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Author Topic: Feeling lost  (Read 5377 times)

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Offline CitizenWill

  • Member
  • Posts: 11
Feeling lost
« on: August 04, 2010, 12:35:38 PM »

I am having such a bad time. I can't seem to get on with my life.

I have been battling depression since I was diagnosed (19 years) and these last few months I just can't seem to find any joy. I keep thinking what the hell am I saving myself for. I am on a rescue cocktail with my meds because of resistance. I dread taking my pills every morning because they make me feel nauseous and sweaty. I sit on the sofa for hours waiting for the sicky feeling to pass. I have tried taking them with food but that just makes me hurl. What a miserable existence.

I live in a small northern town in northern Canada and I feel like a leper. I have tried to meet people and make friends but my status is always there and I have to sneak around it and they eventually drift away. Because of discrimination I never tell anyone I am poz so I never get close to anyone.

I would like to move to a larger community or city but because of my elderly mom whom I care for I can't. Plus I am on a PSAC LTD and I don't know if they would allow it.

It's also getting cold here again and the cold weather makes my PN act up; my feet burn, my hands ache.

Sorry for sounding so miserable but I needed to get it out.


Offline BT65

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  • Posts: 10,464
Re: Feeling lost
« Reply #1 on: August 04, 2010, 06:10:56 PM »
Hi Will, I'm so sorry you're having such a rough time.  Have you discussed the med issues with your doctor?  Have you tried any of the anti-nausea medications, like Phenergan?  I had to take that years ago, when I was on a combo that made me ill.  I'm not a doctor, and am not saying you have to take it, but maybe discussing some options with your doctor would help?  Dunno.

So, people are pretty discriminatory there, towards people with HIV/AIDS?  Is there no one who knows that you could get out and do things with?  Are there any ASO's nearby?  Maybe even a bit of a travel would be worth it, if there's one in a city near you.  At least you could meet others, who wouldn't drift.

I have pretty severe PN also.  I take 900 mgs of Neurontin 3 x a day.  I guess I've taken it so long, it really doesn't cause the disabling drowsiness some other people complain of.  Of course a lot of people are on lower doses.

Of course, we're here.  We're always willing to listen.  Hang in there! :-*
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline newbieguy

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  • Posts: 197
Re: Feeling lost
« Reply #2 on: August 05, 2010, 05:01:57 PM »
Hi there, sorry for how you are feeling now, I can relate. I live in a smaller southern town, which although it has a huge gay population, the attitudes towards HIV poz people are still VERY ignorant. In the so-called gay community here, you are essentially made to feel like a total leper or outcast. Its like you have the plague or something. I just keep a very low profile and I am scared to get close to people too because Im scared they will just reject me. I hope peoples attitudes change. I am definately thinking about maybe going to a support group here. Just wish there was more of an open attitude towards poz guys within the gay community here. Guys are just scared to say their status because people make you feel like you have the plague or something, and theres this attitude of just subtle shunning that goes on. Like after you meet people and disclose your status, they might say they are cool with it, but you can tell they are trying to just distance themselves until pretty soon you get the hint they just dont want to be around you. I too have older parents I have to care for and I have to finish school but next year when I do I hope to move somewhere else. Hang in there, I hope you feel better. We have to try and believe there are nice guys out there who wont judge us judt for being poz. Best wishes to you and hugs!!!


Offline CitizenWill

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  • Posts: 11
Re: Feeling lost
« Reply #3 on: August 07, 2010, 10:11:54 PM »
Thanks BT65

No there are no ASO's here nor any gay groups. I'll have to ask my doctor about the Phenergan. I never thought there might be a pill for nausea. I am also on the Neurontin 1200 mg X 3. They keep upping the dose but it doesn't do a damn thing.

I am feeling a bit better today. Spent a night camping with my dog and the change of scenery seemed to help a bit. If I was a drinker I would just get hammered but I gave that up years ago.

Anyway, thank you for the response.


Offline CitizenWill

  • Member
  • Posts: 11
Re: Feeling lost
« Reply #4 on: August 07, 2010, 10:18:40 PM »
Thanks for the response Newbieguy.

