Who gets (cluster) migraines?

[Fast.F10]

Going back to the late 80's, I was out with my family and I got my first cluster migraine. I thought I was having a heart attack or about to die...never knew of migraines. My symptoms (but not always) start with fingers going numb, then vision is affected with auroras, and then things do not make sense. What I mean, if I read a sign for example that shows Florida...it doesnt equate in my brain as Florida. Over the years, I have tried to log my food/liquid intake, tried many different drugs to prevent and also maintain them when they occur. Most either did nothing or made me throw up; not a pleasant thing to occur when you have a migraine. No my protocol when I feel one coming on: At work, inform my supervisor, lock my office doors, turn off the lights, close the blinds, put phone on DND, and lay on the ground with my pillows/blanket to try to fall asleep. If I catch it early, I head home if I feel I can make it safe; 30min drive...end results, my day is shot and am worthless to do much until the next day. If at home, now since I am a legal card holder, I slam a few cups of coffee, take a few vape puffs, and lay down to fall asleep. Most of the time (knock on wood), within a few hours I can function; head still hurts...but can manage. So for my medical card..I am thankful. My REAL worry is if I am ever by myself out somewhere and I get one. I have flown a few times to other states by myself and this is always in the back of my head lingering if I am going to get one. Most doctors say its my eating habits while others say it stress. Honestly I dont buy either theory. As my eating habits are no where near the same as to when I was in middle school. Nor while on vacation am I stressed. Wish I could figure out my trigger. My mother/father/brother have never gotten a migraine and I just pray that my son never gets one and/or has them like I do.

• Do you get migraines?
• How do you deal with them?
• What is your trigger?
• How long have you been having them?

[Sara]

Have you tried Botox?

[RugbyBro]

See a neurologist/headache specialist - they will be much more helpful than a GP. Everyone’s triggers are different, but I would suggest getting on something as a prophylactic measure and having an abortive measure handy. I’ve tried a ton of stuff but what has worked in reducing the frequency and severity of my migraines has been Nortriptyline as a prophylactic and sumatriptan as an abortive. There is also a new class of headache/migraine medicine known as CGRP inhibitors which are primarily prophylactic but are also starting to come in an abortive form. These have shown great efficacy and are specifically designed from the ground up to treat headache/migraine. They’re new and pricy since insurance doesn’t want to cover them quite readily, so seeing a neurologist will be advisable as they will figure out the fastest way for you to fulfill insurance requirements for these CGRP inhibitors.

[Fast.F10]

Originally Posted by Sara504

Have you tried Botox?

Short answer No. Long answer: Rather not another monthly injection (already getting one for the below hives issue) or add another med into my system. About 2yrs ago, while on prednisone to fight some hives I had just started to get, my body said no more and everything started to swell up. Ever see Goonies...well not "that" bad..but it was bad! But did have to goto the local fire department to get my wedding ring and another ring cut off. I told my doctor I was having all the side effects of prednisone after being on it for about 2 weeks and rather than tapper down, he suggested I add 1 more pill (forgot mg amount) to my daily. Well, long start short, I went to urgent care that night as I started to have breathing issues and the oncall said to stop taking it ASAP...which is what I suggested to my PCP. Surprise surprise...the very next day...no swelling but hives remained to this date. Wife (higher up at business part of hospital) had a nice conversation with his supervisor and my entire jacket was reviewed; received a letter from that group apologizing lack of patient care and carelessness of my events...in not so many words for legal reasons apparently) . Needless to say, I now have a different PCP. Old PCP was an ass and never listen to what I was saying or what my body was showing...just rush me in/out to get more co-pay. I also had to go around him to get my medical card since he didnt think my migraines warranted it. I did (me being me), contact him and informed him that is DOES help. Always wanted to "try the latest" meds to help with migraines.......I see that as him getting kick backs from the pill farms.

