SENSORY OVERLOAD Mikie, anyone Need Help

Discussion in 'Fibromyalgia Main Forum' started by 1sweetie, Apr 7, 2006.

  1. 1sweetie

    1sweetie New Member

    I just read the thread "Going off Clonzapam, any pointers?". By reading the post, especially from Mikie, I realized that so much of my problems are from sensory overload. It is causing me many problems with my health and with my relationships.

    Noise, being around more than one person, certain lights, smells, and motion around me has become unbearable to me on top of all the other problems with CFS/FM. This is driving a wedge into my personal & family relationships. It is becoming severe.

    In my past life, I was known for my smile and my nickname with my son & husband was sweetie. Now it is probably *****. The only way I have found to control this is to completely separate me from everyone. I now have used our bonus room that is actually a nice bedroom (and very quite) to sleep in and am finding that I have to spend more and more time there to survive. To help understand the problem with the main section of my home is that it has a 24 feet ceiling and it does strange things with noise. If a cabinet door is closed it is very loud yet you have difficulty hearing what someone says.

    My husband just bought a new laptop for me because my old one was giving me lots of problems. I had worked & worked on the old computer to get the light and type to a point that it did not cause me any harm. The new computer is High Def and it has made me so sick. My eyes hurt, I get nauseous, & a headache. I've done everything I know to do but I haven't been able to change it enough to allow me to use it for very long. It has given me a headache trying to type this. My husband just sees me as not being grateful and unable to please.

    I do not know what to do. My family does not understand and it is causing me to become a hermit in my own home. Not only am I extremely irritable but I need contact with people & I can't stay in a room forever.

    Per post that I have read on the board, I had asked & gotten a prescription of Klonopin to go with the cocktail of other drugs that have finally helped me find sleep. I read where Mikie used it for sensory overload and the doctor gave me a prescription for .5 mg pills to take 3 during the day hours if needed and 1 to 2 at night with my other meds. I have been taking 1 of the pills in the afternoon when I feel like I can't stand myself any longer and 1 to 2 at night. I had decided last night after a heavy, unhealthy discussion with my DH (who thinks I just can't be pleased) I was going to take more of the med to see if it would help. Now I don't know what to do.

    My mind races with thoughts. I didn't know that was not normal. I've noticed lately that my husband will just ask me to rest my mind. It made me realize what I was doing. I am going from one subject to another about everything that we need to do(and I guess since I'm unable) he feels that I am talking to just him. I jump from subject to subject with everybody.

    My husband is general manager of a company and when he is home, there is always a very loud walkie talkie, pager & phone going off. To me it's so very irritating. I am on pins and needles. I know that it is part of his job although lots of the calls are just people wanting to chat. I've asked him to please go outside with these calls. The other persons voice is like on a loud speaker in our home and it is like rubbing your finger nails on chalk to me. I don't know how to handle all of this. I know he is supporting the me (mostly) but these things make me sick. It is the same with cigarette smoke. Although no one smokes in the house, it's on his clothes & hair. He does smoke in the Hummer with the window down when I am in there. I can truly see where he is becoming quite annoyed with all of this. Most people would not understand what is happening to my body, in fact I do do not understand.

    I can't go to a "loud" restaurant especially when there are loud, unruly childred. Having my own childred,spouses,girlfriends & parents over for a birthday is tramatic for me. This use to be a big (happpy) deal for us. My lab that worships me too much becomes unbearable my evening because of his needs to play. I love him so much and I don't know if I can continue to keep him if I stay this sensitive.

    This man loved me and I loved him very much but this DD is tearing apart my whole life and yes, his also. This is also a problem with all my family members. I need their help so much yet I have to keep stepping away to survive.

    Please help me deal with this. I just don't know what to do.

  2. Mikie

    Mikie Moderator

    Talk to your doc. It certainly sounds as though your brain is racing and you have sensory overload. Your DH is right; you need to be able to get your brain to rest. Your doc may have to prescribe a different drug if three .5 mg. tablets are not handling it for you. When we are in the racing brain mode, we are almost like bi-polars are in their manic mode. It is miserable. On top of that, we cannot tolerate harsh lighting, movement, noise, confusion, touch, smell, etc.

