Dizziness/vertigo just ebv or pots?

[halcyon]

Thanks. Wonder if I should be tested for enterovirus? Just read that valtrex (starting Tues) causes dizziness/light headed. I'm going to be in big trouble! I will titrat very slowly and see how it goes.

I would. If you're close enough to the acute infection then there are accurate tests available.

 

[Research 1st]

Woke up Oct 17 and put head to side/back and had severe spinning(vertigo). This has continued everyday since. Dizzy when standing, but spinning with head movement (mainly back and to the right) when lying in bed. Made me nauseous at first but have no gotten use to it! Is this POTS or just part of high ebv titers and active ebv? Worth getting tilt table test? Thanks for any advice.

Hello.

I've got POTS and ME, so yes I'd advise a TILT test if you have postural tachycardia and other cardinal symptoms. Due to POTS I'm always dizzy and due to ME I always get infections and thus chronically get viral vertigo which is horrible!

Dr Edwards on this thread sensibly recommended some tests and I'd go with these for sure (If you can manage them), however if you can't get out the house, then you can't have the tests. So in the mean time, I was thinking what's helped me, and one of the ideas may be of some use. NB: There are many other reasons, to consider, these are just some I've found useful as a PWME/POTS, which is a very complex problem to manage from day to day.

Number 1
Check your medication isn't causing the vertigo symptom (E.g. key culprits are beta blockers/Lyrica and other epilepsy/pain control meds). If agreed by a doctor, you can sometimes be allowed to stop meds slowly, and then try another variant. If necessary and able (costly) you can try this in hospital if it's a very important medication. Many hospital admissions (A&E/ER) are due to drug reactions, they don't have to be life threatening, but they can be life affecting.

Number 2
Check you drink enough water (many PWME forget to drink or are too weak to drink at least 2L of clear fluids a day). You can also measure the ability of your body to retain water by measuring ADH (Anti diuretic hormone) and Aldosterone which can be affected in ME/POTS. This is important to mention, as you can literally pee out the water before you absorb it properly. Sometimes PWME CFS develop Diabetes Insipidus. So look for lots of clear urine. Excessive urine output ( ++ thirst) can also be a sign of undiagnosed diabetes.

Number 3
Check your blood pressure during dizziness event. Note if you're stressed, your BP will usually be elevated. It's if it's low you want to note, also if it's low despite being anxious or stressed. Note that even with normal BP, PWME/POTS can feel faint. This may be due to reduced blood flow to the brain. (BP cuff is on your arm obviously and unable to measure brain blood flow).

Number 4
Note what you were doing during attack. For example if the vertigo comes off during/after peeing, it can be a neurological condition called Micturition syncope. I have this can it can cause sudden onset balance loss, even in bed.
When in bed, I pee in bottles and not long after the room is spinning around. Not nice, and it ruins your sleep too. Also in autonomic dysfunction (which I have) I get this randomly when I eat. So you're 'OK', eat the first meal of the day and get really nasty vertigo, simply eating a sandwich. The only thing to try and do, is to eat smaller portions, so you get less blood pooling.

If you notice you only get dizzy/vertigo in episodes when laying down that may be benign paroxsymal postural vertigo (BPPV).

These can occur in lots of conditions, including ME/POTS. Also note if you go dizzy during 'thinking' (PWME report this) and or extensive brain input using a PC/Video games console, you may have symptoms of a partial seizure. If this happens, immediately stop playing the video game and go sit away from the screen quietly and see if this helps.

Number 5
Checking for possibility of active infection, other than EBV! I found my severe vertigo that hospitalised me to be caused by Parvovirus B19.

Number 6
Measure your IgE levels (unspecific allergy marker).

Number 7
Check you eat enough salt (24hr urine sodium test)
This is particularly important for POTS patients who can have
a low blood volume (also found in CFS - see Dr David Bell's research).

