They don’t tell you your mentally fucked!

[Danny90]

I’ve been diagnosed now for a year and two months and the past few months I have mentally started to decline I’ve quit two jobs and now work part time. I’ve secluded myself from my loved ones. I feel so different I don’t mentally feel the same I feel like a different person who’s now left to navigate my life and who I am now.. I wake up in the mornings and feel like I’ve slept on my hands their numb kinda achy it’ll last through out the day sometimes or for a few hours. I’m on Biktarvy and supposedly there’s few side affects but I have odd dreams now I get aches in my bones in my arms and lately I found that if I don’t eat and just take my medication it makes me feel like I’m going psychotic! My brain races a million miles a minute. I’ve stopped smoking which is a good thing but not because I wanted to but now I get nauseated when I smoke and I literally feel my brain get foggy after a cig so I quit.  I’m thinking of maybe becoming vegan and trying a low inflammation diet. I really don’t want to go on psych meds I just feel like a failure I have always worked and paid my bills and have always been extremely independent and now I’m floundering around with my head just above water. I just feel so caught off guard by how everything thing has turned out I feel like I wasn’t warned about how life will truly be after diagnosed. They said you’ll just have to take this one pill a day and you’ll live a normal life you’ll probably die from cancer and not from your diagnosis oh and there’s little to no side affects. Bull! My life is changed forever.

[Jim Allen]

Hiya Danny,

Welcome to the forum, I'm sorry to hear your pain and that you are struggling.
Congrats on stopping with smoking regardless of why you stopped that stuff is shit and will kill you.   

You mentioned you have been diagnosed over a year ago, but only recently started to have problems. 

Have you spoken to your ID doctor about these issues & concerns? Firstly to rule out any underlying causes and obviously, if the meds you are currently are causing for you unmanageable issues it's worth discussing a switch. Biktarvy is great but like any medication, it's not everyone's cup of tea.

How are you doing for the rest? What's your VL like and as you have been on treatment for over a year has your CD4's risen? I ask as I also wonder if you started out with very low CD4's?

Best, Jim

[Danny90]

Hi Jim last appointment my cd4s were 852 and ive been undetectable. I’ve been utilizing all my resources therapy groups but I just feel like everyone is so quick to be like oh your numbers are great soo your great now get out! lol I just feel like they have soo many patients that they are all about the blood work and mental health is not really focused on. I tried talking to the doctor about medication for my depression but he was just unhelpful he came off very well if you wanna try it I won’t stop you but I’m not going to force you do I came out even more confused and scared on what I wanted or even needed for my mental state..

[Jim Allen]

Hiya,

I just feel like they have soo many patients that they are all about the blood work and mental health is not really focused on.

Well, sure the physical aspect and also the lab work is part of monitoring health.
It's equally important as mental health, some people will focus more so on the physical health depending on their needs.  Does not mean that because you don't have physical health issues their concerns or less vaild or that your mental health concerns are less vaild either.

Overall though far more mental health support is needed and more holistic care but it's understandable the support programs have mostly focused on testing & getting people on treatment as that was and still is a challenge.   

Okay, so the doctor was open towards you trying medication for depression, it's unclear though if you did start with that? Are you also seeing a therapist? Therapy groups are nice complimentary support but if you are suffering from depression some one-to-one support is something I would recommend.

[Danny90]

I didn’t start meds. I had therapy sessions but didn’t feel they were helping then my therapist recently left so I stopped. I just figured I’ll figure it out on my own.

[Jim Allen]

Well, I'm sorry to hear the therapist stopped.

Look I would urge you to seek a new therapist ASAP and to talk to them about starting the anti-depressants the Doctor was okay with.  Improving depression is rarely fixed by just one thing or action, it's often a combination of support tools used together over time.

Depression can happen to anyone, at any stage in life and you are not alone, I've also included a link to this sticky that contains some tips and references that might also help.

https://forums.poz.com/index.php?topic=69487.0

Take it easy.

[wardp]

Talk to your doctor about switching to another combo that has less neurological side effects. Why would you take antidepressants if their is a chance that your meds are causing your symptoms? Also if your sleep is disturbed by your meds this would also not help your situation. Don't give up. There are so many combos now available.

[harleymc]

You don't want therpy, you decided not to use medications... What do you want us to do?

[MarkintheDark]

Hope you're still following this thread @Danny90.  As someone who's fought depression for, quite literally, decades, I get it.  And I sure as hell don't want to overwhelm you further.

One suggestion I can make that's at least an online band aid is DepressionForums.org (https://www.depressionforums.org/forums/forum/12-depression-central/).  They're HIV friendly and, in my experience, completely supportive and nonjudgmental.  Folks there tend to hear you out since they've walked similar paths.

When you're ready, I concur with @Jim Allen on finding another therapist.  It sounds like one-on-one was productive for you.  Believe me, I understand that the very thought of starting all over again may feel daunting and, again, even overwhelming.

Only my opinion, but it sounds like your ID doc is rather detached and uninvolved.  If finding another one is an option, I'd go for it when you're able.  Personally, I've found Nurse Practitioners (NPs) more responsive to my needs and they have all the same script writing ability as an MD, PA or OD.  I've had no problem walking out on unresponsive doctors.

Finally, whether thru a therapist or doctor/NP, you may want to explore finding a good, compassionate psychiatrist.  And the reason I mention that is they're trained to know what the subtleties of various meds are, compared to just the general knowledge of other doctors who, in my experience, may simply default to the latest thing.  Good psychiatrists have working knowledge of the side effects, if any, good and bad, of various meds.

