International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
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Pre existing conditions

Discussion in 'General ME/CFS Discussion' started by cman89, Oct 23, 2014.

  1. cman89

    cman89 Senior Member

    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)
  2. cman89

    cman89 Senior Member

    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?
    panckage likes this.
  3. Hip

    Hip Senior Member

    How serious was the concussion?

    Some info:
    Last edited: Oct 23, 2014
  4. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

    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:
    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.
    Title: Endocrine evaluation of patients after brain injury: what else is needed to define specific clinical recommendations?
    Brain Injury and Pituitary Dysfunction
    Occurrence of pituitary dysfunction following traumatic brain injury
    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:
  5. minkeygirl

    minkeygirl But I Look So Good.

    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.
  6. Martial

    Martial Senior Member

    Ventura, CA

    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?
  7. sflorence

    sflorence Senior Member


    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.


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