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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

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    Support Stockings for POTS

    Right after my appointment while we were still in the city yesterday, we went to the surgical supply place which the specialist had told me about, to have me fitted for medical support stockings.

    After them having to ring my specialist as he didnt send me there with the needed referal, so I had to interupt him in his appointments and get one faxed throu, I was measured up for them after being told it would be a 6 week wait then to get a pair throu.

    It luckily thou, turned out they had one pair my size in stock...fortunately which was my skin colour. Cost for support stockings (which come to mid thighs) and the glue to go with them... $85 dollars :( , that is including a 10% discount for being on a disability pension. The lady there gave me a lesson in getting these on and off in the right manner.

    Unfortunately it turned out that I arent well enough generally ME wise to be able to get the support stockings on myself. I got one leg on and by that time my arms hurt and I was almost gasping for breath (my fitness level right now must be terribly bad) and wiped. I had to get my boyfriend to put the other one on me.

    This is a MASSIVE issue seeing I dont live with my boyfriend and only see him twice a week :( . Horrid feeling.. not good enough to do the things I need to do to help myself.

    I cried a little in the store when I found I couldnt put them on myself. There went my too hopeful idea that I may be able to just use these and be able to just put them on and be able to leave my house alone at times. Looks like just another way Im going to be dependant on someone else, seems I cant get away from that.
    ........

    Today.. I have bad neck issues again. My neck has been playing up on and off but Ive been putting off seeing my physio due to the once a fortnight travel to have to see my ME/CFS specialist... so today.. my neck decided to go jamming up and it is pulling my head to one side and Im only now able to turn my head 20 degree on one side.

    So Ive had to do ringing around... desperately esp since its a Friday and I dont want to be like this with a neck I cant move much and painful all weekend, trying to find someone to take me to my good physio who is a wonder when it comes to my neck, back, hip issues. Cause my boyfriend took me to the specialist appointment yesterday, he's unable to help me out again till next week and unfortunately after several phone calls... I was out of luck.

    Ive fortunately thou she wont take me to my good physio, Ive been able to find someone to take me to a different physio in my country town which thou isnt as good, is still a physio so should be helpful right now.

    Unfortunately its a physio in which Ive stood up twice in the past due to forgetting or confusing apppointments, so I may end up being also changed for 2 more which in past I'd forgot along with possibly having to deal with someone who may be angry at me.
    (Receptionist there was annoyed at me after I messed up the first appointment there, and I never went back after confusing the second appointment with that physio... a short time later). Very nervous about facing that physio again.

    The one who is willing to drive me just down the road.. is also going to help me to put on my support stockings to go to the physio.
    .....................

    Didnt start the trial of raising the drug for sleep last night due to the post exertional headache I developed after cooking myself dinner after a specialist appointment yesterday.

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

    Last night when taking BP and heart rate trying to guage how the support stockings were affecting me (wondering if if the POTS would show up on the "poor mans test" while I was wearing the stockings, I found out I have ANOTHER BP issue I didnt know I had... (talk about that in my next post).
     
  2. taniaaust1

    taniaaust1

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  3. taniaaust1

    taniaaust1

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    Update on Amitriptyline for sleep trial

    Still no luck with this med.

    Doctor had told me to try slowly increasing it. Im impatient to know if its going to help at all or not so skipped trialing a 25mg dose (the 20mg dose no help at all) and went straight for trialing a 30mg dose which turns out not to be helping at all either (still no side effects with this drug).

    The bad thing thou is with this sleep drug trial in past couple of days.. my sleep has now gone back to where it was months ago.

    It had taken me 2 MONTHS to slowly move my able to get to sleep time from 6.30am-9.30am to 1.30am-2.30am on the other drugs and now that is all completely stuffed up due to this new trial

    Last night I tried taking the old drugs after 2 bad nights of not getting to sleep with the new drug trial and didnt get to sleep even on the old drugs at the time I'd previously got to with taking them at midnight, last night didnt get to sleep with them till after 5.30am :( ..

    so my whole sleep time now needs to be slowly moved forward yet again, so it looks like Im going to have to halt the current trial.. start the drugs I know do work for me much later (Temazepam, anti histamine and melatonin) and slowly try to move my sleep time forward again till its at a reasonable time again for me to trial using another drugs again.

    Im sooo so frustrated about it.. When i do go back to the Amitriptyline trial.. I think Im going to ignore what doctor said about slowly trialing it and may just jump from the 30mg to trialing a 50mg dose (the highest dose doctor said I can try). I just want to know if this is going to darn well work for sleep or not... Im sick of this med messing things up more for me.
     
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Tania if endep is going to help you for sleep you should notice it the first night when u get the right dose. For me endep isnt sedating but its cousin deptran/doxepin was much more sedating, good to start at 10mg and if needed work your way upto about 50mg should do the trick if its going to work. Its also cheap like endep. I would still try an alternate it with something else so u avoid tolerence. Good that u know temaze and antihistamines help, a good sleep med to maybe try is imovane/zopiclone. A potential good schedule would be antihistamine night one, deptran night 2 and imovane night 3. If you feel like your body clock is shifting then add melatonin.

