1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
Discuss the article on the Forums.

always feel like something bad is going to happen gloom and doom

Discussion in 'Cognition' started by hurtingallthetimet, May 16, 2012.

  1. free at last

    free at last Senior Member

    Messages:
    632
    Likes:
    128
    feel your pain, i know what its like to feel scared sick, and alone with the illness. It might not help sorry if it does not but heres what i did when i was much more chronically worse than i am now.

    Sleep disturbance is one thing that helps the illness have total control. through the sickness, and anxiety that goes with it, often ME patients go into a bad pattern of very disturbed sleep. I did, it got so bad i was getiing about 4 hours deep sleep about every 48 at its worst. I wasnt a believer in anti deppresants helping. Mainly because even though yes i was deppressed ( how can someone not be when that sick ) If the illness was treated the depression would lift. So advice to take anti depressents felt like a insult to me.

    However, what i didnt bargian on was the drug amitriptyline. Has a chemical that mixes with our own bodys sleep chemical to produce a double knockout effect, But it only really works when taken just as you are about to sleep. if taken hours before it wears off and the effect im going to describe will not work.

    Right if 2 25mg Tablets are taken just as your going to sleep. If you then fall into a deep sleep. you will likely wake about 3 or 4 hours later, feeling like a ton of bricks. you will barely be able to lift your head off the pillow. just close your eyes and go back into a deep sleep.

    The first time this happened to me ( i was very ill and desperate at this time ) i got 6 hours sleep the first time. wow i thought, never knew that it had a side effect like that, so i did it again the next night, same thing happened. another 6 hours sleep. wow 12 hours out of 48. Well i kept doing this, and i kept sleeping. did it stop the illness ? no it did not. Did it help with the exhaustion, and lack of sleep collapse feeling you bet.

    And infact it was helping more than i realized, even though i knew it was a miracle back then. Something else plz try. Every time the symptoms get worse. Fill a plate with many different types of salad veg, beetroot very red tomatoes, celery spinnach water cress, radish deep red pepper avacado. as may different types you can find and tolerate. with that put oily fish, i used smoke salmon, crab prawns ect,I also after reading how raw garlic was a natural anti viral, ( in a dish viruses will grow away from garlic ) chop one or two raw cloves on the salad. yes its hard to eat, but it will help against these viruses.

    If you cant eat a lot try half a tomatoe 1 radish small piece of beetroot, on and on untill all varities are on the plate.

    Its not the amount to start with thats important, its the different types. as they each have there own chemicals and vitamins that can help fight viruses.. Do this everyday. or every other day. and especially when you feel really ill.

    Eat as much as you can, untill you build up tolerance, I also too evening primrose oil. cod liver oil. a multivit. high strength vit C, magnesium, and calcium. at first this should all be fine as your likely seriously depleted in many of these things. But after a while cut back, because the food will also add these things. ( infact many other things the tablet form likely does not contain ) after about two years of this. i started recovering.

    it was slow, i didnt even realize it was happening at first, but it was, the combination of complete rest, natural anti viral ( garlic ) vitamin and chemical releases into the body. will in time tilt the course of the illness. This will not cure cancer. but a persistent viral cause, will be eventually weakened. Because the body will become stronger,

    I got my life back hurting, i thought at one time i was going to die. In not positive out of this regime, what helped the most ( likely all of it ) but the food, and complete rest with hours and hours each day of deep sleep. repaired my damaged immune system. I know it did.

    Many say they can not tolerate amitriptyline, as it causes drowsyness. well thats exactly what you want it to do. when you wake after taking it. it will take a few hours before that drowsyness wears off. do not be worried by that. those that tried it for a couple of days a few weeks can not comment on what it did for me. Because it took at least two years of doing all this to really start to make a big difference.

    At first it didnt stop the symptoms, but as the years rolled by. i noticed i was getting less crashes. they was weaker. and i recovered much faster. I can now go many weaks of being quite well. Even though i still have the virus that started all this. But my immune system recovered. and sort of figured a balancing act with the virus. not allowing it total control anymore.

    I belive when the virus comes out of its dormant state. my immune system seems to put it back to bed, with just the right amount of immune attack. not too much. and not, less than is needed to do so.

