Case Histories - January 1999 #11

I have had this headache for 12 days now, I don't know how many days more I can do this. I got a call from the Neuro today he wants to do a spinal tap, tomorrow. WOW!!! He says it is because all the medicines he has tried me on isn't kicking this headache. What medicines? He hasn't giving me anything except Ativan a low dose valium. Take 3 tablets and see if you can sleep it off. Didn't work. Now he wants to do this spinal tap. I am scared of it. Plus, i am not sure of why he wants to. Maybe there's an infection or something. After 16 years of this don't you think they would have found an infection already? Here's my problem, I don't know if I should do it to show them I am willing to work with them, or is it going to be I didn't do it so they aren't going to be willing to help me anymore for the pain. Somebody please give me an answer. Estelle If there was ever a time I needed you it is now.
Berta <B1wall1000@aol.com>
USA - Date: 01/11/99 (Mon) Time: 10:47:34 PM

I have been having the save problem as Harry with the words running off the screen since Ronda gave us this new format. I e-mailed her about it because in order to read it I have to keep moving the bar - not a good way to read, especially if we have migraines! Only once since the format has been changed,did it go back to normal, so I thanked Ronda for fixing it, only for it to happen every time since. I try to read this page daily and I really appreciate it but...... What's going on? Maybe I need a "computers for dummies" book.?!
Carol C. <rid23153@ride.ri.net>
RI USA - Date: 01/11/99 (Mon) Time: 09:35:48 PM

I've suffered from migraines for 18 years and have been tried on all sorts of stuff. When Imitrex appeared on the horizon, it seemed to be the answer to my prayers. It always worked, but sometimes more quickly than at other times. Unfortunately for me, last year I developed hypertension and now my physician won't let me use it. Right now, I'm on daily verapamil (a calcium channel blocker) and Darvocet-N 100. Does anyone find himself/herself in my predicament? I keep hoping for another miracle drug that will address the pain without compromising my hypertensive status. Judi
Judith Blake <munrokid@yahoo.com>
Savannah, GA USA - Date: 01/11/99 (Mon) Time: 09:07:22 PM

Have'nt had any headaches for a couple of days now, but am trying to get used to the increase in neurontin. It seems to be making me tired now, and upsets my stomach tonight. Has anyone ever used neurontin for a preventative, and had these symptoms? I feel so lethargic, that I can barely move. It is hard to deal with these things, the cure is often worse than the disease. I just hate dealing with an increase, but I also can't be sick all the time from a migraine. I'm also feeling guilty, because we are behind at work, and others are doing overtime, and I feel like I want to, but my body is telling me no. Still, I hate it when co-workers make cracks that I don't need the extra money that overtime brings; I do, I just have to be careful. I don't want to risk it and get a migraine, especially with my body adjusting to this new increase. Thanks for listening to me vent. You all are appreciated.
Barbara B
USA - Date: 01/11/99 (Mon) Time: 08:32:36 PM

I am having problems with the format on this page. I can't read all thhe posting because they ru n off my screen. Anyone else having this problem?? Thanks for leeting me vent
Harry
ca USA - Date: 01/11/99 (Mon) Time: 08:13:59 PM

Help! Have any of you ever dealt with a doctor who just would not refer you anywhere? I am seeing a h/a specialist who is going about this treatment in a very routine - and positive - way, however, having been on disability since October I really want a more pro-active treatment plan. I have brought up the Diamond Clinic and Stanford Pain Mngmt Clinic and received negative responses to both. I don't want to be disrespectful to this dr., I just want to get better - and seeing him only twice a month just is taking too damn long. Any suggestions? Thanks for letting me vent!
Samantha <samandjosh@mindspring.com>
CA USA - Date: 01/11/99 (Mon) Time: 05:25:19 PM

