Please help with aggravating medical issue
July 6, 2016 6:49 PM   Subscribe

I have been having a headache-y/migraine-y, sinus-y, fatique-y issue for awhile and am feeling stuck.

This is going to be long because I want to be sure to cover everything. Everything has truly been thrown at the wall below.

First of all, it's hard for me to know exactly how often I experience these issues because sometimes they are so much my normal that I'm not necessarily aware of them until I stop and think, no, this doesn't feel right. The issues have also kind of snuck up on me to the point where I'm not really sure when they began. But, this morning/today I had a really concrete 'episode' that at least provides a good example of what I'm dealing with.

In the middle of last night and/or this early morning, I woke up with a terrible headache. Unfortunately, because I was just awakened from sleep and was in pain, I didn't take care to note where the pain was located (this is something I've never been smart about, but I have now started a headache journal). I managed to get back to sleep. In the morning, when my alarm went off, I found it incredibly, incredibly difficult to wake up and get out of bed. In fact, I slept on and off through the alarm for about an hour. Throughout today I have felt fatigued, nauseous, dizzy and headachey but have not actually vomited today or ever from a headache. I have felt stupid, like my head is stuffed with cotton or something, and have trouble focusing mentally and with my eyes. I feel like I have a bad hangover but didn't have anything to drink last night (I drink very little in general, maybe 1 drink a week). My face also frequently gets hot when I'm feeling like this and I am also prone to getting hot ears. This morning I took some ibuprofen after breakfast, which I think helped take some edge off the headache but it's still been there all day, sort of 'rolling' through my head. By that I mean that my headache doesn't just stick in one place, but that, for example, my head kind of throbs in my forehead area, then sort of squeezes at the temples, then pinches in pain around my eyes, and then will hurt in the back of my head, etc. Not that these things can't all happen at once, but the pain definitely isn't just concentrated in one place. It will kind of act up in different spots.

I have some type of nose-clogging issue and I reliably have pain and sensitivity between my eyes and along my eyebrow area. Within the last 3 months I was tested for allergies and had a CAT scan of my sinuses. No allergies were found and the CAT scan showed that my sinuses were clear. No polyps, and only a very slightly deviated septum. I can usually breathe ok through my nose as a whole, but when I plug one nostril the breathing through the other is definitely obstructed. I was diagnosed with vasomotor rhinitis, or nonallergic rhinitis. I was given a steroidal nasal spray and that works pretty well for the nasal obstruction as long as I'm using it regularly. It doesn't really seem to help with the pain around the eyes, though.

I also sometimes get real, full-blown migraines, or at the very least aura. They are almost always preceded by physical exertion and are perhaps caused by dehydration, hunger, and/or not breathing well during exercise. Typically I will workout (CrossFit, but it's happened after a trip to the climbing gym and a long hike, as well) and then the aura will hit within the hour. It starts as a funky spot in my vision that expands out to crazy vibrating squiggly lines. After a half hour or so it subsides and then pain and nausea sets in. Again, I haven't been great about really documenting the location of the pain well, but I don't think it's usually a concentrated pain. More like the pain just sort of surrounds my head. Because of the pain around my eyes, though, I do often get some increased pain and stabbiness there.

Because of the migraines and another symptom I frequently have -- palinopsia, or trailing images -- I took a visit to a neurologist. She did a MRI, which wasn't terribly successful because I have braces (not sure why she ordered it, then) but what was visible was fine. She said she 'wasn't worried' about the pain around my eyes and that I could live with that. Which . . . I'm going to make an appointment with another neurologist (which is a bit tough because I have Kaiser).

The neurologist told me to get my eyes checked, which I did. Health-wise, they are fine. I have astigmatism and am near-sighted, which I have glasses to fix. They do not fix my focusing issue when I'm not feeling well though. When I asked the eye doctor what I could do about the pain around my eyes she just said 'oh there's nothing you can do about that' before literally turning on her heel and rushing off to see another patient. ¯\_(ツ)_/¯. Needless to say, I was not satisfied with that answer.

