Migraines caused by ME - How to discuss with Neuro?

My ME is big on the neuroinflammation side, as evidenced by my chronic migraines. And it's EXTREMELY frustrating that I am fortunate enough to have a neurologist who invites me to appointments every 3-6 months to check on my migraines WHICH ARE CAUSED BY MY ME but I can't find a way to discuss ME with him.

In 5 years I've not even said, "Neuroinflammation"!

He's a nice man, but prone to telling me I need to distract myself from my health problems, not look into them, when I try to discuss things

But I can't do distractions for long, because they bring on a bloody migraine!

I've thought of simply asking, "I'm trying to understand why I get migraines when I read, or watch TV, or chat with people for too long? Could you perhaps explain why THINKING brings a migraine on?"

Maybe this would get HIM to say Neuroinflammation first!

Now I have to go and meditate to stave off a migraine from being on my phone. OMMM.

 

Make a journal of your migraines : date, time, duration and severity. Give him the paper without saying anything besides : here is a journal of my migraines, I thought you should see it.

He should respond well to facts, and they will speak for themselves.

 

I'd fire him. He might be a nice guy, but patients need good doctors

 

This

 

There is such a thing as activity induced migraine. It’s recognised as a trigger by neurologists. I wonder if you could approach this by saying activity seems to be the biggest trigger, and how frustrating and limiting that is. You don’t actually need to mention ME at all.

I’ve only recently noticed that my PEM seems to be cloaked in a migraine these days. I’m waiting to see a neurologist I’ve been under on and off before and since the ME diagnosis. I think if it as managing a symptom, rather than trying to get her to address the ME. Most doctors/ specialist s in the UK just don’t seem able to understand ME so it seems fruitless to make them try when you need something from them, if that makes sense. (I don’t mean we shouldn’t get doctors to understand ME, it’s just that you need to use your neurology appointment to the best advantage)

 

@Maria1 Thanks so much - I've not heard of this before! I'd love to understand what's going on - it feels like I get a cramp in my brain from using it, the way someone running might get a cramp in a muscle.

I've been mulling a theory to do with the way lactic acid is produced in muscles from anaerobic respiration when they can't get enough oxygen to make energy normally. Somehow my brain runs out of energy and can't make it properly. And gets poisoned with something similar. When I get a migraine, I feel poisoned. I LOOK poisoned. Green. The runs for a week, when the migraine is 3 days. Can hardly eat during that whole week.

Does this make sense to you, or anyone else?

I do exactly the same thing with any doctor I see. They've no idea about ME, and "Chronic Fatigue" is a wastebasket diagnosis. I have them treat the symptom in isolation where possible. But the migraines overlap with my hormone problems, my thyroid... I have questions!

 

@Dechi Thanks, that's great advice, and I've done it! Oh, damn. I should have written what I was doing at the time, and how long for. Next time.

I saw a great doctor 8 years ago, really open minded and caring. And then he stopped seeing patients to devote his time to research and teaching med students.

I've been so grateful to be under the care of a neurologist at all, compared to just GP back home in England, that I haven't thought about looking for someone else under the excellent public health system here, or seeing someone privately.

Thanks for the push! and @ivorin

 

Lactic acid generated from muscle use (or certain meds, and maybe a different form from digestion as well) can end up in the spinal cord and brain. I know that happens with MELAS, though I have no idea if the mechanism for it is specific to MELAS. Regardless of the source, my arms burn first, soon after the trigger, and my blood lactate tests high at that point. I get a similar "poisoned"/motion sickness feeling, and the headache typically hits hours later, or the next day.

 

@Valentijn Fascinating, thank you.

Do you have MELAS? I've pondered Mitochondrial Disease, but I'm the only person I know of in 3 generations of my family to be laid up ill like this with anything at all. But of course, I could just be a lucky rare collision of 2 recessive gene carriers.

Lactic acid from certain meds - I wonder if any of my prescriptions could be exacerbating this. I'll try to research all this before my next brain screen-saver interval.

 

The mito clinic says no, based on my MTDNA being normal. But mitochondrial dysfunction can be caused by other genes which contribute to mitochondrial functioning, and external or acquired factors. Based on symptoms, I'm about 99% sure that I have some form of mitochondrial dysfunction, but no idea what's causing it.

 

Hi Valentijn...how did you get your MTDNA tested? Did you also have a muscle biopsy? Thankyou- Rossy

 

A sample taken from urine was tested via Long Template PCR and Ion Torrent PGM. Urine isn't 100% sensitive for detecting heteroplasmic mutations, but it's pretty close, and much better than testing blood.

I do have a rare homoplasmic (normally inherited) mitochondrial mutation, A3796G, which is associated with adult-onset of a mitochondrial disease. But that one doesn't meet the research requirements for being declared pathogenic yet, plus it's slightly too common (0.54% in one database), and is a stable component of several rare MTDNA haplogroups.

I want to get a muscle biopsy, primarily to test for the same biochemical abnormalities which occur in mitochondrial disease caused by faulty MTDNA. The same problems would probably show up for other genetic, external, and/or acquired mitochondrial dysfunction. I'd like full MTDNA sequencing and DNA exon sequencing in the process, if a chuck of flesh is being taken out anyhow

The clinic in the public Dutch system which I went to about MELAS also operates privately for foreign patients, so I could probably have them do the additional analysis if we pay out of pocket.

 

Finally! I think I'm on the right track.

Decreased brain mitochondrial energy reserve. These mechanisms may induce biochemical shifts, leading, possibly via cortical spreading depression, to
migraine attacks by means of activation of the trigeminovascular system.

There may be defects in the anaerobic or proximal glycolytic pathways in migraine patients, evident in stressful situations.

ATP is decreased by 16%
and phosporylation potential by
39% in migraine patients between
attacks.

 

I am trying to rule out or in Mito disease currently. I had a muscle biopsy which my doctor just got the results of where he said they found abnormalities but that they 'were not indicative of Mitochondrial Disease' I think he said. I am trying to get my doctor to send me the report. As far as I know they were just looked at with no special tests done on the muscle.

I really don't know anything about the processes of how it can be tested and I feel like you that since I went through the surgery I want every test possible done on it to give me answers and my confidence in doctors like many of us is now close to 0%.

You mentioned tests you would like done. So would you be able to write what tests I should be asking to have done or alternatively I could ask my doctor to get the sample and send it to somewhere that does it. If I take what you have said above I should be trying to get 'full MTDNA sequencing and DNA exon sequencing of the biopsy'?

Thanks for sharing your knowledge on this...Rossy

 

This is the relevant bit from a very helpful booklet at http://www.amdf.org.au/wp-content/uploads/2014/05/Mito-Medical-Info-Booklet-201405-web.pdf . They have a lot of other good stuff on their site, especially in the resources section:

 

Thank you I will go through it for sure...