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Tania's journal of drug treatments and other ME things

Discussion in 'General Treatment' started by taniaaust1, Dec 28, 2011.

  1. taniaaust1

    taniaaust1 Senior Member

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    Disasterous Chemist Trip with a collapse

    Chemist trip didnt go as well as I hoped and was a bit of a disaster. Most of their things for bowels, contain artifical sweeteners.. or have amounts of sugar in them (so hence the paraffin were out.. 22g sugar a dose!!) which I cant have or were things which Ive already tried but arent working. I did thou buy some suppositories so hopefully that will be my answer which I'll take with the non gluten form coloxyl and along with fibre, till I can see the bowel specialist. Pharmacist said I should be okay to almost slowly double the max dose on the pill container so I will be doing that too.

    The head pharmacy guy was an idiot... He kept on saying to me.. you just need fibre and to be drinking more and exercising.. and when I told him I'd already done those things but cant exercise due to ME/CFS.. he then harped on about that I should be exercising... he completely ignored all I was saying.

    Due to the issues at the chemist, I was standing a while and by the time I stopped having to argue with the guy... I was dizzy as the POTS was flaring. Too dizzy to be able to then walk out of the pharmacist so had to quickly sit on a chair. Unfortunately Id left my carer sitting out in the car so had no way of telling her I needed help to the car. I sat there but unfortunately sitting dont help my POTS and when I get like that, I need to have my legs up or lay down.. After 8mins of sitting there,, hoping I'd recover enough to get myself to the car she showed up as she'd come looking for me.

    I thought I may be okay to walk to the car with her by my side to help support me if I started getting all wobbly but unfortunately I made it only just outside the pharmacy door when I found myself suddenly going down like a rock, didnt even have enough warning to be able to grab her thou she was right near me.
    If she hadnt been there and I went to grab her (according to her.. I have no memory of that), I probably would of tried to lean towards shop window for support to stop my fall.. as it was .. I hit the shops window ledge going down and skun my elbow :( (Im grateful I just didnt go throu the glass).

    Ive only had this support person for a couple of months so this was the first time, she'd seen me actually have a POTS collapse. Her comments to the event I found interesting.. she says I turned right around to her (I dont remember turning to her so I guess it was a subsconcious reaction) and was strangely looking right throu her and I was pale.. and she knew at that moment due to the look in my eyes something was very wrong with me even before I started to fall (no eye awareness of her, she said it just didnt look like i was there) .

    Then she says i just suddenly went down (I just remember suddenly falling..dont remember the reaching out trying to grab her.. or the turning around and looking at her).. she said she tried to grab me on the way down but she didnt quite manage to grab me as too fast, so my hand just touched hers.

    Ive had to send her home early as she's cleaned up here and I had to be taken home and just couldnt get the rest of what I wanted to get today.... half an hour laying down at home.. I was still showing POTS signs (including a tremor in my voice). Im just not going to risk another collapse while out today.
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    have u considered buying psyllium hasks from the healthfood shop, this is the basic ingredient in alot of over the counter laxatives but normally they add artificial sweetners or sugar. U could put a couple of table spoons full in a small glass of water, quick stir and drink but follow it up with a full glass of water. Initially use a small amount of water as its easier to scull it down quick. it does turn into a gel and makes u feel full.

    Ignore if u have tried it, its more of a stool bulking/softening supp.

    Sounds like your getting very frustrated, probably why u had the pots attack.

    I hope u have a moving moment soon.

    cheers!!!
  3. aprilk1869

    aprilk1869 Senior Member

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    Tania, you need bacteria to ferment the fibre. Fibre on its own apparently won't do much good. I suggest you have a read at Dr Ayer's blog as this is a subject he talks about frequently:-

    http://coolinginflammation.blogspot.co.uk/
    taniaaust1 likes this.
  4. taniaaust1

    taniaaust1 Senior Member

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    Yes ..stress isnt good for POTS.

