Anyone sensitive to noise, smells, lights etc

Discussion in 'Fibromyalgia Main Forum' started by eyesofblue, Dec 5, 2005.

  1. eyesofblue

    eyesofblue New Member

    Hi all

    Is there anyone out there in fibro land sensitive to smells, loud noises and bright lights.

    Any loud noise drives me to distraction. I can hear my watch ticking in a room full of people and its torture.

    The cinema is another nightmare, the film is drowned out for me by people eating crisps, popcorn etc and the wrapping being russled, its made worse by the fact that Im the only one who can hear these noises.

    Smells are the worse I can smell things no one else can and im told its all in my imagination when I know it isnt and Im just causing problems.

    Is there anyone out there suffering any of the same sympoms.

    [This Message was Edited on 12/06/2005]
  2. getfitat40

    getfitat40 New Member

    I have the most sensitive sense of smell...I am constantly smelling things that others do not smell. Not such a bad thing for good smells - like chocolate - but B.O. is especially troubling for me...I always tease that I should have become a nose for a perfumer but it would have made me sick....good luck
  3. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    Sounds like adrenal exhaustion and MCS (multiple chemical sensitivities). It's much worse than the fibro for me.

  4. windymountain

    windymountain New Member

    Hi! I'm new here as of today. I have often told people I could have been a drug-sniffing dog if born into the canine world. I smell things no one else smells and they think I am imagining things. Lights sometimes bother me, too. I have to cover my alarm clock because the brightness can disturb my sleep. I have a blanket hung over my bedroom blinds, and I make my husband shut the bedroom door so the morning light doesn't wake me. I must wear sunglasses outside or I get headaches. My hearing is sometimes ridiculously sharp. I can hear such things as high-pitched computer monitor noises that will make me crazy. And then other times, I need people to repeat things. How odd. And we get to live like this long? But I am learning to adapt to it.
  5. happycanuk

    happycanuk New Member

    smells drive me crazy. Perfume, scented candles etc. Love to go visit little gift shops, but they just make me sick. Another thing I can't tolerate is fabric. My eyes burn and I get a raging headache.
  6. Empower

    Empower New Member

    My husband is hard of hearing and always has the tv turned up loud, and I can't stand it!

    I also smell things and I'm really bothered by smells, that nobody else notices

    And just the other day, we were in a store, and I said to my husband "are these lights bothereing you?"
  7. lenasvn

    lenasvn New Member

    I am the same, I get "overloaded easily, and it's apparently common with FM because of our neurological dysfunction. I get queasy from some smells and yes, I can smell things others can't! Came in to Dairy Queen one time and I refused to eat there when I smelled the place. I knew it wasn't clean, and I suspect the dairy products would have bacteria in it. I felt queasy and my ex. husband rolled his eyes. I have learned to tunr off sounds when my I feel the overload, ask my children to have a silent minute, etc. I get migraines from light during the summer, even with sun glasses.
  8. Mikie

    Mikie Moderator

    All our senses can become overwhelmed. Often those with sensory overload also suffer anxiety, racing brain, RLS, muscle spasms, and insomnia.

    People with our illnesses can suffer from a slight state of seizure. Klonopin or Neurontin are usually the meds of choice for this. SSRI and SNRI antidepressants can exacerbate these symptoms.

    Dr. Cheney has an excellent article on Klonopin and talks more about these symptoms. I'll go get it from the Library here.

    Love, Mikie

    Dr. Paul Cheney Discusses the Benefits of Klonopin
    by Carol Sieverling


    Editor’s Note: The following is based on a recent interview conducted by Carol Sieverling with Dr. Paul R. Cheney, M.D., Ph.D., and the article "CFIDS Treatment: The Cheney Clinic’s Strategic Approach" (CFIDS Chronicle, Spring 1995). Dr. Cheney gave permission to share this information, but has not reviewed or edited it.

    Many CFIDS specialists prescribe the drug Klonopin. In the October 1999 issue of The Fibromyalgia Network, nine CFS/FM specialists summarized their most effective treatments, and six included Klonopin. Interestingly, the three who did not are primarily FM specialists.

