1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
9th Invest in ME International ME Conference, 2014 - Part 2: Pathogens and the Gut
Mark Berry continues his series of articles on the 9th Invest in ME International ME Conference in London, with the emphasis shifting from autoimmunity to pathogens and the gut ...
Discuss the article on the Forums.

problem at brain

Discussion in 'Neurological/Neuro-sensory' started by Cindi, Feb 12, 2014.

  1. Cindi

    Cindi Senior Member

    Messages:
    196
    Likes:
    14
    Hi all
    I have a problem at one side of my head since about 12 years. I am trying to find out if this is related to CFS or mercury poisoning or damage done during theeth extraction.

    Every 45 minutes-1.5 hours, left side of my head starts feeling strange. It feels like my brain is swollen inside. I start not being able to think properly. There will also be some slight numbness feeling at left side of my head. It does not matter if i am lying down or standing. This occurs even if i am on the couch watching TV.

    My light and sound sensitivities increase to the point that i can not handle.My thinking and ability to understand anything totally stops.I can not process any information and any attempt to do that results in painful,torture like feeling in brain. I have to stop whatever i am doing and go into rest mode with complete silence and darkness.

    After i start resting i start getting uncontrolled muscle contractions at my head and neck area.Those come on irregular intervals. My head goes backwards and than relaxation comes.While these contractions occuring i feel some electrical movement from left side of my head towards the right side.Sometimes it feels like lightening moving from left to right.This repeats itself many times.

    After some time my brain starts feeling normal again. I get up. I am totally normal. This contraction process lasts anywhere from 10 minutes to 1 hour.I need this contraction process as i can not recover without it.If that does not occur,i stay in `brain totally stopped` mode and i am unable to handle any sound or light.I can not talk or participate in any kind of activity.If someone forces me for any activity i go into nervous brakedown and start crying.

    I have a feeling that i have some kind of communication problem between left and right sides of my brain and via these contractions,communication is established,at least partly,just enough for me to be functional again for about an hour or so time.

    I wonder if this is related to cFS or not. Do any of you have a similar problem? If not i will conclude that it is not related to CFS but something else.Thanks so much.My answers may be late due to low functioning level.Please excuse me in advance.
    Last edited by a moderator: Feb 12, 2014
  2. Gandalf

    Gandalf

    Messages:
    50
    Likes:
    33
    Germany
    Doesnt sound too good..Maybe MS or something. Have you had an MRI done? Sounds serious to me.
  3. SOC

    SOC Moderator and Senior Member

    Messages:
    5,219
    Likes:
    6,101
    USA
    @Cindi,

    Your symptoms are very concerning. You need to seek immediate medical attention. While people at PR are concerned about you and your health, we are in no way qualified to help you with such a serious medical situation. Please talk to your doctor about this and maybe even go to the ER if this is a constant problem. It is not at all normal.

    The symptoms you describe are not common in ME/CFS. While many of us have a variety of neurological symptoms, the number, variety, and constancy of your symptoms are beyond what is typical for ME/CFS. It is much more likely that your symptoms are caused by something entirely different which needs immediate investigation.
    Nielk and Cindi like this.
  4. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,574
    Likes:
    1,206
    Florida
    Could this be a type of seizure ? I do part of this, brain stops and and whiney until some kind of seizure (petite mal but worse than my normal?) I'm having stops.
    The process takes anywhere from 15-90 minutes.

    I'm not sure how pain fits here tho.

    If possible, I'd see a neurologist. Or another doctor you're comfortable with who will take the time to listen. There may be a med that can counteract this. Klonopin helps me with some seizure activity but I'm drawing a blank right now as to whether I've used it for one of these. Nowadays, I just go ahead and take Klonopin if I feel pre-seizure jitters.

    fwiw, Imho, "normal" cfs symptoms should be evaluated because too many symptoms are being attributed to cfs that could be something else. Fwiw, diet, especially gf helped eliminate most of my weird neurological symptoms. I still have some seizure activity but I had a little as a child so I can't say all of this is cfs related.