I hope you keep posting.

[guitargal]

I know what you are going through. Took me years to overcome so many things. I rose from 30 t cells in 1994  when I thought I would not live long enough to see my son graduate grade school. He is 28 now.
Felt sick, crappy, depressed, then good, great, the set backs ih my...this was before the good meds so read all you can and find good support... Over the years it has been a roller coaster.  Baby steps. You can do it!

[em]

mentally

how does anyone deal with that life has to throw at them ?

anyone who does not have  mental illness is not paying attention.
HIV or not

every day  you live is a day closer to the day you die

flip it

 until the day you die every day is a day you should live

time is running out for everyone

in both statements there is a limit amount of time. the second way you should cherish each day you are given .

I believe my own mental illness short falls stem from the realization to the futility of our existence.  and my mind died but my body kept going.  why give  any thought to what a crazy person thinks ?

just take another breath and let the thought come over you that air filling your lungs makes the moment worth having and take the day to be what you think it should be a time to live and make the best of it ?

the people around you are thinking the same thing that they also are f d try to see that maybe just maybe you might be the motivation they need to see past it .
 

cry when you want laugh when you want .   

and a cheerful long life might be before you and the time will prove me right . 

you just have to live it .   

I had run into a coworker from a place I had worked  He had he said to you remember our other coworker ?  I said yes I do . the coworker made this serious face and said they died from AIDS . then stared at me all seriously scrunching his face . I burst out laughing at the serious look on their  face > I guess I am the kind of sick type person the laughs at a funeral > thinking lucky them there struggle is over .  I thought that is going to my path to die soon .  when he said this I knew I had HIV people are going to say that about me . it made me feel less concerned about life .  then the confused look on their face when I laughed they said I am being serious . they were trying to be serious sharing that news ? I said thank you for that I needed a good laugh .  aren't you suppose to laugh at death if you are brave ?  death and the serious look people have when they tell you someone has passed . I find it funny that they are so concerned with what is going to happen to everyone . enjoy what you have and say do you recall so and so . they passed away of a valiant battle with AIDS and should be remembered for all the smiles cheer and enjoyment they had shared with those who new them . but hey I am mentally ill . so do not give my thoughts any weight think for your self and you watch if you take the pills years and years are ahead of you enjoy as much as you can . or not it depends on what kind of person you want to be . or not to be ?that is the question  to quote someone from a story from long ago . those feelings are nothing new just remember having HIV makes the journey even sweeter knowing you were told you could not do it but did anyone way just to prove them wrong . O ya this story was over thirty years ago .



all the best  to you

em


 

[Wolfie123]

Reading your story I was literally there 2 weeks ago before i started my meds and I was diagnosed  in august of 2019 so I got it between June and august I'd say.  I too live alone and pay my Bill's and take care of myself. I've always taken care of myself because no one is going to treat you the way you treat to yourself.. that being said I felt like a different person still do sometimes i feel like I let myself down..
 But I'm living this life .. MY life the world isn't going to stop Bills won't stop coming  through it all I still haven't had a good cry about being diagnosed... (hopefully I'll be able to Express that someday) still haven't told anyone but I get it feeling like you're  on auto pilot I just work and come home smoke weed to relax and work on my expanding my business endeavours. I'm finding things to focus on and things I want from this life. Wanting to be a home owner is a new dream  I want to make come true. So even now I'm finding things I want from life and I want to make them happen. So I've been pushing. We all take this virus to heart a different way and to a different degree. But we all have similar  experiences or comparisons.

[eirin]

Hi Danny,
I hope you are feeling better! It would be nice if you could tell us how you are doing now.

I know that most people are tolerating Biktarvy very well, unfortunately a few of us do not. I had side effects similar to what you are mentioning; feeling like my mental state of mind was declining, like I was a totally different person from my "normal" self. I didn't want to leave my apartment and when I finally got the courage to go outside I was very anxious, I couldn't cope with what was happening around me. It felt like I couldn't connect with other people, I felt depressed and I didn't have much interest in anything anymore. In the morning I felt nauseous, I had heavy pains in my bones and muscles and my hands and feet were cold. I also had very vivid dreams. After reading some reviews about Biktarvy I realised that my experience wasn't unique. I contacted my doctor and he agreed to take me off the Biktarvy straight away.

I am now back on my old medications; Isentress and Kaletra (my doc will change the Kaletra to something else at my next appointment). It took only a few days before I felt "normal" again and the gloominess was gone. So maybe you could try to switch from Biktarvy to something else to see if it could help you as well, if you haven't done so already. I am not saying that it will do the same for you as it did for me, but it could be worth a try.

I could't tolerate Triumeq and Genvoya either. It can take some time to find the medications that works for you, so do not give up.

[newbie2016]

By the way your not fucked your going through the motions and emotions this I learnt is real and normal through therapy.

[Genomity]

Danny, if you're in New York drop me a line. I could help you.

[TGun]

i feel like i really struggled myself for about 1.5-2 years, then after that i just seemed to get back to normal again.. its a process and you will get through it eventually.  it is by no means easy, but tons of people have been through this before.. hang in there!

[Patient700000]

Hey Danny,I just wanted to tell you even though you feel alone you are not,I am right there with you and going through a lot of the same issues.I don't have any advice except that I understand how isolated you feel because I feel it too!I hope you are doing better now!