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The headache that never went away: Part 2 – My medicine cabinet looks like a pharmacy

Yesterday, I was all, “Hey, by the way, did I mention I’ve been in chronic pain for three months? I didn’t? Whoopsies!” For those of you sneaking in your blog reading at work, I shall summarize: my head has hurt constantly since February 18th. I was going to list everything I’ve done or considered here, but it got insanely long. (I have a headache notebook now just so I can keep track of all the doctor contact information and record all the drugs I’ve introduced into my bloodstream.) So today I’ll just cover treatments I’ve tried and tests I’ve taken. Tomorrow I’ll go over other possible causes/treatments I’ve considered and am still considering. I’m leaving out some of the specifics because I have privacy concerns and I don’t want anything to come back to bite me in the ass, even if I can’t completely visualize how it might do so right now.

Over-the-counter painkillers

Like most people, I didn’t immediately reach for the intravenous drugs, I reached for my medicine cabinet. During the first week I tried ibuprofen, acetaminophen, naproxen, and aspirin (not all at once). These are also know as Advil, Tylenol, Aleve, and um, aspirin. I also tried different combinations and potencies of these, like Excedrin Tension Headache and Tylenol Migraine Pain Relief. They didn’t do shit.

Allergies

Okay, so maybe it’s allergies? I tried several cold/sinus/flu medications and even went up to the pharmacy counter to get the stuff you can make crystal meth out of. I snorted God-knows-what up my nostrils with a nasal spray. My doctor gave me a ton of Allegra-D. All the pseudoephedrine, doxylamine succinate, dextromethorphan hydobromide, oxymetazoline, and fexofenadine did nothing but make me wonder how they come up with these wacky names for drugs.

Migraine abortives

Somewhere before or after all that, I went to the doctor and got a shot of Toradol (ketorlac tromethamine), which is supposed to stop migraines. They may as well have injected me with saline. I also tried a pill called Imitrex (sumatriptan) which is supposed to abort a migraine as it’s coming on. Again, nothing. My head still hurt. I have been on a beta blocker for at least 5 years as a headache preventative. We tried upping my dosage on that, and again, nada.

Sinus infection

Well, the pain seemed to be in my sinuses, so could it be a sinus infection? I did a round of antibiotics and again, I was still in pain. I went in for a CT scan of my sinuses and that too was clear. Getting the CT was like riding a really weird ride at the amusement park. I got to lay down on a bench that slid in and out of a spiraling circle. Too bad there weren’t any cotton candy vendors in the lobby.

Caffeine

Perhaps it’s caffeine? God knows I drink a lot of sodas, so I started drinking caffeine-free pop and switched my coffee to decaf (which I know still has some caffeine, but it’s not that much). This seemed to help a little, but I also wanted to take a nap on my keyboard during the day. Soooo…I got a cup of coffee and then I bought a caffeinated soda and I was back on the stuff again. But later the pain was getting to me, so I cut back again. For awhile. And then I started up again. Right now I’ve gone off of it again, but damn, it’s hard. When you go off caffeine for two weeks and then you drink a cup of coffee, OH MY GOD, I imagine that’s what doing crack must feel like.

MRI

Next up was an MRI to rule out anything serious. Honestly, I never thought it was a brain tumor (and the radiologist agreed). Brain tumors usually present with seizures and speech problems, none of which I was having. MRI’s are very, very expensive. (Think over $3000.) The MRI was recommended at the beginning of April. Due to insurance stuff, it was going to be much cheaper to have the MRI in May. So, I decided to wait it out. I wasn’t counting down to my half-marathon or my book release party at the beginning of May, I was counting down to my MRI. Until a week and a half later when I was lying on my couch in pain, amazed at how quickly my life had completely unravelled, and decided the health of my bank account was less important than my own health. (Have you bought your book yet? Support my migraine fund!)

When I scheduled the MRI, they asked me if I weighed over 350 pounds and I was so grateful that I was able to say “No.” Otherwise I wouldn’t have fit in the machine, which is very LOUD and strangely musically rhythmic. I’m surprised STOMP hasn’t used an MRI machine in their stage performance. The machine is probably too expensive for theatre people to afford. Also, my veins are very tiny and tend to roll around, so I spent 20 minutes in the machine and 20 minutes getting stuck 4 times when the nurse tried to inject me with contrast material.

Neurosurgeon

After the MRI, there was one small abnormality, so I saw a neurosurgeon who told me I just had a cluster of veins in one spot that is uncommon in general, but normal for me. No action was required and it wasn’t causing my headache. We probably would never have known about it unless I’d had the MRI for other reasons. He also did several tests that involved me touching my nose with one hand and walking across the room, which made me wonder if he was testing my brain or checking for a DUI.

Massage

My mom’s friend is a massage therapist and she kindly offered to give me a massage. The massage felt nice and I was very grateful, but the headache persisted. She also tried working a few release points that are supposed to relieve headache. This is not what you think of when you think of massage. This stuff hurts. But it hurts in sort of a good way. Sadly, it didn’t work.

Intravenous drugs

At this point, I finally started seeing a neurologist who specializes in headaches. His office is darkly lit and quiet and it took me at least 20 minutes to fill out all the forms detailing all the crap I’ve tried to get rid of this damn headache. He prescribed an intravenous drug treatment to try to abort the headache. Two weeks later, after the insurance and scheduling got sorted out (not like this was urgent or anything. I’ve only been in pain for THREE MONTHS.) a nurse came to my apartment, stuck an IV in my arm, shot me full of a drug known to stop headaches and taught me how to do two more nights of treatment. Again, this did absolutely nothing except turn me into a person who stores heparin in the bottom of her fridge, right on top of the eggs. Blood thinner omelet, anyone?

And that, my friends, brings us up to present day. God only knows if my headache will ever go away. As I write this, it’s not too bad. But I just did a whole bunch of nothing over Memorial Day weekend. I don’t know how I’ll feel when life resumes and I actually have to do stuff.

Tomorrow: a list of other causes I’ve considered and treatments I may try because I’m getting desperate. We’ll cover eye strain, teeth clenching, stress and more!

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

Mindy • May 28, 2008 at 7:42 am

My heart breaks for you my friend. How frustrating this must be. I will keep good thoughts going that you will find an answer and, more importantly, RELIEF!

