Doc's Cluster Headache Journal

Sunday, November 02, 2008

Long And Low Cluster Pain, Side Effects Update.

I had pain typical of cluster in the classic cluster location for several hours today. It never got over about a 3 on my personal scale (different from the commonly used Kip scale). These "Long and Low" types of headaches are not new for me and typically have a long ramp up that leads toward the more classic short intense attacks sort of like compressing a spring.

I don't really know if other people experience clusters this way. I somethings think that my reluctance to take pain medication gives me a somewhat more "detailed" view of my pain than others may have when its less intense that is. I also firmly believe that everyone is different and its possible that my headaches are just a little "weird". The other possibility I see is that they are "old" I used to have nothing but the short intense attacks, like most people describe. These "long and low versions that now come in between are fairly new, I have developed them over the last 3-4 years. They seem to be an "addition" not just a modification to the attacks I was already having.

Plus, In the last year or two I have also been getting more and more migraines which feel completely different and are located in a different area.

So, one got through the lower dose of Topamax is the point I guess. I think its clear. I am more susceptible to feeling pain from whatever causes the headaches at this lower dose. I want to stress that even at higher doses I could feel "stuff" going on. It just didn't usually get to be long lasting pain... weird short little bursts and twinges while the two demons fought under the blankets piled up on my head.

Also, I had a visit with my regular doctor and he does not seem to think the weird stuff going on with me is related to the Topamax. I love this guy, but I think he may be wrong... I kinda hope he is wrong. He thinks I have carpal tunnel (not necessarily repetitive stress injury I guess but something else falling under that umbrella) and a disorder that makes the lungs sensitive to temperature changes (like from inside and outside your body) and thats causing my airways to spasm. He took some chest X-rays and I am waiting to hear back on that. Ugh.

I would much rather it be the medication.... I don't want more weird stuff wrong with me.


  • Hi Doc,
    Okay so this is really weird & interesting to me.....I've been seeing a craniosacral massage therapist for the past few weeks in an effort to "cure" my headaches, or at least lessen the frequency &/or intensity. It is helping to a degree, though the past couple weeks have been not so great. The therapist is extremely smart when it comes to everything related to the human body. Seems to know every single muscle in the body & what it's related to & what may cause "issues" with it - spasms, being out of place, tightness, numbness, you name it. Also a little unusual in the methods, but if they work...hey, go for it!

    So here's what struck me as REALLY interesting: Your doctor thinks there's a connection with your lungs & airways & headaches. Bear with me on this's kinda long but I don't know how to condense it. Last week I went to therapy with a fairly bad, but tolerable, headache on the left side of my head. It was just on the left side - down the base of my skull & around & above my left eye. But it wasn't a migraine. So after trying the usual muscle releases on my neck & some traction on my head, she went to a muscle in the front left side of my neck. (The name is about 50 letters long...I don't remember exactly what it is.) It was actually quite painful for her to work on. But she assured me it would release my headache. Well, about 5 minutes later, sure enough it was gone on my left side, but jumped over to my right side in exactly the same places! So she did the same thing on the right side of my neck. (That was sooo painful! It hurt for two days & did not eliminate the headache or even alleviate it at all.) So when it didn't immediately help the headache, she consulted a book, a "muscle Bible" if you will to see what affected that muscle she worked on & some possible causes for it's tightness & spasms. She asked how my breathing pattern was. Fine, as far as I knew. So she had me take a few deep breaths. Turns out I was not breathing correctly - my diaphram doesn't fill up correctly. She checked the muscles at the base of it & that was about the worst pain of my life! She showed me on her how it should look & be easily moved. Not so with mine. She could barely push on it because the muscles were so tight. So she worked on them - a lot. It was excruciating! It's actually still a little bruised & that was 5 days ago. It activated my costocondritis. Ugh.....So the fact that your doctor thinks there's something breathing-related that affects your headaches is very fascinating to me!? Really makes you wonder.

    And lastly....we finally have a diagnosis for my headaches. Migrane, transformed migranes, & chronic daily headaches. Duh! But the dr I saw was very knowledgeable about headaches, as they too are a sufferer. So some new meds, which I don't recall the names, to try. Two are preventative; I'll take one for a week & the other for......who knows. Then two abortives to try. So we'll see what happens.

    Oh yeah - why does your dr think you have CTS? (Carpal Tunnel Syndrome) Just curious. I, too, have CTS & have had it since about the same time the migranes started when I was a teenager. Never really gave it a second thought until reading this post. Just another interesting coincidence perhaps? I don't know, but it is interesting nonetheless. Do you suffer with a lot of symptoms that normally accompany CTS? If so, does there seem to be any correlation between that & headaches? Just curious again. My CTS has been worse than normal lately (it too goes in phases like the headaches). So I will try to start watching for a pattern of correlation between the two. Oh goodie - one more thing to keep track of, right?

    Take care. Chat soon.


    By Anonymous Anonymous, at 11/04/2008 8:56 PM  

  • "here's what struck me as REALLY interesting: Your doctor thinks there's a connection with your lungs & airways & headaches."

    I will post more later, but I don't think my Doctor thinks this... much of the stuff I post here is my own thoughts. Its important to me that its well understood that I sometimes go off on tangents that are based on my own speculation.

    I don't know yet if any on my 3 doctors consider my coughing related to my Headaches... I post a better response when I feel better later.

