Frustration

By Shannon Thursday, April 03, 2008

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I feel so frustrated today. No one seems to want to answer my question; is this bipolar, or is the family history of bipolar giving me this diagnosis. It is prevalent in my family, but it's been very hard for me to accept that I have it.

I've been bipolar (no, diagnosed with bipolar) for three weeks today. I've already had my medications changed around three times by three different doctors. The healthcare system, no the HMO's, are so **** frustrating!

So I wanted to post this to get some feed back from people about two things. Firstly, your experiences with being switched around from medicine to medicine like a guineie pig. Secondly, experiences with Seroquel. (I had my Abilify replaced with the Seroquel today)

Thanks everyone!

Hello my name is... Bipolar

Comments (6) | Add comment

Vicki M, Editor

4/ 3/08 3:34pm

Hi Shannon!! I am glad you checked in today.

I might not be able to give you specific information, but I can point you in the direction of some good resources so you will be able to ask your doctor all the right questions.

First there is a very good overview of what bipolar is, how it affects our body, our minds and what some of the causes can be located here. If you do see your doctor and he/she has decided you might benefit from one of the medicines available. You can read about them here in the drugs database. You said you were taking. Here is someone who was taking Seroquel and is being moved to Ablilfy. There are many reasons why doctors will switch medicines. The best thing to do is ask your doctor why he changed. He might have felt that the Abilify was not giving you the relief he hoped. Only your doctor can tell you for sure.

There is alot of advice and help available for people who have just been diagnosed. You can read about those here. Sometimes you have symptoms that you aren't sure are related. Sometimes you have symptoms that you are sure are bipolar related and then you realize they aren't. A good place to look for information about symptoms is here in the symptoms database. Finally, there is a treatments database here that will let you know what the latest and greatest advances in treatment are and might give you more information to go on should your doctor suggest one of these treatments for you.

It can be tough to get a diagnosis of any disease or condition. Bipolar is no different than being diagnosed with diabetes or asthma. It's just something we have to deal with but the bipolar doesn't define who you are as a person.

I am very glad you reached out and I hope you will stay in touch and let us know how you are doing.

Vicki M

Ask the Expert Patient, Health Guide

4/ 9/08 1:19pm

You raise very important issues that go far beyond the specific questions you asked - namely the fear and uncertainty (and frustration) involved in being new to your diagnosis. I will give you a considered response in the form of my next Ask the Expert Patient feature in the next day or two. Trust me, I've been there - I will give this my best shot. I'll post here again when the article is up, along with the link. In the meantime, be hopeful and know you are not alone -

Ask the Expert Patient, Health Guide

4/ 9/08 6:05pm

Hey, Shannon. I just posted a considered response to your post at Ask the Expert Patient under the title, "Just Diagnosed ...":

http://www.healthcentral.com/bipolar/c/59949/24084/comments/

Hope this helps -

ctrygirl

4/13/08 8:22pm

I too am so glad that you have joined our community here,

it is one of the best (and only sites that I utilize to get information and help me through this condition we have all been diagnosed with or are learning to live with someone who has bp).

Trust me girl, when i was first diagnosed i fought it like the dickens,

I had an MD telling me for LITERALLY 3 years that she felt i needed to go and see a psychiatrist and that I most likely had bp or bpd or something of that nature...she saw it, my husband (my big supporter in everything) saw it, and I saw and EXPERIENCED the illness too, but i FEARED the mental health arena to be honest Blush ......i had a bad experience as a younger person watching a movie called One Flew Over the Cuckcoos nest and guess my mentality was too immature to handle it Oh my! , for i felt like OH MY GOSH I AM NOT LIKE THAT AND THEY AREN"T EVER DOING THAT TO ME (uhm paranoria, also a part of bp by the way)

but i fought it so hard, always knew i was different but really believed it was EVERYONE else or didn't bother to ask if they experienced the things i did for i felt that i was perfectly "Normal" (love to find the TRUE definition of THAT word tehee Unsure )

until a BIG Break sent me running to get some kind of answer as to what was wrong with me Woot! .

