Hypersensitivity Question

Discussion in 'Fibromyalgia Main Forum' started by TerriM, Feb 4, 2003.

  1. TerriM

    TerriM New Member

    I would like to hear how sensitive everyone is to meds. My endocrinologist says he's seen others with hypersensitivity, but that mine is off the scale (maybe the reason I'm having the cell phone issue also). He things my Ehlers Danlos Syndrome may make me even more sensitive. With Amitriptyline (Elavil) I had to take 1 mg. (1/10th of a pill . . . at first I could sleep, but then I became very hyper). Most medications also make me become very hyper/wired. I see that most drs. that specialize in Chronic Fatigue use a lot of herbal supplements, etc. & I fear of what would happen if I took any of those. I was told one to try Kava Kava & the normal dose was 40 drops (liquid form), I took 4 drops & was out for 15 hours! They also tried me on Ativan just to see how I would react (for four days) . . . I was so wired I couldn't sleep, sit down . . . it was crazy! I was just wondering if I react worse than others, the same, etc. Thanks!
  2. sb439

    sb439 New Member

    ... and I know there are a number of CFIDS people, but the majority is not.

    I overreacted badly (3 months ill, one badly) to some homoepathic 'organ support' mixture from my dentist (I'd taken less than half the recommended dose for five days).

    I react badly to at least a dozen herbs, a number of meds, can do with less than half than normal with most meds I take, overreact strongly to Q-enzyme 10, which is meant to have no side-effects of any kind (!), also to sudafed (1/8 of a tablet makes me hyper, 1/2 keeps me sleepless for a night regardless of my sleeping meds, and the list goes on.

    I've learnt to be very careful, never try more than one med at a time, and always start with 1/4 or 1/8 of the recommended dose.

    On the positive side, if one needs less of the meds, presumably there's less overall harm done? (I try to tell myself that, at least.)

    What I'd like to know: is there something we 'oversensitive' people have in common, CFIDS cause- or symptom wise? E.g. I know mercury is an issue in my case, and pesticides, and stress/adrenal issues, and very low growth-hormone. I've never had my liver function tested, but that's another obvious one for med-sensitivity.
    so - does this picture look familiar to you, Terrim? or anyone who's hypersensitive to meds? What are your hypotheses about the specific causes of your CFIDS?
  3. TerriM

    TerriM New Member

    I was wondering the same thing. Especially since some people with CFIDS have some symptoms and not others & some of the symptoms I have others don't & vice versa.

    I was definitely type A with a big career job and a long commute. Took care of my elderly mother also & had a small antiques business on the side . . . overall I was doing WAY too much I believe now. My mother passed away and then 3 mos. later I had surgery & never recovered. I've been ill now for 16 months. At first I was recovering o.k. & two weeks into recovery we had scheduled a vacation (before I knew I had to have surgery). My Dr. cleared me to go, but when I got there I thought I had the flu & took some over the counter meds (sudafed one day, robitussin, then benedryl and Ibuprofen . . . all on different days. Each one I took I became so hyper . . . really weird. I was having shortness of breath, nausea, severe dizziness, fatigue . . . anyway, I went through a ton of drs. who told me I probably had a virus that would go away, I might have MS, I needed to journal, I needed anxiety medication . . .you name it and they said it. I knew I was feeling like I had some bad blood sugar problem so I went to an endocrinologist. He found that I have insulin resistance (probably causing my yeast infections & at least some of my fatigue) and they also found I have VERY high cortisol levels (so the adrenals is a match) . . .however, I've read that most CFS people have low adrenal output???? Then I realized the bad sensitivity to meds, and the severe cognitive/memory issues (one day I couldn't remember how to get home) . . . I hate driving now. I used to be so independent, but with the fatigue & "fog" I don't like it. I flush in the face really bad & I have very slow recovery reflexes. My dr. said he believes my underlying cause may be a neurotransmitter problem possibly made worse by the anesthesia that is throwing my HPA Axis off. I have severe reactions to MSG & Nutrasweet so he thinks it could be the glutamate or GABA in the brain.

    Have you ever take Ativan? They gave that to me & I had the opposite reaction -- it didn't sedate me, but I became REALLY hyper. Since then I've been trying some other specialists to see what else I can find out/rule out. The Dr. that was helping me doesn't take insurance & I lost my job & have a lawyer trying to help me with my cos. disability, so I can't go to him anymore. Trying to find a new "base of operations" . . . I would love to figure out what us hypersensitive people have in common. What else except meds are you sensitive to? I can't dye my hair or use any household chemicals now. My husband lit out woodstove that had a new pipe & the chemicals made me really sick. He also was melting down an old candle at our house & the scent made me sick. My aunt had a fuel oil leak in her home that she didn't know about. A month before she had any signs I had smelled it . . . my nose is very sensitive. Any chemicals are very bad and also artificial flavorings -- I used to love hazelnut coffee, but had a reaction to that after my surgery. I've never had any allergies before this either. Have you ever been diagnosed with a connective tissue disorder? They told me that makes me sensitive also.

