Migraineurs Support User Group
Welcome to the Migraineurs Support Group
About This Group:

A place for migraineurs to discuss anything and everything related to migraines. Topic suggestions: Think of this as a support group for migraineurs. Reach out to group members when ever you need support. Give your support to fellow migraineurs. You, as a migraineur yourself, probably have a wealth of knowledge to share with others. The knowledge that you have could vastly improve the quality of life for another group member. Share share share! Discuss your current acute and preventative treatment plans. Ask others about their current acute and preventative treatment plans. Discuss past acute and preventative treatment plans as well... we can always learn something from what didn't work! Discuss your own personal tips and tricks for lessening the severity of acute migraine attacks. Post about your upcoming GP or Neurologist appointments. Ask other group members questions about what to expect and suggestions on how to prepare. Update fellow group members on your progress... both on set backs (so that we can provide support, suggestions and hope!) and on successes (so that we can congratulate you and so that you can provide other group members with hope!).

Founded by marileew on September 27, 2009
197 members
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Welcome to the Migraineurs Support Group<img src='/RoR/images/blank.png' class='icon_img_ww push_pin_icon'>

Hello and welcome!

This is a forum that is dedicated entirely to the topic of migraines. It is a place for migraineurs to discuss everything and anything related to migraines.

Thank you for joining this group. We hope that you will find this group helpful. We are sure that you will be able to help fellow migraineurs by providing them with support as well as your own knowledge about migraines. With all of our knowledge pooled together, this could become a wonderful resource.

Feel free to introduce yourself here in this thread. If you want, you can let people know what type of migraine you suffer from and anything else you briefly wish to share about your migraines (how long you've had migraines for, etc.). You can also tell us about non-migraine aspects of your life as well, such as your profession and any hobbies you might have.

Thanks again for joining the group.
20 Comments
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Hi, I've just joined this forum, for obvious reasons...the attack of the migraines!  I'm battling one right now & this is the 3rd day.  I am going to get myself to the doctors this week & get some prescription medication for them, as taking a combination of ibuprofen & maxolon is not really helping or the combination of panadol & maxolon.  The maxolon wipes me out totally needless to say.

The thing is I especially only get them at the beginning of my monthly cycle.  I'm on a contraceptive - so its when I take the sugar pills, is when I get them.  I need to stay on the contraceptive as it keeps the endometriosis at bay.  Catch 22 there!  I also get migraines 72 hours after I have consumed too much ice-cream, cream or full cream milk.  Sometimes it will only take a small amount of these foods to set them off.  

I'm not working at the moment - but really want to get these migraines under control as in the past I've had many sick days from them, & I don't think any employer likes their employee to have much time off.  Especially when they are unforeseen days!  

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I am the wife of a sufferer. He's had cluster and migraine headaches since he was 16 but this last bout has now lasted 6 months of 24/7 migraine with clusters that come and go and no one has been able to stop the cycle.

He currently lives in a dark room with sunglasses on and cannot work or do much of anything. Talk about depressing.

Even morphine isn't taking care of it this time.
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Hi jellybean14fun!

I noticed that you said you take maxolon (Metoclopramide)! Do you take tablets? I take that too sometimes! They also give it to me in the hospital via IV. I haven't met anyone else that takes maxolon (Metoclopramide) tablets before other than me... so that's so neat meeting you since you take them too! :)

Yeah... I find that ibuprofen does NOTHING for my migraines at all. In fact, it just makes my migraines worse!! Same with panadol/acetaminophen... doesn't help and makes my migraines worse! It's good that you are going to the doctor to get other medication!!

Have you ever taken triptans before? Has your doctor ever mentioned them? They are migraine medication. Good triptans are triptans that are quickly released into the system (Mazalt-MLTs orally disintegrating tablets; Zomig-ZMT orally disintegrating tablets; Zomig Nasal Spray; Imitrex orally disintegrating tablets; Imitrex Injection; Imitrex Nasal Spray). It is important to get a triptan that is either an orally disintegrating tablet or a nasal spray (or in extreme cases an injection) because they work in 10 to 15 minutes for nasal sprays and injections and 30 minutes for orally disintegrating tablet.... but regular tablets take an hour to two hours to work. That is why it is so important to get a nasal spray, an injection or an orally disintegrating tablet and NOT a regular tablet. Some people can't take triptans, like for some patients with heart disease or for some patients that take some very old types of antidepressants called MAOIs (SSRIs and triptans are usually fine but your doctor will tell you if there is a possible interaction or not) or for some people with uncontrolled hypertension, or for migraineurs who take DHE for their migraines at the same time or for people who have hemiplegic or basilar migraine... so... yeah... some people can't take triptans... but a lot of people can... so... if you haven't talked to your doctor about triptans before, you totally should because they work awesome, WAY better than panadol or ibuprofen! :)