    Dr. Cheney prescribes Klonopin to address a condition associated with CFIDS called "excitatory neurotoxicity." To explain this condition to patients, he draws a line with "seizure" on the far left and "coma" on the far right. A big dot in the middle represents where healthy people are when awake. A dot somewhat to the right of the middle indicates where healthy people are when asleep – slightly shifted toward coma. He highlights in red the left portion of the line, from seizure to the middle, and labels it "Neurotoxic State" (damaging to the brain). He highlights in blue the right portion of the line, from coma to the middle, and labels it "Healing State."

    In CFIDS, an ongoing injury to the brain shifts patients toward seizure. A dot to the left of the middle, marked "injury," represents the position of CFIDS patients. This puts us in the red "Neurotoxic" zone. When we shift toward seizure, we often experience "sensory overload." It’s as if our brain’s "radar" is too sensitive. Our neurons (nerve cells) are sensing stimuli and firing when they should not. This causes amplification of sensory input. Light, noise, motion and pain are all magnified. At the beginning of their illness, many patients report feeling exhausted, yet also strangely "wired." The "wired" feeling is the slight shift towards seizure that occurs as a result of the excitatory neurotoxicity.

    Cheney frequently uses the term "threshold potential" when discussing excitatory neurotoxicity. (Think of the threshold - bottom - of a doorway. The lower it is, the more accessible it is. When it is at floor level, everything can enter. When it is raised, access is restricted to taller people. If it is too high, no one can enter.) Threshold potential refers to how much stimulus it takes to make neurons fire. If the threshold potential is too low, even slight stimulation is "allowed to enter" and is detected by the neurons. This causes the neurons to fire, resulting in sensory overload. If the threshold is dropped to nothing, all stimuli get through and the neurons fire continuously, resulting in a seizure. If the threshold is raised, only stronger stimuli can make neurons fire. A healthy person’s threshold potential naturally rises at bedtime, promoting sleep. If the threshold potential is too high, you feel drugged or drowsy. If the threshold potential is raised extremely high, coma results.

    Two receptors in the brain, NMDA and GABA, determine the threshold potential. During the waking hours of a healthy person, NMDA and GABA should be equally active. This balances the person in the middle of the seizure/coma continuum. NMDA stimulates, and GABA inhibits. If NMDA increases, one moves toward seizure. If GABA increases, one moves toward coma.

    In CFIDS, NMDA is more activated than GABA, lowering the threshold potential. This causes neurons to fire with very little stimulation, resulting in sensory overload. This condition of excitatory neurotoxicity is dangerous. Dr. Cheney emphasizes that in an attempt to protect itself, the body will eventually kill neurons that fire excessively. He states that brain cell loss can result if this condition isn’t addressed.

    How can the brain be protected against excitatory neurotoxicity? Klonopin. This long acting benzodiazepine has been Dr. Cheney’s most effective drug for CFIDS over the years. He believes that Klonopin and the supplement magnesium may be two of the most important treatments for CFIDS patients because of their neuroprotective qualities. He recommends two or more 0.5 mg tablets of Klonopin at night. Paradoxically, very small doses (usually a quarter to a half a tablet) in the morning and mid-afternoon improve cognitive function and energy. If the daytime dose is low enough, you’ll experience greater clarity and think better. If the daytime dose is too high, you’ll become drowsy. Adjust your dose for maximum benefit, taking as much as possible without drowsiness. Adjust the morning dose first, then take the same amount mid-afternoon if needed, then take three to four times the morning dose at bedtime. Dr. Cheney recommends doubling the dose during severe relapses.

    Dr. Cheney most frequently prescribes the combination of Klonopin and Doxepin, along with the supplement "Magnesium Glycinate Forte." Magnesium Glycinate alone is a good choice for the more budget minded( sells it as "Magnesium Plus".) A common dosage of magnesium is 200 mgs at bedtime. Too much magnesium can cause diarrhea, though glycinate is usually the best tolerated form.

    Cheney prescribes Doxepin in the form of a commercial elixir (10mg/ml). At low doses, this tricyclic antidepressant acts as a very potent antihistamine and immune modulator. Doxepin acts synergistically with Klonopin to assist sleep, and may improve pain. Patients tend to be very sensitive to Doxepin, which can cause morning fog and fatigue if the dose is too high (5 to 10 mg or higher). He recommends starting at two drops a night and gradually increasing the dose until "morning fog" becomes a problem. Most patients can’t tolerate more than half a cc.