    Dont give up, there are plenty of options.

    cheers!!!
     
    taniaaust1 likes this.
  5. taniaaust1

    taniaaust1

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    yeah that is what my specialist said, should work first night.

    I have issues thou with keeping up a good sleep hygiene plan and hence often do things like eg stay too long on computer before bed or continue doing an activity when I should be starting to wind down (with the Aspergers it is sometimes hard for me to just stop doing something..if im not off computer two hours before I try to go to sleep..nothing then helps), eat a big meal right at bedtime due to suddenly finding myself hungry or it not even registering till then that I havent eatten etc.

    I dont expect a med Im trialing to be successful if Ive done something wrong that night with my sleep hygiene. (even the meds which do work for me, dont always work if Ive screwed up my sleep hygiene stuff that night).

    I also if I over do things due to busy day, I swing opposite and end up heading towards hypersomnia or actually hypersominic when I instead of having trouble going to sleep, I go to where I cant stay awake even when doing daily things (can happen at any time). So when a sleep med seems to be working.. I need to trial it a few times to make sure it it isnt cause ive swung a bit into towards the hypersomnia side of things, which as a coincidence has made it appear to work.

    Due to those things listed above.. sometimes it will take me 3-5 nights before I can say for sure if something is really going to work at all for my sleep, if I do everything else right.

    I also want to be aware its helping..even if the med is only helping slightly and dont want to miss that it is helping just a little.. as it then may be okay to take with another sleep med at the same time for the desired effect. (eg I dont take the melatonin by itself as it dont work well enough anymore for me by itself.. I take it with the antihistamine which then makes the antihistamine work stronger for me).

    That ME/CFS specialist I had temporary who is now retired.. I tried doxepin for sleep with him and it didnt help me any. (cant remember now what dose up to he allowed me to trial it but I trialed it until he told me to quit trialing it as he thought it wasnt going to work for me).

    nods.. that is why Im trying so hard to find something else to add in the sleep mix.. (I may of built up tolerance now to the anti histamine dose yet again.. night before last when I took it at midnight, it didnt work. (maybe thou due to the drug trial of other drug making my sleep time go way back too much... or maybe it didnt work as I ate right before bed).

    Last night I took Temtabs at 2.30am and was then asleep by 3.30am, so they worked okay for me still. Tonight I'll try again the anti histamine at normal dose I was taking again but this time a bit later then I had it last time eg 2am.. if its still okay at that dose, it should work as long as Im also did everything else sleepwise right. If not.. I know Ive developed tolerance to it again and needing to up that more again. (so hope that isnt the case).

    I think when I trial the new drug again at the 50mg dose.. if I end up needing to trial it more then one night.. I'll take my other pills for the next few nights before trialing it again so my whole sleep stuff isnt completely screwed up again.

    ummm thanks. I havent trialed imovane/zopiclone. I'll keep it in mind if (which Im thinking it may) the current trial fails.
    ..........................................

    My boyfriend took me out today to buy white cardboard (which from outside will blend in with the house) to cover out the other large window of my bedroom to block out light in the mornings which stops me from being able to sleep good once daylight. The other window has a thick blind which I brought not to long ago but it turned out my windows were different sizes, so the other blind I brought didnt fit the second big window.

    Unfortunately light is still coming in throu the white cardboard (I really thought that would of worked).... so when he's next up (next week) we are now going to try to buy plywood which I can paint, to put over the window.

    The costs of dealing with symptoms seems endless ($10 today just for the white cardboard.. the previous failed blinds for windows also costed)..

    Ive had TWO physio appointments this week (friday and monday) which my health insurance only half covers .. and on top petrol as one was in city as my country local physio to which I could only get a ride to on Friday, didnt fix the issue so I had to also get taken to city to see my good physio on Monday.

    The pain relief cream which the first physio told me to buy for my neck.. turned out to be contraindicated as chemist told me I cant be using it with antihistamine I use for sleep.
    (everything just seems to get more and more complex)

    I need a third session on my neck before physio thinks it will be okay completely again.. Im going to put off that appointment for a while as others I need to focus on and my boyfriend who is my driver.. is going away again on a cruise soon. (I hurt my neck this latest time in bed....laying wrongly on my hand and due to previous issues, it just completely screwed up).
     
  6. taniaaust1

    taniaaust1

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    Update on how the new support stockings for POTS are going

    I was so wiped after boyfriends visit last night that I didnt need to take any sleep meds last night. Its good to have a night off of them.

    Im getting the hang of putting the support stockings on but are only wearing them on the days where I have to go shopping or to an appointment as the difficulty of putting them on and the heat of wearing them, is putting me off of wearing them every day. It is still difficult and I rest between putting them on one leg and doing the other leg.

    The support stockings certainly do help.. there is a catch thou, if it is warm they dont help me at all as heat is one of my POTS triggers and they just make me more warm. Yesterday.. I almost had a full collapse in the supermarket while wearing them.

    That kind of freaked me out as my boyfriend when my legs started to shake (as they do at times right seconds before I completely collapse), thou I'd told him I wasnt all that great, had walked off unknown to me down another isle and when I went to yell to grab me, he was no where to be found.