[Sara]

Originally Posted by Fast.F10

Short answer No. Long answer: Rather not another monthly injection (already getting one for the below hives issue) or add another med into my system. About 2yrs ago, while on prednisone to fight some hives I had just started to get, my body said no more and everything started to swell up. Ever see Goonies...well not "that" bad..but it was bad! But did have to goto the local fire department to get my wedding ring and another ring cut off. I told my doctor I was having all the side effects of prednisone after being on it for about 2 weeks and rather than tapper down, he suggested I add 1 more pill (forgot mg amount) to my daily. Well, long start short, I went to urgent care that night as I started to have breathing issues and the oncall said to stop taking it ASAP...which is what I suggested to my PCP. Surprise surprise...the very next day...no swelling but hives remained to this date. Wife (higher up at business part of hospital) had a nice conversation with his supervisor and my entire jacket was reviewed; received a letter from that group apologizing lack of patient care and carelessness of my events...in not so many words for legal reasons apparently) . Needless to say, I now have a different PCP. Old PCP was an ass and never listen to what I was saying or what my body was showing...just rush me in/out to get more co-pay. I also had to go around him to get my medical card since he didnt think my migraines warranted it. I did (me being me), contact him and informed him that is DOES help. Always wanted to "try the latest" meds to help with migraines.......I see that as him getting kick backs from the pill farms.

Botox isn’t monthly. It’s once every 4-5 months. So only 2-3 times a year. It’s incredible. I use it for my appearance but people who have migraines say it eliminates them. May be worth trying it one time just to see what it does for you. It’s not a medicine. It’s a toxin but it has so many advantages. It paralyzes the muscle and the relief is instant. Botox prevents the pain signals from activating in your brain (from a headache) now if you slice your hand open, you’re going to feel pain from that.

[fiveohwblow]

Sure do! Exact same symptoms except when it’s a real good one, I also have “lost my lunch” for the lack of a better descriptor, usually onset from excruciating pain. I believe this is why my tolerance is so high for pain.

That said, I’ve noticed less stress, high water intake and fasting have reduced them to nearly non existent.

I’ve heard the Botox jam mentioned before but I just don’t see myself doing it. When I was younger I would get a migraine a week, now, I don’t see them but 1-2 times a year.

[anyland]

I get migraines about once every couple weeks. I have not tried botox either. I use Cambia which seems to be the only thing that helps. It doesnt stop it, but it makes it better.

[fiveohwblow]

Originally Posted by anyland

I get migraines about once every couple weeks. I have not tried botox either. I use Cambia which seems to be the only thing that helps. It doesnt stop it, but it makes it better.

I’ve done food restrictions, allergy testing and prescription meds. Best I found when I took them was immitrex (sp) shots I would just stab the back of my arm and move on. Pills just “came up”

[anyland]

Originally Posted by fiveohwblow

I’ve done food restrictions, allergy testing and prescription meds. Best I found when I took them was immitrex (sp) shots I would just stab the back of my arm and move on. Pills just “came up”

eef.. that's too bad. I get so nauseous when I have a migraine. I ended up seeing a specialist neurologist as my GP wanted to rule out anything serious going on. Turns out I do get migraines. I spent the last 15 years pretending they were just really bad headaches. After speaking with him last April, I have changed my whole outlook on migraines. They are real, I do get them and they are the WORST! Had one on Saturday actually. bleh.

[fiveohwblow]

Originally Posted by anyland

eef.. that's too bad. I get so nauseous when I have a migraine. I ended up seeing a specialist neurologist as my GP wanted to rule out anything serious going on. Turns out I do get migraines. I spent the last 15 years pretending they were just really bad headaches. After speaking with him last April, I have changed my whole outlook on migraines. They are real, I do get them and they are the WORST! Had one on Saturday actually. bleh.

Super bummer man. I truly wish we knew without a doubt the true causes and could work to eradicate. I don’t think we’re anywhere near that.

[Fast.F10]

I can go months without getting them or in worst cases...about 10 a month. Last week I had 3; 1 at work and 2 at home. I wonder why my PCP has not suggested botox.

[Sara]

Originally Posted by Fast.F10

I can go months without getting them or in worst cases...about 10 a month. Last week I had 3; 1 at work and 2 at home. I wonder why my PCP has not suggested botox.

