Journal of Migraine Sufferers

Dear Ronda and readers,

I have just been diagnosed as having migranes. It started last week when I got a mild headache on the left side of my head. I didnt think much about it because my period decided to start a week early, so I waited. The headache continued for the entire week, always on the left side, either starting on the top of my head and eventually working its way down to either my neck or behind my left eye, or both. The pain worsened and lessend as the days went by. None of the pain was completely unbearable, but I began getting dizzy spells so bad I could barely stand up. As I sit here now there is mild to sharp pains in the left side of my forehead. The doctor gave me something called Prednisone, a drug I've never heard of, nor have I seen it mentioned in any of the case histories I read. I am apprehensive about taking this drug because I was told it was a steroid/anti inflammatory drug, and could make me really sick. Well lucky me, I was treated a year ago for an obsessive compulsive disorder. I have a very strange and neurotic fear of vomiting. Any input on what this drug may or may not do to help/harm me would be greatly appreciated. My heart goes out to you who are suffering so terrible from these headaches, and I sincerely hope you all find relief. I am scared and unsure about what to do. Thanks,

---J.Tarbell Tarbell@concentric.net


I have been having migrane since kindergarten I'm now 31! I remember getting so ill in school, I had the counselor tell my mother once that I was faking it so I didn't have to attend class. I feel that If I hadn't suffered I would of been better off academically. I feel that people need to be educated that tylenol and migrane does not go hand and hand. I have been to the neurologist, had MRI, CAT you name it. I've been having new episodes lately with left side numbness, the silver lines, lost vision in which I can't focus and see only half of images. Speech is slurred, etc. Doctor just put me on Midrin again. It does not work, plus Fiorinal, Inderal, Open the cabinet it's in there. I don't like taking a daily dose of anything, I have 4 children. I cannot cope any longer. I know that my husband might feel that its a excuse. Lord I would love that it was. I have been searching for answers and a common bond with another sufferer. I also get sinus headaches that turn into migrane. I am very happy to have reached this web page. Thank You

---Deanna McNeal dmcneal@infoave.net


Dear Ronda and audience:

I would like to share my experiences with what may be a migraine variant.

First experience: While sitting in an easy chair, I suddenly felt as if I was slipping into unconsciousness. I told my wife I was "going under". I didn't, but it was a very frightening experience. It lasted about 10 seconds.

Another day I had a persistent headache. Soon, I realized that I suddenly felt extremely and acutely strange. This feeling was accompanied by a tingling rushing up my spine, around my scalp, and it was followed by a numbness in my right hand that climbed up my forearm. I felt I was going to lose consciousness any second. I fell into my chair. The receptionist called an ambulance. By the time the ambulance arrived, I no longer had the symptoms I had only ten minutes earlier. The only signs were a high pulse-rate and somewhat elevated bloodpressure. I felt sluggish the rest of the day.

Weeks later, I was driving to town with my wife. I was feeling anxious and tense. Soon, I felt a multi-faceted rush of sensations. I felt lightheaded, there was a tingling sensation all around my head, there was a buzzing in my ears, my mouth became dry, and I had that sensation of imminent loss of consciousness. I pulled over to the side of the road and got into the back seat and lied down. My wife drove me to the doctor but the doctor could neither explain or treat the problem. I felt devastated and exhausted. I was dizzy, groggy, and unable to think clearly. All that night my vision had a haziness to it. There was a haze around lights and the numbers on my alarm clock. The next day I felt dull, lethargic, and withdrawn.

After several of these episodes I can describe to the best of words the worst of these episodes, typically in three parts: I - Prior, I have a general uneasy and disorderly feeling. I feel anxious and irritable. I have a feeling I need to do something or take care of something but nothing I can do will make that feeling go away "unsettled". 2- Suddenly I feel ill. My head feels full and tight as if a wide band is wrapped tightly around it. I hear a buzzing sound and I feel a tingling sensation creeping up my arms, surrounding my head, and moving up and down my spine. I feel alternating hot and cold sensations. I feel bizarre. I feel a sense of impending doom. I feel I may pass out but do not - the feeling is akin to pain but not exactly painful, but every bit as frightening (and hard to explain). My throat tightens. My chest swells. I am in a complete mental stupor, almost delirious. I have to lie down. Lying down I begin to shiver and shake. My teeth chatter. I nearly convulse, and barely maintain until the horrid symptoms peak and then slow unravel. 3- As the more abrupt symptoms wane I have a residual "hangover" feeling; a languor or mental haziness that slowly diminishes over the course of days. During this time, I see a haze or halo around bright objects such as car headlights and streetlights, and my concentration is poor. Eventually the episodes diminish. After a week or longer, the hangover dissipates.

These episodes occurred for about three years. Doctors offered no explanation. Medical tests and scans showed nothing. I worried that I might be suffering from transient ischemic attacks indicative of possible stroke (unusual for age 38), or that I was becoming epileptic. I also read about acute panic syndrome but the symptoms didnít quite match. I fought these bizarre symptoms with exercise, heavy sleep, and relaxation techniques. The symptoms came and went over a three year period, finally ceasing altogether for about four years. Recently, however, they returned. Over the last six months I have had three episodes. Also, recently, my blood pressure has been high. A correlation?

I have had recurring headaches since I was 13. Over time, I had several bad headaches. Several of these headaches lasted as long as two days. Only the combination of aspirin, seclusion in a dark quiet room (any light hurt), and heavy sleep were the only treatments which had positive effects. Drinking beer, ale, or wine would cause much more of a profound headache than warranted for the small amount consumed.

