to fall asleep.
When I'm too tired but wired I add Valerian.
In extreme cases it does not do much effect but it still easier than without it
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5HTP makes me worse.
heapsreal
iherb 10% discount code OPA989,
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after reading through this thread it does seem alot like adrenal fatigue, cortisol not functioning properly, not just low but high and low at the wrong times. Cortisol helps stabilze sugar levels and promotes immune health only large doses cause immunosuppression. Also its hard to measure as its very up and down depending on whats going on in your life. Also if u have thyroid problems that arent being helped with thyroid meds, this is a sign of poor cortisol production. Im harping alot about the hormone pregnenolone on my threads as its really helping me, but it is a safer and better long term treatment for hormonal and adrenal problems then hydrocortisol. It has a flow down effect to all our other hormones and neurotransmitters and has a balancing effect on them.
I think if anyone has had cfs with chronic ongoing infections for any length of time, they are then going to have adrenal fatigue as well and this makes it difficult for your body to mount any type of defense or recovery. I think those who are xmrv and not responding treatment the way they hoped could possibly be in this group with adrenal fatigue. Excess hormones may promote xmrv but having your hormones within the right ranges is going to be helpful in fighting infections. also those that end up being negative to xmrv probably have adrenal fatigue from other causes/infections. I think its going to be a holistic approach to treating cfs, even though old dr tetlbum(spelling???) seems to be chasing the dollar, his basics of the shine protocol makes sense - sleep/hormones/infections/nutrition/exercise. But hormones need to be used under a docs supervision as regular testing is necessary to tweek things.
cheers!!!
I think if anyone has had cfs with chronic ongoing infections for any length of time, they are then going to have adrenal fatigue as well and this makes it difficult for your body to mount any type of defense or recovery. I think those who are xmrv and not responding treatment the way they hoped could possibly be in this group with adrenal fatigue. Excess hormones may promote xmrv but having your hormones within the right ranges is going to be helpful in fighting infections. also those that end up being negative to xmrv probably have adrenal fatigue from other causes/infections. I think its going to be a holistic approach to treating cfs, even though old dr tetlbum(spelling???) seems to be chasing the dollar, his basics of the shine protocol makes sense - sleep/hormones/infections/nutrition/exercise. But hormones need to be used under a docs supervision as regular testing is necessary to tweek things.
cheers!!!
Jeffy14 - Yes I tried GABA. First time I took it it had a weird effect. My throat felt tingly and uncomfortable, and then I started to feel very very sedated, but not in a good way. I just felt...weird.
However, whenever I've took it since it has had little effect! Very odd.
I may try it again at a higher dose.
I tried 5HTP but it had weird effects on me. I felt disorientated and dizzy and got heart palpitations. And it didn't help this wired problem.
As for paracetamol - that's a painkiller in the UK? Not sure how that would help. In any case I do take them for pain but they haven't helped this problem.
I do find valerian helps a little bit. It's not a miracle, but it is kinda soothing. I tend to take it at night.
However, whenever I've took it since it has had little effect! Very odd.
I may try it again at a higher dose.
I tried 5HTP but it had weird effects on me. I felt disorientated and dizzy and got heart palpitations. And it didn't help this wired problem.
As for paracetamol - that's a painkiller in the UK? Not sure how that would help. In any case I do take them for pain but they haven't helped this problem.
I do find valerian helps a little bit. It's not a miracle, but it is kinda soothing. I tend to take it at night.
Heapsreal - yes I had a naturopath who thought it was an adrenal problem. However, my acupuncturist disagrees. In any case, I had adrenal problems tested by the NHS and all my tests came out normal. My tests for thyroid function also came out fine. However, the NHS is known for being a bit rubbish when it comes to dealing with ME patients. So I'm going to have testing done with the private doctor, Dr Myhill. Adrenal stress profile is one of the tests I want done as I do think it is possible I have adrenal issues.