Yes I still have hope. When you are diagnosed it just seems that your world suddenly shrinks. Especially living in a small town like we are.

I am hoping to take a trip to Montreal and Toronto in the next year. Maybe I'll make some new friends on the other side of my gloom. I just wish I could get over this hump and find some joy again.


Offline roy100

  • Member
  • Posts: 124
Re: Feeling lost
« Reply #5 on: August 07, 2010, 10:35:50 PM »
You need to change your depression medication,use  Remeron ( Mirtazapine ), which is what I use . It makes you hungry, gets you off the nausea. You will be without depression , talk to your Dr about it.
Try to meet people in your area with those on site web pages, you will find someone.

Cold wheather is terrible, I like the heat better than the cold.
Diagnosed 18Th March 2010
March 30Th VL +100,000 CD4 46
CD8T  575 CD8 %60.6
On Truvada and Kaletra. . Remeron 15mg  and150 mg  wellbutrin xl for depression. Clonazepan 2 mg to sleep. Omeprazole 20  once a day.
July 17 2010 Vl 362 CD4 155, 6.4 %
CD8T suppressors 1482 CD8% 61.1
 Nov 16 2010: V l 937 CD4 188,10%
CD8T Suppresors 997 CD8%55.8
August 15th 2011 Vl UD, less than 40.
CD4:543(26.7%) CD8:887 (43.6 %) Ratio .61
Jan 14th,2012 ,less than 40.
CD4:478 (24.4%) CD8: 962 (49.1%) Ratio.50
June 2012 CD4 599, CD8 856 UD
Oct 2013 CD 702, CD 843 UD Ratio:.87

Offline BT65

  • Member
  • Posts: 10,464
Re: Feeling lost
« Reply #6 on: August 08, 2010, 05:41:01 PM »
You need to change your depression medication,use  Remeron ( Mirtazapine ), which is what I use . It makes you hungry, gets you off the nausea. You will be without depression , talk to your Dr about it.

I'm sure Will knows to discuss all his options with the doctor.  I personally couldn't use Remeron.  I had non-stop eating, and it didn't do a thing for my depression.  Medication though, of course, effects people differently.

Will, wow, that's a huge dose of Neurontin you're on. .  I just had a doctor's visit Thursday, and was discussing with him my issues with nausea and light-headedness.  He's switched me from Neurontin to Lyrica, and seems to think it will help.  I haven't started the Lyrica yet, but probably will next weekend. 

I don't drink anymore either, though sometimes wish I did.  I hope you're able to make your trips next year, and that they help.  Maybe you can hook up with some people in the bigger cities, and keep in touch with them.  Again, we're here. :-*

I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline CitizenWill

  • Member
  • Posts: 11
Re: Feeling lost
« Reply #7 on: August 12, 2010, 12:29:24 PM »
I tried Remeron and could not stop sweating. It was horrible.

Yeah the Neuronton dose is high and it doesn't do a damn thing. I will bring up the barfy feeling to my doctor and see if I can get some Phenergan.

I also got some grow lights to see if that helps my mood and added Vitamin D to my regiment. I have hope I will get out of this rut soon.


Offline BT65

  • Member
  • Posts: 10,464
Re: Feeling lost
« Reply #8 on: August 14, 2010, 05:17:11 AM »
Hey Will,

I started the Lyrica about 3 days ago.   I'm on kind of a low dose I guess-50 mgs twice a day.  It's helping, without me being incredibly dizzy.  So, I guess the Neurontin was a huge contributor to the dizziness.  I know different people have different opinions of Lyrica, but it seems to work alright for me.

Good luck with the Phenergan.  Hopefully the doctor will understand you'd like some quality to your life, and give you some.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline techieman

  • Member
  • Posts: 3
Re: Feeling lost
« Reply #9 on: August 14, 2010, 12:46:31 PM »
Go get the book Get Off Your "But" by Sean Stephenson, it helped me. Has nothing to do with HIV, Meds, or anything gay related. Just a good book and will make you think. Can't hurt to read!

