Lived Experience Forum

[Doglover]

A bit more about what makes me think ingredients in the meds are a problem... 

For a long time I've been hyper sensitive to stimulants - tea, coffee, coke etc. If I had them on a regular basis I would get anxiety, insomnia and racing mind. I didn't make the link at the time, it wasn't until I looked back and realised that each episode of anxiety/insomnia I had (well before diagnosed with any mental health issue) was at a  time in my life that I was regularly consuming stimulants. I also found that I was sensitive to certain stimulating foods like chilli, spices, and even salt. I would get what I referred to as bad head (racing thoughts) and would have a bad night's sleep. In latter years, still before any mental health diagnosis I had to have regular iron infusions. Sometimes these were done using a saline drip, other times by direct injection, but both methods contained salt going directly into the blood stream. After each iron infusion, I would get an extreme episode of anxiety and insomnia as well as the severe body burning sensations that I have now. These episodes were awful but went away of their own accord after about 5-7 days. I have also had times in the past as I mentioned where I have taken medications that have had that same sort of stimulating effect (racing mind, bad sleep) which would go away once I stopped taking them. 

In the lead up to me getting sick about 14 months ago I had an iron infusion which resulted in one of the severe anxiety/insomnia episodes. This went away after about a week and I was totally normal again for a week. I then without realizing was using a stimulant (American or siberian ginseng, can't remember which) and I got anxiety, insomnia, racing mind and involuntary leg movements like I have now. It took me a while to work out what it was but when I realised I stopped using it. The problem was that it takes a while for the symptoms to settle down and becoz it came so close after the episode with the iron infusion, my husband decided that I had lost the plot and took me to the local mental health hospital. From that time on I have been on varying types and amounts of medications and have consistently got worse and worse. All the medications contain sodium which I know acts as a stimulant for me (even if I had a high sodium meal I would get a 'bad head'). Also some of the medications act as adrenal stimulants which is amajor no no for me. So my history leads me to believe that it is ingredients in the medications that are acting as stimulants and the reason why I am so bad is becoz I've been taking so many for so long it's just stimulating my mind and body more and more. Which also explain s why nothing helps me get better but I've only got worse. Unfortunately the medical profession, and unfortunately my husband, are absolutely adamant that the above is all a load of rubbish and completely dismiss my experience over many years. My husband actually gets really angry if I mention it and says that it is these beliefs that are stopping me from getting better (thus making it my fault that I'm sick). So I'm rly between a rock and a hard place. If I decided to come off the medications, I would have to be really careful about what I ate as it would defeat the purpose of thingsi if I ate things that I'm sensitive too, and my husband would not be supportive of that. Also if I came off the meds and got worse, my husband would take me straight to the hospital, who would then put me back on/increase meds. So it's a really difficult situation. Sorry to be so long winded, it's just nice to be able to talk to someone about it becoz there is no one in my life that I can talk to becoz nobody believes me, the psychiatrists have made sure of that. They actually told my husband that I needed to cut off all contact with anyone that did believe me in regard to these things so I lost 2 friends, people in my support network as a result. My mum was also inclined to believe me but they got to her and told her how imperative it was that my family were on the same page as them so she changed her mind. 

Hence it has been, and is, a very very lonely road becoz there is no one I can talk to and the people in my life blame me for being sick becoz I believe these things.

Sorry again for such a long post. Thank u for 'listening' eden1919, I really appreciate it.

[Eden1919]

@Doglover  That is awful that they made you cut contact with people no one should have the right to chose who you do and don’t associate with. Like you my doctors did not believe that the meds where making things much worse for me and insisted I stay on them which genuinely nearly cost me my life. But I was lucky enough to find a psychiatrist who would at least let me try and was more open minded. I was on many different meds at different times but I guess the last batch was about 3 psych meds and 2 other ones I have been on the addictive kind that I believe you are speaking of for a while and did have to taper off those but if I am honest and while I am not recommending this I went cold turkey off the others but I am lucky because I don’t often get withdrawal symptoms. It has taken about a year to feel fully clear of the meds and their bad effects and things can be a little chaotic at first but I just made a commitment to myself that I would give myself at least 6 months to a year off them to see if it was better. It has been hard but I can at least think again and I don’t feel so reactive like I am about to explode from the tiniest things. I have been on antidepressants, mood stabilizers and antipsychotics plus anti anxiety stuff. 

If you think salt is an issue for you perhaps try a low salt diet while on the meds and see if it helps even a little they you may have an idea if you are on the right track. I really feel for you people can have allergies and reactions to all sorts of things. My family member is allergic to fruit and vegetables and the sun! They also haave very weird reactions to things. I am sorry you are being so dismissed I find it weird that the doctors won’t listen to you when clearly their treatments are not working and it wouldn’t  hurt to at least consider what you have to say about your own body. 