I literally have 15 other physical illnesses diagnosed by specialist for i never seemed to take the regular MD's word for it ( Wacko everything from neurologist, to rheumatologist to gastrologist you get the point and then only then would i take the diagnosis as correct after more than one opinion)

, i took their advice to go to these specialist and oh the things they found and that was BEFORE the bp diagnosis or before i was conducive o going to a psych doc.)they are from irritating to SEVERE (rls to lesions in the brain)

and just kept thinking it can't be my MIND Sleep oh its this or its that flaring up,

but no, girl it was bp.

....and i went to 4 different pdocs to assure myself that it was as they said Cry ,

and the more i went to therapy Huh? , the more that i saw the results of various and i mean VARIOUS testing (including ones on computers, ones in interviews, ones that included fillout sheets, ones that included picture cards etc, and on and on it went .....trust me, numerous ones, even one testing my sensitivity to certain environmental factors and my reactions (which at the time i had no idea what it all meant)).

So i totally understand the denial and the desire to NOT be bp..and im NOT saying you are honey for i'm NOT a doc and a pdoc does need to dianose that but i think you siad one had????

....I hold a Bachelors and a Masters degree and was a teacher for 12 years not to mention the working that i did for 13 years before i got my degrees. Blink ....so i was so influenced that nothing was 'wrong with MY brain" and they more yu learn about it the more you'll see there are many theories from the gentic one yu mentioned to environmental Unsure

but in all honesty i can look back and sooooooo see the symptoms, the denial, the suicidal thoughts, the turmoil i always felt in, the anxiety and panic attacks and so forth......and that was scattered across my past......and had wonderland parents and childhood of which i am very fortunate therefore another ploy to make me feel like it can't be ME (little did i know the history of the maternal side until much later)....

I waited TOOOOOO LONG to be diagnosed .....you did the right thing getting to a pdoc and getting diagnosed early, from what i read it is much easier to treat when caught early.

I too felt like a guinea pig with the changes in medications over and over and over, but now i am at a stage that i feel they have captured the right "cocktail" so to speak that will help me Unsure I was diagnosed in 2003

.....i still have horrid days and have medium days, and experience some of the worst things of bp (mixed mood stages, VERY rapid cycling, and tactile delusions, not to mention hearing voices, seeing people that no one else can see, and olfactory delusions too)

but over a period of 3 years i had been "experimented" with on 53, yep FIFTY THREE different medications (and this was before i would go to the pdoc!!!!! My MD tried so hard to treat my condition with what she knew but not being a psych specialist she was doing all she could and soooo encouraging me to go seek help.....now i think she saved my life, literally.....)

but since the pdocs i have been tried on over 20 some different medcations, but over a time period that wasn't so rapid....some medications take a while to get into the system and do their job, others take a while to dissipate in your system too

.....sooo hang in there girl......it is normal to be changed from med to med until they find the right combination for you and they will honey.....
I think it is very important to keep a journal or a mood diary that allows you to document how the medication is affecting you on a daily basis and the experiences that you have not only with the meds but with the symptoms of bp

.....that can only help YOU and the Pdoc to understand if the meds are working or if they are needing tweaked or adjusted. I too was on seroquel for quite a while and now am switched to abilify and it is doing such a great job for me

.....seroquel did help some but each persons makeup of course as you know is different and therefore sometimes it takes a while for the pdoc to figure out yours....

but dear, please remember this, you are NOT your illness, you just have a condition that is not cureable, but treatable, it certainly and oh can i testify to that ....is NOT NOT NOT easy, it is not in any way easy to accept that one has it,

but it is far worse to pretend nothing is wrong and then break as i did and almost become TOO late to help......

it took me so long to get to the stability i am at now because i did wait for so long. I now go to therapy 2 times a week instead of 3, i go to a group therapy which is new for me for i went ot one group therapy for 2 visits (on bereavement and it was horrible for me, made me WORSE)

but this one is a bp group and so helpful to me. I meet with pdoc at LEAST every 6 weeks, keep a mood diary and have learned many coping skills and ways to get somewhat slower but still get around with the symptoms that often are overwhelming EVEN WITH MY MEDS>>>
so please do not thinnk there is a quick fix to bp, for there is NOT, but it isn't a horrid thing there are so many others out there suffering from things far worse than bp that well i like to include this in newbie's shareposts for them so that they can be encouraged a little......