    Yeah psyillium husk was already part of the added fibre in my diet and something which helped before my issues got far worst. Ive been on that or other fibre supplements for years as I needed them daily.

    I think I now do thou have part of the answer to my issue.. someone pmed me saying from my descriptions of my issues that it sounded like I had a rectocele. (I deleted some of my post as it was too graphic but maybe they'd read it all before i deleted. but basicallyl my bowel was about to come completely outside of my vagina and body and that is why I was getting so freaked out and desperate by this.. if i hadnt gone for another day or two.my bowel would of been all the way outside of me. ..it had reached a point where it was level with the enterance and expanding out further every day) http://en.wikipedia.org/wiki/Rectocele

    So Ive looked that up on wiki and yeah it sounds like I certainly do now have that (my gyno had commented that I had weak/thin vaginal walls a couple of years ago).. so that would be making my issues much worst as things are getting caught in an area which seems beyond the normal rectum, hence the need for it to be manually pushed to the right spot (interestingly wiki also mentions people having to do that with a rectocele.. fibre dont work for that issue its its trapped in like a pocket in the bowel).

    By the rectocele descriptions my problem may be more then a moderate one . sighs Im only in my early 40s too ..so young to have this issue .. so it now seems not only do i have constipation issue but also now this too... all due to what ME has done.. my whole body is weak and stuffed up. Im now thinking about also seeing my gyno about the issue (gynos also deal with this kind of bowel issue and I have a gyno Ive seen quite a few times)

    Im right now okay (thou havent gone in 36hrs.. not concerned yet.. Im prepared to DOUBLE MAXIMUM pill dose).. it took 3 suppositories in a couple of hours to clear things.. and Im now taking OVER the maximum does of coloxyl (the non gluten one) which Im now taking daily until I can see a specialist to tell me what to do.. as well as still taking my normal fibre.

    Hopefully I wont be needing surgery. anyway.. all females out there who have IBS-C due to the ME.. watch out for this rectocele issue. The other who told me about this had had surgery for one and she's not all that old either (thou this is supposed to be an older persons disorder).. so maybe this issue is common in ME.
  5. taniaaust1

    taniaaust1 Senior Member

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    UPDATE ON VARIOUS THINGS

    Its been a big issue as my carer/home support person is off as sadly her grandchild died, so she's flown interstate to be with her daughter, so the agency dont know when she'll be back to work. So that means Im either not having someone show up due to agency having no one spare to replace her or Im getting new people show up to help me, this is causing big issues.

    A fill in support worker came yesterday (after I phoned the agency saying there was a whole weeks worth of dishes sitting on the sink) but arrived covered in perfume, agency person didnt look at my file so didnt tell the person coming I have MCS. I had to immediately send the support worker home to get changed (as it couldnt be washed off as she'd actually sprayed all her clothing on the outside with perfume too). It took half an hour before that room aired out and I could be in there again even thou she'd only been in it for a few seconds.

    Once she got back with new clothes on etc.. she did my dishes then went to take me out shopping... unfortuantely AIR FRESHENER in the car. (I really dont understand how people when you tell them that you are sensitive to chemicals etc.. why they dont figure out you are likely to react to an air freshener? ). She goes "that will be okay as its old.. it was opened a few days ago" :( :( ... it actually did smell nice thou but THREE DAYS.. ohh that isnt an old air freshener!! So I hopped in her car praying I wouldnt react to it ...

    We drove the 3 mins down the street and I went to get out of the car, only to find that by then I couldnt stand properly and hence had to grab hold of the car door not to fall down onto the wet road,. (I really didnt want a repeat of 4-5 months ago when i went down in a puddle in shops car park and couldnt get back up so was on ground with my skirt sodden wet). So she's like telling me to get in, get in cause Im wobbling all over the place, holding myself up by the door.. while im saying.. i cant, i cant.. your air freshener has me about to pass out.