Hugs to you.

P.S. I’m the Mindy that shares your birthday!

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J. • May 28, 2008 at 8:06 am

How about some magnesium? I have read some research that it can help with headaches. If you decide to try it, get some magnesium citrate or glycinate (not oxide – not absorbed as well as the others). Start with 400 mg split up over the day and see how it goes. Too much magnesium at once will cause faster bowel movements. You can get a blood test to determine whether you are deficient or not. Doctor’s can also give you an IV.

http://www.ncbi.nlm.nih.gov/pubmed/9523054?dopt=Abstract

I didn’t realize I was deficient in magnesium until I was put on an IV drip for preterm labor. While I was on it, my eczema went away completely.

Good luck!

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Jen • May 28, 2008 at 8:14 am

Man! I’m sorry to hear about your sitch. I get few migraines but they stop me in my tracks…I can only imagine having to function daily with a headache over and over again. My chiropractor has helped me with my headache issues, along with drinking more water than caffeine. Those things work for me…but when they don’t, I need my icepacks and my shades drawn.

Good luck to you!

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Laine • May 28, 2008 at 8:21 am

I had very good result with acupuncture for my headaches. And my sinus issues.

I hope you find something that helps you.

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jaime • May 28, 2008 at 8:22 am

I’m probably late to the party, but the last persistent and awful headache I had turned out to be an issue with my neck, and a couple of months at the chiropractor fixed me right up.

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Helen • May 28, 2008 at 8:27 am

You poor thing. My head started hurting just reading all that. My first thought was “she hasn’t mentioned going to a chiropractor yet” but since I won’t go to them, I can’t very well recommend that can I? I am going to hold you in the light in hopes of you getting clarity about what to do and possibly even healing!

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Becca • May 28, 2008 at 8:38 am

First – unqualified sympathy…. I’m so sorry. Chronic and unexplained pain just stinks. And trying multiple things that don’t work is probably like trying multiple diets that just make you gain weight.

You didn’t say if we could have permission to make annoying suggestions yet – but I’ll take the risk of at least saying “amen” to two of the previous comments. Before I read the comments I was going to say “Try magnesium supplements and accupuncture”. But since others beat me to the punch, I’ll just say, “yes indeed…try that”.

I’m not normally a hippie granola naturalist – but every once in a while if all the medical stuff doesn’t work – it’s worth a try. There’s a lady who runs a health food store on the north side who has an uncanny ability to figure out weird aches and pains and recommend stuff that works. I’ll e-mail you the store name to protect all parties.

Good luck, dear. We all feel for you.

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Karen • May 28, 2008 at 8:39 am

Bless your heart! My Sister in law just had surgery for problem discs at the top of her spine – she was having headaches every day -seems the pain was causing her to tense every muscle in her shoulders and neck which was causing tension headaches. Oddly enough the problem may not originate in the head. Shoulder bone connected to the neck bone, etc… Good luck getting some relief. Oh, since the surgery, the headaches are gone.

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vivi • May 28, 2008 at 9:11 am

Hello PQ! I had headaches, I got an MRI done, they found a tumor (lucky you!), they removed it (I’m not goint into detail) and while I was in the hospital recovering I had the most amazing headache ever. Painkillers, more painkillers, drugs, in a pill, in drops, intravenous… whatever they tried… nothing.. it just didn’t go away… I also got prescription for massages every day because I had a stiff neck… All kind of studies done, just like you. Not a single doctor could guess why I was in such pain. Sometimes I couldn’t do anything but crying. Headache, headache, headache… and one morning it was over. Nothing. Gone. Forever.

I know it is very frustrating but don’t lose hope. They’ve looked through all possible reasons and don’t find any. Then it might just go away, quietly, as it came. I hope it’ll be soon!!

Good luck.

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wilma • May 28, 2008 at 9:22 am

hey pq, headaches are something i suffer from regularly, as well as migraines. they are evil. and there is nothing so energy draining as a constant, persistant headache. fyi–my neurologist sent me to a neuro-opthamologist (sp?) to see if anything funky was going on with my eyes (nothing, except that the drops they put in my eyes to dilate them caused a nasty headache for the next two days–and right in the middle of some very stressful & busy work days…ugh). one thing that the neurologist has put me on is amitriptalin (sp?), instead of a beta blocker, to try to prevent some headaches. i’m only on 10 mg per day (it’s also used to treat depression, but at much higher doses). i think it helps somewhat. though i still have headaches almost daily, i think that the migraines come slightly less often, and when i do get them, they last less time (say, 8 h instead of 2-3 days), and are sometimes less severe (ie, little to no vomitting from the pain). anyway…good luck, it all really sucks.

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Emily • May 28, 2008 at 9:25 am

Sorry to hear that – I hope you can figure it out!

Have your doctors suggested not drinking all the diet soda? I know it gives me terrible headaches.

(Sorry, I know you didn’t want suggestions, but I couldn’t help myself.)

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Lynette • May 28, 2008 at 9:35 am

I’m so sorry to hear that you have having such a big headache problem. I hope that you can find something to make you feel better soon! We need out Pasta Queen healthy!!!!

I don’t know if anyone else has mentioned this but do you have old silver fillings? Those may be causing your headaches. I had mine removed about 5 years ago for that very reason. Something about the silver leeching out and getting into the blood stream blah blah blah and causing headaches.

Also, Do you grind your teeth in your sleep or during the day? Again, another headache cause. I now have to wear a mouth guard when I sleep and it is helping. It’s not real sexy lookin’ but hey, it works!

Just my $.02 worth… :) Take care!!!!!

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Marilyn • May 28, 2008 at 9:42 am

One word: Naturopath!

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Melanie • May 28, 2008 at 9:43 am

I have no great wisdom to offer, I just wanted to say how sorry I am that you are suffering in this way and how much I hope that you can find relief quickly and with as little further expense as possible :)

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valerie • May 28, 2008 at 9:57 am

Hey, I’m not sure if you want suggestions yet (or ever), so I’ll just say – I’m sorry you’re in pain. All my best wishes that you get relief soon.

