If you have chronic migraine (or any migraine), do you or do you think you could work a typical job?

[pitterpatter]

As I've posted before, DH and I will be divorcing within a couple of years. About the time DD heads to college. I'm truly starting to stress about whether I'm going to be able to hold a typical job to support myself (and help pay for DD's college). I have chronic migraine, which means I have a minimum of fifteen migraine days a month. I am taking Nurtec every other day (the max dose), which is/was a game changer for me. However, I am back to having symptoms nearly every day. Things are way better than they used to be, but I am not feeling/functioning normally.

Right now with the heat, I pop an aura just about every time I leave the house. Driving and going into stores can trigger one. (It can be pretty scary driving with one.) Even when I recover quickly, my vision and cognitive abilities aren't great for 2-3+ hours. (I probably need to time it.) And, a lot of days when I'm just home, I have to lie down for a bit in the afternoons. My brain gets too fuzzy to do much of anything and/or fatigue sets in.

I looked up types of jobs that are good for migraine sufferers, and it's pretty much freelance, remote, and gig work. I have a TPT store, so that's pretty much what I already do, but these types of jobs aren't going to provide stable income or insurance. And, our state sucks in providing quality affordable health insurance options for the self employed. I'm trying to think realistically about my future before it's right on top of me.

Any wisdom, thoughts, advice to share?

[Indigo Blue]

I have no advice for jobs. (Also, I do have other issues that could keep me from working outside the home). 
 

So, these are just some thoughts in case these could help. 
 

I have lots of bad headaches, but not chronic like yours. I did discover that having 0 percent chocolate or caffeine keeps me almost headache free. That includes decaf anything. Zero, as in absolutely NO caffeine. 
 

What about the muscles in your back that run from the base of the skull  to the top of the spine? Massage gun or regular massage for those. Those muscles can cause migraine if not stretched and massaged. 
 

Yoga. Specifically for the paraspinal muscles/migraine. There are most likely routines for this. 
 

I have Fibromuscular dysplasia which is known to cause migraines. Maybe a carotid ultrasound wouldn’t hurt…to make sure those are healthy and clear…and to rule this out. Since your migraines are chronic, this might be a good idea in general, if you have not already done so. You will need a person knowledgeable about FMD ultrasound to do this type of ultrasound. Anyone who tells you otherwise is wrong. The carotids need to be checked way up high….higher than what they do for the normal ultrasound when checking for general plaque blockage. I’m just saying, since yours are chronic, an ultrasound might be good to rule things out, and I’d want the whole artery checked, since you aren’t only just checking for plaque. You want to make sure the entire artery is healthy, or as much of it as possible.  
 

Just a few thoughts. 

[TheReader]

I find when I have mine, though not at all chronic, I *can* push through and do things if I must, but it's not ideal.  I cannot imagine, though, trying to go to a job with migraine symptoms, if it were all the time. 

Is it likely/possible your symptoms may subside some when the divorce happens & the stress of staying married is off? Or maybe/probably not? 

Would something like personal shopper (like the grocery shopper person), or similar work? Are there library jobs you would qualify for, &/or things you could do to qualify for one?  substitute teacher...? although I think if you turn down requests a lot, you'd get called less.....

Are there different medicines you can try? 

Can you & your spouse work out alimony/spousal support/college support for your DD so that it's less of a financial strain on you? 

I'm just throwing out ideas....you don't need to answer any of it, just thinking out loud. 

[wintermom]

Can you get a doctor to write a convincing enough letter so that you can go on full or partial disability? Not sure what that might mean in practical terms for working, but having official documentation may be useful in divorce court as far as compensation your ex must provide you.

[pitterpatter]

I had a full work up with various MRIs, scans, X-rays, bloodwork, etc. before I was diagnosed, but I may need to find another neurologist (mine left during Covid) and see what else I can do. Thank you for posting. 😊

I have been thinking DD and I might enjoy yoga.

9 minutes ago, Indigo Blue said:

I have no advice for jobs. (Also, I do have other issues that could keep me from working outside the home). 

So, these are just some thoughts in case these could help. 

I have lots of bad headaches, but not chronic like yours. I did discover that having 0 percent chocolate or caffeine keeps me almost headache free. That includes decaf anything. Zero, as in absolutely NO caffeine. 