[Doglover]

" I find it weird that the doctors won’t listen to you when clearly their treatments are not working and it wouldn’t  hurt to at least consider what you have to say about your own body." I couldn't agree with u more @Eden1919 .I'm the one that has experienced these things throughout my life so to just dismiss it as a load of rubbish I think is wrong and damaging. It's been very damaging to my marriage bcoz my husband has 100% taken on board what they have said and is blaming me for the state that I am in becoz I continue to believe what I believe. He is of the opinion that I am so sick becoz of what I am believing, which puts the blame squarely on me for being in the terrible state I am in. He had another go at me about it tonight. So I feel totally trapped. I don't believe im going to get better without getting of these drugs, I don't know if it's even possible for me to get off these drugs, I don't have my husband's support to do it bcoz he doesn't believe they have anything to do with the state I'm in and as well as that, if I don't have my psychiatrist support,which I don't believe I will, im stuffed bcoz our only income is my income protection insurance and to get that, my psych has to fill out forms every 3 months and one of the questions is whether or not I am compliant with what they have prescribed, both medicines and other interventions and if I'm not- no money! No income! So it's just a rly crap place to be. 

Re cutting contact, yes that is another rly difficult and damaging thing they have done. Basically my husband forbade me from having contact with these 2 ladies bcoz that's what the psych said he needed to do if I was to get better. Well that was over 6 months ago and I'm worse, not better, so that clearly didn't work!.

You are lucky not to get much withdrawal symptoms,I am the opposite unfortunately. That's one of the reasons I am so scared about trying to come off the drugs, I just don't know what will hapn to me and how bad things r going to get. Things are alrdy worse than I can bare so I can't imagine having to cope with them being even worse still. I'm so close to ending up back in hospital as it is, my husband nearly took me there tonight, but they've alrdy said they can't help me, rather I've got worse from both of my hospital stays. I believe that's bcoz they've put me on more drugs but of course no one else believes that. I just feel so trapped and just don't see a way out. And I totally do not want to keep living life like this - it is absolute bloody torture!

How did they find out about ur family member being all ergic to fruit, vegetables and the sun? While I'm not allergic to the sun I can't bare the heat. I used to love summer and going down the beach and stuff, but now that I have this burning  sensation throughout my whole body and head, I just can't stand the heat. I have to have the fan on most of the time even when it's not that hot. I'm just burning up all the time.

How did being on the meds nearly cost you your life if u don't mind me asking? I see the same potential here if something doesn't change very soon.

I also feel ready to explode at the smallest thing. I feel so agitated and anxious and am just 'climbing the walls. Everything annoys me - noises like traffic, planes, trains, keys, doors opening/closing, dishes, even talking or singing or laughing just grates on me so bad I can't handle it. And I am so dysfunctional now,I can't even handle dealing with the mail, paperwork, bills, self care, housework, making meals, nothing! I'm so dysfunctional and it is so depressing bcoz before this happened I was an extremely high functioning person. It just breaks my heart. The pain and grief of what I've lost,on top of the physical and mental pain, torture and torment is just unbearable.

Anyway, I've gone on long enough. I really appreciate u 'listening' eden1919. I hope I am not burdening u too much with my problems. Thanks again.

Take care

Doglover

[Eden1919]

@Doglover It is ok you are not a burden, it really frustrates me that the mental health care system here doesn’t do more to include the person suffering in treatment decisions, it can feel like you are being bulldozed often and drs always assume they know more about you than you do even though they cannot test for anything but still assume they know how you feel more than you who has been living in those feelings for probably many years. 

The money situation does does make things very difficult for you. My family member has a lot of chronic health issues and has many specialists drs and has had a lot of tests one of the allergy tests was a process that lasted months and the sun allergy is able  to be spotted because they get very specific symptoms. What you describe sounds a lot like a strange nervous system reaction. Maybe have you tried seeing a doctor that isn’t in the mental health field. Surely at this point it couldn’t hurt you are already struggling and the psychs aren’t helping... 

[Eucalypt]

Hi @Doglover and @Eden1919 
I've read a little of the supportive exchange here between the two of you here. You are certainly not alone Doglover in having concerns about side-effects from your medications. Sometimes it is difficult to distinguish between side-effects and other health issues / allergies that one may have. Although it's frustrating to feel that your concerns are not taken seriously by all of your treatment professionals – as Eden1919 says – it's important to keep trying until you find professionals who hear your concerns and that you feel you can work with. Sometimes a focus on mental health issues can mean that one's physical health needs are neglected (both by oneself and by health professionals).

