The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Guy with concussion

Discussion in 'General ME/CFS Discussion' started by Prefect, Dec 26, 2017.

  1. Prefect

    Prefect Senior Member

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    A guy at my work took almost half a year off because of the severe concussion. Finally came back to work last week and told me his symptoms. They were strikingly similar to mine. Though his were definitely more severe in the beginning, The similarities were striking . Inability to read because eyes can’t focus and Keep jumping around. Insomnia anxiety and panic that Previously did not exist. Inability to concentrate. Insomnia. I’ve been reading people with concussion Even have temporary autonomic dysfunction.

    I’m wondering if we should be looking into concussion pharmacology to help ourselves with similar symptoms? I’ve even thought about Checking out neurofeedback Places that treat people with concussion.
     
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  2. Abha

    Abha Abha

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    Hi Prefect

    Any type of concussion should be taken seriously.I know a lot about this from my own life experience (in advanced years now)and the health problems it can cause.I have written elsewhere re this on this Forum.It is something that ordinary GPs/consultants don't take seriously(maybe that is changing but I doubt it?).It is most likely that your friend has brain injury and he/she needs to look into PTHP(hypopituitarism).Here are a few links that have helped me understand things better but in the end one needs to find a good endocrinologist who deals with such.

    Dr. Anna's Couch Talk with Dr. Mark Gordon: TBI, PTSD and the Hormone Connection


    Joe Rogan Experience #574 - Dr. Mark Gordon, Matthew Gosney & Jason Hall



    http://www.dailymail.co.uk/health/a...rain-injury-30-000-cases-chronic-fatigue.html

    If you wish you can PM me re this and I can fill in some other details...
     
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  3. *GG*

    *GG* senior member

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    I met an old High School classmate recently. We talked a little, he played hockey. He suffered a concussion, and told me of some of his symptoms. One was getting wiped out by exercise now!

    It sucks that someone enjoying a passion of theres, getting some exercise now has rather serious health issues!

    GG
     
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  4. Hip

    Hip Senior Member

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    The condition your work colleague developed may be post-concussion syndrome (PCS), which has ME/CFS-like symptoms. Most cases of PCS will resolve within six months, but 1 in 10 cases will persist for more than a year.

    I don't think there are any specific treatments for PCS, but I certainly think it would be very interesting for researchers to examine PCS patients and try to figure out what is driving their symptoms, because that could well throw some light on what is causing the symptoms in ME/CFS.
     
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  5. Prefect

    Prefect Senior Member

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  6. Hip

    Hip Senior Member

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    They mostly seem to be medications to reduce the symptoms of concussion, rather than treating the underlying cause of those symptoms.



    I just found this interesting paper on the neuroinflammatory response following concussion: intriguingly, they find that immediately after a concussive blow to the head, hyperglycolysis (excessive glycolysis) occurs. This then subsides shortly after the injury, and then a prolonged state of hypoglycolysis (too little glycolysis) sets in.

    So it is fascinating that concussion, there are abnormalities of energy metabolism, just as have been found in ME/CFS (eg, the Myhill, Booth and McLaren-Howard studies found major energy metabolism dysfunction in ME/CFS).
     
  7. Prefect

    Prefect Senior Member

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    I wonder if a way of bypassing dysregulated cerebral glucose metabolism is through a ketogenic state by forcing the brain to use ketones rather than glucose for energy.

    A nautropath wants me to go on the ketogenic diet especially since most my symptoms or cognitive and neuro and I almost have no body symptoms except for very mild pots my body has compensated for over the years. I'm skeptical, but this is intriguing.

    It seems to work wonders for epilepsy, but I have trouble finding research on its impact on post infectious chronic neuro and psyche issues. I'm also not looking forward to ingesting lard and avocados all day rather than my current high protein diet. Also not looking forward to giving up my wine (high carb) but on the bright side can keep my whiskey (no carbs).:D

    I don't know though it's quite an undertaking.
     
