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

  1. 1sweetie

    1sweetie New Member

    I have posted on this topic before and got some good advice. Mikie as always understands this issue as well as many others on the board.

    I did began using my prescription of Klonopin even during the day. I did improve some for awhile if I was careful.

    Now I am impossible to live with (or so I am being told). EVERYTHING is triggering the problems. It is like you have a empty cup and any thing such as lights, noise, movement, & motion begins to build during the day until I feel like I am going to explode. I do feel like I need to be in a bubble.

    My husband recently replaced a light bulb in the kitchen. Immediately, I get sick. It was not a florescent but it was an expensive bulb that gave off a light with colors.He or my son noticed. No one believes that a person can be that sensitive. As if I would want to get sick because a light bulb has been changed.

    I have tried to explain to him that if he thinks he is miserable...how do I feel.

    In fact, today on our 25th anniversay, he just announced that he was moving out and taking the dogs so that I could have all the peace I want.

    I read an article last night and the description of what is happening to me is like a person with seizures. I have been told through testing that my cogntivie issues are because of the frontal lobe and my executive function is not working properly. No one tells me why or seems to know. I know Cheney's theory is that our brains are having mini seizures. I think mine has gone to more than mini.

    Does anyone else have this problem to this extent and please let me know if you have tell me what else to do? At this moment I have sealed myself away in the bonus room with no noise and that way no one bothers anyone else. This is not a life. I just can't hold on much longer with no support and a problem this major. I am told I am the problem.

    As you all know this is just part of our problems, but gradually this has become a major issue here.
  2. Michelle_NZ

    Michelle_NZ New Member

    I'm so sorry that things have gotten to this stage. I suffer from noise sensitivity, but after reading your post, it made me realise that it could be alot worse.

    I have to wear earplugs when I sleep and I cant tolerate busy noisy environments, or even people talking while the TV is on. In fact, on one of the recent visits to my partners parents, I had to wear the earplugs while we were watching TV.

    I'm wondering if you could wear ear plugs around the house when the noise gets to be too much? And maybe a pair of dark glasses?

    Take care

  3. UnicornK

    UnicornK New Member

    I am so sorry things have gotten to this place. My sensitivity isn't near as bad as yours, and I have an understanding husband, but I had to reach out to you. I keep fearing that mine will get worse (they have somewhat) and what I could do about it.

    My psychiatrist doesn't want me on Klonopin because I tend to abuse it. (That's how bad my FM/CFS has gotten...the Klonopin helps the pain because I can't take anything else.)

    The ear plugs and sunglasses are an idea. I wear sunglasses to the grocery store and that helps with the overload there.

    I hope things get better for you.

    God Bless.
  4. shootingstar

    shootingstar New Member

    I am wondering if a low dose of an anti-seizure medication such as Lamictal might help. Have no knowledge of this, just a thought, but it might be worth asking about. I'd definitely talk to a doctor.

    Really hard to live around. Hugs.
  5. 1sweetie

    1sweetie New Member

    I was just prescribed that drug last week. I have taken it for 7 days at 25 mg. It is a dose pack. What do you know about the drug??? Do you have any experience with it? I am so scared of meds like this. I can't take AD's or I can't take Neurontin and have to take the smallest dose of Mirapex for RLS so this was what they wanted to try. It scares me because there is a black boc warning for people that are feeling "less than perfect" to be sure and tell your family to watch you. I told you the reaction I got today. That is not helping me at all. Because of looking for info on that is where I located the info on epilepsy and how it causes all of these sensitivities that I am describing.
    [This Message was Edited on 08/02/2006]
  6. netnut

    netnut New Member

    I take lamictal for bipolar disorder and it helps me alot. You do have to start it very slowly. Many people think that bipolar may be related to seizures in the brain.

    I have had very good luck with lamictal and no adverse reactions.
  7. 1sweetie

    1sweetie New Member

    I am not bipolar. I do not get the highs. I was told that for people that did not do well on SSRI's that this drug may help. I really hope so. How long have you taken it, how long did it take to feel a difference and what mgs?

    Thanks for replying. I had never heard of the medicine but it is suppose to work on the executive dysfunction. I hope so and I'm glad to hear from someone that is taking it.
  8. shootingstar

    shootingstar New Member

    I took it for a short time as a mood stabilizer for unipolar fast cycling depression. At a low dose I had no side effects, but at higher doses it made me very tense -- tight muscle effect. It probably affects different individuals in different ways.

