Doc's Cluster Headache Journal

Tuesday, December 02, 2008

Fed up with doctors...

I see 3 doctors at the moment, all 3 generally treat me like I have a time limit on my visits. I have had one stop me in the middle of describing my symptoms and say "We need to move on, we are running out of time." He didn't say he didn't feel what I was describing was unrelated mind you... just that he didn't have time to hear about it.

I have a horrible time contacting another of my doctors, I can't call and speak with her. I have to call her assistant. Now thats not so unusual, except that her assistant doesn't take calls either! You have to leave a voicemail to get a callback from the assistant and that can take 24hrs! The message sternly warns you that only one call can be made a day and that calls must be made before 3pm... remember, this is just to speak to her helper. I just don't feel there is any interest in connecting the dots and finding out what is really wrong with me. She just seems to medicate away my symptoms. Can't any neurologist can do that?

Even the doctor I really like is usually so fast during visits I feel like I am speed dating.

This takes the cake however, My wife is having a baby and yesterday was the due date she was given originally so we called her doctor to see what we needed to do and schedule an appointment (he told us to call if she had not gone into labor yet) But the prick had left the country! Yes, thats right... just left without saying a word to us. My wife is not prone to be overly emotional and she is a level headed chick... but as you might imagine this upset her a great deal. That pisses me off to no end.

We made the decision to use him based on the recommendation of friends and information we had gathered in meeting with him and spending time with him over the last few months. We now know nothing about the doctor that will be in charge of the delivery.

He robbed us.

I have often defended the actions of doctors in this blog, but I don't feel so forgiving at the moment. This is how they see us folks... I know it is different for each doctor, but I honestly think that in order to be successful as a physician you need to be able to be "selectively" empathetic. I think it helps a great deal to be able to turn off your concern for others like a light switch. Watch them like a hawk, and feel free to use them like they use us.

14 Comments:

  • Hi Doc & Katy,
    Congrats on the little one! How exciting! :) Hopefully the temporary dr will be fantastic! Best wishes on the delivery of the bundle of joy!

    My headaches are still around. Am taking Maxalt now.....not impressed; it doesn't do the trick & costs an arm & a leg. That's WITH insurance! Go back to the headache dr in a couple weeks & we'll see what she says then. Thankfully the dr I am seeing is very empathetic, as she, too, is a migraneur. Well anyway, glad to see you posting again. Hang in there....all three of you.

    --Marie

    By Anonymous Anonymous, at 12/04/2008 8:04 PM  

  • Doc:

    My name is Elizabeth Tapia. I've responded to your blog posts a couple of times before.

    I just want to say THANK YOU.

    Reading your chronicals is like reading a biography of our own lives... So much the same. I think you should put all your posts together and publish a book, because I've never found another person on the net that can describe what we are all going through better than you.

    To recap my experience: My husband, Ramiro, started having cluster headaches about a year after contracting Lyme Disease. He's been in a state of perpetual torture since about 2004. Since then, our lives have changed.
    Our lives now center around "The headaches". He has been to countless doctors. I have done hours upon hours of research in a desparate attempt to help him with whatever treatment is out there. I try my best, but with a full time and "stressful" job working for a United States Congressman, plus taking care of him and the house, my strenght is growing thin. I miss those carefree days of not having to walk on egg shells. Of not having to deal with doctors. Of not having to spend hours upon hours on the internet searching for clues to the cause and cure. I miss ME too. Perhaps I'm becoming selfish.

    My husband has told me, after his last cluster cycle (which lasted 5 months) that he can't go through another one. That he WON'T go through another one. I don't know what to do... and I'm at my wits end.

    One observation I had about my husband was that he has somewhat of an obsessive personality. His doctor had encouraged him to take an antidepressant several months ago, but he resisted. He is currently taking 125 mg. of Topamax per day... but of course... he's been on that for a few years, and it never really helped with the headaches. (By the way... he has numbness in his hands since taking it).

    He did, however, say that the Topamax helped him get some sleep, which we all know is so important for Cluster headache patients. That's why he wanted to stay on the stuff.

    Finally, I convinced him to start on the antidepressants. After one month, I have seen a significant improvement on his obsessiveness...but on the down side...he sleeps alot and seems sort of like a "shell" of his former self. I'm keeping my fingers crossed that the combination of Topamax and the antidepressant with help stave off the next cluster cycle, which is due next April or May. In the meantime, our house is like a "bubble". I am working hard to keep family and friends far away in an attempt to keep our lives as stress free as possible. My hubby is a sucker for other peoples "drama". So I made sure nobody would be calling or asking for favors or help.

