Migraine doubts
March 18, 2014 6:42 AM Subscribe
About 3 years ago, my health started falling apart. 2 and half years ago I asked this question. Some of my symptoms at that time were side effects from Wellbutrin (which resolved when I stopped taking it), and the others were diagnosed as migraines. My treatment for migraines has been less than successful and I'm beginning to doubt the diagnosis, especially since the intensity of the headaches has ramped up so severely in the last couple of weeks.
List of important info:
1. I have a headache literally every day. There is no time when the pain goes below a 3 and most often it hangs out around a 5. It feels like a giant fiery hand grabbing the top of my head, forehead, eyes, and cheekbones and squeezing. It hurts least first thing in the morning and the pain increases throughout the day. When I go in to see the headache specialist and have to answer the questionnaire about how often I have headaches and how long it takes for a migraine to become full-blown, I *can't answer* because it's always there. I also get the "ice-pick" headaches at two or three specific points on my head.
2. I'm very sensitive to light all the time...it seems like my pupils don't contract enough and constantly let in too much light. During eye exams, the optometrist has commented on my "large pupils."
3. I don't experience any nausea with my headaches. The only exception to this is in the last couple of weeks where I have had a vague nausea with them, but nothing even close to vomit-level.
4. I can't identify whether I experience an aura or not. I know that an aura isn't required for a headache to be a migraine, though.
5. My headache always worsens when I sneeze or strain in any way (Valsalva, I think?) I'm mostly able to run without problem, though afterwards is sometimes rough.
6. I've gone into the ER twice for treatment for severe headache. My blood pressure both of those times had the top number much higher than normal and the bottom number much lower than normal (for instance this last time it was 150/65). After the IV treatment (Toradol, Reglan, and Benadryl, effective enough to get me back to my baseline pain level), my blood pressure reading was 100/65. My normal blood pressure is on the low side, but not that low.
7. I have failed every migraine preventive they've tried: Topamax, amitriptyline, nortriptyline, and tizanidine. They have not tried any beta-blockers, presumably due to my low-ish BP.
8. My abortive meds are naproxen, Relpax, and hydroxyzine. Naproxen sometimes tamps the pain down to a manageable level again, but I canNOT take it every time my head hurts or I wouldn't do anything else. Plus I'd probably put myself into rebound territory or medication overuse headache. Relpax is the fourth triptan I've tried (the others were Imitrex, Amerge, and Maxalt) and I've given up on trying any others because they do nothing. Hydroxyzine I take when I just want to go to sleep.
9. In the last few months I've also started getting pulsatile tinnitus, where all of a sudden my ears feel very full and all I can hear is the whooshing sound of my pulse. I feel sort of dizzy when that happens, but it passes eventually.
10. I have constant pain in my sinus areas, both the frontal and maxillary sinuses. I had sinus surgery several years ago, but a very recent CT confirmed that my sinuses are totally clear. No explanation for the continued pain.
11. As you may or may not see in my linked previous question, I had an MRI in July 2011 that showed multiple "non-specific" white-matter lesions in my frontal lobe. They attributed those to the migraines eventually, but again, I have doubts.
I'm 35, female, and in good health otherwise. I've lost 70 pounds in the last year and run 3x a week (doing Couch to 5K). I take Lamictal for what may be bipolar depression but I'm seeking a second opinion on that.
I'm posting this now partly because our insurance is changing at the end of the month and I'll be starting with an entirely new set of providers. I'm also posting partly because things have gotten so much worse in the last couple of weeks. The headaches are terrible but I have to suck it up and still go to work and take care of my kids. My eyes aren't focusing very well without great effort on my part.
My questions are: do these sound like migraines? If not, thoughts on what they could be? Is it worth having the whole thing completely re-evaluated (new MRI and everything) with the new headache person on the new insurance?
List of important info:
1. I have a headache literally every day. There is no time when the pain goes below a 3 and most often it hangs out around a 5. It feels like a giant fiery hand grabbing the top of my head, forehead, eyes, and cheekbones and squeezing. It hurts least first thing in the morning and the pain increases throughout the day. When I go in to see the headache specialist and have to answer the questionnaire about how often I have headaches and how long it takes for a migraine to become full-blown, I *can't answer* because it's always there. I also get the "ice-pick" headaches at two or three specific points on my head.
2. I'm very sensitive to light all the time...it seems like my pupils don't contract enough and constantly let in too much light. During eye exams, the optometrist has commented on my "large pupils."
3. I don't experience any nausea with my headaches. The only exception to this is in the last couple of weeks where I have had a vague nausea with them, but nothing even close to vomit-level.
4. I can't identify whether I experience an aura or not. I know that an aura isn't required for a headache to be a migraine, though.
5. My headache always worsens when I sneeze or strain in any way (Valsalva, I think?) I'm mostly able to run without problem, though afterwards is sometimes rough.
6. I've gone into the ER twice for treatment for severe headache. My blood pressure both of those times had the top number much higher than normal and the bottom number much lower than normal (for instance this last time it was 150/65). After the IV treatment (Toradol, Reglan, and Benadryl, effective enough to get me back to my baseline pain level), my blood pressure reading was 100/65. My normal blood pressure is on the low side, but not that low.
7. I have failed every migraine preventive they've tried: Topamax, amitriptyline, nortriptyline, and tizanidine. They have not tried any beta-blockers, presumably due to my low-ish BP.
8. My abortive meds are naproxen, Relpax, and hydroxyzine. Naproxen sometimes tamps the pain down to a manageable level again, but I canNOT take it every time my head hurts or I wouldn't do anything else. Plus I'd probably put myself into rebound territory or medication overuse headache. Relpax is the fourth triptan I've tried (the others were Imitrex, Amerge, and Maxalt) and I've given up on trying any others because they do nothing. Hydroxyzine I take when I just want to go to sleep.
9. In the last few months I've also started getting pulsatile tinnitus, where all of a sudden my ears feel very full and all I can hear is the whooshing sound of my pulse. I feel sort of dizzy when that happens, but it passes eventually.
10. I have constant pain in my sinus areas, both the frontal and maxillary sinuses. I had sinus surgery several years ago, but a very recent CT confirmed that my sinuses are totally clear. No explanation for the continued pain.
