Julia:

Katie, have you contacted the NIH Undiagnosed Disease program I e-mailed you about? Unfortunately, I really believe you have a great case for them. Whatever decisions you make about the headache, I wish you all the best!

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Katie Reply:
July 29th, 2010 at 9:13 pm

Yes, I did. I think it was sometime later in the week that you suggested it. I’ll have to look and see if they sent me anything to confirm my submission. Thanks for the reminder.

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Jenni Williams:

I can imagine there isn’t much you haven’t tried. I wish I knew something about what you are going through and some kinda of miracle cure. All I can do is send you good vibes and prayers.

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Kelly @ The Startup Wife:

So sorry to hear that.

I’m sure you’ve tried a billion things I’ve never even heard of, but I thought maybe if I just kinda brainstormed a bunch of pain-management-related suggestions something might spur something for you or another commenter who might know more than I do.

I know you’ve seen renowned CSF leak people and Chiari specialists and neurologists–have you seen any really good pain management specialists? Have you ever tried accupuncture or accupressure? Does your neurologist know of any clinical trials that you might be able to do? Hypnotherapy? (I’ve heard it can be effective in cancer pain management.) Pot? (Again, effective in cancer pain management…) This is kind of a stretch (haha, okay, a lot of these are a stretch) but maybe try reducing or eliminating different foods, cleaning products, etc. to see if any are triggers that exacerbate your headache? Or maybe see if there’s any kind of really fancy pillow that makes it just a tiny bit more comfortable to sleep? (Not that that’s causing your headaches, obviously, but I know when I get migraines I’m so desperate I’ll do anything for even tiny little improvements.) I wonder if you could try to connect with any post-docs or medical fellows or something who are researching headaches/pain management/CSF leaks/Chiari whatever and have some in-depth conversations about new research etc. your doctors may not have heard of yet? (I know Dr. Dodick of the Mayo Clinic is doing a series for the NYTimes right now on migraines … a different issue, obviously, but if you could get ahold of someone like that they might be able to point you in the direction of any researchers who might have ideas for you.) Maybe a chiropractor to help find ways to release some of the pressure or something?

I truly hope you’re able to find something or someone to help. Hugs.

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WHG Reply:
July 30th, 2010 at 10:28 am

I second the suggestion for acupuncture — either in terms of pain relief, or an attempt to correct the underlying imbalance, or both. I don’t know if it would work for you, but I know it can be useful for anesthesia alternatives and that seems like it might apply in this case. Pot might not be a bad option at this point, either (and you know how I feel about illicit drugs, I think). Hypnotherapy can help people get through labor pains, so maybe a good practitioner would be able to give you some techniques to at least move away from the pain? I think reaching out (cautiously) to CAM practitioners is worth a shot at this point, even if they are a little woo.

What about getting in touch with the doctors who published the case study we found who looked so similar to you? Maybe they would have suggestions as to colleagues who might be able to address your problem in a constructive way?

Many hugs, hon. My heart aches for you so much these days.

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Joy Reply:
July 30th, 2010 at 12:22 pm

@Kelly @ The Startup Wife, I second the suggestion for acupuncture. It has worked wonders for my migraines. Wonders. Also, the allergy/food sensitivity issue is very important. Don’t forget that food sensitivities and allergies can change over time, until one day – bam! – you eat something that wreaks total havoc with your system. Avoiding certain foods and additives more recently has greatly reduced other, almost-but-not-quite migraines that I have been living with for the past couple of years.

Good luck, Katie. I wish you relief from pain. ((hugs))

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Katie Reply:
July 30th, 2010 at 9:18 pm

@Kelly @ The Startup Wife, I’m not completely opposed to acupuncture, but I’m also not sold on the fact that it actually works. I am willing to consider hypnotherapy and pillows, but I can’t bring myself to try pot. I have little good explanation for it except that I am a total control freak and drugs do the opposite of keeping someone in control.

@WHG I’ll look into the doctors who published the articles. You may be onto something there…

@Joy I’ve been wondering about food stuff, but even when I had a bunch of allergy testing done and then eliminated all the foods I was allergic to, it didn’t change anything in my head. But my sister is suggesting a headache diet that she’s read about. I’m considering it, but it’s hard on my husband and our normal eating stuff. So, I’m filing it under to be considered for now.