    Ended up putting up my cane chair in the car park ont he road bit before I fell down.. even thou the footpath was only about 2 metres away (but I would of went down before I got that far). After sitting there a couple of minutes, she helped me onto the foot path and we set up my chair there. while she rang the agency boss on what were we going to do as I now was stuck.. too sensitised to the chemical to be able to go back into her car.

    The agency boss ended up driving from the next town and the support worker left to meet her, to give the new support worker her car to borrow to take me home. I had to wait out in the cold for 20mins while car switch was going on.. Sadly due to all the drama and time wasted, I then didnt get my shopping all done. It sucks as that is two weeks straight Ive had severe issues with not being able to stand or walk when ive been taken out.... (I had to be left sitting out in cold on footpath while support worker went into the post office for me etc etc)

    I have the same worker coming twice next week... so she should understand my situation more now so wont be doing that one again.
    ......

    As far as the bowel issues go. I started taking glycerine suppositories only to find that when i then tried to go.. suppository just came back out but nothing else (worked its way around the full bowel)... After taking 3 in a matter of an hour.. finally had some success. The doctor has now put me on microlax enemas for the issue.. and those.. well they are amazingly.. I had bowel peristalisis like I havent felt for so long.... thou very very painful if i leave things too long. So that is what i'll be using till i can see the bowel specialist for advice.

    I had a pap smear the other day (doctor had a lot of trouble doing it due to the constipation being in the way so found it very hard to find my cervix seeing it couldnt be seen due to that).. but doctor when I asked.. doesnt think i have a bowel prolapse but thinks my vaginal region is being affeccted just cause I was so blocked up. She said she will be interested in what the speicalist says. (she was very sympathetic and commented on how uncomfortable it looked).
    ......

    I had another nightmare menstational period this month with pain.. day 2 of it.. its so so bad. Ive had 3 extremely painful periods straight.. at least this month I didnt cry due to it like last month, but last night I tried to sleep in the bath due to it.

    The ponstan tablets and the 2 panamax tablets (1000mg dose) didnt get rid of the pain so it kept me up ALL NIGHT. Usually the bath helps and I can sleep in the hot bath, but this time that didnt even work and the pain was still there. Finally the pain went away around 6am this morning..so then I was finally able to go to sleep. Now Im just hoping that that pain messing up my sleep last night hasnt completely screwed up all my sleep again (as currently still was going well there with just the melatonin haveing to be taken).

    I really dont know what to do about this issue but I do not want a hysterectomy to solve it (my gynos suggestion). Im going to go back to my female doctor and beg and plead with her for another solution as I dont want to be experiencing that every month. (I can handle it happening every couple of months or so..but not every single month. I dont want to be crying or nearly crying due to pain every month).
  6. taniaaust1

    taniaaust1 Senior Member

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    Confidence, oh that Im not

    I used to have an average level of confidence, before I got sick. Over the years this illness has eatten this more and more away. Nowdays I can really struggle in confidence to the point that this does affect my life a bit, makes me scared to try new things without help etc as I fear so much of failure. This illness has brought one lesson of failure after after failure, as Ive tried many things, only to not succede, due to the unpredictability of the illness. (Im a college drop out due to it).

    Irronically, this is an area I may end up needing something like CBT, IF I ever RECOVER from this illness as "failure" has affected me so bad (or if I was healthy, would I just then automatically regain my confidence again as then things would be working out far better and life would be predictable again?).

    I commonly have bad dreams as Ive even got having ME in my dreams. In my dreams the failure in my life and the kinds of things I struggle with with ME are represented (my subconciousness expressing my inner feelings, so I know its all affected me on a deep level). Eggs to me symbolise the basics of life, so this dream represents my failure in basic life, struggling to manage life. The dream I had last night, I'll call this The Egg Dream.

    The dream - Im at high school and our lesson today is to make up a certain recipe, which has the main feature of an egg done a certain way, that is hard boiled. The teacher is instucting the class but I miss all the instructions on how to do it for some reason which isnt really making sense to me (Im UNABLE TO COMPREHEND). Fear starts to kick in as Im STRUGGLING to listen and comprehend what Im supposed to do and know Im going to have trouble.