11. As you may or may not see in my linked previous question, I had an MRI in July 2011 that showed multiple "non-specific" white-matter lesions in my frontal lobe. They attributed those to the migraines eventually, but again, I have doubts.
I'm 35, female, and in good health otherwise. I've lost 70 pounds in the last year and run 3x a week (doing Couch to 5K). I take Lamictal for what may be bipolar depression but I'm seeking a second opinion on that.
I'm posting this now partly because our insurance is changing at the end of the month and I'll be starting with an entirely new set of providers. I'm also posting partly because things have gotten so much worse in the last couple of weeks. The headaches are terrible but I have to suck it up and still go to work and take care of my kids. My eyes aren't focusing very well without great effort on my part.
My questions are: do these sound like migraines? If not, thoughts on what they could be? Is it worth having the whole thing completely re-evaluated (new MRI and everything) with the new headache person on the new insurance?
Have you had a spinal tap at any point to measure the pressure of your cerebral fluid. I was diagnosed with idiopathic intracranial hypertension basically high pressure in my cerebral fluid of unknown cause, seven years ago. I was lucky in that I had none standard symptoms so did not get migraine headaches, instead i had ocular migraines, intense photophobia and visual disturbances, but a lot of your symptoms sound like the standard symptoms. My MIL had a generic defect that causes her problems with the fluid drainage from her brain and had terrible migrations for years before they put a shunt in.
posted by wwax at 7:23 AM on March 18, 2014 [2 favorites]
posted by wwax at 7:23 AM on March 18, 2014 [2 favorites]
I've had massive migraines all my life. I had my first headache at the age of 32. When I finally experienced the difference between a headache and a migraine, I understood how people could "work through" a headache. Headaches are like baby kisses compared to a migraine.
So I would say these are migraines - you don't have to have all of the symptoms for it to be one. I don't get aura, I get nausea and light/smell sensitivity plus ice pick pain. Mine aren't as bad as yours, since 1-2 advil always cuts the problem (when taken immediately and then sleeping). FWIW I have very low blood pressure and I still get them.
I know someone else who would get migraines as well but aura-only, no nausea and very little pain but his eyes would go kind of crooked when they happened and he was definitely more than a little spacey. So they come in all different types. (He did an MRI and they also found nothing.)
In my case I am massively sensitive to very random but specific food elements... agave... spearmint flavored chewing gum... jellybeans... bounce-brand dryer sheets... also, tight hats and cycling helmets give me migraines. And shifting weather patterns! I used to live in a chinook-prone area (gusting warm winds that bring in a change in weather) and christ almighty did I get a migraine if I walked in the wind that day. My migraines decreased as I got older (and moved away) but the food triggers are still there.
For you, I can't even begin to speculate on root cause since IANAD and there can be so many reasons, but yes try another round of specialists. As I've learned with friend's health issues, it is an art not a science. As posted above, tell them how severe and debilitating they are. Personally I might not do another MRI but just have them transfer over the data they've already gathered, although it is 3 years out of date and if things have gotten worse in the past 3 years then possibly do another. I don't think doctors really know what cause migraines (aside from the obvious). If they don't find a root cause then they will have to focus on pain management and isolating your triggers. Try going scent, dye & artificial flavoring-free for a month? Good luck.
posted by St. Peepsburg at 8:10 AM on March 18, 2014
So I would say these are migraines - you don't have to have all of the symptoms for it to be one. I don't get aura, I get nausea and light/smell sensitivity plus ice pick pain. Mine aren't as bad as yours, since 1-2 advil always cuts the problem (when taken immediately and then sleeping). FWIW I have very low blood pressure and I still get them.
I know someone else who would get migraines as well but aura-only, no nausea and very little pain but his eyes would go kind of crooked when they happened and he was definitely more than a little spacey. So they come in all different types. (He did an MRI and they also found nothing.)
In my case I am massively sensitive to very random but specific food elements... agave... spearmint flavored chewing gum... jellybeans... bounce-brand dryer sheets... also, tight hats and cycling helmets give me migraines. And shifting weather patterns! I used to live in a chinook-prone area (gusting warm winds that bring in a change in weather) and christ almighty did I get a migraine if I walked in the wind that day. My migraines decreased as I got older (and moved away) but the food triggers are still there.
For you, I can't even begin to speculate on root cause since IANAD and there can be so many reasons, but yes try another round of specialists. As I've learned with friend's health issues, it is an art not a science. As posted above, tell them how severe and debilitating they are. Personally I might not do another MRI but just have them transfer over the data they've already gathered, although it is 3 years out of date and if things have gotten worse in the past 3 years then possibly do another. I don't think doctors really know what cause migraines (aside from the obvious). If they don't find a root cause then they will have to focus on pain management and isolating your triggers. Try going scent, dye & artificial flavoring-free for a month? Good luck.
posted by St. Peepsburg at 8:10 AM on March 18, 2014
I used to suffer from headaches pretty much every day in the winter - I live in a region where the barometer rises and falls every day.
Turns out I have high blood pressure.
I cut out salt, started taking medication, and lost weight.
BTW, a couple of days after I cut ALL SALT out of my diet, my headaches vanished. I have not taken any pain medication in 5 weeks. A record.
I also cannot take pain medication because it affects my high blood pressure.
posted by KokuRyu at 8:12 AM on March 18, 2014
Turns out I have high blood pressure.
I cut out salt, started taking medication, and lost weight.
BTW, a couple of days after I cut ALL SALT out of my diet, my headaches vanished. I have not taken any pain medication in 5 weeks. A record.
I also cannot take pain medication because it affects my high blood pressure.
posted by KokuRyu at 8:12 AM on March 18, 2014
Is the doctor you're seeing the same one whom you said tends to minimize your symptoms in your previous question? If I had a nickel for every doctor who tends to dismiss physical ailments in patients who have experienced anxiety and depression, I'd... well I'd have some nickels. I think you should press your doctor and if you don't get a satisfying answer, yes, get a second opinion. These headaches sound absolutely miserable, and the fact that there was something on your MRI that is not definitively explained would not be acceptable to me.
Have you also seen a retinologist and had your eyes checked? Is it possible you have an eye condition and you need glasses and that's what's causing the headache?
do these sound like migraines?