    Good luck to you. BTW, I dissolve the Klonopin under my tongue to get it into my bloodstream as quickly as possible but for me, it only takes 1/4 of a .5 mg. tablet to handle my sensory overload. My doc and pharmacist have agreed that is a good way to take it for me. I don't know whether larger doses should be taken that way or not.

    In any case, if this isn't doing it for you, let your doc know. That's a fairly high dose. Problem with benzos is that if you ever want to quit taking them, weaning off is really hard. On the other hand, living with a constant state of seizure isn't good for the brain. Dr. Cheney believes it can cause premature neuron death. You need to find something which will help you. Klonopin does work better the longer you take it.

    Love, Mikie
  3. 1sweetie

    1sweetie New Member

    Thanks for the reply. I am so glad that you found my post. My prescription reads that I may take 5 per day. 3 .5 in the day and 1 to 2 .5 at night along with Oxycontin 20 mg,50 mg Trazodone, Mirapex .125 & 50 mg Lyricia. I would still wake up on the avg. of 2 pm until that small amount of Lyricia was added. It is scary to take so much medication at once but nothing was working and since I have gone into respiratory arrest due to medication after surgery my husband said no to Zyrem. The first night I added Lyricia I did not wake up until 10 am. I was in shock and of course very happy.

    I have not been taking the 3 .5 pills. I have been taking only 1 of them and waited until I was desperate. Occasionally I have cut the pill in half and taken it that way. Last night after a really tough time with the brightness and font size of the new computer, my husband's two way phone going off, my 2 year old lab deciding all day that I was his mate, and over reacting to everything, I realized that I was going to have to take more of the Klonopin than I had been taking or I was not going to have a spouse or a dog. Everything was so raw and as I told you in my post, the main living area of my house can be extremely loud due to the angles & height of the ceiling.

    The first thing I did this morning was to continue to tone down the light & reflection of the computer. I have improved it a great deal. The second thing was I read the thread where I saw every ones post on Klonopin and I did not know whether to start taking it as prescribed after I read what everyone was saying about the drug. I started the Oxycontin without knowing anything about the difficult time I will have coming off of it but I needed it then and know for the pain/sleep. It appears that I will have to do the same with the Klonopin. So far today I have cut 1 .5 pill in half and that has worked somewhat. My DH just reminded me again as I was talking to be calm. That is when I took the second half.

    You are one of the few people on the board that I remember posting about sensory overload. I forgot to put touch but that is a problem too.

    Please tell me how you live with this part of this DD. What causes it? I also have severe cognitive dysfunction.
    It's like the wiring to my brain and body is misfiring.

    I am open to all suggestions and I know that you have traveled this road for longer than I. My problems started after multiple surgeries/radiation. It took several years for my body to finally crash completely and when it did there has never been 1 good day in 3 1/2 yrs. Some days are just more tolerable than others. Is that how it is for you or do you ever have a clear, pain free, fatigue free day or 1/2 day?

    Thanks again for your help and I hope you are doing better.


  4. CinCA

    CinCA New Member

    I know all too well how awful sensory overload can be. I've had problems with it since a child, although it took my 4 y.o. daughter getting an autism dx. and going to occupational/sensory therapy for me to find out what it was. BTW, my daughter is sensory-seeking...loud, always moving, always into things, racing around...and while she is sooooo much better now (probably not even dx'able), it still was enough to just about push me over the edge. It was so horrrrrrible, and no one can understand, except maybe you and Mikie (my daughter also had severe colic and SCREAMED all of her waking hours her first 5-6 mo. of life). As much as I love my child, and I so do, I am never having another one. I just couldn't do it, although sometimes I feel so badly about it. At least my kiddo doesn't seem to have this one of my problems...she is so happy, joyful, and outgoing! Hubby jokes that she's taken my brain cells, energy, and happiness...he says it in jest, but so often, it kind-of feels true. I'm slowly doing better myself, though, which is good.