    You will not be intirely cured if your ME was similar to mine. but you will recover 80 to 90 % If it works for you the way it did me. Sorry if my advice doesnt help. i belive it will. but i could be wrong. Sorry if im wrong. But i dont know how else to help you. and i can only tell you my life experiance. ive lived with this for about 17 years. the first 5 years were there worst. But people can recover from this. can recover from whatever i had. Be it ME/CFS PVFS or something else.
     
    rosie26 likes this.
  2. hurtingallthetimet

    hurtingallthetimet Senior Member

    Messages:
    612
    Likes:
    115
    sorry i tried to copy and paste like i see others...and it is all in orange...sorry if it is hard for anyone to read it like that all in oragne
     
    taniaaust1 likes this.
  3. hurtingallthetimet

    hurtingallthetimet Senior Member

    Messages:
    612
    Likes:
    115
    free at last...wow that is great info that i think alot will benefit from....thanks for posting it....ive read and heard about the garlic and i do eat alot of garlic but not in cloves...so hoping the other kind the powders work also...it sounds like you have been through alot....and im happy that you found things to help you..

    you are right about the sleep...your pattern problem sounds alot like mine....a good night is 4 or .5 maybe 6 hours but that is after being up the majority of time for days and days straight...then i guess my body is just so exhausted it has to get some sleep...i will be groogy all day..nodding off but no good sleep...sometimes only know i have slept becuase i will dream...then those dreams will alot of times be crazy dreams...i will definetly look into your diet...that sounds very healthy...

    i often wonder if we dont have some illness/virus that hasnt been discovered yet...
    17 yrs is a long time to be ill...im so glad your doing better...maybe at some point as we have these illness longer and longer we get better at some point?

    thank you again for sharing your wonderful menu of suggestions as i said that sounds like it could help alot...maybe you should do a cook book??
     
  4. taniaaust1

    taniaaust1

    Messages:
    8,227
    Likes:
    5,196
    Sth Australia
    It isnt due to drowsiness that many ME patients cant take this drug (when taking it for sleep, it is supposed to make one drowsy)... I stopped taking amitriptyline cause it didnt make me feel drowsy at all so it ididnt at all work.. but far worst.. I had a severe side effect from it..

    It affected parastalsis in my bowel and like gave me a frozen bowel the point where I was unable to go naturally to the toilet no more.. even if things were soft.. I still couldnt go without it being actually manually removed.). Unfortunatetly thou this issue has improved some since I stopped the amtrip.. it still has left me damaged in that area so now Im on more meds due to what the amitrip did to me. :(

    Im not the only one who here with ME in which this drug has had a side effect like this even after its stopped being taken.. another at this site.. in her case it didnt give her like a frozen bowel but rather gave her a permanent frozen bladder.
    Other side effects of amtrip include hypotension so can make that ME stuff far worst.

    anyway.. I wanted to comment on your post as it just isnt the case that many of us have trialed and stopped that drug due to drowiness.. it truely can cause some very bad side effects which in us appear to be sometimes permanent.

    Im not saying hurting should not trial it if it was offered to her..but just that it can be a bad drug for some and drowiness isnt why many stop it... and like all drugs with ME.. take with caution

    but yeah I do agree it may be a good drug for her to trial if she is having sleep issues as thou it dont seem to work for most of us, it does work for some (for sleep its used in dose of 15-50mg just before bed.. many ME/CFS specialists recommend it for that). It can also used for things like FM pain as well as depression too (depression doses are much higher)

    there has been two CFS studies in which high intercellular calicum levels where found in CFS. I stopped taking calicum supplements for that reason.
     
    Calathea likes this.
  5. taniaaust1

    taniaaust1

    Messages:
    8,227
    Likes:
    5,196
    Sth Australia
    Its great to hear that your psychologist is working with you on your embarrassment over being ill issue and that its helping :) . I think once you've fully sorted that out.. it could make quite a difference and you will then be able to then modify the way you lead your life, in more suitable way for your illness.

    One thing about this illness, is that most of us need to make huge lifestyle choices.. and yeah.. its never easy.

    anyway.. best wishes.. and dont give up.
     
  6. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,525
    Likes:
    2,069
    London
    I would have been very happy if Amitrip had caused drowiness at night and no other symptoms. Tried it for long miserable months and my stomach never recovered. During the day I was so wiped out and my blood pressure got so low I was falling over and fainting.