    I go to do the egg and start shelling it. Only to find its falling apart on me and A MESS. Everyone else in the class their eggs are coming out PERFECT, I dont know what to do. Thou we were only supposed to use one egg, I start looking for more eggs to try again and do find one which I take....really thou hoping I havent taken someone elses due to my CONFUSION. I peel that egg too but the same thing happens, its a ruined mess.

    The teacher notices my issues and says something about cook eggs... to which I suddenly realise I FORGOT to cook the eggs before shelling them :( , my brain forgot the very basics of what to do. Weirdly thou.. my eggs were still half cooked even thou I didnt cook them, I tell the teacher that but Im NOT BELIEVED. (this whole situation with failure after failure makes me more and more upset)

    I look for a fourth egg to try again and take another one but not sure if its someone elses or not, so end up putting it back. I then try to sneak away from class...hoping to convince a neighbour to give me an egg to cook. That FAILS too as Im unable to get another, so I fail the subject at school as I cant even cook an egg.
    By the end of the dream I wake up feeling quite upset with a big adrenaline rush going on.
    .....
    It's kind of sad that I cant have nice dreams due to the illness impact. In the above dream.. that egg also would be representing myself.... a broken up mess of an egg. The half cooked egg even thou in the dream it didnt get cooked, would of been representing the unpredictability of my life.. completely unpredictable to me and to others that the egg came out of its shell like that. Half cooked egg, representing that Ive only done half my life goals.

    The fact I kept on trying even when I stuffed up over and over, doing whatever I could to try to succeed, is how I are in life. Hopefully I will never give up.

    (If anyone wants help with understanding dream interputations and what the subconciousness may be expressing.. feel free to private convo me.. my B12 injections are now starting to work again (it took 4 injections until I saw improvement with memory again) and I are thinking a little better. My past learnings in psychic and dream symbolism coming back to me just a bit).
  7. taniaaust1

    taniaaust1 Senior Member

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    UPDATE. Bowel specialist appointment - Epsom salts, modification to bathroom, CFS specialist - POTS medication dose change

    I was taking regular enemas leading up the the specialist appointment but finally got to see the bowel specialist (he was very nice and put on his gloves .. had me pushing while checking out my bowel and he confirmed I have a large prolapse (rectocele) caused by the IBS-C etc (as everything just moves into the prolapsed area and wont shift out from it as its stuck from there).
    So the GP I saw the other week was wrong and didnt know what she was talking about.. all of what she could see was a huge prolapsed area but didnt even recongise it as a prolapse!! (GPs always seem to get stuff wrong).

    It took some time at the appointment to work out what to do with me due to my issues with sweeteners and sugars. He was looking up the ingredients of one thing after another on his computer, only to find out they all had things in them which I couldnt take. In the end he decided to take me the old fashioned route... Epsom Salts. (I dont think he uses this for his patients much as he had no idea of the amount to prescribe).

    In the end he told me to take 2 tsp of epsom salts in a glass of water (its sooo horrible!!!), every 2 hrs till things started really moving. He told me to then work out how much Epsom salt I needed to stay in a diarhea state for 4-5 days to try to clear my whole system out.. and with that he hoped the prolapsed area would go back to where it should be and stay there. (He didnt sound all that hopeful and did say that I may end up needing surgery).

    I wasnt sure if the Epsom salts in the supermarket were of medical grade or not (as instructions on supermarket stuff didnt say anything at all about taking it by mouth so that made me wary).. so I ended up going to the chemist and buying some there for 3-4 times the price.

    I ended up needing to take 50g of Epsom salt per day!! (the dosage on the container is only 15g per day). If anyone here has constipation issues and needs a clear out.. I can certainly recommend that Epsom salts work!!!!. Espom salts have no nasty little additions to it. (I got no cramping or anything from it but then maybe that was due to how non functional my bowel was being).

