Help please with decision about having ECT

[Jay]

Here I am again...

Still no apt from Psychiatrist.
Have rung every day for a week to see if I could get apt with the nice GP without luck, she is either fully booked by the time I get through or like the other day I rang on and off for an hour just trying to get through, then of course it would have been too late to get one. Good job I was not an emergency.
Our surgery have a ring on the morning of needing an apt policy, or you can look online and sometimes there are a few prebookable apts further ahead, so I have got fed up ringing each day and have booked online for 17th Oct which was the earliest one, I just thought book it..then at least you have one.
I am well sorted without the Citalopram, but I am still not sure about the Lamotrogine, I need help with sorting this out. And also to ask about my sleep, the itching and why my joints hurt, it even hurts to make a fist etc.

I have done things that I have not been able to do for many years...

I stood and made a cake

I don't feel frightened spending time out in the garden alone. I have done some gardening. I have cleared the flower beds and cut back the rose trees and bushes in the front garden.

I am not frightened of going upstairs alone during the day and when I get up there I am not all tired and so out of breath which rolls into a bad panic attack.

I can manage having a shower easier and more often as I am not too tired to face doing it....so I feel better about myself because of this.

I am going to write a list of jobs to work towards doing , just a bit at a time.

Yay, I have just written something positive .......it's the first time I have felt this way in many years!


Keep strong everyone, you will get there. Never give up!
Hugs to you and your babies X

[monica]

And what a positive list that is! I'm so happy that you're living and enjoying life again - it must be euphoric! Hope you get Drs advice soon - I guess it's two weeks away which isn't too long considering you're doing so well . Re meds advice maybe ask the pharmacist?

You mentioned joint pain. I had this badly when I came off antids so maybe it's linked to that? Perhaps try taking cod liver oil / evening primrose ? X

[Jay]

Hi Monica
The joint pain is being a nuisance, so I had to ring GP..well I hoped to see her as I was hurting, tired and tearful, but no she was not available. I explained on the phone about how the antids had gone and how well I was without them except for all this joint and muscle pain, I told her how I could hardly bend my fingers sometimes and how it was a deep pain right in my legs, arms neck, face and well everywhere. It feels like flu it even hurts where I touch the bed or chair to sit or lay. And it stops me being able to lay and sleep, even laying on the pillow hurts. As co-codamol 30mg were not touching it she has given me some Tramadol but these don't touch it either. I have had lots of blood tests (blood count, thyroid, infection, liver, kidneys, inflammation, vitamin D, and will see her on 17th October for results. So here I am sitting all day watching tv again.
I am telling myself that it is ok and that I can put up with it. And telling myself that it does not matter if I can't sleep as I can dose in the day. So much for my gardening etc. and the plans I had to be able to get on with jobs I had not been able to do for years.
I had been googling and had decided that I had Fybomyalgia mainly as it talked about the pain and about changes in brain chemicals and how they prescribed antids, so I thought the opposite that it had come on because of a reduction in antids....the GP says that Fybromyalgia is a name given to all over pain when they don't know what's causing it.
We shall see.
If I was a child I might grizzle at how I feel at the moment and how disappointed I am with this hold up in getting better.
I take cod liver oil caps, 5000mg vit D as prescribed by GP and another supplement for helping repair joints etc.

How are you keeping these days Monica?

x

[Jay]

It's me again..

I am in bothers with everything. I've gone backwards.
The aches have really got hold of me and I can't understand it. One minute I was coming off of the antid's and feeling well, the next I get this aching all over which is not going away and is taking me down hill again. It keeps me awake as which ever part of me touches the bed hurts and throbs more, and I do not know what to do with my hands. Even my neck, face jaw hurt as well as the rest of me. I did manage to sleep for a while sat up on the sofa yesterday afternoon with my hands resting each side of me on pillows. Pain killers are a waste of time as the Tramadol, paracetamol and Naproxen do nothing so I get no relief from it. And of course my mood has plummeted.

Any ideas anyone what this could be? Where these aches have come from, or of course what could have been covered up by all the antid's, or what it could be that has just happened and just happened to coincide with the cut out of pills?

I have to wait till Monday to see the GP. I feel I could cry as I write this.
Yesterday I got it in my head that I had died, and I nearly asked my OH who is off this week if that is what has happened. It all seems so unfair....but any illness and the way you girls struggle with PNI is not fair.

