Hello, Tomorrow Monday will be the beginning of my 5th week on 3000g daily on Valacyclovir. I became a bit more dizzy at the beginning of the week. After a few days it go a bit better but not as it was during the first 3 weeks of this treatment. I saw my ENT at the University of Miami Hospital on Wednesday. I see him once a month. As always he offered me a steroid shot and since I was feeling a bit more dizzy I accept it the shot. I have taken dozens of shots and I always find some instant relief but it never lasts more than a couple of days if that. Since they go through your ear drum I always experience a few days with a bit more tinnitus but once the puncture hole closes I'm ok. I'm not sure this time the shot help me at all. I'm going to take a break from them for a while. My hearing is really good on both ears. The ear fullness only comes for a few seconds and then goes away. It usually happens right after I eat (I do the very low sodium for years and cook all my meals). Does anybody here experience the ear fluctuation within seconds of eating??? Today I started my diuretic again. I had stopped using it for a few month but since I did great with it before, I figured it wouldn't hurt. Opinions????? My symptoms are not bad. I can do anything I want except eat everything I want. The only thing is that the dizziness makes me really tire. Do the Antivirals make you more tire than normal??? I will continue on the 3000 g antivirals for at least another 2 months before lowering the dose. My ENT does not believe they will help me but is not against me giving them a try. he didn't write the prescription. I'm doing this treatment with my GP willingness to help and with the guidance of people on this forum. I will have a blood test in the next few weeks to check that everything is ok while using this antivirals. Lastly, A few years ago when I had a bad attack I experience the dizziness or vertigo only when my tinnitus was really loud. It was also then that my hearing was really bad due to the loud tinnitus. Now my tinnitus is very very low. I often can't hear it if there's noise like in my classroom or just if i'm having a conversation. So since the hearing is so good (hearing test was almost normal in my bad ear) and I hardly have any fullness why am I dizzy? Don't take me wrong there's stuff going on inside my ears but very mildly. Maybe it's just the antivirals working their magic I just want my body to make the dizziness go away as it did in the past. Thanks, Karina
Hi Karina, I'm a bit confused by what you're saying. In a previous post on Day 17, you said that you were feeling much better. Are you now saying that you've gotten worse? Or are you saying that it plateaued and you are seeking something to get rid of ALL of the symptoms? Keep in mind that most of us who found relief did so on a slow basis. Vertigo goes first, then the rest follows after several months. The virus, if it is a virus in your case, has done a lot of damage. Just beating down the virus does not eliminate that damage. You need time to heal from it. Think of it like a bullet in your body. You remove the bullet, but the wound still needs to heal. You also said in a previous post that you're taking 1000 mg per day of antivirals. Is that the case? Why not go back to the max dose since that seemed to help you previously? Also, steroids REDUCE the activity in our immune systems. So you're essentially taking two things that could counteract each other. I personally would take 3000 mg of Valtrex along with 3000 mg of lysine (on an empty stomach 3 times per day) for at least 3 months before giving up.
Another thing to keep in mind is that dizziness can be caused by many things. You may have a minor flu going, or something like that. You could also have MAV, if certain foods are bothering you. Try also going on the migraine diet.
Scott Tom, Thank you for your reply but I think you are not reading my post correctly. I never said I lowered the dose. I said that I'm taking 3000 g and that I won't reduce the dose yet. Also, I titled this week five on valacyclovir. I said that I got more dizzy at the beginning of the week and that in a few days it got better but never as good as during the first 3 weeks of the treatment. I'm aware that steroids lower your immune system but mainly if taken orally. I didn't think injection lower the immune system as they are local and don't need to go through your system. So yeah the first 3 weeks were better than the 4th week. I do the migraine diet. My question is if people feel ear fluctuations within seconds of eating. I can't take L-Lycine because it upsets my stomach as I said before. Sorry if I confused you. Karina
Karina, as I have shared, you're about a week ahead of me in your antiviral treatment plan. I have tried to keep aware of your updates in anticipation of what I might expect to experience. Fortunately for me, I am able to tolerate the L-Lysine, which I have been taking for last 13 days. That being said, I have not noticed any correlation between my meals/eating and the occurrence of my tennitus fluctuating. In fact for the last few days, my tennitus has been rather quiet though still present (vs the first week of antiviral use, as well as before I started this course of treatment). I regularly see Scott Tom's postings and have appreciated his inputs. Are there others who are further into the antiviral treatment who might shed some light on what to expect, as you have shed light on my expectations?
