Doc's Cluster Headache Journal

Wednesday, June 10, 2009

Long Absence

Thank you to all the people still reading the archives and posting or finding this blog for the first time.

I know I have been gone for a while now and just to explain quickly, My son who is now 6 months old has food sensitivities and is pretty demanding. I take care of him during the day and try my best to keep up with my work at night. I also handle night time feedings so his mother can rest and be alert at her job. I am often awake with some type of headache anyway so why not use it to our advantage.

My headaches have not been bad lately (clusters and migraines) it would be nice to think that my son is causing the release of some hormone in my brain that will eventually "repair" me. But its more likely that I am just in one of my long lulls that happen every few years... its like I get a break so that I keep going. Just enough relief to string me along.

Also I am convinced that the lack of sleep I am getting is having a positive effect on my headaches. I have been getting 3-4 hours of sleep a night for the last 6 months and it has seemed to make an impact. Anytime I sleep more I get hit with pain of some type. The last few days my wife and I have changed the schedule so she controls the mornings more and she tends to let me sleep because from her point of view "how could I not need sleep?" but I have been feeling worse than I have in months so I need to start setting an alarm or something.

Of course I am still under treatment... Topamax is not a wonder drug, but it's the least offensive preventative I have taken so fare and at my current dose it seems to contribute to "mixing up" and "muting" the cluster attacks and the migraines.

So I don't know how often I will be posting or answering comments over the next few months... Mr. Babies GI claims he will eventually get over his sensitivities and hopefully that will make him a lot calmer and happier. Maybe he will even sleep through the night! But for know I just have my hands full, and it was not like I had a tone of excess energy before... heh.

I have been suffering with clusters for 18 years now... I have had times when it almost drug me down and times were I got a nice long break from it and started to imagine that I was free. I know how much it sucks... Hang in there folks. I hope everyone who reads this finds relief soon.

posted by Murdock Scott at 8:59 PM

14 Comments:

  • Hi Murdock,

    So happy to find your blog. Been getting clusters for years and dreaded going to the Neuro for fear I'd have to go on these drugs, but I finally it happened and I'm on them! Neurontin totally took me out of participating in my life after just a few days on it. I'm now wonding down on that (900mg) and starting with Topamax. Have you found the Topamax. I'm not sure what I'm going to get, but I hope it's better. I'm a 34 year old guy who works on a trading floor in New York. It's so weird to be super fast and on things one day and then totally not on my game when taking these pills. BLah.. glad you're out out there.... hope you and your son and family are well.

    By Anonymous Joshua, at 6/11/2009 7:12 AM  

  • Hi Doc & Katy,
    Good to see the new post. So very sorry to hear your little guy has some difficulties to deal with, too. Hopefully it will be something he outgrows.

    So here's a new question to pose to folks.....Has anyone ever been checked for a vitamin deficiency, specifically vit D? I ask because about a month ago I was diagnosed with one. Several of my symptoms have resurfaced, with a vengeance. Including migraines & severe fatigue & all over pain. I'm experimenting with the possibility of additional food allergies to cause the migraines, but so far it's not consistent at all & we can't seem to get out of square one. I will see my regular dr again soon & hope to get some more of these new questions answered. I have been researching vit D deficiency & have ran across several postings of folks with a vit D (& sometimes other vits) deficiency AND they happen to be chronic migraineurs also. Makes me curious to ask this group here if that's ever been a possibility for any of you? Especially since some of us seem to have overlapping symptoms. Just a vicious cycle, huh? Be nice to get it "figured out" one day. In the meantime, we'll all keep trying. Well take care & keep posting. I hope you've had at least some relief from your headaches. Hang in there!

    By Anonymous Anonymous, at 6/18/2009 11:06 PM  

  • Congrats on the wee one !!

    I hope he sheds is mini ibs problem soon :D There have been a few in my family as well with food sensitivities most do grow out of it with exception to the milk sensitivity. LOL

    I am glad to see you are back I do occasionally check in on your blog to see what's new in anothers world and continuous battle with the beast.

    I do have a question for you though... Have you ever had speech problems before during an after a CH attack? I have all too often and have been wondering how many others have a similar issue with speech.