    On a handout entitled "Neuroprotection via Threshold Potentials," Cheney lists six substances that can protect the brain. Under the category "NMDA Blockers" Cheney lists:

    1. Parenteral magnesium and taurine (intramuscular injections of magnesium and taurine, usually given with procaine) 2. Histamine blockers (Doxepin Elixir) Under the category "GABA Agonists" (increases GABA) Cheney lists: 3. Klonopin 4. Neurontin 5. Kava Kava 6. Valerian Root

    Klonopin is taken "day and night"; Neurontin "night, or day and night"; kava kava “daytime only”; and valerian “nighttime only.” The first four are by prescription, the last two are herbs. In my limited experience, only certain patients are put on magnesium/taurine injections, and then only for a limited period before switching to oral supplements.

    Many myths abound concerning Klonopin. When asked about these myths, Dr. Cheney shared the following information.


    When the generic Clonazepam came on the market, many patients switched to it because it was less expensive than Klonopin. Cheney then began hearing that most patients had to take more Clonazepam to get the same effect. Generics aren’t exactly identical to the original products, and with most drugs the slight variations don’t matter. However, most CFIDS patients can tell the difference between Klonopin and its generic form, Clonazepam. Most find Klonopin to be more effective.


    Dr. Cheney was adamant that Klonopin is not addictive. In treating thousands of patients, he has never seen a patient become addicted to Klonopin. He reviewed the definition of addiction, stating that it involves: (1) psychosocial disruption, (2) accelerated use, (3) inappropriate use, and (4) drug seeking behavior.

    Dr. Cheney said a case might be made that Klonopin is habituating. It’s true that it can’t be stopped suddenly. You must taper off of it gradually. However, he was cautious about even calling it habituating. The process of tapering off a drug is not the same thing as withdrawal, a term that implies addiction.

    Dr. Cheney said to keep in mind that Klonopin is given for a physiological problem – excitatory neurotoxicity. It’s prescribed to adjust the threshold potential: to keep neurons from firing inappropriately and being destroyed. He stressed that Klonopin should never be given unless you intend to raise the threshold potential. He stated, "Problems arise when you begin to use benzodiazapines for reasons other than threshold manipulation." However, CFIDS patients have a "threshold potential aberration" and need Klonopin (or something similar) to avoid brain injury. Dr. Cheney has never seen a recovered patient have difficulty coming off Klonopin. He stated, "When you no longer need the drug, coming off it is very easy."

    On the other hand, trouble arises when someone who still has an injured brain tries to come off Klonopin. It’s like a thyroid patient stopping their thyroid medication. Dr. Cheney warned, "All hell breaks loose". However, it’s not because the drug is addicting, and it’s not withdrawal. The condition still exists, and the body lets you know it has a legitimate physical need for the drug. Cheney stated, "When a CFIDS patient who is still experiencing the underlying mechanisms of brain injury goes off Klonopin, there is a burst of excess neural firing and cell death. That’s the havoc we hear about that is mistakenly called withdrawal."


    Dr. Cheney said that he honestly doesn’t understand this concern. He believes Klonopin might disrupt the sleep of people who take it for conditions other than the threshold potential aberration found in CFIDS. He also acknowledged that if you are looking just for drugs to facilitate sleep, Klonopin is certainly not the first one to come to mind, nor should it be used to induce sleep in "ordinary" patients. It’s not a sleep drug per se. However, a large part of the sleep disorder of CFIDS is excitatory neurotoxicity and the resulting shift toward seizure. If you treat this condition with Klonopin, then you have treated a large part of the sleep disorder in CFIDS. Most importantly, he said he simply does not see stage 4 sleep disruption in his patients on Klonopin.

