Brainfog

[Guest guest]

- You finished the meds right? Is the hep c gone or do they know yet?

I have a little brain fog but nothing much more than I had before I started the

meds.

[Guest guest]

- You finished the meds right? Is the hep c gone or do they know yet?

I have a little brain fog but nothing much more than I had before I started the

meds.

[Guest guest]

Hi ,

Are you saying your TSH is 8? What is your lab's normal range? 8

sounds high. Just borderline, but still high. However, not all labs

normal ranges are the same. 8 would be just over the high normal by

my lab, but for me, I would be feeling terrible. When my TSH was 3.36

I was very fatigued and easily confused, no memory, depressed, dry

skin and dry, brittle hair, and no matter what I could not loose

weight. My endocrinologist did say that he thinks most women feel

better with lower TSH than men do though. I think you probably need

to give yourself more time to get all the medicines out of your

system though too. 20 days is not that long. Give it a bit more time.

Claudine

__________________________________________________

[Guest guest]

Hi ,

Are you saying your TSH is 8? What is your lab's normal range? 8

sounds high. Just borderline, but still high. However, not all labs

normal ranges are the same. 8 would be just over the high normal by

my lab, but for me, I would be feeling terrible. When my TSH was 3.36

I was very fatigued and easily confused, no memory, depressed, dry

skin and dry, brittle hair, and no matter what I could not loose

weight. My endocrinologist did say that he thinks most women feel

better with lower TSH than men do though. I think you probably need

to give yourself more time to get all the medicines out of your

system though too. 20 days is not that long. Give it a bit more time.

Claudine

__________________________________________________

[Guest guest]

Willem...

Little behind on mail here so someone has probably responded to this by

now.

There are studies that Claudine has posted to the list that there is now

research being conducted showing that Hep C does affect the brain. Can't

give you the details (darn brain fog <g>) but am pretty sure that was

posted prior to my little computer crash and I should have the message

saved I'll look for it and send it to you off list.

Tatezi

willem landstra wrote:

> HI.My thyroid is okay.8.Now 20 days of treatment.The brainfog is not

> going away.Questions:Is the brainfog caused by treatment or is it a

> HEP-C related issue?.Can I do anything about it?.Of all the

> side-effects this one is the worst.All suggestions welcome..

>

>

>

[Guest guest]

Willem...

Little behind on mail here so someone has probably responded to this by

now.

There are studies that Claudine has posted to the list that there is now

research being conducted showing that Hep C does affect the brain. Can't

give you the details (darn brain fog <g>) but am pretty sure that was

posted prior to my little computer crash and I should have the message

saved I'll look for it and send it to you off list.

Tatezi

willem landstra wrote:

> HI.My thyroid is okay.8.Now 20 days of treatment.The brainfog is not

> going away.Questions:Is the brainfog caused by treatment or is it a

> HEP-C related issue?.Can I do anything about it?.Of all the

> side-effects this one is the worst.All suggestions welcome..

>

>

>

[Guest guest]

Willem-

Are you sleeping enough? That can be a big part of brain fog. Us Heppers

tend to have trouble sleeping. That is also a big part of the fatigue/brain

fog in CHronic Fatigue Syndrome. Pain can be a culprit in not letting us

sleep well. Are you hurting, even mildly? Chronic pain can keep you from

getting the necessary deep sleep you need, so that even if you sleep, it

could be a light sleep with lots of quick awakenings (that won't be

remembered) to disrupt the sleep.

As for supplements, people have had luck with MSM, co-Q10, Malic acid,

magnesium (Not in magnesium oxide form-magnesium citrate is better) or even

just a good multi vitamin/mineral (w/out iron). Herbal sleeping aids such

as valerian, hops, and passion flower could be of help if lack of sleep is

causing your brain fog.

gail

From: " willem landstra " <wmland@...>

Reply-Hepatitis C

Date: Mon, 13 May 2002 09:18:05 +0200

" Groep " <Hepatitis C >

Subject: Brainfog

Hi.Now 22 days off treatment.My thyroid has been checked and ok.The number

is 8 on a scale 5-50.Claudine thougt it was too high so I called the Doc

again and he said it was ok.In the US they might hve a different way of

testing,different scale.The brainfog it getting worse,it really worries me.

