Uncontrollable anxiety as primary PEM symptom?

[stevesayshi]

I guess this is "get to know the disease" day for me, I am asking a few questions like this lately...

I generally get lactic acid buildup and sometimes pain for days if I overdo it physically, but I don't think I've had a severe bedbound type crash. It's more like "I need a recovery day or 2." My exercise tolerance is crap, but still, I can move around enough to get basic stuff done...

On the other hand, if I overdo it mentally or emotionally, I have a week or more where my brain just goes out of control with terrible anxiety bordering on psychosis for no reason. It lasts hours at a time 2 - 3 times a day. Like I will try to tear my own head off, weep, scream crazy things at everybody around me, try to figure out how to kill myself, that sort of pleasant thing. Then I experience something that feels a lot like hypoxia (I used to be a swimmer so I know what that feels like) and get kind of giddy and relaxed, though I am pretty sure brain cells are dying off. During these periods I often can almost forget how to talk. I also tend to run hot (99-100 vs 97 usual) during this. Sometimes cold water dumped on the head can snap me out of it temporarily.

I have learned that panic attacks are related to lactic acid buildup in the brain, maybe it's related? I haven't had such a problem since I started treating with sodium and potassium bicarbonate twice a day. But who knows if that will last, it's only been a couple weeks.

Does this click with anybody? Or are most people's crashes straight up crashes?

 

[soxfan]

I would guess I experience something somewhat similar when I have a crash. I only have crash periods after mental or social exertion which can also include stressful situations.
When it happens to me I will become extremely tearful and can cry easily and for long periods of time. I also at times feel the urge to beat on myself out of sheer frustration.

I get extremely upset and anxious about how "long" this crash will last and the fact that I will be unable to function for a few days. I feel very lucky in the fact that I can exercise to a certain extent with no repercussions as I have been able to all along.

It is the mental exertion that does me in. I also feel as though I am hot but if I take my temp it is usually in the low 97s.

Hope this helps....

 

[minkeygirl]

I have times when something in my brain shifts. Like a switch is flipped and I become insane. I cry, am hyperemotional.. I know it's going on but I can't stop it and I have to wait for the switch to flip again.

I can't link it however, to any kind of exertion.

 

[Sherlock]

I'd take a quick look at serotonin syndrome, even if only to rule it out, especially if your heart rate becomes rapid and/or irregular -- since serotonin syndrome can be fatal.

most especially if you take any medications that affect serotonin
http://www.webmd.com/depression/guide/serotonin-syndrome-causes-symptoms-treatments

which are often used with CFS
http://chronicfatigue.about.com/od/treatingfmscfs/a/serotoninsyndrome.htm

exercise and serotonin: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2077351/

 

[stevesayshi]

I'd take a quick look at serotonin syndrome, even if only to rule it out, especially if your heart rate becomes rapid and/or irregular -- since serotonin syndrome can be fatal.

Interesting. .. but I only use the occasional serotonin precursors as supplements (melatonin, tryptophan, very rarely 5htp) when I am severely sleep deprived. Also, just like when I look at any other neurotransmitter problem, I have half the symptoms and then the complete opposite of the other half.

It is the mental exertion that does me in. I also feel as though I am hot but if I take my temp it is usually in the low 97s.

Hmm this reminds me of something. What type of thermometer do you use? I can get 3 degree F differences depending on whether it's the in-ear infrared thermometer (say 100°) or the under the tongue type (97). Going to post a general discussion on this, maybe.

 

[jann1033]

Yeah, the 3 times drs insisted I tried antidepressants, sinaquane(sp?) Made me exhausted, as did cymbalta and lexapro( like beridden). Effexor make me mentally unstable, angry, suicidal, totally irrational. Nope not trying them again ever.
My" normal" temp with CFS is 97.6 or roughly there. Taken orally, number of times at home or Dr. I don't think I've had a fever over 99.8 for 26 yrs Lol, so drs never say I have a fever even though I actually do. Even with some horrendous infections ( vascular probs.led to bad cellilitis, hospitalized but technically no fever Lol)

 

[Lotus97]

I tend to get those symptoms too.

 

[WillowJ]

I have spells of disordered thinking & depression, and occasionally anxiety, and I usually blame it on cytokine flare, as I typically feel extra flu-ey at the time as well. At times it's been triggered by taking a supplement to boost the immune system.

Separately, migraine can also cause confusion, random emotion such as crying spells, inability to process language, etc. Not everyone gets headache with migraine. A few people have just aura.

I have low temp and trouble running a fever also.

 

[Lotus97]

I think my symptoms for the most part are due to fatigue and inflammation (along with various other things), but for the past 5 days or so it might have been from serotonin syndrome so I'm glad I found this thread.

I'm going to be stopping a few things and I'll see how I feel. How long before I know if that's what is causing my symptoms?

I also stopped my antibiotics a day or two ago because I thought the symptoms were partially due to a herxheimer reaction.