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  8. Hip

    Hip Senior Member

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    There is a thread on the forum somewhere, in which some people reported doing quite well on a ketogenic diet, but others got no benefit. I agree its not a diet to relish, and that's the main reason I have not tried it.
     
  9. Ema

    Ema Senior Member

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    I’ve been keto on and off since the late 90s. It put me into a remission once in my 20s and has been the most effective treatment (of many many) this go around as well, though still short of remission.

    Once keto adapted, I had no problems with wine occasionally (alcohol gets burned pretty quickly no matter what). And while I do eat a lot of avocados, I have never eaten lard!

    Honestly, it gives me freedom from thinking about food, which is amazing after the carb roller coaster. I have a cheat day every few weeks where I have something normally forbidden and that helps make it easy too.
     
  10. Prefect

    Prefect Senior Member

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    How long did your remission last and how do you know it was the keto diet?

    People with chronic illness adapt after a long while to the new normal, and think their subjective improvement was something they happened to be doing at the time, but it was in fact just adaptation. I've taken Citicoline for a while and though it hasn't "cured" me, I get worse when I don't take it because I think I will (I call that Minucebo ;)).

    The only things that dramatically improve me in a tangible way are big greasy meals followed by lots of alcohol, followed by a few cigarettes. At that point I approach near normalcy and can even socialize rather than enter a dissociative panic state when merely my girlfriend or 3 year old son show up at the door.

    I feel like all the approaches that get discussed as near cures would be in the papers if they in fact were cures across the board. This condition has been in medical literature since the 1800s and diets (remember the candida diet?) and tinctures have come and gone but the condition hasn't budged. In the early 1900s they gave you a downer and an upper. The condition was called neurasthenia. I think they were on the right track. Many mornings I feel I should be trying Gabapentin and a dopamin agonist.

    I'm a very skinny 48 year old male. I wonder how I'd manage a keto diet. Could a skinny person do it? I've lost a lot of weight over the past year even though my diet hasn't changed and my alcohol consumption has approached nearly 3/4 of a bottle of red wine a night after dinner, which is the only thing that helps me feel normal (which is one reason I know I actually don't have CFS but one of those conditions that mimic it). That and chain smoking.

    I think I have organically induced HPA axis dysregulation (observed in CFS, PTSD, Major Depressive Disorder). I conceived a child 3 years ago (4 in fact, 3 miscarried) and now my testosterone is below that of a 90 year old. It makes no sense.
     
    Last edited: Dec 26, 2017
  11. pamojja

    pamojja Senior Member

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    I'm 50 and skinny too. Turned to low-carb because of glucose intolerance and for halting my prediabetes. So without aiming at, blood-tests did show I'm in ketosis after my usual 16 hr overnight fast. Get about 68% of calories from healthy fats, 19% from protein and 14 from carbs. Though many lab marker improved, my weight stayed exactly the same at about 60 kg/1.73m.
     
  12. Ema

    Ema Senior Member

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    Because, unlike now when I’ve usually changed 68 things at once, back then, it was the only variable that had changed. I had been eating a low fat mostly vegetarian diet...and I’d gained a lot of weight and was desperate for it to come off. Even on 900 calories a day, I couldn’t shift a pound until keto. I never expected it to fix anything, but it fixed everything.

    I was in my mid 20s and the remission lasted for about a decade. I think it might have lasted longer had I not been in a serious accident.

    Since going back to keto in the fall of 2016, I’ve lost 40 hard to shift pounds and have regularly been hitting 10k steps a day. It’s the difference between house and bedbound and getting go do (short) things regularly, sometimes even having multiple activities in a day, which was unheard of pre-keto. I’m also no longer in diabetes danger.
     
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  13. ljimbo423

    ljimbo423 Senior Member

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    Hey Prefect - Tramatic brain injury/concussion often cause increased intestinal permeability (leaky gut) and other gastrointestinal problems-

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2989839/

    I have been treating leaky gut for several months now. I have had severe anxiety and panic attacks for years. In the last several months my severe anxiety is now mild to moderate.