What about the muscles in your back that run from the base of the skull  to the top of the spine? Massage gun or regular massage for those. Those muscles can cause migraine if not stretched and massaged. 

Yoga. Specifically for the paraspinal muscles/migraine. There are most likely routines for this. 

I have Fibromuscular dysplasia which is known to cause migraines. Maybe a carotid ultrasound wouldn’t hurt…to make sure those are healthy and clear…and to rule this out. Since your migraines are chronic, this might be a good idea in general, if you have not already done so. You will need a person knowledgeable about FMD ultrasound to do this type of ultrasound. Anyone who tells you otherwise is wrong. The carotids need to be checked way up high….higher than what they do for the normal ultrasound when checking for general plaque blockage. I’m just saying, since yours are chronic, an ultrasound might be good to rule things out, and I’d want the whole artery checked, since you aren’t only just checking for plaque. You want to make sure the entire artery is healthy, or as much of it as possible.  

Just a few thoughts. 

 

[Katy]

Migraines yes, chronic cluster headaches no. But that doesn’t mean it’s not disabling for you, it simply means my pain tolerance makes them not as severe for me. Sometimes aura is worse than pain. 

[pitterpatter]

I'm not sure. I've thought about this, as having the cheap insurance alone would reduce a lot of stress but then I would still want to work as much as possible online when I'm able, and they might kick me off for making too much.

I think they would also make me jump through a lot of hoops in terms of trying a bunch of cheap off-label medicines first, which just zonk me out in a different way (and what I have tried hasn't worked). I'm also afraid of losing Nurtec, if I try something else. Our insurance doesn't cover it, so Nurtec is currently giving it to me free. (It's a minimum of $2,000 for my dose per month otherwise.)

26 minutes ago, wintermom said:

Can you get a doctor to write a convincing enough letter so that you can go on full or partial disability? Not sure what that might mean in practical terms for working, but having official documentation may be useful in divorce court as far as compensation your ex must provide you.

Edited July 10, 2023 by pitterpatter

[Indigo Blue]

12 minutes ago, pitterpatter said:

I had a full work up with various MRIs, scans, X-rays, bloodwork, etc. before I was diagnosed, but I may need to find another neurologist (mine left during Covid) and see what else I can do. Thank you for posting. 😊

I have been thinking DD and I might enjoy yoga.

23 minutes ago, Indigo Blue said:

Hey, do you have FMD? Is that what you meant?

[pitterpatter]

Most of my migraines are silent (no crushing head pain), although this is changing some. I have a lot of head pressure and wooziness, but I wouldn't call it PAIN. It's all the other stuff that makes me unable to function...the cognitive fog, dizziness (sometimes vertigo), nausea, inability for form sentences and speak correctly, balance and coordination issues. I am a perfectionist and have a strong work ethic. I can imagine that I would attempt to power through and be miserable. But honestly, I think I could cause an accident or make a mistake that would get me fired pretty easily. That would devastate me. I was thinking about going to back to school for some kind of health-related career, but I'm not sure that's going to work out. 😞

ETA: I often describe it like feeling pretty darn drunk without any euphoria. So, there's also a kind of down, depressive feeling that can run along with all the symptoms too. Every now and again, when symptoms are especially bad, I will drink something to flip the dysphoria.

24 minutes ago, Katy said:

Migraines yes, chronic cluster headaches no. But that doesn’t mean it’s not disabling for you, it simply means my pain tolerance makes them not as severe for me. Sometimes aura is worse than pain. 

Edited July 10, 2023 by pitterpatter

[pitterpatter]

No, I don't. I just meant I've been through a bunch of tests of various sorts to rule out other things. That's how I ended up with a chronic migraine diagnosis.

9 minutes ago, Indigo Blue said:

Hey, do you have FMD? Is that what you meant?

 

[Indigo Blue]

2 minutes ago, pitterpatter said:

No, I don't. I just meant I've been through a bunch of tests of various sorts to rule out other things. That's how I ended up with a chronic migraine diagnosis.

 

Thanks. I thought for a minute I had found someone else who had that. 