[Guest guest]

Hi Willem...

Brain fog sometimes takes quite a while to clear after treatment, but

there are also studies that it is related to Hep C. And since your

thyroid is normal according to Hollands testing system, guess we can't

blame it on that. You said normal there was 5-50...here the normal is

..5-5.0.

I read a post where someone suggested you try valerian for sleep.

Recently I have been reading some studies that valerian is extremely

hard on the liver...and is not recommended for people with liver

problems. I used to take valerian to aid in sleep, but after about the

third article I read, I stopped taking it. I belong to a lot of herbal

lists / newsletters and try to keep up to date on findings concerning

herbs since I have a strong belief in the gifts of mother earth being

able to aid our health. FYI...kava kava has also been found to be

detrimental to the liver.

Tatezi

willem landstra wrote:

> Hi.Now 22 days off treatment.My thyroid has been checked and ok.The

> number is 8 on a scale 5-50.Claudine thougt it was too high so I

> called the Doc again and he said it was ok.In the US they might hve a

> different way of testing,different scale.The brainfog it getting

> worse,it really worries me.My short memory is bad,put something

> somewhere and I can.t remember where I put it,hve to think hard and

> then I remember.Working with my computer i,photo edeting with Adobe is

> also difficult.When I was on treatment it was less.What is brainfog

> and is it due to the Hep C or treatment.Is it permanent or

> temporarily.Can I do something about it,vitamines,drugs,way of

> live.When it.s a warm day,yes we hve warm days in Holland

> sometime,it.s worse.I hope your short memory is not so bad as to

> remember this message,LOL,and advise.Have a nice day,Oh the sun is

> shining so it will not be a nice day for me,well mabye.

>

>

>

[Guest guest]

Hi Willem...

Brain fog sometimes takes quite a while to clear after treatment, but

there are also studies that it is related to Hep C. And since your

thyroid is normal according to Hollands testing system, guess we can't

blame it on that. You said normal there was 5-50...here the normal is

..5-5.0.

I read a post where someone suggested you try valerian for sleep.

Recently I have been reading some studies that valerian is extremely

hard on the liver...and is not recommended for people with liver

problems. I used to take valerian to aid in sleep, but after about the

third article I read, I stopped taking it. I belong to a lot of herbal

lists / newsletters and try to keep up to date on findings concerning

herbs since I have a strong belief in the gifts of mother earth being

able to aid our health. FYI...kava kava has also been found to be

detrimental to the liver.

Tatezi

willem landstra wrote:

> Hi.Now 22 days off treatment.My thyroid has been checked and ok.The

> number is 8 on a scale 5-50.Claudine thougt it was too high so I

> called the Doc again and he said it was ok.In the US they might hve a

> different way of testing,different scale.The brainfog it getting

> worse,it really worries me.My short memory is bad,put something

> somewhere and I can.t remember where I put it,hve to think hard and

> then I remember.Working with my computer i,photo edeting with Adobe is

> also difficult.When I was on treatment it was less.What is brainfog

> and is it due to the Hep C or treatment.Is it permanent or

> temporarily.Can I do something about it,vitamines,drugs,way of

> live.When it.s a warm day,yes we hve warm days in Holland

> sometime,it.s worse.I hope your short memory is not so bad as to

> remember this message,LOL,and advise.Have a nice day,Oh the sun is

> shining so it will not be a nice day for me,well mabye.

>

>

>

[Guest guest]

Hi Willem,

--- willem landstra <wmland@...> wrote:

..My thyroid has been checked and ok. The

> number is 8 on a scale 5-50.Claudine thougt it was too high so I

> called the Doc again and he said it was ok.In the US they might hve

> a different way of testing,different scale.

That isn't even CLOSE to any scale any lab here uses for the " TSH "

test. Ask your doctor what test he did - exactly. Did he test your

" TSH " (Thyroid Stimulating Hormone?) THAT is what needs to be tested.