Let us know how the doctor's appointment goes and what types of new medication the doctor gives you and how it works out. And i hope that 3 day migraine goes away ASAP!! That is too long to have a headache for!!! :(
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Hi Liora,

Has your husband ever been given oxygen at the hospital for his headaches? Sometimes that works better than the morphine? If your husband has not been to the hospital for oxygen... maybe you should take him to emergency and let them know "My husband gets migraines and cluster headaches, he is suffering from a cluster headaches. He has never had oxygen before but I want him to try it because nothing else has worked and he is suffering." They will go over his history and make sure it is safe to give him oxygen (watch to make sure they do this and ask questions... because although it is just oxygen, there are risks with giving oxygen). Then they will give him an oxygen mask or they will put him in an oxygen room or an oxygen tent or an oxygen barrel thing but most likely they will just give him an oxygen mask because that is what they normally do. Oxygen works better than Sumatriptan or morphine or anything for cluster headaches in most situations. My doctor just told me that some sort of steroid shots or tablets apparently can be a treatment for cluster headaches too... but I have no idea about this at all, the hospital would know and would decide if this was appropriate. I am sure your husband has probably tried that too though? If not... I can get more information from my doctor for you... let me know.

Also, does your husband find that the morphine aggravates some of his headache symptoms... like does he ever experience nausea, etc.? If so, maybe another similar type of medication would be more appropriate, but you would have to ask his doctor. The type of medication that I use for my severe migraines is called hydromorphone and it does not have the nausea associated with it that morphine does.. and I find that since nausea is already so bad with migraine, then it is awful to give a drug that just makes nausea worse like morphine. Hydromorphone is also 8 times stronger than morphine, BUT oddly enough it has a lower dependency profile (that means that people are less likely to get addicted to it or to suffer withdrawal symptoms.. and personally, that is something that is important to me, because I don't want to be given addictive drugs if I have a choice). BUT only your husband's doctor would know if another type of pain killer other than morphine was an appropriate alternative for your husband or not.

I hope that your husband feels better soon. Chronic migraines are such a disability and they can be very depressing. It is good that he has you in his life and that you are working so hard to help him. You are a wonderful wife!
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Thank you for your comments Marileew, we have an oxygen tank in the house that he uses for clusters. Yesterday was a particularly bad day with both the cluster and regular migraine that is there 24/7.

They have him on the new long acting morphine which seems to be ineffective at this point. He's only been on it this time around for 2 weeks. They wanted him to take that while he stopped all other pain relievers except his injectible Toridol and Fio something. The oxygen treatments were the best thing we ever found for cluster headaches and when he has no migraine but just the clusters, it's a godsend.

Triptans have no effect on him. Most meds don't work. He's had acupuncture, hypnosis, chiropractic. The chiropractic actually made them worse so he will not consider that again.

He was in the service - heavy combat for 15 years of his life, I wonder if something happened during that time that left lasting effects that are just starting to manifest for this particular round that has lasted since last February, but he's had these types of headaches since he was 16.

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Hi all,

I just joined this group, but have had migraines since I was about 12.  I'm 33 now, and trying harder than ever to get them under control.  I get incapacitating migraines (with aura) 2-3 times per month, and the headache phase almost never lasts more than a day, although postdrome can go on for several days, so I am very lucky compared to some.  I also have chronic daily headaches, which very likely contribute to the migraines - as we all know, every factor adds up!  Sometimes I have what I guess are silent migraines, in that I feel migrainey but don't have the horrible pain, just that odd pain I usually get in the aura phase, plus aura and sometimes problems with speech, which also accompany my normal migraines.