    Towards the end of this discussion on Klonopin, Cheney smiled, and remarked, "But suppose I’m wrong about the brain injury and the threshold potential aberration and the shift toward seizure? What if I’m wrong about your need for Klonopin? I’m absolutely sure I’m right, but what’s the worst case scenario? Do you know what long-term studies on Klonopin have shown? Reduced incidence of Alzheimer’s Disease. Alzheimer’s Disease is a complicated and convoluted way of knocking out your neurons, and Klonopin protects your neurons. Now it’s believed that Klonopin didn’t actually stop Alzheimer’s. It just delayed its onset so long that everyone died of something else before they ever got it - which is to say you won’t get Alzheimer’s. You’ll die of something else first."

    The last question Cheney addressed concerned the dose: what happens if the dose is too high? He said the only down side was that if you took a little too much (we are not talking overdose here) it would shift you toward coma on the continuum. It would shut your brain down to some degree, and thus impact your ability to function. This is inconvenient, but it’s not harmful. In fact, it shifts you into the "healing state" on the continuum. You may feel like a zombie, but your brain is protected and your neurons are not getting fried. However, not being able to function isn’t an option for most of us, so we need to find the maximum dose that doesn’t make us drowsy.

    Dr. Cheney emphasized that Klonopin, Doxepin, and magnesium are very, very good at protecting the brain from cell death due to excess firing. However, they can’t stop the underlying mechanisms of CFIDS that are injuring the brain in the first place.

    Though it can’t stop the underlying mechanisms causing the injury, Klonopin can protect your brain and keep your neurons from being destroyed. Then, as Cheney put it, "When you come out on the other side of this, you’ll have more of your brain left."

    [This Message was Edited on 12/05/2005]
  9. XKathiX

    XKathiX New Member

    Any cologne in a spray form sends me over the edge and into an asthma attack, but I'm okay with candles, oils, and incense.

    Headlights are very hard on me - I bought those yellow glasses that you can wear at night and they help.

    Noise has been my biggest issue. In the book Highly Sensitive People, they talk about a trait that is sensitive to noise. If more than one person is speaking in a small room (like a conference room at work), or a child is loud (even happy screaming), I feel like I'm going to lose my mind. I really just want to stand there and scream.

    The other noise the is horrible is when people have their car stereo loud and it's all bass - I don't necessarily want to scream but on several occassions it's made me burst into tears.

    But I have to have the t.v. up loud because I have trouble hearing :)

  10. Shannonsparkles

    Shannonsparkles New Member

    ... if he's wearing deoderant. I tell him he's wearing "Shannon repellant."

    What's worst for me is the sounds. In the evening I can watch some TV - QUIETLY - but in the day I need utter stillness.

    The smell of ground beef cooking is gross. Even before I got really sick, it was gross to me. Also beer. If someone's drinking beer, it feels like the room is dense with beer fog.
  11. sdown

    sdown New Member

    Something is causing your neuro-toxicity. Whether its been exposure to metals such as mercury, aluminum, arsenic, nickel, etc. they can all cause irritability when the brain has been over-exposed to these toxins. I was tested for metals and this was my diagnosis. I had my mercury fillings removed. I went thru DMPS treatment which is a type of chelation treatment to remove the toxic metals. I was hooked up intravenously to this drug called DMPS then the next day hooked up to an IV with a Vitamin bag to boost my immune system. When you go thru a DMPS treatment it removes all the metals from your body the good and the bad so you have to go back the next day for a vitamin replenisher of the good minerals. Ive had about I think 6 of those treatments. They helped me tremendously with brain fog. After each treatment there was an improvement. Doctor said I was allergic to the fluoroquinolones type of antibiotics. Anyone who has a high toxicity level should be very cautious has to what drugs they take. Im on neurontin. I started 4 years ago with 300mg a day. Now Im on 100 mg every other day. You have to gradually come off neurontin and must be supervised by a doctor or else you can get a seizure if you quit cold turkey. But neurontin has certainly been a blessing for me in coping with irritability and sensitivity to noise. Im still sensitive to noise but certainly Im more tolerant than I used to be. Hope this helps.
  12. kch64

    kch64 New Member

    Yes, I definately have all those especially lights and smells.

    yuck to smells.
  13. millennia

    millennia New Member

    The sound of the door in the hallway outside my class makes it impossible for me to concentrate. Noises can make me cry. I can barely be around my brother's kids they're so loud. I am so sensitive to smells, good and bad. I've been known to throw up from the smell of certain foods. And the lights in the same room are sometimes fine and sometimes drive me crazy. I'm so sensitive to everything. I drive everyone I know crazy.
  14. 1sweetie