Migraines are goddamned crazy. I get visual migraines (or, "aura") with no pain. I just can't focus my eyes and sometimes lose the ability to see in my right eye. So, in short, they certainly COULD be migraines.
If not, thoughts on what they could be?
When I first started having the visual migraines, my doctor gave me a full blood workup, an MRI, we did a sleep study, and sent me to a retinologist and a neurologist to make sure nothing else was going on. I also got a full physical. I was given a clean bill of health (although the retinologist did find a condition my regular eye doctor had missed called lattice degeneration). I changed my diet a bit, and I get better sleep, more exercise, less stress, and the migraines are far less frequent. I still get them sometimes when my eyes are bothering me (usually when a bright light burns my retina and I can't focus for a bit). This causes everything in my brain to go crazy. So if you haven't seen an eye doctor yet, I'd say, why not?
Also, if your regular doctor did not suggest it... I think you should talk to another doctor.
Is it worth having the whole thing completely re-evaluated (new MRI and everything) with the new headache person on the new insurance?
Yes! These headaches and other aches and pains are getting in the way of your quality of life and you deserve to reach out to everything available to you to see if you can improve it.
Good luck!
posted by pazazygeek at 8:48 AM on March 18, 2014 [4 favorites]
Have you also seen a retinologist and had your eyes checked? Is it possible you have an eye condition and you need glasses and that's what's causing the headache?
do these sound like migraines?
Migraines are goddamned crazy. I get visual migraines (or, "aura") with no pain. I just can't focus my eyes and sometimes lose the ability to see in my right eye. So, in short, they certainly COULD be migraines.
If not, thoughts on what they could be?
When I first started having the visual migraines, my doctor gave me a full blood workup, an MRI, we did a sleep study, and sent me to a retinologist and a neurologist to make sure nothing else was going on. I also got a full physical. I was given a clean bill of health (although the retinologist did find a condition my regular eye doctor had missed called lattice degeneration). I changed my diet a bit, and I get better sleep, more exercise, less stress, and the migraines are far less frequent. I still get them sometimes when my eyes are bothering me (usually when a bright light burns my retina and I can't focus for a bit). This causes everything in my brain to go crazy. So if you haven't seen an eye doctor yet, I'd say, why not?
Also, if your regular doctor did not suggest it... I think you should talk to another doctor.
Is it worth having the whole thing completely re-evaluated (new MRI and everything) with the new headache person on the new insurance?
Yes! These headaches and other aches and pains are getting in the way of your quality of life and you deserve to reach out to everything available to you to see if you can improve it.
Good luck!
posted by pazazygeek at 8:48 AM on March 18, 2014 [4 favorites]
Wow - this sounds like long lasting misery! As a longtime migraine sufferer you have my sympathy. Some questions - did you ever keep a food/symptom log? Ever done an elimination diet? I'm wondering about triggers - eliminating gluten stopped my migraines pretty completely and I know other people with other triggers who have had similar results - the hard part is figuring out what the trigger is.
Did you ever see a migraine specialist? You don't mention where you are but there are clinics that focus entirely on migraine + headache issues and they might be more useful than a generalist. Your weird blood pressure readings probably mean something and the right specialist might make sense of them. I would definitely start again with a new headache person.
posted by leslies at 9:11 AM on March 18, 2014
Did you ever see a migraine specialist? You don't mention where you are but there are clinics that focus entirely on migraine + headache issues and they might be more useful than a generalist. Your weird blood pressure readings probably mean something and the right specialist might make sense of them. I would definitely start again with a new headache person.
posted by leslies at 9:11 AM on March 18, 2014
In addition to the food/weather/etcc triggers, have you had a specialist check your neck/spine for anything like pinched disks, compressed bits, and... uh... other spine... problems? I know my cousin had some pretty crippling headaches caused by some sort of spine damage that some pretty ok doctors missed the first few times.
posted by Jacen at 9:20 AM on March 18, 2014 [2 favorites]
posted by Jacen at 9:20 AM on March 18, 2014 [2 favorites]
I get migraines, and they are nothing like what you're describing. What you're describing sounds very much like what my sister-in-law was experiencing about thirteen years ago, which -- not to scare you -- turned out to be a brain tumor which led to increased intercranial pressure. She was also initially misdiagnosed as having migraines. I would see a new neurologist and get a second opinion, particularly if you have known white matter lesions.
posted by KathrynT at 9:29 AM on March 18, 2014 [1 favorite]
posted by KathrynT at 9:29 AM on March 18, 2014 [1 favorite]
Absolutely see a specialist.
And then because there's no harm done, consider elimination diets that apply (e.g. The above suggestions for gluten and salt) and try acupuncture, which had had great results for headache sufferers.
posted by AnOrigamiLife at 10:36 AM on March 18, 2014
And then because there's no harm done, consider elimination diets that apply (e.g. The above suggestions for gluten and salt) and try acupuncture, which had had great results for headache sufferers.
posted by AnOrigamiLife at 10:36 AM on March 18, 2014
I'm not sure if my situation is at all related to yours, but I was initially diagnosed with a migraine and it turned out to be something else.
In 2010, after having spent the day at an amusement park (and riding a roller coaster that was pretty bumpy), I got a very bad headache. I went to bed and thought nothing of it. The next morning, I felt okay, but after about 2 hours the headache returned. I left work early and laid down, feeling better.
Next day, same thing. If I did not lay down the headache eventually became excruciating. And that is how it went for about 2 months. I would wake up every day feeling fine, and a headache would gradually appear after about 2 hours, getting worse and worse. It would only go away if I laid down. I was very lucky that my job does not deal with the public, and I have an office. I managed to keep working by laying down on my office floor, with a pillow under my head, working on a laptop propped up on my knees.
On the third day I saw a neurologist. He gave me an MRI which showed nothing, so in absence of other data, he diagnosed it as a migraine. He gave me some pills which did nothing. The next week I returned, and they gave me another MRI which also showed nothing. More tests, more nothing. I tried physical therapy, and no results there either.
Eventually I saw another neurologist for a second opinion. Based on the fact that the headache went away when I laid down, he diagnosed it as a spinal fluid leak. The fluid builds up in your head, causing pressure, which is only relieved when you lay down. I had also told him about my day at the amusement park, when this whole thing started, and about the bumpy roller coaster ride. He thought that could have been the cause, if my head got knocked around enough to create the leak. He even showed me a journal article about someone else getting a spinal fluid leak after being on a roller coaster. He also said that these things usually go away on their own, and that I didn't need to get any kind of treatment for it.
