Poll The ME/CFS and FM Migraine Test: Do You Suffer From Migraines?

[Merida]

No, when I had migraines I was perfectly fine - super energetic. Can not find Tensenol anywhere - but have wondered if it would help now. The ( brilliant ) doc who prescribed died many years ago - before I got this thing.

Such great articles and discussion, thank you Cort.

 

[RuthAnn]

I had horrible migraines beginning at age 21- about 1971. My doc, a great diagnostic person, prescribed Tensenol, made by Foy Laboratories in Philadelphia. Stopped the migraine in 30 minutes. Was great. Can't find this drug anywhere.
@tatt
Amazingly the migraines just stopped about age 35. But since the injury in 1998 I have constant head pressure which can get migraine-like.

You have a good memory!

 

[lisaadele]

I thankfully do not have migraines although I did have them when I was pregnant .
I do get occular migraines occasionally - this is where there is visual disturbance (the aura) but not a subsequent headache. When this happens there is an increase in light sensitivity and a bit of nausea.

 

[Lissa]

I thankfully do not have migraines although I did have them when I was pregnant .
I do get occular migraines occasionally - this is where there is visual disturbance (the aura) but not a subsequent headache. When this happens there is an increase in light sensitivity and a bit of nausea.

Yes! I've had ocular migraines too. Really bizarre when it happens- thankfully rare. Only 2 or 3 in my whole life. Flashing zig-zaggy colors around the edges of my vision and greyed out centrally so I can only see things in my peripheral vision. No headache while it's happening. Scary though - makes you wonder if you are having a stroke!

 

[Remy]

Yes! I've had ocular migraines too. Really bizarre when it happens- thankfully rare. Only 2 or 3 in my whole life. Flashing zig-zaggy colors around the edges of my vision and greyed out centrally so I can only see things in my peripheral vision. No headache while it's happening. Scary though - makes you wonder if you are having a stroke!

Yes, me too! I went to the hospital the first time it happened and can you believe that they were unable to tell me I'd had an ocular migraine?? They did a CAT scan, the whole 9 yards and discharged me with "transient visual blindness". I was sure I'd had a stroke but then my mom told her friend who said, gee, that sounds like an ocular migraine. So I went to the eye doctor and he confirmed the symptoms. Scary!

 

[lisaadele]

Yes, me too! I went to the hospital the first time it happened and can you believe that they were unable to tell me I'd had an ocular migraine?? They did a CAT scan, the whole 9 yards and discharged me with "transient visual blindness". I was sure I'd had a stroke but then my mom told her friend who said, gee, that sounds like an ocular migraine. So I went to the eye doctor and he confirmed the symptoms. Scary!

My husband gets migraines and I think he suggested that it sounded like a migraine without the headache when I first experienced one. I can't believe the transient visual blindness diagnosis... actually I can! I once had a doctor give me a "transient Myasthenia gravis" diagnosis.

 

[lisaadele]

Yes! I've had ocular migraines too. Really bizarre when it happens- thankfully rare. Only 2 or 3 in my whole life. Flashing zig-zaggy colors around the edges of my vision and greyed out centrally so I can only see things in my peripheral vision. No headache while it's happening. Scary though - makes you wonder if you are having a stroke!

They are bizarre and really unsettling. I get them a few times during the year so not often thankfully.

 

[Lissa]

Yes, me too! I went to the hospital the first time it happened and can you believe that they were unable to tell me I'd had an ocular migraine?? They did a CAT scan, the whole 9 yards and discharged me with "transient visual blindness". I was sure I'd had a stroke but then my mom told her friend who said, gee, that sounds like an ocular migraine. So I went to the eye doctor and he confirmed the symptoms. Scary!

OMG.... Ditto here- the ER didn't know what it was! First time was in college in the 80's. Trip to hospital via ambulance. Nobody had a clue what was wrong with me. Pat on the head... Good luck with that.

Then I had another in 2004 - called my PCP and was told to get thee to an ER asap. The paramedics were clueless. The ER was clueless. They sent me to an eye specialist the next day who confirmed what it was. THEN I realized what had happened in college was the same thing.

Just about a month ago I started to have another but I knew what it was this time and just went with the flow-- if seemed to resolve quickly tho it was followed by a headache. Not as intense symptoms at least, just a little psychedelic around the edges of my vision. Hah!

Since I've had ME/CFS I've wondered how many others have experienced ocular migraines too. I've never met anyone else who's had them before!

 

[Remy]

Since I've had ME/CFS I've wondered how many others have experienced ocular migraines too. I've never met anyone else who's had them before!

I got diagnosed with Addison's disease shortly thereafter...so I think the HPA axis dysfunction and low cortisol seen in MECFS may likely be related.

 

[lisaadele]

OMG.... Ditto here- the ER didn't know what it was! First time was in college in the 80's. Trip to hospital via ambulance. Nobody had a clue what was wrong with me. Pat on the head... Good luck with that.

Then I had another in 2004 - called my PCP and was told to get thee to an ER asap. The paramedics were clueless. The ER was clueless. They sent me to an eye specialist the next day who confirmed what it was. THEN I realized what had happened in college was the same thing.

Just about a month ago I started to have another but I knew what it was this time and just went with the flow-- if seemed to resolve quickly tho it was followed by a headache. Not as intense symptoms at least, just a little psychedelic around the edges of my vision. Hah!

Since I've had ME/CFS I've wondered how many others have experienced ocular migraines too. I've never met anyone else who's had them before!

I'm glad that I didn't have to go through the ambulance scenario like you folks! It is interesting to hear of other people with this happening. When I have one it starts in the outer corner of one eye and then moves slowly across that one and then starts the same in the other. It is always like that.