It is not actually a thyroid hormone, but is produced in the

pituitary gland, so it's not in the thyroid test panel. If the

thyroid begins to malfunction, this hormone, the 'thyroid stimulating

hormone' will begin to stimulate the thyroid to produce more of the

actual thyroid hormones. THIS test (TSH) is usually the first sign

that something wrong is going on in your thyroid gland because it is

stimulating the thyroid gland so those hormones will very often

appear normal. I don't know about where you are, but here in the US

the " TSH " test is NOT part of the Thyroid 'panel', but is a test that

must be ordered separately. And many times a doctor (non-specialist

in these types of things) will not realize this or will forget and

the test is not done. A 'Thyroid Panel' usually will consist of

testing levels of T-4, T-3, and T-7, but a 'Thyroid Stimulating

Hormone' test needs to be done too. It is the most important test,

and usually once a thyroid disorder is diagnosed and you get on

medication your thyroid function is monitored just by testing this

other hormone, the 'TSH'. Make sure THIS is the test your doctor did.

If it does turn out that your thyroid is fine, I still say give it a

bit more time, rest, drink lots of water and eat well. Even if you

remain free of the virus it can still take a long time for all the

effects of both medications and the virus to wear off. I don't know

if ANYONE knows how long it can take for the mental problems of HCV

to go away. They are just now realizing that HCV can be a cause of

emotional problems and memory problems so this is a new area of

research. In the mean time I would try to compensate - make lists,

make notes to yourself, ALWAYS set your keys down in the exact same

place, things like that.

Good luck!

Claudine

__________________________________________________

[Guest guest]

Willem...

I'm so glad you called to double check on your test results. I sorta

thought that blood tests would be standardized across the world but when

you said they'd told you 5-50, I figured I was wrong in that

assumption.. It didn't make sense to me that different countries would

have different standards for blood results, but hey, lots of things are

different in other countries. After all, even Cuba provides healthcare

for all the people...but america, the supposedly civilized country,

doesn't. (Oops, sorry...can you tell that this is a sore spot with me?)

Normal TSH is different in all people...some people tolerate the high

end of normal while others need to be at the low end. Even when we got

my TSH down from 110 to 5.0, I still didn't feel right and asked if we

could increase my synthroid dosage to bring it down to the low end. When

it got to 1.5, I was feeling like my old self again. So if they get it

down to 5.0 and you still aren't feeling right, ask them to bring it

down to a lower level.

Isn't it wonderful having this list to bounce things off of? If it

weren't for this list, I don't know how I would have made it through

treatment...and even the support during the stress of my almost 6 months

of unemployment has been a life line to me.

Blessings...or as they say in Holland, Liefs....

Tatezi

After having been off synthroid for several months, the brain fog was

horrible..it still is and I've been back on synthroid for 3 weeks now.

Personally I think brain fog is the worst part of all this. I've found

it very hard to not be able to learn things like I used to, to not be

able to focus, to forget things all the time, etc. You do learn to work

around it with lists and things, but list don't help focusing and the

ability to learn things quickly. I used to do a lot of graphics and web

work...now it seems that I can't focus long enough to get anything done.

Very very frustrating.

willem landstra wrote:

> HI.When claudine thought my thyroid level was too high I called the

> Doc,got his secretary and he said it was ok.Today Tat told me that the

> level in the US is 0.5-5.I called again and this time I got the JP on

> the line,he told me it was too HIGH.I asked him why he never called me

> to tell me to come in.The stupid secretary made a mistake,he thought

> the level was between 5 and 50,then 8 is ok.Tomorrow I see the Doc and

> see what we are going to do about it.THANK YOU TAT and CLAUDINE for

> the info..

>

>

>

[Guest guest]

Willem...

I'm so glad you called to double check on your test results. I sorta

thought that blood tests would be standardized across the world but when

you said they'd told you 5-50, I figured I was wrong in that

assumption.. It didn't make sense to me that different countries would

have different standards for blood results, but hey, lots of things are

different in other countries. After all, even Cuba provides healthcare

for all the people...but america, the supposedly civilized country,

doesn't. (Oops, sorry...can you tell that this is a sore spot with me?)

Normal TSH is different in all people...some people tolerate the high

end of normal while others need to be at the low end. Even when we got

my TSH down from 110 to 5.0, I still didn't feel right and asked if we

could increase my synthroid dosage to bring it down to the low end. When

it got to 1.5, I was feeling like my old self again. So if they get it

down to 5.0 and you still aren't feeling right, ask them to bring it

down to a lower level.