    It was originally used for seizures, but is sometimes prescribed as a painkiller, mood stabilizer -- that's about all I know. No specific knowledge of how it might affect sensory overload, but it seems like something that might help some people.

    It would be great if these various prescriptions were not such a guessing game. My best wishes.

  9. SeaShel

    SeaShel New Member

    I have taken lamictal for sensory overload and it has been a godsend. unfortunately, I hit the dreaded Medicare part D "donut hole" and cannot swing the $400 a month. I'm really feeling it being off of it. I had just been bumped to 50mg a day. my family notices a big diff when I'm on it or not.

    I too have had lots of reactions to most meds, but the lamictal was fine. I also take 10-20 mg of oxycontin and 30mg of cymbalta for pain. I will prolly just be taking the oxy till next year when I can get a new drug plan with donut hole coverage. I wasn't expecting to be taking all of these meds and it was a rude awakening to have this happen.

    I hope you get the same benefit I have from the lamictal - good luck.

  10. 1sweetie

    1sweetie New Member

    I am glad that it worked for you...maybe it will work for me. At least there is some hope now. She had told me it would take several weeks to work but the first day I took it I thought (maybe my mind playing games) that I had just a bit more energy and the crying was not as bad. Now instead of dreading upping it in a few days, I will look forward to it.

    They have gotten me to the point I don't care anymore. I can not help this. I know it's normal life to everyone else but to me, I was getting physically sick. Yesterday my husband said I was crazy as "a bat out of hell".

    Lights make me nauseated. Noise is like someone with their fingernails on a chalk board. Motion in a car makes me sick along with the smells from some cars. It is hard for me to be around more than 1 to 2 people. If there is more than one sound at a time, I can't process the information and all of this just builds. I could write a book on everything that is affecting me now.

    How long did you take the medicine? My dose pack will have e to 100 mg in 25 days. If my body acts like it does to other meds I will probably not be able to increase it to where they think I should be but I am going to be more hopeful about it now.

    How bad were you?

    At the present, I am covered by my husband's insurance. Of course, he says he is leaving. I will be able to get Medicare in Sept. I did not know understand all of this stuff. Did anyone help you make the decision on what you should do? I am not capable now and I do not have anyone to help with that either.

  11. 1sweetie

    1sweetie New Member

    It was not prescribed to me for sensory overload either. When the new neurologist finally understood my reports from Duke...the words executive dysfunction...he suggested the drug and sent me a psychiatrist. What is a mood stabilizer and did it stablize your mood? How many mgs were you taking before you developed problems?

    Thank you so much for the replies.
  12. 1sweetie

    1sweetie New Member

    I live in sunglasses. Of course, they have to be the best and wrap around so that light does not come in the side. I recently had to get prescription glasses and they too are tinted to help me with the glare from the computer. I am going to be bankrupt soon with this DD.

    I ordered ear plugs and am anxious to see how much they help. Should I be buying a specific type?

    Thanks to each of you for your suggestions. Any ideas on a husband that wants to quite dealing with this mess???
  13. petesdragon

    petesdragon New Member

    I also have problems with cooking smells. My husband could eat hamburgers twice a day cooked on our George Forman grill which he refuses to wash. I put it in the dishwasher about once a week. Also the smell of coffee makes me ill. I bought battery operated clocks for every room so I was at least aware of what time it was. The noise of the two in the bedrooms drives me bonkers so I took them down. My son, when he is a guest in the guest bedroom hunts around until he can find the clock and hangs it. He thinks I am a hypochondriac about this I run a fan in my bedroom, even on cool days because it makes a white noise I am used to.
  14. SeaShel

    SeaShel New Member

    I was taking 50mg a day - one pill morning and night. Dr. had just increased me to 100, but I can't afford it now. The not having it is not any fun, I'll tell ya. anyway, I also started noticing positive change right away. My personal theory, based on nothing but my own experience, is that when we take some of these meds "off label", they sometimes work much quicker than if you're taking them for what they were initially intended for. one unexpected positive effect of the lamictal was that my overactive bladder quieted down substantially. the meds for that condition I can't tolerate, so I was thrilled. the bladder quieting down fits in with our central nervous systems being shot and the lamictal helping.

    try not to fret too much about the husband and the benefits. easier said than done, I know. hopefully you live in a community property state. when he sees you doing better on meds and realizes the financial and emotional reality of divorce, he may get a clue that you're not a hypocondriac.

    as for selecting the medicare part d, I did it myself. where I went wrong was that at the time I made the plan choice, I was not taking meds, so I didn't worry about the donut hole (also called coverage gap). I will rectify that this next plan year. there are policies that cover the donut hole/coverage gap. obviously, they cost more per month, but with the cost of lamictal alone, it's well worth it.