    At the age of 44, I never expected to have this kind of problem with a loved one. The lack of concern from family and friends if very disburbing as well. They just think..."Take an aspirin" and everything will be ok. Nobody understands... so that's why I wanted to take the time to write back to you to thank you for what you do for all of us.

    Be at peace...breath deep...and live long and prosper! Congrats on your new baby as well. Wishing you a wonderful holiday season and a Happy and HEALTHY New Year. Remember to think positive!

    Warmest regards,

    Elizabeth Tapia
    Indianapolis, IN.

    By Anonymous Anonymous, at 12/19/2008 5:56 PM  

  • Marie,

    As you may have guessed I have been quite busy recently... Our son came on the 9th and I have been going a mile a minute since. The doctor worked out really well, It did not go quite as smoothly as we had hoped and I am convinced the doctor we ended up with was the right person to be doing the delivery.

    As much as the changes that mothers go through are obvious... I firmly believe that fatherhood changes men in subtle but significant ways that mostly go unnoticed. I seem to have found new strength and have been a bit more on top of things than I would expect. Actually all my years of sleep depravation experience is paying off big time right now. For once I feel like I am not only keeping up with Katy but I am helping her more than she usually helps me... She is really not used to working on so little sleep! For me its "old hat". Its a nice feeling to be able to give back since she has put up with so much. We will see how long this burst of "new dad energy" lasts.

    I never liked Maxalt... it made me feel really drugged up if I recall. Oh, and yes... lets talk about the cost of these meds! Is it any wonder we don't have good research on the causes or possible long term cures when SO much money is being made from the (mostly ineffective) preventatives and med intended to abort attacks?! Don't get me started.

    I am really glad you have a doctor you like, hopefully that will make the process a lot less annoying. She sounds great.

    By Blogger Murdock Scott, at 12/27/2008 11:55 PM  

  • Elizabeth,
    Its good to hear from you again!

    I have been wanting to reply to your post at length but find a newborn boy occupying my typing hands a great deal over the last week. I will just say hello for now and try to find a stretch of time to compose my thoughts soon.

    By Blogger Murdock Scott, at 12/28/2008 12:00 AM  

  • Hey,

    Stumbled across your blog while searching for any new cluster info.

    For what it's worth, I've found that pot, Sinus Busters and Alleve help with the pain... sometimes. Sometimes, of course, the pain simply wins. (The pot doesn't actually ease the pain, but it sort of separates it. Still hurts, but you don't really care...)

    Congrats on the new addition, BTW. Hang in there...

    frankallen1569@yahoo.com
    Dallas, TX

    By Blogger frank1569, at 1/03/2009 9:58 PM  

  • Hi Doc & Katy,
    Congrats on your baby boy! Glad to hear the dr was a good one & that you're adjusting to your new family routine. See.....everyone always said your sleep depravation could come in handy one day? Okay, so maybe they didn't, but I'm glad it is helpful, somewhat?

    We have good news on our end. Very exciting! Quite by accident I discovered the cause of my headaches. Drumroll please.......................Dairy products! After testing my theory, I decided without a doubt that I'm allergic to dairy products. Funny thing is that a friend has been asking for quite a while if I thought this was a possibility because dairy triggers migraines in him, too. No, of course not, I thought because I've eaten it my whole life & never had a problem. So, this "new life" is very odd & extremely frustrating at times. It's only been a week & a half that I've been dairy free, but I feel amazingly well! Had one migraine, but don't know the cause. Still experimenting with some foods to see what else may be triggering my attacks. I go back to the headache dr soon, so I'm really excited to tell her what we've discovered. Very curious to see what she has to say; hopefully she'll agree to testing me for other food allergies as well.

    I've also been "treating" my TMJ symptoms by wearing my retainer at night & doing some head/neck exercises to keep the muscles looser, which is supposed to cut down on TMJ related migraines. I don't know for sure that it's contributing to my reduced headaches, but it is helping with the TMJ pain at least.

    Glad to see more folks have found your site, too. Hopefully we can all help one another in some way to figure out a way to get some relief. (Though I'm not a supporter of the pot thing personally.)

