I've been a migraine sufferer for many years. The earliest migraine that I remember having was probably about 15 years ago. My migraines became a real issue about two-three years ago when I began having them every day. Often times I'd wake up with them. I'd give myself medicine (like Imitrex, Excederin Migraine, etc.) and they'd go away only to reappear in the evenings again. That's when I had my first MRI (which was negative) on the open machine without the contrast.
So, I started to see a neurologist who specialized in headaches (pre-MS diagnosis). I was put on several medicines, some to prevent them (270 mg. in all per day of Inderal), something to get rid of them (Maxalt), and something to take before the expensive medicine (which was Endomethocyn). I cut out all of the caffeine and followed a headache diet. I also limited the triptans and eliminated over-the-counter headache medicines. The great news was that they were reduced to only one or two a month!!!!!
Anyway, since then, I've been diagnosed with MS (two positive MRI's). I continued having only one or two migraines a month. This past year, I've been having what I perceive is several attacks. Since Jan/Feb, I've had two attacks. I started Copaxone a month ago. I also started Celexa about a week after that (and had to stop because I didn't sleep well).
I think the new medicine(s) caused an attack. Since the emergence of the MS symptoms, I've had migraines in the mornings and the afternoons. I called the neuro, and was told to quit taking the Celexa. The migraines continued. The symptoms of the attack (the trouble swallowing, choking at night on my saliva, tremors, head bobbling) disappeared. However, my ears are ringing louder than ever, and I'm having all sorts of problems with my eyes still. I'm also noticing that I'm tripping again over my feet (today I'm noticing this . . .). I went to the neuro last week, and he's going to see if being off the Celexa for a while will help with the migraines.
If I was not such a dodo bird, I would have thought to ask the neuro these questions. However, my sister wasn't there to help me remember and I wasn't thinking. So the questions are for my friends here on this forum: 1) Are migraines common in people with MS? 2) Will MS attacks cause migraines? 3) Has any one of you Copaxonators gotten more migraines since starting Copaxone? 4) Has any of you taken Celexa? Did it cause migraines?
I'm at my witt's end with these migraines!!!! Any thoughts are appreciated.
Hi, Deb. I can answer parts of this. Migraines are very common among MSers, but of course also very common generally. Since they can cause brain lesions, interpreting the MRIs of migraine sufferers is harder. Many people here therefore have had that much more difficulty with a diagnosis. I do know that migraine brain lesions tend to be very small, but I'm not at all sure there are hard and fast rules about such things, so we are at the mercy of radiologists and neuros for interpretations (as always. Sigh.)
It will be interesting if anyone here has learned that MS attacks cause migraines. I'm guessing that if anything, the reverse might be true, due to stress.
My migraines dropped off to nothing upon menopause. I am now a Copaxonator (!) and the headaches have not resumed. I'm having every site reaction known to humankind and am really beginning to lose it, so I've been searching the web about Copaxone side effects and have not found references to migraines.
Don't know anything about Celexa. All this could turn out to be a coincidence, but I'd like to hear others' experiences. Hope you're better soon!
Thanks for getting back with me--you always give me good responses! I can't tell from my MRI's what's going on from a medical standpoint, but the doctor told me that the location of the some of the lesions, around the corpus collosum (sp), is not common for migraines. Some of them are about the size and shape of a dime--which are more indicative of MS caused lesions. When I had the MRI this last summer and just before my diagnosis and the latest MRI, I was not having migraines very much--about 1-2 a month. It was only when I started the Copaxone and Celexa that they started up. That's also when I noticed this second flare for the year begin.
Maybe with my diagnosis and starting of new meds, it's been very stressful. Even though it's nice having a diagnosis because I know what's wrong, it's also very stressful.
The Celexa is a mild antidepressant. I'm nothing but a couch potato and do little to no housework (including cooking for goodness sake!!!!), so the thought is that I may be a little depressed (a little? lol). The problem, however with the Celexa was that I got very little sleep when I took it. My neuro thinks that this is what set the migraines off.
However, I have no idea why after being off of the Celexa now for two or three weeks now, I am still having those pesky little boogers.
I did read in an article last night, that MS'ers are more likely to have migraines. Also, one article I read reported that they are correlated to brain stem lesions. However, I couldn't get to too many articles, because lo and behold--I had another migraine and had to get to bed!!!!!!
I don't think that the Copaxone has anything to do with them, either. After I looked at the side effects, not that big of percentage of people (%6) ended up with getting them.