    Always good to hear from you, I hope you are felling better. : )

    By Blogger Murdock Scott, at 11/06/2008 10:59 AM  

  • Oh gotcha. Okay. Well hopefully they figure something helpful soon! As for me, not much change yet. I am trying a couple abortives for my migraines & they seem to work okay for now. We'll see how it goes. More later.


    By Anonymous Anonymous, at 11/09/2008 8:26 PM  

  • Marie,

    Sorry for the long absence in our conversation, I am preparing my house for the arrival of our first child and taking care of my wife as best I can. Time has be kinda short and I have been needing to "set aside" my own discomfort a bit the last few weeks.

    I have been having pain in my hands for months (part of the symptoms list I thought came from Topamax) and thats why my doctor (internal medicine) suggested I may have carpal tunnel. I had a nerve conductivity test done at the office of my neurologist and it came up negative. In other words my nerve conductivity at the time was good.

    It has been suggested that I am suffering from De Quervain's tenosynovitis instead, but it has not been determined, other causes have not been ruled out and he wants me to discuss it further with my neurologist but getting an appointment with her is a challenge.

    None of my doctors think the pain in my hands is related to taking Topamax... I am still not 100% convinced. I think I could be having a reaction that others do not. You said that you stopped coughing when you stopped taking it for example. They also don't think my coughing (still going on) is related.

    I plan to stop the Topamax after the baby comes and I am feeling like I can make a change with less disruption. Right now, my wife kinda needs me on an even (no major spikes in pain) keel.

    By the way, I have a friend that is a massage therapist and she showed me some stretches for the problems in my hands... One nearly makes me "pass out" because its an overwhelming sensation of release that effects my whole body. Making me think that the pain in my hands is just part of some widespread "problem". So, I am much more willing to believe massage/relaxation can effect what is ailing me overall... even possible the coughing. How has that treatment been going for you?

    Well, thanks again for the exchange of ideas I hope I didn't leave you hanging for too long... in addition to being busy and not feeling that well, I get to the point at times where I just can't muster the will to discuss this stuff.

    Sometimes I just need a Break from being a "headache guy".

    By Blogger Murdock Scott, at 11/29/2008 8:30 PM  

  • Odd, but you sound like me for my first 30 years of CH, stick with a single doctor as he flails away.
    Last few years, my approach to clusters is more like carpet bombing, ergo many practitioners, many approaches. Visit, for abstracts to most every scientific paper on CH, also, a network of cluster sufferers for maybe 100 standard and non standard approaches to fighting clusters. Expecting your doctor to spend the days of research it would take to come up to speed is not realistic, but when you start to print off some of the research, it makes it easy for your md.
    Another big mistake, is that we do one thing for cluster, and then stay with it forever. Individual headache remedies, in my experience, either work or don't work real fast. Give them a few days, then try another, then another etc. There are at least 50 drugs that have applications to CH. Also, there are non prescription drugs that have a lot of anecdotal efficacy, is like a shoping list. Keep your MD in the loop, but try them all, if OK with the MD, two or three together, or more.
    Last mistake, is that we work so hard on the headaches, that we ignore the episode. BIG MISTAKE. There is a body of evidence, that episodes can be averted. Working on the whole body, some people get lucky. Someone mentioned cranioscaral massage, I also recommend myofacial work. PERHAPS the plates of the skull get out of whack, mine seem to. Same with the spine, the electrical functions the glandular functions and the dietary functions. In standard medicine, Board certified osteopaths, allergy specialists, MD acupuncturists can address these functions, in alternative medicine, chiropractice, applied kinesiology and other practices also address these problems.
    The BIGGEST mistake in any of this, is choosing the right doctor. One in 100, or 500 doctors is up on CH. Hell, it is an orphan disease, most of them haven't even seen it, and they sure can't spend days researching it. Ask any doctor if they have current cluster patients,
    ask if they are up on current research, ask them how they approach CH. Look for specialists, clinics and the like, and if you are not happy with the treatment, move on.
    Anyway, I schlogged along almost 35 years, with these until I got really, really mad at them. FINALLY, I have a witche's brew of techniques that have dropped the severity and episodic duration. Afte being totally drug resistant for the whole time, I find Triptans actually seem to help, Relpax and Zomig both, 1/3 of a tablet, (40mg and 5 mg respectively) before bed, and I actually sleep. If I take them in the day, I don't sleep, so daytime clusters get oxygen at 25 liter flow, hot showers, a/o a massive dose of magnesium and Kudzu, washed down by a can of Pepsi, some find Red Bull more effective. For the long term, now for 15 years, I have found diagnosing allergies and diet modifications and supplements, craniosacral adjustments and overall skeletal adjustments, and acupuncture therapy has markedly decreased the duration and severity of my clusters.
    This is ONLY ME, each person and cluster is different, what works for one person, won't work for another, what works for one headache, won't work for the next.

    Some techniques might only work for one in a hundred, you will read the reports thus saying the drug or technique is not effectatious, but they are missing the point if the procedure helps only one patient, if your headaches are resistant to most things, all you can do is keep trying, you might be patient number two.
    Anyway, stay with it, keep trying new things, the only other option is to give up and let the Beast win, no a good option at all.
    Best of luck out there,

    By Anonymous Anonymous, at 12/28/2008 7:56 AM  

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