The other day I re-read the copy of the letter which the Psychiatrist had written to the GP, it defiantly said that they were going to send me an apt in 4 weeks time, which following the original apt on the 15th July should have been mid August! So I set about writing them a letter about this and explaining that as I had been left on my own with all of this, how I had had to mess around with my pills and doses myself. I told them all that had happened to me since I saw them, and how lost I was since I had not had an apt to see them and could never get an apt to see the GP that I trust and like best, and I ended up saying....Please can you tell me if it is you or the GP who is suppose to be looking after me? And asking for them to reply to me. So off I went down to the place where I had this apt in July. The drippy girls on the desk seem to have never heard of the Dr I had seen, and when I asked who would be looking after me now they shrugged their shoulders and kept asking me to spell her name. I told them I had written a letter but I did not know who to address it to. They looked up my records when I said that I had not heard from them about a follow up apt. They confirmed that my records were open and I was not discharged, but there was nothing there that said I was due another appointment so the girls then just looked at me. So I set about asking again, I explained that I knew that the original Dr I had see had left and that I should have had an apt with someone else, but did not know who.....they just stared on. So I asked to leave my letter for someone to read, they asked me again what the letter was about and they looked very vague, I asked who I could address the envelope to and they just took it as it was with nothing written on it. I have not heard back from them yet.
I know that the NHS is busy and that there are cuts to mental health, but mental Heath is important and people can die if they get desperate, I am glad I have family and am not in a desperate state.

Sorry that I am ranting on and on. I've been awake most of the night and am just fed up and feel like I am jet lagged so my head feels all spaced out and buzzy. And my jaw and face feel all sort of stiff, my tongue is also so sore with ulcers and my hands are not wanting to bend and everything hurts and is getting me so down. I now am crying and so wish I had pain killers that worked or even just took the edge off.

Thank you for listening and giving me a place to come and for just being there.
X

[monica]

Don't apologise! That's what we're here for...to listen and support.

Things sound crappy for you. You definately need to see someone. I know when I feel physically pants my mood plummets. In fact there was some recent research that suggested a direct link between inflammation and depression....

Re joint pain I have no idea what causes the joint pain but I had it after about a month of stopping antids. I took evening primrose oil and vit B and it did go after a couple of months I think. I would be like a penguin sometimes hobbling .

V unprofessional of those Drs assistants. Get ur gp to chase it up? Keep talking - you're doing brilliantly - I know it's tough atm but u should b proud of urself x

[Jay]

Thanks Monica
Well I I don't seem to sleep anymore, well not in my own bed.
Example ...of what nights are like now .I started off last night in my own bed with OH...could not settle and seemed wide awake so tried listening to music while laying in bed. Hated it and fidgeting started, went down stairs to sit in the living room...wide awake but very fidgety..watch tv. Decided to lay in spare room thinking that I would have more room to fidget in 3' bed on my own.....could not settle. Got up hungry watched a bit of tv..after a couple of hours I took a 5mg diazepam....and went back to own bed with OH. No sleep feel desperate fidgets are desperate I might just as well as had a glass of water for what good the diazepam was. Decided that I defiantly needed sleep tonight (the night before I only had about 1hr sleep, so took another Lamotrogine (did not seem to care by now!) and I also took a 100mg Trazodone tablet which was the pills that made me feel poorly but at least they slept me and I felt so desperate. Sat down stairs watch tv for to let pills work, suddenly woke up with dreadfull panic attack ( that was the Trazodone which was proof to me that they were what had made me so anxious for many years), decided to get in spare bed and after a while fell asleep...got about 3 hours sleep. Am dreading tonight already!!
X

[monica]

The insomnia - It's a vicious circle ! But lack of sleep is horrendous - I'm prone to it too. Have you tried any herbal concoctions? I used to put a couple of drops in s tissue placed in pillow case - it did seem to help . Also deep breaths through stomach . Perhaps listen to some relaxation videos on you tube? Hoping tonight is betterx

[monica]

How did you sleep last night ?