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Susan • May 28, 2008 at 10:10 am

Hello J,

I am a nurse case manager and have a number of patients with chronic pain. You still have choices. I’m sure you are considering acupuncture, chiropractic and natural herbs. I’m not big on the herbs, but the other two can help. If that doesn’t help, I would suggest a rehab for chronic pain sufferers where they teach you how to live with the pain. If you are at all addicted to your other meds, then a short term detox program that specializes in pain management (not for drug abusers)should be your first stop, but it doesn’t sound as if you’re on any big time narcs. There are many doctors that specialize in pain management, but I am not a big proponent of them because they are a short term solution to a long term problem. I wish you luck and hope you find help soon.

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PrettyInPink • May 28, 2008 at 10:12 am

I hate to even bring this up, but I’ve had a few migraines in my day and I know how debilitating they can be. I can hardly imagine having a headache every day for 3 months on end. Anyhow, just this weekend I was watching Mystery Diagnosis on Discovery Health (I know, I know, but bear with me). The episode was on a woman who had a headache for several months that wouldn’t go away (it was the second half hour of the program, the first was on a baby). Anyhow, turns out we are all born with these two little holes in our heart. These holes are vital while in the womb for the transfer of nutrients, etc. between mother and fetus. But soon after birth the holes close up. Well, in this particular case, the holes didn’t close up and, believe it or not, that was causing the woman’s excruciating, daily headaches. Basically, they just had to stitch up the holes and she noticed an immediate lack of a headache. I guess that goes to show that (as several posters have mentioned) headache pain does not all originate from the head. I hope you find the answer to this problem very quickly PQ. Good luck.

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Tracey • May 28, 2008 at 10:16 am

I know you don’t want to be overwhelmed with everybody’s suggestions, but here I am going to give you one anyway. I had symptoms almost exactly like yours in college to the point I had to take a medical withdrawal from the semester because I couldn’t concentrate on anything.

After 4 months or so, the doctor put my on a medicine primarily used for hyptertension (although I didn’t have that), but also was found to be useful for cluster headaches (combination tension/migraine headaches).

He said it would take about 3 months, and fortunately, it started working after about 1 month, and I’ve never had them again (12 years), although I would go back on it in a heartbeat if they came back.

The medicine’s name is Inderal (here’s a link to common indications, shows used for migraine treatment) http://www.rxlist.com/cgi/generic/propran_ids.htm

Good luck to you, and I am hoping you find relief soon.

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Riley & Tiki's Mom • May 28, 2008 at 10:46 am

You mentioned being on beta blockers to prevent headaches. I was on atenolol (you may be on a different beta blocker) for about 8 months and it gave me headaches that would last for days. I feel much better on my new blood pressure medication. I only have headaches now if my blodd pressure is too high or I am dehydrated.

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Riley & Tiki's Mom • May 28, 2008 at 10:46 am

You mentioned being on beta blockers to prevent headaches. I was on atenolol (you may be on a different beta blocker) for about 8 months and it gave me headaches that would last for days. I feel much better on my new blood pressure medication. I only have headaches now if my blodd pressure is too high or I am dehydrated.

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Riley & Tiki's Mom • May 28, 2008 at 10:46 am

You mentioned being on beta blockers to prevent headaches. I was on atenolol (you may be on a different beta blocker) for about 8 months and it gave me headaches that would last for days. I feel much better on my new blood pressure medication. I only have headaches now if my blodd pressure is too high or I am dehydrated.

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Riley & Tiki's Mom • May 28, 2008 at 10:46 am

You mentioned being on beta blockers to prevent headaches. I was on atenolol (you may be on a different beta blocker) for about 8 months and it gave me headaches that would last for days. I feel much better on my new blood pressure medication. I only have headaches now if my blodd pressure is too high or I am dehydrated.

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Riley & Tiki's Mom • May 28, 2008 at 10:46 am

You mentioned being on beta blockers to prevent headaches. I was on atenolol (you may be on a different beta blocker) for about 8 months and it gave me headaches that would last for days. I feel much better on my new blood pressure medication. I only have headaches now if my blodd pressure is too high or I am dehydrated.

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Riley & Tiki's Mom • May 28, 2008 at 10:46 am

You mentioned being on beta blockers to prevent headaches. I was on atenolol (you may be on a different beta blocker) for about 8 months and it gave me headaches that would last for days. I feel much better on my new blood pressure medication. I only have headaches now if my blodd pressure is too high or I am dehydrated.

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Riley & Tiki's Mom • May 28, 2008 at 10:46 am

You mentioned being on beta blockers to prevent headaches. I was on atenolol (you may be on a different beta blocker) for about 8 months and it gave me headaches that would last for days. I feel much better on my new blood pressure medication. I only have headaches now if my blodd pressure is too high or I am dehydrated.

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Lora • May 28, 2008 at 10:48 am

I know your pain, PQ, and you have my sympathy and empathy. I had tried numerous pharmaceutical options as well and none of them worked, or at least not for more than a few days. What finally did it for me was the chiropractor. It took about three visits and suddenly one day I realized the headache was gone. I now see my chiropractor regularly and have not had this same type of headache again in about 5 years. I love my chiropractor!

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deanna • May 28, 2008 at 10:58 am

that freaking sucks. hope something works sooner than later. be well.

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hopefulloser • May 28, 2008 at 11:05 am

I just had to chime in on your coffee comment, I KNOW! Coffee can be like crack (if crack is the best thing in the whole world) when you’ve gone off it and then back on!

Wishing you best of luck on a cure.

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emi • May 28, 2008 at 11:05 am

I know you don’t want a bunch of suggestions . . . so that’s why I’m not going to give you any :)

But man, that SUCKS. Good luck figuring it out and stopping the pain.

(also? I bought your book. AWESOME!)

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Cc • May 28, 2008 at 11:28 am

Hi, I just discovered your blog yesterday. I’m so so sorry to hear about the headaches.

Happened to me for a few months and it was totally exhausting. In my case it turned out to be nuts. I cut nuts out of my diet and the headaches went away. A friend of mine also suffers from terrible migraines and has found the only relief to be regular acupuncture-although it seems to work better preventively than as a cure. Best of luck, I hope you wake up one day soon and your head suddenly feels like a weight has been lifted.

