Case Histories - January 1999 #4

I too have suffered the last 4 days of the most pounding, puking, god I want to die headache and I am tired of being told to go lay down in a dark quiet room, with a cold rag on my head. What the hell did they think I was doing already? This time I got some different symptoms. My left side of my face is tingling, and numb, along with my left arm and leg. Does this happen to anyone else? They say I could suffer from stroke like symptoms when I get the bad migraines. Does anyone else get treated like you area a junkie looking for narcotics any time you go to get help? I tell you I have had enough of it. Take care and i hope you all have a migraine free day
Berta <B1wall1000@aol.com>
USA - Date: 01/04/99 (Mon) Time: 11:54:52 PM

Hi I am a migraine cripple. I am an active 48 yr. old woman, I worked in the prison system until I finally gave up last year. I had to take off to much work. I see you other dear souls are having the same treatment I run into. I am at war with the new doctors. I spent Christmas in the hospital. They tried i.v. DHE well it helped but the sterioods made me nuts. I have tried everything to prevent them. I get the most relief from the Stadol nasal spray. My headaches are now two a week lasting 2 or 3 days. The doctors are so worried about giving drugs for pain. I have built a tolerence because I have had these things for 30 years. They started one every now and then to what they are now. I had a BAD ONE today. My husband took me to see the doctor for an injection of Demerol and Phenergren. It has worn off and now I have to fight to get Stadol ns. I was very suicidal recently. I am tired of being treated like a drug addict. I need to be kept on my feet until the Migraine runs it course and hopefully stops after Menopause. That is the way it was for my grandmother, and my fathers' stopped when he was fifty too. I am so sorry to see others getting them as often as I am but my doctor feels this an unusual case or else I just want the drugs or I am seeking attention!!! He is so far off. I have a wonderful husband and he helps me fight for my rights. He sees me at 2 in the morning lying on the floor by the toilet tossing my guts up and crying like a baby. Doctor says you do not wake up with the headache!!!! Those are the worst!! They are aalready up to a 9 or 10 before you are fully awake. I am so sick of trying new things. If I get strung out on narcotics so what? I can be weaned off when they stop. Well, I was happy to find the support here. It is midnight and here I sit aalready worrying about the next attack. I can not go on much longer like this. I have little energy to fight with any more I do not want to live like this. I waant to go back to some kind of school or work, but not like this. I am a burden on my wonderful family, especially my husband. I am a Christian but the easy way out looks better every time I have an attack. Thanks for listening. Peace and less Migraine I hope for all of you dear souls. Wendy
Wendy <kchar8262@aol.com>
E-town Eliaabethtown , Pa USA - Date: 01/04/99 (Mon) Time: 11:23:30 PM

I have been reading the journal for awhile and have posted my story in the past. The recent entries have compelled me to write in response to several things. I am a past health care worker, and I don't work due to my chronic migraines, TMJ, Trigeminal Neuralgia, and yes, I DO HAVE them all!!!! Don't think that the only reason an anti-depressant is prescribed is because the doctor thinks "it's all in your head". Serotonin and neurotransmitters play a part, and that part is that when we are in chronic or severe pain with a migraine, headache, IBS, whatever, we DEPLETE our "stores" of endorphins and serotonin can't move! The neurotransmitters can't fire correctly, and there just are NO MORE endorphins to help with the pain!! The serotonin can't get to where it needs to go! Think of it as a bank account that was stolen from without your knowledge!! This is true of ANY chronic illness, and not enough is explained to patients to help them "get the picture". We have to do our own research, as much as I HATE to say it!!!!!!! Anti-depressants, specifically like Paxil and Prozac, help sooner than later, but even they take 3 weeks to get going correctly. That's why exercise, pain medication, food, and alcohol can make us feel better right away! They REPLACE/GIVE endorphins, and "connect" the missing neurotransmission. If you don't believe me, try a web search on this! You will be amazed. It took a drug/alcohol counselor to draw me PICTURES before I understood!! I am NOT saying that you shouldn't have pain medication--just the opposite. Knowledge is power, and understanding WHY often helps (at least with me it sure does!). Often times we get offended at the medication without explanation, and I want instant relief, so I HATE waiting for certain anti-depressants to work! This is the classic "flight or fight" body response-we send out all our defenses trying to get rid of these damn migraines! I really want to see more research on the WHYs of migraines, and I do believe someone, somewhere is working on it!! I don't really care for the medical profession, even though I worked there for so long. The PEOPLE are great, but the stress, lack of time, insensitivity drive me nuts!!! I feel WE have to take our problems into our own hands, get information, and TALK to the doctors! Even if it costs an arm and a leg, takes a full hour, if they think I'm a pest, whatever!!! I REFUSE to let that awful negative attitude (mine and theirs) get to me anymore! In addition, someone else's post kinda bugged me. I wish I could go to my ER and wait only 2 hours for relief from a nasty migraine. AND ON NEW YEAR'S EVE TOO! That poor ER doc with all the wackos and car wrecks and disasters having to deal with an irate migraine patient. YES IT HURTS LIKE HELL---but it is NOT going to kill us!!!!!!! It only makes us WISH we were dead!!! In defense of the ER staff and that situation, I really think calling the doctor on the carpet for his attitude is not a good thing to do (I don't really like any ER docs "bedside" manner here, either). Think about how hassled he and his staff were on New Year's Eve. Lots of car wrecks, overdoses, heart attacks, etc. THOSE people COULD be dead in minutes. 2 hours is a blessing, even if it didn't feel like it! I had to learn to accept that I HAVE migraines, I WILL GET BAD ONES, I MAY have to wait for medical help. I do my own search, I am grateful for everyone's posts here, and I LOVE suggestions! I am now in charge of my care, even if it took awhile to get good care!!!!!! I DO take narcotics when needed, anti-depressants daily, anti-seizure medication, and I have had ALL those awful, expense tests. My periods/hormones bring on migraines, eating chewy/crunch food aggravates my jaw, and touching my face HURTS!!!!!!!!!!!!! Look to yourself for your triggers and answers to your worst migraines. If nothing else, ACCEPT the fact that we have these things. This message is for everyone, not just one person!!! Feel free to e-mail me if you want to discuss stuff or find web pages with great info. HANG IN THERE---there is power in empathy!!!
Carolyn <richardson_carol@hotmail.com>
Bremerton, Wwa USA - Date: 01/04/99 (Mon) Time: 10:54:00 PM

