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A sickness I can name

I have a cold and I’m rather enjoying it. I sneeze and people say “Bless you.” My throat is sore, so I take cough drops. When people see the wastebasket full of tissues, they know I have a cold. It’s visible and understandable. Everyone has had a cold. They know what that feels like. They know what to do. Take Vitamin C. Keep Kleenex handy. Cover your mouth when you sneeze. It will pass eventually.

It is not like my headache, which no one can see. They might notice the zoned out look in my eyes or notice me rub my temples, but otherwise my chronic pain is invisible. When I try to explain what is wrong with me, they don’t understand. They’ll say, “How are your headaches?” using the plural. They don’t get that the headache never goes away, that it’s just one headache, not many. They try to empathize, but they don’t really know what it’s like, and I’m thankful because I would not wish the experience on others. They can say “That must be awful,” but almost no one can say, “Oh, yeah, I had a headache for a couple years too.” It’s weird. It’s unusual. People don’t understand it. They don’t know what to do for it. Take an aspirin. Get acupuncture. Have you considered TMJ? It might be your vision. The chiropractor can fix you, I’m sure. Do you have a neurologist? No one knows what to do. No one knows how to cure me. There is no guarantee that it will pass eventually.

So even though I breathe through my mouth at night and awake to a dry tongue, I’m enjoying my cold. I’ll take my cough drops and I’ll keep my tissues close and eventually it will go away. I know this. I understand it. I can name it. I wish the same could be said of all things.

Chocolate & Vicodin: My Quest for Relief from the Headache that Wouldn't Go Away
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49 Comments

Debra • December 5, 2008 at 7:09 am

I hope you find a cure for your headaches soon. I don’t know what you’re going through, but my daughter does. She started having a headache in her freshman year in college that NEVER went away for almost a year. She went through all the tests, etc. and tons of pills to no avail. Through a new Dr. she takes a pill everyday that has stopped the never ending headache and now she has one a couple times a week. A ‘normal’ person would think weekly headaches were terrible, but she is so relieved. I hope you find relief soon, headaches are so dibilitating.

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Mrs. Thighs • December 5, 2008 at 7:34 am

I’m not going to pretend I understand what you’re going through, but I hope the headache eventually goes away and you can enjoy your life again. I’m very sorry to hear that you’re dealing with this.

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Niccole • December 5, 2008 at 8:13 am

My headaches have a name, chronic daily migraines and cluster headaches and I must say having a name isn’t all it’s cracked up to be. I hate the advice givers too, so I’ll just say that one of these days something you are doing will help.

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Ken • December 5, 2008 at 8:15 am

I had headaches like this for years and it turned out that my jaw was misaligned and I had some teeth that didnt touch teh nerve but was near it just enough to apply pressure and cause the headaches. I now have braces and they have went away after one month of slowing moving my teeth around. I am 41 so people stare at me with braces on… I’m also losing weight and you can see in my blog. I’m done 100 so far.. I love reading your blog.

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mrs darling • December 5, 2008 at 8:29 am

I know you hate people trying to cure you on your blog. Let me just say that I have never once tried to give you headache advice and Im not going to start now. Instead Im just going to tell you a little story I heard on the Medical Incredible Channel

A lady had a chronic headache for years. She did not have it as a child. It happened as an adult. Over several years it got so bad that she had to quit her job. She searched and searched for answers. Her life was being taken away from her by the headache. Somehow a doctor finally directed her to another doctor that was doing a cutting edge scientific surgery for people of extreme headaches. She wnet to him, had the surgery and upon opening her eyes in the recovery she knew the headaches were gone. She felt better in that moment than she had for years.

So what was wrong with her? Scientists and doctors have now discovered that when chronic headaches hit as an adult it is very often because of a heart defect. You see when are born we all have a hole in our heart,everyone of us. As we grow the hole closes. Adults who live with unexplained headaches have been found to be living with that hole in their heart. For some reason it didnt close when it was suppose to. They have discovered that all they have to do is go in and close that hole and patients are getting immediated relief from headaches they have had for years. The holw is closed through laporoscopy and is a miner operation as far as heart operations go.