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Catherine • May 28, 2008 at 11:33 am

Have you ever read All in My Head: An Epic Quest to Cure an Unrelenting, Totally Unreasonable, and Only Slightly Enlightening Headache ? Her struggles sound like yours- she had a headache for years and went through a lot trying to figure out how to fix it. It’s a good read! Sorry for your troubles. I’m a baby when I have a headache. I can’t imagine an unrelenting one.

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Pam • May 28, 2008 at 11:46 am

Ugh. I’m getting a headache just thinking about you.

Maybe acupuncture would help? Also, instead of coffee, try green tea for the caffeine. At least it is good for you.

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MaryK • May 28, 2008 at 11:53 am

Another suggestion, if you can stand it: Imitrex did nothing for me, but there’s a wonderful pill called Maxalt that has been able to stop my migraines in their tracks. It’s wicked expensive (something like $20/pill) but it’s been a lifesaver for me.

Hugs to you, PQ!

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Robin K • May 28, 2008 at 12:06 pm

Hi! Well, I hate to be another one with a cure but if I had a chronic or severe headache this is what I would do for myself and I would be convinced it would work. This has a 98% cure rate and has been tested by a physician Dr. Fuhrman on the East Coast. In Dr. Fuhrman’s book Eat to Live, which you can find at most bookstores in the diet section, he talks about many things, including a special “headache” diet. Don’t worry, it’s a very healthy vegetarian diet of sorts and allows no salt. But there’s nothing strange about it–just SUPER healthy. And I have read many many reports that it works! Good luck finding the book and follow that diet and I am convinced that headache will go!

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jae • May 28, 2008 at 12:18 pm

I’m sorry you’re in such pain. I’ve had my bouts with migrains but for three months? I can’t even imagine. I hope something works soon. ~j

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Marianne • May 28, 2008 at 12:39 pm

I’m so sorry you’re in pain and having to jump through all these hoops. I hope you find a solution with your doctors soon.

I think it’s admirable that you are opening up about this, especially considering all the advice/assvice that gets thrown around on the net. Your transparency about your journey is really refreshing.

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Jennifer • May 28, 2008 at 12:45 pm

Wow, so depressing to hear all of the people who have/continue to suffer with headaches! I also have a history with migraines in particular where I loose my vision (almost like a mini-seizure) that lasts about 1/2 hour followed by a hit by a mack truck headache. No tests could find anything conclusive triggering mine, but I did. It was chocolate. Something in the weight loss bars/shakes I was drinking, or even choc chips/icing, ice cream, anything laced with chocolate. I stopped eating it for a while and now don’t seem to have any effects from it. But I do keep it in moderation. I really hope you find out a way to alleviate the symptoms, or better yet they just stop. BTW, maxalt doesn’t do $hit for me in the way of stopping headaches. It makes me nauseated and I nearly pass out into sleep. Best of luck-how unfair to be dealing with this at such an UP part of your life.

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Mom • May 28, 2008 at 12:46 pm

Jennette checked it out of the library and I am reading it for her. I get to give her a book report! She has a lot going on and is having trouble focusing; therefore I am giving her the highlights. So far it is a good read.

Jennette’s Mom

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tigerlilly • May 28, 2008 at 12:58 pm

I feel your pain… I’ve been suffering with headaches and migranes for about 5 years. I’ve tried Chiropractors, MRI’s, prescription drugs, OTC drugs, and reducing caffine, but nothing has helped. I still have at least 2 headaches a week, and at least 2 migranes a month. People keep suggesting accupuncture and massage therapy, but I haven’t tried it (probably not covered by health insurance anyway). One thing I am going to try is being tested for food allergies, but I’m pretty sure that won’t turn up anything. Another thing I’m going to try is Yoga and having a VERY strict bedtime rutine. Good luck to you (and me).

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scone • May 28, 2008 at 1:01 pm

Oh, honey, I’m so very sorry. Virtual hugs.

As I’m sure you know, pain of this magnitude can sometimes lead to severe depression and anxiety attacks. I don’t mean to frighten you, but to be blunt, sufferers sometimes commit suicide. Please be careful, dear.

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G.G. • May 28, 2008 at 1:25 pm

Well, I have to say I admire how tough you are. More than twenty-four hours of pain and I’m whimpering like a baby to anyone who can hear.

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Kristine • May 28, 2008 at 1:31 pm

I’m sure you’re covering all your bases, but is there anything strange with your monthly cycles? There are a lot of female issues that can cause severe, persistent migraine headaches. I have Endometriosis and PCOS and my life is basically day after day debilitating headaches that NO drugs have ever fixed. Sometimes I can sleep them off for a day or two, but they always return. Just wanted to throw another avenue to check into the mix. Good luck! I know how bad it sucks.

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Jen • May 28, 2008 at 1:42 pm

Maybe you’re going through fat withdrawal…

Seriously, sorry to hear about the pain, and I hope that sooner or later you stumble upon the right treatment and then tell us all what it was.

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Leah • May 28, 2008 at 1:45 pm

Oh, Jennette, I am so very sorry! I have fibromyalgia and a host of chronic illness/pain issues, so I really do “feel your pain” har har har.

Anyway, I hope you find something that helps soon. Pain is so all-encompassing. Like someone wise said above, take care of yourself mentally and emotionally, too – that’s just as important as your physical body. Chronic pain sucks.

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SuzyQ • May 28, 2008 at 1:46 pm

Ow! Suddenly a twin growing out of your forehead doesn’t sound so bad! Maybe a head-ectomy? I’m so sorry you hurt and hurt and hurt.

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victoria • May 28, 2008 at 1:56 pm

Oh, man. That really, really sucks. I’m sorry, PQ. I hope you get better soon.,

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Shawna • May 28, 2008 at 2:33 pm

I’m sorry to hear about your headache. It’s funny that you mention Allegra though. I had a similar chronic headache years ago. The headache didn’t start because of the Allegra, but the chronic part was being caused by the Allegra. My doctor continues to think it’s a miracle drug, and I’ve never met anyone who had a similar reaction to it. However, for me it made my life a living nightmare. Headache, sensitivity to light, motion sickness. Within a day or two after I stopped taking it, I was feeling normal again. Probably it’s not helpful to you, but who knows.

