After having some great mail exchanges with Christine, I’m wondering if I have some CFS going on with this. I asked some time ago about how people reacted to physical activity and most of you seemed to be OK from it and are actively exercising now even though chronically dizzy. If I look over the past 6 years I can pinpoint dozens of times when heavy activity (sometimes just a short power walk) has brought me to my knees many times and it still does now – more than ever since dropping Paxil. At the moment I can’t do much at all in terms of exercise without suffering for 2-3 days afterwards, such as walking 2 km at a leisurely pace. Is it a migraine trigger? Or is it CFS as an added bonus? I’m not really sure but these episodes trigger some nasty headaches and dizziness for me plus a whole pile of symptoms that check CFS boxes such as impaired memory or concentration, post-exertional malaise, muscle pain (myalgia), disrupted sleep, depression and/or anxiety, IBS (irritable bowel, abdominal pain, nausea, diarrhea), brain fog, and visual disturbances (blurred vision, sensitivity to light, dry burning eyes). I realise that most of these symptoms can be attributed to migraine too but given the instant result I get from pushing myself physically certainly makes me think CFS could be present too. Very depressing thought but the facts seem to be there.
It also turns out that CFS, according to one doc, responds well to SSRIs by day and TCAs by night. the cross-over between CFS treatment and migraine is really similar.
Another thing I’m wondering is how many of you who reported having flu-like symptoms with migraine also have trouble with physical activity?
Christine – I’m always open to hear more about how you treat this and what you know about it all. You already mentioned some good things about the IBS that you have had good results with.
I too frequently vascillate and question whether I have MAV though it seems the most likely cuplrit. I have been told it’s probably CFS by a CFS expert but since there is not a digonostic test how can you know? Very frustrating. I saw you mentioned that you have sore eyes. When I saw Dr Hamalygi in Syndey and mentioned my dry sore eyes he asked if I’d been tested for Sjogrens Syndrome. Have you heard of it? I had the dry eye test and they were dry confirmed by schimers test and I have plugs in my eyes but they are always dry and sore. I also have a swollen salivary gland and a host of other symptoms that fit this diganosis as well including unrelenting fatigue. However when I saw a Rhemotologist and he ran the blood tests I didn’t have any of the markers so I thought I didn’t have it.
Since that time I have found out that about 40% of people are seronegative so I am going to hopefully see a immmunologist who doesn’t merely rely on blood tests as a diagnostic tool. I’d like to rule it out so I can be more confident that I am heading down the right path with MAV. If I was you I’d ask to have Sjogrens tested just in case. It has many of the symptoms of CFS. All the best.
I’ve thought the same thing. I’ve been SO busy lately - and the more I do, the worse I’ve been feeling. I had alot of trouble with VRT in that I’d then spend a day or two in bed, feeling fluish, head weighing in a just over 1 ton, etc.
With the myriad of testing and visits to hospitals and therapies with my patient, I’ve been very active. My body hurts…but especially in my back, shoulders and neck. Wonder if we’ll discover a connection.
I am yet to have a diagnosis (most likely MAV, however still in the process of having other ENT tests to rule anything else out, as I have a history of menieres in the family and other vestibular disorders). I am fatigued ALL the time. Sometimes I feel so tired, I fight with my head to get up. I lack the motivation to do much, because I know how tired it makes me feel. I do work long hours, but on my days off, I sleep ALL the time. For example, slept until 2pm today, very dizzy and still very fatigued. After work, I pretty much go straight to sleep, and when I wake up to get ready for work, all I can think about is the next time I’ll get to lye back down. Initally had tests for Chronic Glandular Fever which came back normal - then I had a severe vertigo attack, ataxia, ended up in hospital for four days. I didn’t know whether the fatigue was related to the dizziness & vertigo, but maybe it is??
Chronic fatigue and chronic flu like symptoms every bloody day since the onset of this ‘event’ at the end of December. Some days better than others. So, on the good days I will take a walk, do the laundry, do some yoga, cook, clean, etc for about 6 hours & Yippee!! I’m getting better!!!..Then the next day I can barely get up.
The other thing is, I have had bouts of this fatigue my entire life. Even as a 15 year old girl, I remember feeling this way. Some bouts last a day or so, some a week. I would just pass them off as the flu that I ‘fought off’. Ha! Little did I know.
I am currently in between medications as I tried Nori and Propanolol with very bad reactions. Wanted to try to wait it out, using valium as needed, because that worked with the last bad episode. Am still waiting for the doc on Topamax so I don’t know if that will help. We shall see.
My last doc didn’t believe in things like chronic fatigue so it was not addressed for the first 6 1/2 months of this episode. Thank goodness I could still think clearly enough to defend myself by getting another doc!
I read on Doctoryourself.com that large doses of vitamin C often help chronic fatigue. Have been thinking of trying it out myself.
Long answer but yeah, Scott, I get it too. Sucks. Hope you feel better!!!
It is really awful being tired all the time… It’s hard with work as well, when it’s so hard to get up in the mornings. One of my colleagues had great pleasure one day at a meeting asking that all staff please do not turn up five minutes late EVER. I usually don’t but some mornings it is just SO HARD. And not because I’m lazy, but because it just is really hard and I’m really exhausted all the time. People think because you look normal that nothings wrong, but they don’t get it.