    Im now off the epsom salt and back on just the fibre, hence now seeing if that 5 days of my bowel not having any stress/pressure onto it has allowed it to heal a little and hopefully work better. So far so good but its still to early to know what its really going to do. (but i have been able to go to the toilet naturally past 3 days with fibre alone..so that's looking hopeful).

    The bowel specialist told me to come back in 2-3 weeks but Ive made the appointment to see him again in a month (as its just too hard to get to medical appointments).
    ..................

    The goverment housing agency mantanience guy came and did modifications on my bathroom... so I now have a large support rail which isnt going to snap on me like the others kept on doing everytime I had to grab in a collapse.

    While he was here.. my garden guy unexpectively showed up and done a days work on my garden (still more work there to be done). This ones changing me an okay amount s($25 per hour) so fortunately i can afford to have it done now.

    ..................

    I saw my CFS specialist (Dr Del Fante) a couple of days ago and that appointment went well (thou it felt really rushed).

    I didnt get to bring up a lot of what I wanted to speak about either cause time ran out fast and by the time we discussed how my appointment with the bowel specialist he'd refered me too had gone (he hadnt got the letter from the other specialist yet as it was only last week)... and discussed last blood test results, took my BP, discussed the POTS stuff and med change and once again I told him about my orthostatic hypertension.. the appointment time was up.

    Except for my high cholesterol level going up yet again.. my highest level ever..its gone up more in past couple of months, other then that he said my last test results were good (the Florinef isnt giving me bad test results).. so he's said I can double my dose. I will now be on 1 tablet (0.1mg) Florinef instead of a half a pill. He wanted me to go back and see him in 2 weeks for more blood tests to check on the increased Florenif dose and to have my BP taken again.

    (due to my transport issues etc, I ignored the 2w eeks and booked my next appointment with him instead for 3 weeks time, Ive been extending all my appointments out further as its all too hard... too many appointments. If I can extend all my between appointment times out twice as long..that means only half the amount of appointments to get to.. unfortunately thou that too means things take twice as long to sort out..but its just too hard to keep up with all the specialists).

    He took my BP for the first time while I was standing (i insisted he didnt just take it while I was sitting). and I think he must of noticed a spike as for the first time he suddenly then showed concern over my BP (and said he wanted to take it again in two weeks time to make sure i tisnt going too high). Im concerned that if he sees it go extremely high like it sometimes does, that he may blame the Florenif and pull me off the med.. when in fact my BP has been doing that for several years now (Ive only been on Florenif this year.. if anything ..by correcting the low blood volume issue, the Florenif should help stop it from spiking up so high).

    I also asked him for some more Temazepam, wasnt sure if he'd give me any more or not as my previous lot I'd got the prescription from a CFS specialist just before he retired (which would of been around the start of this year). He was okay about giving me a prescriptionfor it. :) (so Im not going to be left struggling to deal with sleep issues and have that to fall back on at times).

    .....

    The 2 cheap heart monitors I ordered thou ebay (one was only $1), arrived... but I havent had much of a chance to play about with them yet.. thou one doesnt seem to be able to handle my erratic heart beat when Im standing..with it only working when Im sitting. (havent tried the other yet).
    ......

    Ive had sleep issues back again (melatonin alone stopped working) and ended up having an interesting unexpected postive reaction to my Temazapam.. but I'll go into that next time I post as this post is getting rather long.
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    good to see your getting somewhere tania. Pity about the sleep but u have fixed it before, im sure u can do it again.

    cheers!!!
  9. taniaaust1

    taniaaust1 Senior Member

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    I ran out of my normal melatonin I use last night (one pharmacy puts together) and hence started on the very cheap melatonin (brand is Natrol) my boyfriend had brought back for me from America (both are 3mg). To my surprise.. after taking the American one.. I was asleep in 20-30 mins!!! and I woke up this morning feeling the best I have done on waking in 6 weeks.