    I don't take any Rx's, so I can't help you there, although numerous posters have had success with Klonopin on this board. I take a homepathic remedy, Kalium Phosphoricum, that sometimes helps me "reset" when I am in major overload mode and feel like a pressure cooker. My doctor did tell me it's available at many natural/health food stores, and it shouldn't interfere with your other meds, if you want to try it out. Lately, even that hasn't helped me much, but in the past, it's worked well.

    One thing that has helped hugely has been, as strange as it may sound, exercise, esp. good, hard cardio like running. And when I get myself around to doing some yoga (even stretches alone with some soothing music, at night on our bedroom carpet) I feel much more "centered."

    It sounds like you have a lot of situational stressors you really can't change (hubby's smoking, reqmts. of his job, etc.). For now, do try to limit your time online and/or watching TV, as these aggravate my condition. Try to get outside if the weather allows...the sunshine and fresh air are also soothing for me, esp. if I can get to a less populated and quieter area. And just do what you can to survive.

    It's natural for you to want to "cocoon" yourself right now, and in some ways, it may not be a bad idea. My hubby finally has gotten to where he'll let me be if I need my space. Hopefully your family will be more understanding than mine, esp. the ILs have been (I know they think I'm crazy, but I don't care anymore). I wish you the best of luck, as I really can sympathize with your situation!

    [This Message was Edited on 04/07/2006]
    [This Message was Edited on 04/07/2006]
    [This Message was Edited on 04/07/2006]
  5. ephemera

    ephemera New Member

    Susan, I feel for you as I've been struggling with sensory overload for several years. Even now on the computer I'm using noise canceling headphones & very little light to read by. Some doctor's offices I can't go into because of their computer vibrations. It's awkward when you've waited 20-30-40 minutes in the waiting room, are finally shown to another room & have to tell the doctor or nurse you cannot stay there.

    I've found the phone doesn't ring much anymore with friends asking about dinner plans or getting together. i haven't totally isolated myself, but having dinner out is almost impossible unless I can do a very quiet late lunch before the dinner crowd gets noisy. I absolutely cannot do movies, as there the flashing lights & noise from the crowds is real terror for me.

    Even TV is difficult with flashing images, streaming text &
    very loud commercials -- all of which send me over the edge & I become dizzy & nauseous.

    Sirens from trains & emergency trucks & trains send pain down my spine, especially when I'm laying in bed.

    I wear heavy dark sunglasses everywhere. I can't wear most clothing as it hurts my skin. I cut off all tags as they rub my neck. I cut large pieces of foam core to block out all light in the bedroom (plus have rolling blinds, folding blinds & drapes).

    I don't think this behavior is crazy, it's self preservation. Neighbors & friends may not understand, but I'm thankful my partner really understands what it takes for me to get through a day.

    I haven't tried Klonopin yet. Maybe that's the next step.

    best thoughts,
  6. Joyce1

    Joyce1 New Member


    I can to relate very well to your situation. I used to live with my mother after I became disabled in one-bedroom apartment. When she would do the dishes I would go bonkers because of the clanging.

    I use a combination of ear plugs and noise canceling headset. Also , I find a Rieki helps. My mom does it on me and I feel my nervous system calm down right away. I believe that you can learn to do it on yourself also , I'm still working on that.

  7. Cromwell

    Cromwell New Member

    Is very hard. My son is autistic and has this too.

    Have you thought about wearing earplugs and tinted glasses, it can help a good deal.

    It does sound as if yours may be medication induced and it would be wise tot alk with your doctor.

    Also, buy those little round rubber stickers from Staples and put them on all the closet doors so the do not bang, try using soft throw rugs and heavier draperies-actually carpet is good for this too, even hanging taperstireson walls.

    We have done many of these things to help our son. Although he speaks loudly, he keeps his vidieo so low no one else can hear it but him, he speaks loudly to overcome the din he hears that we think is OK noise.

