Hey guys…I agree tingling and twitching can defo be due to migraine…god some people are paralysed with migraine attacks! Dr S said it was the consistent nature of my symptoms such as a permanent hand tremor and migrating twitches i.e one day on my legs, another on my arm etc that are not typical of the migraine mechanism.
Both Lyme and migraine can have a HUGE variety of symptoms attributed to them…so many neuro symptoms are common to lots of syndromes…pins and needles can be due to MS, stroke, migraine, lyme, brain tumour etc…I agree with Sarah that most specialists are only interested in their specifric area of expertise but it’d be very foolish to become so narrow minded as to never believe there could be something alternative at work…which is why I’m really grateful that Dr S had the sense to listen to my Lyme results and readily accept them.
I think this applies to the medical community’s attitude to Lyme…it’s changing as research emerges but many medics have an old fashioned view of a disease that is becoming increasingly recognised as a complex and prevalent problem. Migraine is, in my opinion, a ‘go to’ diagnosis when a person presents with neuro symptoms but a normal neuro exam and no lesions on an MRI etc…a friend of mine in the UK had sudden onset numbness down one side of her body and had a functional MRI which showed seizure activity…no family history of migraine and was diagnosed with migraine but the neurologist said if amytriptyline doesn’t imrpove things we’ll consider possible epileptic seizures…that’s not to say that migraine is not the right diagnosis in many, many cases but it’s commonality alone is not enough to rule out the possibility of other things at work…
It all seems so complicated!
I’m glad your getting some answers Lizzie keep us all posted on your progress would be Amazing if this treatment got you well. This may have triggered all this off I think for most of us an event triggered this hormones,illness etc
Good luck with it I will be following your story! X
What makes you so sure that tingling and twitching are due to a migraine? and, yes, I have noted that many on this forum have various neurological symptoms in addition to dizziness and headaches.
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Hmmm … sometimes I feel like we’re reinventing the wheel! :?
Lisa – have you researched migraine to the extent you have researched Lyme disease? Migraine – in particular migraine with aura – can produce the following:
– Fully reversible visual, sensory, or speech aura without motor weakness
– dysarthria (speech problems), vertigo, tinnitus, decreased hearing, double vision, ataxia (lack of muscle coordination), decreased level of consciousness, simultaneous bilateral visual symptoms in both the
temporal and nasal field of both eyes, and simultaneous bilateral paraesthesias (i.e. numbness)
I have. i have researched migraines, particularly migraine variants since 2007, and have yet to find adequate research on chronic, 24/7, disability every single second of every day for almost 6 years from a migraine.
and, I have read so very much about refractory migraines, and I cannot relate in the slightest in terms of my own progressive, chronic, debilitating, neurological symptoms.
Hi Robert,
I don’t think this is a debate about lyme but desperate people trying to find answers. So many of us here have been unsuccessful with our MAV treatment, suffer 24/7 and need to look further. I am not saying lyme is the reason those of us don’t get better but it is certainly welcome knowledge and our forum memebers can keep us posted with their progress and give us potential alternatives. Even though my doctor disagrees with lyme, I am eagerly awaiting results from our member to present to him in the future. Thanks for all the knowledge to those that know more about lyme than myself.
I wonder if on this site we could have section called “Other potential diagnoses besides or in addition to mav” or something like that. I know we have the section just for other conditions, but if there could be a place for people to talk about potential other problems causing their dizziness- not just instead of mav but also in addition to mav??? we could move all the lyme threads to that section?
I know it’s a migraine forum so I get the point of constantly bringing up Lyme etc…sorry for my part in bringing it up again…just trying to give an honest update about my story…happy to post somewhere else if people prefer. I agree with Lisa tho…I learnt about another member here, AmyDiane who improved on antibiotics and was v dizzy…she has since e-mailed me personally etc so it was good to be able to see that thread…and meet others with dizziness and Lyme like Lisa too!! x
Thanks Rob, yeah I know what u mean…people need to decide if they feel their symptoms are not improving on migraine interventions, they have other symptoms that suggest something other than migraine, have risk of tick exposure etc and then make a personal choice about whether the Igenex test is worthwhile…or request the western blot through their G.P…it can be done at Porton Down, the government reference lab for free on the NHS…but advice of Dr O is that if this were done it would be necessary to ask them to report the specific bands…xx
I don’t think it’s a can of worms nor do I think we have to tip toe around the Lyme issue and not talk about it. If people want to read about it they will and if they want to talk about it they will. We’re all sensible, mature adults (most of the time ).
IMO if people are worried about Lyme then they should just go ahead and get tested. That $270, even if you have to pay it out of your own pocket, is not that much money in the scheme of most of our lives with all the tests and meds we’ve had, especially if it’s going to give you piece of mind.
One message that I do think is very important is that it’s not a case of Lyme OR VM, at least not for the majority of people on this forum. If someone is getting lots of migraines, including complex and varied, non headache symptoms, even if they’ve never had them before and even if they end up with a clear cut diagnosis of Lyme, then they ARE a migraineur. It just means Lyme was the likely trigger or big bang in their case. I just don’t see the utility in trying to deny being a migraineur. The happy news is that if you can treat the trigger (eg Lyme) you’ll most likely rapidly decrease your migraines, perhaps to the point of never having a migraine again. But the gene - it’s still there.
I wonder if on this site we could have section called “Other potential diagnoses besides or in addition to mav” or something like that.
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Not sure why this isn’t sufficiently covered by posting in the “Other Illnesses & Conditions” forum. I think it would be good if the Lyme talk occurred there instead of the GD forum where possible.
But I’m going for the full most comprehensive Lyme test and the full most comprehensive co-infection test. Simply because I have the health insurance to cover it. and because sandfly are a known carrier of Bartonella which is a co-infection.
God- yesterday my legs ached so much and I was in agony. I also have been noticing strange small bruising come up on my thighs randomly lately. Today the leg ache has gone. But I struggle to see how this can be migraine related. I know migraine can cause a lot of things, as Scott says, some of which we would not at first think to relate to the illness- but I just struggle to comprehend that I only have migraine going on at times. Migraine can live comordily with other things, maybe I’ve got migraine and fibromyalgia, I don’t know. But I’ve got the capacity to do this testing so I’m doing it.
I just need Dr S or a GP to write a letter so I can claim it back. Fingers crossed.
Eek good luck mm. The GP should agree given that ur notes will document the years of issues! Weirdly a friend of a friend rang me this morning as her Boyf has been diagnosed with Lyme disease through blood tests in Switzerland after a tick bite. He has 24/7 dizziness. I agree it could easily be migraine and Lyme acting together in my case…but if the Lyme is at the very least a trigger I want to eliminate it! Xx
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