Now the problem here is that MRI's normally catch spinal fluid leaks, and I had 2 that showed nothing. The 2nd neurologist said that this was unusual, but not completely unheard of that it might not show up in an MRI. And he ended up being right that it would go away. It was about 2 months from when it started, to when I felt 100% okay.
So, like I said, I don't know if this is related to your problem. I thought of it because you mentioned that the headache is worse in the morning, and that you feel it in the forehead, which is where I had it too.
So, maybe it's worth seeing a neurologist to get an MRI (since in most people, an MRI would show a spinal fluid leak). Maybe you have something similar to me, or maybe the MRI will show something else. In spinal fluid issues that don't resolve on their own, I have heard of some treatments like injecting a saline solution into the spine to try and "plug" the leak.
posted by LaurenIpsum at 10:45 AM on March 18, 2014
In 2010, after having spent the day at an amusement park (and riding a roller coaster that was pretty bumpy), I got a very bad headache. I went to bed and thought nothing of it. The next morning, I felt okay, but after about 2 hours the headache returned. I left work early and laid down, feeling better.
Next day, same thing. If I did not lay down the headache eventually became excruciating. And that is how it went for about 2 months. I would wake up every day feeling fine, and a headache would gradually appear after about 2 hours, getting worse and worse. It would only go away if I laid down. I was very lucky that my job does not deal with the public, and I have an office. I managed to keep working by laying down on my office floor, with a pillow under my head, working on a laptop propped up on my knees.
On the third day I saw a neurologist. He gave me an MRI which showed nothing, so in absence of other data, he diagnosed it as a migraine. He gave me some pills which did nothing. The next week I returned, and they gave me another MRI which also showed nothing. More tests, more nothing. I tried physical therapy, and no results there either.
Eventually I saw another neurologist for a second opinion. Based on the fact that the headache went away when I laid down, he diagnosed it as a spinal fluid leak. The fluid builds up in your head, causing pressure, which is only relieved when you lay down. I had also told him about my day at the amusement park, when this whole thing started, and about the bumpy roller coaster ride. He thought that could have been the cause, if my head got knocked around enough to create the leak. He even showed me a journal article about someone else getting a spinal fluid leak after being on a roller coaster. He also said that these things usually go away on their own, and that I didn't need to get any kind of treatment for it.
Now the problem here is that MRI's normally catch spinal fluid leaks, and I had 2 that showed nothing. The 2nd neurologist said that this was unusual, but not completely unheard of that it might not show up in an MRI. And he ended up being right that it would go away. It was about 2 months from when it started, to when I felt 100% okay.
So, like I said, I don't know if this is related to your problem. I thought of it because you mentioned that the headache is worse in the morning, and that you feel it in the forehead, which is where I had it too.
So, maybe it's worth seeing a neurologist to get an MRI (since in most people, an MRI would show a spinal fluid leak). Maybe you have something similar to me, or maybe the MRI will show something else. In spinal fluid issues that don't resolve on their own, I have heard of some treatments like injecting a saline solution into the spine to try and "plug" the leak.
posted by LaurenIpsum at 10:45 AM on March 18, 2014
I feel your pain - literally. I have migraines with and without an aura, with and without vomiting. But I also have other issues that make my headaches worse. Right now I am recovering from a bout of optic neuritis and it has really increased the number of headaches (daily) that I get. When I read your post I thought maybe you should have your eyes checked by an ophthalmologist.
But if I were you I would start with my GP, go over my symptom history leaving out the focus on depression and anxiety. A good doc will not get snagged by that info but some will. It sounds like you need a thorough workup done to sort out what is what.
Some of my daily headaches are migraines. Some are just eye pain related to the optic neuritis. It has taken me months to sort out what is what and I have had very supportive medical care.
Take care....I hope you find some answers and some relief.
posted by cairnoflore at 11:31 AM on March 18, 2014
But if I were you I would start with my GP, go over my symptom history leaving out the focus on depression and anxiety. A good doc will not get snagged by that info but some will. It sounds like you need a thorough workup done to sort out what is what.
Some of my daily headaches are migraines. Some are just eye pain related to the optic neuritis. It has taken me months to sort out what is what and I have had very supportive medical care.
Take care....I hope you find some answers and some relief.
posted by cairnoflore at 11:31 AM on March 18, 2014
I have migraines and cluster headaches and have since I was a child. I've never experienced anything like you describe, even when I was getting daily cluster headaches for a year(!) I was still functional and I didn't have the other issues you describe with memory or brain fog or constant pain. I just had a crappy headache for 30 minutes every afternoon. Some of those drugs should work if it's a migraine (have you tried excedrin migraine, btw?) I was actually prescribed a low dose of lamictal for 6 months to clear up my migraines once because they had become too frequent and it worked. And migraine triggers usually become apparent to the user pretty quickly.
Migraines are sucky but nowhere near that level of sucky, imho. Nthing the advice to see a really good neurologist or two.
posted by fshgrl at 11:32 AM on March 18, 2014
Migraines are sucky but nowhere near that level of sucky, imho. Nthing the advice to see a really good neurologist or two.
posted by fshgrl at 11:32 AM on March 18, 2014
Just to address one minor part of this: the aura. I usually get migraines without aura but have had a very limited number with the aura which was completely unmistakeable. Mayo clinic has a video that simulates the aura which you could compare to your experience at http://www.mayoclinic.org/diseases-conditions/migraine-with-aura/multimedia/migraine-aura/vid-20084707
posted by kbuxton at 11:37 AM on March 18, 2014
posted by kbuxton at 11:37 AM on March 18, 2014
Yes the aura is unmistakable. Also after a classic migraine passes, the next day a lot of people get a really blissed out feeling for hours.
And migraines end. Cluster headaches are short by definition. Constant pain sounds like something else
posted by fshgrl at 11:50 AM on March 18, 2014
And migraines end. Cluster headaches are short by definition. Constant pain sounds like something else
posted by fshgrl at 11:50 AM on March 18, 2014
#5 and #9 remind me of my own headaches. I've found that mine are mostly tension-related (but I definitely have other triggers).
