Hep C Discussion Forum

Canuck wrote:

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Good point, experience and question Observer! Tig and Wendy too, always good to go back to square one when trying to help somebody suss a problem, from how to approach it in dif ways, to things as basic as diet and water intake. I can see that ALL of us are trying to put our best thinking caps on!   I too was reading between the lines and wondering about the lack of appetite and the lack of eating, (including water intake) and your complaints of weakness/strength, trouble walking. Weight loss, dehydration, being malnourished can ONLY make things worse.

Sorry slavik, bear with me, I just end up having more and more questions .... what is your weight in relation to your height?? What should your normal weight be and how much weight have you lost? How malnourished are you? What is your hemoglobin at?

Is your photophobia constant, and how severe is it? (Is it mild, or so severe that you are forced to literally live in constant dark, and wear sunglassess?) Aside from photophobia, do you have any other visual disturbances (like double vision), and do you also have any nausea and or vomiting, tinnitus, loss of balance that is most strongly/directly associated with and accompanies the "dizziness/spinning" sensations?

Are you able to be up and about the house to take care of things and able to carry on and muster through to go out and do what needs to get done, or, is the dizzyness that profound, that you are unable to move about freely and have to spend much time of the day lying down?

Sorry for asking so many questions, but it is just hard, from here, to get a good sense of how profound/debilitating your symptoms are, and trying to guess around at what the most likely contributing culprits are.

No prior hearing loss or long history of ear infections?

If the dizzyness is sudden and episodal (intermittent), do you get it at any particular time, time of day, with certain activities or movements, or is it just low level dizzyness that is plaguing you a lot.

How are your sinuses and teeth? How is your blood pressure?

I was looking up for drug sides for daa's and found the standard stuff, but found blogs too, people complaining about sides on this one or another drug. On some harvoni blogs people often did complain about headaches (while on treatment) a fair number with some associated dizzyness, none about photophobia, but rather discomfort/pressure behind and about the eyes, mostly associated with their headaches, they too had frustrations in having various docs disagreeing with them that harvoni was their only causative factor of these things! You have company there too!  

I am still holding out and hoping these symptoms WILL start to decrease for you, all on their own. I sure hope it starts lessening soon, for your sake. C.

-- Edited by Canuck on Sunday 12th of March 2017 09:23:17 AM

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 Hi Canuck

 You asked me about my teeth, can you tell me why?  I now find out that not all is well with my teeth.

Thank you.

There may be options available, even if you missed the deadline. Here's one place to begin if you haven't tried it. I'll keep looking for some answers.

Health.Gov Deadline

Everybody is putting good thought to this. You and Joann seem to have been sharing some of the same disconcerting, mysterious, con-frusting symptoms that many other harvonions (on those blogs) were trying to figure out and get to the bottom of, and could not get any attention to.

You are doing a mighty fine job of putting up with all my endless quizzings Slavik! I was just hoping some sign you have, would lead suspicions to clearer directions (or other contributing factors).

I will just assume your hemoglobin has probably been normal, and you and Observer determined there are not any other meds in play. Good to know these many details, as they can help to see if they tip the balance to indicate more, or some other better-defined malady(s) which can be part of what you are experiencing.

Good to know you are still of fairly normal weight, normal BP, bloods apparently OK, teeth and ears OK, your degree of abilities.

Good you portrayed the "nuances" of your dizzyness/spinning in more detail, as had they been very debilitating (flat on your bed, can't get up, nausea/vomiting, etc.), strongly associated with any of the other symptoms I had asked you about, then my mind would have gone to vertigo/inner ear things (or other things). But none of what you are connecting is leading me to anything as simple as BPPV or a simple Epley's manouver fix! You are not fitting the picture of any other disease process going on. It stills seems like you are being badly affected by what others have also experienced some of, during and after HCV tretament. I don't know WHY we have to have these things!!!

The ENT may or may not reveal anything outstanding. Maybe it WILL turn out true that more time will stop these things. But you do need a really good attentive doc, on your side, like wendy's guy,  to help you deduce and get you through this.

I too know the insanity provoking thing called tinnitus, still have it, diplopia too, but I had it solidly and firmly entrenched eons before I ever knew I had HCV, let alone treated for HCV!

Understand completely what you say about these events contributing to depression, I too was offered anti-depressents, on several occasions in the past, (in the last years leading up to the discovery of my HCV) they were offered for my seemingly "unexplainable" complaints!! (believe me I had self-diagnosed everything from housemaids knee to MS to brain tumours!) ... hm, turns out, all I truly needed was to be finally diagnosed as HAVING been packing HCV for some 40+ years!!, nice, I finally got to have the right Rx offered to me, new daa's for HCV and to finally be able to get it treated! When I had lingering "complaints" post-treatment, again the insult of them "not understanding" - "hm", they would say, "maybe you are depressed"? Gee, YA THINK!! Dr. Brilliant! For some of us, this journey has been one of the hardest, most harrowing kind of things we have gone through - not all of us want to do more bottles of pills to experiment our way out of the territory. 