They said if anyone watching the show is living with headaches and has exhausted all resources and baffled the doctors, they should see a cardiologist immediately and get 3 dimensional xrays of their heart. There is anextremely high liklihood that they will find the hole.

People dont have the headache when they’re little kids because the heart isnt big enough and they are not trying to pump as much blood through their bodies. It happens in adulthood.

I thought of you the entire way through the show. But now mind you Im not offering you advice. Im just telling you a story I heard. :)

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Charlie Hills • December 5, 2008 at 8:31 am

As the great John ‘Bluto’ Blutarsky once said, “My advice to you is to start drinking heavily.”

Listen to him. He’s in pre-med.

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Christina • December 5, 2008 at 8:55 am

I still think that you need a vacation to take away your headache for good! Now that you’re not getting the cut at work, maybe it’s something you can realistically consider.

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Lilbet • December 5, 2008 at 9:04 am

I know we emailed about my pseudotumor cerebri and that you’ve ruled that out. (You had a spinal tap, right?) I feel your pain. And I have to say, you described it so eloquently here.

Having an invisible illness is extremely challenging. My doctor told me to carry a cane for a while–my head explosions cause dizziness and that a cane could possibly help with the unsteadiness. I got so much attention for it. And sympathy. And understanding. And all I wanted to do was beat them over the head with my sparkly cane for not being more empathetic when I didn’t have it.

So dumb, that we humans need a visible sign that something is wrong. MOST chronic disease are invisible!!!

I used to get upset with people when they were offering suggestions. You have to look past the one millionth person who suggests going to a chiropractor (a route you’ve undoubtedly tried) and see that their heart is good. They mean well and want to help.

I almost went ballistic when someone told me they got migraines too. Not the same thing, honey. I too have had just one headache–for 8 years now. I can’t remember the last time I didn’t carry severe pain around with me. There’s a point, though, when you realize that the emotion these people bring out in you isn’t helpful anymore and you learn to let it go.

Milk that cold honey. Strangely, I feel better when I have a cold. That’s odd, but perhaps you feel the same. It’s like things free up a bit up there.

Take care. I will send up lots of positive vibes for you, prayers, whatever you believe in.

Bet

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Emily • December 5, 2008 at 9:13 am

I’m sorry your headache is still hanging around. I hope you are able to find a cure/remedy soon. I can tell it has been wearing on you and draining you. You’re right, it’s hard for someone outside to truely understand how much you are suffering. I doubt it will help, but I didn’t buy your book off Amazon last week. You are a wonderfully funny writer. Oh yeah, and I hope the pesky cold passes soon!

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Allison • December 5, 2008 at 9:21 am

I had unpredictable/undiagnosable health issues for all of 2007. Fortunately those subsided. But I can totally understand your relief at experiencing health issues that are identifiably/treatable. Isn’t it a strange situation when we get excited when we can name the current illness? Best of luck…

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PastaQueen • December 5, 2008 at 9:21 am

@Niccole – I hear cluster headaches are the worst. Good luck to you!

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Allison • December 5, 2008 at 9:21 am

I had unpredictable/undiagnosable health issues for all of 2007. Fortunately those subsided. But I can totally understand your relief at experiencing health issues that are identifiably/treatable. Isn’t it a strange situation when we get excited when we can name the current illness? Best of luck…

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Heather • December 5, 2008 at 9:30 am

You’re headache battle reminds me of something I heard on Atlanta radio about a woman who had chronic headaches caused by food allergies, but it took her years to get diagnosed. All this came about because she became addicted to painkillers and found out about the food allergies in her recovery process.