    By Blogger Ginger S., at 6/21/2009 10:37 AM  

  • Joshua,

    I am glad to meet you and I am sorry we have this in common.

    You sound like me! I HATE taking drugs and I am constantly trying to find the best solution that gives me the smallest amount of ill effect in other areas.

    I am so tired and worn down during a cycle plus I have learning "differences" (I think thats what they call them these days) and although I am a very clever fellow, I have to use extra "brain cycles" to compensate for them. So being a bit "off" or groggy due to medication is NOT ACCEPTABLE. Now some people with clusters don't get me when I talk this way because they will do anything to remove the pain, including take whatever medication is offered regardless of the side effects. I understand that, its hard to argue with the remarkable pain of clusters and if people need to do that, I respect their decision... but I would loose so much of myself and my life if I just let myself be medicated into oblivion.

    I guess you can say I am sensitive to the side effects of some of these meds. At least thats the way polite doctors have put it.

    I work for myself these days and I am lucky to be able to set my own hours and work when I feel well. But back when I was a Creative/Art Director at the 9-5 (actually 50-60 hours a week was common) jobs I used to have, I would not have been able to keep going if I had been on some of the meds they had given me to try. I also doubt my wife and I would have chosen to have a baby if I had to take meds that effected me badly. We are practical people and my health and ability to function normally was something we discussed at length before deciding to have our son. Clusters and the drugs associated with them could have prevented me from being a father.

    The good news is that I think it IS possible to find a neurologist that understands and will work with you to minimize side effects. I would say that Topamax has been working pretty well for me to "mute" attacks without too much disruption in other areas. (gotta tune that dosage though)

    But really the jury is still out until I get hit with another mega cycle... or I don't. For all I know I could be in a bad cycle now and the Topamax has it under control. It's 1:33am... Thats about the time I traditionally get bad ones, and I DO feel the familiar twinge behind the right eye. I am just cautious about saying something like "Topamax works!" because I know that many things that seemed to have had positive effects for others did nothing for me. Everyone reacts differently... I am convinced.

    Thats why I think cluster folk need a really good Neuro and should not be afraid to shop for a new one if they don't feel they are getting the care they need.

    Sorry to ramble on, but I just wanted to say that I understand what you are saying... Its bad enough that we have to have this crushing pain and the exhaustion that comes with it... but then the medications that are supposed to help us can sometimes make us a little less of who we know we can be. How insidious is THAT!

    Good luck! I hope Topamax works well for you.

    By Blogger Murdock Scott, at 6/22/2009 1:55 AM  

  • Anonymous,
    (I think I know who this is but I don't want to be wrong and look foolish. heh.)

    I am so sorry that you are not feeling well again, I thought at one point you were on track to getting your health problems worked out.

    I can't say that I have explored vitamin deficiency. I have been curious about it because my sister seems to be going through some problems with that.

    I deeply believe that clusters are caused by a physical difference in the brain. (some research seems to point to this) But triggers are another matter, and thats where something like what you describe might have a large effect. If, in some people, vitamin deficiency triggered their natural preponderancy to have headaches... that would sound about right to me. But I am not sure this would apply to everyone with migraines or clusters.

    I have almost stopped looking for things that trigger my headaches because there are so many that I have found so far. I sometimes say the "existence is my trigger". heh. But I think I need to look into this. Understanding your triggers is headache 101 and I also have the freaky fatigue thing so it seems like I should explore it.

    I would not be surprised to discover that part of my problem was due to vitamin deficiency. I would be a bit surprised if addressing it solved my problems with headaches completely.

    I hope this course leads you to a solution, I hate that you don't have a definitive answer after all this time. Sorry I wasn't more help.

    By Blogger Murdock Scott, at 6/22/2009 2:28 AM  

  • GInger,

    Hi! I am forming a response to your question but its late and I type so slow that I may need to post it tomorrow... Short version: No, I don't loose speech in particular, but I DO often feel like I have lost about a dozen IQ points! Even hours before the pain starts.