So far, nothing works for the daily headaches.  Anything over the counter doesn't stop or lessen them unless I take more than the recommended daily dose, and with the risk of rebound headaches it's generally just not worth it.  For the migraines, I've tried 6 different triptans, and the only one that works at all is Relpax, but that only has a limited effect.  I recently tried going on propranolol (a beta blocker) as a preventative, but reacted badly to it.  Nausea, cold sweats, extreme dizziness, stomach cramps - the "call your doctor at once" symptoms - so my doctor had me stop taking it after only a few days.  Now I'm on amitriptyline (20 mg before bedtime), which she thought might help the daily headaches, but my head is hurting right now, so...  it hasn't really had much of effect so far, but I'll try it for at least a month to see if I have fewer migraines.  

Tomorrow, I'm going to a neurologist, so we'll see what s/he has to say.  I first went to a neurologist my senior year of college, and she put me on Prozac for my headaches.  I pretty much hated that, and once I was off it I didn't go to a doctor for my headaches for a very long time.

On the pain scale, I'd put my daily headaches between 3 and 6 depending on the day, most migraines 7-9, and the worst pain I ever had was after a spinal tap that didn't close right.  My roommates took me to the ER for a particularly bad migraine that had me hyperventilating (unusual) and vomiting (normal back then), and they did a spinal tap to test me for meningitis.  I'm in the tiny percentage of people where the hole in the spine does not close, but continues to leak cerebrospinal fluid.  And it was 3 or 4 DAYS before my insurance company would let me get a blood patch.  I literally could not stand up straight, because my poor brain lacked the cushioning it needs, and spent those days lying on the couch in so much pain that I would hallucinate.  When I finally got the blood patch, I was able to sit up within half an hour.  Stupid insurance companies!

I love the migraine tracker on this site, although I am sometimes bad about updating it.  Do any of you read http://headacheandmigrainenews.com/ ?  I have it in my RSS feed, and it often has interesting tidbits.

Right now, I'm really interested in PFO, and would like to be tested for it.  It would explain the daily headaches as well as the migraines, but the sad thing is that I have the impression that it's generally not closed if you only have migraines and haven't had a stroke, which seems silly to me.

Anyway, it's nice to 'meet' you all!

- Robyn
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Hi Robyn!

Nice to 'meet' you too!!

I've been getting migraines since I was a kid as well... although they were misdiagnosed as sinus headaches until I was an adult... then all the doctors said "Oops! Those were migraines!!"

Incapacitating migraines are awful... they get in the way of things like work, school, family time and time with friends. Even missing 1 day of work or family time to a migraine a month is too much... and you're missing at least a few days because of them, which definitely isn't fair!

Also... the chronic daily headaches, I used to have a chronic daily headache that never went away too and for me they were so frustrating and annoying even if they weren't as bad as the migraines. I'm sorry that you have those as well. My daily chronic headaches may have been caused because I was on the wrong treatment plan for my migraines and the treatment plan was actually giving me rebound headaches... I had originally been taking 1000mg of advil at a time quite often, and advil is a known headache trigger, especially for chronic headaches. Also, the chronic headaches may have been reduced after I started taking topamax, an anticonvulsant that is often used to treat migraines and other types of chronic pain.

I can understand why you hated the Prozac... I took a medication with a similar side-effect and withdrawal profile called Effexor and my doctor actually thought it made my headaches worse, not better, which is why I was taken off of it. For many people, Prozac and Effexor, specifically, can cause headaches or make headaches worse. Other antidepressants can be great treatments for headaches... especially the one you are currently taking, amitriptyline, it is a very well-known headache treatment... but not prozac for headaches!!! So, it makes sense to me that it didn't work and that you didn't like it.

As for the propranolol... I have heard that it has a very high side-effect profile too... so much so that I thought it often wasn't prescribed as much anymore for migraines... I read some people on medhelp who take it and it works great for them, so I'd never discount it as a treatment... but yeah, the side-effect profile is rather high... so, maybe a different type of betablocker would be a worthwhile shot in the future. A few of us on here are taking the betablocker nadolol.

