Light headedness

[Laika]

I have more feelings of lightheadedness as time goes on.  If I stand, like in line at a store, I really do feel like I will faint.  If I am standing and become engaged in conversation, it has to be short, or I must sit down due to the faint feeling.  I even felt like I would faint beginning in a seated position once recently.  I'm not sure what to make of this.  I avoid stores at crowded times of the day and otherwise just try to live around it.  But am wondering if something is getting out of control.  So far, it has not happened when I'm cooking (although that involves standing), or when I'm walking.

Any advice?

Laika

[dutch_boy]

Dear Laika,
   I don't respond often to posts.... I'm a bit "shy" when it comes to posting.......but I had to respond to your post as I have had for about 7 weeks the same exact symptoms you describe.  I am on week 11/48 with Pegasys and Copegus 1,000mg for Genotype #4 and I've done very well tolerating the treatment so far...of course I feel lousy alot of days/week and the interferon is completely unpredictable when it will "hit" which I've learned to deal with. I take one day at a time dealing with the sides which change all the time.  

With regard to your situation I started to notice about week 4 into treatment that I was VERY DIZZY...especially standing up and when I'd sneeze I was scared I would pass out....especially driving or at the grocery line.  I also had alot of shortness of breath and disabling fatique starting about the same time....but the dizzy spells had me very concerned. I have regular blood work done (every two weeks as I only have one kidney and doctor is watching me closely) and my Hemoglobin dropped very quickly into treatment.  My Hemoglobin dropped to 8.5 and my RBC dropped to 2.6 at week 3 or 4...both contributing to these dizzy spells from this Anemia.  The doctor waited until my week #8 (three weeks ago) to prescibe Procrit to help raise my Hemoglobin levels again which have helped and I'm now at Hemoglobin 9.8 and RBC is 2.8.....my dizzy spells are much fewer now and my energy levels are much improved. I am still short of breath when walking up hills/excercising but at least I'm not hanging onto walls for fear of passing out from the dizziness. My doctor has me taking one Procrit shot/week until my levels get up near 11.5 at which point he will have me take the shot every other week. I am thrilled the dizzy spells have calmed down as the last thing I wanted to do was to reduce the dosage of Ribavirin which the doctor was considering which would have lowered my chances for SVR.
The normal ranges for the Hemoglobin are 14 to 18 gms/Dl for males, and 12 to 16 gms/Dl for females.

What are your Hemoglobin counts?  My doctor says he usually doesn't prescibe Procrit until one gets to about 8.0....but in my case I was very symptomatic very early on at 8.5 and the dizziness was getting much worse.  Please take a look at your numbers and if they are anywhere near mine ask your doctor about it.  Some people don't exhibit any dizziness at 8.5 Hemoglobin but mine was intense..almost constant.  Also your doctor should check your electrolytes as this also causes dizziness(done with blood test too) and mine were fine so he pinned it down to the low Hemoglobin in my case. If you drink too much water it can lower your electolytes too much and cause dizzy spells for some people.  
   Laika, know that IF it is caused by low Hemoglobin that the Procrit works well for these dizzy spells (although not easy to get for some...I was lucky.) I know these dizzy spells can be annoying and frightening when you don't know what is happening with your body.  I hope this helps and I'm sure others will post their suggestions to you shortly as well.  
   What week are you in and how are you holding up other than your dizzy spells?
Hope everyone out there struggling through thier battles with  HVC are hanging in there.....I NOW know what you have all been going through and I'm holding my breath for my 12 week RNA PCR in 1.5 weeks!
Best to you Laika...I hope you pin down your cause for the dizziness soon.
Scott

[Micro2]

I dont know your situation, like whether your on tx or how long, but I do know and remember those feelings. Mine was hemolytic anemia due to the ribavirin. The lower my hemoglobin dropped, the worse it got. Procrit helped some but all you can do is plan for it. Do not overdo anything. I only went out once a day (to keep from going crazy). Usually my wife drove. Stayed away from long trips (1 to 2 hrs and home again). Shopped off peak times. Everywhere I went, the first thing I looked for was the nearest place to sit. Water with me always. Someone with me always. I sat many times while my wife shopped or looked around. Learn to manage your energy as you will only have so much each day. Make sure that your hemoglobin is monitored regularly (if your on tx). Hope this is helpful.

[Docsgold]

I do not remember if you are on tx or have finished.  Have you notified your physician/had recent bloodwork to determine the status of your red blood cell count or blood sugar?  I had several episodes of extreme dizziness and nearly passed out.  Not due to my red cell count, my thyroid medication needed adjusting (was too much).  Please notify your physician and best of luck.

[cbee]

I started experiencing the same thing.  My hemoglobin was at 10 and my doctor gave me Procrit.  It takes a couple of weeks to start working.  My doctor said because of those symptoms they'd rather me start on the Procit rather than lower my dosage.  I was out of breath after walking up a short flight of stairs, standing up too quickly, etc.  I'm sure it doesn't help that my RCB is low and my WBC is 1.8.  I guess if I didn't have these sx the treatment might not be working.