TO KELLI: Your e-mail address must be wrong, so I'm posting what I wrote to you. Hi Kelli, Yes, my symptoms are very similar to yours. I sometimes have the flashes (in my case it's more like blurred vision), sometimes I don't. As for the weakness in my arms - yes I've got that too. I notice it the most when I raise my arm - it only takes a few seconds and my arms are all heavy. I get lightheadedness too but should mention that I also suffer from high blood pressure which could contribute to that. As far as medication is concerned this is what I've tried so far: 20 mg of Inderal (that's a beta-blocker - did not help at all) 20 mg of Prozac (seems to help a little in preventing the attacks) Right now I'm still taking the Prozac because it also helps me deal with another side effect of my migraines - depression. Ever since my migraines got worse I felt more and more depressed, first because nobody was able to make a proper diagnosis and I was convinced that I had at least MS. Then because when I was diagnosed with migraines it was hard to get people to understand what migraines are and how they really ruin your day. The other approach I'm taking is Acupuncture, I just came back from my second visit and can't really tell whether or not it helps. I will keep you posted though. All the best to you, don't despair, I'm sure someday we'll feel a lot better. Lucas
Lucas <muehlenweg@mediaone.net>
Los Angeles, USA - Date: 01/11/99 (Mon) Time: 04:35:46 PM

A few random thoughts in relation to other people's comments: Martha: I too have become sleepy or gotten a migraine in the middle of the glucose test. Emily: I am the opposite of you, I am big and therefore medicine does not help me sometimes. Someone earlier was taking about their doctor giving them injectable imetrex in different doeses which might be possible for you. Kristine: I too find my dreams influenced by migraines...i usually dream i have a terrible headache then wake up to find it is true. Arachne: do you know about foot reflexology, and pressure points in the eyes and hands? i can't say they always help, but it sure does not hurt to try. If you want to email me i can discuss these things further.
Dee <dsjohns@adms.purdue.edu>
USA - Date: 01/11/99 (Mon) Time: 04:21:20 PM

Does anyone share smell as a major trigger? It has gotten to the point where I cannot smell any kind of perfume without getting a bad migraine? When I lived with my parents, my mom has a heavy hand with her expensive perfume and I always would get nauseous form it but lately it's any perfume, especially the sweet florals like victoria's secret Pear or Plumeria from the body shop. Obviously I don't wear perfume, but when a coworker does it can be horrible. I gave a coworker a Plumeria set of soap, lotion and bath gel because, even unopened, the smell was killing me. Well she put in on in the office today and guess what came next? Luckily I caught it in time(so far) but it can be a problem when you are in an office of 30 people. You can't exactly ask them to not wear perfume, especially when they all keep the blinds closed for me as it is! does anyone have any ideas on what I can do to avoid this without alienating my office or quitting my job? Are there any scents that maybe don't affect like that that maybe I could keep with me to inhale? Please, I need some advice! Michele
Michele <mpisnoy@hotmail.com>
Jackson, NJ USA - Date: 01/11/99 (Mon) Time: 03:48:33 PM

Hello.I have been doing a lot of reading in the journalover the last 2 weeks. Whay really amazes me is how much,so many of us,have in common. Not just symptoms, but questions,fears,doubts.Can doctors really be so blind as to a Migraineurs suffering. I know my doc. thinks I am the only person in the world who's had a h/a for 2 straight years. And until I found you guys,so did I. I just wanted to say Thank You to every one out there.Have a pain free day. Kelly
Kelly <H2o366@aol.com>
TEMPE, AZ USA - Date: 01/11/99 (Mon) Time: 03:33:23 PM

Hi everyone, Sorry I made a mistake in the spelling of the medication that is helping my migraines as a preventative. It is called "Nortriptyline". Bye, Gen
Genevieve <marsgen@visi.com>
Plymouth, MN USA - Date: 01/11/99 (Mon) Time: 03:21:01 PM