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Jodi Reply:
July 31st, 2010 at 9:18 am

@Katie,

Katie,

I was leary of accupuncture myself (I have tired it but it didn’t work FOR ME and I HATED how I felt after each session so I stopped) but just because I wanted to SEE if they really could figure things out based on pulses, etc. I left things out of my medical history on purpose (it was only a consult and NO treatment would be taking place that day) and he nailed it! He asked if I had certain conditions and I DID. How did he know? They were not things he could have guessed. So, it may be worth a try. Get suggestions from people in your area don’t walk in blind. I saw someone that was suggested by FOUR people that didn’t know each other.

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Anna in IL Reply:
July 31st, 2010 at 3:47 pm

@Katie,

I don’t know about a headache diet, but I do think that keeping a food journal might help you find correlations between food And headaches.

Also, I wonder about hormones (contraceptives and/or cycle.) Not to be too personal (too late), but did these headaches start and/or get worse after your IUD was installed?

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Katie Reply:
July 31st, 2010 at 5:34 pm

I agree with you. I think I’ll start tomorrow morning. It certainly can’t hurt. Probably would help diminish my crap food intake to…

Elinor Reply:
July 31st, 2010 at 8:44 pm

@Katie,

I am an acupuncture and yoga convert! I do not tolerate narcotics well at all! Like one oxy and I am puking my guts out and seeing stuff – which would be fine if I didn’t have a broken back! I have had success with older generation pain pills Amitriptyline (which is also I think an antidepressent) is very effective for nerve pain and when my back is spasming — but that may be because it knocks me out.

Back to yoga and acupuncture… Yoga taught me to meditate, which helps me deal with the pain more effectively. I too was skeptical of acupuncture until my physio (otherwise known as my hero) put the pin in my thumb to make me puke… It was an effective demonstration if messy. But she would twist the needles until I could actually feel my muscles relax, the first time it happened is still one of the best things I have ever experienced.

I usually go to massage therapy (not a massage, it is more pain then relaxing and the therapist has like a million papers on her wall) right after so that the therapist can manipulate my muscles at their most relaxed.

I have had great success with this combination — but totally understand that my pain and physiology is different, it’s just my suggestion

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Lauren:

Are there heavy-grade narcotics you can take? I know that’s not a sustainable solution, and I’m sure painkillers can easily become addictive in a situation like yours, but to aid you while you’re slogging towards a solution (which I believe will come), it might help. Same with marijuana, though that has an obvious set of drawbacks, too (although it’s always helped with my migraine-induced nausea).

I’m sure you’ve tried acupuncture, so I won’t suggest that.

Are there options (eg, seeking treatment at Mayo) that you’re ruling out because of cost? Is it possible that taking out loans or going into debt would be worth looking into a solution like that?

Like everyone else, I hate this for you, and I’m pulling for you.
Like everybody else, I completely feel for you.

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Kathy Reply:
July 30th, 2010 at 5:15 am

@Lauren, Sigh…I have a pet peeve about this. People with chronic pain do not, in the vast majority, become addicted to narcotics. Unless you are predisposed to addiction, it just doesn’t happen. What we become is dependent on narcotics. As with some other drugs, like anti-depressants, if you go off of them after being on them for an extended period of time a person will go through withdrawals.

Dependent does not equal addicted. Ok, off my soap box. Besides probably not useful info for Katie. Sorry

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Lauren Reply:
July 30th, 2010 at 9:29 am

Kathy, I’m speaking out of personal experience — a close friend of mine with chronic pain issues and no family history of addiction or personal history of addiction is now in the throes of legitimate, terrible addiction. Having said that, I do recognize that dependency is different than addiction and certainly more common — but I speak from personal experience, not from a medical background, and so I shared what I know to be true.

I’m definitely not an expert in what would or wouldn’t help Katie — she asked for suggestions, and I offered the only ideas I had.

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Katie Reply:
July 30th, 2010 at 9:23 pm

@Lauren and @Kathy

You both bring up good points. I will throw it out there that I hate, like, caps lock HATE narcotics. I know that there’s a time and a place, but my body doesn’t handle them well, I don’t like them and they’re beyond a last resort for me.

I am looking into places like Mayo, particularly the Arizona location since it’s pretty reasonably close.