    I also think the EMF's with all the electronics could be bothering you. Try taking a Meclazine as it can help also with sensory overload(motion sickness pill OTC)

    I am sorry you are suffering.

    Love Anne C
  8. 1sweetie

    1sweetie New Member

    Cinca: I feel so for you. With a child that young and even with an improvement in her autism, I do not know what I would do now. Our son is 24 and in lives in the garage apartment over our garage that is separated from our home. For as long as I remember, he too has had some type of disorder. He can't be still. His leg is always bouncing and he has trouble concentrating. I thought he might be slightly ADD but the teachers said he was too smart. Go figure. He developed panic/anxiety attacks after his father left us and a couple of years later I got cancer. He was only 11 when his Dad had to leave us. He was my baby and so very close to me and now when he is at the house it can & often bothers me. This breaks my heart. I love him so much and he doesn't know what happened to the Mom that was always there for him. My daughter is 35, married and very grounded and calm. When we are together (just the two of us) we do fine. When I think of it now, I do fine when it is me and one other person.

    My parents and my aunts & uncles are clueless. I haven't been able to go to a family function for 3 years because of this DD. My aunts & uncles are really getting old and I want to go to the dinners they have. I am 53 years old and had never missed a Christmas Eve with them until 3 years ago. A few weeks ago, I found that just my aunts were going to celebrate a birthday at a restaurant at 2 pm. I finally made it but could not stay very long. Due to fatigue and the noise (did I tell you they are very loud people). It hurts so bad. How can anyone understand this? I don't understand it. I was a "people person". It is not just the sensory overload that prevents me from going. It is the unrelenting fatigue also.

    Thanks for homeopathic remedy. I will try to find it. I only shop over the internet now. Exercise is out. I am exercise intolerant. With any much physical movement, my EKG and breathing goes crazy. I miss that too. I try stretches and deep breathing. I miss my life. Going outside is a good suggestion and I just made a goal to make sure I spend some time outside if at all possible.

    "Cocoon" is the perfect word for what I am having to do to survive. I will use that as I try to explain it to my husband. I have just figured it out myself. I've just been reacting and did not even know what was causing the problem.

    Thank you for understanding and I am so sorry that you do.

    ek: I forgot to add driving(mostly riding) to my list. All the cars and noise and smells from the vehicles are now overwhelming. Does it bother you if you are riding and lights flicker through the trees? It has the same effect on me as flickering decorative lights. And cars that have headlights like mine (that bright blue color) make me turn my head. It's good for everyone that they don't want me to drive any more. I don't need to drive now.

    I also wake up like you described if I have to do anything or be around anyone for a few hours. Everything I schedule is for late afternoon so I can try to calm my body.

    I am going to start the Klonopin for daytime for sure now that I have gotten all of this input. If not for me, I must do something to make life more bearable for my family.

    I have to get off the computer now. I will respond to everybody else tomorrow hopefully.

  9. CinCA

    CinCA New Member

    I feel so badly for you, with all you have on your plate! At least it sounds like you and your daughter are close. That's good. Speaking of daughters, mine's been sick all week/home from preschool and has been getting more and more clingy/wanting to be held (very unlike her). I haven't gotten much's hard 'cause now I am not feeling 100% myself. Haven't even showered in 2 days, 'cause I've been handling her, and hubby isn't even home yet, as he is meeting with some people re: a potential land purchase (we just moved and are renting a home 'til we can buy land and build). Ugh!

    But I did want to tell you I found an online place that sells the brand of homeopathics I use, Unda/Seroyal (they are very good quality, my dr. says). What my dr. said helps with the sensory overload, for me at least, is Kalium phosphoricum, and I found it at an online store, LivingNaturally. I found the store by searching for the company, which again is Unda, now I believe owned by Seroyal. I dissolve one of the pellets under my tongue whenever I start to "feel the walls closing in", or rather for me, all my senses go into hyperdrive and I feel trapped/have to fight off a panic attack. I actually keep the remedy (what homeopathic "meds" are called) in my car, as I'm in the car a lot these days, on a very busy freeway, and everything around me is new (we just moved in early Feb. after living 8 years at our old place...completely new area, where I have never, ever been before). That's when the overload attacks seem to be esp. bad for me now.