    Fortunately he'd left the trolley by me and I grabbed that and being only metres from the checkout (I was still in the middle of doing the shopping, thank God I was right at the checkout end when it occurred).. was then able to use that to get across and grab the check out and help myself get to a seat on other side of the checkout.

    I have a most embassing vision of me having to crawl right throu the local supermarket on hands and knees to get to a chair or of me having to be left sitting or laying on floor of supermarket.. and this time, it got to far close to occurring.

    A situation which would well and truely freak me out, as with my Asperger's people coming to my aid and maybe touching me without warning in their concerns for me, would freak me out all the more.

    (Ive collapsed in places before but always have my boyfriend around to keep others at bay except one time when out with my nanna when I had a full collapse).

    The situation of that happening when he was no where in sight to come to my aid, shook me up. My seat I just brought, yesterday wouldnt have helped me either as the POTS hit me so fast and hard, with not much warning at all.. I was beyond the sitting stage to recover and had be laying down flat.. I had to lay on the seat just in front of the checkouts.

    anyway..this has showed me that the POTS stockings, I just arent going to be able to rely on them helping me on warm days. (it wasnt even warm in the supermarket due to air con..but was warm going from car to supermarket and obviously that must of been enough to trigger the incident 15-20mins later thou I was moving around at the time and not even just standing)
     
  7. taniaaust1

    taniaaust1

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    After battle for years with orgs, FINALLY about to get "some" of the support I need

    I just saw the following email to me. This is so great and in several ways makes me relieved but I'll still have issues getting to appointments as as all my specialists are in the city 50km away (so a 100km trip)... my GP is a 30km trip.. At least now I dont have to really really stress out about my house and not being able to do the housework.

    I see it is as Id always thought, the disability services which are a service for the physical disabled (mental health services are separate org)... had sent a psychologist to do an assessement on me rather someone who is familiar with actual physical disability, (he seemed to avoid telling me what he was.. I tried to find out several times during the home visits with him just saying he was just the person sent to do the assessment..

    No wonder I'd got really angry/annoyed at him as I felt like he was trying to counsel me rather just assess me to get me the help I really need. No doubt the previous two knockbacks for help from this org (after I'd already been knocked by by all the mental health orgs), were also done by psychologists assessing me for a physical disability service. ***sighs*** Years to get help as they send psychs our way to assess our health.

    oh well.. I cant wait till the day things with that one change. (wonder if they would of sent a psychologist out if I'd been in a wheelchair, Was I treated differently as my illness is ME? When questioned on it, he did tell me I would of been accepted a lot earlier had I MS. If I'd rather had MS, would they have sent a psych to do the assessment on me?).

    Its going to take me a long time to get over all my frustration of all the fighting Ive had to do just to get my needs met due to just how much Ive been discriminated against due to ME.

    anyway.. I are happy some with this outcome so will focus on that..got to focus on being happy rather then the frustration and anguish that discrimination of others/services have caused me.... thou the transport thing is still a big issue. (If anything happened to my elderly boyfriend, I would not be able to get to medical appointments).
    ..................................

    "Hello Tania,

    I hope that things are going ok for you today.

    I promised that I would tell you today whether the submission for some regular support was successful.

    The application for support was heard by the Resources Allocation Panel last Thursday night and they approved 5 hours domestic (including shopping and/or appointment support) per week. There is a 15 km allowance per week (and if it is not used one week it can be accumulated for the following week but cannot be accumulated beyond 60 kms). This support could start as early as next week if the service agency has appropriate staff immediately available. The service agency will be CLASS Inc which is based in Strathalbyn.

    If you are happy for this support to commence please confirm this by replying to this email or by phoning me on 8552 0646.

    kind regards
    David

    David Felgenhaur
    Psychologist
    Disability Services
    Greater Adelaide Region - Victor Harbor
    Community and Home Care
    Department for Communities and Social Inclusion


    Ph: 0428 101 362 Fax: 8552 0644
    david.felgenhaur@dfc.sa.gov.au

    This e-mail may contain confidential information, which also may be legally privileged. Only the intended recipient(s) may access, use, distribute or copy this e-mail."
     
  8. taniaaust1

    taniaaust1

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    short but intense crash.. strange as i was like having a spiritual experience

    Yesterday I spent a couple of hours in chat and the day before I'd done a little bit of advocacy stuff and these two things started to crash me.. (I probably should of not come to chat at all yesterday and rested up from doing a couple of letters day before as the crash was already there a bit).

    Just after I got offline, I found I suddenly got extremely exhausted.. that kind of exhaustion which one just silently cries as one feels too exhausted to keep living... feel too exhausted. to eat, to think, to move, to do anything at all.

    I ended up sleeping for 18 hrs straight, unable to stay conscious and on waking found myself in some kind of like comatose state... where I found myself like completely disconnected from my brain (like an out of body experience but different).

    I was so free, just what I'd call mind with no like brain thought. No emotions... but like freedom as my mind bounced on images .. things in life were all seen in symbolism with knowing coming in on them.. effortlessless knowing of what it all meant.

    Ive always thought that the ME affects not just my brain but my mind too.. at times I feel like all levels of me are exhausted, even my spiritual level.. but this actually wasnt affected, everything about life and life itself was so so clear.. no fog.... complete clarity.

