It's All In Your Head. . . . At First

A little background-- my "Classically MS" symptoms (foot drop, falls, dizziness, numbness, etc.) initially started in about 2008, and progressed thereafter (as progressive diseases are often want to do).

Even prior to then, however (after I'd finished school, back in about 1997), I had begun to suffer from Cluster Headaches. My frightful ride with CH continued episodically until 2012 (when my neuro was convinced that I was moving into chronic CH status). At that point, however, the CH instead went into remission, and I thanked God for the miracle of being relieved from this excruciating illness (traditional MS symptoms had already begun, but they were comparatively quite minor, and your deductively-impaired pal had not connected all of the dots yet).

In short, I had another form of episodically occurring neurological ailment, at the same time that many would have had an episodically occurring MS ailment (RRMS); then, when my CH passed, I went immediately to PPMS (much the same way that RRMS would evolve into SPMS). [I think this is pretty fascinating stuff, but it may just be me].

There are tons of trigger overlaps between the CH and RRMS, and as I learned more about my new friend MS, my mind could not help but draw back to the old CH experiences. Also, there seemed to be a number of female MS patients who were similarly burdened with fairly severe (vascular or migraine) headaches, as an early symptom of their MS.

Then I stumbled upon research pieces like these:


So, what do you folks think about all this stuff?

Do you know of any other MS folks who've had CH (I've heard mention of TN in recent posts, and that makes me wonder).

Also, how many of you had another type of unconventional headache as your first form of MS symptom?

What ever you do, please do NOT tell me to take two aspirin and post again in the morning. . .😜


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20 Replies

  • Hi Christopher, I used to suffer with terrible headaches, back in the 70's. They were put down as migraines. I wasn't dx until 2010 with PPMS they said I had had for at least 20 years befor dx. So whether the headaches was the onset of ms, I don't know. Cheers Jimeka

  • Interesting thoughts... Frequent headaches in my teens, 20's that became migraines in 30's and 40's but since diagnosis I rarely get them anymore.

  • Hi Gaslight, i also suffered from cluster headaches, migraines, and after diagnosis my neurologist put me on epilepsy medication topirimate daily and firocet for sudden pain. It has helped and thry have lessened since MS drug therapy also. When it gets bad i have prayed, put cold face cloth eyes, ice pack back of neck. And rub bsck of neck. Helps. I unfortunately do know how you feel. Glad our outside doesn't look like we feel. It would be grotesque.

    Praying for you!!! It is in your head, but you are not have scars.

  • Perhaps some MDs would now call some of these things comorbidities, but I had migraines and IBS for years before having what may have been a CIS about 20 years ago. I had episodes of leg pain which no doctor could explain, which I had for years after the probable CIS. Now it all makes sense, but they were mostly bewildering and non-related problems I thought. My mom, maternal grandmother, sister, and daughter all suffer (or did) from migraine, and most had or have IBS, so I only thought I had a genetic predisposition toward them. I never dreamed there could be a link with MS. Now I pray that my daughter does not develop MS.

  • Happy new year to You greaterexp. I had no idea either, like you I also suffered with IBS and now my daughter has IBS, migraines and vertigo, I just hope and pray ms is not at the back of it, as she also has RLS, but she is a nurse, so you cannot tell her anything. It is something for us all to watch out for. Hope you have a comfortable night, blessings Jimeka

  • I find this all fascinating. About 6 months ago I was diagnosed with IBS with Constipation. However, I was confused because I have normal BM when I am not going through an attack. Its only about a week before I get an attack that I get "backed up". It's painful. I also was diagnosed with migraines in my late 20's but haven't had a migraine for yrs....then all of a sudden it popped up again.

    It's not fun!

  • GasLight (and Reneeblessed ) as a person who suffers with TN, and a healthcare provider who has treated patients with CH, I am so sorry for the pain you have experienced!

    @reneeblessed I have seen the facial contortions of those presenting with CH pain. The pain is visible. 😬🙁

    I think they've found gene markers that are in common with migraine and MS.

    I wonder if those who have Optic migraines (can be migraine with only loss of vision) are in deed having ON optic neuritis as a first MS sign?

    . For u Christopher, how did they determine RRMS to PPMS versus SPMS for you?

    I've asked my neuro which I have, she said at this point it doesn't matter since there's nothing yet available to treat either.

    Thanks for posting your intriguing story.

  • Hi GasLight I used to get migraines so bad that l would end up in the hospital for 3 days. 😢 Found out that l had a server allergic reaction to nutra sweet and aspertine (guess on the spelling) lol Now l don't get them as bad Thank You God!!!


  • Thanks for everyone's input.

    Just to clarify, I was never diagnosed with RRMS.

    Over my adult life, however, I've been diagnosed with two separate neuro problems, and those two illnesses appear to have briefly overlapped for a period of time (CH from 1997 to 2012, and PPMS from ~2008 to present).

    My only reason for mentioning RRMS/SPMS was to note similarities between the progression of RRMS to SPMS, and what had happened in my own case (CH, followed by PPMS). Also, one cannot help but note the similar triggers, episodic nature, etc., that are common to both CH and RRMS.

    I'm not a physician, of course, but I find the parallels somewhat compelling.

    Sorry for any confusion.

    Reneeblessed, I don't know about you, but enduring the very difficult CH experience actually helped prepare me for PPMS, by galvanizing my constitution and my faith. My reaction at being diagnosed with PPMS was: 'the Lord carried me through CH, and He carry me through this storm, too.'


  • Amen!!!!