Isn't it wonderful having this list to bounce things off of? If it

weren't for this list, I don't know how I would have made it through

treatment...and even the support during the stress of my almost 6 months

of unemployment has been a life line to me.

Blessings...or as they say in Holland, Liefs....

Tatezi

After having been off synthroid for several months, the brain fog was

horrible..it still is and I've been back on synthroid for 3 weeks now.

Personally I think brain fog is the worst part of all this. I've found

it very hard to not be able to learn things like I used to, to not be

able to focus, to forget things all the time, etc. You do learn to work

around it with lists and things, but list don't help focusing and the

ability to learn things quickly. I used to do a lot of graphics and web

work...now it seems that I can't focus long enough to get anything done.

Very very frustrating.

willem landstra wrote:

> HI.When claudine thought my thyroid level was too high I called the

> Doc,got his secretary and he said it was ok.Today Tat told me that the

> level in the US is 0.5-5.I called again and this time I got the JP on

> the line,he told me it was too HIGH.I asked him why he never called me

> to tell me to come in.The stupid secretary made a mistake,he thought

> the level was between 5 and 50,then 8 is ok.Tomorrow I see the Doc and

> see what we are going to do about it.THANK YOU TAT and CLAUDINE for

> the info..

>

>

>

[Guest guest]

Marilyn J. Kerr RN 1997,1998, 1999, 2008,2009

One of the first things that makes us realize that there is something wrong with us is the inability to perform intellectually like we once did. We seemingly accept the increasing pain, the muscles spasms, the insomnia, but when we keep forgetting our own phone number, red flags go up.

We lose things - misplace others - on a route we know, we get lost - we forget where we're going - shopping lists lose their importance because we keep forgetting to bring them - we lose our car in parking lots time and time again - we come home from shopping and realize we bought the exact same things the day before. We forget friends' names. We stop in mid-conversation because we've forgotten what we were talking about. We start using gadgets and date books in order to keep track of our normal daily to-do list. If we handle our own checkbook, we gradually have more and more trouble with it. Even taking a shower is a major effort because we don't remember whether we've rinsed the shampoo out of our hair - we lose the washcloth - we drop everything - we forget whether we rinsed all those hard-to-reach areas. What were once functions that we handled without thought, we now need to consciously review

every aspect of the process before it occurs.

We laugh about it. We learn to "cover" the errors with laughter. But we're embarrassed and silently start questioning our own sanity. We worry about brain tumors and Alzheimer's because we know the problem is far more extensive than other people are seeing. As Janet, a newsgroup member said, "I can no longer rely on me!"

If we tell our doctor about our problems, we are often easily placated by the doctor's words. "Everybody starts having trouble as they get older." "No, you don't have Alzheimer's - just FMS." "Oh, you're just depressed."

We take comfort from such dismissals. We really don't want to believe that something is really wrong with our brain.

So we joke about it with each other - further dismissing its importance. Someone once said, "If it wasn't for brainfog, I wouldn't get any exercise!"

But something is wrong. This is not the everyday forgetfulness that everyone experiences from time to time. This is a 24 hour, seven day-a-week continual struggle to appear and act normally. It's been proven by SPECT and PET scans of the brain. It really IS all in our heads - and it's real.

This is a normal brain -> This is a CFIDS brain -> (hepcbrain)

Any questions??

Unfortunately, the full extent of our brainfog may not be known until a moment of clarity. That moment may be as simple as finding your "lost" glasses on the end of your nose, or as complicated as finding out years later that you made a stupid little mistake when you filed your taxes.

What part of the brain controls all these things? Most often cited is the right temporal lobe. In plainer English, that's the section in the area of the right temple.

