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If you’re reading this, someone close to you is a Migraineur, someone diagnosed with Migraine, a genetic neurological disease. Migraine is one of the most misunderstood, underdiagnosed and undertreated of all diseases. Unless you’ve experienced the pain and other debilitating symptoms of Migraine yourself, it is very difficult to comprehend. It is not an exaggeration to say that some people have committed suicide to escape the pain. In addition to the extreme head pain, Migraine can be accompanied by other symptoms including nausea, vomiting, dizziness, extreme sensitivity to light and sound, temporary loss of vision, inability to concentrate, difficulty in speaking/finding the right words, depression, panic attacks, and far more. The slightest movement can cause such pain that Migraineurs have described it as “an ice pick in my eye,” “my head breaking into pieces,” and “my brain exploding.” To put it plainly, Migraine can be absolutely devastating.
Here are some basics about Migraine Disease that you should know:
- Based on the most recent U.S. census statistics, Migraine disease affects more than 36 million people in the United States alone.
- Migraines are NOT headaches. Migraine is a genetic neurological disease, similar in some ways to Epilepsy. The head pain of a Migraine attack is only one symptom of an episode of Migraine disease, just as a seizure is only one symptom of an episode of Epilepsy.
- Migraine disease is NOT a psychological disorder. The disease and all it’s symptoms are neurological in origin and very, very real. Migraineurs are not neurotic, lazy, “high-strung,” overly emotional, or faking. They are in very real pain and physical distress.
- Not all doctors have the experience and knowledge to properly treat Migraine. Finding a doctor to properly treat Migraine is one of the most important, and sometimes most difficult, steps in treatment.
- There is NO CURE for Migraine. Most Migraineurs, with the help of a qualified doctor, can find preventive regimens that will prevent many, but not all, Migraine attacks.
- Migraine abortive medications such as Imitrex, Zomig, Maxalt, Amerge, Axert, DHE, and Migranal, do not work for all Migraineurs. It is sometimes very difficult to find medications that will relieve the pain and other symptoms of a Migraine attack.
- Migraine attacks can be dangerous. If the pain of an attack lasts more than 72 hours with less than four pain-free hours while awake, it is termed Status Migrainousus, and puts the sufferer at increased risk for stroke. A Migraineur in Status Migrainousus needs immediate medical attention.
- A Migraine attack can, in rare cases, actually be fatal. An otherwise healthy 21-year-old member of our community died of a Migrainous Stroke in November, 2001.
- Migraine disease can be disabling for some Migraineurs to the extent that they qualify for disability income or qualify for the Americans with Disability Act provisions. There are many whose disease is so severe that doctors are unable to control the attacks, and the Migraineur is unable to work or participate in “normal” daily activities. When a Migraine attack strikes, most Migraineurs desperately need a dark, quiet place to lie down.
- Migraine attacks can be triggered by many things:
- Perfumes and fragrances from other sources are a very common Migraine trigger. If you live or work with a Migraineur, please refrain from wearing fragrances around them.
- Bright and/or flickering lights, especially fluorescent lighting — some Migraineurs need to wear sunglasses, even inside.
- Many foods can be triggers, especially foods prepared with MSG.
- Loud noises and crowded places can also be triggers.
- Changes in weather are triggers for many Migraineurs.
- Cigarette smoke, exhaust fumes
- Each Migraineur’s triggers vary. There are many other potential triggers. This list is just a beginning.
- Stress is NOT a Migraine trigger. It is what is called an exacerbating factor that makes Migraineurs more susceptible to their triggers just as stress makes anyone more susceptible to the virus that brings on the common cold.
The Migraineur(s) in your life need your help and understanding. They need you to realize that they cannot help being ill, they are not “having headaches for attention,” and they are sometimes unable to care for themselves. If they need medical attention, they need someone to take them and be with them. As well as being extremely painful physically, Migraine can be devastating emotionally and to relationships and careers. Since the disease is so misunderstood, Migraineurs often feel alone, isolated, and desolate. They also often feel guilty because they are not able to “be there” for their family and friends as much as they want to be and because they may have to miss days of work. The Migraineur(s) you know need not only your help with getting their medicines and any medical care they may need; they need your moral support every bit as badly. A good, solid support system is as important to Migraineurs as their health care teams. YOU are very important to them. That’s why it’s important that you understand Migraine.
