Tania's journal of drug treatments and other ME things

This illness is so deceptive at times as one never knows what is going to happen.

Christmas I thought was going to be terrible as I had a crazy number of appointments in the week leading up to it and wondering how I was going to survive it. (I think I had 5 appointments) with 2 of them in the city which is quite a distance for me. I stayed in the city over night so I could get to the next one early next morning to try to avoid issues.

Anyway amazingly I survived all those appointments and xmas, usually I can only handle medical appointments twice a week and cant do anything more except that as I usually have to do preemptive resting leading up to appointments and also the whole day after one to come throu outtings ok.

I did get a bit tired but I wouldnt call it ME/CFS exhaustion and I did have muscle soreness after xmas day, woke up slightly sore next morning which just got worst all throu the next day but even that I wouldnt call ME/CFS symptom as my body is completely unused to exercise and it got more exercise then normal xmas day and the day before.

This is so so amazing, I still cant believe my normal ME symptoms didnt all go kicking in. No dizziness, head pressure or headaches and nausea is happening.

I actually seem to be currently on the improve again. Heapsreal a few weeks back suggested for me to try Doxylamine Succinate (an antihistamine with the side effect of helping sleep) for my sleep and since I started taking that (at the lowest dosage), I seem to be over all improving. It certainly does help my sleep issue too, not only that, some kind of general health affect seems to be also lasting even when it has worn off. (I assume it must be helping some kind of inflammation going on in my body). Unfortunately that is only a drug to be taken very short term (warning on packet says 2 weeks).

The melatonin Im also on only helps my sleep by 2-3 hrs eg instead of getting to sleep between 6.30-9.30am, with the melatonin I get to sleep between 3.30-6.30am, so the Doxylamine Succinate really has improved on that and with both, Ive been able to get to sleep at 12.30-1.30am much of the time

POTS/BP specialist

I had appointment with the pathology professor who specialises in POTS and BP issues but things didnt go as planned. She tested me and just for once no issue showed up, my heart rate was fine and my BP issue didnt come in. It's frustrating that these things happen and completely disable me at times but didnt show up on this one occassion when tested by one who deals in them, (when they show up quite often at home and have previously when Im monitored).

She didnt tilt table test (The main hospital in the city - The Royal Adelaide Hospital has no tilt table!!, apparently thou they used to). Apparently thou the repat hospital and the Queen Elizabeth?? hospital thou do have tilt table so she's suggested I get a referal from a GP to go to be tested there so I will follow up on that at some point.

The way she tested was have me lay quietly for 10 mins after which she took my BP and pulse 3 times making sure they were stable, then just had me stand up and took my BP and pulse over 10 mins. (so I think that should of been as good as tilt table and I know would of usually showed up issues with me). This time thou, no dizziness happened at all.

I had drank 3 litres (12 cups) of water thou in the 2-3 hrs before being tested so are wondering if that stopped it occurring??? (does anyone here know if drinking heaps of fluids not only stop POTS symptoms but also can stop it showing up on testing????).

She went on to advise me on all the normal POTS stuff as she aknowledged that one can have it and not have it show up on a test. It was all basically thou what I already do to try to prevent its symptoms.

She wasnt so good thou with the BP issues I have (orthostatic hypertension) and said that peoples BP go up on standing anyway (**sighs, it isnt normal for BP to go up at times to 170 while standing** so I cant understand why she said that and played down what I said about my BP). I took in Dr David Bells stuff which mentions orthostatic hypertension in ME/CFS, she did read it but then said she couldnt see how that could happen and give one dizziness.

She then tested me for a condition known as pure autonomic failure which I know I dont have as my symptoms go opposite to that (in pure autonomic failure the pulse skyrockets when laying, not when standing and its due to the pressure reflexes being under reactive where as mine are being over reactive.. so obviously she was very confused by my symptom ).

She said that even if the orthostatic hypertension had showed up during that appointment, that I wouldnt be able to be treated by medications for it anyway, due to my BP going low at night when Im laying. (Im confused by her statement of that as I know others here are having that treated).
* If anyone who has orthostatic hypertension but with low BP when laying and is being treated for the hypertension still .. can you please post and tell me what you are taking for it and how much. Thanks

There was one thing she has told me which I dont already do, is to raise my bed head up on brinks. She talked about deconditioning causing POTS and how astronaunts end up getting issues and that raising bed head helps stop this. At this point I would be able to handle raising the head of my bed so will be doing this.

Previously when I was sicker, there is no way I would of been able to do that, (at my worst, I had the leg end of my bed raised to help blood get to my head as at one point I was even dizzy when laying down and hanging my head below my body level helped a bit). I used to have to sleep head hanging off of my bed.

All sounds very promising Tania. Glad your sleeping better, most me/cfs experts believe treating sleep dysfunction is very important and can help with overall symptoms, although not a cure. As for doxylamine not being used for more then 2 weeks, i think this is mainly to do with tolerence to this med, not neccessarily a health type issue. Through trial and error u can work out a regime that can help u to get good sleep by alternating when u use this med and or alternate it with something else.