I do hope that itching is getting under control!!!! Has anything been a relief for you? I've noticed no itching at the site of my injections, but I have noticed some really, really, ugly broken capillaries (I think that's what it is). I've been noticing the varicose veins these past two years, and now, OMG, they are REALLY disgusting to look at where I'm giving myself injections!!!! I do hope that you find something that helps with the itching.
Hi Deb; let me start off with the disclaimer that I am NOT dx'd, am not on meds for anything. I get two types of headaches.... are they related to MS at all? or independent of MS?
I have had headaches off & on for years, maybe since I was a teen; I'm now 46.
One particular type I call my migraine because it will last for that 2+ days.Probably more than 100. I wake up with them too, my eyes won't even be open yet and I just know the feeling, uh-ohh, here goes 2.5 days of pain! Never longer, go figure! OTC meds work for a few hours, I just take more when I need it. I wonder if I've stripped out my stomach yet?
I don't have any auras or spots or anything like that. I also have not gone to a specialist for them. They are on the left side (like a lot of my symptoms!!) and I would feel so much better if I could take a small smooth stone and jam it into my upper eye socket. Seriously! My son, bless him, will take his thumb and press it there for me for a minute. What a good kid I have!
My other kind, the one I got an MRI and MRA for, is a squeezy feeling on the left side of my skull. I actually had MRI's in 2/2003 and 9/2003 for these. Normal results. And then when I went to the pcp to chat about it, I said you know what? I think I'm all better, perhaps I was just dehydrated! He accepted that. I now wonder what in the world made me say that, what made him accept that, can dehydration manifest itself in one side of the skull? I wonder if it was a relapsing/remitting type of the fun of MS??
My MRI's have shown nothing; they don't even mention punctate lesions. Cool, I get all the pain of the headaches and nothing to show for it, lol.
Anyway, I was told a long time ago that my headaches could be related to "estrogen withdrawal" while on the pill. Well, noooo, I don't think so. I could get 2-3 headaches in a week and then nothing for 4 months. Highly variable! And now I am not on any meds whatsoever, I am not even good at taking vitamins, and every so often the same exact headache will visit me just for old times' sake.
When I went to see the MS neuro, she perked up at the mention of headaches. Headaches? You said you've had headaches?!
Um, yes, but NO! I had the gumption to shut her down real fast, as my symptoms are independent of the headaches. I have a lot less of the headaches lately, and as a trade-in, a lot more sensory symptoms. So I don't see the connection there.
Deflate that balloon!!
Anyway, I don't know what to make of it in relation to my own situation??
I thought I had a lot of headaches, and here you are with daily ones. I am sorry for that and hope you find relief!
I'm sorry you're having migraines, but you made me laugh!!!! I loved the "good gracious; editing error," and the "deflated balloon" comments and anecdotes. Are you a writer by profession? Your posts are hysterical, well-described, and sometimes painfully right on the money. I always look for your posts when you do.
I have taken my finger and poked it into my eye socket, and you're right--it gives some momentary relief!!!! Caffeine, asprin, Exerdrine Migraine, etc. also works momentarily, but in the long run, it produces more headaches. One thing I'm going to try, is to cut the Maxalt down to three times a week, max. All the medicines and the above things mentioned will cuase withdrawl headaches. I think I've been overdoing the Maxalt.
I'm researching right now, to find the link I found last night with migraines and MS. I'm also would like to see a comparison between the MRI of a migraine sufferer and a person with MS.
No, I'm not a writer at all. My profession is Motherhood. :D I do like to laugh and make amusing comments though. Thanks for the compliment. Sometimes when I share what I feel is a comical insight, members of my (extended) family don't respond to my attempts at humor. Really, we have to lighten up in life. How these people are so flat and unsmiling, it's enough to give me a headache!
I was once told (by my then-APRN) that I should have soda or coffee along with the OTC meds, that the caffeine would help me. Well, the med already had caffeine in it, as well as the predicament that I rarely drink soda, and I never drink coffee!
And then I started choking/gagging on the pill! Nothing like awakening the household to the sounds of a furball being retched up, and we don't have a cat!
My solution to that was to do the Mary Poppins routine of taking a spoonful of sugar to help the medicine go down. It worked, although my dh is grossed out by the idea of me actually "eating" sugar. Honey, it's that or have my head explode. Your choice my love!