    I dont know if this is a coincidence or not as my other melatonin for the past week or so hadnt been working at all. (ended up taking Temazapam at 4.30am cause I had doctors appointment at lunch time in city)

    Interestingly this new melatonin has some additions in it which I wasnt aware of till I saw this morning, it has an ingredient list on it (so maybe it was the combo with helped?). It also contains B6, calicum, magnesium sterate and silica. It also has something called Acacia in it too (whatever that is? I thought Acacia was a native Aust shrub/tree.. so Im confused what is in this american Melatonin.?)

    Anyway.. it will be interesting to see if its just a coincidence or not that I was asleep so quick after this one and woke up far better then normal.
  10. taniaaust1

    taniaaust1 Senior Member

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    Your post about sleep and my reply before.. has suddenly just triggered a memory from last night.. a sudden partial awakening I had. I woke up very suddenly last night as I was getting no air... that feeling of holding breath for a long time and air desperate. I must of had a long breath holding incident in my sleep.

    Ive never had a sleep study done and as I never have anyone stay the night so wouldnt know if abnormal stuff was happening in my sleep.. I dont know if I may of developed sleep apnea? or would the above incident be a normal thing.. maybe something only happening on rare occassions?

    If I hadnt been thinking a lot about how good I felt this morning and how well the melatonin seemed to work.. I dont think I would of remembered last nights sudden awakening with the desperate need to breath as obviously I hadnt been doing so.

    Maybe I should push a doctor for a sleep study?
  11. taniaaust1

    taniaaust1 Senior Member

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    I hate Invisible Illnesses!

    It's like having an invisible illness gives others permission to be rude and just ignore you and your health. This rudeness also extends to ones own home when others come to your door. The ones who bug me the most, where I should actually be safe - at my home... are Sales People.

    Today I was on the phone when two salespeople showed up at my door. My support worker was at my house at the time so she answered the door and sent them away (telling them I was busy and if they wanted to see me they'd have to come back later). A bit later, she'd gone to the loo and the sales people show up again (this time I was right in the middle of trying to eat my breakfast).

    So I end up stuck STANDING (which isnt good for me at all) at the door with these two sales guys who kept ignoring everything I said while trying to get rid of them eg I'd just signed a new contact with my electricity company only 2-3 weeks before..but ignored me completely when I told them that as they were still determined to try to get me to change suppliers. I ended up really really needing to sit down, so I told them I need to go and cant talk to them no more as I cant keep standing at the door as my health is bad and Im likely to collapse.

    Their response is "well we will only be a moment". So I tell them again. I need to go, they respond "but we wont talk to you much longer".. but I NEED TO GO... My head by that time is getting very bad, I starting to tremor and Im about to collapse at any second. In the end.. I start to collapse, so grab hold of screen door and at the same time as Im holding myself up... I loss it emotionally over the fact that they've just made me sooo ill and are at my door with not a bit of respect or care at all for me.. Im about to collapse and all they care about is getting a sale.. I ended up flipping out completely and before I knew it had hit one of the electricity sellers in the face. :( (day before my period and the ME also makes PMS worst.. so I nowdays have PMDD..so also affected by that).

    My carer had just got out of the loo by that time and came running at the bang (as she thought I'd collapsed (but it was me falling into the door due to being about to collapse and grabbing a support rail). She got to me..finding me shaking and holding myself up with the rail and the seller who I hit standing there saying "she hit me, she hit me, I cant believe she hit me".

    To top things off.. the sale people then lied to her about what happened.. telling her ..that they'd told me to sit down when I'd told them I couldnt keep standing there. (They never even said that!!! all they did is ignored everything I said to them. Even if they had said that..there was NO WAY, I was going to invite them into my home just so I could sit down).