    I'm sure other posts/posters here can steer you to the websites that help you choose. it's a moot point till you're on medicare though, and your husband should have to carry you on his insurance unless/until a divorce. just being separated doesn't affect that, at least in my state (AZ).

    hang in there and best of luck. I hope you'll feel better and stronger each and every day.

  15. foggyfroggy

    foggyfroggy Guest

    Well I just wrote a long reply to your post but my computer did something weird and it disappeared and now my brain is toast so AAARRRRGG! I will try again!

    I had almost exactly what you are describing to the point of having seizure activity that even made my muscles jerk and it felt like there were snakes under the skin of my head and that I was so tense I would blow up! Horrible feelings! Luckily I have a good doctor.

    He put me on Lamictal - I take 300mg/day. I ramped up very slowly, 50mg/week. It really was a godsend for me - the label use is for seizure activity but like someone else pointed out it really helps with mood also. It has helped my sleep too, I take 100mg AM and 200mg PM to help with sleep.

    I also take Xanax; .5mg extended release in the AM and regular as needed when I begin to get overstimulated and sick during the day. I take .25 at a time for that and .25 at night to help me relax for sleep. I also take it before I have to go to the doctor or do anything above my usual activity level. My total use is about 1 to 1 1/2mg per day. It is NOT addictive although it can be habituating. What I take is a small dose.

    Your Klonopin serves the same purpose as the Xanax but my doctor prefers the Xanax because I can control my dose more closely (as needed) and it doen't make me groggy. It also helps with proper sleep patterns unlike the other Diazepams. If your doctor won't prescribe the Klonopin then get another doctor; you are not being listened to and treated with respect. It sounds like you are not getting knowledgible treatment.

    I also take 75mg Trazodone in the eve. for sleep - again, it helps calm down those poor toasted brain cells ;_)

    Make sure you are PACING yourself! It gets much worse when you are overdoing things - stay within your energy envelope and try to avoid stress. The book "the CFIDS/Fibromyalgia Toolkit" by Bruce Campbell is an excellent book.

    You might try to copy off some of those "to my family" letters that some of the websites provide for people to give to their loved ones to help them understand what we are going through. I think the CFIDS website has one and I know there is one in the back of several books - "Chronic Fatigue,Fibromyalga and other invisible illnesses" by Katrina Berne comes to mind.

    Oh, another thing - you should avoid things like food colorings, artificial sweeteners, additives, pre-packaged food, anything with MSG (that includes many things that say "natural flavors"). They really affect me badly! You may also have Multiple Chemical Sensetivity Syndrome to add to the mix. I went through NAET and it helped somewhat. There is info on this site if you haven't heard of it.

    I hope even a tiny bit of this helps - I know how horrible it is - I spent many a day in a totally dark closed room with my eyes coveres by a mask and earplugs in.

    Love, Gretchen
  16. shootingstar

    shootingstar New Member

    Sorry I missed your question -- just checked today.

    I have had problems with clinical depression. At the time I was prescribed lamictal (a few years ago) I was always depressed, but was cycling from severely depressed to much less so over the course of a day or so, or even within a day. I was prescribed Lamictal to try to stop, or stabilize, the mood swings. It initially seemed to help some, but as they increased the dose, and I do not remember how much that was, I developed a head tremor and tension, and was still depressed.

    In hindsight I think the cycling may have been related to cfs or fm, as opposed to actual rapid cycling depression, because now that symptoms of those are more apparent I have better and worse hours or days in relation to pain/fatigue whatever too.
  17. NyroFan

    NyroFan New Member


    Yes. it happens. I had to unload my ex because he could not understand what was happening to me. We expected our lives to go a life time, but I never expecting him to be non-understing of what I was going through.

    Even with the dx from the doctor and then accepting it, he could not really understand it or really it.