I was just scanning through the journals and ran across Genevieve's letter. I use to have bad headaches as a teenager that only Excedrin helped. They just went away. Five years ago I pulled some muscle in my neck and caused a severe headache that kept me in bed for a few days. I was getting them once or twice a year and they were called "tension headaches". I started a pretty physically demanding job a few months ago and now I have these headaches 3-4 times a week. After visiting with my doctor he informed me that these were migraine headaches and tension headaches. He put me on Amitriptolene daily and Maxalt as needed. I don't know a lot about these drugs and they scare me. Not only that, but if I don't take the Maxalt when the headache starts than it does not help. My headaches are caused by stress on my neck muscles and my spine and after every headache I lose strength physically and my memory continues to deteriorate each passing day. I am 34 years old and am waiting for the day that I don't recover from one of these. My sister who is 12 years older than me has suffered from Migraines for 15 years now. She has black outs and memory loss also. We have both taken out life insurance because this is not something that seems to want to go away. If anyone has any suggestions or know of any specialists on this matter please Email me at vivian@wtp.net. Thank you.
vivian <vivian@wtp.net>
Columbus, Mt USA - Date: 01/11/99 (Mon) Time: 03:01:25 PM

hi, i'm 15, and have had migraines for about 2 years exactly. my first one was so bad i had to go to the hospital and it lasted for a week, where i learned it was migraines i was suffering from. i used to use a piill called darvocet to use when i had one, and inderal LA to prevent them, but last christmas '97 i had a migraine 15 out of the 18 days of winter break, so i switched to imitrex, and doubled my dose of inderal la. i know that imitrex is very helpful towards many people, but for some reason it was always makeing my migraine worse before it was made better. right now i still get migraines but my new meds. are zomig and tylenol w/ codeine for the pain and isoptin to prevent it. i was wondering, if anyone knows how to prevent a migraine or the nausea and dizziness, with ways other than drugs? --veronica
veronica <atthelight4615@yahoo.com >
west covina, ca USA - Date: 01/11/99 (Mon) Time: 01:04:10 PM

hi everyone, i haven't written in a while. i was away on vacation and took zomig ad got a unbelievably bad rebound the next afternoon. it was like a near death experience! so i've thrown away my zomig and wonder if anyone has had the same problem with immitrex. i am especially sensitive to rebound. the zomig erased my worst headache but it always returned. i wish there was something that worked as well but didn't have that side effect, a worse migraine. i do o.k. for most of the month alternating fioracet and darvocet but when i get my monthly migraine those meds don't touch the pain. any input would be greatly appreciated, wendy
WENDY <bluetulip9@aol.com>
stratford, ct USA - Date: 01/11/99 (Mon) Time: 12:17:03 PM

I am trying to reply to Kelli who keeps posting messages. I have not been on this site before, so I don't know if I can even post this message. Kelli, I have stoke type symptoms with my migraines. I slur, I fall down and my migraines just keep coming back. Try to find a Doctor (this is hard) who gets migraines his/herself because if not I find there is not a lot of compassion out there for these suckers. Anyway, if I did this right my email should pop up on it. Kelli - if not - post another message and leave your email. I am getting a migraine now so bye.
Pamela <jnplanders@earthlink.net>
Los Angeles, CA USA - Date: 01/11/99 (Mon) Time: 11:14:11 AM

Hi everyone - hope you're all having a better day today. Just thought I'd let everyone know (who didn't get to see it) that Good Morning America had a segment on migraines today. Of course, they didn't say anything that we all haven't already heard. And GMA only gave the segment about 2 minutes, so they didn't get detailed at all, but I have to give them credit: They did acknowledge that when a migraine strikes, it makes sufferers unable to function. Now, if only we could get a tape of it to send to all the bosses and family members who don't understand us! We could point to it and say, "See? We're not kidding - these things are NASTY!" Mostly, however, the segment talked about Triptans - touting them as the best thing to happen to migraines. They neglected to mention that some of us can't take Triptans. (Like me!) Oh, well, any press is good press, I guess. Here's a question for everyone - for those of you who wake up in the morning with a migraine - have you ever noticed any connection with your dreaming? Most of the time, I'm not even aware that I've dreamed at all (although I know we all do, every night). Those mornings that I wake up remembering the dreams, whether it's a nightmare or just something so strange that I begin to wonder about my mental health (like last night - a teddy bear that walks - what in the heck was THAT all about?) - I invariably wake up with a monster migraine. Anyone else ever notice that? Might the migraines be giving me those weird dreams? Or might the dreams be giving me migraines? Or might I just be paranoid about my head? Any theories? Well, hope you all have a pain-free day!
Kristine <KHatak4444@aol.com>
Brookfield, IL USA - Date: 01/11/99 (Mon) Time: 09:17:51 AM

