Do any of you guys have cold sores (herpes) going on with this? I have it unfortunately and when it strikes hard, I will literally wake up on another planet and have intense visual vertigo going on for a day or two while it is coming on (like now). The last 2 weeks of anxiety has set it off just for a little more icing on the MAV cake. So is the MAV reaction to herpes simply because it’s a viral infection? Is herpes somehow attacking the neurology in my head and stting off vertigo attacks while it’s active? Is herpes somehow connected with my own dizziness from the days of VN? I really don’t know. Sure, colds and other viruses will ramp up MAV but they never wipe me out quite like herpes does – not even close.
Interested to hear if anyone else has this happening, or if you experience a difference between herpes and a common cold for example.
Thanks … Scott
I know that a lot of people over on the Menieres site are using Antivirals to control their symptoms. When I asked my Neuro he said he has never prescribed Antivirals for Menieres, so perhaps there may be something else going on with herpes that can affect the balance system as well. I know that when I feel a cold sore coming on my rocking seems to get more intense. Interesting if there is a connection.
As you know they have diagnosed me with ME. A lot of research says one of the herpes viruses or some sort of virus is implicated in ME, latent virus. We know that once you get one of the herpes viruses they stay in you and keep coming back. The institute of Nevada, Judy Micovitch is doing a big study and found the XMRV virus in 67 per cent of ME patients. The studies in Japan replicated this but UK didnt, so she has decided to do her own study over here, asked for 300 volunteers and I am in it. The blood draws started last week. I gave 4 tubes of blood near London last week and hopefully we get our own personal results in 3 weeks.
They diagnosed me with ME when I had exhausted all the consultants with the symptoms, the MAV, ear stuff (maybe menieres, which they say can be auto immune or virus ), I have some auto immune stuff going on, the fatigue and sweating after exercise, etc. ME is just a name. I notice that some, but not all, on this board with the MAV, have other stuff going on.
The study sounds very interesting. Please let me know what you find as it all progresses. I’d love to know just where exactly herpes is hanging out in my system and whether it had something to do with the VN in 2003 –- or was the VN.
Someone sent me this today:
[size=130]Insidious effects of the Herpes virus[/size]
I have spent over 25 years with severe headaches. They come in the form of electrical storms in my head, located in the same spot in my head. The spot begins behind my left ear and moves as it progesses to the top of my head behind my left eye. By then my head feels black and blue to the touch. I have seen countless specialists over the years, none being able to give me a diagnosis other than they might be a form of cluster headaches. Two days into the most recent one, I felt the need to go to my physical therapist, thinking it was caused by a pinched nerve in my neck from laying on it wrong.
After explaining my headache symptoms, she asked me if I was familiar with the herpes virus? My jaw dropped as I am intimately familiar with the virus, having had it for as many years as the headaches. She explained that the virus likes to hang out behind the ear and eye, travelling via the nerve endings and those electrical firestorms are symptoms without any outbreaks on the skin. I immediate started taking my Valtrex and lo and behold, the firestorms are subsiding quickly and are almost nonexistent one day later. She had also asked if I had a large dose of dark chocolate, alcohol, or soy recently. I had just celebrated my birthday with amber beer and a lot of dark chocolate cake! I bought a bag of soy nuts the following day and had been munching on them as well. She said these foods bring on an outbreak. My previous episodes over the years have sometimes lasted for weeks and have required hospitalization to manage the pain. This present episode has come and gone in a total of three days. I am so grateful for her knowledge and hope I have helped others in sharing this story.
I was really upset when I saw this because my boyfriend has cold sores, since he was little, he got it from his parents, and I’ve been scared to get it from him. Well, I just found a sore on my lip today. I was worried already because I just had swollen lymph nodes and that’s a sign you have it.
Well, anyhow. I probably have it now. Does it include the cold sore herpes? I have enough to deal with.
I don’t think you need to worry.
People are just trying to work out if herpes of any kind,
can have an impact on making their MAV symptoms worse.
Just make sure, while you have them, that you don’t kiss youre children (if you have children).
While you have them, they are highly contagious.