Let us know how the appointment with the neurologist goes. I've seen 4 different neurologists over the years... one of them was the most horrible doctor I've ever seen. He was so vile that I left his office crying and felt traumatized for days and didn't go back to the doctor for a while... but then my doctor got a referral to a different neurologist who I could tell was really smart and who really tried to help me... but, the entire time I'd been waiting for a referral to go through to a doctor that people call the best neurologist in canada... it took years to get the appointment, but i finally did, and then I switched to him. But... your story about not going back after the unhelpful doctor... it is a familiar one and I am glad you are giving neurologists a shot again, because eventually you will find a neurologist that helps... and I hope it is the one that you see tomorrow!!! :)

Also... wow, what a horrible story about the insurance company!! I agree, stupid insurance companies!! It's different for me because I live in Canada where our government is our main insurance company and will pretty much approve anything instantly as long as a doctor suggested it... and our private insurance companies only really deal with prescriptions, dentists, eye-glasses and things like massage or chiropractors (non-doctor stuff), and private insurance rarely refuse to cover something but most of the time they will only cover a small amount of it like $10 if the thing costs $100, haha, it's almost silly sometimes... like today I bought a prescription that cost $50 and my private insurance paid for $3 or something, hahaha, I wonder why they bother to pay for the $3, hardly seems worth it! But... our problem in Canada is that we have waitlists... loooong waitlists, so even though you always get approved for procedures if the doctor says so, you have to wait days, months, sometimes years to have it done depending on what it is. So, a similar situation, just for a different reason... so I totally agree, stupid insurance companies/waitlists!!  

I'm glad to hear that you're using the migraine tracker and finding it helpful! I know it's hard to update it though... everyone says that, and I used to never update my migraine diaries at all when they weren't on the computer.... I was the worst at tracking my migraines. Medhelp has helped me with that because I find it easier to do it on my computer... because I have to check my email and school account every day, so I'm reminded to update it since I'm already on the computer doing other things. I think that practice makes perfect really... you'll get better at tracking them and hopefully soon you won't need to track them because they'll be gone!

Also thanks for that link!! I'm always looking for new migraine news... so that's a great resource. Thanks!!! :)

- Marilee
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Thanks for the very thorough response, Marilee!

I went to the neurologist last week... and that was the most combative appointment I've ever had!  He would cut me off when I tried to describe my symptons or ask questions, and if I answered more than yes or no to any of his questions he would get annoyed.  He basically made me feel like he couldn't wait to get me out of his office.  I was originally given a referral for another doctor in the same office, but he was booked up for 3 months and this one had an opening right away.  I think I'll call and ask that my follow up be with the other doctor.

Anyway, this doctor prescribed a muscle relaxant to see if my daily headaches are caused by muscle tension, which I definitely have in my neck and shoulders.  It's been about a week, and so far the dailys are less frequent and less severe.  If that also translates into fewer migraines, that would be excellent.  The only thing is, he has me taking them two or three times a day for two weeks, and then "as needed"...  I'm not sure that's a viable plan and will be looking into drug-free methods for reducing muscle tension, like the Alexander Technique:http://www.alexandertechnique.com/.  

I'll let you know if I have any success with that :)

I'm glad you liked the link - it has a lot of information, and is a really great way to keep track of migraine treatment studies.

- Robyn
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Hi!

Thought this looked like an interesting little group - I've battled with migraine for just over ten years now and really struggle to get decent advice that doesn't all revolve around medication... needless to say I've got my own special cocktail I take when the migraine stikes (cafergot, ibuprofen or asprin, maxalon) and I take topamax to keep them at bay.  

I see a chiropractor and have a massage every 6 weeks to keep my neck from getting too tense, and I try to swim a couple of times a week to de-stress too :)

Would love to know if anyone else experiences a dilated pupil with their migraines - I've been given the all clear neurologically and the scans etc all normal, specialist is sure it's due to migraine. He just hadn't seen it before so I'm curious if anyone else has it???

Anyways, looking forward to checking out the forum a bit more.

-Gill
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Thanks for the invite!!!!
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768044_tn?1294227036
Hi msniki412,

Thank you for joining the group!

- marilee :)
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1056589_tn?1273750702
Hi All!
I am new to the world of migraines. My neuro dx me with complicated migraines(aura). I also get daily headaches..I was dx with Transverse Myelitis back in 7/09 but had been having problems since 1/09. Since then I have been dealing with migraines. I also recently found out I have 15 brain lesions that were missed earlier.I am now facing a possible MS Dx now too. My neuro gave my Imetrex. I have not had a migraine since my it was prescribed. I am a bit nervous to take it anyway.My mimic stroke and I am scared of the side effects and complications.
take care.....
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Thanks, Marilee, for inviting me to join the group!  I'll look forward to hopefully getting to know you all and learning from how you deal with your migraines, too.  I've never had a whole "community" off of which to bounce this problem.  Most people just think they're just really bad headaches.  I mean, I've always known there are lots of other people out there, but have never had the opportunity to trade ideas and solutions with anyone else.  Thanks for this opportunity!