Number 8
Rule out anaemia. Measure B12/Folate/Ferritin. When you're chronically ill, and infected and run down you can get anaemia, even if you're not a vegetarian and eat meat or eat 'well'. (You don't have to be skinny to be anaemic, you can be obese).

Number 9
Make sure you aren't ODing on supplements, so check with blood tests
Check you aren't deficient in vitamins and minerals/nutrients linked to development of dizziness (blood tests)
Make sure you aren't taking supplements with additives or 'patented formulas' you may be intolerant of!

Number 10:
If also Short of breath when dizzy: Check your oxygen saturation levels with a high quality home Spo2 monitor but ideally in the doctor's office first, if possible.If dizziness is persistent and unexplained, Ask for an ECG, 24Hr ECG and Electrocardiogram (both non invasive) heart tests, as dizziness can be linked to circulation and heart problems in some cases.

Number 11:
Check your blood sugar with a diabetic home test machine, especially if you're waking up dizzy and hungry/nauseas or you get this between meals.

 

[Clerner]

Hello.

I've got POTS and ME, so yes I'd advise a TILT test if you have postural tachycardia and other cardinal symptoms. Due to POTS I'm always dizzy and due to ME I always get infections and thus chronically get viral vertigo which is horrible!

Dr Edwards on this thread sensibly recommended some tests and I'd go with these for sure (If you can manage them), however if you can't get out the house, then you can't have the tests. So in the mean time, I was thinking what's helped me, and one of the ideas may be of some use. NB: There are many other reasons, to consider, these are just some I've found useful as a PWME/POTS, which is a very complex problem to manage from day to day.

Number 1
Check your medication isn't causing the vertigo symptom (E.g. key culprits are beta blockers/Lyrica and other epilepsy/pain control meds). If agreed by a doctor, you can sometimes be allowed to stop meds slowly, and then try another variant. If necessary and able (costly) you can try this in hospital if it's a very important medication. Many hospital admissions (A&E/ER) are due to drug reactions, they don't have to be life threatening, but they can be life affecting.

Number 2
Check you drink enough water (many PWME forget to drink or are too weak to drink at least 2L of clear fluids a day). You can also measure the ability of your body to retain water by measuring ADH (Anti diuretic hormone) and Aldosterone which can be affected in ME/POTS. This is important to mention, as you can literally pee out the water before you absorb it properly. Sometimes PWME CFS develop Diabetes Insipidus. So look for lots of clear urine. Excessive urine output ( ++ thirst) can also be a sign of undiagnosed diabetes.

Number 3
Check your blood pressure during dizziness event. Note if you're stressed, your BP will usually be elevated. It's if it's low you want to note, also if it's low despite being anxious or stressed. Note that even with normal BP, PWME/POTS can feel faint. This may be due to reduced blood flow to the brain. (BP cuff is on your arm obviously and unable to measure brain blood flow).

Number 4
Note what you were doing during attack. For example if the vertigo comes off during/after peeing, it can be a neurological condition called Micturition syncope. I have this can it can cause sudden onset balance loss, even in bed.
When in bed, I pee in bottles and not long after the room is spinning around. Not nice, and it ruins your sleep too. Also in autonomic dysfunction (which I have) I get this randomly when I eat. So you're 'OK', eat the first meal of the day and get really nasty vertigo, simply eating a sandwich. The only thing to try and do, is to eat smaller portions, so you get less blood pooling.

If you notice you only get dizzy/vertigo in episodes when laying down that may be benign paroxsymal postural vertigo (BPPV).

These can occur in lots of conditions, including ME/POTS. Also note if you go dizzy during 'thinking' (PWME report this) and or extensive brain input using a PC/Video games console, you may have symptoms of a partial seizure. If this happens, immediately stop playing the video game and go sit away from the screen quietly and see if this helps.

Number 5
Checking for possibility of active infection, other than EBV! I found my severe vertigo that hospitalised me to be caused by Parvovirus B19.

Number 6
Measure your IgE levels (unspecific allergy marker).