Massage is extremely helpful in keeping the frequency and intensity of my headaches under control. I have some serious areas of tension in my neck and shoulders that can cause excruciating pain. I'm able to work on some of them myself using a Theracane, and then do a series of stretches. If I'm desperate, I'll get my husband to stick an elbow into the spot that's really tight. I also have one of those powerful back massagers, but that's much less effective.
It sounds to me like you have a lot more going on than simple tension headaches, so you should definitely try to see different doctors/specialists. But perhaps massage and stretching might help ease a little of your pain in the meantime.
posted by MsVader at 12:26 PM on March 18, 2014
Massage is extremely helpful in keeping the frequency and intensity of my headaches under control. I have some serious areas of tension in my neck and shoulders that can cause excruciating pain. I'm able to work on some of them myself using a Theracane, and then do a series of stretches. If I'm desperate, I'll get my husband to stick an elbow into the spot that's really tight. I also have one of those powerful back massagers, but that's much less effective.
It sounds to me like you have a lot more going on than simple tension headaches, so you should definitely try to see different doctors/specialists. But perhaps massage and stretching might help ease a little of your pain in the meantime.
posted by MsVader at 12:26 PM on March 18, 2014
Have you tried going to a neuro-ophthalmologist? This type of specialist can help determine the cause of your headaches.
posted by parakeetdog at 12:33 PM on March 18, 2014 [1 favorite]
posted by parakeetdog at 12:33 PM on March 18, 2014 [1 favorite]
Btw the light sensitivity can be a side effect of rosacea. I've always had light colored eyes and huge pupils too but I've started getting mild rosacea in middle age and my eyes are now stupidly light sensitive, as opposed to merely annoyingly light sensitive. My eye doc said it's probably related. I wear sunglasses all. the. time. Bright lights give me a searing pain in my head if I accidentally look at one too.
posted by fshgrl at 1:21 PM on March 18, 2014
posted by fshgrl at 1:21 PM on March 18, 2014
Response by poster: To answer some questions:
I saw a neurologist back in 2011 when this was all blowing up originally, and she was the one who read the MRI. I did not continue to see her as she felt there was no need, and she referred me to the headache/migraine specialist that I currently still see.
I have never had a spinal tap, but boy, that intracranial hypertension thing sure does sound familiar.
This is not the same doctor I was seeing in 2011...that was my former PCP who I left in 2012. My current PCP has not dealt with any of these issues with me as I have the headache specialist.
I have glasses and get regular eye exams. I used to wear contacts and wear sunglasses frequently due to the light sensitivity but am not able to wear contacts anymore, and my insurance doesn't pay for prescription sunglasses. Hopefully at some point soon I can get some. I feel like when I've told the optometrist about the visual issues I experience, like trouble focusing on objects (looking through/past things instead of at them), they've just sort of shrugged and said that's part of aging. Well, I'm only 35, so I hate to think what 50's going to be like.
I have not kept a food log. I know that my headaches are worse if I don't eat or if I drink red wine, though.
I haven't seen anyone for neck/spine issues...I did see a chiropractor a couple of times a couple of years ago but don't really remember much about it.
The brain fog/memory issues referred to in my post from 2011 were mostly linked to my Wellbutrin usage at the time and improved quite a bit after I stopped taking it. Any brain fog I have right now can be attributed to Topamax.
fshgrl, it's interesting you mention rosacea, because I do have that.
****
So, it's sounding like the best course of action after I get set up with a new PCP is to get a referral to a neurologist and go from there?
Thanks so much for the good ideas so far!
posted by altopower at 1:34 PM on March 18, 2014 [1 favorite]
I saw a neurologist back in 2011 when this was all blowing up originally, and she was the one who read the MRI. I did not continue to see her as she felt there was no need, and she referred me to the headache/migraine specialist that I currently still see.
I have never had a spinal tap, but boy, that intracranial hypertension thing sure does sound familiar.
This is not the same doctor I was seeing in 2011...that was my former PCP who I left in 2012. My current PCP has not dealt with any of these issues with me as I have the headache specialist.
I have glasses and get regular eye exams. I used to wear contacts and wear sunglasses frequently due to the light sensitivity but am not able to wear contacts anymore, and my insurance doesn't pay for prescription sunglasses. Hopefully at some point soon I can get some. I feel like when I've told the optometrist about the visual issues I experience, like trouble focusing on objects (looking through/past things instead of at them), they've just sort of shrugged and said that's part of aging. Well, I'm only 35, so I hate to think what 50's going to be like.
I have not kept a food log. I know that my headaches are worse if I don't eat or if I drink red wine, though.
I haven't seen anyone for neck/spine issues...I did see a chiropractor a couple of times a couple of years ago but don't really remember much about it.
The brain fog/memory issues referred to in my post from 2011 were mostly linked to my Wellbutrin usage at the time and improved quite a bit after I stopped taking it. Any brain fog I have right now can be attributed to Topamax.
fshgrl, it's interesting you mention rosacea, because I do have that.
****
So, it's sounding like the best course of action after I get set up with a new PCP is to get a referral to a neurologist and go from there?
Thanks so much for the good ideas so far!
posted by altopower at 1:34 PM on March 18, 2014 [1 favorite]
You can get prescription sun glasses from zenni optical online for $30-50.
posted by fshgrl at 2:08 PM on March 18, 2014
posted by fshgrl at 2:08 PM on March 18, 2014
What kind of work do you do?
The reason I ask is that I have daily headaches that are fucking maddening. And mine are most likely a tension-migraine hybrid. Analgesics don't work very well for me nor do migraine preparations. I do take Topamax which does head off some of my headaches, but not all of them. In fact, I'm going through a period right now where pain will shoot from my head down my neck into my arm all day long. So the pain is related to cramping muscles and migraines put together.
Could be worth looking into. Best to you. Migraines (and headaches in general) suck bad.
posted by strelitzia at 3:39 PM on March 18, 2014
The reason I ask is that I have daily headaches that are fucking maddening. And mine are most likely a tension-migraine hybrid. Analgesics don't work very well for me nor do migraine preparations. I do take Topamax which does head off some of my headaches, but not all of them. In fact, I'm going through a period right now where pain will shoot from my head down my neck into my arm all day long. So the pain is related to cramping muscles and migraines put together.
