CFS - Episodes, Crashes and Herxes Defined

Discussion in 'Fibromyalgia Main Forum' started by leomonkey, Feb 5, 2006.

  1. leomonkey

    leomonkey Member

    One of the benefits of this site is the exposure to a greater number of people. This really gives perspective of this condition.

    I became curious after a previous posting about how other people experience a "crash". It did have me consider that I may need to be more specific with medical personal and not take for granted that we are thinking of the same experience.

    I sometimes find that in a day and throughout the week I may need to lie down or stay couch/bed bound for significant hours at a time due to exhaustion, nausea or being too "spaced out" to really do anything. I do not consider these experiences a "crash".

    A crash for me is when I develop a migraine, have nausea bad enough that nothing (only water) will make me worse, and am weak to the point that I cannot walk. Sleep is difficult. I feel like I am in a prison isolation cell but no bread, just water ;) I usually stay in my darkened bathroom. The "episode" lasts 24-36 hours. It seems to increase, hit a climax, then decrease. Usually at the 12 to 20 mark I hit the peak. Once I have hit the climax and it starts to wean, I use a clock to count the hours I know it will take to get out of the crash. What I am getting back to is my regular life which is persistant nausea (much less than the crash however) and fatigue (of course).

    Know that I have had months of experiementing with trying to prevent a "crash". I have had some success in reducing their frequency (from 3x/week to 1/weekly) but they are inevitable for me. It seems that all my interventions have improved my daily living but not the restoration part that I believe prevents crashes.

    Even though I know there is a range if experiences with CFS, when it came to "crashes" I assumed that my experience was everyone's experience. It would be helpful to know the range of experiences so I could gain perspective on this.


  2. leomonkey

    leomonkey Member

    There are so many similarities but on this site and in conversations with people I know locally, it seems what we all call a "crash" is more different than we think. I found this also with doctors. Probably human nature to generalize.

    Thus, the way we deal with our “crashes” also differs. One of the differences is that it seems people can drink teas and the such. This exacerbates my symptoms. That is why I am still curious. It could be that I am seeking a “twin” who will give insight into strategies that will work effectively with me
  3. Shannonsparkles

    Shannonsparkles New Member

    I've been enjoying your posts since you have been with us. :) Thanks for presenting good information and sharing personal experiences.

    Would you please take a few moments to fill out your bio? I'm sure we would all like to know more about you.
    ((thanks)) your fan, Shannon :D

  4. Shannonsparkles

    Shannonsparkles New Member

  5. bpmwriter

    bpmwriter New Member


    the cycle that you're stuck in right now reminds me very much of how i felt in the first 6 months of my illness. every couple weeks, i would have an episode, or crash, that would build in intensity over 2-3 days, ending with an epic nauseating migraine that would stop (finally) but left me wiped out for days.

    i've recently become stuck in a similar spiral though it's not as frightening since i know what's happening and i don't work either so i can rest.

    personally, the only way i was able to break the cycle was to start on a low dose ssri (lexapro). in the beginning i fought it because i wasn't depressed, i was SICK!, which is the line a lot of us stick to. but my migraines were serotonin-related and once the ssri had time to work, my sleep improved, the migraines went away and i slowly started to emerge from the haze.

    have you ever been on an anti-depressant? considered one?

    eddie
  6. jane32

    jane32 New Member

    Episodes are when I am just fatigue and need to lie down say 1/2 through the day or something like that. This is a normal part of my day where I pace. My fever and viral symptoms cycle for me in the begining of the month so that is not a crash for me-it is just part of my CFS and I know to expect to feel bad for 10 days. A crash for me is when I get the fevers, chills and fatigue when I am not expected-say the middle of the month and it lasts for a couple of days. A herx has been a lot of cold symptoms for me when I add new antiviral items. The Herxing can overlap with me fever cycles and my crashes. The last time I crashed was over the holidays otherwise I can pretty much avoid them.

    I think everyone is different. I chart my fevers and symptoms three times a day for the past year so that has helped me see the difference.
  7. leomonkey

    leomonkey Member

    Some good suggestions... could very well be I ma missing something...

