lowering my dose due to night sweats & vivid dreams [Archive]

nicola1980

22-11-15, 05:22

As many of you know I've been taking 187.5mg of ven successfully for a while now but unfortunately I can't stand the night sweats and vivid dreams anymore, I wake twice a night absolutely sodden and shaking, this is my second time waking drenched tonight and I'm already having to sleep on a towel and flipped my duvet over as my sheets were wet through and I didn't want to wake my husband by changing them, I've seen my gp about them and he's done every blood test and sent me for a chest Xray to check nothing else was causing them and all was fine apart from me being slightly anaemic so I've decided from this morning I'm just going to take 150mg instead of my usual 150mg plus 37.5mg, I really can't carry on like this anymore, I'm exhausted due to the constant waking and the dreams are really unsettling me so I'm going to try and lower my dose and see how that goes. I've read all about ven withdrawal and in honestly it scares the life out of me but I can't tolerate these permanent side effects either anymore. Wish me luck XX

MyNameIsTerry

22-11-15, 05:47

Good luck with it, Nicola. :hugs:

I think withdrawing form these meds carries a fair few worries for us anyway let alone one of the problem withdrawal meds.

It surely can't be as bad as the increase? I hope not. I've only ever come off Citalopram before but whilst I found it very hard to start it, coming off was a doddle but I was a lot better by then. You've been saying you are a lot more back to normal recently so thats a good sign and maybe this is just a little too strong now?

You could even split that pill and slow down the reduction couldn't you? Doctors do like to work in dosages that drug companies produce as opposed to patient need a lot of the time and don't think about halving doses to see how it helps or reduces any withdrawal or onset side effects.

nicola1980

22-11-15, 06:23

Thanks Terry unfortunately I'm on the slow release and you can't split them plus I've got capsules too so it's impossible to split unless I want to count the beads which alot of people do but I don't really want to go down that road, I'll see how I go over the next few days and will have no choice but to reinstate if it's gets too bad but I am in a much better place now so fingers crossed and I can't tolerate these permanent side effects anymore, I can all but give it a shot!! XX

MyNameIsTerry

22-11-15, 07:34

I didn't know they did the bead thing in Ven, I just thought it was Duloxetine. It is a pain if it's the same as mine there are hundreds of the tiny things and I remember reading that they need to be in capsules as they aggravate the throat otherwise.

It's really good to hear you are a lot better. I bet you thought that was many days off when you went through the hell of upping the dose before?! Pulisa told me her daughter struggled on mine and came off quite easily and I think she said she got her daughter off Ven completely over months and her daughter (I would think) would be quite attuned to side effects.

I'm thinking that it might be easier to come off the XL version. I know plenty of people, you included I think, have mentioned how the standard version is less tolerated. That must be due to the half life issue as the XL one is much longer so your blood plasma is at a more stable volume. I've been wondering about this with my med because it has a pretty short half life too and I've noticed how later in the day (I take it before bed) I will feel a fair bit better. So, if thats how it yours affects people hence they switch to the XL version, the withdrawal would seem more stable too.

nicola1980

22-11-15, 08:49

Thanks Terry, I'm petrified to go back to that place I was in before but something has to give as these night sweats and dreams are taking their toll on me physically, I've read so many horror stories of ven withdrawal that I'm literally bricking it!!! XX

MrAndy

22-11-15, 08:50

good luck Nicola,I came off sertraline because it upset my sleep I remember the night sweats well they were horrible
Come off slowly and you will be ok

MyNameIsTerry

22-11-15, 09:05

Well at 150mg as far as I know the Serotonin element of this med is maxed out so dropping down to 150mg is going to be more about epinephrine. You will still be experiencing the impact of that as it kicks on at 150mg from what I've read/seen. So, by reducing the dose it would mean your brain uses more of the available epinephrine and I would think that is much more tolerable than increasing it in the first place which ramps up things until you get used to it.

With it being more an adjustment, hopefully it will be low impact. Coming down all the way would seem the harder task or dropping a lot but it's so individual like them all and some people feel the smaller drops near the end and some feel the larger drops at the start - it's just such a minefield!

pulisa

22-11-15, 09:09

Nicola, I think the problems with ven withdrawal come with getting off the smaller doses and then dealing with the ven-free period without panicking and reinstating the drug. As you know my daughter is on the autistic spectrum and has severe anxiety/OCD. She came off venlafaxine over 6 months ago and has stayed off. If the drug is causing you this amount of distress and is producing such side effects then there is no point in remaining on such a strong drug which is doing you no favours.