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Karen • May 28, 2008 at 2:48 pm

Just reading some of your past posts and someone mentioned that aspertame can cause headaches – so right! Also wine. I don’t know if you drink wine very often, but it and other alcohols can cause major headaches. Sometimes a good place to start is diet – I see you have done that, but I don’t recall if you cut out the artificial sweetener. I don’t think splenda has that effect but other ones do.

I know sugar and splenda cause depression in my father so not sure about headache. Again, good luck.

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Christina • May 28, 2008 at 2:53 pm

You are such a nice mom! Best of luck to you and Jennette in getting this headache gone quickly!

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Rhonda • May 28, 2008 at 3:09 pm

Adding my cyber hugs to you. Constant pain is absolutely horrid on so many fronts. All of us are hoping you find the cause and cure soon. Bless you.

I received your signed (!) book. Excellent job. I really enjoyed reading it.

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cheryl • May 28, 2008 at 3:21 pm

I just wanted to tell you that I really enjoyed reading your new book. I am temporarily out of work on medical leave, due to having three discs remove from my neck, so I really understand the chronic pain. I was really hoping that the surgery would do the trick, but so far, I am still on pain meds.

Still, I found your book very witty, insightful and hopeful. It was just so much more than one of those one page stories in Shape Magazine. I will recommend this reading to my friends who stuggle with weight.

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Linda • May 28, 2008 at 3:44 pm

My heart goes out to you Jennette! I remember when I had plantar faciatis (sp)for 3 months, I was ready for the doctor to cut my foot off before she finally sent me to physical therapy where it was diagnosed correctly. Then about 4 years ago, I woke up with sciatica pain and sufferered for 3 months until I found a web-site that gave me the “inch worm” exercise. I woke up pain free the next day and only occassionally have sciatic pain if I sit too long in a bucket seat or lounge chair. So I know how constant pain can totally drain a person.

I have now found a Quantum Touch person who I go to whenever I have any type of pain. I don’t know how it works; but it certainly has worked for me. She even was able to restore my voice after I permanently injured it by yelling through laryngitis. I went to my ear/nose/throat guy to have my throat scoped to be sure it wasn’t anything serious and it was fine. After 6 months, I was depressed because I couldn’t sing and I was struggling so with my voice. A friend knew the Quantum Touch person and suggested I give it a try. I’ve never regretted my decision to go. I still go to my medical doctor but when it’s a muscle strain or I get a cold and my voice immediately goes; I get to her right away.

I’ve been reading your archives for several weeks now and have found them to be very inspiring! Linda

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Riley & Tiki's Mom • May 28, 2008 at 10:46 am

You mentioned being on beta blockers to prevent headaches. I was on atenolol (you may be on a different beta blocker) for about 8 months and it gave me headaches that would last for days. I feel much better on my new blood pressure medication. I only have headaches now if my blodd pressure is too high or I am dehydrated.

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Juliet • May 28, 2008 at 4:15 pm

Hi Jennette. I can’t wait to order the book! I’m very sorry about your head, I know exactly what you are going through. I would like to second what Kristine said about hormones – I too have PCOS and migraines are a part of my daily life. I find that I get a head-smashing-please-shoot-me-if-you-loved-me-you-would-bash-my-brains-out-with-a-hammer-headache during that ONE week of the month. It may be something to look in to. Best of luck and I am praying you are relieved very soon!

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Julie Anne • May 28, 2008 at 4:17 pm

I’m sorry to hear that you’ve been suffering from chronic pain for the last three months! I have dealt with daily headaches for most of my life and just recently started taking Elavil, which is an old-school antidepressant that also helps with chronic pain. It has basically changed my life, so maybe you could discuss that with your doctor. I also just finished reading “All in My Head” by Paula Kamen, a woman who has had chronic headache for something like 10 years. It was an illuminating read from all angles. Maybe you or your Mom could check that out and see if it offers any guidance. I wish you the best of luck with this. When my headaches were at their worst, I felt truly mentally ill. I hope it doesn’t get that bad for you.

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Laura Brandon • May 28, 2008 at 4:27 pm

how are you still sane? if i had a headache that long, i’d probably be in a psych ward on permanent suicide watch.

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nolafwug • May 28, 2008 at 4:35 pm

PQ, I know where you’re at, at least a little bit! I once had a migraine that incapacitated me for 5 days straight. I finally just went to the Charity Hospital emergency room because I didn’t have insurance. I couldn’t do anything except breathe through the pain behind the towel I had covering my eyes. I remember what I wore. I remember the lady screaming and crying and falling out of her wheelchair and no one helping her or looking at her. It was all so unreal.

They gave me a shot of Demerol and I felt nothing. Then they gave me Percocet and I perked right up. Headache gone. They gave me a prescription for 24 pills or so and I remember how scared I was until I filled it that the pain would come back. I felt like an animal. Nothing else mattered but getting the drugs. I totally understood so many things at that moment. I made the pills last for two years and only took one when I had a migraine that seemed particularly bad or wouldn’t go away after 24 hours. That was about 5 years ago. I don’t get many headaches now and very few of them are migraines. None have lasted overlong. I’ve cut way down on caffeine and artificial sweeteners. One cup of coffee a day and two crystal lights is my limit. It seems to help.

I wish you the best. I know from reading your blog and book you will conquer this one way or another. Take care!

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victoria • May 28, 2008 at 4:37 pm

All the advice-giving above? I don’t think people presume to diagnose or cure you over the internet so much as they feel a powerful affinity for anyone who is going through some sort of trauma that they too have experienced. There’s nothing like pain for making people want to communicate. (Literary critic Elaine Scarry wrote a book about this topic called “The Body in Pain.” Being in pain makes people feel trapped in their bodies, and the way out seems to be language and metaphor.)

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Rosa • May 28, 2008 at 5:12 pm

I had awful headaches and sinus problems itchy eyes, sore throat etcetera and have many of the same medicines you mentioned. But this year my allergies are barely noticable. I got a jar of local honey last Fall and took a spoon or two a day. (The theory being that the local bees are ingesting the allergens and you will too in ever so small doses to built up your tolerance.) And I bought a neti pot and I use it once or twice a day. (Nasal irrigation, try it, it feels great!) The people at your local health food store will know what a neti pot is if you want to try. My allergist suggested shots, at a cost of several thousand dollars! I’m so glad I did my own research and gave the old fashioned methods a try.