 

[Bertiedog]

I got diagnosed with Addison's disease shortly thereafter...so I think the HPA axis dysfunction and low cortisol seen in MECFS may likely be related.

Do you still get frequent migraines/headaches? I also have adrenal insufficiency and Hashimotos and am steroid dependent. Very often I have no sign of head pain in the evening but within an hour of waking up and eating a bad head of varying intensity will start. I am dairy and gluten free but it hasn't really made a difference and I think there has to be a connection to the adrenals.

 

[Remy]

Do you still get frequent migraines/headaches? I also have adrenal insufficiency and Hashimotos and am steroid dependent. Very often I have no sign of head pain in the evening but within an hour of waking up and eating a bad head of varying intensity will start. I am dairy and gluten free but it hasn't really made a difference and I think there has to be a connection to the adrenals.

I don't get them like I did and I don't have any good explanation as to why.

I agree that there has to be an adrenal connection though. I think maybe the high ACTH levels pushing our adrenals for cortisol maybe plays a role. Or maybe calcium channel dysregulation. Have you thought about trying verapamil? It's a calcium channel blocker that is often helpful for migraine prophylaxis.

 

[Bertiedog]

I agree that there has to be an adrenal connection though. I think maybe the high ACTH levels pushing our adrenals for cortisol maybe plays a role. Or maybe calcium channel dysregulation. Have you thought about trying verapamil? It's a calcium channel blocker that is often helpful for migraine prophylaxis.

Thanks for your reply and no I haven't tried a calcium channel blocker but I think it might be difficult for me to switch to this because I need a low dose beta blocker to calm an over active adrenaline system which causes POTS. The 20 mg Propananol together with occasional Fludrocortisone really helps to control that but unfortunately I don't think the dose is high enough to do anything about the migraines.

Don't suppose one can take both?

 

[Remy]

Thanks for your reply and no I haven't tried a calcium channel blocker but I think it might be difficult for me to switch to this because I need a low dose beta blocker to calm an over active adrenaline system which causes POTS. The 20 mg Propananol together with occasional Fludrocortisone really helps to control that but unfortunately I don't think the dose is high enough to do anything about the migraines.

Don't suppose one can take both?

I'm not a doctor but I think you could probably take them together in low doses but that doing so might make dosing of either difficult and unpredictable. Verapamil can increase clearance of some beta blockers and their effects together can be greater than either alone. I'd probably be more inclined to try to switch over entirely or take a higher dose of the propranolol first if it was me.

 

[Eset Isadore]

I have been diagnosed (varyingly, by different doctors) with Complex Migraine with Aura, Migraine with Brainstem Aura, Hemiplegic Migraine, and possible Migralepsy. Neurology seems to me largely an art yet missing very many skillful artists - as well as a sufficiently colorful palate. (I also have had SIRS/biotoxin illness and ME/CFS plus - lately with some doses of limited function after tx and comprehensive mold remediation.) In any event, the most recent migraine specialist wants me to consider Verapamil. I’m considering... Relevant to the discussion above, I have a cousin whose has severe, disabling fibromyalgia for two decades now. My uncle, her father and himself a physician, has started to think more along the lines of adrenal insufficiency for her - in large part b/c of episodes (not entirely unlike what can happen to me) our grandmother would have that ultimately were resolved each time with low-dose prednisone. They called it adrenal insufficiency; he always felt they tested improperly and that she may have actually had Addison’s. (There’s an autoimmune streak in the family, including vitiligo for her.) That’s the most detail (and disorganized at that) I can handle tonight. Following the thread though...!

 

[Not dead yet!]

I was diagnosed with migraines long before I had any symptoms of ME/CFS, around 1999 or 2000. I'd say ME/CFS was in full swing by 2011 for me, probably triggered by an illness I had in 2006.. followed by some foot dragging by doctors about what it was that was making me feel so bad. The official confirmation of rampant EBV and CMV plus a couple of positive strains of Lyme, and a few others (we did a lot of tests)... that confirmation didn't come until last fall. Each fall I have a recurrence of a series of infections and I sometimes don't get off of antibiotics until March or April. That's been happening since around 2002.

Anyway, when my neurologist diagnosed the Migraines, what he said was that anyone who gets 4 or more headaches a month, headaches that interfere with their life, not just "oh take an aspirin and it goes away"... should ask to see a neurologist, if their doctor hasn't already referred them.

My type of migraine can cause damage at the base of the brain, the area controlling motor function. One of the first effects I noticed is a significant increase in how clumsy I am. I play a lot of reaction-time types of games. My performance is no longer superb, but I'd call it more "normal" now. I really want to avoid it becoming "poor." I also put ice on the back of my head during any headache. I've been diagnosed with more than one type of headache.

In the past few years, I have a new symptom... I often can't talk during a phase of the migraine. And the right side of my body becomes weak and nearly paralyzed. The diagnosis has now changed to "hemiplagic" migraine. It makes communicating with nurses or EMT's a real bother. Since that type of migraine is not common or even well known (ie. it's not routinely taught to EMT's and etc.), I'm frequently accused of faking or drug seeking. This is despite my telling them (when I can talk) that opiates make it worse but that toradol and saline IV help a lot.

I think it's a false equivalence to say that people who are dehydrated should drink water and that's just as good as an IV of saline. I have gut issues and kidney issues so my body doesn't process water "normally" I think. Why not be better safe than sorry, and give me an IV? It's doubly infuriating when they accuse me of drug seeking in the same breath as deny me a simple saline IV. Even my cat got sub-Q fluids. But we let humans suffer because of this false equivalence: drinking water =/= saline IV.

I no longer go to the ER. It's simply not helpful, though it could be.