[pitterpatter]

No, I'm sorry. I once found a person on a different form whose husband had the same rare disease as mine. I totally freaked her out trying to talk about it. (Prognosis wasn't that promising then.) She literally told me I couldn't talk to her anymore. This was in the early stages of my DH's diagnosis, so I was initially thrilled to make this connection. Anyway, I'm just trying to say I get it.

3 minutes ago, Indigo Blue said:

Thanks. I thought for a minute I had found someone else who had that. 

[Indigo Blue]

14 minutes ago, pitterpatter said:

No, I'm sorry. I once found a person on a different form whose husband had the same rare disease as mine. I totally freaked her out trying to talk about it. (Prognosis wasn't that promising then.) She literally told me I couldn't talk to her anymore. This was in the early stages of my DH's diagnosis, so I was initially thrilled to make this connection. Anyway, I'm just trying to say I get it.

Thanks. I don’t know anyone IRL with that. Fortunately, I’m doing well with mine. A lot of times, people fare much worse. 

[Heartstrings]

56 minutes ago, wintermom said:

Can you get a doctor to write a convincing enough letter so that you can go on full or partial disability? Not sure what that might mean in practical terms for working, but having official documentation may be useful in divorce court as far as compensation your ex must provide you.

If she’s been staying home with kids it’s likely that she doesn’t have enough “credits” to get SS.  The system is set up crappy, as is our way.  

[pitterpatter]

No, I do. I checked the other day. I worked before having DD. And, I also have been making enough with TPT these past several years, that that topped me off. The monthly dollar amount that I would qualify for isn't great, though. I just wish we had some kind of truly affordable health insurance available for the self employed. Not having this locks a lot of people (a whole lot of women, I imagine) into some not-so-great circumstances.

1 minute ago, Heartstrings said:

If she’s been staying home with kids it’s likely that she doesn’t have enough “credits” to get SS.  The system is set up crappy, as is our way.  

[pinball]

54 minutes ago, pitterpatter said:

No, I do. I checked the other day. I worked before having DD. And, I also have been making enough with TPT these past several years, that that topped me off. The monthly dollar amount that I would qualify for isn't great, though. I just wish we had some kind of truly affordable health insurance available for the self employed. Not having this locks a lot of people (a whole lot of women, I imagine) into some not-so-great circumstances.

There are 2 different types of disability…SSI and SSDI. 

SSDI is based on work credits but SSI isn’t.

Also, there is not  a migraine listing in the “ blue book “ for disability evaluation as an impairment so you’d need to qualify by having migraines due to another listing (like epilepsy) or get a medical vocational allowance, which involves evaluating what kind of work you can do.

there are probably other things I’m leaving out but my best suggestion is contact a disability lawyer ASAP and start making a log/ documenting your migraines. 

[KSera]

1 hour ago, pitterpatter said:

No, I do. I checked the other day. I worked before having DD. And, I also have been making enough with TPT these past several years, that that topped me off. The monthly dollar amount that I would qualify for isn't great, though. I just wish we had some kind of truly affordable health insurance available for the self employed. Not having this locks a lot of people (a whole lot of women, I imagine) into some not-so-great circumstances.

Yes, I fear you might have a hard time getting enough benefits to get you by, unfortunately. Between having a little income with TPT, which would decrease your eligibility, and how low payments are, it might not be sufficient depending on the COL where you are. Where we live, it's not even close to allowing a disabled person to support themselves on SSI alone. You also need to pretty much use up all your assets first or get them into some kind of trust first, otherwise those would disqualify you (not house or car, but money).

[pitterpatter]

Yes, and I don't actually want to be on disability. The low-assets thing is a hard no. The only part I really wish that I had access to was the health insurance. That would at least allow me to attempt to get by for a while on side hustles/gig work coupled with maybe some part-time work, if need be. Morning hours tend to be decent for me. When I'm home anyway. I don't know whether driving every morning would cause auras and ruin my morning hours too or not. I don't drive often enough in the mornings to know. Going into our local Walmart causes one almost every time (even in the morning). I thought it was just our local Walmart for some reason but now other stores are starting to cause auras too.