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Kelly • May 28, 2008 at 1:15 pm

I am so sorry you have to deal with this. I have no advice in terms of getting rid of the headache, but I do have some advice about chronic pain in general. In a nutshell, when I was 21 I herniated the lowest disc in my back. In 2004 I had a spinal fusion to replace that disc. Those years were almost constantly filled with pain, but they were also filled with doctors thinking I was drug seeking, telling me I was crazy, I was too young to have disc problems, I had fibromialga (sp?) (I had pain in 1 place! WTF?) and eventually, whether it was true or not, I felt like even my family thought I was faking it, or crazy. I felt like a hypochondriac, and really started to doubt what I knew was actual pain. After a long, awful road, I finally found the right doctor, who did the right test, and what do you know- I had almost no disc left and needed serious surgery that week. I was off all pain med’s one week post op after long term high dosage use.

But- while the pain was bad, the experience was far more damaging to my mental health. Chronic pain, especially when it is unexplained or explained by something people can’t see, affects so much of your life in so many ways. Make sure you take care of your mental health. Many pain management practices have psychiatrists in their practices, and if that’s not available I later found a wonderful therapist who helped me deal with a lot of the anger, resentment, and self doubt that was still there 3 years later.

So, that’s my advice- keep your whole head healthy. The scar on my back is barely noticeable, but the emotional scars were much bigger. I know you’re not at the point I was at then, if only because it took so long for me to find the right doctors, but it’s something to watch out for.

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Sonya • May 28, 2008 at 5:28 pm

(((((JEANETTE)))))

I am sooooo sorry that you are in so much pain!! No advice or diagnosis here just lots and lots of hugs and well wishes.

I’ve gotten my autographed copy of your book and am looking forward to curling up with it soon as I know it’s gots lots of good information and giggles.

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ginny • May 28, 2008 at 5:32 pm

I also had great success with Amitriptyline (once they got the dosage right) for chronic neck pain. I hope you find something that helps

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SaucyWench • May 28, 2008 at 5:33 pm

Heya!

I’m reading your book now and LOVING it!

Just a quick question: Have you tried cutting out salt? I used to get horrible headaches until I changed my diet and cut out sodium and added salt.

It might help. I figure at this point you’re willing to try pretty much anything and hey, it can’t hurt, right?

Good luck andI hope you feel better soon!

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VerseFameBeauty • May 28, 2008 at 5:38 pm

The only thing that can solve my tension headaches is my chiropractor. I know you hate when we give advice, but I am sooo serious. Also, it will need to be the right chiropractor (one who does a lot of manual stimulation and not old-school activator, etc.). I would pretty much bet… oh I don’t know… my pinky finger on this advice. :-P Hope you can get it resolved soon!!

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PastaQueen • May 28, 2008 at 5:59 pm

Heh, the first time I read this I thought you said “it turned out I was nuts.”

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PastaQueen • May 28, 2008 at 6:01 pm

Don’t worry, I’m no where near suicidal.

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Laura • May 28, 2008 at 6:21 pm

Pasta Queen i recently discovered your blog and your story and attitude are totally inspirational!

So sorry to hear about your headache, hope i can make some helpful suggestions.

wonder if you have looked into food intolerances?

I have wheat and dairy intolerances (rather than medically defined allergies which only test certain reactions) and developed an intolerance to soya when i ate a lot of dairy substitutes. My symptoms were depression, weight gain and flu type symptoms, but migraine is a common sympton too, a friend who had major pms and migrains found a huge improvement when she avoided problem foods.

From what i’ve read symptoms tend to vary with an individual’s weak points. Often people develop intolerances to things they consume frequently such as wheat, dairy, corn, caffine etc and feel they could give anything up but x! however even something as apparently healthy as tomatoes can cause a reaction. A food and symptom diary is key to help identify suspect items, symptoms can even appear 1 – 2 days later.

Also I hope you have checked listed side effects of any medication you are taking, your body has gone through some big changes and even drugs that were ok in the past may be affecting you in different ways now.

If you are trying to give up caffine I have found L-tyrosine (an amino acid) 500mg capsules emptied under the tongue can give a mild boost instead. licorice also works for me as a mild stimulant.

I find that low fat high protein meals boost my energy, eg tuna or chicken or egg salad for lunch, just forget the bread and other carbs, and it’s actually really filling which i would never have believed till i tried it.

I live in the UK and one of the most useful nutrition books i’ve found is the New Optimum Nutrition Bible by Patrick Holford. It gave me the background i needed to look for more data on my specific problems

Lavander and chamomile essential oils on the pillow or inhaled or in massage/bath oils are very relaxing, can’t imagine how stressed you must be in contant pain

Sorry it’s a longish post, will be keeping my fingers crossed you feel better soon

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anji • May 28, 2008 at 6:29 pm

Ha! I thought the same thing!

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karen • May 28, 2008 at 6:33 pm

Wow! All kinds of advice :-D

I just saw on the news something else that is triggering migraines – those cute swirly light bulbs – the florescent ones! They don’t know why, but they are triggering headaches in some people.

We’ll save energy and the environment, but half of us will have debilitating headaches!

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anji • May 28, 2008 at 6:34 pm

I left a message yesterday talking about the effects of chronic pain… when I read someone’s comments which tells of this, that’s when I know that person has REALLY been there and understood. You hit the nail on the head. The physical pain can someday alleviate… but the emotional part is the hardest… it’s not that you are nuts but that you are in so much pain you FEEL nuts sometimes! :D Glad you got some relief…

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Kate • May 28, 2008 at 7:30 pm

I don’t know if you will get around to reading all of these (by my count I am number 64) but let me just put in my two cents: You have lost an enormous amount of weight. Your body is readjusting to deal with your new size. Your posture is different, your centre of balance has shifted, organs have shrunk… even your skin has. There is less fat pushing on your central organs, on your eye sockets, your neck… the list goes on and on. In the efforts to rebalance, something has got pinched!! I suggest (along with others) chiro and more massage and of course…yoga. Good luck. I am really enjoying your blog (just discovered it).