    So--we broke it off. Sad to say, because I really loved him. I really didn't want to saddle him my problems, but it came too much.

    I hope it does not happen to you.

    Bonus: you do not have to figure anyone to believe im or anyone else.

  18. 1sweetie

    1sweetie New Member

    Haylecole: Thanks for the bump. Because of the sensory overload problems and issues relating to that I have not been able to respond to those that have been so kind to give me great info.

    foggyfroggy, shootingstar and seashell: I was on day 12 of Lamictal and I broke into a rash on my hand(this morning) and was having trouble with my vision. I did not take the pill today. The only info she had given me on the med was if I broke into a rash was to take a Benadryl and call her or the hospital. I will call her Monday but the rash could be deadly so I doubt that I will be able to continue it. I was so hopeful after hearing some of your successes with the drug that I had found something to help me too.

    My husband, after spending the night away on business and after my son went with me to therapy, seemed to try to understand that I am very miserable and can not help the situation. The trip was good timing I guess. He went by a Boise store to get headphones that will help with noise reduction. That meant a lot to me. They will arrive next week and I hope they help. They should if not I can return them. Now we have to work on the rest of problems.

    It is worse with fatigue. It builds as the day progresses and what I am subjected to that day.

    I have Bruce Campbell's book(old and revised) and tried to take the course twice. I was not able to contribute weekly. When my cognitive abilities and sensory overload are better, I will try again. Everyone in my classes would be classified between a 10 and 20 which means everyone is rather sick. I have applied techniques learned though and they have helped. It took so much energy for the individual correspondence. If everyone on this board would take the class, there would be less post. It explains how much energy it takes to stay on the computer. I can not stay on the board regurarly. It's strange that I can some days and then there are days that I get sick when I turn it on.

    I do have MCS also. I looked at the website and have tried to find someone in this area.

    I will try to find the letters are speaking of in some of the books I have. I need someone to understand so badly. I am an only child and even as an adult with adult children, I was still their baby. They now ignore me because they don't know what to do and they know how desperate I am at the moment. The best I have heard is "I don't know what to say".

    For all those that have replied, my heart thanks you. I have to get off of here now.

  19. Scapper

    Scapper New Member

    So sorry to hear you're struggling at this level!!!

    I just read your bio -- I cannot believe all that you have been through -- what an ordeal!!!! I'm sure your body needs time to heal.

    I too have been dealing with the sensory overload at a higher level this past year. I'm using klonopin but I think my body has gotten to used to it.

    I'm also using St. John's Wort during the day and at night. I think it may be helping a little.

    Do you still use the klonopin during the day?

    I wish I could give you some good advice on how to deal with your family but it's out of my experience. All I can say is please try to focus your energy on positive healing in any way that may help you to another level. Do whatever you have to do to take care of yourself!

    I know it's difficult. My mental state is suffering from being sick and in the house so much. We just do the best we can -- please hang in there!!!!!

    Let us know how the Lamictal works out for you. I may be considering it myself since I too could write a book on the sensitivities from hell.

    HANG IN THERE.......scapper
  20. alonebutnotlonely

    alonebutnotlonely New Member


    I was also having sensory overload but I was sure it was seizures because I was going down to the floor when it happened. My doctors (neurologist and general practitioner) took notes on it and I went thru a battery of tests. Everything checked out fine. It took taking my mother into the Neuro's office with me and describing what happened when I went down to get him to actively pursue the problem.

    After all of the brain tests the Doc did showed everything was fine he had me hooked up to a Holter monitor for 4 days. The monitor showed I was having seizures constantly, day and night.

    That being said, I was prescribed Lamictal (about 1 1/2 years ago) for seizures. It has been a God send. I don't have as many overload sensations as I did before and the seizures have been helped also. The seizures haven't disappeared completely but they are so much better.

    I take 300mg twice a day and feel like I could take more but I try to take as little as possible to be effective ( and with every thing else I'm prescribed). I am currently taking 10 to 12 prescriptions, some are "take as needed".

    I would definitely try Lamictal for sensory overload and if it doesn't agree with you you could titer down or stop taking them according to what your doctor says. Lamictal has helped me so much that I would recommend it to anyone with overload.

    I will tell you this though, I haven't had an adverse reaction to any drug that I am currently taking. Also, there is a warning on the package that if you get a rash hightail it to the doctor, even if it is years down the road.