Lived Experience Forum

[kristin]

Me again.

Wise of you to talk to them about MI, well done. It can be a hard conversation to have, but much scarier and more destabilising for them if you don't - especially if you ever need hospitalisation.

I managed to hide my depression from mine somewhat when they were little. Since I've had the b-p diagnosis (4 years ago, suffering at least 35 years) I've told the older ones around the time they hit their teens. They need to know to watch out for themselves and each other. I also needed to explain that drug experimentation is OUT. I told them that it was like playing Russian Roulette for most people, but for us like playing it with a fully loaded gun

Have you seen that the Black Dog insitute and Sydney Uni are doing a longitudinal study on siblings & kids of people with bi-polar? Not sure if you are interested, but the youngest that they will include is 12yo's.

Both my 17 yo and my 13yo are taking part. I don't think either of them have it, but if they do then I hope any early warning signs might be picked up now. Part of what I understand the study is looking at is what builds resilience where there is a genetic predisposition.

I beat myself up for a while about my tainted genes, especially over my 6 yo. I have a theory that it is interaction of heredity and environment that leads b-p to be expressed. (My own family of origin is a case in point - 1 parent and both my siblings have/had b-p, growing up was a nightmare of neglect and abuse.) I've also come to the conclusion that I can't undo my kids genes - so I need to focus on helping them be resilient in the face of all life's challenges, including teaching them to look for help when it's needed and be very bloody determined until they find it. 

Sorry I didn't mean to have a rant. I hope that all made sense!

Kind regards,

Kristin

[Uggbootdiva]

@kristin totally get it. And as I said symptoms were not that bad as to have to go to hospital.

We too have had the taking drugs talk. Good to put in their head while young.

I wasn't asking what medication people were on only that perhaps I was ignorant as to how bad the withdrawal symptoms are for others.

I'd I was pooping and vomiting and psychotic and afraid of consequences I would TOTALLY go to a hospital public or private. My thing is I just get soo soo bored at about day 3 when admitted.

I am ranting a bit too, serious mania at the mo. Have asked husband to take credit card away. Trying to avoid talking to Co workers and clients as I am speaking so fast and coming across as v. Anxious annoyingly nit picking. It's hard cause he's overseas right now but home soon.
Sigh. Slept 2 hours last night.

BUT Christmas shopping nearly done, all the laundry up to date, kitchen spotless and no study done (exams next week)

[ivana]

Are you being given excessively high doses or normal doses ?

Do you have migraines in general?
Have you asked your G.P for something for them (eg:triptans) or seen a Neurologist?

Regarding your mental illness,do you have just mood symptoms or do you have physical symptoms too?
Do your moods fluctuate with your menstrual cycle?

[Findingmyway]

Hi Ivana.. I assume you are talking to me?

I dont believe i am being given high doses.. 

I have suffered with migraines for many years and was put on a preventative that interacted with the antidepressants that I was on. This developed into serotonin syndrome. I was told by a doctor 15 years agao I had depression and anxiety, hence the antidepressants. 

I have seen a Neurologist that has me on preventative that seems to be working. 🙂 Migraines are a trigger for me as they can be so severe I panic at the thought of getting one, that in turn probably gives me one! 

It was just this year (February),after seeing a psychologist during a particularly stressful period that I mentioned some of my actions and thoughts. It was her who suggested I seek further advice from a psychiatrist.  

Was told by that psychiatrist I have a mood disorder and she has tried 6 different anticonvulsant medication since. I thought some of the symptoms I was getting was because of the medication, but just this week have noticed that I am cycling up and I am getting symptoms that I have had previously.. Not sure if its meds or me? I dont understand whats happening in my body... I have not been this erratic before , so I dont know what is "normal".. I am trying to write things down as they happen, but feel like a hypochondriac!  I havent had a really good discussion about what happens when Im feeling low or high. 

High for me is excessive energy that causes me to twitch. Its almost like tourettes with the uncontrollable muscle twitches and facial movements, blowing rasberries... very embarrassing and frustrating... I am also very angry.. I can get angry over things that at other times do not bother me... Feels very erratic and unpredictable, which makes it very hard for my family..

I have always said I have bad PMS... Perhaps this has to do with the moods? 

Sorry for the essay... It actually feels good to get some things out... I try to hide my thoughts and feelings so I do not to bother my husband too much as I am sure he gets sick of it! 

Thanks again..

Meg

[Uggbootdiva]

Theres quite a lot there happening for you Findingmyway.

hormones - I get severe headaches (not migraines) and sharp mood swings during PMT (I know some 'experts' say it doesn't exist but well, it does for me). I usually take the pill continuously as it "smooths out my moods" i have had to stop taking it due to other reasons,  and whammy - big PMT.

Meds are supposed to help, to take the edge off depression or bipolar or anxiety (only MI's I am familar with)

regarding high dosages, it is not what is 'normal or average' dosages, it is what effects you, so a high dosage for you may be non-therapeutic for others. Stuff the studies they really have no idea - y antidepressants caused mania in me, and I have taken sub-therapeutic amounts of meds which have def. affected me.