    I'm very interested to pursue things we may have in common. Also I posted a note about sensitivity to cell phones . . . do you have a problem with those?? I didn't before, but it started a couple of months ago. Thanks! Take care, Terri
  4. joannie1

    joannie1 New Member

    I have a lot of sensativity to meds. I have a sheet that i take to the Doctor with me on them. I have opposite side effects often too. Ones that are supposed to make you tired make me wired. And so on. I go back and forth t with this too. Sometimes the actual normal side effects are so severe I can't function and ather times they are the opposite.

    One thing I have began to do and it helps especially expense wise. If they have prescribed 30 I ask my pharmacist for 10 to start. That way I am not paying so much or wasting them due to side effects or sensativity to them.

    Take care.
  5. Mikie

    Mikie Moderator

    Many of us are hypersensitive to many things, not just meds. Because we are in a constant state of seizure, many drugs and herbs exacerbate that condition.

    BTW, I read a warning on the safety of Kava Kava not too long ago. Of course, with my poor memory, I can't remember why there was a warning issued, but it said taking it could be dangerous.

    Some people cannot take Klonopin, but for me, it has been a God send. I no longer react so horribly to loud noises, harsh lighting, smells, and even touch. It has allowed me to get quality sleep, stopped the anxiety/panic attacks, greatly reduced the sensory overload, and helped with tinnitus.

    I believe that a lot of our problems with sensitivites are a result of the seizure state.

    Love, Mikie
  6. TerriM

    TerriM New Member

    I will check out that article. I found the tip of the day today interesting too since a lot of people try to persuade me that if I exercise this will all go away . . . right.

    About Kava Kava . . . that was quite some time ago when I first got sick and I wasn't aware of these things. My doctor later told me that it has been proven that Kava Kava damages the liver. That is what you may have read before or maybe there are other side effects I'm not aware of. I don't touch anything like that anymore. I think a big misunderstanding in the general public is that "natural" means "safe" which is not the case.

    Thanks! Terri
  7. Mikie

    Mikie Moderator

    You are right. In my estimation, meds and some supplements can be the same thing except that one has to go through trials and licensing to ensure safety and consistency in active ingredients. The other does not. Does that mean drugs are safer? No. We all see where one drug or another is taken off the market. We have to be careful what we put into our bodies whether it an Rx or a supplement.

    Love, Mikie
  8. TerriM

    TerriM New Member

    Agreed Mikie -- At this time I am taking absolutely nothing . . . of course that isn't solving the problem either, but I have actually become somewhat afraid of taking meds at all . . . I know that isn't appropriate either. Its just with all of the bad side effects (especially with antibiotics . . . I almost died last summer from an overdose of Macrobid for a UTI which I had taken before the illness with no problem) . . . now they say pediatric doses only . . . it is just really scary with the high sensitivity. Sometimes I think what if I need another surgery or am in an accident or something . . . good grief, most doctors I've seen don't even believe someone can be this sensitive. I had a doctor tell me recently that CFS isn't life threatening so I should relax . . . easy for her to say, but there are aspects that are VERY dangerous.

    I am wondering about Klonopin being a benzodiazepine . . . I tried Ativan and reacted badly (very hyper to it). I wonder if that means I can't take those at all.

    I read the Dr. Cheney article . . . the excitotoxicity is what my endocrinologist was talking about in the brain neurotransmitters, except he said glutamade and GABA??

    I was told to find a Neuropsychopharmacologist (supposedly an expert in neurotransmitter imbalances) . . . they are impossible (or almost) to find . . . I've had not luck so far and don't even know if they can actually help.

    Thanks! Terri
  9. sb439

    sb439 New Member

    I think it's worth while to distinguish between sensory overload and hypersensitivity to drugs.

    A large percentage of us has sensory overload. It seems to go together with brain dysfunction of the kind that the frontal lobes are much reduced (if not completely) in what they normally do, and the left temporal lobe and part of the visual cortex take over some of their function, as a result are overworked, and the sensory overload results.

    Hypersensitivity to drugs seems to occur in a much smaller percentage of CFIDS people. The causes for this, I assume, are different from those for sensory overload, and again there can be different causes for hypersensitivity. I can think of three:
    (i) brain dysfunction, but of a different kind than that for sensory overload
    (ii) liver disfunction, i.e. loss of detox ability
    (iii) candida and other things in the intestines (perhaps also systemic) which release toxins into our systems when we take antifungal detox herbs or drugs
    and (iv) of course any other abnormality in our bodies can lead to abnormal reactions to certain drugs

    Well, this is just what I've put together from reading, and some of it may be oversimplified or partly inaccurate.