Jaye
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Hi Jaye!

I am glad you've joined! I'm looking forward to getting to know you too, I always enjoy meeting other migraineurs and finding out about their migraine experience and their treatment plans.

I know what you mean about how other people think they're "just bad headaches". I've met people who think that way too! We need to change that old paradigm of "just a headache"! We need to let people know that migraine is a neurological disease and migraine attacks are very disabling! Hopefully we can educate people so that they will understand.

- marilee :)
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Hi StormyRenee,

I know I've talked to you already before a few times but... Thank you for joining the group!

Have you taken the Imitrex yet? If so did you have any adverse reaction to it? Let me know how it goes.

- marilee :)

---

For everyone else reading this,

StormyRenee has pointed out something very important here: not all migraineurs can take triptans.

There are two types of migraines where triptans are counterindicated: Hemiplegic migraine and Basilar artery migraine. Hemiplegic migraine mimics stroke (and is sometimes referred to as a "complicated migraine") and Basilar artery migraine includes symptoms that relate to dysfunction of the brain stem such as vertigo, fainting and many stroke-like symptoms. If you suffer from these types of migraine, then you should not use triptans unless your neurologist has prescribed them.

If you do have Hemiplegic migraine or Basilar artery migraine and your neurologist has prescribed a triptan for some reason, then you should carefully read the patient information that comes with the triptan so that you will be able to recognize adverse reactions and if such an adverse reaction were to occur after taking a triptan you would be able to quickly call your health care professional or seek emergency treatment. Although, if your neurologist has prescribed the triptan, they have likely done so with reason and the probability of having an adverse reaction is probably quite low.

- marilee :)
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479581_tn?1317761088
Hi....First my apologies for not responding sooner to your invitation to join this group last September.  I haven't been on Medhelp since my mother's death last year.  

I have suffered from migraines since my teens(I'm now 54) and have probably tried every medication at least once. Currently I take a low dose of topamax daily which gives me pretty good control.
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Welcome!  I'm sorry for your loss of your mom.  I'm glad you have a medicine that's working fairly well for your migraines.
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I am 18, when I was 15 I began to suffer from disabling basilar artery miagranes that mimicked strokes. I get aches, weakness/paralysis, intense aura, vision issues, vertigo, shakiness, and balance disturbances. I dropped out of school because I could not function. I've had diagnostic testing- ct scans, MRI and the strobe light/ seizure tests and all and came back normal perfectly healthy and that the miagranes are a circulatory and nerve issue. This is too much for me right now and it scares me does anyone else go through this? I'm on a calcium channel blocker and ibuprophen.
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I am 18, when I was 15 I began to suffer from disabling basilar artery miagranes that mimicked strokes. I get aches, weakness/paralysis, intense aura, vision issues, vertigo, shakiness, and balance disturbances. I dropped out of school because I could not function. I've had diagnostic testing- ct scans, MRI and the strobe light/ seizure tests and all and came back normal perfectly healthy and that the miagranes are a circulatory and nerve issue. This is too much for me right now and it scares me does anyone else go through this? I'm on a calcium channel blocker and ibuprophen.
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875426_tn?1325532016
I don't have the same kind of migraines, but though I have only common migraines, not as bad as yours with all the symptoms you have, I am on disability partly for my chronic migraines.  It must be very scary for you right now.  Do you know the Lord?  I find He helps me over and over when I get migraines.

  Web MD recommends with your kind of migraine that going to a migraine specialist is ideal- do you have one?  

You need to consult your doctor about what you are taking, because while the calcium channel blocker is supposed to be lowering your blood pressure, presumedly because your blood pressure is high?, the ibuprofen can raise your blood pressure, which may be counteracting the blood pressure medication you are taking.

Also, I had my first migraine at 11, but got more after I began menstruating with the hormonal fluctuations, which can be a big trigger in migraine sufferers- do you find that true of you?

  Much later in life, I learned that iron deficiency can cause headache and is common in the menstruating female, so if your doctor has not checked your ferritin (iron stores), blood iron and iron saturation level lately, ask if you can get those checked.
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