If you can go withdraw completely from everything and start again(!) it might be worth it. esp. if you can go to hospital or somewhere safe. From your info it looks like lots of cocktails of med, interacting with other stuff etc. and it's not clear what is happening for you any more except misery.

I am so sorry, this is so hard for you - such a bummer. Forget the black dog, as I said in another post MI is such a thief -of relationships, enjoyments, money (manic episodes and therapy and meds) and for me TIME, so much time lost living this shit before diagnosis and then trying to get it right.

Please let us all know how you go, what starts to work for you etc.

all the very very best from lots of people who get what you are going through.

HAHA supposed to be a brief post...not my strong point

[PeppiPatty]

Dear Findingmyway,

You seem aware of yourself, how cool.
Essays are the way to go, have you seen some of mine in the forum??

do you have hobbies?

[ivana]

Finding way-

Personally, I love essays and don't feel like a Hypochondriac even if someone implies it.

Just curious,because it's really interesting,could you explain in more details about your facial movement and twitches?
Are they involuntary or can you voluntarily make them happen?
Is it worse when your stressed?
Is it only one side of your face or both and exactly which muscles are involved (if you don't know the muscle names then which areas,for example the eye area).

[Findingmyway]

Hi Ivana

My twitches become more severe when I cycle up and if I am anxious. They seem to get worse if I get a fright or become very excited.

Its a little hard to explain but I will try. My head twitches to the left. Its like a muscle pulls my head sideways and also turns at the same time. Its always to the left.   My mouth opens wide and and my lips move to the left.. i also blow rasberry noises. My eyes blink shut at the same time, but my left eye can wink buy its self often too. mmm it is all related to the left... Hadnt really thought about that before..

My whole body can become involved too. Mainly my arms and hands. They go stiff first then flick, my wrists flick, mainly my right hand. It interferes with writing. If I am bad I cannot write anything! Bit hard to explain? 

If i concentrate rally hard I can stop them for a short period of time, but then its like all the energy builds up and I have to let it out! And they are worse for a short time if I do this, so i dont try to stop then unless I am out...

I also repeat words when I am like this too. I do at others times but not nearly as much as when I have the tics. I can hide this by repeating the words in my head..

I do have a video of me. My psychiatrist wanted to use it for teaching purposes..

I have just stopped after 3 weeks of contant ticing.. IM EXHAUSTED! And when im like that its hard for me to go out as I am worried about people seeing me like that. I think i might  be cycling down again :(..

Will now wait and see if this medication works..

Started a antipsychotic last week.. have been getting migraines again and my legs and arms feel as though they are made of lead! Not noce at all..

Do other people have this side effect? Does it go away?

I really hate it as I have horses and I cant ride ordo anything really when Im like that.. Sick and tired of this crap now..

My first post said I was scared about hospital.. NOW I wish i could go in and get this medication sorted so I can get on with my life with my beautiful family. They dont deserve to have me happen to them..

[ivana]

I think you explained it really well Findingmyway.
So the head symptoms are sort of like a Craniocervical Dystonia?
When you saw the Neurologist re the headaches did he/she do a EEG and EMG during these episodes?
Do you think that if you are an Inpatient in the hospital that they will then try different medicines in a short time period until they find an effective one?
Are the medications effective for your symptoms but the main concern is the migraine and hayfever type side effects or do you find the medications arn't effective?

Personally,I've been an inpatient in a hospital (public) but it was Neurology not Psychiatry ward so I can't say how it would differ.
My experience involved just sitting there and eating and you rarely see the doctor-once for 15 minutes every few days if a persons lucky- and the rest of the time there's only nurses there but I hope your experience will be different.

[Findingmyway]

Hi Ivana

I had to google Craniocervival Dystonia! hahaha

But yes it doesx sound  like that, ut not there all the time.

I had a very bad episode yesterday, i think it was brought on because my daughter wanted a friend to sleep over! rediculous i know..

My thinking about the hospital was that they could find out why I do this and help me, and try the meds undersupervision. I have had some very bad times where I have hurt myself... Not to die.. just to make it stop... 

Neurologist has not done MRI, EEG or EMG at any time..I see him in 2 weeks so may discuss this with him.

Everyone puts it down to anxiety.. and that is correct to a point, but I get it when I am  not stressed too.

The meds havent had a chance to work before I get the symptoms, so im not sure.

This one I am on now has definately made a difference, but Im getting migraines again and I would hope it would have a better affect on my mood...

Thanks Ivana for you questions as they have actually helped me to really think about my symptoms and how they affects me.

Lost my s**t yesterday.. tics were really bad and was in a bad place with my thoughts.. lucky my husband was home, he took me for a walk and just held me telling me I would be ok until it passes and until the medication I use kicked in... I need to take more now for them to have any effect on the tics.

At this stage i feel like I would put up with the hospital to just be well again..

Thanks

Meg