You may find that the night sweats reduce in intensity as you lower your dose? You may be more comfortable to remain on a lower dose if this is the case? I think you've just got to give it a go. Everyone reacts differently and you could withdraw completely with few problems. To be honest my daughter's anxiety can be of such high intensity anyway that it's hard to say whether it was withdrawal or her norm. I'm used to living with her intense anxiety.

I really wish you all the very best with this and please keep us posted? xx

nicola1980

22-11-15, 09:34

Thankyou everyone for all your help and support, I'll keep you posted how I go XX

MrAndy

22-11-15, 09:38

I have a close friend on 50mg and he does just fine on it,like others have said you may do better on a lower dose anyhow
Good luck we are here to support you

nicola1980

22-11-15, 10:12

Thanks Mr Andy that's reassuring to know XX

pulisa

22-11-15, 11:55

Sometimes lower doses work better but the psychs don't seem to get this-they just up the doses and don't think about/know about potential side effects. I'll be very interested to know how you get on, Nicola and I do think that you are doing the best thing to protect your health xx

MrAndy

22-11-15, 11:57

I agree I think the high doses they dish out are looking for a quick fix and ridiculous ,I was lucky in the end and had a good consultant that only ever kept me on a low dose of meds

pulisa

22-11-15, 13:27

I think that having a decent and knowledgeable consultant is absolutely essential when it comes to prescribing and monitoring these meds. Time should be spent actually listening to patients as opposed to totting up the scores on questionnaires.

Michelle1

22-11-15, 13:28

Hi Nic
I totally agree with Pulisa and Mr Andy. High doses are not always best especially if you are experiencing unacceptable side effects as a result. When I was on 150 (my highest dose of ven) I too experienced the nightly cold sweats also had no motivation and put on loads of weight, it also affected my blood pressure and colesterol.

Hopefully reducing will reduce your side effects of the ven, you shouldn't notice many side effects reducing from 187.5 to 150, the worst of the withdrawl effects are reducing from 37.5 to zero and must be done very slowly.

I'm off ven now (been off since end July), I really hope you feel better soon and will keep checking in to see how your doing. Personally I always felt better on a low dose of ven 37.5 to 75 max. When I first took ven about 14 years ago 37.5 mgs was the standard starting dose and 75mg was classed as a mid-high range. Also only pdocs could prescribe it, gps were not allowed. It always shocks me how many people now start on 75 mgs and increase again only a few weeks later, scary as it is such a strong powerful drug.

I think your doing the right thing in trying to reduce and know that you will do this slowly and with the support of your doctors.

Really hope it all goes smoothly for you.
Xx

pulisa

22-11-15, 13:34

Good to hear that you are off ven and doing well, Michelle. I also don't think that GPs should have a free range with prescribing these drugs especially when they are unable to monitor them appropriately. It's shocking to read how freely they are administered and increased.

MrAndy

22-11-15, 14:17

I had some terrible care when I was first becoming ill,shocking in fact
Then after I was released from hospital I was refered to a psychiatric surgery where you were only dealt with by experienced mental health doctors and nurses.it was a godsend and put me on the path to recovery,why they don't have more of these in the UK is anybody's guess
In the main GPs don't have the experience or time to deal with mental health issues

nicola1980

22-11-15, 15:32

Hi Michelle, it's lovely to hear from you, how are you? So your off the ven then that's brilliant XX
Thankyou everyone for all your support it really means alot, I've managed to work myself up into a bit of a0state about reducing, looking for withdrawal etc, I think I'm just so scared to go back to that dark place I was in. Unfortunately my physc is absolutely rubbish so has no idea I'm reducing myself, I've no faith in her at all anymore, she's very old school and has to look in her bnf or whatever it is whenever I ask med related questions, my doctor is super supportive tho but gap admitted he doesn't know much about ven but I think I'm going to go and see him just so he's aware what I'm doing. I've got an awful cold coming so that doesn't help but you guys are amazing thankyou XX

pulisa

22-11-15, 17:13

You know who you trust amongst the professionals you see. Having zero confidence in the psych is something I can well relate to. It's so bad when it comes to this and we shouldn't just have to put up with a shoddy service when such powerful drugs are involved. Finding the right support network is crucial as Mr Andy says.