Do your research on it and contact a plastic surgeon about it. PCP may not have much knowledge as that’s not their specialty. A plastic surgeon would know much more about it than what you’ll find on Google or what your PCP can provide.

Thanks to this thread I am now poorer as I made a last minute lunch time appointment and just had my Botox done an hour ago lol. So your suffering has made me more beautiful and poorer

[anyland]

awwww... fingers crossed it works for you! I know where mine are coming from.. accident years ago where I was t-boned.. whiplash.. which I NEVER believed in until I went through all this.

[RugbyBro]

Originally Posted by fiveohwblow

Super bummer man. I truly wish we knew without a doubt the true causes and could work to eradicate. I don’t think we’re anywhere near that.

I think we are getting close! CGRP has an integral part in the mechanism of migraine/headache - it's the reason why these new CGRP inhibitors are so effective (some triptans also work in part because they stop the release of this protein). I'm pretty curious to try them actually. It's exciting because AFAIK, these CGRP inhibitors are really the first class of medications specifically designed to treat headache/migraine rather than it being a convenient side effect of the medication.

[fiveohwblow]

Originally Posted by RugbyBro

I think we are getting close! CGRP has an integral part in the mechanism of migraine/headache - it's the reason why these new CGRP inhibitors are so effective (some triptans also work in part because they stop the release of this protein). I'm pretty curious to try them actually. It's exciting because AFAIK, these CGRP inhibitors are really the first class of medications specifically designed to treat headache/migraine rather than it being a convenient side effect of the medication.

Yes!! If you try let me know as I’ve been following them loosely and don’t know anyone who’s taking them.

[RugbyBro]

Originally Posted by Fast.F10

I can go months without getting them or in worst cases...about 10 a month. Last week I had 3; 1 at work and 2 at home. I wonder why my PCP has not suggested botox.

YMMV but my PCP/GP was utterly useless at 1. diagnosing my chronic headache and migraine condition, and 2. prescribing an effective treatment. I put off seeing a neurologist for so long because I thought it would just get better and I wouldn't need to. In fact, the neuro was the best decision I made in my headache/migraine journey. As context, my headache/migraine disorder was induced by repetitive trauma... you can probably figure out by my username as to how

[RugbyBro]

Originally Posted by fiveohwblow

Yes!! If you try let me know as I’ve been following them loosely and don’t know anyone who’s taking them.

Yeah I've been thinking more and more about it. The hold up for me is that even though I've tried around 7 treatments before landing on a combo that works for me, not all of them counted for insurance coverage purposes. So I am technically 1 prophylactic treatment and 2 abortive treatments away from my insurance covering it. I've even floated the idea to just paying out of pocket to try Nurtec (Rimegepant) which is an abortive to see how I would react with it but was told it is like $800 for a fill. We'll see though, I'll keep pushing this year to see if I can get my hands on something CGRP inhibitor related.

[Fast.F10]

Originally Posted by anyland

awwww... fingers crossed it works for you! I know where mine are coming from.. accident years ago where I was t-boned.. whiplash.. which I NEVER believed in until I went through all this.

I myself also got t-boned (truck driver didnt stop at a stop sign...no ticket was given to him, but I did snap his back axle, but my car was totaled), but this was about 15years ago...long after first migraine. Thinking back, I never had an major or even minor tramas to my body...short of being an active kid.

Originally Posted by Sara504

Do your research on it and contact a plastic surgeon about it. PCP may not have much knowledge as that’s not their specialty. A plastic surgeon would know much more about it than what you’ll find on Google or what your PCP can provide.

Thanks to this thread I am now poorer as I made a last minute lunch time appointment and just had my Botox done an hour ago lol. So your suffering has made me more beautiful and poorer

I want to see a before/after botox pic of you...if you care to share. How much do the injections set you back? I know that my monthly injection is around $800, which I was able to get approved for there financial plan. To be honest, I do not see how I qualify based on my salary or house hold income....but I am thankful nonetheless.