If you’re interested in hearing her story, go here:

http://www.q100atlanta.com/BertShow/tabid/227/Default.aspx

and scroll down to “Stacey Overcomes Painkiller Addiction”

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Nina • December 5, 2008 at 10:18 am

I do know what it’s like. I’ve had a headache for the past several months, but it’s coupled with nausea. Chiropractor did not, in fact, fix everything. And none of my doctors could, either. It sucks.

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shelley • December 5, 2008 at 10:49 am

I had a headache for a year and used to hate that question, too…some days I just wanted to scream “It’s still the SAME headache!!!” but that would have just made my head hurt worse. I really hope you find an answer soon. Oh, and happy cold…my grandmother used to say that a cold will go away in seven days or a week, take your pick. She was usually right! Oh, and cover your neck if you are coughing at night – another grandmother-ism.

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Sarah • December 5, 2008 at 11:12 am

Is the cold affecting the headache in any way? Sinus pressure from the cold making the headache worse? you poor thing…

feel pitied enough ?? :)

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BB • December 5, 2008 at 12:16 pm

Chronic pain is the worse! I’ve been suffering with chronic bladder pain-that’s fun (not) too! The doctor thinks it may be a bladder infection so you get RX’s over and over and over again until you hear the words “Well, you may have a chronic condition and you’ll just have to live with it!” GGgggrrrrr…..Luckily, I think I discovered that walnuts are the irritants to stay away from. I hope your cold goes away soon and the headache sooner!

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Julie Anne • December 5, 2008 at 12:42 pm

I suffered from a singular headache from the time that I was 15 until well after my 25th birthday. I honestly had no idea that other people lived without chronic pain and it was only after almost 10 years that I finally sought help. I have an idea of what you are going through and I know how isolating it can be. As a huge fan of your blog and book, I can only say that I hope you soon find the source of your pain and eliminate it. And in the interim, please know that there are some people out there that know what you are living through, even if they aren’t very close by.

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Marste • December 5, 2008 at 1:11 pm

Yeesh. I almost want to say congratulations on the cold and offer condolences on the continued headache. That seems weird, but sort of in keeping with the sentiments expressed in your post.

I will not offer any advice because I have NO idea what might fix your headache that you haven’t already tried. But I will continue to hope that something finally works.

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Yet Another Jenny • December 5, 2008 at 1:31 pm

You’ve captured a feeling I had during grad school, when my mental health was so out of whack that just getting to class felt like an accomplishment. The fact that I didn’t have a ready explanation for people just compounded all the emotional junk I was feeling. No real advice here, just empathy and well wishes.

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Lyn • December 5, 2008 at 1:42 pm

{{{PQ}}}

Wishing you well.

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Beth in STL • December 5, 2008 at 1:48 pm

I empathize. I had near-constant headaches from the age of 23 to 37; two years later, I still get bad headaches that can last three to five days at a stretch a few times a month. I don’t recommend my “solution” (radical hysterectomy plus blood pressure meds), but it’s nice to at least get a few breaks in the pain. After a while, I got so used to being in pain that if I had a pain-free day, I’d spend it thinking that I was missing something that I was supposed to be doing.

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Helen • December 5, 2008 at 2:24 pm

Sorry about the headache and the cold. Maybe the cold will take the headache away with it. There’s always hope, right?

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Beth • December 5, 2008 at 2:29 pm

Have you considered neuro and/or bio feedback? I am planning to start neuro feedback at the end of this year and am thinking that it will help Not having to take meds is a nice plus. I hope that you get over both your cold and your headache soon!

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v ictoria • December 5, 2008 at 2:35 pm

There are a lot of challenges in your situation. It’s really hard to communicate the experience of pain, even pain that has a visible source or is of the type that the other person has also experienced.

Another challenge is that people will tend to reject your pain. They don’t really want to know about blameless and insoluble misfortune. We live in a land of opportunity where we like to believe that life is what you make of it and you can be happy if you work hard and have a good outlook. People don’t want to believe that life can be random and unfair and bad things can fall on you out of the blue, that sometimes you’re helpless to remedy the situation.