Reading through all these entries makes me sad...I feel your pain.I think we are all brave and strong. Thanks, Barbara B. and others for the support and info on TMJ and weather related migraines. The nerve blocks DO work. When I have a stubborn migraine, my pain management doctor, who is an anethesiologist, does one. It breaks the migraine immediately, and 99% of the time does not return for weeks. I an anxious to go the info and read up on it. Thanks for being there!
Brenda Martin <petsgalore@WebTV.com>
Dallas, Tx USA - Date: 01/04/99 (Mon) Time: 07:50:58 PM

Haven't been able to get back to the journal for a while but I plan to get caught up. I came across another great article from "The World Congress on Pain" www.pain.com under "Daily Pain Articles" concerning "Therapeutic blockade of greater occiptal & supraorbital nerves in Migraine Patients". I do know of several that these have helped w/diminishing the frequency &/or intensity of their headahces & the ablility to lower med dosages. This article reviews why the blocks can be successful & can have long-term results. Not everyone suffers the same types of migraines or pain intensitys & our triggers can be from a wide variety of causes. I just wanted to bring this option to those of you that are not familiar w/the procedure in hopes that it will help in finding relief to those that suffer. Nerve blocks can also be used w/great success in the diagnosis of your headaches & in finding the origin of your pain.To those of you that have joined the journal since the begining of November, www.spinalinjection.com is another great site to read about these. (I had previously posted this site along w/others that have been helpful in my search for pain relief & successful treatments). If you have any questions please feel free to e-mail me. God Bless
DC from OK <mcanfield@msn.com>
USA - Date: 01/04/99 (Mon) Time: 06:09:10 PM

Just a note to tell everyone of my fellow migraineurs that there is a good article in the upcoming(Jan. 11) Newsweek magazine on migraines. It really tries to explain why a migraine happens, what physically happens when we get a migraine. They really did'nt say a whole lot on the new meds out there, except to say that they go out of our system quickly, and that is the main reason the headaches seem to return. It was at least good to see someone trying to explain this. There is'nt anyway anyone can describe the pain and symptoms, though, unless you live with it. So far, today is a pretty good day, although I feel a headache trying to work its way in, probably just tension, more than a migraine. I am going to neurologists this week, and really need to talk with him about the fact that even with using Amerge as an abortive, the headaches still seem to last at least 2 1/2 to 3 days or more. I need to have something that will knock it out cold, so that I don't have to use two days of leave because of the two full blown migraines I had last month. We are starting a new entry system at work, and I am one of the ones currently trained in it, and I can't afford to get migraines like this. (My supervisor is expecting those who are trained to take the time to really use the new system and to teach others who don't know it at the same time, what a wonderful, stress producing situation that will be). The worst part about migraines is that you never know when you will be hit with one, except for the aura that sometimes happens before. Then, days to get rid of it. Good luck to everyone, trying to find the right combination. Neurontin has helped some as a preventative, but I still feel that it is not as good as the paxil. Too bad I had to go off of it because of other health problems.
Barbara B
USA - Date: 01/04/99 (Mon) Time: 05:19:30 PM