 

[stevesayshi]

I am not a neurotransmitter expert, but I believe increasing dopamine can help lower serotonin faster, or at least block your body's production of it. Tyrosine and phenylalanine are readily available dopamine precursors that I know of, or you could go with the college students' buddy Adderall. Dopaminergics can be a bit anxiogenic though. Low carbs, high protein also helps prevent serotonin from being synthesized, AFAIK (tryptophan only makes it into the brain in large quantities when other aminos are taken into cells by insulin, typically from a glucose spike).

Most of your serotonin is used up daily so it should only take a couple days to see.

 

[IreneF]

Rapid-cycling hypomania?

 

[BadBadBear]

Yeah, I had spells that were like DID for a while (DID = Dissociative Identity Disorder). I ended up going to a psychotherapist, she said I did not have DID. The next one said I do have it. And as I've gotten better over the last several months, it has cleared up and I'm not in therapy anymore. Since I have COMT mutations, I have to wonder if they are expressing when that happens and my neurotransmitters just get all super muddled and messy with all sorts of adrenaline mixed in creating the distress... That's what it feels like, for sure. Just a big loud internal mess and then whoosh, it clears up.

I hope you can find some answers to this. I am sorry for what you are going through. It sounds incredibly distressing.

 

[jann1033]

Interestingly, I had a horrendous problem with anxiety post op a few weeks ago due to meds that of course don't cause anxiety in other people (in fact they normally cause a feeling of well being). But once I changed them, it stopped.

I think cfs brains just are wired so differently, things don't react " normally". Definitely glad that's over though as I was basically a psycho.

 

[SueJohnPat]

I guess this is "get to know the disease" day for me, I am asking a few questions like this lately...

I generally get lactic acid buildup and sometimes pain for days if I overdo it physically, but I don't think I've had a severe bedbound type crash. It's more like "I need a recovery day or 2." My exercise tolerance is crap, but still, I can move around enough to get basic stuff done...

On the other hand, if I overdo it mentally or emotionally, I have a week or more where my brain just goes out of control with terrible anxiety bordering on psychosis for no reason. It lasts hours at a time 2 - 3 times a day. Like I will try to tear my own head off, weep, scream crazy things at everybody around me, try to figure out how to kill myself, that sort of pleasant thing. Then I experience something that feels a lot like hypoxia (I used to be a swimmer so I know what that feels like) and get kind of giddy and relaxed, though I am pretty sure brain cells are dying off. During these periods I often can almost forget how to talk. I also tend to run hot (99-100 vs 97 usual) during this. Sometimes cold water dumped on the head can snap me out of it temporarily.

I have learned that panic attacks are related to lactic acid buildup in the brain, maybe it's related? I haven't had such a problem since I started treating with sodium and potassium bicarbonate twice a day. But who knows if that will last, it's only been a couple weeks.

Does this click with anybody? Or are most people's crashes straight up crashes?

 

[SueJohnPat]

I guess this is "get to know the disease" day for me, I am asking a few questions like this lately...

I generally get lactic acid buildup and sometimes pain for days if I overdo it physically, but I don't think I've had a severe bedbound type crash. It's more like "I need a recovery day or 2." My exercise tolerance is crap, but still, I can move around enough to get basic stuff done...

On the other hand, if I overdo it mentally or emotionally, I have a week or more where my brain just goes out of control with terrible anxiety bordering on psychosis for no reason. It lasts hours at a time 2 - 3 times a day. Like I will try to tear my own head off, weep, scream crazy things at everybody around me, try to figure out how to kill myself, that sort of pleasant thing. Then I experience something that feels a lot like hypoxia (I used to be a swimmer so I know what that feels like) and get kind of giddy and relaxed, though I am pretty sure brain cells are dying off. During these periods I often can almost forget how to talk. I also tend to run hot (99-100 vs 97 usual) during this. Sometimes cold water dumped on the head can snap me out of it temporarily.

I have learned that panic attacks are related to lactic acid buildup in the brain, maybe it's related? I haven't had such a problem since I started treating with sodium and potassium bicarbonate twice a day. But who knows if that will last, it's only been a couple weeks.

Does this click with anybody? Or are most people's crashes straight up crashes?

 

[SueJohnPat]

I have got like this a few times,and it has gotten worse over the last month or so. I am going to have an mri and eeg. I also use bicarb. but I am usually "down" for 3 days.After recovering I feel like my old self and am very careful not to overdo. I was in 2 pem studies over the summer . Did find I have a very low anaerobic threshold. Cut my activity even further but had a really bad episode yesterday. Went to Univ of Penn in Philadelphia with husband. Blood work normal. I have taken ssri 's in the past and they did nothing to help. Saw two psycotheapist 's and was released. It is weird. Univ of Penn has a good rep but they just recommended I follow with psychiatric and neurologic care. I got the bland stare when I mentioned cfs. Have there been any studies on lactic acid, neurotoxins from moving your muscles?
I have no problem if I have a psychiatric issue but this only last a few days, during which while sobbing I know there is no reason for it and I am not psychotic.Then 3 days later I am myself again. I also have had diarrhea and 20 pounds of weight loss. Have been using probiotics, and experimenting with different ones and they have not helped. We sent for Dr Enlanders Maf ? I think probiotic a month or so ago but have not recieved it. I am at a loss.