Anyway, my biggest area of concern is not really the full-blown migraines but rather the kind of lower-grade issues I described in the first larger paragraph above that really affect my quality of life. The FATIGUE, nausea, slight dizziness, difficulty focusing, and headaches. I would say there are times of the year (so, maybe affected by seasons) where I feel like that most days. What I would love help on is: hey, do you have any idea what could be wrong with me? Do you have suggestions on how I should approach doctors or things I should ask them about or point them towards? I've had some really discouraging interactions with some of these Kaiser doctors and need all the help advocating for myself that I can get.

Some vitals: 33 year old woman, a bit overweight but healthy diet overall (been low-carbing for a couple months). Physically active when feeling well and try to at least go for several long walks a week when I'm not feeling great. Very healthy blood pressure. IGA deficiency. Anxiety and depression treated with generic prozac for about 2.5 years. Hashimoto's Thyroiditis managed and treated with generic synthroid -- took brand name for 5 years or so, then Kaiser switched me to generic around 2013. Fructose malabsorption. Tested negative for celiac. Some type of blood sugar issue -- through at-home testing it looks like reactive hypoglycemia (this is the reason for the low-carbing). Father and some uncles and maybe an aunt have diabetes. Mother's sister used to have migraines and had a stroke in her 50's, I believe.
posted by imalaowai to Health & Fitness (16 answers total) 6 users marked this as a favorite
Response by poster: Forgot I wanted to include my caffeine consumption: I don't drink coffee but I do drink several cups of black tea a day. Coffee is too intense for me, for some reason.
posted by imalaowai at 6:59 PM on July 6, 2016

Best answer: I understand you've been tested for allergies and came out clean. Have you tried taking antihistamines for like a week to see if you get any improvements? Could be you're allergic to something they didn't test for.

Antihistamines will block histamine production but you have to give your body time to clear out the existing histamines to see improvement, hence trying the meds for a week to really see any potential results.
posted by lizbunny at 7:31 PM on July 6, 2016 [1 favorite]

I'm actually wondering if I wrote this under a false identity. I have the same thing- the intense fatigue and face/sinus pain, often enough to be a constant but intermittent enough to occasionally forget. Allergy testing, CAT scans, the works. And...woke up with major pain today after about a week or two without. It wrecks the day, impossible to think, difficult to socialize and so hard to pinpoint a cause...Please let me know, I will be watching for answers too!! (I take nasal sprays but went off the Zyrtec, wondering if that's the cause this time??)
posted by bquarters at 7:50 PM on July 6, 2016

I started taking Berocca (vitamins marketed as a hangover cure) and it solved most of my migraines.

I think it's the electrolytes, especially the B vitamins and the magnesium.

Pills just go in one end and out the other, but the Berocca tablet that turns into a fizzy drink works for me. The closest thing I've found in the US is flintstones chewables but those don't have magnesium.

Try taking an epsom salt bath next time you have a migraine and see if that improves things any.
posted by aniola at 8:00 PM on July 6, 2016 [1 favorite]

Best answer: I have a couple of thoughts, which may or may not be helpful in your situation.

First, have you had your iron levels tested? Your symptoms, minus the congestion and headache, sound a lot like my symptoms when my iron was super low. It's probable your doctors checked your hemoglobin/hematocrit (tests for anemia) as part of this investigation (they're part of a CBC), but you may want to specifically have your ferritin tested, which will give you a better picture of your iron stores. With me, my hemoglobin/hematocrit were always just fine, and it wasn't till a med student suggested a ferritin test that we found my super low level and started treating it. While you're at it, maybe have your folate, B12, and D levels tested as well, as deficiencies there also tend to result in vague, weird symptoms.