Could be worth looking into. Best to you. Migraines (and headaches in general) suck bad.
posted by strelitzia at 3:39 PM on March 18, 2014
I think your MRI from 2011 needs to be repeated now to see if there are any changes in the frontal lobe lesions that might account for some of your headache pain - which sounds a lot more like cluster headache pain than migraine pain to me, not that it makes much difference since they're both so difficult to treat effectively. When I had migraines, Midrin worked for me like a miracle drug, but that was SO long ago they probably don't even make it anymore.
I'd like to know, though: Do you still have any tremor? Any weakness/numbness/burning in your legs? Any trouble with words or speech? Are you still inclined to move slowly and sluggishly?
Do you have any trouble walking - taking tiny steps/shuffling, or feeling rushed and nervous with people coming up behind you, walking on uneven ground, or with balance? Has anyone mentioned a lack of expression on your face, especially when you're tired? Any trouble knowing how high or low to step with stairs or any trouble turning corners too far or too fast? When you walk, do you swing both arms equally? Any problem with a drooping eyelid or trouble swallowing?
All the neuro stuff I've listed is typical of Parkinson's Disease. I always thought it was only for old people, but not so - it's more and more common in younger folks now - 20's and 30s and 40s. The disease itself is very slowly progressive, so the symptoms show up a little at a time and are consequently hardly noticed until they seriously interfere with life. Still, the tendency is to keep going, attributing all the trouble to other little things or even to aging. As it happens, though, Parkinson's isn't too bad for a chronic illness - it's pretty controllable with medication; it's been 19 years since I was diagnosed. In my case, I was a medical transcriptionist - a speedy one - who suddenly couldn't type anymore without holding down the space bar or the f key or the k key, for a whole row of kkkkkkkkks! Aaargh. Scary and frustrating.
Do see a neurologist. It's time for a recheck now anyway. You could easily have cluster headaches or migraines or vascular headache or CSF pressure headaches or headaches from your frontal lesions and still have underlying Parkinson's. In fact, the rigidity of Parkinson's can cause some terrific headaches just from the stiff neck and tightness of the neck muscles - hard as a rock to touch. Headache can be tough to pin down, as you're well aware.
But ask your neurologist to check for cogwheeling rigidity - a very simple part of a neuro exam. That's the way a rheumatologist found mine, and within 5 minutes of meeting me. Looking back at photos, though, I think it was my "waxy, stiff face" that gave it all away.
I too thought I had a brain tumor - my father died of one - and even though it was hard to deal with the idea of Parkinson's (hard? it was hell!), I'm okay and still kicking 20 years later.
Please, please keep us updated, and I wish you the best, including a full and honest diagnosis and excellent treatment.
posted by aryma at 7:38 PM on March 18, 2014 [3 favorites]
I'd like to know, though: Do you still have any tremor? Any weakness/numbness/burning in your legs? Any trouble with words or speech? Are you still inclined to move slowly and sluggishly?
Do you have any trouble walking - taking tiny steps/shuffling, or feeling rushed and nervous with people coming up behind you, walking on uneven ground, or with balance? Has anyone mentioned a lack of expression on your face, especially when you're tired? Any trouble knowing how high or low to step with stairs or any trouble turning corners too far or too fast? When you walk, do you swing both arms equally? Any problem with a drooping eyelid or trouble swallowing?
All the neuro stuff I've listed is typical of Parkinson's Disease. I always thought it was only for old people, but not so - it's more and more common in younger folks now - 20's and 30s and 40s. The disease itself is very slowly progressive, so the symptoms show up a little at a time and are consequently hardly noticed until they seriously interfere with life. Still, the tendency is to keep going, attributing all the trouble to other little things or even to aging. As it happens, though, Parkinson's isn't too bad for a chronic illness - it's pretty controllable with medication; it's been 19 years since I was diagnosed. In my case, I was a medical transcriptionist - a speedy one - who suddenly couldn't type anymore without holding down the space bar or the f key or the k key, for a whole row of kkkkkkkkks! Aaargh. Scary and frustrating.
Do see a neurologist. It's time for a recheck now anyway. You could easily have cluster headaches or migraines or vascular headache or CSF pressure headaches or headaches from your frontal lesions and still have underlying Parkinson's. In fact, the rigidity of Parkinson's can cause some terrific headaches just from the stiff neck and tightness of the neck muscles - hard as a rock to touch. Headache can be tough to pin down, as you're well aware.
But ask your neurologist to check for cogwheeling rigidity - a very simple part of a neuro exam. That's the way a rheumatologist found mine, and within 5 minutes of meeting me. Looking back at photos, though, I think it was my "waxy, stiff face" that gave it all away.
I too thought I had a brain tumor - my father died of one - and even though it was hard to deal with the idea of Parkinson's (hard? it was hell!), I'm okay and still kicking 20 years later.
Please, please keep us updated, and I wish you the best, including a full and honest diagnosis and excellent treatment.
posted by aryma at 7:38 PM on March 18, 2014 [3 favorites]
Your symptoms aren't 100% (but then no one with it is) but reading through, I have to suggest (Idiopathic) Intracranial Hypertension, sometimes still called by the misnomer pseudotumor cerebri (false brain tumor).
(And now I skim and see that it's already been mentioned, so I'm not the only one thinking it...)
I have this, and too many of your symptoms sound all too familiar. It can go in and out of remission.
It's late and I have to get to bed because MY head is acting up - it's been back for almost a year and a half now - so I can't read what others wrote, but I was first diagnosed in 2005, so I've been dealing with it for a while, and I was luckily diagnosed rather quickly. (Most take months or years, since it's diagnosed by ruling everything else out, and then having a high opening spinal tap pressure measurement, and it's rare enough that it's not often considered, let alone suspected.)
I also have migraines, and have had stress headaches in the past, and I tend toward headache when tired or dehydrated... and I guarantee you, I'm an expert at this point at defining which type it is, for me. And for me, migraines and the IIH headaches are not even on the same plane of existence... sort of like comparing a stubbed toe with one crushed under a steamroller.
I'm happy to answer any questions about my IIH experiences, from the OP or anyone else that wants to message me - IIH is rare enough that those with, or those who might have it - need to stick together if we're ever going to find any answers.
posted by stormyteal at 2:57 AM on March 19, 2014 [1 favorite]
(And now I skim and see that it's already been mentioned, so I'm not the only one thinking it...)