Number 7
Check you eat enough salt (24hr urine sodium test)
This is particularly important for POTS patients who can have
a low blood volume (also found in CFS - see Dr David Bell's research).

Number 8
Rule out anaemia. Measure B12/Folate/Ferritin. When you're chronically ill, and infected and run down you can get anaemia, even if you're not a vegetarian and eat meat or eat 'well'. (You don't have to be skinny to be anaemic, you can be obese).

Number 9
Make sure you aren't ODing on supplements, so check with blood tests
Check you aren't deficient in vitamins and minerals/nutrients linked to development of dizziness (blood tests)
Make sure you aren't taking supplements with additives or 'patented formulas' you may be intolerant of!

Number 10:
If also Short of breath when dizzy: Check your oxygen saturation levels with a high quality home Spo2 monitor but ideally in the doctor's office first, if possible.If dizziness is persistent and unexplained, Ask for an ECG, 24Hr ECG and Electrocardiogram (both non invasive) heart tests, as dizziness can be linked to circulation and heart problems in some cases.

Number 11:
Check your blood sugar with a diabetic home test machine, especially if you're waking up dizzy and hungry/nauseas or you get this between meals.

 

[Clerner]

@Research 1st Thanks for all that good information! Don't take any Rx meds, just opened my eyes one morning and moved my head in bed is how it started. I am being tested for parvo 19 and hhv6 tomorrow! Plus, I think anemia testing would be good- lots of blood loss from hemorrhoid. I might try the "poor man's tilt test as was described on one of these posts. Thanks again!

 

[Mij]

@Research 1st re:#5 were you treated for this? did it help?

 

[rellima]

Clerner
Your description of the vertigo sounds like the BPPV episodes I had. Started when I woke up one morning and turned my head and the room started going around. First episode went on for three weeks then a month later a second episode! For me, turns out the recurrent BPPV episodes were caused by Meinere's Disease (diagnosed by ENT-- solution reduce inner ear fluid by eating less than 2000 mg of sodium per day which is extremely difficult but works). And the Meinere's appears to be a result of fungal sinusitus (candida in the sinuses and ears that can come from exposure to mold or gastric reflux with candida in gut) and possibly tied to methylation blockages due to gut dysbiosis and candida overgrowth. My point being that there are many underlying issues that may predispose one to vertigo and you will want to find out what your cause(s) is/are. Note: As others have commented, BPPV can be resolved via the Epley maneuver. The good news is that you can self administer the Epley at home by yourself, not fun, but effective. You also must first determine which ear is affected (see website that follows). Be sure to do the maneuver on the floor on on a bed where you can hold on, so that you don't fall off when you execute the maneuver which will set off the vertigo for about 30 seconds in each position. Link to Epley and other BPPV maneuvers: http://www.webmd.com/brain/home-remedies-vertigo Link to explain Meniere's: http://www.mayoclinic.org/diseases-conditions/menieres-disease/basics/definition/con-20028251 For me, I had to stop the sodium to reduce the inner ear fluid and do two series of Epley's a few days to a week apart to move all the crystals back in place. So far, since I have implemented the low salt diet a year and a half ago-- no vertigo! Forgot to mention antihistimines can help short term to relieve fluid in ear. A low histamine diet can help also-- histamine may be a real issue if you have gut dysbiosis since DAO which breaks down histamine in food is frequently compromised with gut problems.

 

[Clerner]

ad to stop the sodium to reduce the inner ear fluid and do two series of Epley's a few days to a week apart to move all the crystals back in place. So far, since I have implemented the low salt diet a year and a half ago-- no vertigo! Forgot to

Thanks for the good info. It does seem to be only on right side. I probably do consume alot of sodium also. I don't have any sinus trouble, but have had gut yeast problems. I will try the exercise and see if they work. It will be scary because the spinning is awful. Thanks again.

 

[Clerner]

For me, turns out the recurrent BPPV episodes were caused by Meinere's Disease (diagnosed by ENT-- solution reduce inner ear fluid by eating less than 2000 mg of sodium per day which is extremely difficult but works). And

Interestingly, it said a contributing factor to MD is viral infection.