Hi, I just wanted to let you know that if anyone suffers from migraines due to neck problems, I just went to the Mayo clinic and was prescribed Norytriptelene. I am not saying that it is the answer to everyone's problem but in my case it is really starting to help. I have been on it for close to 3 weeks now, and my migraines are lessening gradually. Since I had never heard of this medication before, I just wanted to share this information with you, in hope that it will help someone else by talking over it with your doctor. By the way, I am still looking for more information about woment who were chronic migrainers, meaning at least 3 migraines a week, and still were able to have a healthy pregnancy. Thanks, Gen
Genevieve <marsgen@visi.com>
Plymouth, MN USA - Date: 01/11/99 (Mon) Time: 09:00:06 AM

Hi everyone, hope you have started out without pain today, but I'm sure not all! I was wondering if anybody happened to catch Dr. Tim Johnson on Good Morning America. It must have lasted no more then two minutes, and he didn't really seem to compassionate about the whole thing. It was about migraines. He refered to it as a disease of the vascula system, a chemical imbalance causes the blood vessels to sweel, the nerves are irritated and the pounding. GEE, could any of us have said that? The difference between migraine and most other headaches is the pounding. Aura, dizziness, nausea, visual problems were so briefly mentioned that if I had sneezed I would have missed it. He claims there is alot of research being done, but it is very complex, (daaa) and the best preventative would be a beta-blocker to help keep them from getting too bad, and the new triptan medications to abort them. I've been on Inderal for 10 years to help keep them down, this is the new research??? I think we are learning more in this Journal with everyone chipping in their bits of information. No, what works for some will not work for all, but atleast we are hearing about what is out there. I resent all the drugs being used that are causing the rebound headaches that just keep them going for days. That really stinks!! I hope you have all copied down the addresses I wrote in the other night. There is so much information in there about the symptoms and especially the breakdown of the drugs. Please do your home-work, it might help some of us if we understand more. I think we can help each other more too, and that is what this Journal means to me. Have a wonderful day, all of you!!
Estelle <EstelleLouise@webtv.net>
Ma USA - Date: 01/11/99 (Mon) Time: 08:59:16 AM

I am a 44 yr. old woman and have had migraines since my early twenties. I had them frequently then and then they seemed to get better until lately. I thought I had figured out all the triggers, missing or delaying a meal, sleep disruptions, allergies, etc. Then about 8 mos. ago after a plane trip I had a tremendous migraine that floored me after yrs. of 3-4 a yr. Since then I've had a headache more often than not. It's not always severe, just throbs gently or not so gently on the right temple. I've tried eliminating coffee, adding coffee, sugar, sleeping more or less, aspirin as a preventative measure, no pain medication, on and on. Since the headache that never stops is not so bad that I can't stand it I haven't tried anything stronger than ergotamine which I use infrequently. The question is, should I get an MRI or further testing? Maybe there's a reason the headache won't go away. A couple times when it really started throbbing I felt like I was having a stroke and it scared me. My boyfriend looks at me like he thinks I'm exaggerating. He's seen me holding my head and throwing up when it was bad but I don't think he understands when I tell him this has been going on for 8 mos. Neither does my boss when I've called in sick 2 or 3 times. I think he thinks it's just an excuse to take time off. If he knew how many times I came in feeling like there was a little man in my head with a pick axe he'd understand. Anyway, thanks for letting me talk about this and I've gained alot reading the posts. Good luck to you all and God bless you in your quest for an ache-less cranium-Love, LISA
Lisa <TweetyLi@msn.com>
USA - Date: 01/11/99 (Mon) Time: 04:52:53 AM