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Author Topic: feel like i'm dying  (Read 2310 times)

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Offline pansywilt

  • Newbie
  • Posts: 2
feel like i'm dying
« on: November 12, 2018, 04:14:29 pm »
Hi to everyone,
This is my first post, so please bear with me!I finished Harvoni treatment in July.I waited for the new wave of drugs,because I saw the effects of interferon,taken by a friend, and because i was symptom free even though i had been infected with hiv and hep c for 33yrs I was well enough.I was assured by my medics that the side effects of Harvoni were negligible.Boy was I misinformed.I was constantly sick, could not eat,sleep and the depression.I am bipolar, but usually fairly well maintained by Lithium
and at times antidepressants.Every day I felt suicidal,with too many weird side effects to go into now.Anyway I got through the treatment,having lost a stone in weight,and have been waiting to feel better.I still find food a battleNo appetite whatsoever.Continue to lose weight,and every day feel I want to end it.I am usually a tough cookie, but I feel as though my body has had it.Just want to sleep and sleep.I feel so ungrateful because I am now neg viral load, but I felt much better pre treatment.I've always had a great rapport with my hiv docs, but my liver team just keep telling me the side effects are unlikely to be Harvoni.I feel as though I am going mad.Can anyone tell me when I am going to feel better Nausea still a big problem as well.
 
« Last Edit: November 12, 2018, 04:16:59 pm by pansywilt »

Offline strangerbynight

  • Member
  • Posts: 113
Re: feel like i'm dying
« Reply #1 on: November 12, 2018, 10:08:18 pm »
I would think maybe your body depleted some vitamin D, try to expose to the sun at least 30 minutes a day or buy a vitamin d lights like me, its a bit pricey but well worth, i felt like that after treatment too but ever since i use the vitamin d lights and exposed to the sun when ever ican it helps so much, i heard its common for hep c people are vitamin d and b12 deficiencies, maybe try to take some vitamin supplement too..just a thought.

Offline pansywilt

  • Newbie
  • Posts: 2
Re: feel like i'm dying
« Reply #2 on: November 13, 2018, 04:51:33 pm »
Thankyou for your advice, I think I will certainly try a course of vitamins and vit d

Offline lporterrn

  • Global Moderator
  • Member
  • Posts: 1,983
  • LucindaPorterRN
    • LucindaPorterRN
Re: feel like i'm dying
« Reply #3 on: November 13, 2018, 05:53:11 pm »
This is very unusual and I suspect that something else is going on that is unlikely to be connected to your treatment. I know that it may feel like they are, but if you can expand the field of possible causes, you may find some relief.

Sorry this is so rough for you.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline I fightis thetitis

  • Member
  • Posts: 126
Re: feel like i'm dying
« Reply #4 on: November 14, 2018, 02:29:37 am »
Hey there Pansywilt,

Hang in there it does get better. Your body is adjusting to it's new "hep free zone" after years of adjusting to living with the virus.
I had sever panic attacks now all gone.

I used exercise and deep breathing to clear myself off the meds. Your body wants to heal, keep trying the positive stuff. Trust the process it's worth it!

Best always,

Greg

M59  56@start of TX. date infected:1976
diagnosed 1997 - asymtomatic
Genotype 1a
AST 111 -ALT 124 - AFP -89
Viral Load 1900000 - Log 6.28
Fibro Test F4 ActiTest A3
Harvoni 24 wks - start date 11/24/15

6 Week Labs VL Undetected!
104 weeks EOT Undetected.

8/25/17 Fibrosure score 80 = F4
11/10/17 Fibroscan 7.5 mean 1.6 m/s = F2
8/2018 Ultra sound normal.

Offline LindaBalz

  • Member
  • Posts: 87
    • FB
Re: feel like i'm dying
« Reply #5 on: November 14, 2018, 12:34:56 pm »
Hey Greg,

did u always have panic attacks? pre Hep C or just from it?

Linda
LB

Offline I fightis thetitis

  • Member
  • Posts: 126
Re: feel like i'm dying
« Reply #6 on: November 15, 2018, 02:35:03 am »
Hey Linda,

I believe I contracted hepc mid seventies from an unsterile Tattoo. All my bandmates agreed to and they all prob got hep c as well.