    I was so upset and freaked out over hitting someone again.. that then all the food I'd prepared that morning (which was going to be my snacks for the next 4 days)..got burnt in the oven as I was in bed feeling very unwell due to the POTS due to them having me standing like that... and crying over what had happened (so support worker was trying to comfort me) and hence forgot I was cooking. (the home support person ended up remembering I'd put food in the oven but by then it was burnt black, so we had to throw it out.. and till I can go shopping again, I cant make what I was cooking again. (The home support person dont came back to take me shopping till Tuesday)

    We ran out of time today cause I was in bed trying to recover from "standing" with the salespeople, so then couldnt get the few things I wanted from the shops either.

    anyway.. I HATE salespeople and people who completely ignore how sick one is when one is telling them. I hate people who dont care at all if Im about to be on the floor possibly unconscious.
  12. Tito

    Tito Senior Member

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    Tanya,
    I feel for you as I have the same orthostatic intolerance problem and people ringing at the door are a nightmare. Nowadays, i don't even answer anymore. Full stop.
    Did cortisone helped you? I'm about to start but i don't feel comfortable about this drug.
    Tito
  13. taniaaust1

    taniaaust1 Senior Member

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    Tito.. i'll reply to your post next time Im online.. too ill today to be online, so just doing one quick post and then going straight back to bed.
    ..........

    Im feeling like death itself but amazingly to look at me.. I appear to be looking fine (I cant believe I dont look as white as a ghost as that is how I feel).

    Im feeling dizzy and have a headache.. reason unknown (I havent overdone things today or yesterday) but Im starting to suspect that the raising of the Florinef may be causing me to feel like this. I also are feeling sick and nauseus and keep going into head tremors (which go into head shakes side to side).

    I feel cold but when I try to warm myself.. my dizziness and head etc gets worst. (i suspect my attempts to get warm is setting off the POTS more). Im uncomfortable as I have no choice but to remain feeling cold or Im getting sicker :(

    I havent felt this aweful for a while, hahaha probably days ago but I forget.. Ive had thou this a bit I think since Ive upped the Florinef. Anyway, this is dreadful as Im too ill to be online so are going to have to go straight back to bed when Ive finished this post. (hopefully my electrolites arent all screwed up.. I havent had them checked yet (as per specialist said to do) since I had the dose increased.. Im having to wait till I can get to blood place and the docs as my boyfriend who is my transport to medical places is interstate.

    I found out the other day that Florinef isnt at all recommended to be taken with Epsom salts..as they both screw up electrolites and hence can work negatively together. So its a worry that Ive both started Epsom salts and upped (doubled) the Florinef without a blood test done yet.

    oh to top all that off.. I also now have diarhearr. Using Epsom salts to deal with constipation and the prolapse..now has me getting diarrhea with me going up to 6 times a day, even thou I are taking less then a normal dose of Epsom salts now and trying to only take them for maintence. Its like I just cant get the bowel things in balance.

    I really really hope I feel much better tomorrow.. I feel like Im dying. I feel like im going to throw up and sitting is making me feel like im going to pass out.
  14. Marlène

    Marlène Senior Member

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    Edegem, Belgium
    tania

    Hope the salesguy still has pain in his teeth ;)

    Are you on cortisone? This slows down the intestines a lot in a lot of people.
    If it is to support your adrenals, you can try 2-4 cups of licorice root tea a day.

    Have you tried organic raw sauerkraut yet?
    http://www.red23.co.uk/Raw-Sauerkraut-Organic-15oz_p_163.html

    http://www.azurestandard.com/shop/product/4133/

    http://www.rejuvenative.com/products/salt-free-cabbage-and-dill-sauerkraut/

    http://www.edenfoods.com/store/prod...ucts_id=103900&eID=8o0976acpa3m084vvenmm6fuq2

    http://www.culturedprobiotics.co.uk/products/Raw-Sauerkraut-750g-.html

    http://www.rawhealth.uk.com/product-562-7.html

    http://www.peak-nutrition.co.uk/bra...ggpnBNA-1615&gclid=CIre55z8u7ECFcODDgod_QMAWA

    The story of someone who got rid of rosacea with raw sauerkraut, I know it's different bit and at the same time, we're talking about general inflammation and intestines
    http://www.rosaceagroup.org/The_Ros...hp?24183-I-found-relief-eating-RAW-sauerkraut
  15. taniaaust1

    taniaaust1 Senior Member

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    Sth Australia
    Which cortisone...