    Interesting ain't it. : )

    One of my more common overly verbose posts on the subject soon... Plus I want to read some more of your blog. : )

    By Blogger Murdock Scott, at 6/22/2009 2:34 AM  

  • Hi Doc & Katy,
    It's Marie. So sorry to have been vague previously. Were you right on your guess of who "Anonymous" was? :) I hope things are going well & you're still feeling reasonably good. Glad to see that more folks keep finding your site. It is sure a real help to find others with similar situations.

    You might look into taking vitamin D...weigh the pros & cons of course. For me, it has helped quite a bit with the fatigue. Not 100% yet, but I notice a major difference in how I feel when I take it vs the few days I've forgotten. Hopefully your sister can get some relief as well. I found a resourceful site on Vit D deficiency - www.fightingfatigue.org. Maybe it can help you or your sis find commonalities & a measure of relief. Hopefully.

    The headaches are back & we are not sure the cause. It's annoying, but oh well. Perhaps one day we'll get it all figured out. Most days are manageable. Hang in there all! And keep blogging. :)

    -Marie

    By Anonymous Marie, at 7/13/2009 7:11 PM  

  • hormotogo to clusterbusters.com peaple , magic mushrooms do work , they worked for me and many others, trust me its worth trying. im in mid cycle now and barly any attacks. it works....

    By Anonymous Anonymous, at 8/06/2009 10:34 PM  

  • Anonymous (self medication advocate),

    While your input is very welcome, what you suggest is not new information to most people reading this blog. It has been discussed. So although I don't encourage people to reveal what are currently illicit activities online... I think most of my readers are aware of the option to use psilocybin.

    I read your post as a bit condescending to be honest.

    I don't think you should assume people are not informed because they are not openly discussing self medication with illegal substances on a public blog. : )

    I have to say, in my nearly 2 decades of suffering these attacks, there have been many times when I tried something that I thought was "working" only to find that it was more likely a natural rhythmic dip in my pain and frequency. I hope that is not the case with you. But the web is FULL of people swearing up and down that this or that treatment IS the answer.

    The short answer to that is that somethings work for some people some of the time and sometimes after a period of "working" the previously effective treatment stops being effective for some of those people.

    I am very happy you found something that is giving you relief! Just remember it may not work for everyone.

    I am not saying that psilocybin is not worth trying... Personally I think it can work well for some people. It is after all, a psychoactive drug that changes brain chemistry so and as I understand it... the medications that I am currently taking also alter brain chemistry... If you are the type of person willing to risk altering your brain chemistry outside of a doctors care... thats up to you.

    Just keep in mind that you are suggesting people take a large risk by being in possesion of and self medicating with illegal drugs. I would suggest taking a more modest tone with others on the subject untill the resurch has been done and the facts are well known... for all you know it is unsafe in the long term.

    Now, you have made your decision and I respect that... but others may choose a different path. I just ask that you be respectful of them.

    By Blogger Murdock Scott, at 8/09/2009 12:14 PM  

  • Hi Murdock,

    I have my first appointment with Dr. Watts next Tuesday for chronic migraine. I'm to start Topamax today. I did an internet search of Dr. Watts and your blog came up - can you tell me- do you like her; have you been happy with her as a doctor? My doctor suggested I see Dr. Black, but he's no longer taking patiens, so they scheduled me with Dr. Watts and I'm a little nervous seeing a doctor I know so little about. Any help you can send would be appreciated.

    Thanks, Brooke

    By Anonymous Anonymous, at 8/28/2009 2:22 PM  

  • Brooke,

    My story is similar to yours. My doctor had been suggesting that I see Dr. Black for a long time. Each time I called they said he was not seeing new patients so I put it off longer.

    Then I had my 16 day long migraine... I stopped putting it off and agreed to see Dr. Watts.

    A quick perusal of my blog will tell you that I don't always have kind words for doctors and the medical profession as it is structured at the moment... But Dr. Watts has always given me straight answers and seemed interested in getting me on track to feeling better. Like most doctors offices these days, the visits move really quickly. and it can seem rushed. I try to be very prepared so I can concicely tell her what has been going on and that seems to work well.