I'm a 50 year old female who has had migraines since age 24 and before that always had a problem with headaches. As I've edged into menopause they've become worse and more often. Now I can't even go to aerobics class because that seems to always trigger one anywhere from immediately after I exercise to several hours later. (I use to always wake up with the migraine.) My doctor says that it's "unacceptable" that I'm using so much imitrex so I've been sent to a neurologist in Seattle. He has put me on Neurontin and says that I can't take any more analgesics at all except for Zomig (2.5 mg) twice a week. The 2.5 mgs doesn't work for me. Anybody out there have help or comments? Thanks much. laura
Laura <Smeebage@aol.com>
Bellingham, WA USA - Date: 01/04/99 (Mon) Time: 02:53:05 PM

I want to thank everyone for writing in this journal. I check it often and it helps to read everyone's stories. My story is just the same still suffering after 23 years without a lot of help in sight. I want to see a pain specialist, but you have to have a referral and so far I haven't got anyone to referr me. My doctor wants me to try Sansert, and that scares me, but I guess I will give it a try. I hope it won't make me gain weight too. If anyone has any information on SANSERT Please let me know. I have read mostly bad things about it, and would LOVE to hear something good before starting it. I wish I had a doctor who wasn't so scared to prescribe pain pills for me. I guess they think I will be addicted, but instead I am addicted to PAIN!! I guess that doesn't matter, huh? I hope 1999 will bring us all some much needed relief, I'v been trying Feverfew & St. John's Wort, who knows, I'm just about willing to try eating the grass in my yard. :-) Take care everyone, I only hope things will be better!! Cheryl
Cheryl <cemmerke@aol.com>
Birmingham, AL USA - Date: 01/04/99 (Mon) Time: 02:09:37 PM

This is for Linda (& anyone else who avoids antidepressants because of the connotation of migraine being "all in your head"). This is NOT why they are prescibed. They are prescibed because they seem to work for so many of us as preventives (at least for awhile). This was a serendipidous finding & is thought to be because of the medications connection to the neurotransmitter seratonin, not because of depressions association to migraine. Brain chemistry is still poorly understood & admittedly, we're just "fooling around" with this stuff, but I say that anything that MIGHT work is worth a try.
Catherine <cadams@ilnk.com>
Jax Beach, FL USA - Date: 01/04/99 (Mon) Time: 02:08:27 PM

First of all a happy new year to all fellow sufferers. I have had migraines since I was 10 years old, first maybe one a month and by the time I reached my twenties I had 3 to 4 a week (and no life to speak of!). A miracle occurred when I was 38. No more migraines! Don't ask my why, it just happened. I was free of migraines until three years ago, when they came back with a vengeance. Worse than ever before and I was ready to "top myself"! I am no 54, have a migraine 2 to 3 times a month, lasting sometimes for up to three days. Medication doesn't really work. Over the years I have built up a resistance to most of them, or, when they give some relief from the headache, the side affects are worse than the actual headache! So I suffer, and not in silence, I am afraid to say! When things are really bad, my doctor gives me a shot of morphine and that usually does the trick. I have tried all the alternatives like acupucture, reflexology etc. etc. to no avail. However, recently a friend mentioned she had heard something on the radio about the connection between migraines and grinding teeth during sleep. Does anyone out there know something about this? According to my long suffering husband I DO grind my teeth during the night and I just wonder ... I'd be grateful for comments. In the meantime, make the best of it and enjoy the times in between! P.S. I made a typo in my e-mail address. It is westtech@indigo.ie
Hennie Walsh <westtech@indigo.ie>
Dublin, Ireland - Date: 01/04/99 (Mon) Time: 01:30:55 PM