Offline CitizenWill

  • Member
  • Posts: 11
Re: Feeling lost
« Reply #10 on: August 14, 2010, 05:34:42 PM »
Thanks Ted.

I ordered the book.

I really think I am broken though. I was feeling good then Wed. night I couldn't sleep, I was dead tired but when I laid down to sleep and suddenly I had a thought that if I let my guard down and slept someone would die. I know it's stupid but there it was. I couldn't sleep Wednesday or Thursday and Friday. I went to emergency and they thought my morphine does was to high, "what the fuck?, is someone trying to kill me?". They wanted to check me in but I refused. My partner wound up taking me home.

I feel so empty and confused. I see my psychiatrist on the 23 and pray he has something for me. I just don't know anymore. Maybe this is really hell I am living in? I feel so alone.

Sorry for ranting but I don't know where else to turn. I feel like the hiv is finally eating my brain. I am tired and worn out, what the hell am I dragging this on for.

Offline BT65

  • Member
  • Posts: 10,464
Re: Feeling lost
« Reply #11 on: August 15, 2010, 05:34:33 AM »
Will, you just go right ahead and rant.  Sometimes that's what's needed. 

Do you keep a journal of how you're feeling?  That way, when you go see your psychiatrist, you could just whip out your journal, rather than having to try to remember "exactly" how it was you were feeling, and I think it's just easier to explain things that way.  I would write everything down, especially those hard times you go through, with obsessive thoughts. 

I hope you find some relief soon.  It's important not to take a fatalistic mentality; not to imagine the worse, that would have to do with the HIV "eating your brain."  You may have something else going on.  Try not to sink too low.

Edited to add:  By "sink too low," I mean mood wise, not you personally.
« Last Edit: August 16, 2010, 05:18:35 PM by BT65 »
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline jm1953

  • Member
  • Posts: 286
Re: Feeling lost
« Reply #12 on: August 16, 2010, 11:44:04 PM »
Will, sorry about all you are going through.  This is definitely the place to get the support you need.  We all, or most of us, have been there one way or the other. 

Like another member posted, I live in a large city too with a rather big gay population, but the poz community seems very disconnected.  Ironically, I had the best support ever by ASO's while I lived in Hawaii.  Had to move back to the mainland for family business and emergency very reluctantly.  Here very isolating.  And I don't have a supportive family except my dad who I speak with.  The rest have pretty much divorced me because of Homophobia, Aidsaphobia, all orchestrated pretty much by my older sister.  So I too am looking for a support group here through my ASO.  Once you get hooked up into a good one and find people going through the same or similar stuff as you, you feel much less alone.

For your nausea, have you asked your doctor for Marinol, not sure of the spelling, or even perhaps getting a prescription for the real thing.  Not sure if that's available there, but it seems to work for so many of my friends having the same problem.  A more expensive approach might be Zofran which is very expensive, but a medicine given to cancer patients during chemo.  I've taken it and works like a charm and doesn't knock you out.

Remeron didn't work for me either.  I just couldn't tolerate it.  I'm currently on Wellbutrin XL. 

Hope some of this helps,

In the meantime, hang in there and know you are not alone,


Positive 29 years. Diagnosed 10/1987.  Current CD 4: 720: Viral load: almost 100.  Current drug regimen, Tivicay, Emtriva, Endurant, Wellbutrin, Clonazepam, Uloric, Losartan Potassium,Allegra, Ambien, Testosterone, Nandrolone, Vicodin, Benedryl, Aspirin, lots of vitamin supplements.

Offline CitizenWill

  • Member
  • Posts: 11
Re: Feeling lost
« Reply #13 on: August 18, 2010, 01:54:55 PM »

I want to thank you all for the wonderful posts. You really got me through my dark days.

I will talk to my doctor about the nausea medication. I just know she will be pissed with me because I am supposed to take the stuff with food. But if it makes me nauseas I just can't do it. I never considered discussing it with the doc.

I have been seeing a neurologist and he found my brain had shrunk and diagnosed dementia.