    My serotonin levels are fine and I don't have depression. Really lucky as none of the AD's I tried helped with sleep, pain or had an immune modulating effect. Really sympathise with patients who are depressed and trying to find something that they can tolerate.

    Some PWME are so sensitive to drugs that normal reactions just don't apply. For us it's a try and see for everything. Even small does of Amitrip and stopping/starting was a disaster for me.
     
  7. free at last

    free at last Senior Member

    Messages:
    632
    Likes:
    128
    No of course i understand some may react differently to any drug tried. I only mentioned the drowsy issue because a member mentioned sometime back she stopped taking it due to excessive drowsyness in the day.

    Im surprised that someone found it didnt make them drowsy at all. Wonder how that happens, because if taken at night, i found it mixed with my own natural sleep chemicals to produce what i can only describe as a complete knockout drowsyness ?

    not slight, but like a bomb going off ? maybe bodily chemicals or depletions are different in different patients. i have no idea ?

    The drug can affect toilet, so that again will have to be considered. I was given two other purely sleep meds, that gave some drowsyness. but the effect wore off quickly, and didnt sort my sleep issues out at all.

    As others are finding on certain sleep meds.

    Its as shame the drug doesnt seem to work for all. Because in my opinion it was the perfect drug for sleep for me,

    And is purely a side effect i reckon.

    The depression fighting quality wasnt really something i used it for at all. It takes time for the drug to combat depression, certainly not 1 night.

    yet the positive sleep enhancement happened the very first time i took it. As long the drug was taken just before sleep.

    If others have taken the drug just before sleep and it didnt make them drowsy. then that is surprising to me. As i could hardly lift my head off the pillow. As mentioned it must be somekind of chemical difference between patients or something

    I do know this. It had nothing to do with depression fighting, ( reasons mentioned ) the drug may have saved my life. so others should not rule it out without trying, especially if tolerated and had the effect it had on me.

    Its known to cause drowsyness in most people. So certainly was not just a one off side effect i experianced. But a general one

    Members should not be put off by others bad experiances. if others have responded so well like me.

    we may all react differently to any drug. And if like me your at your limit to how much more you can take from the illness. Any positive effect the drug might give. Could change the course of your illness.

    There is a stigma with anti depressents not being liked in the ME community. in part because of the assertion of its not depression im suffering from. So why should i take a anti depression drug. I understand this view intirely. infact as mentioned i felt insulted by the doctors for suggesting i try them.

    As i could handle depression, what i couldnt handle was the sickness, and lack of sleep. But as mentioned it wasnt the anti depressing effect that helped me the most, it was the sleep effect. of taking just before sleep. where i was basically knocked out big time.

    The one thing i needed back then was to be knocked out. Anxiety when this ill, can also affect sleep. More than a lot realize, or would want to admit to themselves. The more sleep i lost, the more ill i stayed, because of the constant flu symptoms.The more desperate i became to sleep, as i knew it was my only way of fighting back.The more sleep i was losing. the more the illness was winning. And anxiety with sleep worry will start to happen.

    It can become a visciouse circle with many paiteints that has to be broken. if it is not, then likely they will get worse, as many do.

    So those that react well to the drug. That get the drowsy effect. which i belive most will. Could really benefit. But of course if bad reactions occur as with any drug. Then it will have to be stopped promptly. I can only describe my experiances, as others will do. All should be considered, both positive and negative. I can not be the only patient that responded well to this. Especially as early on i was heading for the severe camp, and may have become permanently disabled.

    The sickness was that severe.And it still took me years to recover, even though i was getting 6 hours sleep every night. sometimes more. That has to be worth considering. i dont think i would have recovered without it to be honest. but i hadnt tried other similar drugs so i have no idea. Those that may think i just had depression, or sleep anxiety ( i did have sleep anxiety reasons mentioned ) Are just plain wrong. if anyone wants to know why i know this. then i will continue. I worry about giving advice, either way, someone says something negative, a patient may not try it, and it could be the one thing they need ( as i did ) Say something positive, and it makes them worse than. im to blame. What to do ? say nothing of my part recovery and how i think it happened ? Sometimes i dont know. I just want to help the sever cases. I know whats it like to live in that hell.Im still traumatized by those memorys. I think i at least have to try to help with my own lifes experiance, be it risky or not
     
    rosie26 likes this.
  8. free at last

    free at last Senior Member

    Messages:
    632
    Likes:
    128
    Hi hurting. your welcome. i just want to try to help if i can.

    you need to break this cycle you mention here

    you are right about the sleep...your pattern problem sounds alot like mine....a good night is 4 or .5 maybe 6 hours but that is after being up the majority of time for days and days straight...then i guess my body is just so exhausted it has to get some sleep...i will be groogy all day..nodding off but no good sleep...sometimes only know i have slept becuase i will dream...then those dreams will alot of times be crazy dreams...i will definetly look into your diet...that sounds very healthy...