This is why, I think, people so often talk about the necessity of a cheerful outlook, or “being a fighter,” to recovering from cancer. People say these things to reassure themselves that their own destinies are in their hands — that if they got the dreaded cancer diagnosis, they could will themselves better. This sort of talk is not only false, but hugely insulting to people who are losing their own cancer battle, or who have lost a loved one to the disease. It’s analogous to blaming women who are raped (“It wouldn’t happen to me because I wouldn’t wear a short skirt/ walk alone in that neighborhood/ go to his hotel room/ drink that much” etc.).

I think that also may be why, despite all your “no more advice!” requests, people can’t stop themselves from giving you advice. They just can’t tolerate the reality that sometimes, suffering happens, for no reason, and there’s nothing you can do about it. They cannot surrender their belief that there must be a solution to every problem. It’s one of those palliative lies that comforts them, but irritates the sufferer.

A friend of mine who was (mistakenly) diagnosed with terminal cancer as a teen told me that one of the hardest things about her time in the hospital was the cheeriness of her visitors; no one wanted to admit the (then apparent) reality that a 15 y.o. girl was dying, but it was a reality that she had to live with every day. They thought they were being nice to her by being all cheerful, but they just made her angy.

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Laura • December 5, 2008 at 3:09 pm

My husband gets migraines so intense, we’ve been to the ER a few times, but they always end. I cannot imagine what it must be like to have a headache that never goes away.

It sounds like you have all of the advice you can handle at the moment, so I’ll just tell you my positive thoughts go out to you. And I hope that your cold (understood and commiserated with as it is) will be over soon.

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Marla • December 5, 2008 at 4:36 pm

I have a friend who had the same never-go-away single headache – she went to dozens of doctors, tried Western and nontraditional medicines, nothing did any good. But then she was with her boyfriend in the car in one of those make-out places, and he was trying to get her in the mood and she wasn’t interested because of the incredible pain in her head, but then suddenly they heard this scratching noise, and when they got home there was A HOOK stuck on the car door….

Oh no wait, that’s a different story.

Sorry, I just want so much to be able to offer a miracle cure. Enjoy your cold.

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Ellen • December 5, 2008 at 4:47 pm

You are so right about not many people being able to say “Oh, yeah, I had a headache for a couple years too.” When I have a headache for a couple of DAYS it gets unusual reactions. Though I certainly cannot “feel your pain” regarding the chronic pain you are living with, I do get 1 day migraines a couple of times a month, even on a one-a-day preventive prescription (before I was getting full day migraines 2-3x/week, so this is better). I know what it is like to be living with that kind of pain for one day and I would not wish that upon anyone for any amount of time! Let alone days that turn into weeks that turn into months that….well, you get the idea, I know. So, I definitely cannot know what you are going through, but just know that we’re all sending positive thoughts your way and hoping that this situation changes for you :) :)

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Jen • December 5, 2008 at 7:08 pm

Hope that somehow a solution presents itself or that you find a way to manage the pain.

It didn’t sound like the chiropractor was helping much.

I have to say I love Marla’s comment.

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anji • December 5, 2008 at 7:26 pm

Amen sistah!

When i got hurt, no one could see the pain I felt (and feel 24/7, going on almost six years now)…

Sometimes I wished pain on them (the ones who were assholes to me)… one lady twisted her ankle and whined about it for weeks. This was after she talked about me sayin’ I was fakin’. That morning, I wished pain on her and haha, she hurt her foot. I laugh because, she deserved it.

My other co-worker though, got cancer. And, while it sucks he has cancer, I think he understands chronic pain now. I haven’t talked to either of them since I quit work four years ago almost…

It’s tough having an invisible ailment. No one understands and the next time someone tells me to get over it, I feel like punching them in the eye and telling them to get over it.