    Its made me realise that what I saw as my spiritual part eg if im feeling soul tired or soul exhausted.. well my higher whatever one wishes to call it, just isnt really affected at all and the impression I have of soul tiredness is actually just coming from my brain and how the human brain comprehends my soul and how my soul feels.
    The ME is like outside of it, of this other part of me.

    What sucks when I come out of this and got my brain back.. I forgot all I knew and saw during the experience. I wish I had stayed like that and not had to come back to this body and this brain which is in it.. (where I wasnt like sleeping nor was I living in my body). It was so nice to not need or want anything or feel anything (and not mind at all the knowing my body was just left in bed and had been there for a long time, I didnt mind at all if that body was dying or had died).. I just existed as a presence where bad health could never affect as it didnt have a body or brain.

    Maybe if the ME ever kills this body and brain, I wont mind at all. (the comatose like state was like familiar to me but I cant remember when Ive had it before.. maybe I was existing like that when I was very very sick in the past when I used to not wake up for days).

    Just got up to post this.. going back to bed.. shouldnt be up. Maybe I'll be able to be awake more then 6 hrs tomorrow.
     
  9. taniaaust1

    taniaaust1

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    Given Fludrocortisone to trial for POTS

    Thursday had another appointment with CFS specialist Dr Del Fante (I still was going fortnightly). Having to hold off of his next visit along with 3 other medical appointments with specialists (physio, psych and a GP appointment to get a new referal for my psych), due to my boyfriend going on a cruise so I wont have anyone to get me to appointments.

    Things I saw him about this visit

    - updated him on how the amitripyline is going... well that sleep drug trial just isnt happening right now as Ive crashed so currently gone into the hypersomina (sleeping up to 18hrs a day) rather then the insomina. Will continue playing around with that drug again once Im out of the hypersomnia.

    - updated him on the support stockings .. they partly work but I still collapse. So he's now prescribed Fludrocortisone 100mcg tablets for the POTS. Im to take a quarter of a tabet for the first week and then increase to half a tablet and see how that goes.

    - Due to all the recent B2 convo on this forum, I also asked him about B2 testing. His response was testing the various B vitamins isnt very worth doing for us as the tests arent very accurate at all.

    - He also got me to go and have a blood test (of my electrolites?? the blood person said its a test to see how ones kidneys are).

    I was okay (if one can call it that, I ended up hanging from the front desk as POTS was so bad and I was going to end up on the floor) that day of appointment, but next day (is that today.. i dont even know what day Im in) Ive crashed more. I hadnt recovered from the crash Ive been going throu all week so its even worst now.....from going to the specialists appointment this time.

    Today.. Ive been nauseus all day and tonight even worst, so close to vomiting starting up. Frontal headache (so have been on pain killers) and unfortunately cant find my anti-nausea pills (I think I may of run out), so feeling like I just want someone to shoot me. ME is flaring...

    I wont start testing this new drug until things settle down.

    I didnt tell him about my orthostatic hypertension in fear that he would then see my POTS as too complex and possibly be worried to try the med on me which he's suggested.. its contraindicated for hypertension but I know orthostatic hypertension can be caused by low blood volume in us.
    Once I start it, I'll monitor it myself and keep a careful eye on my BP in case it worsens the hypertension side of things.
     
  10. taniaaust1

    taniaaust1

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    Accidental OD and A temporary Home Support Worker's first visit

    Several things have happened in the past week.

    Firstly I did something Ive always been worried about.. and accidently ODed on Amitriptyline I was trialing which resulted in me having to be ambulanced to hospital and put on a IV drip.. http://forums.phoenixrising.me/showthread.php?17357-Oh-shit-I-just-accidently-ODed-on-my-drugs.

    Secondly. I had my first home visit with a worker from CLASS (A home support org). They are still looking thou to find someone for me, who can come in twice a week.. 2.5hrs at a time.

    In the meantime Ive been provided with someone who can come in only once a week for up to 5hrs. She's brand new, second day on the job and Im only her second client.

    Unfortunately I couldnt last a support worker at my place for the 5 hrs and had to send her off early (after 3.5-4hrs), I still had things I needed doing but by this point I had to go to bed and have a good rest, which for me means several hours at least of complete quiet so I had to ask her to leave.

    I think she was bit disappointed (thou she managed to hide it well) as its a 45min drive for her just to get to my place. She was really lovely, really watching out for me and jumping in whenever she saw I was running into trouble eg I walked away from the supermarket checkout before they gave me the $30 phone recharge voucher I'd paid for
    ... she actually saved me a couple of other times too during the short time we were out.

    So Im hoping she gets other jobs given to her in my town, so maybe then she will be able to tend to my needs and my home for a shorter time periods.
     
  11. taniaaust1

    taniaaust1

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    Update

    This morning Ive upped the dose of Florinef as specialist told me to do if I had no issues after a week of a quarter of a pill, so now on half a pill of .1mg of it.

    The new carer I had... didnt show up the second time she was expected and the org where she is from when I rang to ask why, didnt know. They ended up sending me in an emergency one last week. No idea what is going to happen this week if someone is going to show up or not

    Im right now very nervous as David Felgenhaur (a psychologist and assessment person..sighs..why do we always end up having to deal with psychs) from Disability Services (Greater Adelaide Region - Victor Harbor Community and Home Care) is coming again at 2pm for a home visit to discuss my complaint in... How can I get to any of my specialists appointment as thou given a carer and 5 hrs per week, they imposed a 15km travel limit which wont get me anywhere except to shopping.