12 minutes ago, KSera said:

Yes, I fear you might have a hard time getting enough benefits to get you by, unfortunately. Between having a little income with TPT, which would decrease your eligibility, and how low payments are, it might not be sufficient depending on the COL where you are. Where we live, it's not even close to allowing a disabled person to support themselves on SSI alone. You also need to pretty much use up all your assets first or get them into some kind of trust first, otherwise those would disqualify you (not house or car, but money).

[J-rap]

...

Edited September 23, 2023 by J-rap

[Faith-manor]

I don't have a lot of advice. But, if heat is a trigger, given climate change, it might be good if your daughter looked at colleges in the north. Yes, you deal with winter. However, that might be better for your health. Michigan, Wisconsin, Minnesota. Central Michigan University is fairly reasonable tuition for out of state students. She would not be eligible for in-state until you have resided in state for a couple years. These states are very good for folks who cannot handle heat, and of course, the farther north you go, the less heat. CMU has a medical school, and some pretty good profs/doctors.

Just a thought. I am not sure where you are now.

[TexasProud]

Yeah, my husband probably always had them, but his head bleed aggravated so that now his head hurts 24/7 pretty much.  He was doing pretty well for a little bit, but any kind of stress totally does him in.  He could not work full time in his profession anymore.  Even mission work has to be done with a "reasonable" schedule.  He cannot take call very often as lack of sleep makes it worse. 

[pinball]

45 minutes ago, pitterpatter said:

Going into our local Walmart causes one almost every time

It could be the lighting…if it flickers at all.

[pitterpatter]

I don't know how your DH did it either. I sometimes get to the point where I can pretty much only sit and stare into space. That's when I usually head to bed. Do you know how your daughter's remote work works?

I did read that about the autoimmune theory.

31 minutes ago, J-rap said:

I'm sorry for anyone having chronic migraines.  😟   Those run in my family.  My dh had a migraine every day of his life starting around age 35.  (Before then, he still had them often, but not daily.)  He made many changes in his life and for the most part was able to take the edge off the symptoms and continue doing what he loved.  He had a demanding full-time job.  (I really don't know how he did it!  But I know he'd rather be busy and suffering than sitting at home suffering, if possible.)  He adhered to a strict diet and was on a calcium channel blocker which helped a bit.  He probably still needed to take a day or two off work on average every month, but he was able to keep working for a number of years.

My dd began having chronic, daily migraines starting at age 16.  She ended up deferring college because of it, and in the end, never went back to school.  However, she's working full-time in the financial tech industry, remotely.  I think remote work helps a lot.  She also adheres to a very strict diet and lifestyle to take the edge off of them. 

A couple of doctors in the past couple of years have told me that some doctors/scientists are beginning to think of chronic migraines as a type of autoimmune condition.  I thought that was interesting.  

 

[pitterpatter]

That's what I was thinking. I did try walking in with my head down once. I started to get an aura but it poofed away after a few seconds. However, another day I ran into someone I knew in the Walmart parking lot and got one talking to her outside the store. 🤷‍♀️

7 minutes ago, pinball said:

It could be the lighting…if it flickers at all.

[Farrar]

Mine have improved dramatically in the last year or so just because of hormonal changes. Do you think that you'll have any relief coming down the pipeline from menopause or are your triggers completely different?

I can push through when I have to so for me, even if it was a few years ago when I was having them back to back to back, I was okay to function as long as I was able to have breaks. It just depends on the severity. When I push through, they can turn really ugly if I do it for too long. But I'm also not having them like I used to, so I've got a really different context. 

[keirin]

I have migraines but fortunately not often (usually quarterly, 4x a year) unless I'm pregnant and then I get them 2-3x a week. It made working while pregnant very difficult. This suggests to me that it's likely hormonal for me, though I find myself getting migraines due to stress situations, heat, and also more often when at work due to florescent lights.

When I was pregnant and had to work, I tried to keep the air down (stay cool), used cooling towels on the back of the neck, drank lots of water, and kept florescent lights off while taking frequent computer screen breaks and used blue light filtering glasses. These helped, but of course didn't totally fix the issue.

I have a friend who swore by acupuncture for her migraines but I have never tried it.

I wish I had job advice for you. I had a coworker with many more migraine days than I did, but we worked at a Catholic organization that was just willing to give her flexible time to work around migraine days. Perhaps there is a good non profit organization that would be willing to flex time for you? I wish I had better answers. Prayers.