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Laura Brandon • December 5, 2008 at 11:49 pm

i’ve had a chronic headache before, but never for several months. it’s still not fun. i hate headaches more than any pain in the entire world. i don’t know how you are continuing to live your life. you have my sympathies. and no advice, because nothing works for me either.

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Barb • December 6, 2008 at 12:13 am

I started getting chronic back pain when I was 21… your headaches do sound worse (it’s in your head! Where you think! and do so much!) so I can only wish the best for you.

Four years (and like you, bazillions of lukewarm solutions) later I found something that worked for me, a very difficult solution, but one that worked. So, keep doing your thing, with your open and smart (but hurting!) mind and I hope you will get as lucky as I have been.

Colds are super fun–you have a legit excuse to rest! Something we rarely get, and certainly don’t get for feeling down or worn-out. Take care!

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sara • December 6, 2008 at 2:56 am

I started getting cluster headaches when I was 4. i get them atleast 4 days out of 7. At the age of 24 I am just now finding out I have an auto-immune disease causing them. I hate how everyone thinks they understand as well. try raising and infant while having one of these headaches….it’s nearly impossible.

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budicca • December 6, 2008 at 4:42 am

@mrs darling –

PQ,

You have a name for your tribe now:

People of Extreme Headaches.

I’m almost ashamed that made me laugh.

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MizFit • December 6, 2008 at 6:43 am

Im with you on the I CAN NAME IT IT WILL GO AWAY sentiment.

is that a uniquely american thing? the feeling better about something if it HAS a name?

I have a friend struggling with a rareish illness and she was kind of thrilled when she found out there was a NAME for what she had….felt as though that was half the battle: IDENTIFYING.

feel better,

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bisous • December 6, 2008 at 8:07 am

Hi PQ.

I’m a doctor so it is killing me not to give unsolicited advice (and I have plenty rolling around up in my head), but I also know that sometimes the best thing is not just do something, stand there and listen. I’m so sorry you’ve gone through such a struggle, and I hope your pain finds an end. If you are interested, I wrote a book with a professor at my medical school about dealing with chronic symptoms. I would be happy to send you a copy. Some of it will not apply to you at all, but some of it might have some good ideas to help with coping.

Anyway, please email me if you are interested.

All best,

Bisous

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Kris • December 6, 2008 at 9:37 am

I know you have probably tried everything and I can only imagine your pain.

Two things that, at the very least, are worth looking into…(if you haven’t already)

Candida

Tyramines

Re: candida, given your previous diet, your body might just be fighting a massive sugar addiction.

Re: tyramines, tyramines cause the blood vessels to dilate which can produce headaches.

Like I said, you’ve probably tried everything, but reading up on either and adding/removing foods from your diet is cheaper and easier than medication…

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Sharon • December 6, 2008 at 11:18 am

I hear ya’

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Heather E • December 7, 2008 at 2:23 am

I feel your pain to an extent, well, not your exact pain but my own version of your pain. I started getting completely debilitating “migraines” 19 years ago. They or it has never stopped, just varied in intensity. There are times when I will wake from a deep sleep in tears and screams with pain so intense that all I can do is have some one drive me to the ER for a shot of heavy duty narcotics to knock me out until it subsides into a more bearable pain level.

Most of the time I just have a nagging level 2-3 pain on the right side of my head. That is what I live with daily. It is worse when the nausea, photophobia, extreme sensitivity to sound and smells comes into play. I drive my family and friends crazy complaining about “phantom foul odors” that no one else can smell.

The people I work with think I am either crazy, a drug addict or a faker.

I have tried chiropractic, botox, every pill known to man, homeopathic remedies, altering my diet, I have lost 120 lbs, cut out caffeine, added caffeine in moderation, cut out sugar, ARRGH!!

I feel you. I wish you luck and am there to bitch about it if you need me.

Now I must go search for that horrible smell, I am sure a cat must have used a litter box somewhere. Super sonic migraine nose always knows.

