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    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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Pre existing conditions

cman89

Senior Member
Messages
429
Location
Hayden, Idaho
Has anyone here had pre-existing cardiac or neuro problems before cfs onset? If so how has cfs affected it? and how were/are you treated for that condition? (I am looking mostly for cardiac stuff here)
 

cman89

Senior Member
Messages
429
Location
Hayden, Idaho
So, I had a concussion back in Jan, and my symptoms started in June with tingling in hands and feet/tinnitus/light sensitivity/noise sensitivity. Was tested for MS, negative. Many of the neuro problems went away, and I was treated with augmentin, which really helped put me on the road to recovery, til I crashed after an emotionally traumatic event. I developed insomnia and cardiac problems, plus a recurrence of the fatigue from before. That is what I struggle with now. I consider the concussion, vision stuff, tinnitus, to all be pre-faitigue. My main concern now is dealing with possible neuro damage, and so did any of you have neuro problems before CFS onset? and how was it addressed?
 

Hip

Senior Member
Messages
17,789
How serious was the concussion?

Some info:
Physical trauma (eg: car accident)

Physical trauma such as a road accident or a fall can precipitate fibromyalgia and ME/CFS, particularly if a head or neck injury is sustained (such as whiplash or concussion).

Fibromyalgia and ME/CFS can appear immediately after an accident, or begin to develop over the subsequent months.1 2 One study found fibromyalgia was 13 times more likely to occur following neck injury compared to lower extremity injury.1

However, note that hypopituitarism will occur in up to 30% of people who sustain a moderate or severe traumatic brain injury (TBI), and can sometimes occur even in mild TBI. Hypopituitarism can have symptoms very close to those of ME/CFS.1 Thus there is a real danger of misdiagnosing such symptoms ME/CFS when the true cause is hypopituitarism. If a traumatic brain injury is involved, and ME/CFS-like symptoms ensue, testing for hypopituitarism would be advised. The short synacthen test (also called the ACTH stimulation test) is a standard test for hypopituitarism, but this test is not very accurate, and in fact misses 40% of hypopituitarism cases. A more accurate but more complex and risky test for hypopituitarism is the insulin tolerance test.

A trauma to the spine can sometimes cause a syringomyelia to later form in the spinal cord, which may result in ME/CFS-like symptoms. Syringomyelia can be treated surgically.
 
Last edited:

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
It may be worthwhile to see an endocrinologist to discuss the effects of your concussion. If it turns out that the concussion has caused some damage to the pituitary, then hormone replacement of the hormones that aren't being produced would be in order.

I researched traumatic brain injury (TBI) and how it affects hormones because I had a whiplash injury shortly before developing ME/CFS. I just recently shared some of these articles with my primary doc and endocrinologist. Here are some of the articles I found:

http://www.eje-online.org/content/152/5/679.full
Hypopituitarism after traumatic brain injury

I think the article is saying that hypopituitarism is common even with mild concussion.

A low T4 in the absence of elevated TSH indicates secondary hypothyroidism. TSH deficiency has been found in TBI patients evaluated by assessing either basal hormone levels (1–22%)or response to TRH stimulation (4.5%). A previous series demonstrated a very high occurrence of thyrotropin deficiency among TBI patients with hypopituitarism, suggesting TBI as an important cause of otherwise unexplained central hypothyroidism.

http://www.hormones.gr/177/article/article.html
Title: Endocrine evaluation of patients after brain injury: what else is needed to define specific clinical recommendations?

http://pituitary.mgh.harvard.edu/NCBV11I2.htm
Brain Injury and Pituitary Dysfunction

http://www.ncbi.nlm.nih.gov/pubmed/15253797
Occurrence of pituitary dysfunction following traumatic brain injury

http://drbobseiler.com/wp-content/uploads/2010/09/article_05-44_gaab.pdf
Reduced reactivity and enhanced negative feedback sensitivity of the hypothalamus-pituitary-adrenal axis in chronic whiplash-associated disorder

Here's a good outline discussing hypopitutiarism:
http://www.merckmanuals.com/home/ho...ituitary_gland_disorders/hypopituitarism.html
 

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
In the 90's there was a psychiatrist, Dr. Jay Seastrunk, who was doing trials using Neurontin on people who had neuro trauma prior to getting CFS. I had been in a car accident in the late 80's and my head hit the steering wheel so I qualified for his study.