    The support org which is helping me that the Disability Service funds.. dont understand why that 15km travel limit was imposed on me either esp when its meant to be helping me get to my medical appointments.

    The Disability Services has been given a list of all my specialists... so it isnt like they dont know I have a lot of appointments which would be in Adelaide to get to. 15km dont even cover me being able to get to my GP.

    ***deep breathing as so sick of having to deal with psychs who have no idea of ME and its physical issues and the fact I do have many specialists I need to see.. How hard is that one to understand I see many specialists, when they have phone numbers and names of them all!!! (hopefully I dont end up getting upset or basically yelling at him again.. Ive truely had enough of bullshit).

    Im bothered by that I was not thinking and forgot to arrange to have someone with me when he comes (and now cant get someone I could of had come to help back me up as if having all the names and phone numbers of my specialists hasnt been enough!!).

    My boyfriends away on cruise still. :( So im going to be trying to deal with the guy who obviously previously hasnt listened to us well at all.... very very nervous seeing he's ignored already what 2 of us said and hasnt looked into it which is his job to do.

    Im also embarrassed that I will be having this male in my own home, who isnt even a DOCTOR (being just a psych) who I are going to have to tell all the reasons why I need to go to so many specialists. Im feeling humiliated already about having to tell this psych guy to his face that my bowel is bleeding and like not working to the point Im having to manually deal with it myself.. and a so lot of other things.

    This whole thing isnt fair and right!!! I shouldnt be put into a situation in which I feel like Im going to have to explain all my issues in depth so he FINALLY listens to me and realises i need to be seeing doctors/specaistists and my health is suffering as i cant get to appointments while boyfriend is away.

    I hope the psych will be as embarrassed as this whole thing is going to make me (added to the fact Im going to feel sooo uncomfortable giving such intimate details while having him in my home with me alone). Ive had many bad experiences with males and feel extremely vulerable in this situation.. maybe i should be cancelling this home visit until I can have a back up person with me? Im seriously wondering right now how on earth Im going to be able to go throu with this.. Im right now feeling like I cant.
     
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    hi tania :)
     
  13. taniaaust1

    taniaaust1

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    hi heapsreal :) **waving back***
    ........

    Update.

    Having to deal with a male I dont even trust and of the thought of being home alone with him while trying to get him to listen .. I freaked out too much and ended up right at the last minute (like an hour before the guy was due), cancelling that home visit.

    I contacted the disability org and have now requested a female to be dealing with my case. He has wrote me an email and was nice about it all, completely understood why I may want a female.

    In his email to me he explained to me it isnt the fact that he isnt believing me but that the government disability organisation for this state.... dont help with transport for getting to medical appointments.

    "Disability Services" (previously called "DisabilitySA) , funds other carer orgs including the one Im in and funds me, which his org has put they cant take me more then 15km.

    Thing is.. the org Disability Services is funding for my case, its clients ARE getting taken to appointments in the city (Ive had people in the org tell me that).. So the whole situation ..still dont make no sense to me. Why arent I? (Ive sent him another email..hopefully someone will end up explaining it to me).

    So Im now awaiting to for someone new to contact me from Disability Services and work with me further to fix the gaps still in my care needs.

    (I hate all the whole goverment system.. it so screws you around.. makes it near impossible to find the info you need to know).

    *** While i was writing this.. the carer org who is doing my care just phoned and told me why the one allocated to me and was meant to turn up, was a no show last week. She apparently cut her hand.

    So Im now waiting to see if she'll be the one this week or if anyone is available at all to come this week to give me any support.
     
  14. taniaaust1

    taniaaust1

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    update.. the home support/carer showed up :) .

    Unfortunately she got rang by the agency to come and do the job only just before hand and she's put air freshener in her car so only took it out hours before she arrived.

    So I had my head almost hanging out of her car window the whole 5mins down to the shops and library ..and by the time we got there.. my brain had been affected by the chemical.

    My brain was so not working due to the chemical exposure I really struggled to the point I completely screwed up at the library and had to be helped (I put my books onto someone elses library card!!! and didnt even notice i'd done that).

    I had quite a "feeling energetic" day .. so struggled to keep myself from doing too much (enforcing myself not to as I dont want to crash like I did after last time she came).

    An hour after she left it hit me for a couple of hours (suddenly extremely exhausted so layed down for a couple of hours) and then the exhaustion left again. (it was the only fatigue ive felt today).

    Tonight.. I should be offline cause otherwise I'll have no chance of getting to sleep for more hours (2am now) but Im currently in too much pain to sleep so using computer to distact myself from the pain. Ive taken my prescription pain killers tonight but they havent worked so Im going to go and try to sleep in a hot bath as I think that may be the only way I'll get any sleep tonight.
    (my insomina drugs have no chance of working if Im in pain)

    **fingers crossed that I wont have post exertional SYMPTOMS (it may not be fatigue) tomorrow after being taken to shops today** Kind of worried as my mother is doing one of her rare visits to me tomorrow.. so I wont be able to rest to the degree as I maybe should tomorrow.