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soorya • December 7, 2008 at 10:37 am

I had a consistent, horrible headache for 8 months. I took Topamax which ruined my life and affected my heart. After I detoxed off of that, an x-ray of my neck showed that muscle spasms pushed the curve of my neck the “wrong” way. I started taking muscle relaxers and went to physical therapy and it helped reduce the pain. Oh, they also found a brain tumor that “wasn’t a big deal” (What!?). I went on a raw food cleanse and I felt SO FREE. Six months later, the tumor disintegrated and my very bad headache is now just dull.

My ortho doctor said that stress = muscle spasms in my neck/shoulders = radiating pain to my skull head. (why headache medicines didn’t work because it was muscolo-skeletal.)

GOOD LUCK PQ!!!

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Susan • December 7, 2008 at 12:01 pm

I’m sorry.

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Susan • December 7, 2008 at 12:59 pm

Jennette, I just finished your book and absolutely loved it! You’re as witty as you are resourceful, and your candor and determination have prompted me to make Attempt no. 1,353,566 at losing my 60 pounds.

I’m so sorry to hear about these chronic headaches and hope they depart pronto! I would imagine they feel disabling.

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gill • December 7, 2008 at 6:53 pm

wish I could pop off my head like a barbie and swap with you for a bit. Hope they find a solution soon.

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AfterGirl • December 8, 2008 at 1:34 pm

This is not advice. I had miagraines every morning when I woke up for over a year. I realize this was not a never ending headache but none the less… Anyway, I was tested for sleep apnea and found out that I stopped breathing many many times an hour and my oxygen levels went down to a low of 70 something percent. After I got a cpap machine my headaches stopped. Lack of oxygen does strange things to your brain.

I pray for you to discover the cause/cure for your head.

God Bless,

AfterGirl

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Emily • December 10, 2008 at 12:03 pm

I totally know what you mean. I had chronic back pain for about 6 months that just started out of nowhere. It did have a name – sciatica, not just for old people! – but since I didn’t have an injury it was hard for my friends to understand. Nobody ever said “oh get over it,” but I definitely got the impression that people thought I was playing up the pain. I still remember my roommate looking at me like I was crazy one day when I literally could not figure out a way to get off the floor. So basically, I get it, and I’m sorry that you’re going through this.

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Tricia • December 19, 2008 at 12:18 pm

Actually, I can say that, I DID have a headache for a couple of years too – well more like 6 years. For the last year or two I still get headaches all the time (ironically I have one now), once or twice a week, but it is a HUGE difference and I am enjoying my freedom immensely. I wish the same thing on you someday!

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Kim • December 30, 2008 at 9:27 am

Well, crap–as a first time blogger, I posted a comment about this on your Part 4 of the headache that never went away. Then I noticed that the last blog on that page was in September. I need to learn how this thing works…………

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Tonya • January 5, 2009 at 6:33 pm

PQ, sorry this comment is late and double sorry that it is a suggestion for helping your headache, but I completely know what you mean about having a headache for months — I did too. My neurologist took me off caffiene and prescribed Pamelor at night. It worked like a dream. I’ve never felt better. Apparently this is an anti-depressant, but it used off label to treat stress headaches. It is worth a shot if you haven’t already tried it!

Good luck.

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Rosie • January 7, 2009 at 3:13 am

So, did you try the Chiropractor?

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Comments are now closed on all PastaQueen entries. The blog is an archive only so I don't have to deal with spammers. For fresh discussions please visit my new blog JenFul.

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Jennette Fulda tells stories to the Internet about her life as a smartass, writer, weight-loss inspiration, chronic headache sufferer, and overall nice person (who is silently judging you). She does this at JenFul now, but you can still have fun perusing her past here.

Disclaimer: I am not responsible for keyboards ruined by coffee spit-takes or forehead wrinkles caused by deep thought.

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