I have tried journaling bit because of the neuropathy in my hands writing and typing get too painful. I have been trying to ween myself off the morphine and think that may of caused my last episode. I dropped from 90mg 2 x day to 75mg 2 x a day. That may of been to fast of a drop. I have not told my doctor I am going to ween myself off I just hate having to use the stuff. I would rather live with the pain (I think).

I also have my LTD insure phoning me all the time for updates. I seem to get really anxious and depressed after one of those calls.

I am currently on Effexor 200mg.

With all the meds, side effects, OI's and depression I sometimes just feel like a mutant or a lab rat. Have a reaction to a med and get two more to deal with it. I sometimes ask what the hell I did to have to go through this. I thought I was a nice guy must be some really bad past life karma.

I am feeling much better today. A friend took me fishing on his boat on the weekend and that helped a lot.

I wish there was a ASO here but because of the isolation and low population there is not.

Thank you all again for listening.

Offline BT65

  • Member
  • Posts: 10,464
Re: Feeling lost
« Reply #14 on: August 20, 2010, 04:02:30 PM »
I know exactly what you mean, Will, regarding feeling like a lab rat.  Over the past 21 years, I have felt that way many times (and feelings of other things, like a mummy etc.).  I just had two medication changes, (sorry if I already talked about this), and one of them gives me fits every once in awhile. 

And depression, I totally understand.  I'm going through a bout today.  And my depression goes from feeling a bit down - feeling almost suicidal, pretty fast.  I just hang on when that happens.  It doesn't happen as often as it used to, though, which is good. 

So, there are those of us who totally understand.  About the "shrunk brain," how did the neurologist determine that?  I'm curious.                 Keep going, buddy.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline debsd222

  • Member
  • Posts: 69
Re: Feeling lost
« Reply #15 on: September 04, 2010, 10:03:29 PM »
Will, I was on morphine when my shingles were really bad. It made me completely, totally 100% crazy. I remember very little of the 3 months I took it , but I was off my f'ing rocker. I was taping cutout pictures from magazines to the bottom of the table legs so "the dog would have something to look at". I was really out of it. I decided to stop the morphine and thats when things started getting better. The pain was bad, but not as bad as being off my tree. I will never take that crap again. I dont know if its an option for you to find some other pain-relief solutions, but I will tell you that morphine sucks. Dilaudid too.
April 08 3 month bout w/ shingles, ongoing nerve pain
Dec 08 pos  cd4 200 %8  VL 18,000
Feb 09 started sustiva, truvada -allergic to sustiva, hospital 4 days.
March 09 started truvada, reyataz and norvir
March 09  cd4 279  % 12 VL 10,000
April 09 cd4 327  %12  VL 300
Aug 09 cd4 392  %16  Vl undetectable
Dec 09 hospital pneumonia 6 days
Dec 09 cd4 462  %20  VL undetectable
Mar 10 cd4 629 27% VL undetectable
July 9, 2010 cd4 505  21% VL undetectable
Oct 2010 cd4 689  22%  VL 64
Nov 2010  cd4689  22%  VL  UD
May 2013 cd4 759. 29%. VL. UD

Offline deibster

  • Member
  • Posts: 158
Re: Feeling lost
« Reply #16 on: September 08, 2010, 01:20:32 AM »
Hi Will, I hope that you are feeling better. Depression runs in my family & I have been on antidepressants for over 20 years. I am surprised that you are on Effexor. When my initial depression improved (I had changed docs in the few years it took to see real improvement), I told the doc I feel better but I feel like I'm in a mental fog all of the time. He took me off of Effexor & kept me on Welbutrin. The doc said a lot of his patients complain about the mental fog with Effexor, so you might want to ask your doc to change it to something else. Hang in there buddy. Hugs from Cape Cod, MA
Poz since Dec 1992. Meds since 1995. Disability since 2005. Constantly fighting the Lipodystrophy 'beer gut.'

Prezista/Norvir, Epzicom, Cytomel, Prevacid, Coumadin, pravastatin, Fenofibrate, Remeron, Zoloft, Concerta, Flomax, Allegra180, Nasacort, Centrum, Flax Oil, Fish Oil


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