Hope it gets better.

-cbee

[ificu1st]

I am on week 4 of infergen and have experienced the same dizziness.  I almost passed out sitting here at the computer the other day.  And again at work the other night.  I took my blood pressure and it was 90/50 and I usually run high.  I get my 4 week labs done Fiday so hopefully I will get some answers.  In the meantime I have learned to listen to everyone on this site.  Don't over do it, drink plenty of water, and rest often.  My appetite haws been really bad so I also drink at least one protein shake a day. It all helps.  The dizziness is there but not half as bad.  Hang in there.

[Laika]

I am in week 7 of tx with peg/copeg.  My last labs were on 3/31, hemoglobin was in range at 13.  My doc will do procrit when needed, but there has been no indication of need according to the labs so far.  Of course, things can change quickly.  This dizzy stuff has been inconvenient, but only recently intensified to where I realize it could be dangerous, if it isn’t controlled…as in driving, or actually fainting and injuring myself.

I didn’t know this fainting feeling was a side of low hgb, so glad to have the info.  Will get blood work and see the dr again next week, so not long to wait to see if this is the problem.  So far, I have not had shortness of breath or fatigue beyond what might be called “normal” for tx (?).  I don’t know about the electrolytes…the only items out of range (low) on my last labs were wbc’s, platelets and absolute neutrophils.  I have found in dealing with my animals’ health issues over the years that there can always be more than one thing wrong.  

Dutchboy, thanks for asking..I am holding up ok.  Grateful to have a good dr who monitors frequently & will prescribe what I need instead of dose cutting.  Grateful that I have early virological response at 4 wks.  Grateful for this forum that is so informative and helps me understand how to deal with these sides.  It sounds like you are doing well, now that your anemia is in check, and I wish you the very best on your 12 wk PCR.  

Your posts have been a huge help to me.  Thank you for sharing your info & experiences,

Laika

[cuteus]

almost any drop from your normal hgb will cause lightheadness, but docs wait for it to go below "their" normal to treat it. some people seem to adjust to the lowering rbc without Procrit.

[Califia]

Yes, the dizziness, the poor balance, the sudden queasiness, no matter how well hydrated you are....   ain't we got fun.  The only thing I'd like to add is that over time the intensity of the sides will eventually recede a bit.   But there's nothing linear about it, and it's hard to predict what will pop up when, and for how long.   All you can do is monitor like crazy, and ride it out.    Oh, and we all have different baselines when it comes to Hgb.   When mine dropped below 11 to 10.5,  I was gasping like a fish.  Think I started out pre-treatment at 14.   Anyway, my nurse put me on Procrit immediately when I reported the symptoms.  This was at week 12, and twice-monthly shots are holding the line.

[Laika]

Thanks for your details.  It's great to be armed with all the info I can when I go to the dr...he's pretty flexible, and I'm in a much better position if I have enough info to push for what I think is right.  If my hgb is really not that low on the next lab, I should maybe push for procrit anyway, if this faintness continues?  I am a pretty solitary soul...don't have someone to drive me around, etc.  I can deal with the faintness ok as just another annoying side, but wouldn't want to drive off the interstate in a stupor.

Laika

[Califia]

Nor would I!   In fact, your presence would be greatly missed around here.   Btw, now that I'm nearing the end of this little experience,  I'm convinced more than ever of the importance of  acupuncture, movement-based therapies and deep tissue massage to see us through.  If you're too ill to move about and release muscular tension, then please have someone else do it for you.   Consider it a necessary part of the protocol, as necessary as Procrit.  It's so easy for energy (and oxygen) to stop circulating ... and I got into some unnecessary stagnation because I was literally afraid to invest in adjunct therapies for myself.  Just came back from acupuncture and I'm feeling like a new woman,  a total reversal of how I started the day.  Why, oh why, did I wait so long?  Well, because it's not exactly free, and unfortunately there are spending limits.   That said, please do NOT follow in my frugal footsteps.    Regular tuneups during the course of treatment would  help a lot, if and when you can get to appointments, that is.    I hope these durn vapors pass very soon.

[Laika]

I will keep your advice in mind as treatment progresses.  Right now (7th wk), I seem to not want to go much of anywhere and am downright phobic about any new drs, clinics, places, people, procedures.  Thank God, I am not physically ill in any way, except for recently this lightheadedness, which mostly just scares me.  I am used to being quite active, though since treatment, had to slow way down.  Still, I move around...not anchored to a desk.  I am hoping the level of activity that I naturally have in my life will be enough to see me through this time, but if not, will consider your suggestions.  Thanks for sharing them.

I'm so thrilled that my mind has "settled down" from these meds and I am able to read again!!  I just finished my first book since starting treatment, "Don't Lets Go to the Dogs Tonight" --a real gem -- so glad to have reading back in my life.

So happy for you that you're nearing the end of treatment.  Your spirits must be rising with that light in sight.

Laika