I think it's a good idea to let your GP know especially as he's supportive. I can understand you being very frightened of withdrawal but I still say the hardest bit is the withdrawal from the lowest doses and you may decide that you feel better on a small to medium dose.

Anyway, that makes 2 people who have withdrawn completely from ven and lived to tell the tale!:D

nicola1980

22-11-15, 19:25

Thanks Pulisa, I've had a few tears today but I think part of that is exhaustion too as the sweats and the dreams are waking me all the time and I've not had a solid nights sleep for months now, I'm feeling much more confident tonight tho, i don't expect it to be plain sailing but it's just the fear of the unknown but the positivity on here has helped tremendously XX

MrAndy

22-11-15, 19:35

You can do it ,my advice would be to put absolutely no pressure on yourself to get off them quickly.Take it slow and steady,if you drop a dose don't put any timescale for the next drop this will cause anxiety.I am coming off olanzapine if it takes me a year or 1 month it doesn't really matter as long as I am off it one day.HOld each dose for at least 1 month then see how you feel you might not want to or be ready to drop again if not carry on with that dose until you feel strong again
The tortoise wins the withdrawal race

pulisa

22-11-15, 20:04

Just take it a day at a time-there's no rush and you will be in control of your dose reduction. You want rid of these night sweats and I don't blame you. Those of us who know the "abyss" will always fear a return but the knowledge we have gained along this route (I'm not saying "journey:D") will give us power and insight which we didn't have before xx

---------- Post added at 20:04 ---------- Previous post was at 20:02 ----------

You can do it ,my advice would be to put absolutely no pressure on yourself to get off them quickly.Take it slow and steady,if you drop a dose don't put any timescale for the next drop this will cause anxiety.I am coming off olanzapine if it takes me a year or 1 month it doesn't really matter as long as I am off it one day.HOld each dose for at least 1 month then see how you feel you might not want to or be ready to drop again if not carry on with that dose until you feel strong again
The tortoise wins the withdrawal race

Sorry, Mr Andy-I took ages to post my effort and probably duplicated what you said.

MrAndy

22-11-15, 20:33

There's method in our madness :D

nicola1980

22-11-15, 20:52

Thankyou your all so brilliant, I've had a bit of an upset tummy tonight so not sure if it's nerves or a bit of withdrawal as I know the half life is very short on ven but I'm trying not to focus on it
how you getting on Mr Andy with the olanzapine taper? I lowered my dose a year ago to 2.5mg from 5mg and it was a struggle but I was determined to do it, it's not an easy med to withdraw from either XX

MrAndy

22-11-15, 21:09

I dropped from 5mg to 2.5mg about a month ago,I've had rebound insomnia and bad headaches but that's about it.Sometime in the new year I will drop again,I'm in no rush and feel loads better on the lower dose besides the lack of sleep and headaches.I feel less lethargic in the day and my moods better

nicola1980

22-11-15, 21:37

I also feel better on the 2.5mg and I've managed to loose the weight I put on with it and more and my appetite has lowered immensely, when on 5mg I would be raiding my cupboards with hunger at night, I intend to come off it completely too, I was intending on doing that before the ven but I couldn't take the sweats and dreams any longer so the olanzapine will have to wait a bit longer XX

MrAndy

22-11-15, 21:54

I would stay on the olanzapine for now if I was you ,it's a good mood stabiliser and will help you come off the ven.Drug free I wonder what that's going to feel like :unsure:

SADnomore

23-11-15, 03:08

Hi, all ... Been awhile, new job and exhaustion limits my screen time these days. I do look in though, each week even when I don't have time to write.

I would like to say, (no offence to anyone), it seems to me that I read a great number of posts on NMP from people who struggle hard to be "drug free", only to realize months afterwards that they aren't coping well and need to get back on a medication. Then comes again the re-adjustment, the side effects, etc. Finding out that a drug that worked before is now useless, especially if there have been numerous withdrawals and restarts. ... I know that for me, and I suspect there are lots of us on here, depression and anxiety are compounded by seasonal affective disorder to some degree. Well, so long as I live so far from the equator, I can't imagine not being subject to worsening symptoms in winter.