So then I started "sneaking" doing it. Nothing like having a complex over ingesting pain relief, huh?
If you feel up to sharing your research on the MS/migraine connection, I'd be interested in reading it. Hope you feel better today!!
I have suffered migraines all my life ( i am 45). They used to preceed my period. Well, after hysterectomy in 2000, I would only have them maybe twice a year. (Those two times of the year were very stressful for me). When all this started happening in Jan of this year..........I had 7 migraines in 8 weeks. The ones i had to go to ER for. Oh yeah, all the bells and whistles. Honestly, I thought I would die! The difference I did notice, was they were starting in my neck and giving me horrible pain behind my left ear. I went to ENT and he discovered it was a referred pain. Anyway, I did not have anything show up on my brain MRI either..........I thought that was weird. I am now waiting for spinal MRI results. I also did a sleep apnea test on Wed. My neuro is leaning toward MS. He says it will explain alot of my sx especailly if lesions show on spinal MRI.
My thing is ...........what if none show...............then what
The whole process is enough to drive ya nuts.
I will go look at the site also..............
I felt horrible today. Could hardly move. The pain in my neck seems to be getting worse. My doc called in Hydrocordone 10 for the pain. It makes me feel strange and does not really help the pain. I know I'm hurting today because i swept and mopped and did husework yeaterday. I just could not stand it anymore.
Hope you all had a good day...........and have a great evening
I totally understand what you're saying about "hoping" your MRI is abnormal, but I have to share the other perspective with you as well...
I know you already know most of my story, but I have several ("around 30") lesions on my brain MRI, which was done with the 1.5 T machine, and still don't have a dx.
I have had several "typical" symptoms, adding my most recent relapse, and STILL don't have a dx. (from OTF, mind you)
My c-spine was "normal" (1.5 T also). I don't even know if we have a better MRI than that in this city....
I guess we'll see in a few weeks what the verdict is....
Good Luck tomorrow! :)
First not dx. as of yet they say FibroTHIS WEEK, see my journal anyhow I believe it will be MS one day.
Migraines - yuk!!! I was dx from a neuro when nothing fit what was going on and I had "spots" on a MRI no contrast quote "normal for my age" hum was not 40! anyhow he said lets go with 'complicated migraines for now" with an MS question mark. I don't get sever pain with them never had them before okay once! Never need to go to ER for pain relief like many of my friends who have typical migraines but I loss my vision and ability to talk right.
MEDS- verapmil 240 mg blood pressure med taken daily to ward off these, and axert for migraine then when I had ovaries Flova once a month works for 5 days if it was hormonal headaches.
RECENT- no migraines maybe one a month but yes I seem to flair with so many other things when this happens.
MY spots on my brain are nothing to note in the MRI reports dang it!!! I often wonder should I have mentioned my past migraines to this new neuro??? If I go to a new one I may "forget" to mention them as they are not my main concern and see what they say??
OH I do hope this made sense on that Neurotin and not liking the mood swings and dopey feeling today.
curious to see what others say.
I have heard and tried frozen water bottle on my neck with migraines (wrap in towel lay on it) it reduces the blood pressure to the head and makes the pain better. No scientific evidence but it does work.
Good luck and thanks for the post,
I know what it's like to have lots of problems with no MRI "evidence" to show for it. My first MRI was normal. Finding lesions does depend a lot on many variables with the MRI machine, contrast, and where you are in the disease process if you have MS. It was a horrific, scary, and frustrating time period in my life having neurological problems and being dismissed, unbelieved, and not on a treatment program when I knew something was very wrong. I feel for you . . .
My headache today is a little better (dull); however, it feels like my bell was rung. My ears are ringing more loudly than ever and every time I move my eyes, a loud sound burst comes from my ears!!!! Plus, I'm seeing stars (my blood pressure is not low). I posted on the eye care forum, and the doctor says to move my next regularly scheduled appointment time up. Has anyone had this experience?
Suzanne--best wishes tomorrow. My thoughts will be with you and will be hoping for your doctor to find the evidence he/she needs to find out what's wrong.
Mary--I hope that your doctor will find a medicine that will help you and not make you feel so dopey!!! I hate that feeling!!!!
I couldn't really tell you what's wrong with my Neuro...he's goofy....It's only him, it seems that's holding things up...Even if he would give me some alternative, I could live with that, but he has given me absolutely nothing, zero, zilch, nada...as far as answers go. He just avoids my direct questions now. I sincerely think he has just given up.