My panic attacks started around 1994. I believe hep c played a role in mine.
They progressed to debilitating ER attacks, (stop airplane bad) and began Diazapam meds around 1996.
Panic morphed into agoraphobia, ie fear of bridges, heights, any situation where escape was impossible, cruises, Disneyland rides ect.
Around 2005 I began cognitive techniques and began to understand my triggers. The biggest triggers were lack of sleep, caffeine and fear of another attack.

In Nov of 2015, I began Harvoni for 24 weeks, Panic attacks are all gone!
Now, I even tempt Panic and deliberately get myself really caffeinated. The attacks are so mild I just start a series of deep breathing and counting exercises and get centered within minutes.
I do this to assure myself I'm in control.

Panic attacks suck!
Not only do you feel like your dying, add in pounding terror as the adrenal glands release. It took me about 30 min of insane fear to get my heartbeat normal, or the meds kick in and sedated. 

My heart goes out to anyone who has had to deal with them. Clear hep c, it gets better!

Best always,

Greg

 
M59  56@start of TX. date infected:1976
diagnosed 1997 - asymtomatic
Genotype 1a
AST 111 -ALT 124 - AFP -89
Viral Load 1900000 - Log 6.28
Fibro Test F4 ActiTest A3
Harvoni 24 wks - start date 11/24/15

6 Week Labs VL Undetected!
104 weeks EOT Undetected.

8/25/17 Fibrosure score 80 = F4
11/10/17 Fibroscan 7.5 mean 1.6 m/s = F2
8/2018 Ultra sound normal.

Offline LindaBalz

  • Member
  • Posts: 87
    • FB
Re: feel like i'm dying
« Reply #7 on: November 17, 2018, 05:46:17 pm »
greg,

Yeah I know those types of panic attax but I have been getting them way before Hep C,  1974, got the beast in 2004 from a dr. reusing needles on back injections. I can function, been on benzos 30 yrs, and for a time antidepressants which help but didn't like side effex. Hopefully, if this Mavyret  works & I will feel less anxious, we shall see.
Glad you're clear and feeling better with those horrible attax. Good for u!


linda ;D
LB

Offline Mugwump

  • Member
  • Posts: 753
  • My number of posts means nothing, piscor ergo sum!
Re: feel like i'm dying
« Reply #8 on: December 29, 2018, 03:47:47 am »
Hey Linda,

I believe I contracted hepc mid seventies from an unsterile Tattoo. All my bandmates agreed to and they all prob got hep c as well.

My panic attacks started around 1994. I believe hep c played a role in mine.
They progressed to debilitating ER attacks, (stop airplane bad) and began Diazapam meds around 1996.
Panic morphed into agoraphobia, ie fear of bridges, heights, any situation where escape was impossible, cruises, Disneyland rides ect.
Around 2005 I began cognitive techniques and began to understand my triggers. The biggest triggers were lack of sleep, caffeine and fear of another attack.

In Nov of 2015, I began Harvoni for 24 weeks, Panic attacks are all gone!
Now, I even tempt Panic and deliberately get myself really caffeinated. The attacks are so mild I just start a series of deep breathing and counting exercises and get centered within minutes.
I do this to assure myself I'm in control.

Panic attacks suck!
Not only do you feel like your dying, add in pounding terror as the adrenal glands release. It took me about 30 min of insane fear to get my heartbeat normal, or the meds kick in and sedated. 

My heart goes out to anyone who has had to deal with them. Clear hep c, it gets better!