[Jay]

have been to see GP, she is so nice I have not felt safe with a GP for a long time.
We chatted things over. The blood tests were all ok and she thought that all the aching was to do with coming off of trazodone, also she talked about how depression gave people aches.
So we decided that I would try Sertraline, the main side effects so far are a head ache, itch and fidgeting, upset tummy, and a bit of panic attack, I've had worse but I would not want it permanently, I hope that after a few weeks this settles. She is going to write to the psychs to get me an appointment , I am wondering if I might accept their offer of counceling or CBT again to see if they would help me learn to live again.
I finished talking to GP and went to leave and collapsed on her floor, so we had alarms 3 Gps and nurses all in the room too, it's a long time since I have done that. Collapsing use to be a regular thing when my anxiety and PTSD was bad. So I am now both very frightened that it may start up again, my body would not cope with lots of falls again, and also very cross with myself for it happening even though I had no pre-warning. I nearly collapsed again in the chemist, which was too busy so I left, then nearly went down outside and this little old man who looked in his 90's was trying to get me to a seat, then after that there I sat in the car not knowing how to get home......after 15mins I drove knowing I shouldn't do but I just had to get home. That night when not sleeping I was terrified about this collapsing stuff and I was starting to have PTSD flash backs which scared me so much as have had them under control, so I went downstairs and cried and cried and was having panic attack after panic attack so at about 3am I was so desperate that I rang the Samaritains and eventually calmed down by talking to this lady. I have not run them for many years.
I've slept in my own bed for some of the night over the last two nights, it's stupid that I get frightened to go to bed sometimes which gets me sometimes.
So we shall see what happens now........
Take care everyone
X

[monica]

Hi

How are you doing? Hope the sertraline is kicking in also your joints aren't as achy.

Poor you re collapsing. Hopefully it is an isolated incident . It's no wonder you're worrying about it, but it doesn't mean it'll reoccur.

Well done in calling the Samaritans. They are fantastic and there when u need them? If it helps calm you down and makes you feel less scared then it obviously works.

You really are amazing Lynnex

[Jay]

Hi here I am again
It's 4.20am and here I am still awake!! Plus At 3am I drank 1/3 bottle of wine with hope that it might prompt sleep, but NO.
I have given up on Sertraline I hardly slept plus I got that Akathasia (this might be spelt wrong) it's where you can't keep still. I had this for the last 5 months of pregnancy so I have had it before. I have been having trouble when taking the Sertraline and when tired, so nights really and at odd times during the day. This having to move is literally not able to sit or lay still, so it's rocking from foot to food, trying to get cold, etc. And it goes on for hours until I am so tired that my body just gives up. The other night I sat on the cold leather sofa rocking and rubbing my legs as a distraction from the hell it gives. I have had it now and again anyway and I usually take diazepam and I know then in 1/2 hour it will stop, but now I am not so drugged up with antids diazepam does not seem to work so I feel completely stuffed.
So I have gone back to Citalopram and here I am not sleeping at night, but feeling drugged up and jet lagged all day.
I have a GP apt next Wednesday, and I still have not heard from the Psychiatrists even thought the GP wrote to them 3 weeks ago to ask them what they are playing at! My promised apt for August just didn't happen...buggers!
So I am fed up, really fed up. I don't feel depressed just fed up. Over the years I have learnt to put up with anything really, and I am plodding on with this.
I have spent the past two days reading up what new antidepressant I might like to try to manage to get some sleep, BUT I have no idea, the side effects all seem grim, and because I can't think it up I just need the GP or psychiatrists to sort me out. I have not slept without pills for 24 yrs. I usually get worse depression between about january and April so I have that to come and my daughter emigrates to Canada 21 January, soooooo problems ahead.
At least there is Christmas films on tv in the night and they are keeping me going. I suppose I should have done my ironing, but sod that!
My niece has just had a baby boy so I am looking forward to visiting.

Well keep going ladies you will get there, it just takes a while to sort out. So take care and look after yourselves.
Xx

[monica]

Insomnia sucks big time! I think your frustration is 100% understandable. That's with the psych and the appts, with the drugs having such an effect . Also for the first time in many years you've had a proper taste at feeling good and getting your life back.