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Hey all…so I thought I’d come back and write here. It’s a Saturday night and I’d like to be doing something, but I chose not to because of my headache. Anyway, I wrote this about 5.5 months ago and just saw that it was a draft. I think I stopped writing because of a headache, but I’m not sure. So I’ll go ahead and quote it and then fill you in on the rest of whatever’s going on.
So I’ve been having a rough time with school and I think a lot of it is because of my headaches, but I don’t like to admit that. I was driving home after talking to my high school tutor, who I now see as a mentor – he doesn’t know that. We were discussing my past quarter in college and what advice he had to offer. He asked me the same question my math professor asked me the other day, “what problem are you having?” Both times I was asked the question, I blurted out whatever answer I could formulate at that time.
As I was driving home, I was thinking about my answers to that question and why I don’t ever mention my headaches. Many peers have suggested that I tell my professors about my headaches hindering my performance in school. It sounds great, it looks good on paper, but I can never get myself to do it. Why? I don”t know. I don’t know if it’s that I’m embarrassed to make excuses for myself in front of established individuals or I don’t want to make excuses for myself TO myself or I just get too shy to say anything.
If I had to answer the question, I would probably say that I simply don’t want want to make any excuses. I think there are a number of reasons for this. To start, I don’t like to make excuses for any of the problems I have whether that is not doing well in school, not being able to hang out with my friends, not being able to work out, or basically not living my life to the fullest. Next, I’m the type of person where it takes a lot for me to open up to someone. I usually don’t go ahead and
And it ends abruptly there.
Since Friday the 24th my headaches have been especially bad. I’m not sure what’s going on, I wasn’t able to find any triggers, but I just keep on chugging. Needless to say, the past week has been very rough in school and I’m not looking forward to what’s coming academically.
I saw a new neurologist in my area and it was probably the best neuro visit I’ve had YET. Whether it was an act or not, she seemed very concerned about my condition, she spelled out every option, she explained to me every detail that was going into her notes…it’s like she put me inside of her head, but dumbed it down. After asking if I had tried Topomax and Verapamil, she suggested that I try Namenda. She said that these three drugs seem to have the best…(I can’t think of the word that goes here – this is something I’ve noticed with these headaches. I’m losing my ability with words)…she was trying to say that these three work the best. So I started Namenda today (5mg once a day) and I’m hoping that it can really put an end to, or at least control, these headaches. I’m working up to 10mg twice a day of Namenda.
So if Anyone still looks at this site, you may know that I have mentioned TheDailyHeadache in the past. Unfortunately the Webmaster of that site is a migraine sufferer herself so she had to shut down the forum. As a result, I came across http://www.migrainepage.com . If you click on “Discussion” you’ll see a forum that’s heavily used and you’re sure to get comments on whatever you post. I haven’t been on it much, but it feels very welcoming from what I’ve encountered.
As I’m bringing this post to a close, I wanted to say that I’m becoming more and more private with this headache matter. I don’t seem to tell anyone unless it’s absolutely necessary (and I can rarely find a reason for that), and I don’t know how this is affecting me. Some people ask my why I disappear sometimes or how I act strange, etc. etc. That’s all stopped bothering me, I just like to keep it to myself. I don’t want anyone’s pity.
Lastly, I’m not sure how many people check this site out (probably very few, if any) but I thought I’d open the floor for some other people. Reading stories from other people makes me feel a little better about everything that’s going on – not in a mean way, but just knowing that there are others out there who can relate.
Go!
-ETH
Filed under: Uncategorized | Tags: back, chronic pain, headache, Headaches, knee, letter
So lucky for me, I’ve got other aches and pains in my body that are distracting me from whatever head pain I have. My back is sore, I think I sat in an uncomfortable seat somewhere or something, but my lower back is just sore. My right knee is a knee that I seriously injured some time ago, and its just sore and really bugging me. Kinda happy my mind is focused on that rather than headache.
I saw this, thought I’d share it. I agree withpretty much all of what it says
Letter to people without chronic pain:
Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its affects, and of those that think they know, many are actually misinformed.
In the spirit of informing those who wish to understand:
These are the things that I would like you to understand about me before you judge me.
Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I’m not much fun to be with, but I’m still me– stuck inside this body. I still worry about school, my family, my friends, and most of the time, I’d like to hear you talk about yours too.
Please understand the difference between “happy” and “healthy.” When you’ve got the flu, you probably feel miserable with it, but, I’ve been sick for years. I can’t be miserable all the time. In fact, I work hard not being miserable. So, if your talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or, any of those things. Please don’t say, “Oh, you’re sounding better!” or “But, you look so healthy!” I am merely coping. I am sounding happy and trying to look “normal.” If you want to comment on that, you’re welcome.
Please understand that being able to stand up for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes or an hour. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re paralyzed and can’t move. With this one, it gets more confusing everyday. It can be like a yo yo. I never know from day to day how I am going to feel when I wake up. In most cases, I never know from minute to minute. This is one of the hardest and most frustrating components of chronic pain.
Thats what chronic pain does to you.
Please understand that chronic pain is variable. It’s quite possible (for many, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t attack me when I’m ill by saying ” You did it before” or “oh I know you can do this!” If you want me to do something, ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are to be physically able to do all of the things that you can do.
Please understand that the “getting out and doing things” does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need exercise, or do some things to “get my mind off of it” may frustrate me to tears and is not correct. If I was capable of doing some things any or all of the time, don’t you think I would?
I am working with my doctor and I am doing what I am supposed to do.
Another statement that hurts is: “You just need to push yourself more, try harder.” Chronic pain can affect the whole body or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.
Please understand that if I have to sit down, lie down, stay in bed, or take these pills now, that probably means that I do have to do it right now. It can’t be put off of forgotten just because I’m somewhere or I in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.
If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. Lord knows that isn’t true. In all likelihood if you’ve heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also has includes failure, which in and of itself can make me feel even lower. If there was something that cured, or even helped people with my form of chronic pain, then we’d know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. Its definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.
If I seem touchy, its probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be “normal.” I hope you will try to understand my situation unless you have been in my shoes, but as much as possible, I am asking you to try to be understanding in general.
In many ways I depend on you — people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need you to help me with the shopping, cooking or cleaning. I may need you to take me to the doctor or to the store. You are my link to normalcy. You can help me to keep in touch with the parts of my life that I miss and fully intend to undertake again, just as soon as I am able.
I know that I ask a lot from you, and I thank you for listening. It really does mean a lot.
Anyways, that is that. I wish I could show it to everyone I know, but I like to keep my headaches pretty private. I hate when people are more concerned than I am…or than what I show.
Filed under: Uncategorized | Tags: appetite, chronic pain, Headaches, room, sleep, topamax, weakness, weight loss
Hey,
So I tapered up on my dosage of Topamax today. I went up to 200mg (100mg twice a day). I don’t know if it’s just coincidence, but I had a terrible headache ALL DAY (and still have it). I was not expecting it. I don’t know if it’s a side effect of tapering up or if it’s just an unusual day or what, but I sucked it up and lived through the day.
We visited family and friends, and after having lost some weight on the first ten days on Topamax, I was greeted with comments such as “you’ve lost weight,” and “you look sick!” It wasn’t the best thing to hear. I can stomach it though, I’m a big boy.
I had a general feeling of weakness through out the day. I still had the energy to carry out my normal functions and all, but I couldn’t go out and, say, play a game of basketball or run a few miles like I usually could, and I think that was because of the higher dosage of the Topamax. Also, I don’t know if it’s psychological, but tonight I was at the drugstore and I bumped into the someone I knew, but I was totally jumbling up my words as I was trying to speak to him. I couldn’t put together a sentence as my tongue kept getting tied and completely lost. I don’t know if that’s the language side effect I so often hear about of Topamax but maybe I’ll experience more of it, maybe not.
I was also told that according ot my culture’s belief, I’m sleeping in the wrong direction on my bed and I should switch rooms and directions I’m sleeping (I should turn around 180 degrees) so within the next week, I need to figure all of that out. So I guess there are some small changes.
Hopefully the weight loss stops, I’ve been trying to eat more but my appetite is dwindling and I know it. I try to eat, but my mind just doesn’t want it. I look at the food and I try to tell myself to eat but it doesn’t happen. *Sigh* Wish me luck!
