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Headache Poll Mk2 - with "none" option

Sorry everyone - I'lll try again.

Are headaches and / or migraines part of your MS?

Sorry about the lack of "no" answers before
13 Responses
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Avatar universal
I can remember having migraines as far back as the third grade.  Although, they were very infrequent and included auras, pain, and vomiting.  They were never treated/diagnosed until my late 20's, when I saw my first (and current) neurologist.  

At that time my migraines were becoming worse and was only just diagnosed with MS.  We started treating the migraines at that time.

I take Inderal LA 160mg for migraines and Amitriptyline 100mg for nerve pain.  I think they help.  There are times when the migraines last for days.  I don't want to know what my head would feel like if I were not on these medications.  

I've had to switch from Imitrex to Relpax as Imitrex did nothing for me.  When we were trying to figure out which med to switch to my neuro sent me home with his 'bag-of-triptans'.  

Interesting note:  I have an 'allergic' reaction to aspartame.  It gives me migraines.  One of the triptans contains aspartame as an ingredient.  Why would a med that you are supposed to swallow whole need a sweetener?!

Anyway, I have never heard from any of my docs, that the migraines and MS are or are not related.  I do not recall having an exacerbation and a migraine at the same time.
Helpful - 0
Avatar universal
Hi,....ANA....not sure. Is that the rhumatoid factor thingo? Oh blimey I shouldn't come on here at 6am, the brain isn't happening yet !

My lesions are many and widespread. I've actually got all of my first MRI pics on this computer, so give me a few hours and I'll upload them in here.

I've got the standard "multiple pervientricular WMLs" and "some coprus callosum involvement" but "no Dawson's fingers". I've got a nice one on my cerebellum. None on the brain stem and none visible on the spinal cord.

Sometimes I still reckon the neuro is wrong and it's something else like neurosarcoidosis,  or something else entirely, becasue the last radiologist to interpret the MRIs said "bilateral subependymal nodularity", and if you google that, it's got absoltey NOTHING to do with MS. No one in here has ever heard of it in relation to MS. Yet my mental-case neuro reckoned it's part of it.

I dunno.....
Helpful - 0
Avatar universal
It is not daft.  Something I have wondered about before that surgery even came arount--andmore so since then.  But, some medical people told me that I just think too much.

Well, I was in the medical field and a researcher--so, I guess it goes with the territory.  

Out of curiosity, did they ever do an ANA on you?  And where are your lesions?

I have one neuro I consult like my primary and one specifically for the MS.  The first neuro says that they are probably separate; the MS neuro's office told me that a large percentage of people with MS do suffer migraines.

Migraines debilitated me before my MS diagnosis.  Although I figured I had autoimmune dysfunction and had to prove it to my physicians from whence they started searching before I became disabled due to my migraines.

This is a good post!!!
Helpful - 0
Avatar universal
Yes I do have headaches along with MS though I am not sure if the headaches are because of MS or not.  I have had migranes since high school.  They are the reason I had the MRI which eventually stumbled on (at 31) and helped me to get the MS dx, however my Neuro thinks that they are actually separate.  
Helpful - 0
Avatar universal
Migraines were how I ended up being diagnosed, but I am not sure they are my most annoying symptom since I am used to them. I think the hand spasms are my most annoying symptom,
Helpful - 0
1253197 tn?1331209110
I had many headaches when I was first dx'd with MS but amnot sure if it was related as a naturapath told me they were due to candida of the gut and once treated they disappeaered.

I do get headaches but think they are just normal ones (normally hormonal related to monthly cycle) and think for me other symptoms of MS are more annoying/debilitating.

I do not get migraines.

Sarah
Helpful - 0
738075 tn?1330575844
I've never had migraines or even frequent tension headaches.  I often got them the day my menstrual cycle started for a few hours, but then they subsided.
Helpful - 0
1421489 tn?1285525635
Hi Jem,

As a teenager I got migraines - not often, about once a term so say 3 times a year - during which I got the blind patch for an hour or so followed by the crazy headache. Without fail though, each time I got one I'd have to sleep for about 6 hours and all would be ok.

I was diagnosed with MS last year at 27 and haven't had a migraine since I was 21, so I've gone with a 'no' in your survey. I'm guessing my migraines were more related to a genetic predisposition as my dad / aunt / grandma all suffer(ed) quite badly from them.

Jep
Helpful - 0
Avatar universal
Well even this little poll seems in keeping with other proper studies that have been done. Seems 30% of our respondants have headaches/migraines as a regular part of their lives with MS. Another 10% as a first symptom.

That'd equal, one would presume (AH Presuming! How scientific!) the 'one in three' figure that is frequently thrown about.

Now I'm wondering if those with the headaches have vascular issues which would make them more likely candidates for that CCSVI treatment........hmmmm.....the plot thickens.

If that sounded daft, I'd like to add I only just got out of bed and haven't had sufficient caffeine yet to make sense.

Cheers.
Helpful - 0
Avatar universal
I have had migraines--severe intractable ones that gave me disability for about twenty years.  I had recently been diagnosed with MS.  Several neuro say they are not due to MS.

My feelings is that both answers related and unrelated is correct.  You can have migraines triggered by things not directly related to your MS--and perhaps we are more sensitive due to our inflammations.  And, I think that the increased immune response seen in MS does also contribute to migraines.  I was recently informed by an MS Center that one in three MS patients have migraines.  

And that people with extremely severe prolonged migraines are more apt to develop MS.  That does not mean that they will--that they are just of greater propensity to do so.  Perhaps there is a common genetic link.  As MS can affect the trigeminal nerve and the trigeminal nerve can initiate a migraine and other pain--I should think that it could be conceivably argued or deduced that they may be related.  If not in a primary fashion--certainly, I think, in a secondary or tertiary fashion.  

I am not an medical doctor.  But, I have had some nursing, a nurclear med tech license, EMT training, med tech training, did home health and a medical office physician assistant.  There is some connection, it seems to me....

Even when our eyes get too much light, people may sneeze, because of the overflow of impulses that trigger the nerve to sneeze.  Seems to me that I sense similar causations of symptoms within myself.

Hope this helps!!!
Helpful - 0
572651 tn?1530999357
I am so thankful I don't get migraines - my DIL does and it is debilitating at times for her, which is tough with three young children. And yes, she has seen a neuro and had an MRI done. They have them under control right now with meds.

Good idea for a poll, JJ.
Lu
Helpful - 0
1221035 tn?1301000508
Yes...migraines were my first and are my most debilitating symptom. I suffer migraines about 3 times a week.
Helpful - 0
923105 tn?1341827649
Hi Jem,

My migraines are normally set off by eating certain foods, certain shop lighting - and also bright Sun.

Yes I do get headaches - quite frequently - not sure if they are MS related though.  Something I will have to my Neuro about, as I had never thought that the both could be connected:/

Debs
Helpful - 0
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