    In case this sounds overly complicated, I'd ask your regular doctor for some type of seizure med, possibly Klonopin. And the next time thus happens to see if it helps. .125 mg usually works for me.

    hth.. x
    Last edited: Feb 12, 2014
  5. minkeygirl

    minkeygirl Senior Member

    Messages:
    2,183
    Likes:
    1,368
    Left Coast
    You need to see a doctor and let them figure this out. It may or may not have anything to do with CFS. We tend to link any odd thing that happens to us with the CFS/ME but maybe it's just something else going on that you need to address.

    Let the doctors decide if it's a seizure disorder, if you in fact need any benzos (klonopin) or what you need to do.
  6. August59

    August59 Daughters High School Graduation

    Messages:
    1,480
    Likes:
    402
    Upstate SC, USA
    I had a friend that developed the exact type of symptom. You definitely need to get some type of medical attention so that they can order what I'm guessing will be an MRI and probably with contrast.

    My friend had developed a aneurism just behind their right ear. I don't know the reason for the doctors not performing surgery, but he is a some medication that really keeps him mentally confused.

    Go the doctor and keep us posted!!
  7. Cindi

    Cindi Senior Member

    Messages:
    196
    Likes:
    14
    Thanks to all who have answered.I have visited two neurologists regarding this problem and neither was able to give any diagnosis. They said there was some abnormal brain activity but they would not call it seizure. MRI was okay. EEg showed some abnormal activity. QEEG said there was communication problem between different parts of the brain.It seems like this is not related to CFS as not any of you have a similar problem. Thanks so much for your help :)
  8. Hanna

    Hanna Senior Member

    Messages:
    353
    Likes:
    284
    Jerusalem, Israel
    Hi Cindi,
    I have some question to you : are those symptoms occurring in the same location (at home, if you are house bound for example), or do they occur without any distinction of place?
    I experiment some awful brain symptoms (like frying, has to stop everything and have sort of nervous breakdown) every time that I am exposed to some antennas/ and air conditionners. For me it is an environmental problem with EMF exposure. But it may be completely different from what you are describing, especially thoses 45mn-1.5 hours cycles.
    I am sorry you are experimenting such hellish thing. Hope you'll find some help.
    Cindi likes this.
  9. Cindi

    Cindi Senior Member

    Messages:
    196
    Likes:
    14
    Hi Hanna. Thanks for your answer. My symptoms do not have any relationship with places.It may occur anywhere.Only issue that effects the length of the cycle is the type of activity i am in. For example if i am having a phone call,time period is shorter.if i am on pc,just surfing i have some more time,if i am having a walk in nature without thinking anything i may be okay up to 1.5 hours. But it is almost never more than that.So, there might be some relationship with left,right brain activities. Best wishes.
    Hanna likes this.
  10. philpot

    philpot

    Messages:
    48
    Likes:
    69
    UK
    Regardless of what the dentists say about Amalgam fillings it is not at all good for us to have mercury in our mouths. The time of greatest risk is when of course the fillings are fitted, removed or else damaged. However, that said a lot of people have these fillings and have no issues and so it's a difficult connection to make, but of course possible.

    You do not mention it happens in sleep and so you could consider what are the differences, for you, between sleep and awake; brain activity, blood pressure, stress levels, chemical changes in the body (e.g., we do not tend to eat when we are asleep), etc., etc. Regards.
    Cindi and guiandres like this.
  11. amandabonn

    amandabonn

    Messages:
    2
    Likes:
    1
    Maybe you have swelling that comes and goes and causes the muscle spasms. It could be that your body is trying to move the lymph in the neck and head. You might want to try Dr. Perrin's protocol. That can help drain the lymph and decrease the brain swelling.
    Cindi likes this.

See more popular forum discussions.

Share This Page