    I do know I seem to get regular “crashes” where I am immobilised with fatigue (sometimes dizziness). This is like when your computer stalls on you or shuts itself off, of goes into hibernation and isn’t useable for a while. However, the episodes or “crashes” I get seem to shutdown every system in the body. I can’t drink, eat, sleep and I don’t even eliminate. It is like when your computer suddenly makes a weird noise, shuts down and it will not restart.

    Bmpwriter… serotonin sounds like something to investigate. In the past, I did not do well with SSRIs. More damage than good. I can investigate how to boost serotonin other ways I am sure

    Stormyskye… The migraine is a big communicator that something is definitely not acceptable. I have been looking over my tracking notes for years and can’t seem to identify anything. I thought it was menstrual and ovulation related (as these tax the system). Did go to organic personal products. I tried a migraine elimination diet too and THEY still came. Do you think the nausea may be the bigger issue? Shoot, getting this crashes figured out would sure be nice.

    ALSO Stormyskye…
    I wanted to ask you if you know anything about adrenal supplements! I have been using sea salt and high doses of Vit C when needed. Feel like a need a bit more when my body is telling me they are having problems. Any suggestions?

    Sparkles… thanks woman! I will work on the bio. Appreciate your posts too!
  8. leomonkey

    leomonkey Member

    Thanks Stormyskye…

    I have a basic timeline but I will try and sum it up here. Approx. seven years ago...my condition started with severe IBS symptoms then I was hit with bronchitis.

    Addressed the daily living symptoms first because I thought I wasn't getting nutrients in, etc. During this time I was getting an "episode" once a week. Over the years, these went up to 3 times a week, until I stopped working all together. I eventually have been able to get them down to weekly episodes for the last three years.

    Many strategies have been tried... most have had a positive impact on my daily functioning and reducing the down time (some people call these crashes too I think). However, the “episodes” are still pretty bad. I have found the migraine-type headaches are less severe. In the beginning, I needed to put hard pressure to try and numb the pain. Now they just are bad headaches and less migraine-like. The nausea continues to be bad. More like I feel the desire to gut myself… take out my insides because I feel internally toxic.

    An “episode” lasts 24 – 36 hours. It starts with weakness/nausea/headache that increase, peak, then slowly subside. I find anything, other than water exacerbates my condition. I manage to basically wet my lips with water… a glass over that time. Because my system shuts down, I don’t even feel hunger. Even if I did, I cannot even get in fruit or a shake. It is like time stands still really. I neither lose weight (or gain it) even though no calories have come in. My breathing becomes laboured especially around the peak.

    Yes, the doctors know. It scared me to death when I first started to get them. I thought that their reaction seemed sympathetic but I have always been concerned about damage from the “episodes” I get... perhaps they don’t believe me or feel I exaggerate? As the years continued, I have just assumed this was the normal crash of CFS.

    If you can think of anything, I am all ears (or eyes)!



  9. leomonkey

    leomonkey Member

    Sounds like the same but I have done much better with my daily living "crashes" but not my episodic "crashes".

    Were you able to identify what caused your crashes and/or how you could avoid them?

  10. leomonkey

    leomonkey Member

    Lots of great suggestions, Stormyskye. Thanks for taking the time to do this.

    I am using a Brain Garden toothpaste and Health food store personal products. DO you know of any ingredients that might be suspect even in these products? Did check the make up thing, switched to minerals stuff after I took a break and seems to have cleared.

    I am using organic cleaners in the house. On has plant base ethanol. Any red flags with this?

    I have cleared my current home. Plus, I have lived in five different locations (two different countries) with no change.

    So use spring water but not to cook with. Guess I assumed the heat would kill “unwanteds”. Will try this.

    Use xylitol for sweetener… occasionally stevia and they both seem good for me. I try to by organic… about 80% of the time. Cost gets me sometimes. I usually soak veggies/fruits in lemon water… thought this would get rid of the pesticides. You may know of a better trick.

    I like the probiotic but I find the digestive track starts to buckle if I am throwing to many things at it… in particular greens can irritate despite how healthy. I find I alternate with my a denatured whey shake/kyogreens/probiotic. When I am not in the Kyrogreens stage, I try and up my veggies intake with those on my safe list. May switch to ThreeLac as people like it. I am sticking with Kyogreens though… it works the best with no negative reaction.