I have this, and too many of your symptoms sound all too familiar. It can go in and out of remission.
It's late and I have to get to bed because MY head is acting up - it's been back for almost a year and a half now - so I can't read what others wrote, but I was first diagnosed in 2005, so I've been dealing with it for a while, and I was luckily diagnosed rather quickly. (Most take months or years, since it's diagnosed by ruling everything else out, and then having a high opening spinal tap pressure measurement, and it's rare enough that it's not often considered, let alone suspected.)
I also have migraines, and have had stress headaches in the past, and I tend toward headache when tired or dehydrated... and I guarantee you, I'm an expert at this point at defining which type it is, for me. And for me, migraines and the IIH headaches are not even on the same plane of existence... sort of like comparing a stubbed toe with one crushed under a steamroller.
I'm happy to answer any questions about my IIH experiences, from the OP or anyone else that wants to message me - IIH is rare enough that those with, or those who might have it - need to stick together if we're ever going to find any answers.
posted by stormyteal at 2:57 AM on March 19, 2014 [1 favorite]
Response by poster: I work part-time (20 hours a week) as an office manager, so sitting at a computer. I do try to get up frequently and move my head and neck around so things don't get stiff. I also am a pianist/organist which can be hard on the back as well.
I do still have a bit of tremor, yes. Not all the time, though, so I'm not sure what to attribute it to. I do have really shitty balance, but I've had that since I was a teenager so it may just be me and not related to anything. None of the other Parkinson's symptoms you mention seem to fit.
I will definitely be keeping this intracranial hypertension in mind (ha!).
Two more weeks till I can take the next steps on this...
posted by altopower at 8:41 AM on March 19, 2014
I do still have a bit of tremor, yes. Not all the time, though, so I'm not sure what to attribute it to. I do have really shitty balance, but I've had that since I was a teenager so it may just be me and not related to anything. None of the other Parkinson's symptoms you mention seem to fit.
I will definitely be keeping this intracranial hypertension in mind (ha!).
Two more weeks till I can take the next steps on this...
posted by altopower at 8:41 AM on March 19, 2014
i haven't read all the answers above, so i apologize if i'm repeating anything....
have you tried ibuprofen instead of naproxen? this was key for me with my chronic daily migraines. i had been taking acetaminophen because advil wrecks my stomach, but my neuro was like, "no really, take 800mg of advil when the headache comes on". and i did. and it helps so much (it's a different kind of pain reliever). headaches go away >95% of the time. YMMV. i am also on topamax (brand name, generic was worthless, something to consider).
i do still get migraines. they are triggered by wacky weather--rain storms coming in, hurricaine sandy, all these snow storms, etc. also if i get a tension headache and don't treat it IMMEDIATELY it will morph into a migraine. if i am dehydrated and haven't eaten and don't take care of it, i will get a migraine. how is your stress level? are your neck/shoulders abnormaly tight? blood sugar?
have you thought about botox? that helps a lot of folks with migraines, though i haven't tried it personally. you might have trouble getting insurance to cover it.
the lesions on your brain certainly could be from your migraines. i had an mri a couple of years ago and everything looked fine except for a few lesions that my amazing neuro said were common in people with migraines and that i shouldn't be worried about them. if any one of my other doctors had said that to me i would have been suspicious, but i trust her absolutely.
posted by misanthropicsarah at 12:25 PM on March 19, 2014
have you tried ibuprofen instead of naproxen? this was key for me with my chronic daily migraines. i had been taking acetaminophen because advil wrecks my stomach, but my neuro was like, "no really, take 800mg of advil when the headache comes on". and i did. and it helps so much (it's a different kind of pain reliever). headaches go away >95% of the time. YMMV. i am also on topamax (brand name, generic was worthless, something to consider).
i do still get migraines. they are triggered by wacky weather--rain storms coming in, hurricaine sandy, all these snow storms, etc. also if i get a tension headache and don't treat it IMMEDIATELY it will morph into a migraine. if i am dehydrated and haven't eaten and don't take care of it, i will get a migraine. how is your stress level? are your neck/shoulders abnormaly tight? blood sugar?
have you thought about botox? that helps a lot of folks with migraines, though i haven't tried it personally. you might have trouble getting insurance to cover it.
the lesions on your brain certainly could be from your migraines. i had an mri a couple of years ago and everything looked fine except for a few lesions that my amazing neuro said were common in people with migraines and that i shouldn't be worried about them. if any one of my other doctors had said that to me i would have been suspicious, but i trust her absolutely.
posted by misanthropicsarah at 12:25 PM on March 19, 2014
These don't sound a thing like the migraines I used to experience 2-3 times a week, but my doctor put me on tryptophan for something unrelated and now I only have them once a year or so. It's worth a try!
posted by tenaciousmoon at 7:30 AM on March 22, 2014
posted by tenaciousmoon at 7:30 AM on March 22, 2014
Hi!
I'm a little late to the party but I thought I'd contribute with my two cents, because I've had somewhat similar experiences.
I used to get migraines occasionally during high school and college and they were what you typically associate with the word migraine: blinding pain for six to twelve hours, sensitivity to light and movement, etc. Well, about four years ago, I started getting some other strange symptoms that I didn't initially consider to be migraine related. I was abnormally sensitive to light, had difficulty focusing my eyes, and worst of all, I felt a weird sort of brain fog was slowing me down. I felt sluggish all the time.
I bounced around doctors and had a variety of tests -- EKG, EEG, CAT scan, MRI on my brain, even sinus surgery (I had some very good healthcare for a few years, thankfully). I got nothing from doctors. After a year or so of wasting everyone's time, I was referred to a neuro-ophthalmologist. After speaking to him for about ten minutes, he told me it was migraines. He told me about once a year he got someone coming to him with the exact same sort of symptoms. Weird visual problems, sluggishness (without headaches), constant headaches (sometimes small, sometimes large).
He explained to me that some people who get migraines get those persistent accompanying symptoms. This was a doctor who was pretty well-respected in his field and someone who spent a lot of time explaining to me the prevailing theories and so forth. I was pretty reluctant to believe it was migraines after all that time because I didn't always get headaches with the symptoms. Turns out that it's possible to get the accompanying side effects without headaches.