Drinking 3 litres of water within a couple of hours would definately have stabilized your pulse and bp issues, but maybe doing this when feeling really crappy might help you?? but drink normally when u go for another lot of Oi/POTS testing.

cheers!!!

Thanks for your thoughts on it heapsreal. ahh well lesson learnt on what not to do right before POTS testing. I did that to make sure I could get there okay. My normal for drinking when I need to be active or on my feet eg just going for an appointment I call being active, is to drink a heap just to make sure I can get there okay. Guess I will have to not do that next time.

Delusional

Some think ME/CFS people are delusion in thinking we are actually ill... Im going to say its the complete opposite as so often we go and start deluding ourselves we are getting better when we probably arent, its just so nice to think that one is getting better!

I had an extremely good week with not even POTS seeming to kick in (thou I was drinking a lot), this was very amazing to me and hence started to think I was on the mend again, but this afternoon, I was showed Im not making like a miraculous recovery even if I want to think I are at times, just cause of a small good patch.

Today I got up at a decent time, felt actually motivated due to feeling well and having some energy so got stuck into 45mins of housecleaning which is rare for me to do first thing in morning. Had to then have a rest time.. then later on got taken out for a small grocery shopping... another rest time as by then some muscle pain kicked in in one of my legs (this stopped after being off my feet for a couple of hours).. then had my sister over for dinner......

and BAM those familiar ME symptoms started up again right in the middle while I was doing an easy dinner. (My house was hot by that time so possibly the heat set it off rather then todays activity.. so I dont really know todays trigger).

Im now feeling so terribly sick to the point I gagged a couple of times, not just slightly nauseaus on and off but just feeling so terrible unwell as a whole body thing. My head has been throbbing for past 5-6 hrs so Ive had to take pain killers.

Note.. why on earth do they call this chronic FATIGUE syndrome. I actually dont feel any fatigue at all today.. just very ill. I wish I could get that throu to my doctors.. that fatigue for me isnt at all one of my main symptoms and I often dont even have it when the other post excertional symptoms are kicking me around. Even my CFS specialists dont seem to understand that fatigue isnt as such what truely bothers me... it probably is my 8th worst symptom so quite down on my symptom list when it does occur.

Now that Ive had my vent Im going to go to bed where I should be right now... not due to that Im tired or fatigued.. but due to that Im feeling very ill and my head still hurts.

Hi Tania,

Fatigue is a crap name, i think many are low in energy but enough to get up and do something, its the recovery of doing this activity thats getting us and yes makes us feel sick not fatigued, maybe sick lethargic and achey. Then some people are in a constant state of PEM. Catabolic processes are high in cfs/me and i think are what give us the little energy we might have and the anabolic processes are what help us to recover and in a normal person if activity keeps going this makes us strong by helping us to adapt, like a training effect. We dont seem to have this, this where i think our hpa axis and hormonal response lets us down and its a viscious cirlce where infections etc cause poor sleep which then effects or hormonal system which then effects our recovery etc. Thats why i think adrenal fatigue is apart of what is wrong with us but its not the total cause but maybe a symptom from the underlying cause???

cheers!!!

Dr Graham

Thou he is nice, I am fed up with my old CFS specialist (Dr Graham) due having the same symptoms for so so long which very little treatment has been tried on. eg severe sleep issues for years and only have been put onto Melatonin which was only doing very little.. possibly cause he hasnt got insurance as he's actually retired so cant do prescribing. Im really needing treatment for my symptoms and need more specialist treatment action. Him taking 4 years to listen to me on that I get POTS, is far too long!! Taking 4 years before deciding to allow me to try something for the severe insomina (melatonin) was far too long. So little progress in trying to deal with my condition.

I need a specialist who listens and tries to help me based on what know about my condition and are experiencing. I do not need to be hearing about a 50km bike ride my specialist has done that week and all the details of it when Im unable to do any exercise and being left with all my symptoms.

In a way.. I wish I was a meaner person and could do him an email and tell him its actually cruel to be putting his CFS patients throu this when we sooo wish we could be doing the same and many of us were very active before getting ME. (What he is doing is no different to if someone was on a diet for health reasons and their doctor telling them IN DEPTH about a party they went to and all the yummy sweets and chocolates they had at the party).

Yes bike riding is this doctors pride and joy but is it fair for ME patients to be listening about it each appointment and so wishing they could be exercising again and doing similar? Right now Im feeling bitter about it all... I wish I was well and believe if I had been treated more for the ME maybe I wouldnt be where I to the point I are, right now.

Its upsetting knowing that others at this site have been really helped and have specialists trying hard to help them with their symptoms while I just feel like I was basically left to deal alone with mine, just offered emotional support (and was willing to write letters) while I was left suffering and struggling (going hungry at times due to being too ill to cook meals, going 2 days at times or longer without sleep and then getting mentally unstable due to the severity of my sleep issues, not being able to leave house alone due to POTS which was ignored), lack of treatment just dont cut it with me no more.