Here's what our doctors are saying:

Dr. M. Yunus: Cerebral blood flow imaging by SPECT (single photon emission computerized tomography) and PET (positron emission tomography), as well as topographic brain mapping with evoked responses using BEAM (brain electrical activity mapping) have been reported to be abnormal in a large majority of patients with CFS, showing a pattern different from normal controls and those with depression. Findings of the above imaging and topographic tests suggest an abnormality of several anatomic regions of the brain in CFS, including the temporal lobe, prefrontal cortex, and limbic structures (hippocampus, amygdala and cyngulate gyrus), perhaps on the basis of neurohormonal dysfunctions. Abnormalities by magnetic resonance imaging (i.e., areas of high signal intensity) have also been described in CFS, but their significance needs to be determined by further controlled

studies. Results of SPECT, PET, BEAM or MRI studies specifically in FMS have not been reported, but a good number of patients with CFS who had these tests carried out with abnormal results also had fibromyalgia.

Excerpted from "Chronic Fatigue Syndrome and Fibromyalgia Syndrome: Similarities and Differences" by Muhammad B. Yunus, MD, University of Illinois College of Medicine at Peoria, Peoria, Illinois

Dr. s: But we're talking about CFIDS or chronic dysfunctional diseases; you can span every physiological system in the body. The SPECT scan on the brain shows flow and function. If the temporal lobes are mismatched, you can be sure there will be trouble with memory, recall and concentration. If the frontal lobes are poorly lit, you will see depression.

Excerpted from Dr. s Speaks

Dr. Seastrunk: Why does brain injury becomes a factor years later? CFS is not a psychological illness but is physical with psychological overlays such as stress. Brain dysfunction is associated with abnormal behavior. Dr. Seastrunk developed a questionnaire, called the organic evaluator, for his patients that includes questions involving abnormal olfactory hallucinations (smells and tastes that aren't there); visual distortions (colors, spots, sparkles in outer portion of visual field indicates temporal lobe is injured); oscillopsia (vibration or oscillation of visual field); unable to understand when people are talking to you (left temporal lobe dysfunction); wrong word is used during conversation or go blank in the middle of the sentence; auditory hallucinations (hear noises, clicks, or someone calling your name while the

television is on or while taking a shower or using a hair dryer); dizziness (temporal lobe dysfunction); and gastrointestinal dysfunction. 95% of the CFS/MCS patients who take Dr. Seastunk's questionnaire have demonstrable brain pathology.

Cognitive dysfunction is a right temporal lobe phenomena. Multiple mood swings, trouble sleeping are all temporal lobe abnormalities.

Temporal lobe is responsible for understanding what we hear, retrieving and restoring our memories even though the patient may feel they have difficulty with their memory. The problem is actually the retrieval of this information. The card catalog is there but the PWC can't find the right word. Not being able to find the word or you forget what you are going to do, or blocking, is a left temporal lobe phenomena.

30% of people with panic disorder have focal brain injury as a cause according to Dr. Seastrunk's tests.

Deja Vu, the feeling of having been there before, is a temporal phenomena. Jamis Vu, the feeling of being lost while driving your usual way home, is also a temporal lobe phenomena (the temporal lobe has fired).

Migraine or migraine equivalents may also be a result of brain injury.

Excerpted from a lecture by Dr. Jay Seastrunk, Psychiatrist- 6/1/97 CFIDS Conference

Dr. Goldberg: What is causing the basal-constriction in the cerebral arteries? With a cold you will feel spacey, foggy, tired, yet a cold is a virus that doesn't go to the brain. While fighting the virus, the immune system releases cytokines and neuropolypeptides that shutdown blood flow. This has come out of good conferences in Europe attended by 10 or 11 laureates in the room and is now a well accepted physiologic explanation. This is a normal process our bodies go through when we have a cold. With CFS, our bodies are doing this all the time inappropriately.

Excerpted from a lecture by Dr. Goldberg, MD at the 6/1/97 CFIDS Conference

Dr. Goldstein: CFS patients are prone to overestimate their cognitive abilities. Their making of new memories is extremely fragile and disrupted by proactive interference. They do not benefit from memory cues. The making of new memories is easily disturbed by increasing the amount of information presented.

Excerpted from "Chronic Fatigue Syndromes: The Limbic Hypothesis."Dr. Jay Goldstein,1993

Why do we get brainfog? What causes it? What part of our disease creates this cognitive dysfunction? The following is a review of some of the major components of it.

