Lived Experience Forum

[Meowmy]

@Doglover @Thanks for support. Getting the right meds take time. Keep faith is important.

[outlander]

i can only give you my experiences @Doglover however everyone experiences things differently.

Some of the medications ive been on, had side effects that didnt go away but ive had other medications that ive been able to persevere with and they have eased or ive been able to manage them with other medications such as anti-nausea tablets however if im finding i need more medications to reduce those side effects then its not worth persevering with or staying on.


did you notice the side effects only when you took them at first say for a few hrs and then it eased or does it continue through the day as well?

[Doglover]

Its constant @outlander , doesnt go away. And its basically an exacerbation of existing symptoms that im finding virtually impossible to handle anyway. Like the 1st 2 that i only took once each made me feel like i was on speed (not that iv ever done speed but what i imagine it would be like), heart beating out of chest, everything racing, panic, cant sit still, anxiety even worse etc, and the other one which i took for 2 days, made both my head and mind even busier and racier than normal, along with the terrible burning sensations. So its basically making all the horrible symptoms even more intolerable than they alrdy are! Just doesnt make sense!

All my symptoms are non stop, they dont go away, which makes it vey difficult to bare. Even my sleep meds arent working very well so i am awake on and off throughout the whole night so dont get a respite then! Something's gotta change, and fast!

[outlander]

wow that is quite difficult @Doglover
if stopping them is what you think is best then perhaps your right. when do you see the psychiatrist next? if its not for a few weeks it might be worth ringing or emailing the practice/them and let them know your getting some rather uncontrolled side effects and you have stopped them (if thats what you decide to do)

[Doglover]

Yeh i have stopped them @outlander , only took it for 2 days. Pdoc appt not for about 3weeks so will have to ring them on monday and arrange for earlier appt. Problem is, i dont have any confidence that the outcome of that appt is going to be any better! Will explain more in next post.

[Doglover]

Hi to all who have supported me on this very difficult journey since i recently joined the forum - @Zoe7 @nashy @BryanaCamp @CheerBear @Ali11 @Shaz51 @Meowmy @outlander @eudemonism @Appleblossom 

I have mentioned to a couple of you that there is a particular reason why i am so scared that im never going to come out of this (over and above the normal fear that i think most of us experience along those lines). 

My history has been that apart from some phobias which have restricted my life, i have never had issues with anxiety/insomnia as i am having now except under 2 specific circumstances. I first noticed extreme sensitivity to stimulants (tea/coffee/guarana/ginseng) approx. 25 years ago. It took a while to connect the dots but when i had these things, i experienced EXTREME anxiety, EXTREME insomnia, terrible burning sensations thoughout the body and head as previously discussed on this thread, hyper stimulated head (physically) and mind, dry mouth, nausea, fear/panic, upset tummy, frequent urination. This happened at 3 seperate periods in my life that i can think of in my 20's. I finally realised i was hypersensitive to stimulants and just needed to stay away from them. When i stopped having the teas/coffees, the symptoms subsided. 

Well, in more recent years, i have had to have many iron infusions and after every infusion, i have experienced the exact same symptoms, usually for 5-10 days. It is horrendous but in the past, i have rode it out. I believe i am hyper sensitive to sodium (as a result of reaction to infusioms as well as the fact that when i eat high sodium meals, i dont sleep well, i get what i call a 'bad head' and if i have sodium several days in a row, i will start to develop anxiety. So here is my dilemma. What im going through now is exactly as i described above and it started last year after an iron infusion. This time i just couldnt ride out the symptoms so sought medical help. From that time, ive been on various medications (nothing which has really worked) and they have all pretty much contained sodium. So i had the big hit of intravenous sodium with the iron infusion, and every day since its been added to. And here i am 6 months later, not being able to tolerate multiple different medications, no better of than i was before, taking meds for sleep which worked for a little while and are now working less and less, still not on a long term med for anxiety, and still experiencing all those extreme symptoms. The problem i have is that nobody believes me! I know it must be hard for medicos to believe because it doesnt rly make sense, but its real! Thats what happens every time! And i am so so scared that i am never going to get better because they are never going to take me seriously and will continue to treat me with meds that have sodium in it (which most do). So hence why i am at a total loss, at my wits end, with no hope that anything is going to change, and knowing that i cant keep living like this. I have thought of bringing my appt forward (which i need to do if im going to keep seeing current pdoc thru the public system) and literally begging them to take me seriously, or at least humour me and not prescribe any meds with sodium in it (or meds that increase adrenaline because they are hyper stimulating to me). But i just dont think they are going to listen. And im getting desperate! The only other option i can think of is to get admitted to hospital and let them  just drug me up to the eyeballs so i wont know the difference - but even that wont work long term coz id have to come off them eventually and id just be worse off! And im not convincced theres not other excipients in the medications that dont agree with me, so feel trapped. Am i just crazy like they think i am? They all tell me its not possible but the correlation for me is so strong that i cant not believe it, i just cant. My husband doesnt believe me and says as long as i keep believing that im not going to get better. I have 2 elderly lady friends that believe me and thats it. So as u can see, i have extra extra concerns about not ever getting on the right meds and getting better. Does anyone have any words off wisdom? I just really need help! Thank you.