Shouldnt he have been trying to get home help for me or doing more in regards to treating me? I was put in a situation where my GP (Dr Michealmore) wanted him to be doing all the treatment (while saying he didnt want to be treating me) while he was expecting my GP to be helping me with things, who kept on constantly saying "go and see your specialist" and even "well you arent disabled". What a joke!.

I do have some things to be greatful for to this CFS specialist as it was him who helped me get the disability pension I needed, it was him who got the tests done to show I had a MTHFR polymorphism which explains why my daughter was born disabled but other then that in 4 years.

He also did not too long ago suggest hair analyses which did then show up some issues and those supplements then I started from those results (deficiency of molybdenum) have helped my brain at least.

I had high copper showing on hair test and small amount of other metals so started selenium which has helped me too. My hair is feeling nice once again which it hasnt been for years and my nails growing well again unless it is the zinc from the "molyzinc" (molybdenum and zinc). Thing is I'd asked him if I could have hair analyses done right back when i first started to see him years ago so the improvements Im getting now from those supplements I could of been having years ago.. it makes me feel angry that he didnt listen to me and my requests.

I have nothing else from seeing him but a load of disappointment that he didnt support me enough with treatments (only supplements at times). There is so much in my condition he missed and if I'd had a good CFS doctor maybe I'd be being treated better and back to working at least part time.

So when I think of him its really a bitter/sweet/angry at him feeling. I was so fed up with how little had been trialed with me on my symptoms that my boyfriend had to almost drag me to see him on my last appointment with him. (suddenly found out Dr Graham now knew about POTS as he'd just heard it on the radio the day before grrrr it all very annoys me)

**Note Dr Graham isnt taking on any new patients but if anyone does some
how get in with him. Note, he's only very good for doing paperwork support of the illness or emotional support.

So anyway.. now its Dr Buttfield (CFS specialist) instead for the time being as a temporary thing until I can see Dr Del Fante (CFS specialist and researcher) in mid Feb. I'll share how my first appointment with him went next post.

My first appointment with Dr Buttfield

Briefing on Dr Buttfield

Dr Buttfield is a CFS specialist who has been around for a long time. He's made an offer to the SA ME/CFS society to help train any doctors on CFS who are interested who they send his way. He's a doctor who dont believe in supplements but rather gives prescription drugs for symptoms (so completely the opposite to my last CFS specialist who ONLY went the supplement route and didnt do anything to treat symptoms).

Dr Buttfield is not taking on new patients as he's retiring, so is only going to be my doctor till I go and see another in Feb.

First Appointment

It was far far shorter then Ive ever had a first appointment with a CFS specialist. I didnt time it but it like only felt like 20 mins thou may of been longer (a huge contrast to Dr Graham who had a 3 hr first appointment with me..and CFS specialist/researcher Dr Burnet had a longer appointment with me then Dr Buttfield).

The appointment being extremely short felt very rushed. Dr Buttfield was very nice and friendly. He thou wasnt good at listening at what I was saying. It was like (I dont know if this is correct) he had already thought about how he was going to treat me and had it all planned out before he'd even seen me and know about my case. (He may have a set plan of action/protocol he uses on everyone? or maybe as my appointment was days before xmas.. maybe he just had his mind on xmas rather then what I was saying in my appointment?).

He wasnt interested first appointment in seeing any of my test results or test abnormalities so didnt look at those (due to appointment length?)

After asking me what my top two symptoms currently were and me saying POTS symptoms and insomina, he then went on about putting me onto a med for muscle pain... something I dont get much of and what doesnt really bother me at all and which I hadnt even mentioned to him, I'd told him I USED TO get FM but dont get it any more. I told him 3 times that muscle pain dont worry me but he kept on saying.. he'd put me on a med for it.


He ended up at my insistance that muscle pain isnt one of my top symptoms, just saying the med may help me with other things but was very very vague and would give me no specific answer in what (His insistance on this med for no good reason and his lack of explaination, all made me feel like he may not have been being completely honest with me). The med was Valium/Diazepam.. 5mg, half to one tablet twice per day (morning and night).

He then prescribed me an anti-depressant Dothep.. Dosulepin at 25mg just once a night for sleep . As I know a huge part of my sleep issue is circardian rhythm issue which Ive been previously diagnosed with and that anti-depressants dont work on that kind of sleep issue, so I really wondered what on earth he was doing. (I currently dont have any depression at all and rarely do get that).

Anyway thou I was very concerned about what he'd prescribed, I do know that some of the tricyclic antidepressents can have some useful side effects on us and didnt wanted not to be seen as a difficult patient so did go and get those drugs to try them.

The one he said would help me sleep which I tried for several nights, I couldnt notice a difference. Fortunately the only side effect I noticed was my mouth all went weird feeling and my face felt like it was swelling (thou I got no swelling). It wasnt uncomfortable feeling, just a very weird feeling which had me keep on checking my face in the mirror to make sure it wasnt really swelling up.