Edited July 10, 2023 by keirin

[kbutton]

2 hours ago, J-rap said:

A couple of doctors in the past couple of years have told me that some doctors/scientists are beginning to think of chronic migraines as a type of autoimmune condition.  I thought that was interesting.  

Some autoimmune conditions predispose you to migraines, such as antiphospholipid syndrome. I have a couple of family members with APS, and one had migraines until going on warfarin. Quite a few people with migraines who go on blood thinners find that their migraines subside, with or without an APS diagnosis.

Migraines are very weird!

[pitterpatter]

I'm not sure. I'm mid forties. Things have been getting progressively worse in that department these past couple of years. (Back to heavy flow and super painful cramps. Like high school for me. Ugh.) I keep wondering the same thing. Will the migraines break when I hit menopause. I don't know that that time will come soon enough, though.

I always push through until I can't anymore. When I get to that can't-anymore point, the only thing that resets is sleep. Unfortunately, a short nap doesn't typically do it. Usually it takes several hours.

1 hour ago, Farrar said:

Mine have improved dramatically in the last year or so just because of hormonal changes. Do you think that you'll have any relief coming down the pipeline from menopause or are your triggers completely different?

I can push through when I have to so for me, even if it was a few years ago when I was having them back to back to back, I was okay to function as long as I was able to have breaks. It just depends on the severity. When I push through, they can turn really ugly if I do it for too long. But I'm also not having them like I used to, so I've got a really different context. 

[Farrar]

11 minutes ago, pitterpatter said:

I'm not sure. I'm mid forties. Things have been getting progressively worse in that department these past couple of years. (Back to heavy flow and super painful cramps. Like high school for me. Ugh.) I keep wondering the same thing. Will the migraines break when I hit menopause. I don't know that that time will come soon enough, though.

I always push through until I can't anymore. When I get to that can't-anymore point, the only thing that resets is sleep. Unfortunately, a short nap doesn't typically do it. Usually it takes several hours.

So, I have no idea how it is for you. There are lots of different migraine types and ways people get them. But for me, mine got steadily worse beginning in my mid-30's so that by my early 40's, I was miserable and they were back to back to back. Now, as I'm getting further into peri-menopause and closer to the end, they've dropped of significantly. Like, miraculously significantly. Apparently this is not an uncommon progression arc if your migraines are triggered by your dropping hormone levels. So just something to consider.

[lmrich]

I have about 6 - 8 migraine days every month. I teach part-time at a hybrid school. I can push through the bad times since I know I will be home in a few hours.  I work all summer long so I  can cruise through the year; I create every Powerpoint, every quiz, test, video, etc.. I also tutor a lot online or in my homee. 

I cannot go into Walmart or any store that has flickering  lights. My students also know that the overhead  lights are never turned  on  in my room; I have enough natural daylight and bring Christmas light to put on their tables. 

 

What are your skills? You mentioned TPT sales. Are you a teacher or more of a graphic designer? 

 

Edited July 10, 2023 by lmrich
clarity

[J-rap]

7 hours ago, pitterpatter said:

I don't know how your DH did it either. I sometimes get to the point where I can pretty much only sit and stare into space. That's when I usually head to bed. Do you know how your daughter's remote work works?

I did read that about the autoimmune theory.

 

Well, she has some flexibility with her schedule.  If she has a bad day or needs to cut out early, they trust her and it doesn't affect her pay or evaluations.

[J-rap]

On 7/10/2023 at 5:16 PM, kbutton said:

Some autoimmune conditions predispose you to migraines, such as antiphospholipid syndrome. I have a couple of family members with APS, and one had migraines until going on warfarin. Quite a few people with migraines who go on blood thinners find that their migraines subside, with or without an APS diagnosis.

Migraines are very weird!

...

Edited September 23, 2023 by J-rap

[pitterpatter]

Gosh, I hope so! I'm pinning my hopes on it. It's been a really bad five years now. (Minus the 6 miracle months I had when I first started Nurtec.)