http://bipolarworld.net/Bipolar%20Disorder/Articles/art14.htm

i know that without THESE people in the world, we'd be living in a much digressed and different world not to mention the ones unnamed or undiagnosed that are making decisions for many of us on a daily basis

......so that is encouraging, utilize the creativity that you encompass, allow yourself to accept that that illness does not define the PERSON, and that the HEART is the thing that matters most....and here on this site there is a LOT LOT Of heart honey...... Heart

i am glad that you joined us and started posting here, you will find it like a second home, and the friends i have made through here is really amazing to me, for uhm, i do not go out much for active environments and lights and sounds and motions well they sometimes overwhelm me so i even limit where/when/how i leave my home (among the woods by the way, far out in the country) and go into public

.....it is all a balancing, coping, learning experience and if you see it that way instead of a burden or a curse (and oh trust me there are posts, times, and weeks that i DO consider it one of those, uhm often, but i KNOW better)

then it is so much easier to handle really....and i will say a SUPPORT SYSTEM IS ABSOLUTELY necessary.....and you'll find a lot of that HERE if you don't have it at home or elsewhere.....

glad to have met you!

Take care and please let us know how you are doing.

How the switch in meds helped/hurt/indifferent,

how your coping

and anything you need.

I AM NOT AN EXPERT JUST AN EXPERIENCER OF THE ILLNESS.....so all i can offer is first hand advice, past experiences, and the emotions that come with it all.... but i do know the experts i have been in contact with ALSO have the illness or live with someone who does or BOTH!!! So you came to the right place for help......

stay with us, keep us informed, and WELCOME
ctrygirl

Mixie

4/16/08 8:35am

Hello! I just ran across this post. I wanted to add that I also have a family history and doctors are very willing to hop on the bandwagon. You need to be very in tune with your body and your reactions and TALK to your doctor about the goals of your treatment. Medication can and will cause symptoms that mimic bipolar, in people who are genetically prone and some that are not. SSRI's now carry a black box warning that they can induce a manic episode in a previously undiagnosed patient. Birth control pills can also destabilize someone - with or without bipolar.

Get a psychiatrist- a good one. don't take head meds from a family doc or NP. They are not trained for it. Get one family doctor as well. One that is sort of a coordinator or at least knows you are seeing a shrink. dont worry about the insurance, just ask if they do income based or non-HMO.... It is worth paying a good shrink- even if its just for med management and not therapy.

The switching meds is a huge issue as no one ever has the same reaction, side effects, etc. It's all hit and miss until you get something YOU CAN LIVE WITH. Notice I didn't say cure or even help 100% I don't believe that exists. I take two meds that took some tweaking, but have improved me about 50%. This was sorth it enough for me to stay on them.

I wish you luck and please remain active in your treatment. A busy doc or 3 at the end of the day only remembering you faintly from a chart isn't who should be making the big decisions of your life- you should be. Don't feel weak from taking meds (or not) and don't give in to a label of bipolar. As a second opinion I tried going to a different doc and not disclosing my family history. Guess what? I dont have any signs or symptoms of bipolar. The other doc... "your bipolar" Even without never having a manic episode. I wish it was all black and white. Good luck!

Jennifer J

4/17/08 3:29pm

Shannon I just wanted 2 say that I am going through the same situation right now & believe me I know it sucks. I'm sorry that I dont have any advice accept to hang on but I am sure u heard that a million x's but know that I am going through the same exact thing as u at the same time. Maybe we can help each other. I am on effexor xr for the bipoar and another med for anxiety but the effexor isn't working but I just started taking it a few days ago. If I continue to try to hang on & eventually find the right med it might cost me my job & I'm a single mother whose father doesn't $ any child support but anyway if u want 2 write back, I'ld really like 2 hear from u. I hope u feel better & maybe a little less frustrated :) !!! later...Jenn J.

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