I have to think that, for many people, the lack of serotonin or melatonin or whatever it is that makes life tough at times, physiological factors will come into play without some kind of intervention. Not necessarily drugs, maybe hormones, maybe daylight plus sleep hygiene and exercise. Sometimes though, hormones cannot be satisfactorily addressed. Exercise and daylight may be severely limited. And, as in my case, it may be certain situations (okay, and people) that make them unavoidably anxious. Unmanageably so. So, much of the time we can, or could, be fine without medication if it weren't for such factors over which we have little or no control.

But there they are. These are amongst the factors behind why the drugs were recommended in the first place. And if nothing changes, then nothing changes. So long as I am still closer to the North Pole than I am the US border, then daylight in winter is going to be all too short. The bitter cold will keep me indoors, and my energy and mood will suffer. ... Partly because of the difficulty of complete withdrawal, I was advised to stick with ven in a lower dose, over summer. I am surprised, myself, but once past the initial start-up, I have found it has become much easier to titrate up for winter, and down for summer. But it is true that we are all different, and some may feel a huge difference in small changes to dose.

Good luck to you Nicola hon, I have appreciated your support so much in past. (Same to you, Pulisa, Terry, MrAndy.) I remember the crazy dreams and sweating from ven. I feel blessed that these eventually passed for me. Come to think of it, I didn't associate them with a particular dose, but perhaps if you are able to, then you can stay just below it? I am back up to 150 mg now again and okay for now. I kind of hope that I don't have to go as high as last year (300) just to keep functioning. I didn't like the way I felt, flat and at the same time, propelled about. However, it was still better than the pain I was in before ven.

I really cherish how supportive this group is, and encouraging. I congratulate those who are functioning well without drugs. Of course that is optimal! At the same time, however, I think it is worth considering that struggling to maintain a low dose in winter, much less complete withdrawal, is just not feasible for some of us.

Marie xo

nicola1980

23-11-15, 05:59

Well I had a complete breakdown last night, I had awful diarrhea and felt terrible so I went to bed but I started shaking and crying uncontrollably and felt totally out of it which scared me to death, I got up and my poor husband didn't know what to do, I was just sobbing and my whole body shaking, I was asking for my mum which I've not done in years and she's abroad on holiday, I can't believe dropping just 37.5mg can make me feel like this, it is more than the recommended 10% drop and I felt fine until 9pm then it hit me like a ton of bricks, I couldn't get off the loo and the fear I felt was immense, it was like I was out my body, I had to take 4mg of Diazapam to try and calm myself down, I eventually went back to bed and with the help of the Diaz I managed to drift off but was fitful all night and had bloody nightmares which is worse than the vivid dreams, I've been tossing and turning since 3 with a pounding headache and eventually got up but now I don't know what to do? My husband after seeing me last night thinks I should reinstate at least for the minute especially as I have a lot of pressure on with my son being recently diagnosed with ASD and I've got his birthday and Christmas to get through, I think what scared him was I was crying so much and just asking for my mum and that's what I was like when I was very poorly. I'm so confused and don't know what to do for the best, I want to lower but I need to function especially for my son, I worked it out that it hit me 15 hours after my missed dose. I've got such a bad headache this morning so just going to take some tablets and mull it over, I might try and ring my mum abroad soon for her opinion XX

---------- Post added at 05:59 ---------- Previous post was at 05:10 ----------

Sorry Marie I didn't mean to ignore your post, I just went off on a tangent, thankyou so much for replying and I hope that the 150mg is the dose that works for you but don't beat yourself up if you do need to increase especially over the winter months as I know you struggle then the most.
I've just spoke to my mum, fortunately she's an early raiser, she's told me to go back to my original dose asap and to make an appointment with my gp as she says with me being anaemic that can also cause night sweats and exhaustion, I refused iron tablets as I don't like the side effects of them on my tummy so my gp is closely monitoring it with 4 weekly blood tests but I have lost more weight which is also a sign of anaemia so I'm going to go and see him and see what he says, I'm due another blood test in December for it anyway but I think something needs to be done sooner. I feel like I've failed at the first hurdle but after last night I can't risk becoming ill again not for me but for my family my son especially XX

MyNameIsTerry

23-11-15, 06:41

I'm sorry to hear this, Nicola. I think without going a few days it is hard to gauge the true impact as you need to know if it repeats but I appreciate how much hell it can be and I would be asking myself the same questions.