Hey, Scott, I have had vestibular migraine since age 10 and herpes simplex 2 since age 24. I wasn’t exposed to either type of HSV until adulthood, so my infection is much more severe than others’. I’ve suffered HSV meningitis and myelitis, and now herpes likes to hang out in my ears. I was already very limited by vestibular migraine, and HSV just hosed what was left of my vestibular system. I get tons of outbreaks from the top of my head down to my fingers. I’ve even had HSV in the eye, auricle, and no doubt in the inner ear nerves. They don’t progress to breaking lesions. Instead, I have to deal with the neurological and vestibular garbage when I’d much rather have a skin lesion. If they come to the skin surface at all they look like mosquito bites, but that doesn’t tell a fraction of the story. The neurological and vestibular symptoms are just out of this world. They are so miserable. I have now just been able to sit up after a month of vestibular neuritis. I was waking up in the middle of the night from spinning vertigo. Nauseated, vomiting, blinding headache, fever, etc. I also have trigeminal neuralgia from HSV, and TN and vertigo usually go together for me.
One of my friends from college had repeated VN of “unknown etiology”. She would be down for 1-2 days with intense vertigo, vomiting, and would have to go to the infirmary for meclizine and sometimes IV fluids. She’d recover fully from each episode. This happened about 1-2x/year. She also struggled with very visible cold sores (usually multiple all over her lips and chin on one side), and I’m convinced the two were/are related.
I found some of the VN/HSV link studies cited in this article helpful (well, the ones I could get access to):
Has anyone else experienced vertigo or worse vestibular migraine symptoms during HSV flares?
So my longwinded response is: I definitely think the VN you experienced in 2003 could have been from herpes. How often do you experience outbreaks? Do you take antivirals? I see an infectious disease doctor who just shrugs at me and tells me to take the maximum dose of antivirals, which I already do. That and a 12-day pack of steroids. There are definitely immunological and inflammatory problems at play in my case, but we (well, I, since the doctors don’t seem very interested) haven’t been able to figure out what. Perhaps you could try Valtrex or Famvir for a few months? Best wishes.
I neglected to mention that the reason I think my college friend’s recurrent VN of “unknown etiology” is from HSV is because the attacks were fairly regular, 1-2/year, and ONLY caused vertigo and vomiting. She had no other symptoms. She presented with the clinically apparent signs of cold sores. I think the likelihood that her VN was from reactivation of the same virus (luckily for her, latent most of the time) is far greater than having had infections from different viruses that ONLY caused vestibular symptoms during each bout.
I think HSV is not an issue for most people with vestibular migraine, but in a very small percentage, like me, it can be a huge problem. It really decimated my vestibular system. I couldn’t be in a car AT ALL. Even closing my eyes or trying to navigate a dark room caused vertigo (not just imbalance, but whirling, then spinning).
I would appreciate your input if you have time to read some of the links in my previous post. Thanks so much.
Serendipity, since your issues don’t involve actual breaking blisters, are you saying they are shingles-like, caused by herpes zoster? I am so incredibly sorry for everything you’ve suffered…
The information linked in Serendipity’s post above is fascinating! I recommend reading through all the way to the end. Most notably, see certain passages copied below:
“For chronic and recurring vestibular neuritis and its derivative disorders, Meniere’s disease and benign paroxysmal positioning vertigo (the latter has more than one etiopathogenic pathway), there is evidence that long term antivirals are effective but dosage is not specified., The notion that recurrent vestibular neuritis is Herpes-Simplex-associated is growing. A literature search on PubMed with “vertigo herpes” found literally dozens of references, many of which conclude that neurotropic viruses like HSV likely play a role.,,, Many other references argue for and against as would be expected.”
“At least since 2001, the literature has been showing a link between vestibular neuritis and Meniere’s disease. In chronic vestibular neuritis, the onset of the above symptoms is followed commonly by fluctuating vestibular complaints on a daily or nearly daily basis. Motion intolerance is a common additional symptom and seems especially like in persons with persisting complaints out of proportion to findings on vestibular function assessment. Many notice a residual rocking-floating sensation which we presume to be due to otolithic organ involvement; otolithic organ dysfunction is a well-known consequence of vestibular neuritis.,, While these patients commonly walk well, a common complaint is a sensation of not feeling well balanced or feeling drunk.”