  • I had migraine like headaches for years (in my late 30's and early 40's) and was on a medication that helped some but could be bad for the heart, at high doses. During this time I was telling my doctor that I had signs of menopause but he just said I was to young. I finally went to a gynecologist and she tested my hormone levels and found that I was in peri menopause (that is what it is called while it is happening), put me on hormone replacement therapy and the headaches went away. About 6 months later my regular doctor asked why I had not gotten my migraine medication refilled in a while and I explained about what the gynecologist had found, he said, "Oops!"

  • As far back as 7 yrs ago I started w/ chronic headaches. I had also started a new job in an office that may or may not have had mold issues. I blamed my headaches on "something in the office" and on neck pain as I had a neck injury at a young age. I went to the Ortho finally for neck scans. Nothing. At least nothing that would cause the headaches....then they were gone. Then they came back...and so forth and so on. Then in February of 2016 it came back with a vengeance. Except this time, two weeks after the headache started, I also went numb down my right side for close to 6 wks. This is what got me diagnosed. My headache still hasn't gone away at this time. Oh, there are days when I THINK it's gone....but it's not. It's just so mild in comparison to what it is most days.

    Not sure if this is what you were looking for....but you said headache, and I have that for sure! :)


  • Actually, cassielynn71, that's very much what I'm talking about. Again, I'm no physician, but it seems that an extraordinarily high percentage of MS sufferers experience some form of severe/chronic headache as a precursor to their disease's onset.

    I'm so sorry to hear that you're still suffering. So, it's 10 months without any relief? Yikes!! I'll definitely have you in my prayers.


  • The fiorecet has caffeine in it and I'm ultra sensitive to caffeine so I can't take it past lunch or I'm up all night. Nothing else seems to work tho. I guess I'm getting used to it. I mean it still wears me down some days but for the most part as long as I'm busy or distracted I'm okay 😊.

    And as far as why i have it; I figure your brain can't accumulate all these lesions without causing some kind head pain at one time or another...? No? It could be worse, so I'm counting my blessings 😊

  • I am undiagnosed still. I have seen my new neurologist twice now and really like him, so I feel like if it is MS, I trust him to finally figure it out.

    For the first time in my life I have an actual diagnosis for my migraines. Even my first neurologist didn't tell me (this board helped me kick him to the curb!).

    So I guess what I have is TAC headaches (Trigeminal Autonomic Cephalgias). He said I have a sub-group of cluster headaches. I can't believe after all these years I have a name!

    I have no idea if it is a first symptom (yet). They started when I was 19. At 20 I had numbness in my right leg. Then I had babies and got better. When I am pregnant I get zero migraines. Then I started to get worse again maybe 38? I'm 44 now.

    Very interesting question!

  • cheshcat, I was unfamiliar with this subgroup of TAC, and appreciate your sharing. It is truly fascinating to learn more about these various conditions and their interrelationships with one another (particularly in the area of neuroscience).

    Exploring the neuro-world seems much like the area of undersea exploration, though-- what we fully know and understand is but a mustard seed, in proportion to what's really there . . .

    When reviewing TAC, I noticed that the drug Indomethacin is often prescribed with success. I had never even heard of this drug before (but its been many years since I went into remission and stopped following this area so closely). Has your new neuro mentioned Indomethacin yet?

    In my case, the neuros always issued Imitrex injections (which could be taken up to 2x/day), and those shots were the only thing standing between you and CH, until the cluster cycle had been "broken" (using a cocktail of extremely high dose Prednisone, Verapamil, and several other naughty bits).

    Having a good neurologist means so very much. I hope that you will keep us all posted on your exciting progress with this new team. I will have you very much in my prayers.


  • I love that! It is somewhat like undersea exploration! My new neuro listens to me and explains things to me and seems to actually care! He's really young, which is partly why I picked him and he said in his profile he liked to have a relationship with his clients. So far it's correct. He was smiling in his picture too :)

    Imitrex works for me, so I've stayed with that. I've taken topomax for prevention (it did ok but only at higher doses and then my memory left me which I didn't like). I haven't taken any other prevention. When I had some sort of exasperation late summer they diagnosed me with TIA's and took me off Imitrex, it was really hard the months I couldn't take it. I really only get 1-2 headaches a month but they last 2-3 days and without Imitrex it was rough. The new neuro let me take it again because he feels it's my nervous system mis-firing. He just doesn't know why yet. He's leaning towards PTSD - which I'm rolling with for now because I'm not in a flare, just dealing with residual stuff and I have faith once I have another flare (I mean I'm hoping I don't but being realistic) he will figure it out.

    I wonder if there is a connection to MS with certain migraines or is it all migraines. I love this question, thanks for asking!

  • Really great post GasLight we got some great answers here!😊 I don't think anyone would have put that together.


  • I wondered about the migraine/MS connection as well. I started having migraines wen i was 14. And mine were Optical which is where my lesions are located.

    Very interesting post

  • I love hearing you talk about those awful headaches in the past tense, Midgey_Midge06, and I certainly hope that yours have actually stopped (like mine did back in 2012).

    Lord willing, I hope to be getting established with a regular neurologist (as opposed to the ones in the ER) very soon.

    One of the best things about starting such a relationship, in my view, will be to have the discussion that you just referenced-- Where exactly are these lesions? How can their specific location help explain my ongoing symptom experience? What overlap (if any) does the situs of those lesions have with the location of my prior CH activity?

    If I had to guess, I'd expect some lesions over on the right side, in the orbital neighborhood, just like you. ;)

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