Saw Dr S today! He basically didn’t poo poo the Lyme diagnosis at all…I was expecting he would!! He said the Lyme infective process may well have triggered the neurological symptoms I present with and now it is a tangled ball of string and it’s impossible to say which symptoms are Lyme and which are migraine triggered by Lyme. He said they are absolutely inter-linked. He also said that the constant pins and needles and muscle twitching are not typical of migraine…he wants me to continue with the antibiotics but also treat the migraine symptoms with gabapentin…he also said again to avoid neck massage or manipulation as it can trigger exacerbations of dizziness…showed me a schematic of the blood vessels supplying the brain stem. Xx
That’s interesting Lizzie. Glad Dr S is supportive of the Lyme diagnosis and now you can tackle both Lyme and MAV and hopefully get control of it all! Thanks for letting us know xx
sounds like he knows his stuff and is rational about it. the only thing about treating both at once is that you won’t know which thing is helping- so u dont know how long to stay on the antibiotics or whether gabapentin is doing anything??? i am in a similar spot right now i am on antibiotics for potential lyme, and when i am done, i will start a new mav med (atenolol).
I think treating both is a great idea. The antibiotics might get rid of lyme but you might not know as the migraine might still be there. The lyme could have caused the migraine so you might need to treat both. We could be here all day talking about Lyme again. You are in safe hands I would do what they say try not to over think it. You will only dig yourself a hole
Hey guys, thank u! Yeah I’m wary to treat both but dr s said they may both be at work here…Lyme may have triggered mav or it may be Lyme alone…going to carry on with the antibiotics for a while first then add the gabapentin…maybe after 3 months of antibiotics. Xx
Saw Dr S today! He basically didn’t poo poo the Lyme diagnosis at all…I was expecting he would!! He said the Lyme infective process may well have triggered the neurological symptoms I present with and now it is a tangled ball of string and it’s impossible to say which symptoms are Lyme and which are migraine triggered by Lyme. He said they are absolutely inter-linked. He also said that the constant pins and needles and muscle twitching are not typical of migraine…he wants me to continue with the antibiotics but also treat the migraine symptoms with gabapentin…he also said again to avoid neck massage or manipulation as it can trigger exacerbations of dizziness…showed me a schematic of the blood vessels supplying the brain stem. Xx
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Now that’s the most logical thing I’ve seen written about Lyme and VM in a while. That’s exactly what I think is likely going on in a definite Lyme case in a migraineur – it’s a tangled ball of string (good analogy) with Lyme triggering the migraine but peppering the picture with its own symptom set – such as twitching perhaps (though I experience this). Personally, I think the dizziness is much more likely a migraine component and not Lyme.
I disagree with his recommendations about neck manipulation. If I took that advice I’d still be a train wreck. Since I had those trigger points treated and stiff joints mobilised again – and was shown how to keep trigger points at a low level (and know when to get help if they get out of control again), my life has literally changed for the better by orders of magnitude. It has stuck now since last December even with a few blips along the way.
Scott - totally respect your thoughts, but I do want to say that dizziness is not only a symptom that can be caused by Lyme, but I believe it is actually a common symptom of Lyme. of course, it isn’t always to the extreme that I experience it - there’s a large continuum. I look at multiple forums of people with Lyme per day and it is rare to find someone without some degree of headaches and/or dizziness. Dizziness and migraine are two very common symptoms of neurological Lyme
Hi Lizzie,
I think my MAV doc feels the same as Dr. S, except he didn’t think I should treat the lyme at all. Keep us posted. Thanks so much for sharing your experience!
Rockergrl
Hi Lisa – you need to separate out “migraine pain” from describing a headache that you are saying is caused by Lyme disease and not migraine. A migraine headache is caused by migraine. Unfortunately the term is used to describe ANY bad headache where it shouldn’t be. And so to avoid this confusion if someone has a migraine headache and Lyme disease, that person is a migraineur.
point well taken. you are correct. I think that I am so cautious with saying that because I saw Dr. Buchholz and he told me that head pain doesn’t have to be severe to be a migraine. he said a headache is a migraine. so, since then I have b een so cautious when using my words. however, lately, I think you know my thoughts about Dr. B and calling everything and anything a migraine. but, I won’t even go there.
Dr. Buchholz and he told me that head pain doesn’t have to be severe to be a migraine.
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This is absolutely correct. Most migraineurs suffer daily headaches that aren’t bad enough to stop them from going to work but enough to make life a real hassle. These headaches often masquerade as what old school GPs would have called Tension-type headaches (what I was told I had). While there are real TTHs, the vast majority are migrainous and usually come with light and/or sound sensitivity to some degree. Because migraine does not have to cause debilitating and severe headache, most don’t even realise they have it and just spend their lives suffering and using pain killers endlessly – this of course sets up rebound. This scenario is ripe for pushing that type of person to a chronic migrainous state.
Only about one-half of patients with migraine are correctly diagnosed. Of those diagnosed incorrectly, 42% are misdiagnosed as having sinus-type headache and 32% as having tension-type headache. Surveys show that 94% of patients who sought headache treatment in physicians’ offices had migraine. (Source: James U Aldeman from the Headache and Wellness Center in North Carolina)
Hey Lizzie , just wanted to say hi & fantastic that Dr S is on board with your correct Lyme diagnoses. Treating both seems very sensible to me indeed. You will get better my lovely xxx
update: the diagnosis was incorrectly thought to be Lyme. It’s migraine.
Thanks all. I agree with what Dr S said. He said pins and needles and muscle twitching can present as secondary anxiety symptoms with migraine but not in the way I have them. He said with a migraine variant disorder these symptoms are usually intermittent…I have buzzing/pins and needles 24/7…and tremor in my hand…he believes most of my background neurological symptoms may be the Lyme at work. The dizziness is a very common symptoms of Lyme according to the Lyme doc I saw here in the UK…who knows…I am just grateful to be on the antibiotics and taking it from there…
What I’d like to know is, if he didn’t think your tingling and twitching was typical of MAV, why he didn’t tell you to get tested for Lyme. You did that off your own back.
x
Tingling and twitches are not unknown to migraine. I had the tingling when VN hit and get twitches every so often though not daily that’s for sure. Lot’s of others here have reported this over the years. Neurological disease produces a lot of weird shit.
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.
Responding to what MM said- subspecialists typically only know (and only care) about their tiny area of expertise. Most wouldn’t know about or even care to suggest that something else is going on like lyme. Please tell me if I am quoting wrong but Lisa I think you said you saw someone at mass eye and ear and also were upset because they never mentioned lyme as a possibility…these drs. only are concerned with their super narrow areas- the rest is up to your primary care dr. to figure out…or else seek out treatment yourself. I am not saying this to be rude I am just explaining that that has been my experience. If you have complicated health issues and mav that is NOT clear cut and obvious, you need a good primary care dr. to help you sort it all out.
, just wanted to say hi & fantastic that Dr S is on board with your correct Lyme diagnoses. Treating both seems very sensible to me indeed. You will get better my lovely xxx