The other drug. The Diazepam (Valium) (the one he kept insisting me to have to help muscle pain). I started the trial on it in the morning only to find that it sent me from what would of been a very good morning as I'd woken up feeling refreshed anyway and feeling like my head was clear, I took it and then had a foggy head and was tired the rest of day after taking it. So it just gave me symptoms to which I may not have had otherwise that day.

He rang me the day after xmas (within a week of my appointment with him) to ask me how the drug treatments where going but I had to tell him at that point I hadnt started them as I didnt want to start them right before xmas due to possible side effects and hence was only about to start them that day which I did.

He then rang back several days after that call to see how things were.. and once again went on about muscle pain so once again I told him I didnt see that as any real problem at all and at that point he said he'd given me the wrong drug and we'll sort out others for me next appointment. (He'd made another appointment for me 3 weeks from his first one). He is a doctor who certainly follows up his patients!!!

He's now said to try the Diazepam only at night. (last night as I'd overdone it.. I didnt need to take anything.. when I really really overdo it I got into hypersomnia with my sleeping instead of insomina)

My issue now is since I was trialing the doxylamine succinate (anti-histamine) for my sleep in the two weeks before I went to see Dr Buttfield, which for me does help quite a bit and it seems to have improved my insomina and overall general health some. Im now not actually getting sleep issues every single night. Dr Buttfield dont believe that Doxylamine succinate (nor Melatonin) works for sleep issues even thou I told him they both certainly do something in my own case and possibly the Doxylamine has improved my whole state. (needed new sleep med anyway due to how tollerance can build up to the Doxylamine succinate).

Anyway from here it looks like I'll be trialing the Diazepam only at night (and stopping melatonin and other sleep aid drug) and just trialing that on the nights I cant sleep to see how that one goes.

After the Doxylamine succinate, Im really needing to work out where my safe base line is now and if it has actually raised up.
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Symptom wise. after doing too much yesterday and ending up very ill (didnt try the Diazepam last night as thou daily activity has the side effect of making me very ill irronically also helps me to sleep), I woke up this morning feeling fine (yesterdays symptoms now all gone) and "feeling" energetic and feeling like I actually want to do things (no lethargy at all).

Spent this morning thou resting instead due to waking up with slight cough (sign something immune is going on and my body is now fighting something, this cough over overdoing things has been happening past 4mths or so) and also with slight muscle pain in one leg. (I'll give that pain a score of only 1 out of 10, so not a bother at all but something I dont want to make worst). By this afternoon as I knew it would, leg pain now at 0 (still slight cough) but I feel safe to be doing some housework now so will do some of that.

Does anyone know of a good CFS symptom chart for charting symptoms and degrees along with activity levels which I could print off to help me work out quicker if my baseline has changed?

Thats a good move using valium only at night. Dothep is a tricyclic ad which can help improve sleep quality through its actions on histamine receptors and 5ht2 serotonin receptors which help sleep. 25mg is a low dose and has help some improve sleep quality, so valium gets u to sleep and dothep keeps you there hopefully. This combo is sort of similar to dr cheney's recommendations of klonopin and doxepin. Try both on there own and see how it helps your sleep. Dothep at 25mg is low and good to alternate when u use it to avoid tolerance, maybe swap it with doxylamine?? just suggesting this as some meds stop working for sleep as now u have a few things that help u sleep that u can alternate with and avoid tolerance, so just a thought. You could be the sort of person that doesnt get tolerance issues as well. This dr seems like alot of other cfs specialists in that he wants to stabilze your condition by trying to improve sleep first.

It will be interesting to see what he has to say once your sleep is more stable and what other treatments he may suggest. He doesnt seem too bad tania, he sounds worth staying with for awhile and see what he has to offer you.

good luck.

Nods that is what he also said.. the Dothep helps you to stay asleep once asleep. I have no issues at all thou staying to asleep once I are asleep, its getting to sleep which is often the big issue.

Yeah.. he's not a bad doctor and does seem to have a handle on what drugs can be most useful and what arent with the CFS patient group and is prescribing as you said small doses. (happy he realises SSRI drugs not good for us).

Klonopin is a drug which didnt give me side effects (other then making me get too not worried about things and hence I stopped worrying about stuff one needs to worry about and became dangerous and not caring about stuff if I was having a mood swing), which is quite different to how the valium affects me. Klonopin never increased brain fog but rather just made me feel good.
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I was surprised how different he seemed when he spoke to me on the phone (not all rushed like he was in his appointment and listening better). Maybe he was having a bad day or something when I saw him.

Dothep is contraindicated if you have "Hypotension, vulnerability to dizziness or fainting" Of particular interest, it can cause tachycardia, dizziness, and hypotension.