    I like “the shake”. I can do the apple. The nuts consistently over time would get to me. Tried a diet a few years back that had a snack of nuts every day and it was not good as time went on. It may be worth trying without the nuts, you think? Plus my current shake seems to work pretty good to so sometimes I don’t like to mess with that which seems to help.

    So many good things have made a dramatic impact on my daily operational living. I use to have a migraine 24/7 now just occasionally and during my “episodes”. That is why these episodes are so strange. I even went into “forced strict bed rest” for two weeks to see if this prevent them The best I got to was once or twice a month.

    Water intake is an ongoing battle for me. I get good then fall off the wagon.

    I do have two other things I have been considering.

    I have a cat. I know this may mean the cytomegalovirus. I have not tried anti-virals at this point.

    Secondly, I am wondering if my heart is functioning as it should. I have pretty typical heart symptoms for CFS so I have not focused on this. But, why else would my body suddenly shut down like it does?
  11. leomonkey

    leomonkey Member

    I take only the papaya enzyme. I find this seems to do the trick.
  12. leomonkey

    leomonkey Member

    Thanks. That is why I appreciate your time with this. I figured someone else may catch something I am missing. Like editing for spelling mistakes on a grander scale (hee hee)

    I did read the article. That’s what made me think of the heart thing. Sometimes I wonder if it is the chicken or the egg. Did the heart start some of the other problems or the other way around.

    MY GP was hands off for the most part, we just trials antidepressants and other similar medications. My current doctor is mitochondria focused so we have focused on that for supplements. I have been with him for a couple of years. He was concerned about me becoming toxic on the anti-virus stuff. I have been pushing for us to go ahead with this and we will next week.

    I do know that I will probably need to drop my mitochondria support. Too much puts me into overload. I find I could alternate back to stuff.

    I have had the occult tests done with them being negative. One was positive for stood, with the IBS that was not atypical but I have taken care of that situation now. I did follow a cleanse from Cure all Diseases. Followed all of them, kidney, liver and parasite. Have not been strong enough to do cleanses for a few years so I stick to the kyogreens. Love that green crap because it is nice to me. I also use a mud math product once or twice a month. Epson salts weekly. Massage to keep the lymphatic system going to help detox too.

    Why we haven’t tested for the viruses is due to the fact that it only indicates exposure, which many adults will have. It will not test if the virus is active. I can press this point for the sake of interest. It may give at least some direction and it can't hurt. Some people have certainly indicated the anti-virals were helpful. I will take note of your favorites.

    I do not seizures… thank heavens. I am out of it. Very difficult to speak due to pain mostly but brain functioning also becomes basic. I feel like I am at the most basic survival level. Light is bad too so I tend to set up in the bathroom or my walk in closet. I think the smaller space is also more psychologically protecting too. I engage in a lot of positive self talk to keep myself calm.

    The hospital is a good suggestion that we tried for the very reasons you mentioned. This was in the early days. We set it up that family would have to carry me there basically. After eight hours in the emergency room, I started to come out of it. They refused to do the blood test as they felt that it was a more complicated issue. Since I was not at the risk of dying on their floor, I guess. But how did they know? I had requested that I do a hospital stay a couple years back but my doctor at the time was not for it. I can always ask again now for the crash to get data on what is going on. Yet, my blood tests are normal now so who knows?

    I was never good with water but I do recognize the importance. One reason why I asked for the hospital visit so I could be hydrated through IV during a crash. I will continue to make it a priority.

    Well, sounds like our conversation has led us to the anti-virals. I actually suggested these four years ago (sigh). Well, now is all we have.

    Thanks again, SS
  13. marw

    marw New Member

    ....Migraine headache. (the crash, I mean.) If you have not Imitrex Injections, and you do not have any heart conditions (check with your doc) this is a terrific medicine. Instead of a crash (I used to crash for 24 hours more or less before I ever got Fibro, just from the Migraine). After this drug came out, I had a normal life up until the Fibro set in. That would about 25 years of normal ...well 25 years of Migraine, which was awful until the Imitrex was allowed in the US by FDA. ANyway, I kills a Migraine in 10 minutes flat. Do not use the pills unless they actually do work for you, but they never did for me. I need something straight to the blood.

    I'd be interested to know if this works for you.

    HOpe you find something.