You might be interested in a short factsheet about looking after your physical health while also managing your mental health issues. It's on the SANE website here

All the best,

[Doglover]

Thanks @Eden1919 . I cldnt agree with u more. I'm the one that has been living this and know what I've experienced and  when but they r not interested. They are so adamant that they know more about my body and my experience than I do, and hav even turned my husband against me in a way bcoz he is on board with them he basically sees what I am going through,which is having an untold negative effect on our lives, as my fault. This affects the way he treats me and his attitude towards me in a major way. U mentioned the medication situation for u very nearly cost u ur life. Do u mind me asking in what way? Only answer if u are comfortable to. I feel like they are playing with my life here and it is a life or death situation for me but nobody is listening. If it is the medications, and I can't get off them, then things r not going to go well. I am scared I am going to end up in a mental institution or some mental home for the rest of my life bcoz I'm just getting worse and worse, hav bn for a year, and nobody's getting it. I spoke to my neighbour today because she heard me crying and came to see if I was ok. We hardly know each other, wev probably only spoken twice before, but I ended up just pouring my heart out and telling her everything. She totally got what I was saying about the bad effects of the meds. Her sister was put on a cocktail of meds for anxiety and depression and kept on getting worse and worse. She tried to tell them that the meds were screwing with her brain and making her suicidal, which she wasn't before, but they just wldnt listen and kept on giving her more meds. The very sad end to that story is that she took her life. But she was not suicidal before she went on the meds. My treating team know that I have suicidal thoughts, images and urges every waking moment of the day. I didn't have that at all when I first started having depression and anxiety. It started after they started me on a particular drug that has a warning for suicidal thoughts and behaviour.  I told them about it at the time but they dismissed the idea that it related to the drug, even tho it has that warning. So now I've been on it for a lot longer, the thoughts etc are much worse than they were at the beginning. Maybe if they had have listened to me at the time and taken me straight of it I wldnt be in the mess I'm in now. They r playing with people's lives. They r just lucky that I don't have the guts to take my own life, as much as I want to, becoz if I did I would write a note that wld lay the blame squarely at their feet. It's just not right that they just completely dismiss the patients concerns and experience. I'm sure they don't all do it, but the psychs in my team do.

I had that apptment yesterday with my psych and spokke to him again about my concerns about the drugs making me worse and he said that I was delusional and that many of the psychs there wld b putting me under the mental health act! That freaks me out. I've gone from being completely normal just over a year ago,had an iron infusion and had anxiety/insomnia/internal burning for 1 week then it went away and iwas normal again for a week. Then I unkowingly used a stimulant and those sy ptons came back. It was then that I went to the mental health unit and I have done nothing but get worse and worse since then. In the earlier days I cld still function, ca e for myself, do meals and present myself well as I always used too. But things have got steadily worrseand now I can't do any of those things. I can't deal with life at all and I was not like that at the beginning of all of this. It makes me so angry and frustrated bcoz my life has been destroyed and they're just not listening to my concerns. I'm so scared where I'm going to end up. It's not looking good at the moment that's for sure! .anyway, I've gone on long enough. Thanks again for listening Eden,I appreciate u.

Kind regards.

Doglover

[Eden1919]

@Doglover  as for the meds they were causing so many side effects that i couldnt tolerate that i had decided firmly that it was either off them or leave this world. it is kind of hard to explain though. i dont really know what to say to help. i really do feel for you though it is a horrible situation you are in at the moment. the only thing i can suggest is going to a different doctor even if they are a psych you are entitled to a second opinion by law. if you do manage to see a different doctor then be careful how you word things so they know you are being genuine and that your concerns are valid so they actually listen. 

[Doglover]

That's exactly how I feel @Eden1919 . I want to be better or dead. But I haven't got the guts to do the latter, but that's all my brain thinks about all day every day. It's not even like I'm thinking it on purpose, it's just there all the time. I just can't deal with it anymore! It's absolutely torturous.I've got to get  off these meds but the problem is that's going to take time and I dont know if I've got time. Things r getting worse by the day. I'm really scared what's going to happen to me!

@Shaz51 Thought I would tag u in this thread again to keep u posted. 

[Doglover]

Thank u for ur support @Eucalypt . I'm not looking after my physical health at all. I'm eating ok but apart from that I barely get out of bed, even tho I can't rest or relax bcoz I'm so on edge and becoz of the thoughts that r in my mind all the time. I just can't face life. 

[Shaz51]

thank you @Doglover , for tagging me my awesome friend

I am here for you ,and how are you today xxx

@Eden1919, @CheerBear 

thank you @Eucalypt , @Whitehawk  for your continueing help my friends xxxxx