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Shelladawn • May 28, 2008 at 8:06 pm

Wow,you poor thing,you have enough drugs at home to open up your own pharmacy.I sincerely hope something starts working soon and you find some relief.Positive vibes positive vibes from Australia.

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coyote • May 28, 2008 at 8:22 pm

Sorry to hear about your headache. Hope you get to feeling better soon.

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cindy • May 28, 2008 at 8:36 pm

I went through the same thing. Unfortunately they still have no idea what causes them, but they have reduced the severity and frequency. I take B2 and magnesium twice a day, along with a low dose antideppresant that helps w/ chronic pain, and a blood pressure medicine. I have tylenol 3′s for immediate pain, and amerge (like Imitrex but not as strong b/c I had a bad reaction.)

Magnesium supplements might help and since it’s a vitamin can’t hurt you.

Good luck and I hope they find a cause/solution for you. I had to see 2 neurologists before one found something resembling a plan for me at all.

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Nicole • May 28, 2008 at 8:59 pm

How horrible. Sorry to hear about your headache (seems like too common a name for what you have been going through). On the good news front tough, I just got a copy of your book so I am doing my part for the “fund the cure” fund.

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Jen • May 28, 2008 at 9:10 pm

Sounds like your brain is too big for your head. You might be too smart for your own good. My advice would be to wear earmuffs at all times and try not to sneeze.

Dr. Jen

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BB • May 28, 2008 at 9:17 pm

I am sorry to hear what crap you’ve been going through. Sounds like you’re getting good advice here. There’s got to be an answer soon. Prayers & speedy healing to you.

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BB • May 28, 2008 at 9:18 pm

PS I’m buying the book from Amazon :)

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Cindy • May 28, 2008 at 9:40 pm

When I hurt, I eat. When I feel sorry for myself, I eat. When I am frustrated and feel out of control (like not being able to control a head ache) I eat. So this is how your post scared me—all those reasons to eat…

Regaining continues to be my biggest fear, of course, and your story allows that possibility to enter into my thinking (not because YOU will, but because I would, under those same conditions…).

Best wishes for a speedy recovery, PQ!

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Beckie • May 28, 2008 at 9:57 pm

I feel for you. I have been dealing with migraines for years and not until recently have I found relief. I am currently on Propranolol and before that I was on Topamax (http://www.topamax.com/topamax/index.html) both are great!

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Ritamae39 • May 28, 2008 at 10:32 pm

How about Red Box tea. I’ve recently begun to have a lot of headaches . . . they seem like sinus or allergy ones. The Sifu at my Kung Fu school suggested it. My headache went away before I could try it but I’ve got a box in the cupboarch just in case I get another one. He swears by it. And while I haven’t tried the Red Box Tea yet, two other teas he recommended for female troubles have really done wonders . . . and I was very skeptical before trying them and so was very surprised when I got results within days. The best is Dong Quai tea for hot flashes. It has almost cured them (not that you are even close to that but maybe some of your readers might benefit from it)! The other one I’d rather not post about.

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cm • May 28, 2008 at 10:58 pm

i don’t have a remedy idea for you. oh, wait, maybe try getting someone to scare you or try drinking a glass of water upside down? oh, shit, that’s for hiccups.

no, really i just wanted to say that through all this endless meta-suckage you still manage to be funny! i love it.

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JudithNYC • May 28, 2008 at 11:14 pm

Oh, PQ, I am so sorry that you are going through all this pain. I used to get one or two migraines a week and know how miserable it can be to have constant pain. I hope they find a cause and cure for you. In my case, my migraines went away with menopause. I hope your headaches go away much, much quicker.

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weelittleme • May 28, 2008 at 11:19 pm

I know you don’t want to have all sort so of comments “diagnosing” you. I am going to apologize in advance but I feel like I need to say it because your case sounds exactly like something I experienced and something I later found a professor of mine also had. You are describing it to a t including all the stuff that doctors tried.

For both of us avoiding all gluten did the trick. It can take a while to take effect but still, something you might want to try. I also saw above that someone mentioned diet soda. Aspartame causes long lasting relentless headaches for me.

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PurpleGirl • May 28, 2008 at 11:37 pm

I second this. I get low-level, chronic headaches if I forget to take my magnesium. Magnesium does a huge number of things in the body, including regulating the constriction and dilation of blood vessels. Your body requires a lot of it, too, and a lot of people are deficient in it without knowing it–because your body will pull all the Mg out of your cells in order to keep the blood levels in range, so a blood test won’t show it.

If you did decide to try this, be sure you get chelated magnesium (magnesium aspartate, oxide, citrate, or taurinate). Large doses of elemental magnesium can cause the runs because all the ions can be absorbed, whereas chelated minerals are coated in protein and are more fully absorbed.

Also if you try it, I’d suggest tablets with 150-200% of the DV, maybe even twice a day, for a week or so. It takes more than a day or two for the cellular levels of Mg to rebound. Also, dairy products and dark green vegetables are great sources of magnesium.

I hope you get this taken care of soon, I can’t imagine how difficult it must make life. :(

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Andrew is getting fit • May 28, 2008 at 11:51 pm

You have my sympathy.

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Joyce • May 29, 2008 at 12:12 am

PQ, I won’t say I know how you feel, because I don’t. Everyone who has chronic pain is in her own world–every body and every mind are different. I think you’re an amazing person to have accomplished so much with this kind of albatross hanging around your neck. You have amazing will and tolerance. I hope you’re as proud of yourself as you deserve to be, and I hope you find a solution soon.

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susan • May 29, 2008 at 12:44 am

Hey PQ,

What a battle you’ve had! It sounds like you’ve got a team of experts on your side, so you probably don’t need all of us in the peanut gallery throwing out ideas, but just in case, here are some things that have worked for me:

- a drug called relpax which is similar to imatrex

- a dental appliance to be worn at night for teeth clenching/grinding

- two excedrin migraine formula, two advil, and a dramamine (hm. i wonder if i should give that kind of advice to the internet. use at your own risk! read what the bottle says! etc…)

Good luck, I’m rooting for you!