 

[rellima]

Interestingly, it said a contributing factor to MD is viral infection.

My ENT told me that no one knows the cause of Meneire's, although there are many theories as to the cause. Many believe that Meniere's occurs as a result of previous trauma viral or otherwise to the ear. But, Meneire's can "spontaneously" go away or even recur after a time (factors behind this are unknown). However, since I have been treating my fungal sinusitis (the fungus/candida provides a biofilm for the normal bacterial flora of the nose to develop into repeated sinus infections and fluid buildup as the body reacts to the infection and overgrowth), my affected ear (my left one) has opened up considerably. I no longer have the tight feeling in that ear and my jaw that my GP said was TMJ and my Eustachian tube has opened on that ear. So, I believe treating the candida/fungus (which involves antifungals and candida diet--i.e., no sugars or starchy foods to feed the candida) has removed the allergen (candida) and thus the histamine fluid reaction in that ear and my fungal sinusitis ENT concurs. I also wonder if this has removed the Meniere's as well. But, I'll test that after I heal my gut and restore methylation.

 

[rellima]

Thanks for the good info. It does seem to be only on right side. I probably do consume alot of sodium also. I don't have any sinus trouble, but have had gut yeast problems. I will try the exercise and see if they work. It will be scary because the spinning is awful. Thanks again.

I agree the spinning is awful and I get nystagmus (uncontrollable side to side eye movement). But, the good news is that with the BPPV when I move to each Epley position, I have never had the vertigo last longer than 30 seconds (which seems like a long time when it is occurring) in each position as long as I don't move my head once it begins. That is why I like to hold on to the bed post since that is a distractor and insures I don't roll of the bed during the vertigo. I also hold out my hand with my index finger extended and try to focus on the index finger while I count to 30 as a distractor. I find that as I move into each position once the vertigo starts it gets "faster" at the beginning and then begins to slow toward the end of the 30 second period as the crystals settle into place. It is also nice if the first time or so you can have someone with you to supply the finger to focus on and encourage you by firmly reminding you to focus on their finger and to hold on by reminding you that the vertigo is going to stop. Also, I would mention that if you are having trouble sleeping, (this was a big issue for me), once you figure out which side is the affected one, you can usually sleep on the Unaffected side (unaffected ear down on the pillow) and use pillows behind you to keep you from rolling over while you sleep. Alternatively, others have sewed a tennis ball in the back of their night shirt to keep from rolling or sleep in a recliner with a cervical pillow to keep your head from turning (this is what I had to do for the first few days until the crystals started settling down and I could predict exactly what head position would bring on the vertigo).

 

[Clerner]

@rellimafish. Unfortunately the vertigo came on after 4 weeks on diflucan and 2 wks of antibiotics( for low grade fever) I almost thought it was the diflucan, but did not have vertigo each time I took it for the first 3 weeks so I ruled that out. Also, have not had any sinus issues for many years.

I am going to try this maneuver today even though I am really scared. I am also going to lower my sodium intake. I also get nystagmus. I am sleeping on the better side.
Thanks again for the great information!

 

[rellima]

@Clerner Hope the maneuver went well and the lower sodium helped. Regarding yeast, I've learned that antibiotics can kill the good bacteria and allow yeast (which is opportunistic) to overgrow. Also, Diflucan only suppresses the yeast and symptoms come right back as soon as the Diflucan is stopped. Oral Nystatin will kill the yeast in the gut; but the yeast can "hide" via biofilms and can mutate until it is resistant to Nystatin. So, apparently, the type of yeast killer has to be rotated to be effective in conjunction with a no sugar, low carb diet. I'm still trying to understand how all this works. But, I have learned that eradicating yeast in the gut is a long battle. I know that yeast in the sinuses requires antifungals directly into the sinuses to kill it (such as Amphotercin B via a diffuser or a spray). But if you have not had any sinus issues for years, chances are good that yeast is not in your sinuses, since I had sinus infections all the time due to the yeast/candida biofilm that served as a medium.