Your med is the XL one and it's half life isn't too much lower than Sertraline by the looks of it so I would hope this would make the withdrawal a bit smoother as the normal version would mean a very quick drop to the new dose. It looks like you were at 39 hours so given the parent compound is 15+6 hours for elimination you could have been somewhere between 25-50% of the dose adjustment based on a standard pharmacokinetic model.

If you believe that this is the withdrawal and that nothing else could have contributed then it makes sense to try a slower taper and see if it's a bit easier. I was hoping you wouldn't experience much of a change from a small dip but these adrenaline meds are complicated. I guess it's worth seeing what others who have come down from >150mg doses think to see if they felt some of this and if so, it must be the adrenaline element. Then a slower taper would be the best thing to try but it's difficult with these damn beads isn't it?!

I hate these beads! The drug companies should be made to produce lots of doses but sadly both they and the doctors don't seem to care about having a proper structure to allow us to taper on & off safely!

I hope you are feeling a bit better soon.

Marie - you know we are all around if you need us. You are always there for others so deserve the same back. I hope the increase goes as you want it too. I think you know a lot more now about how to manage your meds so will have more success with getting there quicker this year. If I need to be on meds for life, so be it, being ok is all I care about. Ideally I don't want to need them but as an asthma sufferer I have to take daily meds for life anyway and I view it no different.

nicola1980

23-11-15, 07:01

Thanks Terry I honestly felt fine until 9pm then wham it just came out of no where, I couldn't get off the loo at one point :blush: i tried my usual calming techniques but I was just shaking and crying uncontrollably, I honestly thought I was going to have a full blown panic attack and the pressure in my head this morning is awful, I think to successfully reduce from ven you need to swap to the immediate release tablets where you can safely cut them in half, quarters etc. It is definitely one powerful mind altering med but it does work for me it's just these damn sweats and dreams, my husband had a good point tho he said as I take my pills at 6 in the morning come the middle of the night could i be going into some withdrawal causing the sweats and dreams as the half life is so short? I don't recall having the sweats or dreams on the immediate release which I had to take twice a day 12 hours apart? Hmm i don't know? XX

MyNameIsTerry

23-11-15, 07:42

Your husband has got a good point there and one I'm very interested in myself due to my experience this year. My med has a short life (Mean 12 hours) and it can range from 8-17 hours. I always used to take them about 8pm but it slipped with my sleep and then I moved it about half a day in one go so that I took them when I got to bed. For some time now I have noticed I start to feel less sedated and more positive about things after about 10+ hours. On the blip days it can be all day long bad but otherwise it is like this. Even when I've gone to my GF's for a meal and stayed through the night, a situation that has been difficult for me, the same pattern occured. Given the half life by the time of my dose I could be on 25-50% of the med remaining.

When I went on them my GP said some people take 30mg AM & PM so I wondered if this was why. But I can't seem to find anyone who does that other than when tapering on them. I was always led to believe that the whole point of my previous med, Citalopram, was the fact it spanned 24 hours but the more I looked into things since joining this place the less certain that seems as even Sertraline is just under a day. But with our meds I do wonder the same as your husband because of what I am seeing now but in my case I havce continued to have the onset side effects for years so it's not quite the same as you.

The thing is, 12 hours apart if still not sufficient for immediate release as the half life is far shorter than that. This is why I wondered if people found immediate release harder to tolerate because they were losing so much of the drug before it was time for the next dose? I've read threads on the Ven board all this year and I've seen people saying they moved to XL to avoid certain problems and I wondered if this was why?

I've just thought of something for the iron problem. GP's love giving out pills (which are little more than supplements) but your GP should know there is a liquid form they can give which costs a bit more. If this is not possible, what about a liquid iron supplement to help you? Like Spatone? I've seen pregnant women take this according to some of the posts on here on the advice of their midwives and it means non of the GI side effects because it's natural. Spatone is just mineral water really as it comes out of the rocks that way but it supposed to avoid the problems. What does your mum think of this option?