Second, are you taking any vitamins or supplements? Is it possible one of those is messing with you, either as an outright allergy or just some weird sensitivity? For me, iron pills make me more fatigued/icky feeling, so I avoid them and anything fortified, and got an iron infusion instead. Folate also gives me weird symptoms. None of these reactions are, you know, accepted medical things, but I figure my body's weird and I go with what works for me. Might be worth experimenting with your supplements and vitamins.

Third, in my opinion, not all generic Prozac is the same. There are certain manufacturers that I like and that I avoid. It might be worth trying a different brand if your psychiatrist is willing to prescribe a specific manufacturer to experiment. For me, it didn't show up with symptoms like this, just increased anxiety/OCD. Again, I am sort of a special snowflake here, but again, I do what works for me.

Fourth, how's your neck and shoulders? I had a lot of neck and shoulder pain and tension for a long time, after a childhood car crash. My super tight neck would absolutely lead to headaches and sometimes, if the tension was just right (especially in my SCMs in the front of my neck), to nausea and dizziness and general icky feelings. Not fatigue directly, but dealing with chronic pain and icky feelings can itself be fatiguing.

Fifth, when I was having chronic migraines, I would also get congestion and nasal problems. I explored the sinus route too, and a doctor told me that migraines and sinus stuff is kind of a chicken-and-egg problem - sinus stuff can happen first and cause migraines, or migraines can happen first and cause actual legitimate sinus swelling and nasal congestion and runny noses, etc. So if you've been coming at it mostly from the sinus angle, it might be worth it to switch it up and come at it from the migraine angle, even if that's not the symptom that's bothering you most day-to-day. There was recently a question on chronic/weird headaches that might be worth looking at, along these lines.

I have zero idea if any of this will apply to you, but I thought I'd throw it all out there in case something looks like it's worth pursuing. They at least might be ideas to rule out!

Good luck!
posted by bananacabana at 8:16 PM on July 6, 2016 [3 favorites]

If you're eating low carb, you absolutely should be supplementing potassium, salt and magnesium. Potassium "supplements" won't be enough; I use nusalt or lite salt on my food or in my water bottle.

Check out the Keto thread on Reddit - especially the sidebar intro, which talks about how much salt, potassium and magnesium you should be getting if you eat low carb.
posted by vitabellosi at 8:25 PM on July 6, 2016 [1 favorite]

Best answer: My first thought is that all/ most of your headaches could be migraines (not just the serious/ aura ones). I never get a migraine without nausea, impaired brain function (forgetting numbers, increased clumsiness, fuzziness) and just general blerg-ness.

You don't mention any migraine medications (maybe the Prozac has an effect? Not sure. I use Cymbalta for depression and migraines - there are medications that treat pain, depression and anxiety, and depression medications that can exacerbate migraines), so I'll assume you're not being treated specifically for them. It's no walk in the park to figure out what works for you; there are a lot of different medications, but I can't imagine trying to rely solely on otc pain medications. :(

I have had life-long allergies (environmental, food) and started having bad sinus infections/ headaches in my twenties. An ENT diagnosed the headaches as migraines, and said, in his experience, the majority of what people assumed were sinus headaches were actually migraines. True to his diagnosis, I haven't had a sinus infection in ten years. Unlike you, I've never had auras or vision issues, so I was shocked to think I could have migraines. Like you I have issues with fatigue, nausea (digestive problems), feeling stupid, having the short-term memory of a gnat and dealing with pain from not only the headaches but upper back and neck pain. All of these symptoms become more acute, to some degree around a migraine, which could last from 1-5 days, with some or all of the listed symptoms.

I currently see a doctor in the Headache Clinic - they oversee my daily/ abortive migraine meds and my 4x/year Botox injections. It has taken several years, but I went from 3-5 days/ week with a migraine to 1/ week, and I have medications to help and a much better sense of what I need physically to keep them at bay (exercise, breathing, stretching). (EDITED TO ADD: weather changes are pretty much my main migraine trigger these days - I usually get one 1-2 days before rain. If you live in an area with weather changes, your pain might be related.)