I am improving slowly, every day, in many ways. I am so grateful to have been finally diagnosed and treated and cured, no matter how hard I found it all, both in geting there and then recovering from it. I am so lucky to have had the very helpful support of my partner all through this, it helped immensely, I hope you have a significant other or a good freind to lean on for support too. We are always here for you.

I am betting you are going to start into recovering more soon too. What do you think? C.

Canuck wrote:

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Good point, experience and question Observer! Tig and Wendy too, always good to go back to square one when trying to help somebody suss a problem, from how to approach it in dif ways, to things as basic as diet and water intake. I can see that ALL of us are trying to put our best thinking caps on!   I too was reading between the lines and wondering about the lack of appetite and the lack of eating, (including water intake) and your complaints of weakness/strength, trouble walking. Weight loss, dehydration, being malnourished can ONLY make things worse.

Sorry slavik, bear with me, I just end up having more and more questions .... what is your weight in relation to your height?? What should your normal weight be and how much weight have you lost? How malnourished are you? What is your hemoglobin at?

Is your photophobia constant, and how severe is it? (Is it mild, or so severe that you are forced to literally live in constant dark, and wear sunglassess?) Aside from photophobia, do you have any other visual disturbances (like double vision), and do you also have any nausea and or vomiting, tinnitus, loss of balance that is most strongly/directly associated with and accompanies the "dizziness/spinning" sensations?

Are you able to be up and about the house to take care of things and able to carry on and muster through to go out and do what needs to get done, or, is the dizzyness that profound, that you are unable to move about freely and have to spend much time of the day lying down?

Sorry for asking so many questions, but it is just hard, from here, to get a good sense of how profound/debilitating your symptoms are, and trying to guess around at what the most likely contributing culprits are.

No prior hearing loss or long history of ear infections?

If the dizzyness is sudden and episodal (intermittent), do you get it at any particular time, time of day, with certain activities or movements, or is it just low level dizzyness that is plaguing you a lot.

How are your sinuses and teeth? How is your blood pressure?

I was looking up for drug sides for daa's and found the standard stuff, but found blogs too, people complaining about sides on this one or another drug. On some harvoni blogs people often did complain about headaches (while on treatment) a fair number with some associated dizzyness, none about photophobia, but rather discomfort/pressure behind and about the eyes, mostly associated with their headaches, they too had frustrations in having various docs disagreeing with them that harvoni was their only causative factor of these things! You have company there too!  

I am still holding out and hoping these symptoms WILL start to decrease for you, all on their own. I sure hope it starts lessening soon, for your sake. C.

-- Edited by Canuck on Sunday 12th of March 2017 09:23:17 AM

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 Hi Canuck.

--My water intake is really good, at least 7 glasses a day, food is another matter, maybe 1800 calories at best but Im sure its lower.  Photo phobia is something that I came to call it, because I am not sure what to call it tbh.  The best way I can describe the vision problem is it looks as if I have not slept for a day and the way everything seems too bright and slightly swimming, hard to concentrate etc.  All of this including light dizziness is constant.

--I do have a very strong tinnitus (developed after treatment) my head is buzzing, then when it all slightly calms down fairly strong hissing sound.

--No vomiting just no appetite. 

--No previous cases of tinnitus or hearing loss or infections in that area, but I will soon make an appointment with the ENT.

--I think I have lost a lot of muscle mass but gained in fat a little bit.  My weight to height ratio is within a norm.  (I used to work out very heavily thats how I know that I lost a lot of muscle mass).

--I am ok doing light tasks, just my brain and eyes get tired fairly fast (10 hours, and I feel like I really have to sleep).

-- Sinus is horrible, stuffy all the time, teeth good.

--Blood pressure is really good (always around 120's - 70's)

Thank you for replying.

Observer wrote:

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I noticed you said you have/had depression?

Might I ask if you are on any medication for that?

I have a child who,as a teen, was on depression meds for a short time and extreme light sensitivity was a symptom that troubled her for a while, it turned out, she needed a different medication.

I hope you can get a Dr to help you with your symptoms.

xox

A

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 Hi Observer, Unfortunately I still have a very strong depression, however I chose to not take medication and never have.  The onset of depression is due to the fact that the symptoms are ongoing and very debilitating.

Thank you very much for your reply. 

Another thing comes to mind. If you were fired from your position because of illness, you have every reason to contact the NLRB. The National Labor Relations Board may be able to help you get your job back, if you want it. Employers have to be very cautious and rightfully so, when dismissal is over illness or disability. Check it out...