I could never take iron as it gave me constipation in multivitamins so went for the ones without.

MrAndy

23-11-15, 07:42

speak to your gp,there is no shame staying on them ,I have been on olanzapine for three years because at the time i needed it.Im in a much stronger place now thats all,you will be one day

nicola1980

23-11-15, 08:15

Thanks Mr Andy, I've read that effexor XR has a half life of 15 hours? My sister takes sertraline and she went fine 3 days without her dose as she forgot to get her repeat. I might see if I can split the XR twice a day as I do know someone who takes 225mg of it XR and she does this? I've just made an appointment to see my gp this morning about my anaemia so I will definitely mention the liquid form, I've looked up anaemic symptoms and I have got classic iron deficiency symptoms, they even state night sweats and vivid dreams? Will see what he says XX

MyNameIsTerry

23-11-15, 08:29

If you split the dose then it will mean you won't get the full dose through the time it is effective BUT I do wonder about this because it might make more sense to have a slightly less dose that is more stable in your blood plasmas as this is surely better than starting off with loads and ending up with a lot less towards the end of the day? :shrug:

If you are thinking of this route, there is another option that is more complicated but allows for easier reduction. 150mg XR plus the rest in immediate release. This means you could cut the pill. Your GP might not be happy and it's 2 prescription charges. The only real problem I see with this though is when you take that dose because it will clear out very quickly. It's a more extreme version of what you are planning to do with splitting the XR. It's only an idea for the pill cutting but part of me does think you would be getting into needing to cut the pill up and take bits throughout the day to avoid the larger drop so it's complicated.

On another thread someone said their GP wouldn't prescribe liquid iron to someone sensitive to supplements because of cost. I do question how much difference there is now knowing how cheap antidepressants are when they always tell us they are expensive to the NHS. I've never looked it up though for iron. So, if thats an issue it's worth asking if they think a supplement like Spatone would be good enough as the prescriptions ones will be stronger. But maybe it will be better than nothing at all?

pulisa

23-11-15, 08:36

I'm so sorry that you've had these symptoms, Nic. No one should feel they have to justify being on meds. I'm not virtuous because I've chosen to come off them and I certainly am not hale, hearty and out of the woods-far from it. We all support each other however we choose to get through each day. You've also got to take on board your son's recent diagnosis.

Spatone is great, absorption- wise, for anaemia. No digestive extras either. You could just have a nasty bug as you were feeling rough before last night anyway?

Please take care and let us know what the GP says? xx

nicola1980

23-11-15, 09:01

Thanks Pulisa, it's strange as I took my usual dose at 6am this morning and by 8am I felt as right as rain again just like any other morning. Just had a coffee with my husband and he said he was genuinely petrified last night as I was in such a state and felt clueless at what to do, it's now made me even more scared of this drug XX

MyNameIsTerry

23-11-15, 09:20

I think it's only natural to feel like that about it, I know I would. But there may be more gentle ways to reduce it so it's worth staying as open-minded as you can right now.

It's interesting that you responded so quickly to stabilise it. Some people who have done this and gone straight back up have taken days to get level. It really is so individual with all this stuff!

Maybe you are quite sensitive to meds? I know you really had hell upping the dose into the adrenaline level but you were on that before and didn't respond as bad weren't you? I know I've seen people on here go back on a med they have beenon multiple times before yet suffer worse than before. It's hard to know how to predict what happens when you see things like this.

pulisa

23-11-15, 11:31

I don't think anyone really knows how these drugs work. I hope that your GP appointment has helped you, Nic? You have a lot going on. It must be hard to sort out just what is going on with the physical symptoms? When my daughter came off ven she had 24/7 support from me whereas you have other duties and responsibilities to your family to take on board. The level of anxiety I address with her on a daily basis is significant-if she were in your shoes she would be unable to cope. Her situation is very different and she doesn't have to deal with the pressures that you do. Having said this you obviously have a wonderful relationship with your Mum and I hope she's back soon?! xx