[rebekahb]

If you haven't seen a neurologist/migraine specialist, I would do that first. You have some great PCP's out there but can be limited in their knowledge. Physicians specialize for a reason so I would find one that does so if for nothing else, a second opinion.

As far as Botox, depending on whether or not you meet the criteria it could possibly be covered by your insurance. This again would be something I would discuss once I found a neurologist/migraine specialist.

I had horrid migraines for years (at one point up to 15/mth). At around 30, I was on Topamax (had tried a few other meds before this) and 2 other meds. I said this is ridiculous. By process of medication elimination, I figured out it was birth control and quit taking that. I am still prone to migraines & don't ever get plain headaches. Certain smells and foods can trigger them for me. I don't get them as often but after so many years I know what to do to help them until it subsides. I still get that horrible feeling after one passes of a dull ache and feeling drained and nauseous like any little thing will re-trigger one.

[Fast.F10]

Originally Posted by rebekahb

If you haven't seen a neurologist/migraine specialist, I would do that first. You have some great PCP's out there but can be limited in their knowledge. Physicians specialize for a reason so I would find one that does so if for nothing else, a second opinion.

As far as Botox, depending on whether or not you meet the criteria it could possibly be covered by your insurance. This again would be something I would discuss once I found a neurologist/migraine specialist.

I had horrid migraines for years (at one point up to 15/mth). At around 30, I was on Topamax (had tried a few other meds before this) and 2 other meds. I said this is ridiculous. By process of medication elimination, I figured out it was birth control and quit taking that. I am still prone to migraines & don't ever get plain headaches. Certain smells and foods can trigger them for me. I don't get them as often but after so many years I know what to do to help them until it subsides. I still get that horrible feeling after one passes of a dull ache and feeling drained and nauseous like any little thing will re-trigger one.

My last PCP was sooo bad: I'm an active person by nature and play mostly any sports. My knee kept getting "tweaked" and would hurt for a good few weeks. Good old PCP would also just give me pain pills and call it a day. It wasnt until the last injury where I went up for a rebound (with no one around me) and came down wrong. Went the next day and demanded an MRI vs what he tried to push...more pain pills. Needless to say, I had an appointment 1 day after the MRI came back with an orthopedic surgeon. I had a torn ACL/MCL and had surgery within a few days. I actually enjoyed rehab...as I went into it, if I didnt leave in tears...I didnt work hard enough and if I had issues later in life...it was my own fault. Hell, I would turn up the electric stimulator machine when the rehab staff would walk away. This new PCP, I havent really touched on my migraines much as I've kinda lost faith in health care workers. But I think seeing a neurologist should be my next step...and also suggested by my PCP to be honest based on my long history. Sorry, post went alittle wide LOL.

Thanks all for the posts in this thread!

[Sara]

Originally Posted by Fast.F10

I myself also got t-boned (truck driver didnt stop at a stop sign...no ticket was given to him, but I did snap his back axle, but my car was totaled), but this was about 15years ago...long after first migraine. Thinking back, I never had an major or even minor tramas to my body...short of being an active kid.

I want to see a before/after botox pic of you...if you care to share. How much do the injections set you back? I know that my monthly injection is around $800, which I was able to get approved for there financial plan. To be honest, I do not see how I qualify based on my salary or house hold income....but I am thankful nonetheless.

Don’t have any before pics. But you can imagine what “crinkles” look like. Botox depends on where you live and whether you have it administered by a doctor or a nurse. Yesterday I paid $200 for 20 units and had it done by the nurse. The doctor charges $14 a unit, so I saved $80 by having the nurse do it and it looks great.

No offense to any nurses whatsoever, but if you don’t tolerate needles well, have the doctor administer it. It hurt significantly more when the nurse did it to me yesterday. First time I’ve ever teared up. Every other time my friend who’s a plastic surgeon has done it and it never hurt when he injected me. But a needle is a needle and it’s over in less than a minute and the pain ceases immediately.

Like I stated before it’s more like semi annual for me rather than monthly. It lasts A LOT longer than just a month.