    Fludrocortisone... yes that does definately help me for the POTS symptoms. Half a 0.1mg pill I find good. Im not currently noticing more of an improvement with doubling that dose to a full pill (still trialing that).

    Hydrocortisone.. thou I have low cortisol (2 out of 3 24hr urine cortisol tests had out of normal range low results).. low dose hydrocortisone seemed to do nothing to help me. (maybe I thou should of trialed it a bit higher seeing I did have abnormal test results?).
  16. taniaaust1

    taniaaust1 Senior Member

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    Currently on the Fludrocortisone for POTS.. (low dose hydrocortisone in the past didnt seem to do anything thou I have abnormally low cortisol test results.. maybe I needed higher dose). Would licorice root tea have stronger effects then low dose hydrocortisone? (Ive tried tons of herbs for ME/CFS stuff in the past with no luck). My adrenals dont respond to stress/exercise as they should...

    I havent tried raw sauerkraut, thanks for that idea (those links are interesting), that may be worth a trial.
  17. taniaaust1

    taniaaust1 Senior Member

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    Im feeling good today.. after that very bad day yesterday which I still dont understand why I got so sick then but realise now that it couldnt have been due to the Florinef and Epsom salts.. but something to do with the ME. (I often get ME fevers but lately have been noticing more and more that I arent aways aware when a fever is giving me more symptoms).

    Last night I finally worked out.. (decided to take my temp thou I wasnt feeling hot) and found out I was running a fever. As soon as I managed to bring my temperature down to a normal level... the dizziness, nausea, headache etc all went. Maybe the ME fever... made the POTS flare up more due to actually being hotter thou I didnt feel hot to myself?

    Me having a fever also explains why the heater was making me iller thou I was heat craving.

    I wonder when I'll learn that I need to check my temp whenever my symptoms are getting worst to make sure its not that causing them. (I tend to often miss when Ive got a fever affecting me).
  18. Tito

    Tito Senior Member

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    Sorry, I meant fludrocortisone. I'm now trying 1/8 of 1 mg in the morning. I was prescribed hydrocortisone a while ago but after reading a couple of studies I decided against it.
  19. Marlène

    Marlène Senior Member

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    Edegem, Belgium
    Hydrocortisone is a great drug. Too bad so many bad things are written about it. As long as it is well used, it can do wonderful things for your body. I used 20mg in the morning and 10 mg in the afternoon and it saved my adrenals from complete failure. They were exhausted near complete collapse (stage 7, latest stage) and after 8 months they started to function a bit again (stage 5).

    You have to know how you produce 4 times a day in order to know how much hydrocortisone you need exactly and adapt the medication accordingly. Adrenals can never recover from exhaustion if you ask them to work. Why do we ask them to work if we cannot do it ourselves? We need to support them and one day they'll pick up their job, slowly but steadily.

    http://www.chronicfatigue.org/ASI Normal.html
    Here you can find the 7 stages of adrenal exhaustion and - with the help of your doctor - adapt your dose accordingly.
  20. Marlène

    Marlène Senior Member

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    Sometimes we have the feeling it is a fever but is isn't. Since it is a part of the brain that regulates our temperature, sometimes drinking cold water, taking a cold shower and taking a long nap is enough to reset the body temperature. It doesn't always mean you have fever because of inflammation.

    A ME-friend noticed this recently, every time she went out in the sun, she got a fever. It was her brain that was unable to regulate the change of temperature. She went to the beach with the kids, got fever, went back inside to do the water/nap ritual, came back outside, got fever again after a while, went back inside to do the ritual, ...

    Maybe you can try this and see if it helps.

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