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Thread: Horrible Brain Condition Following Reaction to Nitric Oxide Booster SPECT scan Damage

  1. #1

    Default Horrible Brain Condition Following Reaction to Nitric Oxide Booster SPECT scan Damage

    Hello I have been suffering from a horrible brain condition following a reaction to a Nitric Oxide boosting supplement containing the active ingredient ACTINOS. I took the supplement for 3 days at the recommended dose of 2 servings per day In April of 201. The second day I started feeling funny I noticed a ringing in my left ear and dull almost blurry vision. I stopped taking it the third day because of these unusual symptoms. I woke up and thought I had a stroke or lobotomy. The whole left side of my scalp and brain felt numb and I could not taste food, feel pain or feel any sensations or emotions at all and I had problems with bodily functions Id rather not get into. I went to the doctor said wait it out and hope it gets better I waited to July and only saw slight improvement taste and pain came back but these constant stinging spider web headaches kept getting worse and spread from my right scalp further into my head as some of the brain numbness went away. I also noticed from then on whenever I drank a cold drink and got a brain freeze I could only feel the brain freez on the right side were the headaches were worse. Eventually I asked to see a neurologist had a normal MRI in July but condition began to get worse and things like vitamins seemed to agrevated it. I never got my emotions back aside from a few flickers.

    Then in September 2010 the headaches on the right side of my heaf started fading out and symptoms began getting much worse. Eventually the numbness reached the center of my head and I developed total and complete insomnia. I went three days with no sleep it was not normal insomnia as I could not feel a tired sensation. I checked myself into a hospital and was released with 1o mg of ambien, 2mg clonopin and 200mg trazadone. I was still not sleeping and given a diagnosis of conversion syndrome which was then changed several times depending on which doctor I saw.
    I had a sleep study that only showed sleep with all those drugs from 10.40 pm until 5:40 A.M. I continued taking the drugs but the more drugs I used the worse all my symptoms including my insomnia became. Eventually I got off these drugs in October and began using just 100mg benadryl every night. I also had 2 brain SPECT scans at the AMEN center that showed brain trauma to my temproal lobes and right parietal. The damage looks like a tunnel going right through my head from my anterior temporal lobes inward.

    However The SPECT scan could not show the the hypothalmus and thalmus in my Brain which are repsonsible for sleep I am told only a PET scan can do that but can not find a neurologist who is willing to order one.

    I had another Sleep Study in December that showed only 149 minutes of sleep with 64 awakenings all stage 1 and 2 with 100mg of benadryl and 1 mg ativan.

    I tried hyperbaric oxygen which just caused ceratain problems to worsen and after the sessions i began getting areas of numbness spreading into my temples I then tried accupunture which helped with symptoms for a while and gave me some slight increase in sleep with drugs but then I stopped sleeping and after a few nights of total insomnia went back on ambien , then lunesta then remron. But the more of these drugs i took the worse my condition became i began getting horrible headaches and the numbness in my head spread along with these horrible crackling sensations that I would get in my head especially my left temple. Eventually I had to get off all drugs as my memory became too bad and I had a hard time finding my way around my house. I also began getting this numb area above my nose going into my head eventualy it spread and my whol forehead and scalp became extremely numb and the numbness goes deep into my head but is worse in my temples and certain pates on the top of my head

    I had another sleep study and had around 200 minutes of sleep with 205 awakenings. I saw the best sleep doctor in Boston and he has no answers for me I can no longer remember years of my life my whole head is raw and numb.

    I had neuropsych testing in August that showed I am in the lowest percentile for memory recall and 18th percentile for executive functioning. I scored well below average except verbal comprehension which I scored 98%.

    The neuropscyh doctor suggested a PET scan but no neurologist will order it.

    I also began developing muscle spasms and myoclonic jerks which happen several times a day.

    I am currently on 200mg of tramiprimine as well as a few supplements like melatonin and magnesium.

    I had some recent MRI results that show ventriculomegaly more advanced then it should be for my age.

    Neurologists just do not care and they seem like they are just waiting for me to die from this thing without trying to figure out what it is.

    I was put on nememda months ago but it began causing ripping pains in my head and just made my symptoms worse.

    Although other doctors have already told me its impossible the neuropsych doctor suggested looning into a group of protein missfolding diseases that inevitably cause death as unlikely as it sounds this is why I began taking the trimiprimine which has been shown effective against these diseases.

    What is going on and dose anyone know how I can get a PEt scan

  2. #2


    Every one keeps telling me what I am describing is a neurodegenerative disease which a dietary supplement can not cause but now I have all these abnromal tests my sleep EEGS show temporal lobe slowing and my latest EEGS show abnormalities not associated with hydrocephalus I have a SPECT scan showing Brain damage doctors just tell me could get better but my condition continues to decline and now I have ventriculomegaly in my MRI

  3. #3


    How is it going now? Did you get better?

  4. #4

    Default Hope22

    Hello Hope22. I actually took the same supplement. But it was horny goat weed and over a period of about 6 months it caused almost about all the same symptoms your describing. It was 5 years ago so things have got better but yes meds and other supplements seem to aggrevate my sleep bad. Everyone including friends and family just call me a hypochondriac. However, people say ive gotten better? Lol. It was bad. I still cant remember what really happened and visually perceive reality well. I got an MRI which was normal. EEG showed abnormal spikewave activity to my temporal lobe. A neuropsychological evaluation which scired my IQ as an 89 after almost graduating college. 23 at the time. I have came a long way but often have thought about getting a spect scan but why now? Anyways hope your doing better and can forget reaching out to forums cause docs sure dont care to reach out to us

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