15 hours ago, Farrar said:

So, I have no idea how it is for you. There are lots of different migraine types and ways people get them. But for me, mine got steadily worse beginning in my mid-30's so that by my early 40's, I was miserable and they were back to back to back. Now, as I'm getting further into peri-menopause and closer to the end, they've dropped of significantly. Like, miraculously significantly. Apparently this is not an uncommon progression arc if your migraines are triggered by your dropping hormone levels. So just something to consider.

[Farrar]

4 minutes ago, pitterpatter said:

Gosh, I hope so! I'm pinning my hopes on it. It's been a really bad five years now. (Minus the 6 miracle months I had when I first started Nurtec.)

I really hope so. I don't want to give you false hope. But also, one of the things I noted about my migraines was that as they got worse, they got worse. By which I mean, the worse they got, the less hope I had that they would ever get better and the more stressed I got about them and their progression, and that stress fed into them and made them worse. 

I know I'm really lucky that I responded pretty well to triptans. Fingers crossed that you get better as menopause progresses.

[pitterpatter]

Oh, gosh! Not a blood thinner. That causes a whole new set of problems to deal with. I was actually offered a blood thinner due to the slightly higher probably of stroke with migraine with aura. I turned it down. I agree, though, migraine is weird! I have a doctor's appointment soon. I'll discuss my options with him just to know. I hope your family members with APS are doing well.
 

16 hours ago, kbutton said:

Some autoimmune conditions predispose you to migraines, such as antiphospholipid syndrome. I have a couple of family members with APS, and one had migraines until going on warfarin. Quite a few people with migraines who go on blood thinners find that their migraines subside, with or without an APS diagnosis.

Migraines are very weird!

[kbutton]

12 hours ago, J-rap said:

Interesting.  I haven't heard of APS.  (Just looked it up.)  My dh's family definitely has some kind of predisposition to migraines, which seems to be pretty strong!   My dh was part of an extensive study at Mayo because his migraines actually evolved into something else, and they wanted to find out if he had certain known genetic disorders, but he did not.   Nearing age 60, he no longer gets the headache part, but he still has all the pre-migraine symptoms often, many which are triggered by mild changes in barometric pressure.  

Oh, interesting! As I am nearing what I hope is the end of perimenopause (been in it for about 8 or 9 years for sure), I have similar things going on--It makes it harder to know when to take meds and when to let it go. I never really noticed significant pre-migraine symptoms until recently. And a great big yes to the barometric pressure changes. 

39 minutes ago, pitterpatter said:

Oh, gosh! Not a blood thinner. That causes a whole new set of problems to deal with. I was actually offered a blood thinner due to the slightly higher probably of stroke with migraine with aura. I turned it down. I agree, though, migraine is weird! I have a doctor's appointment soon. I'll discuss my options with him just to know. I hope your family members with APS are doing well.

No one I know is being treated with blood thinners for the migraines! It's just an incidental thing that they noticed after being on them. Because one of them has APS, I follow an APS Facebook page where this phenomenon is widely discussed. 

[zimom]

I have had chronic migraines since age 16.  They have fluctuated from a best of about 2 days a month to a worse of 20+ days a month.  Across my adulthood, I would say I have about 6 a month.  I was really hoping they would go away after menopause, no such luck.   Botox has kept them to the current 4-6 a month, when I was on insurance that allowed Botox AND monthly Aimovig (similar class as Nurtec), I was around 2 a month.   

In the first years after college I was working a demanding job with 1-3 children.  I just HAD to do it, no other option.   I was regularly taking imitrex multiple days a month.  I worked for a large group of physicians that would do anything to keep me at work so 2-3 days a week they would have a nurse give me a large shot of phenergan at lunch time to knock me out and sleep off that days migraine instead of eating lunch and I would somehow get through the rest of the day.   Fortunately after about 20 years I was finally able to leave my career to focus on my youngest.

We do what we have to do, but it sure makes life easier when we can take care of ourselves too.  

 

[pitterpatter]

Well, I've been a homeschool teacher for going on something like 12 years now. 😉 But, one of my degrees is in journalism with an emphasis in magazine design. So, a mix of both of sorts, which actually makes me a pretty good candidate for TPT. I create resources for K-3 mostly with the idea being of providing things I wish I would have had for DD when she was in the early grades.
 

21 hours ago, lmrich said:

What are your skills? You mentioned TPT sales. Are you a teacher or more of a graphic designer?