Best always,

Greg

 
Know that this is an old thread, but upon re-reading your post a light went on in my head. I did not suffer from what could exactly call classic panic attacks during the time I had HCV. HOWEVER it was the symptoms of irrational panic and manic then depressive levels of state that lead to a doctor to test my thyroid functions in my late 30's. It was discovered that I had cycles of elevated thyroid hormone in my blood that shot up to levels that created hyperthyrodism and the accompanying symptoms of thyroid hormone excess at toxic levels.
Instead of being absorbed and used by cells the excess thyroid hormone in the blood breaks down into chemicals that cause all sorts of issues. Including but not limited to; heart irregularities (racing heart beats), mental hyper activity, head aches, excessive hunger and most importantly mental aberrations and lack of sleep.
This finding lead to me being misdiagnosed with Graves disease in 1989 when I was only 37. I had my thyroid irradiated and have been on thyroid replacement hormone ever since and have not suffered from these symptoms since I was in my late thirties.
The only rational explanation for my misdiagnosed condition of Graves disease is that it was HCV causing my immune system to attack my thyroid gland. My specialist and GP agree with this possible analysis of what has occurred to me.
To put it in terms more easy to understand, long term HCV infection can cause severe mental stability issues that seem completely unrelated to what the primary problem with HCV is, namely the ongoing destruction of liver cells. For an unfortunate group of us the disease did cause us problems that the medical profession had and still has a hard time explaining and treating.

Hang in there pansywilt, Linda, Greg and all the others out there who did suffer and are still suffering, you are not alone by any means when it comes to dealing with this hell that was and is HCV infection.
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline andrew j

  • Member
  • Posts: 476
Re: feel like i'm dying
« Reply #9 on: December 29, 2018, 04:27:32 pm »
Eric,

I think you're right about HCV and thyroid probs.
My thyroid levels were low - but then things got really out of hand during, and post-interferon Tx.
Recovery was / has been very slow.
I took some sup-type thyroid support stuff (I know you don't agree with these things) ... but by now, everything seems to be OK.
Maybe a lot of it was simply due to the HCV.

I have enjoyed your ... rage? - when it comes to Hep C - and what it can do to us.

I was really unwell when I had Hep C.
The brain fog was so bad.
It just never, never went away.
I was just thinking about it this morning, actually.
Twenty-odd years of blurry, distorted thinking, and the incalculable losses flowing from that, including lost relationships, money, opportunities, etc. etc.
I've been left with permanent injuries from misjudging a jump off a seawall.

Do I have fond memories of 20 going on 40 years of HCV infection?
No - I don't!!

In Chinese medicine, liver functioning is directly related to functioning of the brain.









Offline LindaBalz

  • Member
  • Posts: 87
    • FB
Re: feel like i'm dying
« Reply #10 on: December 30, 2018, 11:09:56 am »
Thyroid probs run in my family, unfortuanately my panic attax were not from that. Had it tested a few times . Mine came from smoking too much pot when I was a teenager. Drugs are bad, but its worst when ur  brain is still developing as a teen.

Linda
LB

Offline andrew j

  • Member
  • Posts: 476
Re: feel like i'm dying
« Reply #11 on: January 05, 2019, 04:59:34 pm »
I think you're right about that, Linda.

Offline beto

  • Member
  • Posts: 548
  • "no risk it, no biscuit"
Re: feel like i'm dying
« Reply #12 on: March 11, 2019, 02:09:34 pm »
This is an old thread but here goes.  I had hyper thyroid and low thyroid issues after EOT.  I did some research and found a great deal written about the effects of hepatitis c on thyroid gland. Even one that discussed a similarity of liver and thyroid tissues. So it is most likely the virus itself.  In my case I had sub acute thyroiditis, which they believe is caused by an infection that gets into the gland.  Or, possible auto immune. 
HCV/nonA,nonB acute phase 1975
HCV detected active 1990
HCV persistent chronic diagnosis 1995
1995 liver enzymes mild elevations
1996 Biopsy F2 fibrosis
treatment naive geno 1-A
2000-to early 2015 Viral load 150, 000 to 800, 000
recent liver enzymes before treatment alt/ast 59to209,  Fibroscan F4,cirrhosis
start tx Harvoni 7/11/2015
6.5 week-UD-ast/alt 25/25
9wk-UD-ast18 alt23
10/3/15 completed tx
11/5/15 new fibroscan f0-f1 amazed
6wk EOT UD ast/alt 20/20
12EOT-UD-ast/alt19/21
25wk-SVR! 19/18

 


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