Leaky Gut Syndrome: "In addition to the creation of food allergies by the leaky gut, the bloodstream is invaded by bacteria, fungi and parasites that, in the healthy state, would not penetrate the protective barrier of the gut. These microbes and their toxins, if present in large enough amounts, can overwhelm the liver's ability to detoxify. This results in symptoms such as confusion, memory loss, brain fog." Dr. Zoltan Rona, Toronto, Ontario

Immune Dysfunction: "The evidence suggests a reciprocal relationship of the immune and sleep-wake systems. Interference either with the immune system (e.g. by a viral agent or by cytokines such as alpha-interferon or Interleukin 2) or with the sleeping-waking brain system (e.g. by sleep deprivation) has effects on the other system and will be accompanied by the symptoms of the chronic fatigue syndrome." "Fibromyalgia, sleep disorder and chronic fatigue syndrome." 1993 Moldofsky H

Viral: "Virally infected patients are more likely to show cognitive impairment and other symptoms of sub-cortical brain dysfunction." Stealth Virus Testing Center for Complex Infectious Diseases

HPA axis dysfunction: "His clinical evidence states that the symptoms associated with Persian Gulf illnesses appear to be caused by abnormalities in the hypothalamus portion of the brain, which controls many bodily functions. When the hypothalamus malfunctions patients can experience chronic fatigue, fibromyalgia, peripheral neuropathy, arthritic esthesiopathy, chronic diarrhea and bloating, and respiratory problems. "In terms of Neuropsychiatric phenomena they have memory problems, decreased cognitive ability, agitation, compulsive behaviors and obsessive thoughts, vulnerability to mental destabilization and a generally minimal stress tolerance. In my own experience they have subtle but consistent neurological problems like clumsiness, visual disturbance and attentional difficulties." "Persian Gulf Illness : Is It All Just 'In Their Heads?' New Report Shows Evidence of Brainstem Encephalitis In Gulf War Veterans" E. Baumzweiger, M.D.

"SPECT scans show anterolateral and dorsolateral hypoperfusion, the right hemisphere worse than the left. The right hemisphere deals mostly with novel situations and uses norepinephrine. Norepinephrine is crucial to cognitive novelty. The left hemisphere deals mostly with repetitive, well-routined, pre-learned activities and uses mainly dopamine. Dopamine is critical to cognitive routinization. Flu-like illnesses are known to deplete brain norepinephrine. Regional cerebral blood flow is consistently found to decrease after exercise or any activity that makes the patient worse, for example doing calculations.

PET scans show activation of the dorsolateral prefrontal cortex along with decreased regional cerebral blood flow to the left angular gyrus, part of the neural network involved with tasks that require "willed action". Hypoperfusion and malfunctioning of the inferior parietal cortex leads to inappropriate sensations, behavior and emotions." "Betrayal By The Brain: The Neurological Basis of Chronic Fatigue Syndrome, Fibromyalgia Syndrome and Related Neural Network Disorders." Dr. Jay Goldstein

So what do you do? Perhaps you're still working and notice you are unable to even grasp the simplest part of those new forms you have to use. Perhaps people are noticing that glazed-over look you have as you struggle to understand a new instruction. Maybe you've overdrawn your checking account again - despite superhuman efforts on your part to prevent it. Maybe you're watching the Weather Channel because it's the only channel that makes sense. You're forgetting to take the garbage out. The list is endless on how this cognitive dysfunction can effect your life.

Your personality is changing. You're no longer as spontaneous as you used to be because everything coming into your brain has to be sifted for importance - for nuances you used to catch easily. You're struggling to react appropriately to everyday situations - and it's a constant effort which adds to our stress.

The good news is that Brainfog is reversible, or, at least, the progression can be halted with medications. In fact, the SPECT scan pictures above are actually of a CFIDS brain pre and post treatment (although Harvard neglects to tell us what the treatment involved).

There are anecdotal messages on the lists on various herbs and medications that have helped. Co-enzyme Q10 150mg a day seems to help many people, including myself. Gingko Biloba has adherents. Dr. Lapp says low dose Ritalin seems to jump start the brain (and I find that to be true). NADH helps some people. Neurontin may help with lessening of brainfog.

Because our brainfog is underdiagnosed by our local doctors, there's very little research on treating it - especially in FMS. However, please don't feel that there isn't something that can't be done. I can vouch for that medications listed above do help, and are worthy of you and your doctor discussing the issue.