ME/CFS and vertigo conditions-anyone here with both?

Hello everybody,

You may be surprised that I’m writing rather than my son who suffers from these awful conditions, but using a computer is currently impossible for him. I am sorry I didn’t find this excellent forum before, but I’m writing to see if I can find any suggestions or hints to help him. He has constant, continuous sensations of seeing the surroundings move and feeling himself spinning inwardly. Does anyone here experience constant low-grade vertigo in this manner, all the time?
So, I shall try to be brief.

It began shortly after he was diagnosed with ME/CFS in 1993 while at university. In 1997, unable to sit up or talk, he spent 10 weeks in the National Hospital of Neurology. London. The dizziness emerged after he was prescribed venlafaxine, but disappeared on stopping the medicine. Reappearing few months later for no reason, various weird movement symptoms have been constant ever since. By 2003, he was making a 50% recovery from ME when he went down with glandular fever and immediately developed a strange headache which affected the movement symptoms enormously, and he became much more ill with ME. Over time he learned to ignore them especially as he is a musician, playing jazz guitar but in the last three months they have become so severe, he can’t function at all.

Incidentally, for those who haven’t come across ME, it’s now recognised as a complex neurological illness affecting many systems of the body, similarly to Long Covid. It is not simply fatigue!

Like so many of you, he’s had innumerable consultations originally with psychiatrists for ME –dreadful– then with neurologists, another stay at Queen Square for the vertigo symptoms, unfortunately, no help. Lately, a neuro-otologist, then last year, on developing tingling in his arms et cetera and severe attacks of spinning lasting 30 minutes or more, he was diagnosed with vestibular migraine and PPPD. For six months, Flunarizine controlled these attacks but not the feeling that he was spinning or that the room, objects, the chair he’s sitting on is moving backwards and forwards.

(On the way, he found the work of Joey Reminyi, the Australian vestibular audiologist, whose books and online material might help to some of you but the limitations of ME stopped him benefiting by her theory that neuroplasticity can affect change in tinnitus and balance disorders. I’ve absolutely no financial interest in this!)

So to the point of my post: venlafaxine caused the symptoms, though I see some people have them initially, but they were prescribed for ME/CFS, and have benefited people with vertigo. Last year the neurologist prescribed gabapentin and again in January, this year- unfortunately, it knocks him out completely, perhaps because of the ME/CFS. He’s taken amitriptyline for years…

Do you know of any other medicine that might help?

I must add that having continuous vertigo is not a known symptom of ME/CFS but I would like to be in contact with anyone who has both these conditions, which incidentally most GPs are unable to treat. I look forward to hearing from you.

I have not been officially diagnosed but believe I have some variation of ME along with VM. I am house bound and developing worsening ME caused the medication that did control my VM to stop working.

This is Dr. Tim Hain’s treatment progression for vestibular migraine. He normally starts with either venlafaxine or a tricyclic as the main-line medications and then branches out to other drug classes as needed. Seems like he has had a run of antidepressant use that hasn’t helped, so it might be worth discussing branching out into other migraine prophylaxis drugs?

if the gabapentin helped but made him too sleepy, he might be a good candidate for Lamictal, which is another anti-epileptic that has a pretty decent side effect profile from a neurological standpoint, but doctors dont like to prescribe it often due to a rare rash that can occur sometimes. Talk to your doctors! In any case, he is far from having tried everything – still plenty of effective medications to add to see if they make a dent. Many patients also need a combination of meds, so something else to keep in mind.

Good luck

Thanks so much for your reply. I’'l look at the other medications right away! All best wishes and good health to you ,too!

I just wondered if you had ever heard of Low Dose Naltrexone for ME. Naltrexone itself is an opioid inhibitor, often given to drug addicts and alcoholics to help them beat addiction. However in much much lower doses it can help with increasing endorphins and regulating the immune system, useful for those with autoimmune conditions. Its often used by those with MS, ME. I’m not claiming it will necessarily help with vestibular migraines but it might help with the ME.

I take it for Fibro, which has similarities with ME. Its not readily available on the NHS, so often people pay for a private prescription but its not terribly expensive. You normally start low, I started on 0.5ml and am working upto 4.5ml daily. There is a very good website with links to research and UK prescribers called if you want much more information.

Thank you DIzzyandConfused for your reply,
Unfortunately, he has tried LDN but it gave him a different kind of headache. Bought from a Scottish pharmacy and started at a low dose. How does it help you?

Hello adrir,
ME is also a horrible illness. Have you seen the forums Health Rising and Phoenix Rising? Loads of research and help, and people to consult if you’re looking for a medical diagnosis.

I regard CFS/ME as usually a complex otological illness, not a primary neurological or psychiatric one. The multidisciplinary functions and disorders of the vestibular system in the inner ear are still not fully understood, and hence diagnosed. Consider that perilymph fistula, superior semicircular canal dehiscence, PPPD, vestibular migraine, etc, have only been recognised for a few decades. I know of no origin of spinning other than the inner ear; when central causes for this are alleged, it will be found that a concomitant ear disorder has not been considered or eliminated.


I’ve found its helped with pain and energy levels. Also mood and generally feeling more positive.

Thank you. That’s excellent and I wonder if he might try it again.

You’d love our #research-theories-controversies category. There’s loads of interesting and surprising stuff in there. Access is restricted to Trust Level 2 gained from positive engagement in the forum.

Sorry to read about your son. I was told that with pppd and vestibular disorders there are no medications to treat it. If it’s a balance disorder than the brain and vestibular system need to re balance. I have fibro vestibular migraines and pppd. The meds l need for the pain have side effects, the meds for the migraines the same. You solve one issue and get another. You get told different things by each speciality and it’s beyond frustrating. I really feel for your son having such problems at a young age and you as his mom. Even writing this gives me waves of nausea as l too can’t use computers much.