Kathleen, I also had a terrible reaction to propranolol when I was put on it a year ago when my heart rate was really fast. Caused terrible vertigo and extreme ataxia to the point of collapsing and not being able to walk without serious assisstance. The propranolol really seemed to aggrevate my MAV/Vestibular symptoms.
I totally get what you are saying about work, and trying to get up, etc. I feel that way constantly, and it was particularly bad in the 2 years or so predating this latest event that started the end of December.
And, I have posted a ‘Note’ on my Facebook page about MAV entitled “I don’t LOOK sick, but…” Hopefully some of my friends have actually read it.
When I do get back to work I expect zero compassion, so I am just going to tell coworkers I have a neurological condition that I was born with & that this was a serious episode & that’s all.
I see I am a little late for this discussion, over a year in fact! But I have CFS. I was diagnosed in 2005, and having recently been diagnosed with MAV by Dr Surenthiran in Dec2013 I am currently on 150mg per day of pregabalin (lyrica). I have only just increased the dose fully so it’s only been 9 days but I’m hopeful that this is helping. I have no side effects to speak of, apart from a dry mouth and I feel a little woozy from it, especially in the beginning, but now I seem to tolerate it well.
The definition of CFS is a mild sore throat, aching limbs, a headache that doesn’t respond to painkillers, flu like symptoms, post exercise malaise, fatigue, a slightly raised body temperature, anxiety/depression. The onset is usually sudden and lasting at least 6 months. The diagnosis is similar to MAV in that it is a diagnosis of exclusion after a thorough health check up eliminating other possible causes.
I live quite well with my CFS, it is all about pacing oneself, good sleep hygiene, exercise and avoiding stress if possible. However it has been the vertigo that has really thwarted my life. I am hopeful finally to have found the answer in MAV and am very interested in the link between the meds. I would be really interested in your thoughts or further findings of anything that helped?
I was diagnosed with chronic active Epstein Barr CFS ME years ago, and retested positive for the reactivated virus about 6 mos before my big bang of dizziness. In fact, it was a mini big bang, post airplane travel, that prompted the CFS testing. It’s not a diagnosis of exclusion anymore; there are, I think, four tests for the virus, including one or two that test for reactivation. It can be called epstein barr virus, mononucleosis, glandular fever, and the reactivated, chronic form may be called chronic fatigue syndrome. Scott, why don’t you get the blood test?
No they are quite different! I have both. True vertigo isn’t experienced with CFS. The criteria is quite accurate but obviously not infallible. Some people aren’t diagnosed properly and have it. The headaches you get from CFS are I agree similar and hard to differentiate from, but there’s a low grade fever, mild sore throat, fatigue, low mood, fatigue, sleeplessness, hyper insomnia, muscle pain-particularly of the neck and shoulders, dizziness but not vertigo, low blood pressure. The list goes on and isn’t exhaustive. Some people don’t test positive for the epstine Barr virus but still have it and you could have had glandular fever many years prior to the blood test and still have CFS.
You need to have suffered these symptoms for at least 6 months
Maybe I should. But once you know the result what can be done?
— End quote
Nothing. Just rest lol. Would be interesting to know if you have that in the background.
CFS and Mav Mdds feel completely different, even though one would use the same term, dizzy, in both cases. No one runs to the doc thinking they’ve had a stroke with CFS – one drags oneself out after months of fatigue. After the initial bout with mono-Epstein-glandular, it’s just a slow deepening morass. Mav is anxiety provoking, whereas CFS is dulling.
I’m in a relapse right now and it’s been going on since late November when I was under a short and sharp amount of stress (big presentation at work). I’m seeing this much more clearly now. Seems like CFS is the bigger fish for me followed by VM. When CFS is good, migraine barely a problem unless I get hit with heavy visual vertigo.
All the time I’ve been “pushing through” these attacks and getting worse. Time to recognise what this is and rest up properly. Maybe I should revisit ami too as noted above.
‘’ It is important to recognise that when patients have the occasional “brilliantly crystal clear” complete headache-free day, the above non-headache presentations and manifestations of chronic migraine will typically fully disappear as well. As such, if the above non-headache symptoms have been attributed to other disorders such as fibromyalgia, chronic fatigue syndrome, postnatal depression, cervical spondylosis, meniere’s disease, panic disorder, etc, yet they fully disappear on headache-free days, this would suggest that the alternative diagnoses of these symptoms may well be incorrect and that they may actually be suffering chronic migraine disturbance to fully account for these manifestations.‘’
‘‘Many patients who present to headache clinics have been separately diagnosed as suffering from chronic fatigue syndrome. However, chronic migraine in its own right is recognised as a significant cause of fatigue and more than 80% of patients will have significant abnormal levels of fatigue on measurement of a Fatigue Severity Scale and 67% of patients will meet recognised criteria for diagnosis of chronic fatigue syndrome. However, the diagnosis of chronic fatigue syndrome or myalgic encephalomyelitis (ME) relies on the initial exclusion of any other known underlying cause and it is my opinion that ME or chronic fatigue syndrome should not be diagnosed without first excluding the presence of chronic migraine and/or sleep disorder.’’
Hope you feel better!!!