He had a questionnaire to determine if you qualified. I can't remember most of what was on it but he did ask if you heard music when a hair dryer was on, did you experience J'aime vous? I can't remember any more.

So was on 3200 mgs of Neurontin. After about a year I had gained 60 lbs and right before I started to titrate off I was hallucinating. But for awhile I felt ok.

Here is a link I found.

http://www.ncf-net.org/forum/neurontin98.htm
 

Martial

Senior Member
Messages
1,409
Location
Ventura, CA
It may be worthwhile to see an endocrinologist to discuss the effects of your concussion. If it turns out that the concussion has caused some damage to the pituitary, then hormone replacement of the hormones that aren't being produced would be in order.

I researched traumatic brain injury (TBI) and how it affects hormones because I had a whiplash injury shortly before developing ME/CFS. I just recently shared some of these articles with my primary doc and endocrinologist. Here are some of the articles I found:

http://www.eje-online.org/content/152/5/679.full
Hypopituitarism after traumatic brain injury

I think the article is saying that hypopituitarism is common even with mild concussion.

A low T4 in the absence of elevated TSH indicates secondary hypothyroidism. TSH deficiency has been found in TBI patients evaluated by assessing either basal hormone levels (1–22%)or response to TRH stimulation (4.5%). A previous series demonstrated a very high occurrence of thyrotropin deficiency among TBI patients with hypopituitarism, suggesting TBI as an important cause of otherwise unexplained central hypothyroidism.

http://www.hormones.gr/177/article/article.html
Title: Endocrine evaluation of patients after brain injury: what else is needed to define specific clinical recommendations?

http://pituitary.mgh.harvard.edu/NCBV11I2.htm
Brain Injury and Pituitary Dysfunction

http://www.ncbi.nlm.nih.gov/pubmed/15253797
Occurrence of pituitary dysfunction following traumatic brain injury

http://drbobseiler.com/wp-content/uploads/2010/09/article_05-44_gaab.pdf
Reduced reactivity and enhanced negative feedback sensitivity of the hypothalamus-pituitary-adrenal axis in chronic whiplash-associated disorder

Here's a good outline discussing hypopitutiarism:
http://www.merckmanuals.com/home/ho...ituitary_gland_disorders/hypopituitarism.html


Do you guys know anything in terms of treatment for symptoms of hypo pitutiarism in terms of chronic infection of brain tissue? I saw that it was linked to things like that, curious to know if an infection is affecting hormone production do you treat the infection and allow hormones to stabilize or assist with hormones during treatment? Or perhaps the infection just mimics symptoms and presentation of pituitary dysfunction without direct correlation?
 

sflorence

Senior Member
Messages
134
In the 90's there was a psychiatrist, Dr. Jay Seastrunk, who was doing trials using Neurontin on people who had neuro trauma prior to getting CFS. I had been in a car accident in the late 80's and my head hit the steering wheel so I qualified for his study.

He had a questionnaire to determine if you qualified. I can't remember most of what was on it but he did ask if you heard music when a hair dryer was on, did you experience J'aime vous? I can't remember any more.

So was on 3200 mgs of Neurontin. After about a year I had gained 60 lbs and right before I started to titrate off I was hallucinating. But for awhile I felt ok.

Here is a link I found.

http://www.ncf-net.org/forum/neurontin98.htm


Hi! I am really excited that I found someone who tried Dr.Seastrunk's protocol.

I am currently on 3200mg of Neurontin as well, and I am thinking of going a bit higher. I am mainly doing it for my MCS but if it helps my CFS I won't complain :) I have already seen great benefits from this dose, such as being able to actually rest, and less MCS symptoms.

Question: How did you manage the cognitive impairment side effects? With school right around the corner I need to be on my best thinking capabilities.

Also, did he ever add in effexor? Or anything of the like? Supposedly (maybe in his later practice) he saw great improvement when he added in a drug like effexor after administering the neurontin.

Thanks!