how many of us have been diagnosed with something else first?

I am just wondering how many of us have had the experience of being told they have one thing, like Menieres for example, only to be told later, many years later that it is migraine?

I am also wondering how many of us have had medication for the other diagnosis that might have contributed to making things worse, or have even had operations as a result?

Is there enough information available for newbies in this situation to see the possible links and confusions of diagnosis between some of these so linked conditions?

Is there anything we can do to add info for people in the future?

Di

Di,
Great minds. I have just been playing around with the poll on here re Butterbur.
Doesn't lend it self too well, or maybe its just me...

I had IBS for years, then I got menstrual migraines, then CFS which evolved into Fibro and the migraines hit.
Between the CFS and migraines came some thyroid problems.

I set up the FB page for these co morbids...there are a lot of us on there.

Good idea. Pity we cant have a few statics on here. It can be hard to trawl through and even search, with a bad head.

Mine was the other way around--I was first diagnosed with migraines and Chronic Daily Headache, and turns out it was New Daily Persistent Headaches with very infrequent migraines. It took dozens of doctors to find one who actually took a complete history instead of going off of what the other doctors had said for my diagnosis. It is now very obvious that NDPH fits my symptoms. Didn't make much of a difference in my treatment except the doctors realized that no wonder the migraine treatment weren't working (NDPH is notoriously much more stubborn). I still think there is something else going on with me due to various odd symptoms that started around the same time. Getting a fibro evaluation soon. I don't think any of the meds made my condition worse, but they sure didn't help. I was very proactive in my treatment and still I missed this. It was so odd with all the time on the boards I spent that I didn't realize I had been misdiagnosed for 3 years (I've had the condition for 4.5 years).

my diagnosis in the late 1980's was "multiple chemical sensitivity", or MCS. because my major migraines seemed to come on after exposures to road fumes, while driving the california freeways, that's what i thought, too.

then in the 1990's i got the diagnoses of FIBROMYALGIA and LYME DISEASE. hey, they can both produce horrific headaches.

now, i know that those other diagnoses are likely accurate, but probably the primary cause of all my distress is the neurological disorder of migraine. i'm now blessed with daily M's.

i've tried nearly every treatment known, at huge expense. nothing has helped, so now am trying the cheap butterbur. too soon to tell if it's helping. dianne

I hope it does Dianne, please check the Butterbur poll thing I set up.
Its a bit crap but I couldn't do it any better.

i registered my vote. also promise to post after 2 months on the stuff. dianne

Thanks Dianne, knew you would

I was diagnosed with hypoglycemia and with chronic sinus. Both, i've found out since, are commonly misdiognosed when the real culprit is migraine. I was diagnosed with migraine 17 or 18 years ago but they were only the headache symptom of migraine along with the nausea that absolutely nothing would touch. After my son was born nothing - until almost 14 years later - or so we thought! I've had the sinus and the hypoglycemia issues the entire time - they've gotten worse over the years and made a major change about two years ago. Then this year with the non stop neurological issues that landed me in the hospital.

Thankyou for writing about this. I am shocked at our time scales. It has taken a long time indeed for us.

Can we create a list of the things they confuse migraine with for future people? I just hate to think of others going through the same long winded voyage for the sake of info we all have.


regards

Di