    Best of luck, and I really hope you can get through all of this!
    [This Message was Edited on 04/07/2006]
  10. Mikie

    Mikie Moderator

    Is a physical/brain chemistry problem. I have taken stress reduction therapy and it does help to learn how to relax--to a point. Still, if our brains do not have enough GABA, we will experience a state of seizure in which everything is amplified and we are super sensitive.

    One thing which might help--do not wait until the sensory overload is making you crazy. At the first sign of it, dissolve a piece of the Klonopin under your tongue. Like with pain meds, it's easier to stop the problem early on than to try to overcome it when it has grown into a monster.

    Another caveat with the Klonopin--always have a little extra stash in case you cannot get to the pharmacy or they cannot get ahold of your doc for a refill. Refills on Klonopin are only good for six months regardless of how many refills the doc writes them for. In case of a national or regional emergency and medications cannot be delivered, you do not want to get caught short.

    Love, Mikie
  11. Mikie

    Mikie Moderator

    Some have taken the GABA with mixed results. If you post separately, you can ask those who take it how it is working for them. There can be a big difference between supplementing a chemical and reducing the reuptake of it in the brain. I'm not completely sure which of these Klonopin does. It's been a long time since I researched it.

    Love, Mikie
  12. 1sweetie

    1sweetie New Member

    I've struggled the last few days and am getting sick as I try to post. I am going use all the suggestions that are possible. I can not change the design of my house though. The floors are hardwood and tile. We chose this house because of the openness and the tremendous amount of windows. I have always had to have to purchase expensive sunglasses and I used them today in the house. I can't use them for the computer because I have to have reading glasses.

    This is making so much sense to me know. All the unexplained nausea,irritabiltiy, the motion sickness,etc.etc.

    What is Gaba? I was taking Neurontin and it helped with pain but all medicines that deal with the my brain chemicals cause me a great deal of problem. I am forced to take low doses of Mirapex and Lyrcia for sleep but I CANNOT increase the doses. Antidepressants are bad for me and Cymbalta made me more depressed after taking it a few weeks and if I forgot it over 3 hours, I was so irritable and even suicidal. The doctors keep trying to put me on this kind of meds but I can not tolerate them. Is this part of sensory overload or is this something else?

    I am so sorry to hear of each one of you having to deal with this. I need to be thankful that I do have a safe place for part of my day. Someone suggested Reiki. I have had some energy work done during a massage before so I made an apppointment to try that. I actually don't understand or know that much about it but if it will help I will try.

    [This Message was Edited on 04/10/2006]
  13. Mikie

    Mikie Moderator

    Are both antiseizure/antispasmodic meds in two different families. There are other meds out there which can help with the seizure state and you could try supplementing with GABA, but I would talk to the doc first. GABA is what keeps the brain in balance between seizure and coma states. I'm going to go to the library here and get Dr. Cheney's article on Klonopin. It will help explain the sensory overload and how the seizure state can prematurely kill off our brain's neurons. I do believe we have to get the seizure state under control.

    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."

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  14. 1sweetie

    1sweetie New Member

    Thank you so much for your input. I am taking using most of the suggestions you gave.

    Mikie: It is so strange that you mention Neurontin. I took it for so long but was taken off of it and I am so thankful that I no longer take that drug. It was given to me for pain control & it worked. My cognitive, depression, speech and other brain functions plummeted. I did not know that it was caused by the medicine. I have found that all medicines like my Mirapex, AD, anything that deals with my brain chemicals are having dramatic effects on me, even to the point of severe suicidal thoughts. I have to take very low doses of Mirapex & Lyricia for sleep. I wish I could get off all of those drugs but with Restless Legs, I can't at the present.

    Acesnanna: I had been off Magnesium for a few months. I had started taking other supplements and was rotating as Stormy suggests. I started back immediately and am glad I did.