My appt at the MS Clinic is on May 14th. I am hoping it's sooner because I put myself on their cancellation list....
Have a great day, Deb! :)
In answer to your questions............
My neuro is hoping the spinal MRI (which I think was the C spine) will explain the horrible neck pain, the ear pain, and the left side weakness. He has already said I have partial paralasis in left leg. He thinks my problem area is C3-C4 area. As he explained to me.........this area would cause the problems I'm having.
As for hoping for abnormal MRI, I have to admit that yes I have thought that. If it's normal, then what? What would be the explaination then? I have been in so much pain the last two days I have not been able to do anything. Also, when I bend my head forward, it hurts like h e l l down my spine. If I dont at least keep the pain to a minumin, that is a migraine waiting to happen. I am praying for answers. I know too many of us are riding the limbo bus and it is so very fustrating.
Will let you know when I find out my results.
Hello my name is Joanne
i was told last year after an MRI i had MS then told several months later ldidnt have ms i was at risk of a diagnosis and to ignore the MRI Not sure i can ignore what i saw loads of white circles all over both sides of my brain! this was the result of fall aftter a dizzy episiode (one of many) but onthe subject of migraines " well they do your head in " first one i went to A/E thought i was going to die anyway they have been coming in bouts in incresing frequency since now on tripans OTC painkillers, and trying a new anticonvulsant which seems to be helping a bit migraines havent stopped but they are a little more manageable we,ll see how it goes i do think they destroy your soul. Mu neuro point blank said my migraines and ms were not related. my ms symtoms are not going away sometimes they are worse than others and possibly getting a little worse all possible vague woth no definate relapse. so diagnosis is not something that will happen soon if ever??? until something dramatic happens scarry the migraines they are scarry too.
Hi Joanne and welcome to the forum! This is a very old post. I know others on the forum would love to get to know you. I'm afraid your post may get lost in this post. I would recommend posting a separate post by clicking on the Orange button at the top to post a question and tell us a little bit about yourself-- like when you started having symptoms and what they are. I wonder why they said you didn't have MS?
Anyways, my migraines thankfully are under control. At the time, I was on the wrong medicines to prevent them. I have noticed a decrease in migraines since starting my disease modifying drug (in 2008 just prior to this post) and the MS symptoms decreasing. I think the migraines were signals that I was having disease activity. I usually get them in several straight days in a row-- and not near as frequently.
I do hope you stop having this horrible headaches, and yes, the can be very scary. Sometimes it's better to get a doctor's opinion if you're having them dizziness to rule out stroke and other things. I do get dizziness sometimes, too, and know how disconcerting this can be.
Thankyou for your reply they said no MS because you need 2 clinical features and 1 diagnostic test i have had 1 definate clincal feature 1 diagnostic test and several vaugue features that could be attributable to other things so i am at the beginning of a long journey!!!! i nthink they are trying to exclude every other possibility and my symptoms are vague compared to some others with MS but to me they are pronouced, disabling, and frightening. My neurologist said all my symptoms could be down to migraine but not sure bowt that. My migraines come in clusters also- getting several over about a week or just over - my mood and fatigue levels drop dramatically and it is like having a stroke sometimes - its amazing when it lifts. i,m a different person but the dizziness and lack of coordination coninue/ slightly worsen
I am having an awful day and I can't even write well unless I go slowly...but I too have had headaches for many years, I am 68 now. I have them on a daily basis and I have taken everything for them including norco which I am withdrawing from now, the reason for my bad days I am sure.
I went to a Headache Clinic and Headache Specialist at the UCSF Neurology Dept and he says they are Migraines, the last treatment didn't work. I go to see him again on the 1st of Feb and he is giving me botox treatments. I hope they work and I hope he is correct in his diagnosis, I am desparate for some kind of help.
Thats how I felt when I started the norco, but I started with Vicodan, I didn't really care anymore....They work but I don't want to take them anymore because I will just need more and more. I didn't think they would help migraines.
The w/d are sometimes not fun, like today.....othertimes, not so bad.
I'm so sorry you had an awful day! I've heard people say that they've had good results from botox. I hope it works out for you.
I would imagine it would be terrible withdrawing from a medicine. I went through two weeks of horrible pain just withdrawing from the caffeine, but I'm glad I did it. It did seem to help. The rebound migraines can be worse than the regular ones.
Hopefully this passes for you soon!
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