I've been on Acyclovir for 5 weeks and took Llysine prior to that and think I felt extremely fatigued most days but now have my stamina back. So for me I'll wait and see if the Acyclovir keeps the vertigo at bay. I continue to take Meclezine for dizziness and nausea as I believe it usually heads off vertigo for me. On this forum I've been encouraged to persevere which has been excellent advice for me and most of the time I don't feel sick or discouraged.
I misspoke, I've only been on Acyclovir for about 3 weeks. I have frequent trouble thinking and I've been getting down somewhat lately because I lost my job. I listened to a relaxation exercise on depression on you tube by belleruth naperstak which I thought was extremely helpful and will listen too again in an attempt to train my brain to stay positive. Physically feeling pretty good.
Marie, sorry to hear about your job, but I"m happy to hear you're fighting the depression. Dont give up the fight!! Hope you continue to be in good health physically.
Thanks Forever grateful. What a positive online name. I took to a minute to take stock of all I have to be grateful for. I also put a call into a life coach as I have felt useless at times since I lost my job. I do believe that I need to learn that getting my self esteem from my job isn't real or lasting. Otto Dr wanted me to take Trazadone for brain fog. Maybe he thinks it's caused by depression. I hate taking pills. he agreed I could start Acyclovir and as needed Hyosciamine in addition to as needed Meclizine an see if they cause any side effects before adding Trazadone. For a non medication approach to changing my depressive thoughts I did ride my bike 5 miles today. can I ask do you get depressed?
Hello Marie. Trust me, I have to stop and take stock for all that I am grateful as well. I try to by very thankful for my good days/hours and am very hopeful that I will continue to improve. I do get down from all of "this", have the occasional crying episodes, but I dont feel I"m clinically depressed. I do believe that positive thinking begets positive thinking and so on....but I also know how difficult it is to keep that train of thought while dealing with this life-altering illness. I understand about not liking to take medication, so I havent agreed to a lot of the meds my one Drs wanted me to try. If the antivirals/Lysine/etc dont work for me, I may have to succumb to other approaches....but I"ll cross that bridge when I get there. Congrats on the bike ride. I hope to hear you're out and about more frequently.
forever grateful I'm grateful for this forum with supportive people like you. Thanks for your feedback and the reminder that positive thoughts beget positive thoughts.
I heard something on a Belleruth Naperstak relaxation video on You tube that I'll pass along in case anyone else here struggles to see the positive. She has an affirmation - I am healthy, strong and vital (or something like that) so I'll try to remember to tell myself that throughout the day. forever grateful - how are you today I'm so thankful to all of you here who remind me someone does get me and it's not "all in my head".
I'll say it is "in your head" but not the way some may think ..I agree about the comfort in hearing/talking with others who actually relate what we're going through. Even my husband, who has been a trooper, doesnt "get it".....but I really dont expect him to fully understand. I know it's been hard on him in dealing with it "all"....but unless you live it, it's hard to really comprehend the magnitude. As for your question, I am doing ok today....even a bit better than "ok". The last couple of days have been pretty good, with only moderate/mild pressure,lower tinnitus levels in both ears and even fairly mild dizziness that comes and goes. My noise sensitivity has been at peak levels, but it hasn't sent me into full blown episodes, etc. (though it's just hard to even carry on normal conversation). However, I have total faith that this antiviral approach will be my answer. Ps Marie...i love your new affirmation. Keep up the good fight.
forevergrateful sorry you're still experiencing symptoms. i only have mild dizziness today. thanks for the encouragement to keep listening to relaxation on you tube. i have a job interview on Friday. i have mixed emotions but mostly want to get the job and try my best. If I do get hired I will disclose the diagnosis. If i get dizzy at work i don't want t hem to think I'm taking drugs.
Marie Good luck with the interview. I hope it's something you will enjoy doing. As for my progress, I'm only 36 days (at the start of my 6th week)....I figure I'll be on this course for at least three months of high dosage. I now know to expect a flair up or two along the way. At least they are milder ones so far. thankful for that!!
Thanks forever grateful. I plant to prepare for the interview by continuing meditation on You tube and see if they have any videos on job interviews. Also will search Meniere's and Americans with disabilities act which was recommended here.
I just started to take Valacyclovir today along with Prednisone and I have been on Dyazide for a handful of months. I can say that after taking the diuretic my dizziness went away but the tinnitus has gotten way worse. I am hoping that the mixture of steriod and antiviral will help everything. I have gotten dizzy numerous times at my work, had to take a nap in my car and also explain to everyone what is going on.