Kathy:

One thing I haven’t seen brought up here (and you may already have tried) is one of the things suggested for people with fibromyalgia. Find a way to make the pain not the enemy. Usually cognitive based therapy is suggested. There are more woo-woo ways of going at it. Like meditation, but the idea is not to be locked in mortal combat with your brain. Cuz it’s a no win battle.

I just got my fingers crossed this thing backs down so you can enjoy BlogHer!

I

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Katie Reply:
July 30th, 2010 at 9:24 pm

@Kathy, Hmmm, can you link me to something like the cognitive based therapy? I’m interested, I just don’t know much about it.

And me too on BlogHer, I have visions of me sitting alone in my hotel room in pain. Not good visions.

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Jamie:

I, too, would suggest looking into non-traditional medicines. I was sick with something years ago that modern medicine has no “cure” for. I started doing research on my own and did cognitive behavorial therapy, chiropractic, accupuncture and eating different and I basically cured myself. My doctors laughed at me which pissed me off to the point I was done with them. I still needed some of the medication to help but I was able to do more good on my own. The biggest hurdle for me was one mentioned above – not to let the pain take over. I had to find a way to talk myself down and I did that.

Maybe try the woo woo stuff for a month and keep a pain calendar as it usually not immediately evident you’re getting better.

Hugs, though. And because I’m a brat – I think that since so many of us have suggested woo woo stuff you have to try it

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Katie Reply:
July 30th, 2010 at 9:26 pm

@Jamie, The wo woo stuff made me laugh. I promise I’ll look into some woo woo, is that fair?

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Alicia:

How about a pain management specialist? My father goes to one for the same type problem and they have done wonders, his pain is very manageable now. And they did not drug hom. He gave up and finding out WHY this was happening and decided to just treat it. He went from neuro to neuro with no answers – this has worked. He has a life now.

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Katie Reply:
July 30th, 2010 at 9:30 pm

@Alicia, My last neurologist was a pain management specialist and ironically she did little to mitigate my pain. I am open to finding a different one, but I need to do my research since my insurance will only let me see one this insurance year (starting August 15th). I’ll put it on my list.

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laura:

have you looked into the specialists here at UCLA? I haven’t read you long enough to actually know if you have, so I apologize for the redundancy if you’re already tried UCLA.

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Katie Reply:
July 30th, 2010 at 9:37 pm

@laura, I’ve actually not been seen by anyone at UCLA. I go to USC so that’s always been more convenient, but I don’t know which doctor to see because I only get one neurologist and one neurosurgeon referral per insurance year, so it’s tough to commit to a new one without a lot of good information.

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peach:

medical marijuana? i have a friend who swears by it for his chronic (no pun intended) pain….

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Katie Reply:
July 30th, 2010 at 9:40 pm

@peach, My answer is a hesitant ummmm, no-ish. I’m a SUPER control freak and I struggle to know how you can stay in control when high. But I should probably throw it out there that I’ve never been high before, so my experience is a bit limited.

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peach Reply:
July 31st, 2010 at 12:17 am

i totally understand with the losing control thing and i understand it has a stigma attached but i have seen it work wonders for pain management…i just saw your question below and i will say that, yes, medical and recreational is the same high. many rec. users smoke way more though and thier effects are elevated. as for following rules, well it’s legal so you ARE obeying the law
don’t let movies and stuff like that put you off, you don’t have to get dreadlocks and play hackey sack and “trip” out. if used moderately and in the right setting it can do wonders. i don’t use it except for a day or two a month for cramps and it’s the only thing that works.

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Sarah:

Have you tried anti-seizure medication? For years I have suffered severe chronic pain (trigeminal neuralgia) due to a benign brain tumor near the trigeminal nerve. I tried literally dozens of drugs before finding one (anti-seizure) that works. I still get breakthrough pain at times, but it is tolerable rather than debilitating. I’ve heard anti-seizure medications can also help with headaches. I also agree with those that suggested medical marijuana. It might sound extreme, but it probably is less hard on the system than a lot of prescription drugs. Also, have you tried tramadol? Anyway, I hope you find a solution soon. I know that “I can’t live like this” feeling all too well. Hang in there.