    If this sleep cycle is broken, in time it will allow your body to start to fight the virus or viruses, i belive are at the heart of this illness. But of course the food advice plays a big part too. its like a two hit wonder against the illness. sleep to repair damaged cells and damged immune system. High quality food to repair damaged cells and immune system. Its like a fuel that the body badly needs to start to rebuild itself after the assault the illness does to the body. Many chemicals and vitamins get depleted by this illness. sometimes seriously so. It gives your body the ammunition to try to repair itself. it will not repair cancer. but a viral cause can be combated by the bodys own defences to a degree. Certianly sleep helps repair the immune system. Some of the food adviced i belive can also do similar. its the highest quality fuel your body can get.
    So my advice is start straight away with all the foods mentioned. Eat it religiously. Find a way ( or a drug ) to fully restore sleep. Do not allow yourself to get anxiouse about sleep. ( its very hard i know ) do not constantly look at the clock to see how much sleep you have ( in my case hadnt had ) it actually feeds into more anxiety. which in turn makes the problem even worse. its why the drug amitriptyline worked so well for me. i was so knocked out after taking two just befor sleep.. that worrying about the clock, and time ive slept. started straight away to become secondary to closing my eyes and just dropping off again. and again and again again. in the first 3 months i slept almost every single night. In time if you crack this. I would love to hear you say. The crashes appear to be getting weaker. and i seem to be recovering faster. I hope my advice isnt wrong. it worrys me. But i know where i was as a patient. And i know where i ended up. from the darkness to the light Hurting
     
  9. taniaaust1

    taniaaust1

    Messages:
    8,227
    Likes:
    5,196
    Sth Australia
    No doubt that is so... there are many differences in body chemicals etc which are happening in ME/CFS between the different subgroups. Ive found it to be helpful to find out what is helping others, who have the same kind of ME/CFS presentation as me (so in my case I look to the ME group).. often things which didnt work for them, also dont work for me and visa versa.

    That's true but strangely Ive noticed when going throu other posts.. it seems from my own observation of various posts on this site from those who have tried it, to be those who have ME/CFS as well as coexiting depression too in which this drug seems to be most helpful and work the best for sleep (even thou its not being taken at the depression rate).

    here's one of my threads on it (it didnt help me to sleep at all at night but irronically it caused me to have more postexertional symptoms so made me start sleeping at times during the day due to making me severely "ME crash". http://forums.phoenixrising.me/index.php?threads/slow-decline-while-trialing-amitriyline.15693/

    summary of comments from a thread on it
    negative on it
    hixxy posted it was the worst drug she's ever tried cause it gave her neuro symptoms etc..one of the neuro symptoms it gave..hasnt gone away.
    snow leapord tried it and was then unable to stand up in the morning due to the OI it gave
    peggy-sue tried it and thou it helped her sleep..it caused her very blurred vision so she couldnt continue it.
    livingdead (just said he/she'd tried and it dont advise taking it)

    postive and able to take it
    snow athlete was the ONLY person who replied who'd had a good experience on it and who it didnt get very bad effects to.

    This pattern Ive seen consistantly throu various ME/CFS forums.. most of us cant seem to take it (and even when we do, it may not give the desired affect). Is like most drugs with this illness..its a very hit or miss thing.




    That's what i cant understand.. why someone who knows they have depression would be against trialing them?
    Most of us who are against them.. are against them cause we know we dont have depression and cause we also know our bodies react very badly to them (I ended up in hospital for a whole week after a bad reaction from an anti-depressant). it is VERY COMMON for ME patients to do poorly with SSRI drugs. (actually there are two ME/CFS studies which ended up showing that ME/CFS patients had high serotinon levels.. maybe that is why some of us do so poorly on them?)