 

[Clerner]

@rellimafish. Thanks. I have heard alot about the biofilm. I am trying wild oregano complex and monolaurin to keep the yeast at bay, but still have difficulties. Wonder if I should try nystatin. I guess it is Rx only...I mainly stick to low carb, but I still like sweets so it's hard.

 

[2Cor.12:9]

Woke up Oct 17 and put head to side/back and had severe spinning(vertigo). This has continued everyday since. Dizzy when standing, but spinning with head movement (mainly back and to the right) when lying in bed. Made me nauseous at first but have no gotten use to it! Is this POTS or just part of high ebv titers and active ebv? Worth getting tilt table test? Thanks for any advice.

@Clerner - just checking to see if your vertigo has improved yet
@maryb - I'm having a bout again again too. I've had several bad bouts over the years (Have had ME/CFS and Hashimoto's for 30 yrs.) Vertigo is the WORST thing - and mine always triggers a royal panic attack at the same time. I have spent several weeks sleeping propped up on pillows before.

Since vertigo can have so many causes it's always important to see your doctor. I saw an ENT at first and was tested for BPPV, which was negative even though mine is usually, but not always, triggered by position. I had a brain MRI to check for tumors - negative. I saw a neurologist to see if it might be MS or something else. The only thing anyone came up with was labrynthitis.

Since then I've read numerous articles stating that it's not uncommon for people with CFS/ME to have bouts of vertigo because of inflammation. I remember reading Laura Hillenbrand's story (author of Seabiscuit and Unbroken) about how long lasting her vertigo was.

It's also common to have vertigo with Hashimoto's autoimmune thyroiditis, which a lot of people with ME/CFS also have. Here's a quote from Dr. Kent Holtorf mentioning that.


"Symptoms Of An Underactive Thyroid
Hypothyroidism symptoms are very similar to the ones experienced by CFS sufferers. Lethargy, sensitivity to cold, heat intolerance, mood swings and depression, poor memory and concentration, joint pains and morning stiffness, headaches, vertigo and deafness, pre-menstrual tension, voice changes, loss of libido and susceptibility to viral infections are all found with both conditions." https://www.holtorfmed.com/cfs-patients-and-low-thyroid/

Whenever I have attacks I can feel a slight pressure, but no pain, in my inner ear, which I believe is due to the inflammatory process - whether caused by the viruses I have related to ME/CFS or by the autoimmune inflammation associated with Hashimoto's. It seems to help when I take anti-inflammatories like Alieve and Curcumin (Turmeric).

Also my neurologist told me that vertigo can "feed on itself" - I was so freaked out by it that I would baby myself too much. He said to push into it more even though it's uncomfortable. There are a number of good YouTube videos on vertigo exercises that will help.

Oh, and one more thing that helps me a lot. I take a low dose of Xanax regularly and my doctor said to double up temporarily when I have attacks. This does help (as long as I don't barf it up first! ha!)

Hope you are feeling better.

 

[Forbin]

MYALGIC ENCEPHALOMYELITIS : A Baffling Syndrome With a Tragic Aftermath. By A. Melvin Ramsay M.D., Hon Consultant Physician, Infectious Diseases Dept, Royal Free Hospital. [Published 1986]

Although the onset of the disease may be sudden and without apparent cause, as in those whose first intimation of illness is an alarming attack of acute vertigo, there is practically always a history of recent virus infection associated with upper respiratory tract symptoms though occasionally there is gastro-intestinal upset with nausea and vomiting. Instead of making a normal recovery, the patient is dogged by persistent profound fatigue accompanied by a medley of symptoms such as headache, attacks of giddiness, neck pain, muscle weakness, parasthesiae, frequency of micturition or retention, blurred vision and/or diplopia and a general sense of 'feeling awful.'
http://www.hfme.org/wramsay.htm

Onset with vertigo seems to be pretty common. There was an entire M.E. outbreak in Jutland, Denmark in 1953 described as "Epidemic Encephalitis with Vertigo."