In addition to your prescribed medications, the clinic recommends vitamins (since that's been mentioned): fairly high doses of riboflavin, magnesium (start slow or you'll be spending a lot of time in the bathroom) and coQ10.

MeMail me if you want more info on the meds I take. I really hope you are able to find some relief. I would definitely seek out a Pain Management/ Headache Clinic and be stubborn. It took me 3+ months to get into the Headache Clinic for that initial assessment, but it was ultimately worth it.
posted by queseyo at 8:28 PM on July 6, 2016 [4 favorites]

Did they check your optic nerve or just your eyes themselves. As I recall it's the dealy that takes a photo of the back of your eyeball that they use to check for optic nerve issues.
posted by fshgrl at 9:43 PM on July 6, 2016

Seconding basically everything queseyo said. You sound like you have pretty constant migraines. Barometric pressure changes are a known trigger for migraines, as are certain kinds of food. Migraine-Free Cooking was very helpful for us in knowing what to eliminate and then reintroduce.

Also, tea contains quite a lot of caffiene. Cutting back on the tea could help a lot.

All of my sympathy for having to deal with Kaiser. They are so horrible for anything that is the slightest bit out of standard procedure. Good luck.
posted by Ahniya at 9:47 PM on July 6, 2016 [1 favorite]

I agree with others saying it might all be migraines. I have had all kinds of different migraines throughout my life. The one thing that works for me is Maxalt. It has been a miracle drug for me whether it's a classic aura first migraine or the kind you are describing where you wake up in the middle of the headache. I have made the mistake of thinking it is not a migraine and have not taken the Maxalt and it just turns into a sinus-ee mess. I take the meds and it goes away.

I did not see in your post if you are taking any migraine meds. I also take verapamil which has lessened how many I have.

As far as seeing another Neurologist at Kaiser, I don't know why it would be an issue. Everyone is entitled to a second opinion or just changing doctors for no reason at all.
posted by cairnoflore at 10:58 PM on July 6, 2016 [1 favorite]

Migraines, facial migraines!!

I woke up with a headache every day for years and I was convinced it was allergies and/or sinus. It was neither of those things.

I went to my doc and asked for Beta Blockers and within one dose they were gone. Now I'm not on them any more and the headaches have not returned.

I also get the classical migraines and this was something different altogether, but still migraines.
posted by Youremyworld at 12:04 AM on July 7, 2016 [1 favorite]

All of this could be from the migraines - they can be so variable. For me the number one trigger is low blood sugar which it seems like might be an issue for you too. Hydration is number two. Getting them sorted can be a long road in terms of figuring out triggers and best treatments. You may have to be very persistent with doctors.
posted by mai at 7:35 AM on July 7, 2016 [1 favorite]

You don't mention whether you have had a dental check-up too. The impact of problem teeth is often underestimated.
posted by bluedora at 1:20 PM on July 7, 2016 [1 favorite]

Thyroid problems and migraines frequently occur together, and the former can exacerbate the latter, so you might want to bring the headaches up with the doctor who is treating you for Hashimoto's.
posted by yarntheory at 7:17 PM on July 7, 2016

I've tried 3 preventatives for chronic migraine, and they all made me tired/slow AF. I second that you may want to look into beta blockers if you do not have low blood pressure (I do, so according to my neuro they're a no-go). Try switching to herbal tea, too. Also, Imitrex is amazing and the only thing that helps my migraines BUT you only get 9 pills a month. If you take more, you can get rebound headaches.
posted by bookworm4125 at 11:45 PM on July 7, 2016

Response by poster: Hi everyone, thank you so much for your thoughtful and very helpful responses. There's so much good stuff here that responding to everyone would take a novel! But I'm going to explore many of these ideas and hopefully will start feeling better soon.
posted by imalaowai at 9:48 AM on July 8, 2016 [1 favorite]

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