Chronic Vertigo

[maryb]

How much Valtrex did you take @Clerner ?

 

[maryb]

@Mariah = I took up to 6000mg a day of ginger in capsules with high dose liposomal vit c, maybe the mix was anti-viral - it worked somewhat, but I have ongoing daily problems still.

 

[Clerner]

@maryb I took 1 gram (1000 mg) 3x/day. I worked my way up very slowly over a week.

 

[maryb]

I couldn't tolerate Valtrex so was going to try Famvir but can only afford to take 500mg a day, is it worth it??

 

[Clerner]

@maryb I just started famvir on Dec 31st. Valtrex did well but I got terrible depression/anger. Famvir better in that I am less angry/depressed! I take 500x3 per day. BUT, just starting having some vertigo. I am not sure though if it the diflucan I took 2 days ago or antibiotics I just finished 3 days ago. I will have see if famvir is working as well as vaktrex. Yes famvir was 113$ a month!

 

[Clerner]

@maryb I don't think 500 of famvir is enough. Seems like from other posts maybe 1000 might work. I have bad fibro pain so far on 16 days and hoping it ends. But had pain on valtrex too. Smaller pills, but I get stomach pain and bloating too. I'm considering trying 2x 500 a day.

 

[maryb]

Let me know how you get on with the Famvir, if it doesn't relieve some of the vertigo/dizziness then no point in taking it. I've just seen a local GP who's agreed to do some viral testing, sit on the floor with amazement.....so I won't take any until after those tests - have to wait nearly 3 weeks to get the blood taken, NHS at its finest....... I also have some Rfaxamin to take, I thing some of the virus lives in the digestive system too, so having a high bacterial load makes it easier for it to operate there, only my thought.. I have felt better after Rifaxamin, but not permanently so.

 

[Clerner]

Good! I had no idea I had high ebv and parvovirus, and mildly high hhv6! You will feel better just knowing! I also agree about gut issues. I just took some flagyl hoping it would get possible sibo and help IBS! Again the vertigo may be from antibiotics/diflucan. I pray it's not from the famvir not being effective. Valtrex were huge pills and 3x a day is hard. I will keep you posted on famvir and vertigo issues. Let me know about what you find out!

 

[maryb]

I know I have re-activating CMV,EBV and Herpes 1 &2, all were activated last year at this time, and I was so sick. I've been sick for 2 months now so want to see if they are active again, she wouldn't do CMV, but hell its still a result Last years tests cost me £400...

 

[Clerner]

@maryb yes, I have spent thousands on dr's and tests. This whole situation is horrible. Av's are definitely worth a try. I am going to try to reach the 6 months needed for av's to work. After that, it's gamma globulin for parvovirus, as av's won't touch thst. Good luck!

 

[L'engle]

A friend of mine with other autoimmune conditions has had vertigo for almost a decade. She finally got a diagnosis of swimmer's ear and was given an antibiotic that has helped the vertigo somewhat. I don't know specifically which antibiotic though. Good luck, horrible symptom, I've only had it from time to time so far.

 

[maryb]

Ye I must admit my vertigo went away when I had IV Cefriaxone so maybe a bacterial element as well at times. I read about a researcher who said she never saw a borrelia bacteria without seeing an EBV virus in the same cell.......

 

[Mariah]

@Clerner That`s very interesting! I was on Nexavir for more than half a year. Is that roughly the same thing? It unfortunately didn`t have any effect on me though. But hoping the Rituxan will!

@L'engle Thanks! Think I will ask for a referral to a vestibular specialist center not far from where I live where they have more specialised knowledge of the various types of vertigo. I should have been properly checked for this years ago, but one only has energy to deal with one problem at a time, and often there is 500 problems. Sucks, but it`s the truth .

 

[Clerner]

@Mariah I don't think they are the same. Nexavir is a liver derivative that does have antiviral properties. Valtrex, famciclovir, valcyte and a few others are true antivirals. Ironically, I just switched from valtrex to famciclovir Dec 31 and guess what? Mild to moderate vertigo has come back! In my case I'm thinking famvir is not working for me like valtrex or I'm having a " flare" of ebv which always seems to be precipitated by vertigo.

Others in this group are very knowledgeable about medicines and their differences. You should ask them about the differences between nexavir and valtrex.

When all that weird head and eye stuff went away I was a big believer in valtrex!

 

[L'engle]

@Mariah Yes, very complicated. The vestibular specialist told my friend she had 4 different kinds of vertigo. Four!

 

[Mariah]

Thanks @Clerner! Must be awful having it come back after such a long time gone. I am on Rituxan at the moment so the anti virals will have to wait. I think my illness fits the autoimmune theory more than the ongoing infection theory so I will try that first. But I will definitely keep your story in mind if it fails, and I may try your "route." Who prescribed you this? Do you have an M.E. doctor, or do you just use your GP and specialists for these things?

Wow @L'engle, that is incredible! That is how I feel at the moment, that I have 2-3 different kinds fighting for attention, especially after the ear rinse incident where everything also spins on top of all the others. I bet your friend felt good after getting some answers even though the symptom itself is horrible, and I think I will feel better too. Will see my GP next week or the week after that and get a referral.

 

[Clerner]

@Mariah I have an ME doctor, Dr Daniel Dantini who had me tested for other viruses too (have high ebv, parvovirus and hhv6). He has a book out on fibromyalgia.

 

[john66]

I have had vertigo and severe tinnitus since Sep 21. It feels like I live in an alternate reality. Very difficult to bear, can not be in any public place for too long as reflected noise sends my brain into a talispin. Cant stand long enough to cook, so I live on take out and quest high protein bars. Tried Valcyte for a few days and my intestines could not tolerate. Blah

 

[Mariah]

It does feel like living in an alternate reality @john66, and I agree, too much stimulus (lights, sounds, movements) in public places aggrevates it a lot. Wishing you better days!

 

[Clerner]

Yes, it is such an awful feeling! Makes you scared to get out of the house. @john66 you might try valtrex? Maybe less terrible side effects? Good luck, I know how terrible it can be.