    Margaret

    P.S. Migraine can be preceded by an aura of flashing lights, strange noise, even hallucinations, and strange smells. It really can mess up sensory perception. THen it goes into pain and/or nausea. You might want a neurologist to check this out, if you haven't seen one.
    [This Message was Edited on 02/09/2006]
  14. marw

    marw New Member

    I thought I had better add something here. There are different kinds of Migraines. Yours sounds like what is called commom migraine rather than classic, or perhaps a combination.

    Now it is true that Migraines have triggers. However, in many people, regardless of the trigger, they were hereditary. This means that you need the Migraine diet. Or you might need it anyway. Basically you have to watch food intake with tyramine in it, and do not get too much. I will try to find a copy of this diet for you. It really, really cuts down on severity and frequency of Migraine. It is similar to the MAOI diet.
  15. jane32

    jane32 New Member

    I think you have migraines as well. Have you seen a neurologist?

    As for me I can't prevent my crashes yet I wish I could but for now they are like clockwork just part of my CFS. Hopefully, one day they will only come every couple of months at least that is what my dr. at the FFC is trying to do b/c fevers are just awful!
  16. leomonkey

    leomonkey Member

    I did try a migrain elimination diet but your may be different.
  17. leomonkey

    leomonkey Member

    I appreciate all the "detective work" by everyone. I am a tough cookie but I just find seven years of these makes a person go a bit crazy (sigh).

    Did see a neurologist (2 years ago) and he just told me I had migraines. I grilled him for more information. He was confident no further testing was needed.

    Part of the reason why I have not focused as much on the migraines anymore is because the head pain has lessened where the nausea has remained. Also the frequency is pretty consistent. The best I have done is just twice a month. Who knows? Again, I am really trying to figure out why I am getting them still so frequently.

    Thanks for doing the research SS. I was not familiar about it but my diet had mentioned those foods.

    They are not prevalent in my diet so that has that covered.

    Here is the M Diet from about.com
    Migraine Elimination Diet
    From Cathy Wong, N.D.,Your Guide to Alternative Medicine.

    Why do people follow this diet?
    Some people with migraine may be sensitive to certain chemicals that occur naturally in foods. The chemicals that most commonly trigger migraines are tyramine and other amines, including phenylethylamine and histamine. Amines can trigger migraines because they are vasoactive substances that act directly on small blood vessels to expand their capacity.

    Foods that contain tannins, compounds that occur naturally in plants, can also trigger migraines. Researchers are not certain what the exact relationship is, but many agree that the neurotransmitter serotonin is involved.

    Do I stay on this diet permanently?
    No. The migraine elimination diet is a testing diet. It is unrealistic to permanently eliminate these foods from the diet. After learning what the offending food groups are, additional testing can be done with different quantities to learn how much of each food will cause symptoms. This way, a person will know what their limits are and still be able to enjoy eating these foods.

    What are the guidelines of this diet?
    Foods that are known to trigger migraines are systematically eliminated to identify offending food groups. Each food group is avoided for six weeks, or long enough to see if it causes an improvement in migraine symptoms.

    Step 1: Eliminate Tyramine foods
    Tyramine is a chemical called a monoamine that is found in higher concentrations in foods that have been fermented, such as aged cheddar, red wines, and blue cheese. American and cottage cheese can be substituted. Foods containing tyramine include:

    • Aged Cheeses
    • Yogurt, buttermilk, sour cream, dried milk
    • Tofu, soy sauce, miso, tempeh
    • Smoked, cured, or pickled fish or meat
    • Beer, wine
    • Lima beans, Italian beans, lentils, navy beans, pinto beans, fava beans, broad beans
    • Snow peas
    • Peanuts
    • Eggplant
    • Sauerkraut
    • Oranges, citrus fruit
    • Cola drinks
    • Banana
    • Grapes, Raisins
    • Plums, Prunes, or Figs
    • Pineapple
    • Avocado
    • Chocolate

    In addition to tyramine, foods containing the chemical phenylethylamine should also be eliminated. These foods include:
    • Cheesecake
    • Yellow cheeses
    • Chocolate
    • Citrus fruit
    • Alcohol/Red Wine
    • Chocolate
    • Cocoa
    • Berry pie filling or canned berries
    • Red wine

    Foods that contain histamine or cause the release of histamine should be eliminated. These include:

    • Banana
    • Beef, pork (can eat lamb or chicken instead, these are safe foods for most people)
    • Beer
    • Cheese, especially yellow ripened
    • Chicken liver
    • Egg Plant
    • Fish, shellfish
    • Processed meat, such as salami
    • Sauerkraut
    • Soy, tempeh, tofu, miso, tamari
    • Spinach
    • Strawberry
    • Tomato, tomato sauce, tomato paste
    • Wine
    • Yeast and foods containing yeast
    • Pineapple
    • Citrus fruit
    • Chocolate

    Step 2: Eliminate food additives
    Some people react to the food additives such as artificial sweeteners, flavor enhances, and food coloring found in processed and packaged fast foods. These foods include:
    • Monosodium glutamate (MSG) is sometimes added as a flavor enhancer in Chinese dishes. It is also found in commercial soups, soy sauce, salad dressings, frozen dinners, soup mix, croutons, stuffing, and some chips. It is also disguised in the label as sodium caseinate, hydrolyzed proteins, or autolyzed yeast.
    • Aspartame and other artificial sweeteners can trigger migraines in some people.
    • Food coloring, especially FD&C yellow dye #5 and red dye #40, are known to trigger migraines in some people. Check labels, as both are found in common foods such as beverages, ice cream, candy, and some cereals.
    • Nitrites and nitrates are found in bacon, luncheon meats, smoked ham, and hot dogs.

    Step 3: Eliminate foods that contain tannin


    • Bruised fruits
    • Red skinned apples and pears
    • Berries, cherries
    • Tea and coffee
    • Alfalfa
    • Barley
    • Chocolate
    • Nuts
    • Apple Juice, Apple Cider
    • Beer
    • Grape Juice
    • Wine
    • Black and Red Beans
    • Apricots, ripe bananas, unripe peaches
    • Kiwi
    • Persimmons, pomegranates, dates, currants, nectarines
    • Eggplant
    • Smoked meats
    • Most herbs

    Step 4: Eliminate or reduce caffeine
    Although some people find that coffee helps migraines by constricting blood vessels, the blood vessels can swell beyond their original size causing an even worse rebound headache. If using a decaffeinated coffee substitute, be sure to use one that has been Swiss water processed -- the chemicals that are used in the decaffeination process can trigger headaches.

    In addition to coffee, tea and sodas containing caffeine should also be avoided.

    Additional Testing
    A person may have other food sensitivities that may be involved in migraine symptoms. A nutritionist or holistic practitioner can conduct complete testing and create a customized treatment plan.
  18. marw

    marw New Member

    My Migraine diet is exactly like this one, and I do stay on it permanently. It helps tremendously. There are some exceptions. I can have coffee, but not tea. I can eat hard cheese, but not soft. Through trial and error, I found that on some of the things, I can eat them, or can eat a small amount, if I don't get too much.

    I am sorry, but I can't find my copy of the one I use. It was not divided into parts like this, just a long list of food not to eat.

    When I feel a little better, I will look for it and scan it into the computer, or I probably have the addresses of it in My Favorites on the internet. The cool part about my diet was that it was in 2 parts: One says what you cannot eat, and 1 says what you can. So you end up feeling that you still have plenty of good yummy things to eat.

    Hope you are feeling better now!
    Margaret
  19. marw

    marw New Member

    I answered your message above but forgot to put your name in the title so I came back to do it. BTW: What really saves me with Migraine are the Imitrex shots I told you about. But if you don't wnat to take the shots, there are other ways to control Migraine. I first tried those Beta blocker meds? Have you tried them? I had too many reactions and couldn't take them, but many people have success with those and then don't ever get a Migraine at all! Do you have a neurologist who is a headache specialist? Good idea if you can find one. But if not, any neurologist should know about and be able to prescribe these meds.

    Hope you are better. These heaadaches are the pits!!!!!

    Margaret

    P.S. I have them several times a week sometimes, and then may go a couple of weeks without them. Weather triggers mine as well as poor sleep or eating wrong food. Oddly, stress does not affect them at all unless it is physical pain, then it does.
  20. leomonkey

    leomonkey Member

    Thanks for the info... I will write it down.

    The migraine-like headaches use to be worse and the were occuring daily, not just during crashes. I do believe it was diet and regulating sleep mostly that helped improve the situation.