    Cromwell: As soon as I can get someone to get that felt, it's going on my cabinets. I checked them and most of the felt that was on them originally was gone. I will be getting Meclizine for motion sickness.

    EK: I have found found info about acupuncture and am hoping to setup an appointment. I will try energy work this week hopefully.

    joycel and Ephemera: I totally relate to your issues. The TV has been a real problem. I have been complaining about TV commercials beings so loud. I keep the remote in my hand and have to lower the volume constantly. I have to turn my head if there are streamers on the screen. The sound of dishes touching each other try me crazy.

    If I left anyone or anything out, I apologize. My cognitive problems are rather bad and I can't remember. I wish there was a way to see the post and be able to respond at the same time. I have to make notes to answer or print the thread and I am using too much ink in my printer to do that.

    If you have more suggestions, please let me know.
  15. 1sweetie

    1sweetie New Member

    Thank you for the info. I just found your post and I will do the research. I too can't stay on the computer very long now. I did a quick search and read a couple of the sites (briefly) and they seemed to relate to children. Can you give me more direction??? I will try again later in the day to do more research.

    I hope you are feeling better and thank you for leading me in a new direction.

    Something has to give. I am really suffering with this and this is making other that do not deserve the repercussion of my reactions to suffer.

    I am trying everything. Today I will try Reiki(???).

    Again thanks to all that are helping me with this.
    [This Message was Edited on 04/22/2006]
  16. 1sweetie

    1sweetie New Member

    I have found that your current suggestions are so true. I read the symptoms of ADHD and they are similar to the symptoms that I use to describe sensory overload.

    Recently, I began to do a few of the very important issues that you mentioned. When I am alone, I now watch very little TV...especially if I am trying to use the computer. I recently purchased several relaxation tapes. I play them when I am on the computer (again I can only do this when I am alone), before I go to sleep, and when I have my morning time outs. I need head phones. I try to spend several waking hours by myself. I set the dishwasher on a timer to run while I am asleep. I close the doors to the laundry room to try to block how the sounds of the washer and dryer.

    I am also using the Klonopin. It has made so much difference to me.

    I am so appreciative of all the information that every one has shared with me. I am seeing some improvement and I am so grateful

    I have started practicing EFT therapy also. You tap on certain area of your face and body to get a positive energy flow. I also found that the my entire eye area was extremely sore to touch. There were tiny knots that encircle both eyes. My massage therapist is working on this. I also read an article how to do it. The article stated that if a person did not correct this type of problem, it would lead to serious eye disease as we get older.
  17. Mikie

    Mikie Moderator

    Now, I believe I have adult ADD (I'm too tired for the hyperactivity part now :)

    A low-level state of seizure isn't the only thing which can cause sensory overload but I believe it is what has caused mine. I've complained so much lately because I've been sick since Easter with one thing after another, but I'm still better overall than I used to be. I've noticed for months now that I am needed Klonopin less and less during the day for sensory overload. I still need it to sleep and when I tried cutting down on the night time dose, my symptoms got worse, including sensory overload.

    Remember the old Black Angus steak house restaurants? Way back in my 20's, I noticed that I couldn't eat there. They had these lights over the tables which produced a sickening yellow light. Almost as soon as I sat down, I would start to get dizzy and feel nauseated. Noise also bothered me. If someone figeted in the seat behind me at the movies, it nearly drove me crazy. Early hints of things to come.

    I can remember sensory overload way back into early childhood. My kindergarten teacher sent home a note to my Mom that I never finished anything before I was bored and wanting to move on to something else. I thought it was a compliment; I was so smart that I didn't need to finish something before I had it figured out. Later testing showed I was gifted, as are many kids with ADHD. School drove me nuts and I drove the teachers nuts.

    Love, Mikie
  18. 1sweetie

    1sweetie New Member

    Yes, ADD makes sense. As a child though I was never hyper. I was sick with swollen glands and as a teenager, I had a severe case of Mono. The only reason I was not hospitalized was that my Mom managed to get food in me. I was out of school for a few weeks and severely fatigued for many months. My Mom says I have never been the same since then and I agree with her.