nicola1980

23-11-15, 12:09

My gp is referring me to a haematologist with regards my anaemia and night sweats and dreams, he doesn't think there is anything to worry about but believes they will know more than him and he wants a second opinion. He's told me I'm not to fiddle with my medication anymore as I'm stable mentally at the min, he does think I'm under alot of stress as regards my son's diagnosis so it could be a factor of things but my iron level was 10.4 last blood test which is under the recommended level 12?
I can't quite believe missing one tablet can effect you like that but when you look online the amount of people that have suffered after just missing one dose of ven is alot, I think you learn more online about these meds than a qualified physc can tell you! I took cit for years and it was perfect for me but I weaned off and then when I tried to reinstate I couldn't tolerate it at all, it sent me loopy! Pulisa I am very close to my mum but this is the first time I've cried asking for her in a couple of years, I think that was what frightened my husband as he knew I was bad then, when I was first ill 4 years ago my mum had to sleep with me I was so scared of how I felt and I felt just like that last night.
I'm off for a lay down now as exhausted. Thankyou all once again for your support you've all helped me more than you'll ever know XX

pulisa

23-11-15, 13:31

I am not medically trained and know nothing about elimination levels of drugs but I suspect you had a significant anxiety episode last night which improved once you had taken your normal meds and thus reassured yourself this morning that the correct dose of ven was back in your system. Don't give the ven that power that it could wreak such havoc on your system after 1 day of a reduced dosage?

MrAndy

23-11-15, 14:13

best thing to do is try and get stable again,get christmas out the way and start afresh in the new year.You will be ok youve had some very stressful stuff to deal with that would rock a person without anxiety,you are stronger than you think you are
Try not to read to much online about the Ven ,as I said ive got a close mate on 50mg and he drinks and parties hard on it forgets to take it and comes on and off when hes feeling ok with no ill effects.
Keep battling away x x x

nicola1980

23-11-15, 14:53

Oh yes Pulisa I completely agree, it just scares me to death to think how potent ven is, I'm under no illusions last nights anxiety attack was purely the withdrawal but I think it played a significant part, if anything this has made me more determined to get off this med when I'm mentally ready but perhaps Mr Andy is right, I'm probably not in that place at the moment with the other stresses I have going on and your right I Google far too much but strange isn't it because my son's paediatrician actually told me to research his ASD online?? I was given no other information at his diagnosis, no information leaflet or anything, infact his appointment when he got diagnosed was less than 20 mins long! I really don't have much faith in our healthcare system what with my physc and that that paediatrician!! XX

pulisa

23-11-15, 17:54

ASD is diagnosed nonchalantly at the drop of a hat these days. My daughter was diagnosed at 2 a few days before Christmas-we had a lengthy assessment but halfway through the psych went to sleep and his colleague had to take over...Too much Christmas boozing at lunchtime...He did recover to deliver the obvious diagnosis and wished us all a Merry Christmas...

I agree in that you should get Christmas out the way before reassessing the ven. I think you need a strong support network in place to help you in the coming weeks and, as Mr Andy says, try not to expect the worse when it comes to any reduction of ven if in fact you choose to take this route.

I also think you need to find a psychiatrist in whom you have faith and trust. With all due respect a GP just doesn't have the knowledge or expertise to advise and support you in these circumstances xx

nicola1980

23-11-15, 18:50

The form filling for his diagnosis was very lengthy and in depth, I had to fill out an developmental form that took me over 4 hours as I had to give examples for every question I answered and recall from baby upwards but the initial diagnosis took a 20 min appointment, admittedly I could've asked questions which I did to some extent but when your in a situation like that you always think afterwards 'oh I shouldve asked'. We have another appointment in January and this time I am writing some notes as there is questions I would like answering. As regards to my gp I totally agree and even him himself has admitted to me he doesn't know much about ven and altho he is very supportive he isn't a qualified physc so mental health isn't his expertise. Even tho I had a tough time getting on the ven and increasing my dose it has helped me immensely but the med itself scares me and I would like to decrease my dose at least but perhaps now isn't the right time. My family is fantastic especially my parents and they have commented at the difference in my mental health and how much better I am mentally which I am, I would say I lead a normal life now, I can make plans, I go out on my own etc which a few years ago was a huge task for me, I've also managed to lower my olanzapine to half myself which wasn't easy, if it wasn't for these dreams and night sweats I would be feeling even better but I will see what the haematologist has to say and take it from there, I may even be tempted to go for a private consultation with a physc, I have a friend who pays privately for one and he is very good but very expensive! XX

MrAndy

23-11-15, 20:05

You shouldn't have to pay get your GP to refer you

pulisa

23-11-15, 20:19

It's always a bonus if a psych comes personally recommended. I'd certainly advise that you have a good think about this possibility-it could be a significant investment?