First of all a happy new year to all fellow sufferers. I have had migraines since I was 10 years old, first maybe one a month and by the time I reached my twenties I had 3 to 4 a week (and no life to speak of!). A miracle occurred when I was 38. No more migraines! Don't ask my why, it just happened. I was free of migraines until three years ago, when they came back with a vengeance. Worse than ever before and I was ready to "top myself"! I am no 54, have a migraine 2 to 3 times a month, lasting sometimes for up to three days. Medication doesn't really work. Over the years I have built up a resistance to most of them, or, when they give some relief from the headache, the side affects are worse than the actual headache! So I suffer, and not in silence, I am afraid to say! When things are really bad, my doctor gives me a shot of morphine and that usually does the trick. I have tried all the alternatives like acupucture, reflexology etc. etc. to no avail. However, recently a friend mentioned she had heard something on the radio about the connection between migraines and grinding teeth during sleep. Does anyone out there know something about this? According to my long suffering husband I DO grind my teeth during the night and I just wonder ... I'd be grateful for comments. In the meantime, make the best of it and enjoy the times in between!
Hennie Walsh <westtech@indigo.ie>
Dublin, Ireland - Date: 01/04/99 (Mon) Time: 01:29:35 PM

First of all a happy new year to all fellow sufferers. I have had migraines since I was 10 years old, first maybe one a month and by the time I reached my twenties I had 3 to 4 a week (and no life to speak of!). A miracle occurred when I was 38. No more migraines! Don't ask my why, it just happened. I was free of migraines until three years ago, when they came back with a vengeance. Worse than ever before and I was ready to "top myself"! I am no 54, have a migraine 2 to 3 times a month, lasting sometimes for up to three days. Medication doesn't really work. Over the years I have built up a resistance to most of them, or, when they give some relief from the headache, the side affects are worse than the actual headache! So I suffer, and not in silence, I am afraid to say! When things are really bad, my doctor gives me a shot of morphine and that usually does the trick. I have tried all the alternatives like acupucture, reflexology etc. etc. to no avail. However, recently a friend mentioned she had heard something on the radio about the connection between migraines and grinding teeth during sleep. Does anyone out there know something about this? According to my long suffering husband I DO grind my teeth during the night and I just wonder ... I'd be grateful for comments. In the meantime, make the best of it and enjoy the times in between!
Hennie Walsh <westtech@indigi.ie>
Dublin, Ireland - Date: 01/04/99 (Mon) Time: 01:27:50 PM

I have found that the only thing that helps my headaches is Fiorinal. I am 4 months pregnant and have had some whoppers! My ob gave me tylenol #3 but all that did is make me sick. Does anyone know anything about taking fiorianl shile pregnant? Thanks.
Vicki West <VTWRD@aol.com>
Vienna, VA USA - Date: 01/04/99 (Mon) Time: 12:37:04 PM

Happy New Year everyone. I see that most of us are still suffering. Christmas was pretty good for me this year. I had a little bit of a headache, but nothing unmanageable. New Years was a totally different story. Woke up with a killer headache which turned into a full blown migraine quickly. We had plans to go out New Years Eve, and I didn't want to spoil it, so we went. Wound up spending time in the ladies room until I couldn't take it anymore. My head was throbbing so hard, I actually thought everyone could hear it. Of course, the band that was playing didn't help much. Went home and laid down immediately in a dark room with an icepack. My migraine kept getting worse and worse until I actually broke down in tears. Of course, that made my head pound even harder. Went to the ER where we had to wait for 2 hours until being seen. My husband kept going up to the nurse's station begging for help, while I sat there with my head in my hands just waiting for my head to explode right off my shoulders. FINALLY a doctor saw me and said he was sorry, but they had important emergencies. Well, thank you very much. If my head had't been pounding so hard, I would have told him off. Got a shot of Demerol, and was sent home. It really didn't help, but my husband rubbed my head and refilled the ice. I get my migraines in both temples and they were just throbbing. Along with the top of my head. The migraine finally let up yesterday and today, I still have a splitting headache, but at least it's manageable. I'm going to that hospital today to talk to the doctor in charge about the on call doctor's attitude. I was in excrutiating pain and didn't need his attitude! None of us do. Anyway, I hope 1999 brings a pain free year for us. Take care! Joanie.
Joanie
Allendale, MI USA - Date: 01/04/99 (Mon) Time: 12:28:13 PM

Sandy - I have IBS along with my migraines, but I got the IBS first. I've had it since I was 11 (I'm 28 now). In my late teens - early 20's it was pretty horrible and out of control. I made some minor change to my diet, and now it's completely under control (Thank God). Everyone is different, so what worked for me may not work for you... It's sort of trial and error. I didn't completely cut my dairy intake, but I did limit it. I found that I can have 3 servings per day, no more. (I count things like AuGratin potatoes as a dairy serving). I also had to give up my favorite Ruffles French Onion potato chips - they set me off for sure! I also had to quit Sauerkraut (gee, are you surprised?) and of all things, Chicken. Strangely enough, almost every other kind of junk food is OK for me. There are also some meds out there that work OK, but with those diet changes, I don't have to take anything for the IBS anymore. And don't worry - my doctor assured me that IBS, although painful and annoying, is not life-threatening. You CAN control it. My doctor also told me that Migraines and IBS go together quite often. Apparently, they cycle together, like a wheel - You get a migraine, and the stress of that sets off the IBS, then the stress of the IBS makes the migraine worse, and so on. When they start cycling like that, if you can break one pain, the other may lessen. Hope that helps you! And I'm wishing everyone a pain-free 1999!
Kristine <KHatak4444@aol.com>
Brookfield, IL USA - Date: 01/04/99 (Mon) Time: 12:03:07 PM