    Take care,
    Marie

    By Anonymous Anonymous, at 1/12/2009 7:54 PM  

  • Doc

    I read your blog, but I have never commented. I have been suffering from clusters for 4 years or so. I was I felt like I had a headache or a hangover from a headache all the time. It literally hurt to walk sometimes; and laying there was a drag too. I wanted to let you know something that I have tried and it seems to be working. I have been on everything... topamax, maxalt, zomig, so much.

    I got fed up and went off all meds a year ago. I started a bikram yoga class which was hell for about 3 weeks. I live in Houston and went to heights of health and she hooked me up to the core intergetix system that some nasa guy invited to identify the composition of moon rocks. Anyway, it is crazy and if my engineer husband wasn't such a believer, I wouldn't have done it. It identified several food allergies and other blockages that I had. She also put me on Intramax, a liquid multi-vitamin. Lastly, I started getting regular back adjustments and acupuncture. I am down to about one headache a month which I can deal with. The last headache, I actually fought without any meds. My regimen has been kind of a pain in the ass, but I really feel like I have my life back. It is too short to feel like shit all the time.

    Regarding, the yoga, I tried other yoga before and it was a waste of time. Bikram is done in a heated room, and also incorporates backward bending. Other "Americanized" yogas don't do this. There is something about that posture that holds the key I think. It is a medicine, not just an exercise. I had so many meds in my system, that I thought that I was going to die on the bikram yoga floor several times; however, it was so worth it. I encourage you and all of your readers to attack you migraines from all sides... nutrition, skeletal alignment, and yoga. I was fed up with masking the symptoms with pharmaceuticals.

    Best of luck and congratulations on the birth of your son.

    Abby

    By Anonymous Anonymous, at 1/21/2009 11:07 AM  

  • Congratulations,

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    By Anonymous E. Rachels, at 1/23/2009 9:31 PM  

  • The fact is, I think doctors are starting to forget about their original oath to heal the sick and focus more on the financial bottom line. This isn't too surprising, given the way things are, but it is rather disconcerting to see so many drop even basic courtesy.

    By Anonymous prozac, at 5/14/2009 3:10 AM  

  • This comment has been removed by a blog administrator.

    By Blogger Abbey, at 5/19/2009 12:49 AM  

  • Abbey said...
    I feel the same with shrinks trying to keep me in the office longer for "therapy" when in the end, they just prescribe *product name removed*. So I skip the meetings and just order *product name and link removed* online. It works faster that way.
    By Abbey, at 5/19/2009 12:49 AM

    By Blogger Murdock Scott, at 5/19/2009 1:32 AM  

  • Hi all,
    Long time no blog. Thought I'd share some exciting news. I discovered the cause to my headaches......It's an allergy to dairy products. It was quite by accident that I discovered it & must add that when I informed my doctor, she was very skeptical. I have now been living dairy-free for nearly six months & have been feeling fantastic! Within that time, I have had maybe six or seven migraine bouts. While it was quite an adjustment initially, it has actually been a fairly simple adjustment. Since that time, I've heard of a handful of other people who discovered dairy to be the causes of their headaches as well. Not saying this will help everyone, but I guess it wouldn't hurt to give it a try for a week or two? You be the judge there. Take care!

    --Marie

    By Anonymous Anonymous, at 5/21/2009 10:02 PM  

  • Hi. I'm a 22-year-old cluster headache sufferer. I've been reading some older posts of yours, have you considered the equator issue? There's been research (wikipedia page on cluster headaches) that the further you are from the equator, the less trouble with headaches. Though this doesn't explain your aversion to heat, it'd be worth googling the distance of some of your hotspots from the equator. You've probably investigated this already.

    By Blogger Molly, at 6/09/2009 10:02 PM  

  • Hi Molly, my customary greeting is to say that I am glad to meet you but I am sorry that we have this in common...

    Clusters at 22... damn, thats a Kick in the pants. Mine didn't start till I was 26 or 27.

    I have only heard the basics about the equator thing but I have never been able to find the research behind these claims. Have you seen any studies? Even the wikipedia page says it needs citation.

    I would like to know where this information comes from originally. I live in one of the southern most states in the U.S. so it has not seemed to benefit me from my point of view. When I travel north, I seem to get fewer headaches but then I get less headaches whenever I leave home. I need to see data on this before I consider packing my bags... because sure I can go much further south unless I leave the U.S. heh.

    And I really hate the heat. : )

    By Blogger Murdock Scott, at 6/10/2009 10:50 PM  

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