    The carer noticed and correctly commented I was much better today then when she was here last. I dont know if its the increase of the Florinef or the fact it wasnt as warm today. (we did have to rush home and grab my pill killers thou at one point)
     
  15. taniaaust1

    taniaaust1

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    Update

    My boyfriend is back from his cruise to Amercia and brought me back a pressie. He managed to sneak throu customs 4 bottles of Melatonin for me (he would of brought back more but was worried he may get caught). I cant believe how crazily cheap he got it from there.. .. one bottle at $5.20 .. its $40-53 dollars for that 1 bottle in some chemists here. So those 4 bottles were like a $180 saving if I'd brought from the chemist.

    My boyfriend was amazed at how much weller I looked, then I did before he went away a month back (having home support carer is making a difference). I felt happy that 2 different people have told me Im looking better in the past 2 weeks.

    My sleep is going MUCH BETTER http://forums.phoenixrising.me/showthread.php?17827-My-sleep-is-much-improved

    The severe bowel issues (to which I almost went down to the hospital at one point due to them) due to the Amitriptyline trial I was on.... have come almost good (thou my bowel still isnt to the point it was before that trial and Im still going to speak to the specialist about it).

    This week is going to be a real test on how Im currently doing, as so much more has ended up in this week then what the limit I usually impose so I knew things were going to be over doing it.

    I can usually only be with someone twice per week and have to take at least one day rest between things from seeing anyone... but this week have ended up with boyfriend visting Monday, my daughter showed up unexpectly this morning (she had a doctors appointment but couldnt get home so had to walk to my place), then my carer was coming this afternoon which made me want to cancel the home support person as due to yesterday with boyfriend.. I knew I wouldnt go well today esp after daughters unexpected visit.

    (didnt cancel it thou as I thought well if I cant cope now with her coming..how would I cope with carer if I relapse again.. so thought I'd try to find a way to get throu it and opportunity for her to learn how to give me support when Im not good enough to give her many instructions).

    Daughter had just left before home support carer arrived and I started crashing from daughters 1.5 hrs vist about half an hour later. By the time carer got here at 2pm.. I was back in bed.

    I had to get up to tell her what I wanted done and to do a shopping list, so she could go out and do my shopping for me, while I stayed in bed. I was in such a state that I couldnt even walk two rooms without loosing my balance and having to grab onto things due to going to fall with my head feeling weird/pressure. I was having trouble talking to her as brain was struggling to put sentences together.

    I gave her my bank card to get my shopping for me but then couldnt remember my pin number so had to ring my boyfriend for help, to which he then reminded me I'd taken money out yesterday when I'd been at shops with him getting milk, so had my purse full of money to give her (thou its been 9 hrs I still cant remember my pin thou Ive had this pin for years.. usually with these mind lapses the info comes back but it hasnt today).

    My boyfriend freaked out that I was about to give my bank card and pin to a someone I've only met twice... I need to get throu to him, that I need to do that at times cause how else can I sometimes otherwise get the help I need, esp at the times when Im not well enough for someone to take me to the shops to do weekly shopping. She hasnt all day to wait around for me to recover when Im like that and crashing.

    One great thing about this carer is she's very attentive and noticed every time I almost ended up on the floor. She also seems to be very aware of when Im ill without me saying so. She ended getting me to sit on the floor while I did my shopping list while looking throu the fridge which was a good idea as it beats falling. Ive also explained now to her about the noise intollerence, something I dont nowdays usually get but I got it bad today when I crashed (she painfully killed my head when she first arrived cause she dropped her keys onto the cupboard).

    Anyway.. that is the second time in two weeks in which Ive crashed the day after shopping from just a couple of hours of talking with someone. Same kind of strange crash where I suddenly need to go to bed and sleep (the only difference with the one today to the other day is the added noise intollerance and this time my eyes didnt start watering). She said I slept 1.5hrs .. I then wake up completely fine again. Its weird... sudden postexertional severe crashes which go away after 1-1.5hrs sleep.

    Im a bit worried about how Im going to make it thru the rest of the week.. as I have appointments in the city both Thursday (CFS specialist) and Fri (Physio.. if I can find a way to get there..otherwise its going to be another cancelled appointment, this one already has been delayed by 4 weeks)

    then my mother is going to take me to see my daughter and new grandson I havent seen yet on (Sat) ..im soo happy my mother has talked my daughter in allowing to see them.

    All this is all about 3 times more then I can usually do without bringing in symptoms... so who knows how Im going to go... as long as I dont cause a relapse.. I should be fine (I can handle short crashes).
     
    heapsreal likes this.
  16. taniaaust1

    taniaaust1

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    What a week!

    Neighbour had a go at me over my yard
    http://forums.phoenixrising.me/inde...-just-had-a-go-at-me-again.17537/#post-269317

    I had a terrrible social workers visit
    http://forums.phoenixrising.me/index.php?threads/upset-after-social-workers-visit.17594/

    I had the builder here, fixing rotted steps leading up to the house on two full days (so past two months my steps have been collapsing) ..so was woken up early due to that and having to put up with hammering and drilling on those days.
    .............

