Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
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Headache & Dizziness/Vertigo for Months

Discussion in 'Neurological/Neuro-sensory' started by Elisa, Jul 17, 2017.

  1. Hi All,

    I'm pretty desperate now - starting last Oct '16 my ME/CFS got much much worse out of no where and I wasn't able to figure out why - normally I can reverse all things and get back to my baseline - but not this time and I now am as bad as I was 22+ yrs ago at the beginning...

    Over a month ago I got severe dizziness and confusion and then headaches started - all with in a few days and none of it will stop. I am very upset about it and now it seems I am getting really depressed too - which is catastrophic for me as I am unable to get un-depressed easily - crying almost all day from the pain and frustration. Really deeply grieving for my massive loss in functionality.

    Went to the Cleveland Clinic for a neurology consult and they diagnosed three things (i think just guessing) - acute intractable headache (post concussion in Dec '16 from my bouncing bad little lab/puppy), peripheral vertigo and cervicalgia.

    Here are the precipitating highlights from Oct to now:

    (Aug '16) Eye exam (don't know why - set off terrible fatigue)
    (Sept '16) European Hornet sting/bite - and then Cellulitis 10 days later (looked like Lyme)
    (Oct '16) Found out my gluten-free Multi - wasn't - so no multi now (see folate issue below)
    (Dec '16) Concussion - from dog's head jumping up to hit mine
    (Jan - Mar '17) - tried to recover from concussion
    (Jan - May '17) - tried to add methyfolate -it just ramped up fatigue - so I stopped (big mistake)
    (June'17) Dizziness and Headache, Confusion and full blown ME/CFS fatigue

    Really, really lost on how to proceed - so I am grateful for any help or direction or ideas.

    Elisabeth
     
    Last edited: Jul 17, 2017
    ritasheart likes this.
  2. leela

    leela Slow But Hopeful

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    Your reasons for vertigo may be different from mine, but what made a huge difference for me was high (for me) dose liposomal melatonin.
    The only brand that had the effect of nearly eradicating it was Pio Pure. (I still get very minor momentary bouts, but literally they last for two seconds, and infrequently). A bit pricey but money well spent! Each pump is 4 mg and I pump twice before bed.

    I tried DaVinci Labs liposomal and NOW brand liquid, but for unknown reasons only the Bio Pure one did the trick.
    Amazing difference for me, hope this is useful info!
     
    Cyndia likes this.
  3. Thank-you so much Leela! I recently read that melatonin is used in place of indomethacin for some types of headaches.

    I wonder my sleep isn't right - and thus, I'm not producing the required melatonin...

    Thanks again!
     
  4. leela

    leela Slow But Hopeful

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    You're welcome! Yes, sleep is messed up in one direction or another in most PWMEs. Some people react badly to melatonin, so I suggest proceeding with caution and, as with anything, titrate...:hug:
     
  5. maybe some day

    maybe some day Senior Member

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    Its the nature of the beast. I fell flat in bed in january with symptoms that I havent had in 20 years. No rhyme or reason why. Just now starting to feel better.
     
  6. Maybe Some Day - thank-you...that is true and something I guess I hadnt really considered. It was such a shock to me. Thanks for helping me put it into perspective! Glad you're doing better...any tips on how you got there?
     
  7. maybe some day

    maybe some day Senior Member

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    Tears, time, and patients. Literally.
     
  8. herpesbaby

    herpesbaby Senior Member

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    So men cry too? (
     
    ahimsa likes this.
  9. AdAstraPerAspera

    AdAstraPerAspera

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    Hi Elisa, I'm sorry to hear you're having so much trouble :( have you experienced any tachychardia or heart discomfort alongside the dizziness and headaches? And does standing make it worse? Just wondering if you have investiaged POTS as a potential cause as I know when I don't manage my POTS correctly it causes the symptoms you've described. And I'm incredibly sorry for the emotional pain it causes. It's absolutely awful to lose functionality like that, and feel as though it will never return. I have every hope that you'll find ways to manage and improve your symptoms, and if you ever want anybody to talk to, please feel free to PM me anytime :heart:
     
    ahimsa and Elisa like this.
  10. maybe some day

    maybe some day Senior Member

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    Believe it
     
    ahimsa likes this.
  11. 62milestogojoe

    62milestogojoe What's a forum then?

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    So sorry to hear you haven't got back to base yet. I understand your sense of grief-dizziness is a destroyer of function. Try to check out a post called Tree Kings to lift you in General treatment. Over time, it has kept my disabling dizziness under control.

    Good luck, don't despair-you can get back to your baseline.
     
    Elisa likes this.
  12. ritasheart

    ritasheart Touch the heart of another with your own.