[Zoe7]

You need to continue to tell your GP/pdoc what you are dealing with or change to someone else that will listen @Doglover There is obviously an issue with different meds for you and that should be taken seriously.

[Doglover]

@Zoe7 @nashy @BryanaCamp @CheerBear @Ali11 @Shaz51 @Meowmy @outlander @eudemonism @Appleblossom 

Following from below, as mentioned, i am currently in the public system and really not in a position to go private. I am interested in people's experiences with both public and private, and whether any of you have felt the need to go private because you werent getting the help you needed publicly and if so, if going private was beneficial for you. My darling mum has offered to pay for a couple of private sessions, and we could probably come up with the funds for maybe 3, but im just wondering if this is worthwhile given all my issues and im concerned that i would need a lot more sessions than that and so i would be srarting something i couldnt finish. Anyone have any thoughts between public and private. Have ppl had success in the public system? Keen to know your thoughts and experiences.

Thanks again everyone!

[Doglover]

Ive tried telling them so many times @Zoe7 . My gp just gets angry now if i bring it up (shes leaving the clinic but the doc i was probably going to see instd doesnt believe me either - hav seen him before). I have seen multiple pdocs in the public system and not one of them has paid it the slightest bit of credence. They all say its impossible, we all have sodium in our bodies, blood etc, and its all in my head. 

Hence why iv bn saying i just dont have the support i need - the ppl i need supporting me just dont believe me. I feel totally unsupported by my whole 'team' which i rly wldnt call a team. 

So you can see why im so scared that this is never going to change!

So you think i need to be changing my gp/pdoc?

Do u have any thoughts on my subsequent message?

Thanks @Zoe7 , youre a gem!

[Zoe7]

@Doglover I have done a combination of public and private. My initial psych sessions under a MHCP were public and then when they ran out I could access more session through my private health insurance cover. The rebate is minimal but my psych also provided her service at a significantly reduced rate.

My pdoc is under the public system so I have had to pay the gap fee for those sessions. Currently those sessions are included with my DBT sessions as a day patient and that is under my private cover. Under that cover I pay a one of hospitl fee for the year and all of the subsequent DBT sessions and pdoc appointments are then covered.

I don't think it matters too much whether you see someone publicly or privately - the important thing is the relationship you have with your psych and.or pdoc. Finding that person(s) that will listen to you and then actually hear what you are saying is the key.

As I have discussed with you before, it took nearly two years for me to find medication that worked after many different med changes. different dosages and many side effects. Some of those side effects were very severe and set me back a long way. I do not have the same serious reaction that you seem to have to meds but all have had side effects - the most common have been headaches and blood pressure fluctuation. Some of the earlier meds we tried causeed fainting and I had a few falls from that. Others caused dry mouth, racing heart, substantial weight gain and lethargy to name a few. I currently am on half a dozen different meds - some to counteract the side effects of others but it is working now for me and the change has been substantial. It was a long road to get to where I am now but I also had a support team around me that I trust and could talk to very openly about the meds and the effects on me. At no stage have I felt that they have not listended like you so I am fortunate to have the support team I have. I think having that kind of support has been just as important as getting the meds right.

So in answer to your question - public or private - I don't think it matters - what matters is that they listen, take into consideration what you are saying, believe what you are saying and are open to finding the right meds that work for you. Alongside that is therapy that works for you and can help you tackle the issues you are having in your life.