I'm not surprised that ASD diagnosis is now mainly based on form filling-in. 20 minutes is an absolute disgrace in which to assess your son face-to-face. I have never seen a paediatrician with my daughter only psychiatrists/psychologists and of course the dubious local CAMHS which was laughable and they knew they were out of their depth with her. Their head psychiatrist told me that she would never improve and that all treatment was hopeless etc. She proved them wrong-she just didn't respond to their standard package of "care". We often think back to those days and laugh at just how incompetent the CAMHS team were.

You need to get the best care for your son-it will make a huge difference to his future progress.14 and puberty is a challenging time for him but he's lucky to have such a devoted, caring Mum and a loving familyxx

nicola1980

23-11-15, 21:44

Thankyou Pulisa, my son is under CAMHS too but you only get 12 sessions then that's it but I don't think they helping at all really, what has helped is my constant battling with his school to finally get him the support he needs and now that's in place the difference is amazing in him but I really had to fight for it which is wrong. It sounds like you've been through so much with your daughter and I can't believe they said she would never improve that is absolutely disgraceful, we will do anything for our kids won't we? I will fight for all the help he needs he is my absolute world and it breaks my heart that I can't protect him from this but I can help him and support him as you do your daughter, I just need to educate myself a bit more on his diagnosis XX

MyNameIsTerry

24-11-15, 07:20

I remember reading that the budget for children's mental health was actually quite lowe when compared to adult services. Then I read a House of Commons report commissioned late last year that showed many of these local CAMH's depts were badly failing national targets. These included interviews with parents and they were not good reviews. It was very saddening to see children waiting even longer than many of us adults were. For me thats is completely backwards and not only because catching these disorders in childhood means a greater chance of success but also because these are children - they are scared and not rushing to help a scared child goes against everything a parent would believe in, and adults in general.

Nicola, it seems worth following up on the iron thing first. If there is an impact from that, it will only help you to get it stabilised before trying this again.

Please don't worry about being on meds. Peoplke don't question why diabetics need meds for life, or asthma sufferers like me, it's accepted it is needed. I see no difference with mental health. To believe mental health needs differ is a stigma issue for me because having mental health problems is not a weakness or a failing. I've been watching a programme about guys trying to get through a selection test based on the SAS one on CH4. One of the staff conducting the training left the SAS due to PTSD. Yet he is still able to do all that and is a highly trained thinking soldier. Is he weak or a failure? Absolutely not, he's just reached a limit due to his experiences and needs another path now. Thats just us, we all have a limit and once you hit it, things change. That doesn't mean we can't be successful in what we want to achieve and it's obvious you are a good mother and thats one of the most important roles in life as far as I'm concerned.

pulisa

24-11-15, 09:05

You'll be the best judge of what is best for your son anyway, Nic. You'll grow in confidence at managing ASD and will become an "expert" yourself. The main thing is getting appropriate support and understanding for him at school-especially in an academic setting where pressure will be mounting for exam success shortly.

nicola1980

24-11-15, 13:35

Thankyou both, I slept much better last night, well 11 till 5 but no night sweats yay! I've always been an early waker so that doesn't bother me, I quite like some quite time in the mornings with my coffee! XX

MrAndy

04-12-15, 20:19

How you getting on Nicola ?

nicola1980

04-12-15, 21:41

Hi Mr Andy I'm getting on much better thankyou and strangely I've had no night sweats for about a week now, I don't know whether they were caused by stress as now that stress has been sorted out I've not had them since? Weird you watch I'll have one tonight lol. I'm very tired but I think that the anaemia, I'm falling asleep on the sofa watching telly every night and that's so unlike me, I feel physically exhausted all the time and look tired too...attractive lol. How are you doing? XX

---------- Post added at 21:41 ---------- Previous post was at 21:38 ----------

Still getting the vivid dreams tho but not as bad and again that happened when the stress I was under was sort of rectified and I felt at ease, it was the night sweats that were really getting to me, dreams I can just about cope with but night sweats were terrible XX