“In summary, a growing body of evidence suggests that acute viral vertigo syndrome is viral, that the most likely viruses to do this are herpes family viruses, and that recurrent and chronic vestibular neuritis may benefit from use of antivirals. There is at least class IV evidence that anti-herpes medication is of value in managing chronic and recurring viral vertigo disorders, quite separate from single-event acute viral vertigo which typically resolves with supportive care, sometimes more rapidly with short term steroids. It is for these reasons that we have been using antivirals for chronic or frequently recurring vestibular neuritis since 2001 with strong clinical reason to believe that for many but not all patients, this is highly effective.”
This information is from a link to the Tampa Bay Hearing and Balance Center. This website also has other really interesting material on vestibular issues.
Scott, I know you originally started your post in 2010, but I am wondering the same thing as Serendipity: Have you trialed high-dose antivirals? It makes me wonder if those of us on this board should discuss with our doctors trying an antiviral, especially those who complain of rocking or floating. (See these symptoms referenced in the linked article.) The article does mention certain antivirals that have worked better than others, in the authoring physician’s experience.
Hi, Kennedy, thanks for your kind words. My lesions aren’t typical of the herpes simplex lesions that are more like groups of small blisters (plural) that break. Instead, mine are huge single mosquito bite-like bumps that don’t blister or break. They are coin-sized raised bites that do not produce fluid (sorry to be so blunt) and, therefore, do not test positive for the virus on cultures (however, I am repeatedly IgG positive to HSV-2). This is why my infectious disease doctor doesn’t believe HSV-2 is causing almost all of my problems. I believe some people suffer the neurological problems of herpes without dermatological manifestations. After all, HSV is a neurotropic virus that also happens to have dermatological manifestations–NOT the other way around. In fact, many (most?) people with herpes meningitis have no blisters and no history of herpes blisters. I had chickenpox (varicella zoster virus) as a child, and I had tons of classic VZV blisters (not to mention some skin scarring) from that but no neurological problems that I know of. I definitely think lack of exposure as a child is a major issue. And HSV-2 is by far the more virulent of the 2 simplex strains.
HSV is the culprit in most VN, particularly if the VN recurs. I would think any person who has had VN more than once could be a candidate for antivirals. I would bet my livelihood on HSV being the sole causative factor in mine and my college friend’s VN.
Thanks for picking out the most relevant studies. If I can use the computer more later, I’ll be back with more.
Kennedy, I just saw your follow-up post. I can only speak from experience, but HSV VN causes a very specific type of dizziness: vertigo. You’d know it if you had it. The room would be spinning so hard you can’t tell what’s what visually. You would vomit or at least be nauseated. You would not be able to move your head let alone stand or walk. You would have to like perfectly still. In my case, for hours, all night and into the morning, and just as you think it’s let up and you try to move around…it’s back. You would literally be bedbound, not just housebound. Sometimes your hearing would be alternately diminished vs. enhanced (example: the sound of dishes hurts my ears). I had a well-documented history of vestibular migraine for almost 15 years before this. When the acute HSV-2 VN “passes,” it leaves residual damage and intensifies the VM rocking 100x and leaves head pain/banging/nausea at the back of the head concentrated at the base of the skull and neck. That’s where I am now. Gripping the seat at work to keep from falling off, rocking off the toilet, etc. Anyway, my point is I don’t think antivirals would benefit those who don’t have clear VN with vertigo. I don’t think it would help the rocking unless the VN made the rocking worse. A simple IgG test would determine with reasonably good sensitivity whether you have type 1, 2, both, or neither, and whether it would be worth it to try antivirals.
I do wonder about this also. I have MAV, Trigeminal Neuralgia and earproblems. A year or so ago the doctors checked my blood; they found out that I have HSV1 (the one that give you cold sores) in my blood that stays active all the time. If they are linked, I don’t know, seems like it though. There is a link with something somehow if you ask me…