  10. TerriM

    TerriM New Member

    Yes, I understand they are two different things . . . I have been told the med sensitivity with me may be worsened because I have a connective tissue disorder (EDS) which makes me more sensitive to drugs in the first place. Maybe some other things exist like that and cause the med sensitivity.

    The sensory overload I can relate to as well to some degree. I seem to have the most sensitive nose my friends and family have ever seen. I can smell things way before anyone else knows they are there. My aunt had a fuel oil leak and I smelled it a month before anyone knew there was a problem.

    Is the brain fog actually a type of sensory overload? I sometimes feel at those times like there is just too much input that I can't focus on it . . . maybe this is a bad description, but I think you'll know what I mean. When I first got sick this was really bad . . . just going outside everything seemed too loud, too fast, too bright and when I went around people after isolation at first it seemed it made me anxious when they were close to me or something. That went away for me over a year ago, but I don't know why.

    Take care . . . Terri
  11. Madelyn

    Madelyn New Member

    I took Elavil and had a "paradoxical" reaction. I was on the ceiling. A few years ago I was prescribed Prozac. I took it once and didn't know it was possible to be so nervous. Now my Dr. prescribed Cinequan instead of Elavil and I'm petrified to take it. Maybe it would change my life! But I can't bring myself to try!
  12. TerriM

    TerriM New Member

    Madelyn - As I mentioned, I was at first able to take Elavil and it worked, but then I somehow developed the paradoxical reaction to it also. Then they wanted to see how I did with Ativan as a test . . . I was very scared, but just took a really small dose. I thought I could always up it a little. The same thing happened to me with Ativan. Now that Mikie suggested reading the Klonopin article by Dr. Cheney, that describes exactly what my Dr. hypothesized is going on with me with GABA/Glutamate receptors . . . his article sounds like Klonopin is the best thing, but I am now wondering if I try that and it is a benzodiazepine like Ativan does that mean I will react paradoxically to that as well?? I am a little afraid to try also, but I think the best thing is to try a very small amount & try to get past the fear. I have it too so I know what it is like. They wanted to give me a dexamethasone suppression test to make sure I didn't have other issues like adrenal or pituitary tumors and you have to take the steroid the night before they draw your blood . . .I was absolutely petrified to take anything at that point, but it went o.k. and I tried to meditate a little before taking it . . . sometimes I think if I get stressed the balance gets more out of whack in my body and I react worse . . . maybe that isn't the case, but it seems to be. One of the worst reactions I ever had was to dextroamphetamine. They gave me a child's dose & I took only a small portion of that, but it made me sick for 3 days plus severe head pain the whole time . . . the thinking was that some of my symptoms indicate low dopamine & that was supposed to fix it. I also have insulin resistance and they gave me glucophage for that . . . at first my fatigue was better & the dry skin on my face cleared up, but then my blood sugar dropped really low & they told me to stop taking it. I almost think it was the dosage . . . that I needed such a reduced dosage compared to the normal dose. I have now been going for a long time without treating the insulin problem & I have to majorly stay away from sugar because it makes me really dizzy & ill. I was afraid after the Elavil to try the Ativan, but it wasn't all that bad . . . just so wired for a few days. My husband said maybe you need to take more . . . good grief! Anyway, maybe if you try just a tiny amount & as someone else suggested don't buy the whole 30 pill bottle so as not to waste money. I know my husband thinks it crazy when I take 1/4 of a 1/2 milligram pill, but who cares at this point. For some reason he doesn't believe if I take a pill & he takes the same pill I could react differently than him . . . actually I've always thought that it is weird that vets change doses for the dogs different weights, but for my 250 lb. hubby gets the same size percocet as they give me at 130 lbs.???? That never made sense to me anyway.

    Best of luck to you . . . I guess sometimes if we don't cautiously try we could miss reaping the benefits . . . althought for me it is still a difficult step . . . I kind of freeze with the pill in my hand for awhile :) Terri
  13. lisjhn

    lisjhn New Member

    I also have opposite reactions to a lot of stuff...valerian and benadryl make me wired, 10 mg. of prozac make me bounce off the walls only 2 hours after taking one dose, I have to take like 1/5 to 1/10 of the usual starting dose of most meds except pain killers, which I need more than the average amount. Weird, huh.

  14. TerriM

    TerriM New Member

    Lisa -- I have the opposite reaction to Benedryl also . . . that is something that I've actually had all of my life. I wonder sometimes what the opposite reactions mean and why they occur & with only certain drugs . . . hmmm.