Melatonin can also cause orthostatic intolerance to worsen.

nods yeah. It just gets to the point where one has so many different health issues at once, that basically everything becomes contraindicated for some reason or another. The other med I was trying was contraindicated too for two different reasons. (The specialist due to him not going throu my medical file would of been unaware of all the contradictions for me).

various general things, christmas, lost my licence due to the ME etc

Mood wise over Christmas Ive been on such a high.

I just love some of the xmas presents I got. My mother brought me a washing machine (second hand from my aunt but its a good one) as mine had stopped going 4 mths ago which was making my life so much harder as it then meant me having to get a ride to the laundry mat to get it done.

An uncle (who I never see, he gave another my present to give me), gave me 3 relaxation CDs.

My daughter gave me $20 to go towards whatever I like. So I brought myself a mini stereo/CD player seeing I havent had a stereo or CD player now for at least a year. (The one I had got stolen in the last housebreakin and the small portable one I had stopped going).

My grandmother gave me some money so I brought myself a really nice decorative bag stand with it (it also acts as like a storage place inside the bag stand). Previously I had all my bags all thrown in corner of my bedroom as I had no where at all the put them and they wont fit in my wardrobe.

My boyfriend gave me a ceramic frypan which Im very impressed with. All my others had my food sticking majorly even new ones or I burn it badly on bottom due to the memory issues (thou nowdays Im getting better at remembering to put on alarm whenever I put something onto the stove).

I dislike the teflon frypans as Ive found when one burns those, the teflon can start flaking into the food. The eggs even where oil wasnt, just slid out of the new ceramic frypan. I highly recommend this kind of cookware as its going to be so easy to clean. Its expensive but worth it if it stops me from getting wrist pain from trying to scrub pans.

The one I got has an added bonus of having a part of it which lights up when hot so if Ive forgotten to turn the stove element off and left the pan on it, Im more likely to notice (my current stove elements one cant always tell when they are on so its quite dangerous for me).

Christmas is the only time of the year I really spurge and by something nice for myself so this xmas my xmas treat to myself, I got myself a game Ive wanted for the past 18 years!!! Sims ....
(with my internet dial up connection due to not being able to afford broadband, I cant play games at most of the online sites which kind of sucks. So with this game I'm able to have fun).

The motor vechiles (oh how does one spell that) dept. sent me a nasty xmas surprise that I got days before xmas... notification that that on the 26th Dec, my car licence due to my health issues would be removed.. Thou I havent driven in 2 years, well that truely sucks!!!! I keep hoping to be able to drive again and now with it removed, Im wondering what I'd have to do to get it back.

That happened just due to me applying for disability parking on grounds I get orthostatic intolerance so needed disability parking as too often others have had to carry me to cars.

It is thou quite wrong I believe they took it away for that as I dont and wouldnt drive while dizzy!! and of late my concentration has been far better and probably okay for me to be driving again thou I wouldnt do so alone as I too often get dizzy when Ive been out on my feet and hence likely to end up stranded by driving somewhere then being on my feet and getting dizzy and not being able to get back home.

My boyfriend is convinced we can get my licence back by doing so letters, so hopefully that is the case. (I know my doctor put on the forms that he didnt know if I was safe to drive or not and that that info would have to come from another specialist). So it was due to that not knowing thing.. it got taken away. I dont think they even contacted the other specialist at all to ask.

The only time Ive ever driven while knowing I really shouldnt be, was when I was forced to by Centrelink (goverment dole people) under the threat that they would cut my payments off if I didnt get to somewhere and they wouldnt accept sickness certificates from doctor when I gave them that (they actually handed the sickness certificates back to me, refusing to accept them).
On that occassion I did end up having a car crash dur to being forced to drive while too tired to be and smashed up two cars.. but it wasnt my fault.. they forced me to do it with their threat as I couldnt live without money if they'd cut me off as threatening they would do if I didnt attend the part time work they forced me to do.
I still wish I could sue them for their threats and forcing me to drive when I knew I was unsafe to be, it was me then who had to pay for smashed up cars.
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Today symptom wise... irronically I still have slight calf pain in one leg, its irronic as I've been going on about how i dont get much muscle pain and here Ive been and had it much of the time since the day after xmas. Its only at a level 1 out of 10 thou so Im not bothered, but it isnt clearing up like it usually does.. goes for a short time but then comes back in.

The cough I had yesterday is now gone, whatever "reactivates" has settled.

3.00pm today.. I had an intense desire to sleep, I suddenly felt so so tired and was starting to fall asleep while doing things, I was so "sleepy tired" I just wanted to cry, couldnt bear feeling that tired and I was fighting with myself as I didnt want to go to bed. Strangely with what I thought was POTS tiredness as today is very HOT, eatting fixed the tiredness so it couldnt have been due to the heat and POTS. (Interestingly thou feeling terribly sleepy tired, I feel energetic thou not all wired, at that same time.. but like falling asleep while being active).

(only those who have ME/CFS I think could only understand my last paragraph, doctors dont have a clue when one tries to explain there is so many different kinds of tiredness we have).