    OH! She speed reads! So if you print out the main points of what you want her to know, she can scan it very fast... it freaked me out the first time she did it! I thought she was joking, but she read two pages of notes and knew all the information from them.

    After getting to know her, I would say I trust her with my health and that she knows what she is doing. It may take some time to develop a rapport with her though. I would just advise you to be bold and tell her what is working and what is not, she will listen and like that about her.

    As far as Topamax goes I hope it works for you, I don't know if I am in a natural lull or if we hit a nice level of dosage but it seems to be having a positive effect on me. Everyone is different though. I have tried so many things that other people swear worked for them that did nothing for my attacks.

    As someone who understands how much headache can effect your life, I will be hoping that you and Dr Watts find something that works. Good Luck!

    By Blogger Murdock Scott, at 8/28/2009 11:50 PM  

  • Thanks Murdock - this is only day 4 on Topamax but I'm going to stay positive. So much has not worked over the years, something has to! I appreciate the feedback and am looking forward to my first meeting with Dr. Watts tomorrow!

    By Anonymous Anonymous, at 8/31/2009 10:53 AM  

  • Hi all, I just ran across your blog on Topamax and saw where you had just started it and wondered if it was working. It is suppose to be night two for me, but It is strange...see the thing is that I am trying the Top. for Fibro./nerve damage and don't normally have headaches...had one all day after the first dose..I am hurting so bad like it's a spinal tap H.A. or something or migraine. Man, I thought I was losing it there for a while. My dow is due in @ 30 min. and I think I am going to wait till morning or something..I don't know. I really wanted it to work bc I have so much pain and having these muscle cramps now...I guess something like a ruptured tendon in my calf muscles..Well, I could say it feels like those leg pains you get when you are pregnant,but they are so much stronger.

    Anyway, back to the Top. I still feel like my head is in a fog and I have this ear problem that I have had all my life that I can hear really well out of it and it is picking up all kinds of sounds that hurts. The TV is even to noisy..and I have easy music on, but it is going right through me. Can't even listen to it. I just think it wasn't meant for me to take Top. and I hate that. I have to take Lyrica and can't miss a dose or the pain is so excruciating..anyone got any ideas..Do u think the Top. is doing it? Should I try it again in the morning?Scared to tell you the truth, but want it to work so badly..gained 80 lbs. on Lyrica and I want it off...I used to weight 104 ...that is a big difference.Of course I have other issues besides just the fibro.,or nerve damage...CPS,Cervical & Lumbar DDD,Spinal Stenosis,Myofascial Pain Syndrome,Spondylosis(that is a bad one),which one of them isn't...but usually I have a good attitude and get thru the days..but these darn leg cramps are H***. My hubby runs and rubs them out for me...I love him so much..they hurt so much.

    Well, I enjoyed the blog..I hope you visit mine now...:) I have one that is new and since they added that darn google thing I can't sign in but I do add things to my own comments so you should visit..it is interesting to say the least. I do need some visitors to get things going good and would love some comments on how I am doing.. first blog on web..I think it is okay...if I have to say so myself..not fishing...:-)
    Do hope you stop by and I do say a word or two @ how docs can do us wrong and some exhorting ...it's all good...see ya and I will be back to chat sometimes and check on the update @ Topamax..and now that I am getting headaches I will know where to come talk @ them..Karen
    http://skeetelmore65.blogspot.com/

    By Blogger skeet65, at 11/24/2009 11:57 PM  

  • Karen,

    Topamax is working pretty well for me it seems at keeping my really bad cluster and migraine attacks in check. Also the side effects seem to have mellowed out. It took a long time to get to this point however. When I first started taking it I had lots of weird problems crop up at the same time. I believe my body has just gotten used to it over time. I bugged my doctor a lot to adjust the dosage and it took a while to tune that in.

    So I guess for me I started out disliking Topamax and over months of sticking with it I noticed that things started to even out. I hope that helps.

    You understand that I only speak form my personal experience. I firmly believe that meds work better for some people than they do for others. Especially in regards to pain.

    I hope you find a treatment that works for you soon.

    By Blogger Murdock Scott, at 11/25/2009 1:09 AM  

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