    Did you ever take Ativan? That was the weirdest opposite reaction I've ever had . . . I think I took 1/5 of a 1/2 milligram pill & I couldn't sleep or hardly sit down for 4 days and it made me euphoric and I couldn't stop talking.

    I took one dose of Paxil one time & that made me wired & kind of manic or euphoric also plus a bad headache. Have never tried Prozac at all.

    Glad but also sorry that I'm not alone with these sensitivities and weird reactions. Also, I wonder why it is that people are so disbelieving of this symptom??

  15. Mikie

    Mikie Moderator

    Sensory overload and hypersensitivity to drugs are two different things; however, I have noticed that since taking the Klonopin, I am less sensitive to the effects of some meds. I believe that perhaps hypersensitivity to drugs may just be exagerated sensory overload in some pople. Obviously, there are probably other reasons people react paradoxically or otherwise poorly to meds.

    I thought I was going to die from taking Macrodantin years ago for a UTI. The Cipro had a very similar effect on me.

    Love, Mikie
  16. TerriM

    TerriM New Member

    Mikie - Macrobid & Macrodantan, as you probably know, are different forms of the same drug. I had such a bad reaction from that drug I didn't know where I was and was having problems breathing. I was told by my urologist that the reason they don't give that drug to the elderly is that they have the same reactions and many times die from an overdose. It is sometime scary how much of a trial and error thing taking drugs/supplements/etc. can be. I am not taking ANYTHING right now - not even vitamins, but I've been hoping to find a good multivitamin that has no artificial colors or preservatives. Although I've been reading several things that say magnesium is especially important and that chromium is good for insulin resistance. Also that the B vitamins help immunity.

    I am also wondering since I had a paradoxical reaction to Ativan (a benzodiazepine) if I would definitely have a problem with Klonopin or since it is a different drug I may be o.k.

    Thanks everyone for all of the great input! Terri
  17. lisjhn

    lisjhn New Member

    Yes, my illness started around the time I got 14 fillings in a one month period, most of them amalgams too. So, I can't help but wonder if it's the mercury causing this. I keep hopping from mercury to candida, to herpes6 to EBV, to mycoplasmas. This is the most mysterious illness ever. It'll be just like before AIDS was discovered, when they had no clue what was happening. Only we don't die, we just suffer life long with people balking us, disbelieving us and calling us drug seekers.

    And yes, I have tried Ativan, doesn't make me wired, but doesn't make me tired much either. I think I have a normal reaction to it, just relaxes me a little.

  18. TerriM

    TerriM New Member

    I have seen quite a few articles talking about the mercury amalgam fillings. I have them like many other people. How do you actually find out if that is a big problem for you personally? It would seem to make sense that if certain people are very sensitive to meds, or environment things like chemicals, etc. you would be more sensitive to something like that in your mouth as well . . . I was just curious because someone had mentioned that was a big problem for them. Thanks! Terri
  19. bluebirder

    bluebirder New Member

    Side effects like:
    hemmoraging, irregualr periods
    increased asthma attacks
    increase in acid reflux
    irritable bowel and rashes
    stress incontience with quick movements or cough/sneezing

    Try that stuff and try and work in a room full of high risk preschoolers while you have a walking/splint cast on one leg !!! Try and get up and down without something to pull up on!

  20. sb439

    sb439 New Member

    Your story (second post this line) is so sad and so typical at the same time. But I see you're ready to do whatever to get better, which I think is important.

    A couple of things: no, I don't have connective tissue disorder, but there are a few people here who have lupus together with FM or CFIDS.

    Minerals and Vitamins: I improved noticeably (far from being well, but still), after being really very ill, just by taking certain vitamins and minerals, so finding some suitable multivitamin plus minerals that you can take may be important, also some vitamin B complex, and then vit. E and C and Magnesium, as you mention yourself. That plus some phenylalanin (500mg daily, then down to 250 mg daily, on empty stomach) made the worst of my brain-fog and general feeling ill disappear.

    Some of my chemical allergies (chlorine, turpentine, all sorts of ordinary cleaning stuff, paints) has got less worse since I've got better. But the bottom line as to what to do is to remove everything that could make you allergic out of the house and replace it by some alternative. (some mothkiller I stupidly used gave me a 7 day non-stop killing head-ache, until I finally realized what the cause was)

    Doctor: you ask about Cheney in a different post, I think he's terribly expensive, but depending on where you live, I'd definitely go see someone who specializes in CFIDS. There are various lists of 'good doctors' on various CFIDS sites, and many of those I believe have a good track record, you could always ask about them on this board before making an appointment.

    Finding a common denominator of those who are hypersensitive may not be possible on a board like this. One would really need some scientific (or sort-of scientific) study with extensive questionaires, etc., alas.

    all the best,