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    Elizabeth, I am so sorry about what you are going through. I had a bad fall and concussion in 2013, and I had a lot of symptoms that overlapped with CFS but different as well. I found myself to a "T" in mild TBI articles like the one below. I wish I had something that helped me, but it was only time and I still have large chunks of memory totally gone and fractured sleep, sensitivity to light and other things. I healed more slowly than a healthy person, but I am much improved. I probably am where I will be now, but it's so much better than the first year!

    Mild TBI Symptoms

    A traumatic brain injury (TBI) can be classified as mild if loss of consciousness and/or confusion and disorientation is shorter than 30 minutes. While MRI and CAT scans are often normal, the individual has cognitive problems such as headache, difficulty thinking, memory problems, attention deficits, mood swings and frustration. These injuries are commonly overlooked. Even though this type of TBI is called “mild”, the effect on the family and the injured person can be devastating.

    Other Names For Mild TBI

    * Concussion

    * Minor head trauma

    * Minor TBI

    * Minor brain injury

    * Minor head injury

    Mild Traumatic Brain Injury is:

    * Most prevalent TBI

    * Often missed at time of initial injury

    * 15% of people with mild TBI have symptoms that last one year or more.

    * Defined as the result of the forceful motion of the head or impact causing a brief change in mental status (confusion, disorientation or loss of memory) or loss of consciousness for less than 30 minutes.

    * Post injury symptoms are often referred to as post concussive syndrome.

    Common Symptoms of Mild TBI

    * Fatigue

    * Headaches

    * Visual disturbances

    * Memory loss

    * Poor attention/concentration

    * Sleep disturbances

    * Dizziness/loss of balance

    * Irritability-emotional disturbances

    * Feelings of depression

    * Seizures

    Other Symptoms Associated with Mild TBI

    * Nausea

    * Loss of smell

    * Sensitivity to light and sounds

    * Mood changes

    * Getting lost or confused

    * Slowness in thinking

    These symptoms may not be present or noticed at the time of injury. They may be delayed days or weeks before they appear. The symptoms are often subtle and are often missed by the injured person, family and doctors.

    The person looks normal and often moves normal in spite of not feeling or thinking normal. This makes the diagnosis easy to miss. Family and friends often notice changes in behavior before the injured person realizes there is a problem. Frustration at work or when performing household tasks may bring the person to seek medical care.

    http://www.traumaticbraininjury.com/symptoms-of-tbi/mild-tbi-symptoms/
     
    Last edited: Aug 10, 2017
    Elisa likes this.
  13. 62milestogojoe

    62milestogojoe What's a forum then?

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    Hi Elisa, just a thought but i think it is typical for 'We with ME' to have low blood pressure which can result in orthostatic deficits ....dizziness.

    I've used L-arginine 500mg tablets to attempt to increase blood circulation. It might help. btw as an ex rugby playing, mountaineering superbike riding hard guy I still cry my eyes out like a baby too sometimes in unadulterated grief at what I've lost (not in front of my family.....!) Hello maybe some day.

    Things will get better.
     
    Mary likes this.
  14. Mary

    Mary Senior Member

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    What is the "big mistake" you're referring to here - is it starting or stopping the methylfolate?

    Starting methylfolate and/or B12 can cause a rather sudden drop in potassium, which can cause often severe fatigue, and other symptoms as well, including heart palpitations, muscle spasms, insomnia and more. This is very common and often people stop taking the methylfolate or B12 because of these symptoms, without knowing the cause of these symptoms, and that the real problem is their potassium levels have tanked.

    Potassium levels often tank when adding in folate and/or B12 because cells start dividing more rapidly with the folate or B12, which increases the need for potassium, thus inducing a potassium deficiency. This happened to me when I started methylfolate 7 years ago - I was hit with severe fatigue on day 2 or 3, but fortunately had read Freddd's posts about potassium and so started taking a potassium supplement and titrated up to 1000 mg a day, and the severe fatigue abated. I've been able to continue with the methylfolate, which I need (it markedly increased my energy, and I've learned I need to take extra potassium daily. I also drink low-sodium V8 or tomato juice almost daily.

    People with ME/CFS often have low intracellular potassium despite normal serum levels. Former PR member Richvank explains why this is so: http://forums.phoenixrising.me/inde...ded-in-methylation-treatmt.18670/#post-291422

    An easy way to see if some of your fatigue is due to low potassium is to drink several glasses of low-sodium V8 or tomato juice, which is high in potassium and see if it helps any of your symptoms. It might take a day or 2 to notice results. So you may be able to restart the methylfolate.
     
    62milestogojoe likes this.

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