    1sweetie New Member

    Do you ever feel like you should live in a bubble??? I bought a new car and for months and I got a migraine whenever I got in it. I avoided that car as much as possible and left the windows opened unless it rained. Does it bother anyone to be riding down the road and as the sun shines through trees on the side of the road make anyone else sick? How about flashing lights like when the scenes change on a TV or have to close their computer when you schroll down the screen? Do you get pain when someone touchs you lightly and rubs you for a few seconds. Do you hold your breath and run through the perfume sections of department stores? That is better now that I don't have the energy to shop anymore. Can you be in a car when it has to have gas? I can't go inside restaurants anymore because of unruly,loud and screaming children or they are playing the music so loud that I want to scream or put duck tape over their mouths.I do better when I am alone at home and can control my enviroment. There are days now that I don't turn on the TV until my husband comes home and I hate to run the dish washer, washing machine or dryer.
  15. dorabella

    dorabella New Member

    Can't say that I'm sensitive or allergic to any of these phenomena, but I do get really irritated by the following:

    loud traffic flow (especially motorbikes and buses)

    personal stereos

    loudspeaker announcements

    screeching teenage girls (I work in a university - they are everywhere!!)

    people who are noisy eaters (usually with their mouths open!)

    people walking close behind me or alongside me who won't overtake

    people walking in front of me who veer all over the place or are too busy talking on their mobile to notice what is going on around them

    the smell of my downstairs neighbour's Alsatian dog when it's been out in the rain

    I could go on and on and on and on..... On a bad day I can't bear to be around anyone or anything. I try to stay at home where I can control my surroundings.

    I call it brain pollution - too many sounds, smells for the senses to deal with!!

    [This Message was Edited on 12/06/2005]
    [This Message was Edited on 12/06/2005]
  16. onnaroll

    onnaroll New Member

    noise and lights are my number one complants! we live by a railroad track and some of them drivers are terribly disrespectful about blowing there horns all hours of night and day! Grrrrrrr anything loud bothers me. lights bother me too i usually push them behind me or in front of me so there not in my eyes. also airasols bother me and perfumes, really just anything used in the room im in. get on daughter about her perfume all the time.
  17. eyesofblue

    eyesofblue New Member

    Thank you so much for all your replies.

    Its good to know im not insane or alone.

    Thank you thank you thank you
  18. littlebrownwren

    littlebrownwren New Member

    Noise is getting really bad.My daughter often calls when she is empting the dishwasher and it sounds like she is banging pans right next to me and it hurts.
    I have began to startle and jump at some other wise small noise.
    On the other hand I notice I am saying "WHAT" really often. Their words seem garbled.
    Is this a new symptom of this DD?
  19. caroleye

    caroleye New Member

    I'm a "universal reactor" to all noise, light, chemical smells, etc., and have had to create a "bubble house" with blackouts, air & water filters, plus I wear sunglasses always.

    The Klonopin & Cal/Mag have helped me somewhat balanced, along with other calming products, but until I get rid of some of my heavy metals & balance my brain chemicals, I'll be living this way. My biggest culprit brain-wise is too much acetylcholine which speeds everything up; thus increasing our senses, along with our bodies.

    Finally they're getting to the "brain"!! Remember in the old, old days when they were doing those electrical shock brain treatments. Unfortunately they didn't know what they were doing, and left many braindead. But Linus Pauling knew all about this, and there are Dr.'s who are just now releasing studies.


  20. labrat

    labrat New Member

    When I first developed CFS, I could hardly stand to work because it was so noisy and the fluorescent lights exhausted me. My co-worker's typing in the office just drove me crazy and I had to turn off most of the overhead lights because they made me feel more ill/tired. I couldn't watch any tv or listen to the radio for about a year and a half because the noise made me feel physically exhausted and ill. I still can't listen to music, but can usually watch tv unless I'm having a bad day. Going to the grocery store was torture because of the noise and bright lights.

    I take 1/4 of a 0.5 mg dose of klonopin 2 times a day and think that helped with the noise/light sensitivity. So, just wanted to let you know that you're not the only one with this problem.