Eatting can be one of my POTS triggers. So Im wondering now if it that sudden bout of extreme sleepy tiredness was low blood sugar and wished I'd taken a blood sugar reading at the time but didnt as I had blamed POTS for the extreme tiredness I was feeling or maybe it was something to do with my screwed up circardian rhythm cycle kicking in.

I seem to have become allergic some to normal kind of ant bites. I got bitten by a little ant 5 days ago and the bites come up in big red lumps. Still got them.

Awww, so glad you had a good Christmas.

No fun about everything else...

good results, Tania! heapsreal is a smart cookie with supplements.

Valium trial update to help sleep

I havent been online for a while as Ive been so enjoying my Christmas treat, Sims
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At first, with just taking it at night, the 2.5mg of Valium/Diazepam did seem to be helping me get to sleep.. it was working about the same as the anti-inflammatory sleep aid Doxylamine Succinate was.. so just helping some (about half the time it was helping). Doxylamine @ 6mg works for me a bit better then Melatonin 3mg does. Melatonin and Doxylamine together do an ok (not great but ok) job at getting me to sleep.

Now thou the past few days, the Valium suddenly stopped working at all and I arent no longer getting that feeling tired/sleepy side effect with it, nor the very noticable head fog with it which was really bothering me before. I cant work out why this shift.. I could feel the affects of this drug for 11-12 and a half hrs before.

Maybe due to that I end up getting hypersomnia when Ive been doing a lot more, which I would of done some over xmas.. maybe that is why this drug previously seemed to be helping me to sleep (delayed xmas affects??), maybe I would of slept anyway?

The past 3 nights Ive taken the 2.5mg Ive been taking at night, with no affects at all and with my sleep just getting worst and worst each night (the specialist told me to stop my supplements which were helping it so Im now worst with my sleep then just before I saw him). This morning Im now completely back to my old sleep patterns the supplements where helping me to overcome and didnt get to sleep till 8AM!!

....... and then was woken up by a phone call at 9.30AM by the guy whos been looking into getting home help for me (which has been trying to be sorted out now for months). What part of "I have terrible insomnia" "please dont ring me in the mornings" dont people esp those who are meant to be helping me understand!!!. I still have no idea what he said to me on the phone after waking me after 1 and a half hours sleep. I know he made an appointment with me but I dont have a clue when, I cant remember anything else which he said to me.

Most of the time when Im woken up by someone and its daylight, I then cant go back to sleep.. so its then surviving a day on 1-4 hrs or whatever it was sleep. Issue then is lack of sleep then makes it even harder for me to sleep the next night as Im then overtired... or wired and tired then. I can end up days without sleep.

This morning .. I started hallucinating or went into a waking dream (I was still awake) due to being so tired, that happened about half an hr after I took a second half of a pill of valium at 7AM to try to get some sleep. (Fortunately the halluncination was a pleasant one and I was fully aware that I was just seeing things and it was all from being far too over tired).

Was it the tiredness or the Valium which made me hallucinate?? I was seeing all little children running about me and so laying there watching them play while still trying to sleep. Thank God I didnt hallucinate nightmarish stuff thou even then it would of been fine as long as I knew I was hallucinating.

New plan is to now double the amount of Valium Ive been trailing and take the full 5mg dose tonight before I plan to go to bed.

Ive also confused when my appointment is with CFS specialist. I KNOW I wrote the time and date down in TWO different places to make sure there was no confusion but cant remember where I wrote it and cant find it. As he only works once a week, my boyfriend has rang the receptionist to try to find out the time of my appointment (which may be tomorrow but I dont know ) but the receptionist said she dont have his appointments so doesnt know. He hasnt given me his email and when he phones he phones me on a private number (i think) and hasnt given me an alternative number, so now I have no way of finding out my appointment.
That is why I answered the phone this morning after just 1 hr sleep, I was hoping it was him ringing. I hope I dont miss my appointment due to all this.
.......

Symptoms

Thank God I did end up getting to back to sleep after that 9.30AM phone call. I ended up sleeping till 2pm. So that was 6hrs sleep for last night. Im a person who with this illness does best on 9-10hrs sleep (before ME/CFS I only needed 6-7hrs sleep per night), so right now are sleep deprived and hence would be very emotionally sensitive to anything which went wrong and just dont feel like doing anything.

The night before, thou I didnt get to sleep till 6.30AM, I ended up sleeping for 10 and a half hours and then woke up feeling great and full of energy. I ended up doing more physically in a day then Ive done for a very very long time. (I actually house cleaned for 70mins straight only sitting down briefly during that to do something. Usually I can only be on my feet between 30-45mins.. an hour at the max at a time). 10 and a half hrs deep sleep did wonders. I so need to be able to be getting that more.