Happy New Year! I know I have written this before, but to anyone who has not tried FEVERFEW, try it, try it, try it!!! I have never felt so good with absolutely no side effects. I take 2 a day in the morning for 6 weeks now, and my daily headaches have decreased to maybe one a week. It is inexpensive and all natural so you don't have to worry about lots of chemicals doing any further harm to your body. I realize that this may not work for everyone, but I STRONGLY recommend it. I've felt so good that I no longer depend on reading this journal every day just to help me cope. My life is getting back to normal, finally. Thanks for listening and good luck!
Jenni <splashes@telusplanet.net>
Canada - Date: 01/04/99 (Mon) Time: 11:29:09 AM

Hi - it's me again (28 y/o female, suffering for 8 mo, disability for 3 mo). Anyway - I have been taking Neurontin three times a day for a few of weeks now and have had zero results. My new doctor is a headache specialist and I don't think he is too proactive with strong pain relievers. He is more into yoga, exercise, relaxation, etc. Has anyone had any relief with this? I haven't and have been trying for about a month now. I could really use some help here, it is getting desperate for me and my marriage - I just don't want to go on some days, if it wasn't for my son.....well, I think some of you know how I feel. Sorry - I just had to vent.....it's getting pretty lonely around here....
Samantha <samandjosh@mindspring.com>
Sunnyvale, CA USA - Date: 01/04/99 (Mon) Time: 11:28:12 AM

Hi, it has been along time since I wrote anything here. I have changed doctors and this current one also has migraines. I feel a little more confident discussing them with her knowing that she understands. My insurance has changes policies and I can go back on Paxil to reduce the intensity of my migraines. She is also trying Maxalt with me. So far it has stopped each migraine I used it with. I only had three pills to try before getting a prescription. I call today for that. Yesterday I woke up with a blinding migraine and stayed home from church. I hate that but it was the first time in years a migraine had stopped me from going to church. I hope everyone does well today and the rest of the week.
Sonja Sides <chris@webzone.net>
Skiatook, OK USA - Date: 01/04/99 (Mon) Time: 09:17:02 AM

RE: Serentil...also called Mesoridazine, it is an anti pyschotic used for schizophrenia. Whenever a DR suggests or prescibes me a psychiactric drug I have said "no". I feel we should be open to new meds, we're all seeking relief, but so many DRs are prescribing antidepressants & other drugs that are mainly used for psychiatric disorders it worries me that still after all this time the DRs treat Migraines as "all in our heads". Does anyone else see it this way?
Lynda <rkells@ttlc.net>
USA - Date: 01/04/99 (Mon) Time: 07:52:52 AM

Hello, I am also one of the unfortunate people who suffer from migraines. I have had these since I was a teenager and will be 47 tomorrow. The doctors have tried many medications to prevent these with no help. I do think that they have become less frequent in the past 2 or 3 years, but more severe when I do get one. I have the classic aura with mine and when this comes on I take a medication called Midrin. I take two at the onset and follow up with one every hour up to a total of 5, if I am unable to get them down due to the vomiting then I have no choice execpt go to the ER. I am usually given Demerol and Vistaril, which usually will get rid of it, but then I am goofy for several hours later......I have found that most of my migraines seem to come around that "certain time of the month" and if I eat chinese food or especially chocolate during this time my headache will be more intense. I have a good doctor that is very sympathic to my headaches and for this I am grateful. I also find that if I take my Midrin, go to a dark room and lay down with an ice pack to my head it helps....I have stress headaches just about evey day but I can deal with these, it is the ones that cause such severe pain I have trouble dealing with. If you have not tried Midrin I suggest that you discuss this with your doctor and give it a try. Your have nothing to lose..it is not a narcotic and you can even function after taking it. I just hope that all of those who have never experienced a true migraine, never do, and ask that they try to be a little more understanding. Happy New Year to all.......georgia
Georgia Reed <elr@ou.edu>
norman , ok USA - Date: 01/04/99 (Mon) Time: 06:14:07 AM