I'm curious about your daily water intake. Did you hydrate adequately during and after treatment? Headaches often occur when hydration suffers or is simply inadequate. Try upping it to 3-4 liters a day again and see if that helps. Examine your diet, too. Your metabolism has gone through some big changes, what was once A is now B and you'll find out what works. It took a long time, years, to witness the improvements I expected. I won some, lost some over the years, and now I'm feeling the "Old Fogie", big time! Living life on Life's terms...

I agree, you need to find an Internist that you have a good rapport with. Let them know you're coming in to talk first. If you don't have a good feeling, move on to another. A good Primary Care doc is priceless if you can find a favorite. Keep at it and leave no stone unturned, you'll get there!

Another thought is to go to a clinic that uses a sliding pay scale and get a complete bloodwork up done. I was on Harvoni and would say it took at least 6 months - year for the brain fog to get better. Now it is just the normal aging process. I feel like I really have no other lingering effects. Whatever is wrong now is the onset of menopause. 

My primary care doc is at a health center that sees homeless people, low income etc and I have a job with insurance. I feel I get very good care there. My pcp is very thorough and I was skeptical but have been pleasantly surprised. Can't hurt for you to check into. 

wendy

Oh dear, that is bad (job and insurance). That is not at all good. Complicates and adds to everything! The stress and difficulty being in this situ must be adding stress and suffering to what you are already experiencing. Glad you at least got to the ophthamologists for her "ruling out". Have any of these docs been looking in your ears?, asking you/quizzing you about headaches/inner ear things?? I would still pursue and exhaust these possibilities. How bad IS the dizzyness??, are you getting any profound loss of balance, is that the number one thing which caused you to loose your job, or was it just a culmination of everything that ultimately stopped you from working.

Sometimes inner ear things, even various forms of headaches/migraines can cause dizzyiness, and visual disturbances (but so can many other things!!). How are you going to be able to get medical help without work and health coverage. It must be a tough go for you right now. C.

Hi Slavik,

Sorry for your symptoms, but VERY glad you have been cured of HCV!

Doc's will do that, (shrug shoulders and refer you on) when they cannot answer you.

Play the game - I don't now what "other" kind of docs have seen you, but if you have not seen any of these other kinds of specialists, then I would consult with them in seeking answers for your continuing symptoms.

Photophobia (light sensitivity) one would think it would resolve, or at least improve and not be lasting this long? Have you been to an ophthalmologist (not just an optometrist) to explain all your history and symptoms to, to have a thorough eye/retinal/cone and rod/exam? The ophthalmogist may reveal nothing, and you can then ask to see an ENT (ear, nose and throat specialist) for his exam and assessment, again recounting all your symptoms. 

If things do not resolve on their own, over a bit more time, then you don't have many choices in trying to find answers for it, except to go and see and bump heads with all these other kinds of specialists to help "rule out" any reasons for what you are experiencing.

Migraine/headache specialists, inner ear specialists.

There may be multiple and DIFFERENT reasons for each of these things you are experiencing, and they might just all disappear. You may have multiple issues going on, which makes it hard to separate reasons for one symptom from another symptom.

Are you getting headaches/tinnitus/earaches? Nausea, weakness, loss of balance with your dizzyness? Are you feeling well otherwise? Been plagued by any other maladies/infections? No other known long term ongoing chonic health issues? BP/cardiac issues? Weight loss? Are you well nourished, and have you regained full strength ad stamina? Do you have allergies? Are you on any meds? 

I have no idea if you have "any other" things going on, which may lead you to a "certain direction" to check more on.

I would stick to the most obvious and seek assessments from an ophthalmologist and an ENT specialists first, if only to hopefully help you rule things out.

My fog was slow slow to improve, and as Tig intimated so was his fog, but we are old fogies, and you on the other hand have lovely youth in your favour. Chances are these things will in all likelyhood improve for you, but in the meanwhile, they would bother me too - that's what i would do, use specialists to try to rule out good reasons for them.

What country are you in?

Please do keep us posted.  C.

Hi Tig, thank you for replying.

The drug was HArvoni

Doctors just shrug their shoulders and keep on pushing me on to the next one.

Liver is fine no damage and never had any damage.

I am not sure about SVR all I know is that I am virus clear.

Hi Steve,

Sorry you're feeling so poorly. What does your doctor say? I need more information from you. What type of treatment drugs were you on? Did that include Ribavirin? If you could provide some things like your original genotype, fibrosis stage and any recent blood work will help us provide you with a better informed opinion. I assume you achieved SVR?

The brain fog can be very severe at times. The more liver damage from this disease seems to make it worse and/or longer in duration. It's been almost 4 years since I finished treatment and I'm still confused. That's what my wife tells me all the time.