    I have been fighting certain issues for a long time too. Lighting was and has been a problem for years. I had to work in an office with fluorescent lights. I had them to change the bulbs in my office to the less offensive ones and often I would not turn off all the lights. There were periods that I wore shade glasses in the Bank. I could never go to church to the Living Christmas Tree because of all the flashing lights. The year someone talked me into going, I had to keep my head bent down with my eyes closed. I hope everyone was thinking I was praying and I was...praying that it would soon stop. As a teenager, I could not go to any clubs....strobe lights are killers. I have always had to have good sunglasses...nothing cheap for me. If I broke or lost a pair, I had to replace them immediately. I have to have the kind that wraps to cover the entire eye. I can't stand if someone starts playing around with a flashlight. The light makes me sick and gives me migraines. It sounds like you identify.

    Smell has also been an issue for a very long time. Any type of chemical, floral, cigars, cigarettes now (can't believe I use to smoke), certain cleaning supplies, gasoline, & perfumes, do the same thing as lights.

    Noise is a new problem though. I use to enjoy music and would play it quite loudly in the car. Now, well you know how that is also.

    Motion use to be a problem when I was young but that got better. I have never been able to ride amusement park rides that go in circles and when I had to set in the back seat of a car, there was trouble. I have reverted back to having trouble with motion sickness at times. That issue seems to cycle more than the others that are constant.

    I can also can not finish anything. That is also not a new problem for me. The problem with that is that I want everything to be perfect and that is not possible. Also when I was in grade school, they called my parents to tell them I had scored the highest IQ at that time of any student they had tested. I don't know what happened to that though. Maybe it is not a good thing to be smart. Something definitely changed in my brain.

    Even with all my history of issues, I was not prepared to be where I am now. By putting the pieces of the puzzle together has helped me find some tools to use though and I credit that to the board and especially you. For the most part, the last 2 to 3 weeks, I have been the best that I have been in 3 years. Small steps are huge to me.

    I am in it with good company though, Mikie! I regret that you are having other issues though. I added a product called Juice Plus to my daily supplements and I have been taking it for 2 months. It is a food supplement and I have felt better. It may be the placebo effect but I am afraid to change anything since I am finally getting some relief.

    Did you get much rain from the storm? It's on the way to NC. I can already feel the effects. We've had lots of storms lately and it is not good for our bodies but my yard and plants are happy. We were in a severe drought a few weeks ago so rain is good.

  19. starmom

    starmom New Member

    I have Sensory Integration Disorder, as do all 3 of my kids. My youngest is bad enough to be diagnosed and has the option to have special ed and occupational therapy at school, though right now he doesn't need it. He is doing fine with therapy at home.

    There are some great books out there. The bible on this subject is "The Out of Synch Child". The author also has a book called "The Out of Sync Child Has Fun". The activities and books talk about kids, but the information has helped ME greatly. The other book you need to read is "Too loud, too tight, too fast, too bright" or something similar. It is also very helpful.

    There is a lot you can do with this to help yourself. Paying attention to your sensory diet can make a big difference. Xanax helps me out too.


  20. Mikie

    Mikie Moderator

    Interesting stuff. I definitely think the quality of our health has a bearing on the sensory overload issue. I still have it and every now and then, something will absolutely send me over the edge, but it is rare these days.

    As much as I've been complaining since Easter that I can't seem to shake whatever is making me sick, I'm still better than I used to be. I do think that taking the Klonopin has had cumulative effects. Seems the longer I'm on it, the better it works.

    Just as stimulants calm down children with ADHD, the Provigil had a paradoxical effect on me and made me groggy and sleepy. I believe that is due to the adult ADD.

    Sweetie, the rain is pretty much gone. The storm didn't do much except some mild flooding here in FL. It may cause some flooding as it passes through the Carolinas. It's been a pretty fast moving storm and that should help.

    Love, Mikie

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