No more symptoms then that today.. as Im just sitting on my butt since I woke up at 2pm, not doing a thing as I just dont feel energetic at all and hence have no will power to be doing so. I did thou cook myself a nice breakfast.
.....

edit..
Also more weirdness with my sense of taste today (it was weird yesterday too). I havent had my taste sense mess up for a couple of years so dont know why that stranger symptom I get with the ME is coming in again (a few years back I had an episode where a sandwich I made tasted like pineapple and I was getting other taste sense screw ups).

My cream today tastes like coconut (I dont buy coconut) and my cream cheese which I just opened has a peppery taste to it and it hasnt got pepper in it. Then something else which wasnt a sweet food, had a sweet taste to it.

So right now I dont have a clue about how what Im about to eat is going to taste.

constipation (I have the IBS of the constipation dominant variety) has been a bother today and has made me bleed there more then I normally do.

Ended up in loo for ages, rocking on it with toilet in just to the spot, for it to be pressing area which helps me to go (rocking on toilet also helps me to pee if Im having slight issue with starting bladder flow or fulling emptying my bladder). I really got to remember to take my fibre supplements daily.

11pm now.. so time to try taking 5mg dose of Valium....and hoping it wasnt that which had me halluncinating earlier. ***fingers crossed.. if i start halluncinating and its bad, hopefully there will be people in chat I can talk to***

Second appointment with Dr Buttfield.. another med change

I dont know why he put me onto the Valium in the first place as now he's taken me off of me saying its not a med really for sleep.

Ive now been put onto Temazepam for sleep (10mg before bed). He has said this is only to be used 5 days straight to try to get body to adjust to a normal sleep time and then only 2? or it may of been 3? times a week. The idea is to take it an hr before one usually gets to sleep to try to move the sleep cycle slowly forward to where it should be.

**fingers crossed this is going to work** Last night thou I didnt have any post excertional symptoms after having to be taken to Adelaide to see him.... I did get to sleep at a decent hour so ended up not having to take it (so I guess that was a post excertional response for me thou a good one). I ended up sleeping 9 hrs which was great.

The appointment thou with Dr Buttfield did go great (he certainly seems to know his stuff thou he is pushing that relaxation before sleep will help too, something in my own case ive found no good at all), thou once again I found it too short.. no time at all to bring up the fact my licence was recently taken away. Next time he wishes to bring up and teach me, how to exercise, something I know from past trials of things.. it isnt unfitness causing my issues.

I went throu a stage where I was able to exercise (as long as I remained cool) for 2 hrs per day for 6 weeks and by the end of that, I was no better or worst then I'd been to start with.. my actual improvement at the end of that "getting fit" was being able to run less then 10 SECONDS longer eg for 50? SECOND time period at a time, then before I started getting fit... my inability to aerobically exercise didnt change at all!!.

Yesterday .. thou I had to go to town for the specialist appointment, once again for some reason the POTS didnt kick in (did the taking that anti-inflammatory for just those 2 weeks fix the POTS????).

The only symptom I got yesterday was I couldnt write. As I was feeling so well I asked my boyfriend to take me to the shops in Adelaide after the appointment (which is something I never do as I usually too ill after them with POTS so in past always have to be taken straight home).

At one of the shops they wanted me to fill out a membership thing so I could get a store discount and it was only then I found I had issues. I got half way throu a very simple form (LESS THEN ONE MINUTE OF WRITING), only to find I was then struck with wrist (like bone) pain and just couldnt write anymore. I ended up embassingly having to ask the store person to finish filling the very brief.. less then one page form of basic details in for me. My wrist didnt go back to normal for 2-3 hrs.

Then after I got taken home.. still feeling actually well... I was cutting my boyfriends nails (something I rarely do for him as often I dont feel well enough) but ended up cutting his finger open as he was talking to me as I was cutting his nail and it takes my full concentration to be able to listen and understand when someone speaks to me... so he ended up with bloodied finger and having to go home with a bandaide.

Other then those two things.. trouble concentrating on any more then one thing.. and finding myself unable to write.. no other symptoms yesterday.


Today.. no symptoms either so far (other then bad dreams last night with that I also noticed that once again that a nightmare dont seem to really alter my heart beat. Heart beat dont seem to have a normal speed up capicity to fear. After affect from that nightmare was slight nauseaous for a very short time).

Temazepam trial

I'd been so excited to finally to have been giving sleeping pills as I really thought they would work, well all that has happened is Ive been highly disappointed in them.. I arent even sure if they are doing anything at all. (I dont know what Im doing wrong.. maybe Im trying to take them too early as Im taking them at 4am?.. which is actually probably earlier then what the doctor meant??? for one with the degree of sleep issue I have). He said they only take half an hour to start to work.

Here's how things have gone so far...

night 1 - I took when I got tired, it was 4am. Response to 10mg Temazepam, I felt no extra tiredness at all.. NOTHING at all, no side effects, no body response to the sleeping drug. I layed in bed for one and a half hrs doing relaxation etc etc before I finally got to sleep at 5.30am which I suspect would of happened that night even without the sleeping pill.

night 2 - Planned to take the sleeping pill at 4am again. I got tired at 3am... I was almost asleep at 4am so ended up not needing to take it and feel asleep naturally at 4am after laying in bed trying to sleep for an hour.