 

[ukxmrv]

I'm not sure if this is helpful to anyone but Dr Ramsay (ME Royal Free outbreak etc) reported "Emotional lability" in his ME patients and he put this in the part on cerebal activity with a mention of 'encephalitic".

"The third component of the diagnostic triad of myalgic encephalo- myelitis relates to cerebral activity. Impairment of memory and inability to concentrate are features in every case. Many report difficulty in saying the right word and are conscious of the fact that they continue to say the wrong one, for example 'cold' when they mean 'hot'. Others find that they start a sentence but cannot complete it, while some others have difficulty compre- hending the written or spoken word. A complaint of acute hyperacusis is not infrequent; this can be quite intolerable but alternates with periods of normal hearing or actual deafness. Vivid dreams generally in colour are reported by persons with no previous experience of such a phenomenom. Emotional lability is often a feature in a person of previous stable person- ality, while sudden bouts of uncontrollable weeping may occur. Impairment of judgement and insight in severe cases completes the 'encephalitic' component of the syndrome."

http://www.hfme.org/wramsay.htm

 

[SueJohnPat]

I'm not sure if this is helpful to anyone but Dr Ramsay (ME Royal Free outbreak etc) reported "Emotional lability" in his ME patients and he put this in the part on cerebal activity with a mention of 'encephalitic".

"The third component of the diagnostic triad of myalgic encephalo- myelitis relates to cerebral activity. Impairment of memory and inability to concentrate are features in every case. Many report difficulty in saying the right word and are conscious of the fact that they continue to say the wrong one, for example 'cold' when they mean 'hot'. Others find that they start a sentence but cannot complete it, while some others have difficulty compre- hending the written or spoken word. A complaint of acute hyperacusis is not infrequent; this can be quite intolerable but alternates with periods of normal hearing or actual deafness. Vivid dreams generally in colour are reported by persons with no previous experience of such a phenomenom. Emotional lability is often a feature in a person of previous stable person- ality, while sudden bouts of uncontrollable weeping may occur. Impairment of judgement and insight in severe cases completes the 'encephalitic' component of the syndrome."

http://www.hfme.org/wramsay.htm

Thank you for your answer. I started getting really bad bouts with this in July after doing an exercise study. I also did another one (this time a 2 day one at Georgetown with a functional mri) I practiced pharmacy for over 23 years and despite trying "everything" I have been gradually losing ground. I did the studies to "prove" I had something wrong, Cigna cut me off after getting ssi, a common occurrence, unfortunately. I am also suddenly going through menopause have Hashimotis ect. The"mental" symptoms just got so intense all of a sudden. I think it is due to inflammation in my glial cells, or possibly some kind of autoimmune encephalitis., or the onset of menopause which I may try to treat with bioidentical hormones. I got an mri, and am getting an eeg tommorrow. I am trying to rule out neuroimmune encephalitis which does respond to steroids, I am also going to see a psychiatrist because now after 7 years I think I do have "depression" finally but I am 50 years old and have never been like this before. . I saw a great psychologist who helped me cope with the loss of a career I loved and allowing that it is ok for me to be ill. Ironically I was released and feeling well emotionally before these tests, (one at the beginning of July one at the end of August). I do not feel "fatigued' just panicky and scared.

 

[SueJohnPat]

I have times when something in my brain shifts. Like a switch is flipped and I become insane. I cry, am hyperemotional.. I know it's going on but I can't stop it and I have to wait for the switch to flip again.

I can't link it however, to any kind of exertion.

I like your byline- "dont drink the kool-aid"- I was a pharmacists for 23 years but would always someimes "bend" the rules because people are not like lego's- I was often consulted "unofficially "and always encouraged people to research the medications they were on. I did not feel threatened by being corrected by a patient. I looked upon it as a learning experience. Far too many doctors (and pharmacist's) do unfortunately "drink the kool- aid'
and will only "believe" what was taught in medical school,
I think every doctor should be required to take a "history of medicine coarse- less then 100 years ago mercury, arsenis and blood letting were standard "treatments "I prefer a doctor who says "i dont know" but I am always impressed by a doctor who will take the time to learn. Note the terms "practice" of pharmacy and medicine. No one is God.

 

[SueJohnPat]

I am not a neurotransmitter expert, but I believe increasing dopamine can help lower serotonin faster, or at least block your body's production of it. Tyrosine and phenylalanine are readily available dopamine precursors that I know of, or you could go with the college students' buddy Adderall. Dopaminergics can be a bit anxiogenic though. Low carbs, high protein also helps prevent serotonin from being synthesized, AFAIK (tryptophan only makes it into the brain in large quantities when other aminos are taken into cells by insulin, typically from a glucose spike).

Most of your serotonin is used up daily so it should only take a couple days to see.

I was on a gluten free diet for 6 months, prior to the increasing "mental" symptoms. I am on opiates and want to try to get off of them so I can do low dose naltrexone but the gluten free diet made me feel worse . I did lose 20 pounds but and have had a decrease in appetite and chronic diarrhea despite using probiotics ect. I also have unremitting fibro pain.