    I think sharing experiences is important.. it is by many people honestly sharing that gives a person a more complete picture of things and can help them work out if something may fit their case or not. It dont matter if ones experience is positive or negative. No one is wrong when it comes to just sharing and not implying something will or wont work for another.. as in truth, none of us know.
     
  10. free at last

    free at last Senior Member

    Messages:
    632
    Likes:
    128
    Hi Tanaaiust and uk xmrv
    Its a interesting discussion. What does confuse the issue of course, is diagnosis. Did i have ME, do you ? does anyone ? what actually is ME ? well from what we know its a collection of symptoms. which really is a cop out, because a direct cause that is the same for everyone has not been found yet, so we are left with diagnosis by exclusion which is really quite dangerouse. as the potentiall for similar but different illnesses being lumped with the same lable is huge.

    Often there is huge variable in those symptoms from patient to pateint. There has been discussion on this forum recently about PEM being the cardinal symptom that can correctly diagnos ME from other conditions. The only problem is, its becoming increasingly clear that might not actually be so. As pem can occur in other conditions.Some of which like ME there may not be any sign of cause with the standard testing thats often done by health services. Especially in the UK.

    Do we catch ME? can we get ME from a car crash? can we get ME from chemicals, or vaccines ? the problem is apparently yes to all of them. And possibly no to all of them. This should start alarm bells ringing loudly. Diagnosis by exclusion. ( or even inclusion ) is not definative enough in my opinion. we really need a bio marker to finally say with 100% certainty ME is caused by this. and this test will show if you have it or not. Its all a mess and has been from the begining.I had PEM quite bad in the begining, first 5 years, and then for another 10 it seemed to be variable PEM. what the hell is variable PEM.

    Do i have PEM or not. some may say there PEM is not variable therefore i have ME, but you do not. Well im afraid thats a little shortsighted. As my PEM was pretty consistent untill recovery started. then it became variable.

    There really is way too much confusion about what ME actually is, what causes it. if there is multiple causes ( if so how ? why ? ) Viral onset ME can not be the same as car crash ME ( im sure a read a case where someone seemed to develop it after a car crash ) the diagnosis through exclusion ( or inclusion ) is on shakey ground.

    I know this view will not be popular, but clearly there is problems.So even comparing patients reactions to drugs is very confusing from that standpoint alone

    Aside from Pem, and the other symptoms that need to be required to diagnos ME. I belive my illness was viral in nature. Which was why i so stronly belived in XMRV it fitted my life experiance very well. At last i thought this it. I dont have ME. ME is just exclusion symptoms thats not a cause. its exclusion symptoms. what i really had was a retro virus. that produced similar symptoms to other patients, that may have had a different retro virus. or just a virus. EBV ect.

    I belive i still have this virus. And its taken many years for my body to learn how to live with such said virus, in as close to harmony as it can. But others like Cort did not have this sudden viral onset. have we the same illness. i havent a clue. will we react differently to drugs. yes likely. is the type of illness a indication of how the drug affects a patient. well likely yes. But also posssibly no.

    As there may also be more to that question than just illness type. I want to know what this virus is.

    whatever it is, it behaves like a retro virus.It can be dorment. but can strike out of the blue also. But unlike HIV does not appear to self destruct the body in a fairly consistent pattern in time of years. intstead it seems to smoulder, and many factors will influence its hold on a patient. sleep. anxiety. nutrition. ect.

    If there are any studys looking for viruses, i wish i was part of it. Though after being told i had xmrv from Judy positive from 3 different methods. in the ashford 50 study. I will certainly think are they right this time ? if a new virus was found. Cats are something that ive always belived could play a part of this. as i had many cats with litter trays when this illness started with very high temps. None of this of course is meant for the poster of the thread. ive said all i can to try to help. But these questions are so important i often try to talk to others about them. so many unknowns. and very confusing contradictory knowns in the world of ME
     
    taniaaust1 likes this.
  11. Hip

    Hip Senior Member

    Messages:
    3,236
    Likes:
    3,112
    Feelings of doom can be symptoms of a gut infection with the parasite Blastocystis hominis, if you have caught a pathogenic strain of Blastocystis hominis. Some info on this bug here.


    This infection is treatable, using a special cocktail of anti-parasitiec drugs.
     
    taniaaust1 likes this.

See more popular forum discussions.

Share This Page