Seven years later while reading about migraines on the internet, I pursued the connection further and found partially similar cases to my own. Through self-diagnosis, I became a believer that I was suffering from migraine. Recently reinforcing this belief was a visual aura I had experienced followed by a headache. Because I told my doctor that my headache was felt throughout my head (instead of on just one side per the textbook) he said it was not a migraine. Later, another doctor thought I was having cluster headaches (suffered more by males). I am very frustrated with doctors by now. I found case history that migraine is often suffered in both hemispheres of the brain. In addition, upon closer self-examination of my pain, I have had headaches start behind my right eye and then build until all of my head hurt. Indeed, by all accounts, I suffer from migraine. Although the more bizarre symptoms are hard to pin down, the visual aura I experienced was described and illustrated perfectly in migraine literature.

More to the point; in addition to the headaches I have suffered, I believe I may have been experiencing what I've seen described in literature as migraine equivalents, variants, and migralepsy. I can only give you a description of the terror I have felt about this and not knowing what was happening for seven years.

I am eager to hear of similar situations becuase I have a fear about the possibility that I am wrong about my self-diagnosis. Let me know what you think.

---J.R. asiwa@usa.net


I wanted to say thank you for making me feel as though I am not alone in this. For so many years I have felt so completely alone. My migraines run my life. I have almost no friends, have been married and divorced, and am hanging onto my current relationship by a thread. I wish I could be more positive and sit here and write you of a wonderful success story but I can't.

All I can do is tell you how I feel and hope that someone else can relate and realize that they are not the only ones who feel this way. Many days I would like to just give up. Throw away all the pill bottles and let life take its course. I have suffered from migraines for about 10 years now. I am currently 24. I have been on what seems to me to be every medication possible. I've tried alternative medicine. I even begged my gynecologist to do a hysterectomy on me when I was 22. Of course he declined. There is something extremely wrong with a physical condition that so many people suffer from and yet there is no "cure". As a sufferer you can attest to the fact that no one who has never experienced a migraine can understand the true magnitude of the pain. Doctors, friends, lovers, family, they all look at you absolutely dumbfounded. And to try to explain is pointless. My course of treatment has brought me to a new neurologist and "a plan". To complicate things for me I have Addison's Disease which affects the adrenal glands. I MUST take my medication or I will become gravely ill. Of course the vomitting that comes along with migraines makes this extremely difficult.

Therefore, I may choose to seek treatment from an E.R. sooner than most because it becomes a matter of life and death for me the longer the migraine lasts. I have reached the point where even a shot of demerol/visteril doesn't even phase me. I remember a few years ago when they started using demerol on me, I thought it was a miracle drug. I believed it to be the cure all when none of the other pain meds worked. I would be looped before I could even get to the car. Now I feel nothing, no relief from my head, just desperate. The hardest time was when I had an eight day one and on my third trip to the E.R. in two days the doctor told me to go home and sleep, not to cry, it would only make it worse. He tried to explain to my fiance that I needed to remain rational and calm or it would get worse. I could have strangled him had I had the strength. There have been nights where the pain has peaked and I have found myself in the bathroom banging my head against the wall, crying uncontrollably, with a bottle of pills in my hand.... Am I the only one who gets that desperate? My fiance cannot understand this.

Right now I live my life in what seems like constant fear of the next one. I consume pain killers like candy. BUT all I can say is I am extremely lucky to have the man I do in my life and family that tries desperately to understand. Without them I don't believe I would still be here. You need to find something good in your life and not give up on that even in the worst moments. Because that is what keeps you going...going to the doctor, pharmacy, therapist...Hey, whatever keeps you hanging onto life is worth it. I don't believe I am the only one who has reached the point where their migraines were so bad they actually considered suicide. Right now I am going on my third day without a full, true migraine. I can be a little more positive, as I'm sure you all can relate to.

One thing I would like to stress is a huge pitfall I ended up in using pain killers, prescription and OTC, which is rebound headaches. What once helped me now hurts me. Somewhere here on the internet, possibly one of your links Rhonda, I saw where someone had provided information saying that as long as your pain is real you will not become addicted to pain killers. This is deffinitely not true. It happens to the best of us. Good intentions lead us into bigger and better problems.

My daily diet consists of multiple doses of Lortab7.5mg tablets, some Ultram, Tylenol and my prophylactic meds. With seeing my new neurologist we have made some modifications. He has started me on Nortriptyline and Prozac and Daypro and is asking that I try to taper off the Lortab. If I am unsuccessful in this he has discussed a 5 day inpatient stay at the hospital here where he would hook me up to an IV and give me DHE45 every 8hours and ween me off the other pain meds while compensating for the migraine that will undoubtedly occur with the DHE45. We will just have to see how it goes. If anyone out there has been through similar therapy I would appreciate any input you may have. I am also curious to know if anyone else experiences the same side effects from the medications that I have.

While taking Nortriptyline and Amitriptyline I started experiencing nightmares so frequently that I was getting little or no sleep and even reached the point where I was almost afraid to try to go to sleep because I didn't find the nightmares to be easily dismissed. I have been told that this is a side effect of these two medications. But has anyone else experienced it to that degree? It was like living a Nightmare on Elm Street movie. Also, I used DHE45(dihydroergotamine)IM shots on myself for quite a while and then suddenly began experiencing what I call panic attacks after giving them. I tried using it several times after the first "attack" and only found them to be getting worse. No one had an explanation for this, they simply told me to quit using them. So, if anyone else has used it and had similar side effects I would be interested in knowing. It would appear that I have babbled quite enough. I sincerely hope this account of what my life is like is helpful in some way to another sufferer. Remember, you're not alone. Best wishes to everyone out there for a safe and pain free holiday.

Thanks,

---Penney JustaPeney@aol.com


BACK     INDEX     NEXT