-ETH
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Hey,
So today wasn’t so bad. I had to tend so some things in the morning and early afternoon that kept my mind really busy, they were some pretty troubling things — had to do with other people around me. I’d say it was enough to keep my mind away from any strong headache that could have been bothering me. By around 4-ish, I could definitely feel the pain, however, and it was bothering me. I just wanted to put my head down and sleep. It’s been the same ever since, but I haven’t gone to sleep. I’ve stuck through it.
Tomorrow, I’m tapering up on the Topamax to 100mg twice a day, making that 200mg total per day. I’m guessing that I’ll start to see these nasty side effects I’ve heard so much about. I know that I’ve definitely seen a lack of appetite and weight loss over the past ten days from the 100mg a day I’ve been taken. That’s no fun considering I’m already slender. Anyways, that’s my update for today, I’m about to take my last 50mg dose of Topamax and off to bed I go.
-ETH
Filed under: Uncategorized | Tags: advice, chronic, doctor, Family, Headaches, Health, Help, Medicine, Migraines, nagging, pain
Hey,
84th day today. I woke up this morning, didn’t feel much pain…I thought hey, maybe I’ll be free today… got some dull aches early on in the morning, but they weren’t persistent. Then at around noonish, I started to feel it come on, I didn’t like it…obviously. It stuck by me since then, and following the pattern got a little worse at night.
By the time my family came back home towards the evening, I heard more of their pestering about my headaches. That’s another topic I need to introduce to this blog. My family has taken this headache and made it their own pain and I can’t explain how much I hate that. As if I don’t have enough to deal with already, the people around me are making it SO much worse. I understand they’re just trying to help and they care for me, and I understand that, but I’ve been through these cycles a few times before, and I see a few doctors for my headaches right now. I want to stick by their treatments FOR NOW and see what can be done. When I’M ready to move on, then I will move on. HOWEVER, every day, I keep hearing about different things in Michigan, in India, in Europe, in Florida, in San Jose, on the Moon, in the Atlantic Ocean (you get the idea), of where I can get these different headache treatments. It’s one thing to care, but it’s another thing to care TOO much. They care WAY more than me, and I think that’s wrong. The best way for me to handle this situation is to be as stress free as possible about it and that’s what I like to do. The people around me aren’t helping. I like my modern, western medicine. Let’s see how the Topomax works out. Today was the 9th day I’ve been on it. In two days, I begin to double my dosage. In about five days time, maybe it’ll take effect. If not, then we’ll see what the doc has in store for me. Can’t we just do it that way?
I’m thinking about just telling them the headaches are done with. The cycle ended and everything’s great, and I’ll do my best job of playing it off that way so then I can just have everyone off my case. That way, the people around me don’t need to stress out so much, they don’t need to unnecessarily go out of their way for me, although it’s nice and much appreciated, and they can stop caring TOO much (ok, I’ll stop with the CAPS). Anyways, hopefully I’ll figure out what to do soon, but today was day #84 and whatever wacko chemistry is going on in my head…it seems to just keep on going on.
-ETH
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Hey,
So I’ve got this chronic daily headache problem that can’t really be categorized as any of the types of headaches (cluster, migraine, tension, etc.) but I deal with it. I’ve had two major cycles in the past lasting 55 and 63 days, the current one has lasted 83 days.
I’m currently taking Topomax (50 mg pills) twice a day, everyday, and hopefully after two weeks or so it should finally kick in and break this cycle down and end it. That’s the hope at least, I’ll up the dosage in a few days or so. All the other medications I’ve tried don’t work. There are, however, a few pain medications that work such as percocet and demoral, but I don’t like to take those because they knock me out or make me feel really tired.
Anyways, today I woke up with a slight headache, I went to the gym and hopped on the bike and did some easy biking, it wasn’t so bad. I then started doing some light weight lifting and I think I just started to feel it more and more then. Anyways, I think the headache just started to gain intensity as the day wore on, and that’s been the trend lately. It’s been wacky… a few weeks ago, the headaches were worse in the mornings, but they changed to being worse at nights. We’ll see how things work out.
Until tomorrow…
-ETH
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This is a blog about a headache problem I deal with. If it has any readers, then great. If not, it’s a log for me.
-ETH