My experience with this disease began with an acute attack of vertigo that initially left only a mild unsteadiness in its wake. That unsteadiness grew progressively worse to the point where walls and corridors seemed to "bend" and "curve." This had nothing to due with OI, so far as I could tell. I felt like I was constantly in motion - pitching forward and back - while standing, sitting or lying on a bed.

I was extensively evaluated at one of the top otological / balance centers in the world and was told that I had a measured 30% impairment in my balance system. They said that my symptoms suggested it was much worse than measured. They were at a loss to explain it, but thought that it might have to do with insufficient micro-circulation in the inner ear. They suggested that I try taking niacin to dilate the capillaries of the inner ear, but it didn't help.

This kind of vertigo was similar, if not identical, to the type I had previously experienced as a child during very intense episodes of the "flu," or some other infection. The hallway to the bathroom always seemed "tilted." I don't imagine that all people are affected by the flu in that manner, but I don't think it is particularly unique either.

To make a long story short, the dizziness continued for a long time. About 3.5 years after onset, it began to SLOWLY reverse. Some other symptoms also peaked around that time and then SLOWLY began to improve. I wonder now if that transition might have had something to do with the eventual fall in elevated cytokine levels that Columbia University reported at around the 3 year mark.

At any rate, an acute attack of vertigo is really awful for anyone. This kind of thing is worse.

 

[Clerner]

Since then I've read numerous articles stating that it's not uncommon for people with CFS/ME to have bouts of vertigo because of inflammation. I remember reading Laura Hillenbrand's story (author of Seabiscuit and Unbroken) about how long lasting her vertigo was.

Guess what! After about 3 weeks on valtrex all my vertigo and dizziness went away! I never even did those exercise movements to help as I was too scared. I was shocked and in disbelief! Plus, my weird eye focus problems and fuzzy headed feelings just disappeared!!!

Perhaps virus kept something in inflamed in my ear?

 

[Clerner]

This kind of vertigo was similar, if not identical, to the type I had previously experienced as a child during very intense episodes of the "flu," or some other infection.

Yes, my vertigo was identical with what I felt when I was first tested and told I had ebv over a year ago. It eventually went away after my diagnosis, but came back almost 1 year later with a vengeance! Perhaps another reactivation of ebv? All I know is valtrex made it disppear!

 

[Clerner]

@2Cor.12:9 I also found out i had high titers of parvo virus and slightly high hhv6. Perhaps it is the parvo that causes inflammation for all I know. Have you been tested for any viruses?

 

[2Cor.12:9]

@2Cor.12:9 I also found out i had high titers of parvo virus and slightly high hhv6. Perhaps it is the parvo that causes inflammation for all I know. Have you been tested for any viruses?

@Clerner - so happy to hear the AV took it away! Yes, I have tested positive for HHV6, EBV, and Herpes Simplex. I really do believe that these vertigo episodes for me are related to inflammation caused by one of these or else by the inflammation that comes from autoimmune Hashimoto's - or maybe the combination. I can "feel" the inflammation deep inside my right ear canal, but I don't believe it's a bacterial infection.

I have never been given an antiviral but after all these years I think it's past time to try one. With no insurance though, the cost is out of reach right now. Maybe next year when I'm on Medicare.

 

[Clerner]

no insurance though, the cost is out of reach right now. Maybe next year when I'm on Medicare.

Yes, it is quite expensive. You can by av's on line for 135$/mo. thru all day chemist and you can get it at costco for 145$/30 day supply even without insurance ( mine was 75$ with insurance ). You dont need to be a member of Costco to use pharmacy. Obviously you will need a dr to look at your health history and give you a Rx.
In my case it is so worth it because I have seen improvement in 1 month and still have 4 more months. It may be worth a try! Good luck!