(I then had a ME crash.. probably why I fell asleep myself at 4am.. and ended up in bed and sleeping for 15hrs straight, weakness/complete exhaustion (no muscle pain and no form of any other kind of pain.. just a complete wipe out). Id overdone it that day by trying to do a few hours voluntary work online which I thought I'd handle seeing Im online a few hours many days but I was wrong. (I should of not done anything that day as I'd had a doctors appointment the day before so shouldnt have been trying to do even something easy for another). Im glad I hadnt taken the sleeping pill that night as I may of wrongly blamed it for that crash.

night 3 (that's tonight). I will be taking the sleeping pill, taking it right now as its 4am and Im wide awake... tonight Im not even tired in the slightest so maybe I are doing the wrong thing taking the pill this early.
I wish I had my doctors phone number to discuss this and if he thinks I am.

(He said use drug to bring my sleep cycle forward very slowly over 5 days.. looks like this is going to be a complete failure as in my current wide awake state.. I doubt that drug is going to do anything esp when it didnt help at all when I took it when I was tired).
.........

Last night (early hours of Saturday morning) something very coincidental happened (as I dont really believe in strange coincidents, I'll take it as a spiritual warning, I was actually sitting here, worrying about the risk of addiction of sleep drugs when the following happened).

I started getting phone messages at 3AM from a stranger. Turned out this young guy was in another state of Australia (Sydney I think he said), he had accidently reversed the last two numbers of his mates phone number so hence then got me at 3AM instead of his mate... he was profusely appologising, worried he'd woken me but of cause that was fine (I was alone and bored out of my brain at 3AM). I asked him if he was up at this hour due to Friday night partying... only to have him reply.. no, he has chronic insomina.

When I asked him if he had tried taking sleeping pills for it.. he replied that he used to but developed a serious drug issue from them and hence cant have them anymore. (what a weird thing to happen in regards to my thoughts).

Him and I kept each other company with back and forth messaging till 4AM (it would of been 4.30 for him). Yeah he was single but too young.. hahaha

Anyway.. I take that phone call as a warning to me to be extremely careful with these drugs thou I know I need to be anyway. (Doctor said it only takes 10 days to get addicted to them).

Hi Tania, sorry the pills didnt work. I have used temaz and found them useless too. Now u have a doc willing to help you i would suggest to ask him for zopiclone also known as imovane. It can get u a good 6 hours sleep atleast and i would also look into something to increase the length of your sleep, look into doxepin, its a tricyclic antidepressant that is used in very small doses compared to depression(100mg plus). It takes a couple of hours to kick in but works well. Many start at 10mg and increase it in 10mg increments until say 50mg before they find the dose that works for them. And its always good to alternate your sleep meds to avoid tolerance and increasing doses. Do u still sleep well using doxylamine??

cheers!!!

I still usually feel washed out like im running on too little sleep even if I do manage to get 6hrs sleep... my ME body does really need 8-9hrs sleep when its doing ok. I seem not to start to improve with things unless Im managing to get that much sleep (its like my body needs that time to be healing).

I not currently now taking the doxylamine due to trialing this new stuff, I will thou go back to taking it once Ive worked out how well or even if the new things Im trialing helps (and I cant take this stuff for long anyway). My current doctor dont like supplements including that and hence wanted me off of them all so I did (hence then was even worst).

As I came to a complete conclusion after 4 doses that the dose of Temazepam he was trialing me on (10mg) wasnt working at all for me, the next night it didnt work either.. not in the slightest bit and hence me then ended up awake for over 24hrs... and as Im having to wait to see him again and havent got a phone number to ring to discuss it all in the meantime so I decided to research myself to see if maybe I could raise the dose of this med to see if it works at a raised level.

Out of sheer frustration (I ended up going well OVER 24hrs with no sleep at all (it may of been 36hrs awake followed then by another 15hr wipe out/crash.. that is the second crash Ive had in the matter of past week or so), I was going to take double what he recommended as I feel sooo discouraged with nothing helping.

On researching it thou, I saw that it says online that the typical dose for treating insomina is typically 15mg, less thou for elderly patients and those with illnesses (so I guess that usually includes us) so last night decided to go and trial a 15mg dose myself while waiting to see the doctor again. (He hasnt phoned me as he did when I was trialing the other drugs so I havent been able to discuss things with him).

I took a 15mg dose at around 4am-4.20am this morning when I was fully awake and not tired at all thou had had no sleep at all and this time .. it actually did work... it clearly worked and quite fast. So obviously its a case of that 10mg just being a wrong dose for sleep for me. So from here I will stick with 15mg for 4 more days to try to move sleep forward (I'll try taking it at 3-3.30am tonight) and hopefully the doctor is okay that Ive been taken a higher dosage than he told me to.