    Medication wise.. made another change this week and have gone back to doing B12 hydroxy injections twice weekly which I used to have in the past. Im going to do a 3 injection trial of it, as my brain may of gone a little backwards, due to not having these for so long. (the only thing it helped in the past was my brain, no more improvement with a couple of years of taking them).

    B12 injections helped my brain a lot in the past., the positive effects kicked in with the second or third injection previously, so Im expecting that if Im needing it right now, just a trial of 3 will tell me if that is what Im currently needing.. Im staying on the molybedum as that is currently helping my brain some too (and I start to go backwards when I stop that).

    I had B12 injection today and now are feeling a little unwell (not tired just feeling generally unwell). I dont know if its a 'start up" from the B12 injection (I got some start up symptoms years back when i first started them but on that occassion is I broke out in big facial sores like someone on acid) or maybe if Ive done too much today, thou i havent done much at all but did have someone over.

    Im also back having to take fish oil and Glucosamine. I had a very good day the other day, so went to do gardening and was trying to get weeds with a shovel growing out of cracks in my driveway concrete. After 10-15 mins of that.. I ended up with severe back pain. Unfortunately thou its settled down days later, its still there.

    I was at my CFS specialist in the past week and my latest test results..including my previously low calicum one which was redone... have came back normal. (so who knows what the cause of that low calicum on last test results was). So that at least is good news.
    He also said that he isnt going to put me onto Statins for my high cholestrol so that is good too. (I hated the idea of more pills).
     
  17. taniaaust1

    taniaaust1

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    Not Happy!! The Bad Bowel issues continue

    I went to tears this morning due to tummy pains, due to the ongoing constipation issue Ive had since that failed amtriplyine trial for sleep. My bowel never came okay again after that... Im sure that med further damaged me.

    Due to the fact I was so upset about it.. as the constipation is not only very uncomfortable and demoralising with having to remove own faeces due to my fibre supplements and also the coloxyl (my specialists last suggestion) not working so I cant poop at all.. its also destroying my sex l ife. So I ended up getting an emergency appointment with my CFS specialist today.

    He's refered me on to a private bowel specialist who also has a speciality in IBS-C (IBS of the constipation variety). Im choosing to go private as I couldnt stand the issue of waiting months and months (maybe up to 9mths or more) to see a public specialist.

    In the meantime.. He told me to try Movicol (unfortunately not on the cheap list for disability pensioners thou.. only on gov cheap med list if one has cancer), but when I looked at the ingredients at Pharmacy I was sure it had an ingredient in it, I know I react badly too (artifical sweetener called potasium acesulfame). The Pharmacist ended up thou convincing I must be mistaken as she kept saying it wasnt an artifical sweetener.

    I took it as soon as I got home and guess what!! Within minutes I was suffering side effects from it.. head spinning in a way which is different from my POTS (right now Im trembling due to it). So I just looked it up online and sure enough the pharmacist was wrong :( .. the thing is an artifical sweetener and one Ive reacted to badly in the past.

    I hate this.. not just head spins it is giving me.. but I also feel like disconnected from my body and like Ive been binge drinking or on illegal drugs but having a horrible drug side effect. I feel very mentally dazed.

    Im now going to have to ring the doctor again tomorrow and tell him I cant take this product either.

    To top this off.. yesterday I tried to change the kind of Coloxyl I was trying. I was taking Coloxyl with senna and seeing that was only helping a bit.. I decided to try the other one which had double the amount of Docusate sodium in it. It turned out after 15-20 mins I got a dizzy reaction from that other one yesterday (thou no side effects from the other one). Interestingly when I then looked at the label to see what was different, the new one I brought had gluten while the other one was gluten free.

    Im confused thou as Doscusate sodium, one of its most common side effects is also dizziness.. Im left not knowing if I reacted to just having double the amount of that.. or if it proves one thing Ive always wondered.. I have issues with gluten?
    .............

    Ive also been back on B12 injections (2 per week) but unlike the past... they arent improving my memory or doing anything good for me. No effect at all from them nowdays at all.
     
  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Tania, sorry u feel crappy.
    Just thinking of a few things u could try, high dose vit c eg over 10grams, keep popping 500-1000mg until u go.
    Also try snacking on nuts, sultanas and sipping on water all the time.
    Was it you we spoke about maxolon, as it can increase GI muscles and gastric emptying, something to ask your doc about.
    I dont think your going to notice anything from b12 injections until u get your current issues sorted.
    There use to be a drink that they gave people in hospital for severe constipation, i think was called a shwa's cocktail, just googled it and yes thats what its called http://allnurses.com/general-nursing-discussion/constipation-19458-page2.html.

    You could always read about simon wessely, im sure that would give u the s--ts, lol.

    good luck
     
    taniaaust1 likes this.
  19. taniaaust1

    taniaaust1

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    lol I wish... at least then he'd be good for something.

    That's a good point and shouldnt I should of considered but hadnt. Thanks for making me think more about things.

    That is a good idea but probably something which wont work for me but I may end up trying it for that anyway. When Ive taken high dose vit C in the past (for me that's two lots of 4g per day is all my body used to be able to handle).. it used to start giving me sharp stomach pains just after having the C but didnt loosen things all that much. Maybe my tummy would handle it better then in the past?