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Katie Reply:
July 30th, 2010 at 9:42 pm

@Sarah, Well, I’ve tried Neurontin, I take Klonopin occasionally for anxiety, but I think those are the only anti-seizures I’ve tried. I know many of them are approve as headache prophylactics, I just haven’t found one that works yet.

I’m willing to keep trying though. Which ones have been especially effective for you?

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Cathy B.:

I have gotten migraines, tension headaches, cluster headaches since I was a kid. Certain foods ( red wine, aged cheese, chocolate, citrus, and nuts) all trigger them. Also alcohol, too much caffeine, and my period. Things that work: regular exercise (walking every morning), no bottled water ( get a stainless thermos and drink a lot!) no soda (poison!), meditation and yoga, and yes, acupuncture. I went to a real Chinese acupuncture guy. He quizzed me on what I ate , etc. Looked at my tongue and told me what to avoid. Diet stuff can be HARD since I am already a picky eater and have 2 kids to feed but his advice works. Funny: I had given up chocolate for years (TORTURE) but when I got pregnant with my first kid someone said often food allergies change with pregnancy so I started eating it again. Success! But when I got pregnant with my second kid I got headaches more than ever. Not crazy enough to try for third pregnancy just to eat chocolate.

I think food, exercise, are the biggest things you can control.

Good luck!!!

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Katie Reply:
July 31st, 2010 at 11:18 am

@Cathy B., Thanks for the suggestions Cathy. I’ll look into headache triggers. I’ve tried to look at commonalities with foods and headache levels, but so far I’ve got nothing!

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Kristi:

Hi there,

Just found your blog, and while I have not experienced anything near the pain you have been living with, my little girl did. I know many people have mentioned this… traditional Chinese medicine was the only helpful (although expensive) option for her. She saw a practitioner who works out of CHOC in Orange, CA, and specializes in pediatric pain management. At the time we were seeing her, a few years ago, she was also seeing adult patients in private practice. Don’t know if she still is, but her name is Ruth McCarty, and she was wonderful. Also, her husband was my daughter’s neurosurgeon, which was nice for me because I felt like she did a really good job of recognizing the wisdom to sometimes combine traditional treatments and “alternative” medicine. Best of luck to you.

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Katie Reply:
July 31st, 2010 at 11:04 am

@Kristi Wow, I will do some looking around and see costs and such. Great suggestion, thanks!

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Kathy:

Katie,

My daughter, Kerri was diagnosed with Chiari at age 13. She, like you, has tried many, many treatments for her headache pain. While reading your comments, I don’t think there ia one suggestion that she has not tried.

For her, the narcotics make her day to day bearable. Without them, she would not be able to function. She does function to a level where she can now babysit 4 days a week from 8-4. o look at her, you would NEVER be able to tell that anything is wrong with her or that she takes the amount of narcotics that she does.

She had used the medicinal marijuana when she was in her teens. At that time, she stated that it was absolutely the one thing that took her headache pain away. As her parents, we had to have her discontinue it, becuase she became what we thought was a little to relaxed with it. She was highly upset because as she stated to us, it was the first time in years that it took away her head pain. Sometimes, hard choices have to be made. For us that was a hrd one.

She also has a neurostimulator in her forehead (the battery pack is placed in her abdomen) which helps control the headaches. That is one thing I have not seen listed here. That worked for her for about 2 years and just now it is starting to cause her more discomfort than help. Trigger point injections releived the pain but unfortunatelythey didn’t last long.

She has tried the accupuncture, (hated it), cranial manipulation therapy, the inpatient Ketamine. That is some heavy duty treatment and she truly hated that one most of all. Now she sees a physical therapist once a week and he is helping her with her neck and back pain. It’s not totally releiving the headaches but it does make her feel better.

I know I’m not giving you much help or hope to go on but all of these things are trial and error for each individual person. You just have to find the one thing that makes your life a little easier. Living with headache pain and levels of pain from 7-10 on a daily basis are horrendous. Kerri feels like it is a decent day if her pain is at a 5.

I truly hope that some of these suggestions will help you. You have amazed me with your stamina and determination so far, and that is I’m sure what has gotten you to this point.

My thoughts are with you and I hope that an answer is found soon.

Kathy

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KD fr. Chronic Babe:

Also there is another chronic babe blogger that has chiari (sp?) here is her blog, maybe there are some answers/help/support????
http://gypsyshalunya.blogspot.com/

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