Perhaps make a complaint to the psych in writing? I had horrendous sciatica several years ago and my referrals to consultant and mri got lost! Eventually I called and Magic appts were found very quickly for fear of a complaint I think. Could you do that ? X

[Jay]

Hello me again
Well I've had my GP apt with the lovely lady doctor who makes me feel safe. She offered me sleeping pills...Zopiclone and last night I took one and slept right through to 8.30am, it was one of the best sleeps I have had in months, she gave me 28 and said to take them for no longer that 2 wks at a time because of Dependancy but my plan is to us them when I need a top up like I did last night.
We talked about antids, she asked if I had heard from the Psychiatrist, but again the answer is NO, I told her that I did not care about them anymore!
So after looking at all I had had before the GP suggested Duloxetine, it is antid and also used for nerve pain for diabetics and for water works trouble she said that it is often one that is over looked. So I took the Zopiclone last night and felt good his morning, then took the Duloxetine this morning and had a good day, and I had energy and jobs did not feel such a struggle. I have fell asleep for an hour this afternoon, but so far after one day I am ok and feel relieved. Fingers crossed please for things to stay that way.

Keep strong girls there is talking therapy help and pills that will work for you, it just sometimes takes a while to sort things, different therapies and pills work different for people, bare with it all you will find the right one for you, so you can feel well and enjoy your babies. Xx

[monica]

How has your day been, Lynne. So pleased you've slept so well and that's instrumental in feeling well. Good luck with the new antids - really hope they make a positive difference to how you feel x

[Jay]

Hello
Well my update today is that things are good, I think I have turned the corner....yay!

I now sleep (and in my own bed instead of the sofa or spare bed) and don't get up so much in the night (last night I was only up for an hour, but did go back to bed then and slept). I still fall asleep in the day and sometimes for a couple of hours, but I do not have to go to work so I don't worry, the sleep is all restful and I at long last I feel at peace. I am not spending every minute of my waking day worrying how to survive and how to get well.

I feel more alive after all those years of being so unwell and the problems I still have left are completely liveable with. I still don't do much and don't seem to have got going with things and especially house jobs yet, but who likes them any way! I suppose that I have to slowly get use to a different life.

I wish that I had not had been too anxious and lost and could have asked for help sooner, I just thought that there was no help, that there was nothing more anyone could do to help me, lI so thank the personal health trainer at uour surgery for giving me a push to ask again and for telling me which GP to go and see, and I thank the find of the nice GP that I trust and wish I had found before who picked up that I needed some help, and for the nice SHO temporary Psychiatrist who listened and made me feel at ease to talk about my long list of problems, and she did not think that I was a hypochondriac like I thought she would.

Talking of help ......I at long last heard from the Psychiatrist people, it was a letter to say that I had not attended my apt on 11th Nov so they had discharged me... I had never received the apt letter!! So I did not know that I had one, so I am glad that the nice GP had sorted me out anyway otherwise I would of had a problem.

When I think of how a few months ago I had sat in a church (that was open for people just to look and for prayer) and I was in there alone with my golden doodle dog in my arms, I had my head buried in her curly hair and I was crying and asking for help and for some peace, (it's making me cry thinking about this) and asking how on earth I was going to be able to spend the rest of my life in the state I was in. now I am thinking that I must go back and say thank you, I am not usually a church goer only Christmas and weddings, christanings etc.
I am so glad I found this inner strength to try again, to ask the GP for help again, to not be frightened of medical people and think that they will all hurt me like the hospital doctors had all those years ago which had plagued me since the PTSD had started up again 10yrs ago, I now feel at peace when having a GP apt. Well I just feel at peace full stop! I have no more panic attacks.
I do have my usual extra winter depression to go through (unless these new meds stop this...oh I do hope so).
I will let you know how I get on.

It is so not easy to start from the bottom of trying to get well and I know that you girls with your babies are struggling, do go and ask for help. Back When my daughter was about 4 months old I went to the GP about something else and my conversation changed to my PNI problems, she put me on antidepressants, which I did not want to go on and I felt a failure, but once they kicked in I then slept had more energy and coped Better. Well try it, please don't suffer. Do come here for support, talk to the other mums make friends on the site with them. At the time that I first got help from the site we use to talk about our problems, then go down the list of the few regular users and write encouragement for them, it was so good like this to find that you had a few replies, it lifted you and supported you and felt you were not alone.

Thanks for listening to me.
And thanks to Monica who is there and replying when girlies need help,
I send my love x