    The anxiety attacks I used to have on a regular basis are, for the most part, gone!:D I can't even remember the last time I had a full blown anxiety attack.

    For me, the connection of my anxiety and anxiety attacks to a leaky gut is crystal clear! Just something you might want to consider?

    Jim
     
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  14. Rlman

    Rlman Senior Member

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    @Prefect I think this may be the first time i see someone mentioning this symptom i have. i can't hold my gaze for more than an instant when looking at anything, so eyes constantly moving around when looking and if i do try to hold my gaze my eye gets injured (swollen for days, can't see as well till it heals). i also have dim vision and and can't see far due to inability of eye to look that far (not blurriness). i can only read on computer with max brightness and text enlarged. when you say your eyes keep jumping around do you mean you mean they constantly moving as you can't hold it still to gaze/stare/focus at something? do you know the cause of such symptoms? i also had a brain injury before these eye issues started (the brain injury was maybe from infection-not physical trauma).
     
  15. Prefect

    Prefect Senior Member

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    Yes. Eye focusing issues are common in CFS/ME, POTS, Lyme, and concussion. If I knew the cause I would definitely on the path for a solution, because this symptom is the one major issue that makes my life difficult and is the cause of my concentration problems and anxiety. If I could find a way to solve it I would be borderline normal.

    It is also exasperated by anxiety so it's a catch 22. I find alcohol helps me so it could be something to do with GABA dysfunction.

    Also, pay attention to your breathing. You may not be conscious of it but chronic hyperventilation cause over stimulate your nervous system and cause this. Not to mention it causes vasoconstriction reducing blood flow in the head.

    How do you know you had a brain injury? Were you diagnosed with it?
     
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  16. Rlman

    Rlman Senior Member

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    I think i had a brain injury bc when i got sick with flu that triggered this CFS-like illness i started having a constant pulsing feeling in my brain that i never had in my life. it increases in force when BP increases like when stressed and also when heart beats harder. also i suddenly was unable to track with my eyes when in motion (that has since mostly healed thankfully). starting a year after onset of illness i became unable to handle flickering or flashing lights and also LED lights like those on side of computer, felt harmful to brain like that it could trigger a seizure (it actually triggers strong pulsing in my head though not sure what is happening exaclty). the flashing lights bother me less when i have more energy. also first 6 months of illness if i closed my eyes it was still light, suddenly sleep was unable to be deep for many months, severe light sensitivity that got better after some months. I've done 3 MRIs, including looking for vascular shunts in the brain-all negative. i wonder though if the movement i did during the scans affected their accuracy (i have hard time breathing lying flat so was moving head back to take deep breath several times during the scan.)

    i actually find my eye focusing ability improves slightly when stressed, i thought maybe there was more bloodflow to eyes due to faster pulse/hear beat.
     
  17. Rlman

    Rlman Senior Member

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    i wish i knew what was causing the eye issues. opthamologists have never found anything wrong with my eyes other than minor myopia. so weird. i think its partially due to the severe weakness i am dealing with. if i had more energy i think eyes would work better possibly.
     
  18. Prefect

    Prefect Senior Member

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    Rlman you might benefit from propranolol
     
  19. Rlman

    Rlman Senior Member

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    Thanks for the suggestion @Prefect. How would it be helpful? i see its a beta blocker. so it lowers BP i guess? My BP is actually borderline low. i feel the pulsing in head even with this BP level.
     
  20. Wayne

    Wayne Senior Member

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    Dr. Daniel Amen specializes in brain health, and has scanned the brains of thousands of patients. Most of the brains he scanned suffered from various maladies, from ADD, to concussions, depression, toxic exposures, etc. In virtually every case, he was able to induce pretty dramatics improvements by using various protocols he's discovered work to heal the brain. Followup scans almost always show improved brain circulation and functioning.​
     
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