    I have intollerance to peanuts and are intollerant to cashews at times but can eat other nuts and do tend to eat already a lot of those nuts. With nuts.. if anything, they seem to actually constipate me and they dont digest either and come out undigested in pieces.

    Fruit (no matter what kind I ate even prunes) when I used to be able to eat it, didnt seem to loosen things (thou bananas used to constipate me). I cant eat things like saltanas anymore due to my high insulin issue. And with water.. I drink at least 3 Litres per day.. often more.. due to POTS, I drink it constantly sipping it all the time already due to that issue.

    yeah.. we did speak about that and that is a drug Im already on at times.. I only take it when Im severely nauseus as it makes me even sicker for 30-40mins to the point where Im gagging and nearly throwing up due to the drug (before the side effects settle down). I'd hate to be going throu that daily but it is worth it if it stops me from being very nausous all day after Ive over done things.

    It also is the highest drug cause of Tardive dyskinesia which can be permanent and irreversible and I'd worry Im even more at risk seeing I already have some major neuro issues eg tremors etc etc already at times with the ME (I get parkisons like symptoms at times and this drug is said to not be used in parkisons patients as it is a dopamine agonistic drug...
    my father also has schizophrenia.. which is an issue caused by low dopamine and one in which there is meant to be a 25% chance I'll inherit that condition.. so dopamine agnoistic drugs worry me as what if they increases my chances of that?).
    Im really really hoping there is a drug which dont carry those risks which also helps peristalsis...

    "For intractable clog-ups, we always go with a Shaw's Cocktail (does anyone know who "Shaw" was??!!)
    - 1-2 tablespoon Senekot granules
    - 1-2 tablespoon Agarol (MOM)
    - 2 crushed durolax tablets
    dissolved in warm water & mixed with melted icecream.
    Tastes like a chocolate thickshake, but GUARANTEED to work within 24 hours!! "

    Umm that one if anything is going to work..sounds like it would work (not sure how something like that would be long term thou as senekot I know shouldnt be taken long term as it can cause bowel to become even weaker. I dont know about the other things). Ive tried Senekot already at max dose but that didnt help.. but maybe combined like that it would.

    Senekot granules have apparently been discontinued in Australia (thou of cause we can still buy laxatives with senna in them in other forms). Interestingly Senekot pills contains also Docusate sodium (stool softener) which isnt meant to be taken with mineral oil.. which is what Agarol is.. (The senekot granules didnt have Docusate sodium in them). So unless it is still available overseas.. this above combo couldnt be done.

    Durolax. looked it up on wiki.. its called Bisacodyl.. sounds like it may be the kind of drug Im needing "Bisacodyl (INN) is a stimulant laxative drug that works directly on the large colon to produce a bowel movement. It is typically prescribed for relief of constipation and for the management of neurogenic bowel dysfunction as well as part of bowel preparation before medical examinations, such as for a colonoscopy.[ "

    Does anyone know if that is available over the pharmacy counter without a prescription in Australia?

    Agarol is apparently a form of liquid paraffin (so lubricates), I used to have to use liquid paraffin for my daughters constipation and I remember it didnt used to have to have a prescription for that (thou was expensive)
    (My daughter had spinal issues with nerve damage and lack of peristalis..she used to be on that, senna granules and also a lactolose syrup to soften things, for this issue).

    Im concerned that I mayI end up having to be on same kind of bowel program... my daughgter unfortunally used to be at all times on maximum doses of 3-4 different drugs for her constipation and still often end up at the hospital having glycerine and olive oil enemas from a bag.

    Thanks. Its nice to have a few more ideas to what to try if my doctor ends up stuck in what he thinks I should do and that durolax may be something I could try.

    I also have more ideas too..but hate taking meds etc without being under doctors advice.. if Im treating myself at home without their imput, they always end up then trivalising the degree of my issues (thiat has happened so much).. ..hence I want to make sure that dont happen to me again.
     
  20. taniaaust1

    taniaaust1

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    This situation is such crap.. I still havent been able to go to the loo and rang specialist asking what do I do..only to have him say "we'll sort it out in your next appointment". My next appointment is TWO WEEKS AWAY!!! If I didnt crap in that long (which I probably wont unless I remove it myself), I'd end up in hospital so it looks like once again, I will have to deal with my health situation all myself. My bowel is so so uncomfortable (almost crying again over it).

    I just wish I could hand my health over to a doctor for once to give myself a break.... I hate how I constantly are forced to be my own doctor. Im now waiting for my carer to arrive so I can go to the chemist.. and Im going to buy up all their constipation things I can find and take EVERYTHING TOGETHER.. at this point Im so upset about the situation that i dont even at this point care if I OD while trying to clear myself out and fix the discomfort Im in. I just want this SHIT issue gone could say out and want to be able to feel good again.

    Why is our medical profession seem to have so little care of how horrid some of these issues we get are? Im past the point now (unless something else at chemist helps.. I so so hope it does)... where Im NOT mentally dealing well with going untreated with this and now refuse to manually remove things myself which only gives me bowel bleeding.. Im to the point where I will leave myself to suffer and end up in hospital rather then having to do that again.
     

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