He asked if I wanted to go the medication route or try to work on a regimen to prevent them first and see how it goes. I went the latter. He emphasized consistency -- that people who get frequent migraines have effects worsened when breaking routine. The closer you keep a routine, the better things will be -- especially keeping a consistent sleep schedule. I told him my symptoms get worse during the day, mostly during weekdays. He asked me what kind of lighting we had at my place of work; it was fluorescent. It turns out that sort of lighting in particular exacerbates the problem. I had just got my first 8-5 job and was sitting in a windowless building for 50 hours a week under those lights. It made sense why I suddenly had a worsening of symptoms.
Anyway, I made a concerted effort to keep a much stricter daily regimen -- eating and sleeping at the same times each day. He recommended I get a pair of glasses with Corning photochromic lenses -- archaic glass lenses that specifically cut down on low frequency light-waves, a particular irritant to migraine sufferers. They're a goofy looking orange color, but I wear them at work and they alone have made a dramatic difference.
I guess the point of this ramble is that I had (and still have) symptoms not commonly associated to migraines. Even when I was told that's what they were I was positively convinced the doctor was wrong. In my case, it turns out I was wrong. I still get small headaches almost daily, I'm permanently light-sensitive, have visual snow in my vision, and occasionally get odd flashes of spots. But by following the advice for preventing migraines, I don't get the severe headaches as frequently and I don't get the "sluggish and out of it" feeling from headaches-without-the-pain nearly as often. And those were the big problems.
It doesn't hurt to go back to another doctor to verify (or maybe a migraine specialist), but to answer your original question: yes, the symptoms can possibly be migraines. It may not be common, but it happens.
posted by HonorShadow at 9:10 PM on March 24, 2014 [3 favorites]
I'm a little late to the party but I thought I'd contribute with my two cents, because I've had somewhat similar experiences.
I used to get migraines occasionally during high school and college and they were what you typically associate with the word migraine: blinding pain for six to twelve hours, sensitivity to light and movement, etc. Well, about four years ago, I started getting some other strange symptoms that I didn't initially consider to be migraine related. I was abnormally sensitive to light, had difficulty focusing my eyes, and worst of all, I felt a weird sort of brain fog was slowing me down. I felt sluggish all the time.
I bounced around doctors and had a variety of tests -- EKG, EEG, CAT scan, MRI on my brain, even sinus surgery (I had some very good healthcare for a few years, thankfully). I got nothing from doctors. After a year or so of wasting everyone's time, I was referred to a neuro-ophthalmologist. After speaking to him for about ten minutes, he told me it was migraines. He told me about once a year he got someone coming to him with the exact same sort of symptoms. Weird visual problems, sluggishness (without headaches), constant headaches (sometimes small, sometimes large).
He explained to me that some people who get migraines get those persistent accompanying symptoms. This was a doctor who was pretty well-respected in his field and someone who spent a lot of time explaining to me the prevailing theories and so forth. I was pretty reluctant to believe it was migraines after all that time because I didn't always get headaches with the symptoms. Turns out that it's possible to get the accompanying side effects without headaches.
He asked if I wanted to go the medication route or try to work on a regimen to prevent them first and see how it goes. I went the latter. He emphasized consistency -- that people who get frequent migraines have effects worsened when breaking routine. The closer you keep a routine, the better things will be -- especially keeping a consistent sleep schedule. I told him my symptoms get worse during the day, mostly during weekdays. He asked me what kind of lighting we had at my place of work; it was fluorescent. It turns out that sort of lighting in particular exacerbates the problem. I had just got my first 8-5 job and was sitting in a windowless building for 50 hours a week under those lights. It made sense why I suddenly had a worsening of symptoms.
Anyway, I made a concerted effort to keep a much stricter daily regimen -- eating and sleeping at the same times each day. He recommended I get a pair of glasses with Corning photochromic lenses -- archaic glass lenses that specifically cut down on low frequency light-waves, a particular irritant to migraine sufferers. They're a goofy looking orange color, but I wear them at work and they alone have made a dramatic difference.
I guess the point of this ramble is that I had (and still have) symptoms not commonly associated to migraines. Even when I was told that's what they were I was positively convinced the doctor was wrong. In my case, it turns out I was wrong. I still get small headaches almost daily, I'm permanently light-sensitive, have visual snow in my vision, and occasionally get odd flashes of spots. But by following the advice for preventing migraines, I don't get the severe headaches as frequently and I don't get the "sluggish and out of it" feeling from headaches-without-the-pain nearly as often. And those were the big problems.
It doesn't hurt to go back to another doctor to verify (or maybe a migraine specialist), but to answer your original question: yes, the symptoms can possibly be migraines. It may not be common, but it happens.
posted by HonorShadow at 9:10 PM on March 24, 2014 [3 favorites]
Response by poster: I have a Mirena IUD, and have been having worsening PMS symptoms in the last six months...upon reading the Mirena side effects, lo and behold, headache/migraines. I got my first Mirena in 2008, the headaches started in 2010.
Possible?
posted by altopower at 5:53 PM on March 25, 2014
Possible?
posted by altopower at 5:53 PM on March 25, 2014
This thread is closed to new comments.
I have always suffered from migraines . . . or what I thought were migraines, but some of the symptoms didn't match up very well. One thing I did that helped figure out the great headache mystery was while I was in the middle of one of my excrutiating headaches was to (and this was hard to do in so much pain) sit down at the computer and write in all of my symptoms and do a search to see what came up. Turns out I havecluster headaches. It was helpful to do this while in the middle of the headache because I was able to list every single symptom I was having at that very second . . . pain behind one eye, runny nose, droopy eye, confusion, noise and light aversion, etc. A lot of these were symptoms I'd forget after the headache and really I'd just narrow it down to horrible pain behind one eye.
Have you seen or will you be seeing a neurologist? Regardless of the doctor you see, please throw words out there like "debilitating," "interferes with daily life," "not able to function." Let them know of the severity or the situation and follow-up. If a test comes up negative, be proactive and ask "What next?" Keep doing that until you are happy with the diagnosis and the plan of action to help you get better.
posted by Sassyfras at 7:20 AM on March 18, 2014 [3 favorites]