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Lauren • May 29, 2008 at 12:45 am

There are so many comments I feel bad adding mine… but did not come across this idea… A year ago I was at the optometrist for a normal eye exam when he found that my optic nerves were swollen… well after a CT and MRI to rule out a brain tumor and then a spinal tap to check my intracranial pressure, I was diagnosed with psuedo-tumor cerebri… Many people with this condition suffer from constant, nagging headaches (I was lucky that it was just an incidental finding and I had no symptoms). Basically it means that your CSF is not draining properly from your head and your intracranial pressure builds up… It is most prominent in child-bearing aged women (often those who are overweight). Its cause is usually idopathic. The typical treatment is Diamox (the same meds used by people for alititude sickness)… hope this helps in some way :)

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susan • May 29, 2008 at 12:47 am

Oh yeah, and a friend has had some success with a TENS machine. I’m afraid of them, myself, but I guess after 3 months you might be ready to try just about anything.

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Tracy • May 29, 2008 at 1:16 am

I wanted to say first, I love your blog, and second, I feel your pain. My headaches were not CONSTANT like yours, I did have some down time….but I did have bad headaches daily, and migraines at least once a week. I started seeing a chiropractor, and it really did help a lot. It didn’t CURE the problem, but it certainly helped a TON. For me the cost was worth it, and it certainly sounds a lot cheaper than everything you’ve gone through so far.

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Joan • May 29, 2008 at 2:11 am

I have to comment not because I have a good suggestion, but because I get so much pleasure out of stopping by here. I’m sorry you are suffering. It’s good that you are otherwise at your healthiest, can you imagine if this had happened while you were living your pre-blog life? I’ll be sending positive thoughts your way

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Joan • May 29, 2008 at 2:12 am

I have to comment not because I have a good suggestion, but because your blog is so good for me. I’m sorry you are suffering. It’s good that you are otherwise at your healthiest, can you imagine if this had happened while you were living your pre-blog life? I’ll be sending positive thoughts your way

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Marcia • May 29, 2008 at 3:25 am

just wondering… you said you had privacy concerns. have you had any problems with that? because i was thinking of starting a blog for myself for theraputic reasons but sine i’ve never done that before, thought i’d ask about any cons. i appreciate any advice you may have, thanks.

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Barbe • May 29, 2008 at 8:44 am

I had a constant, severe headache from the last week of January until mid-March. Sounds like I went through much of what you have: Xrays, blood work, the MRI, neurological tests, eyes checked, dentist visit, ER visits, drugs of all description (which didn’t help, not even the one I needed to take in the hospital).

For me it turned out to likely be stress/anxiety. I never would have dreamed that stress, a tension-type headache, could cause such severe, constant pain. In the past I always thought “oh, it’s just stress, just a little tension headache”, but severe pain isn’t that uncommon I guess.

I had another medical issue I had been dealing with since January 9th, which worried me more than I realised, until my body finally developed the head pain. It wasn’t until I started to be able to cope with the first problem, to come to terms with it, that the headache finally started to subside.

Good luck to you.

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colleen • May 29, 2008 at 12:17 pm

hi i know that you have had lots of people telling you what is wrong, but i’ve been thinking alot about it. i had the same thing happen to me. i tried everything every med known to man, cutting out food to see if i was allergic, stress management, mri after mri, bloodwork, etc. i saw a neurologist for a couple of years and they couldn’t figure it out. they finally sent me to another doctor. to make a long story a bit shorter they found out that i had a hole in my heart. my blood wasn’t getting re-oxygenated very well and causing headaches and migraines. feel free to email me and i can discuss it more with you. my email address is coco26@comcast.net i don’t know if this is what you have but i feel like i needed to share what happened to me and help other people out there.

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wilma • May 29, 2008 at 2:13 pm

I’m glad Maxalt worked for someone–I don’t think it really works for me, unfortunately. And, wow, it is expensive…but when I have a migraine, I’d gladly pay almost anything for a pill that would get rid of it…

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christine • May 29, 2008 at 9:56 pm

i know you don’t want to be diagnosed, but since you have abnormal veins in your brain, you could have an angioma (a venous malformation), very common but you should check out http://www.angiomaalliance.org

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Diana • May 30, 2008 at 8:14 am

I haven’t read all of the comments but check into PMDD if someone hasn’t already suggested it, especially if they are monthly headaches. Origins has a product called Peace Of Mind, it doesn’t cure the headache but it certainly gives me some relief. Hope you find some relief.

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Mark Antony • May 31, 2008 at 2:44 pm

Hi, very sorry to hear of your constant pain. One suggestion I recommend you looking into is Shiatsu, ancient Japanese pressure treatment. My work supervisers have had positive results with it, though cases not nearly as long lasting as yours, but well worth consideration.

I wish you peace. Mark.

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anwar hussain • November 18, 2008 at 8:07 am

@Jen – I WOULD LIKE TO INTRODUCE MYSELF AS A PAIN HEALER

TILL DATE I HAVE HEALED ABOUT 14LAKHS OF PERSONS FROM THEIR

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VANISHES IMMEDIATELY}

I HAVE VISITED UPTILL MORE THAN 12 COUNTRIES AND WHEREEVER I VISITED

THEIR HUNDERED OF PEOPLE CAME FOR RELIEF OF THEIR PAIN

I HAVE CURED SCIATICA,MIGRAINE,ASTHMA,TUMERCANCER,PARKINSON

ELEPHANTIASIS,AND ALL JOINT PAINS.

HEADCHES,SINUS PAINS,SPONDYLITIS,NECK PIANS,ALL KINDS OF BODY

PAINS,ETC,.

ONCE I CURE THE PAIN FROM A PARTICULAR REGION IT SELDOM

IF ITS EVER EFFECTS THE SAME AREA AGAIN.

my web address

http://www.touchcures.com

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Natalia • April 22, 2009 at 12:23 pm

Does your headach get worse when you stand up or make you more dizzy when you stand up? If so you should ask your nurologist about a seribrial spinal fluid leak and a blood patch. That’s what ended up to be wrong wih me and the blood patch worked instantly after failed atemps with every other treatment in the hospital. It’s a low blood pressure in the brain because of a pin hole leak somewere in you scull leaking the fluid. The headach gets unbarable and even with all tests being normal that can still be what’s wrong. Good luck.

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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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