Journal of Migraine Sufferers


Sandra, read your post. Hope you feel better soon. Going through something similar at work, think the only thing worse than feeling this bad is not being taken seriously by those around you. I came back to work after a month of disability due to hepatitis and got written up the same week for poor job performance because I told them that I had lingering problems and don't feel well most of the time. Over the hep, but can't help having the migraines, and they don't want to hear it. Now have to go through the medical wringer again, a frustrating journey as you well know. Have you tried getting advice from legal aid or some such organization in your state? Good luck, I hope that it all works out well for you. Posts like yours make me feel like it's all so unfair sometimes. Take care, Barbara
Barbara
USA - Date: 01/15/99 (Fri) Time: 11:10:22 PM


Hi everyone, I, too would like to know if anyone has had any luck with hypnosis (or biofeedback). These are about the only things I have not tried! Also hoping to hear from more people who get headaches from tea. If you do, is it all teas? or would decaf tea be OK? These trial and error things are so hard to figure out! I do try to limit my overall caffine intake. Thanks for all the continued info!!
Dee <dsjohns@adms.purdue.edu>
USA - Date: 01/15/99 (Fri) Time: 03:01:06 PM
Thank you so much to everyone who responded to my cry for help with smells causing migraines. I got some really good advice and was just amazed at the show of support. This page is so amazing-I am so grateful to have found it! My head has been really bad this week. I think the weather with all the rain and snow has been the cause, but the regular meds haven't been working. I go back to my doctor next week and I am going to ask to go back to the imitrex. I take Zomig now and it doesn't seem to work as well as the imitrex did. Has anyone else found that as well? Are there any others I should try? Thanks again for all your support and for just reading what I type. Michele
Michele <mpisnoy@hotmail.com>
Jackson, NJ USA - Date: 01/15/99 (Fri) Time: 02:41:16 PM
This is in response to the entry regarding weight gain. I'm on 100mg of elavil a night now. the doctor increased the dose in Christmas. I've gained 5 lbs. that may not seem like a lot but I'm real careful with my diet and I exercise everyday. I guess I'd rather gain weight than have these horribe headaches.
Pat <marksfam@ameritech.net>
Cary, Il USA - Date: 01/15/99 (Fri) Time: 01:57:07 PM
In all the newsgroups, websites, etc there is one thing that I experience that I havent seen anyone else mention. Maybe I have missed it. I was wondering if anybody else experiences problems with speech and hearing. My family tells me that I talk in jibberish during a migriane and they have difficulty understanding me. I also have noticed that when people talk to me during a migraine that I have alot of time understanding them. It seems they are talking in jibberish. Does anyone else experience this????
Tami <tamisomebody@hotmail.com>
USA - Date: 01/15/99 (Fri) Time: 12:55:33 PM
I'm posting this not to make anyone feel bad at my good luck but to let you know that once in a great while, we make out okay with the insurance demons. I just got, in the mail, 9 double packs (18 injections!!) of Imitrex for a co-pay of $10. That's it!!! I feel like I hit the lottery. I'm luckier than many of you and don't even take it all that often (2-3 times per month) but every time I use one, I worry about replacing it so I'm prepared for the next headache. This isn't about gloating - I truly feel your pain and I honestly don't know how I'd cope without insurance and I hurt just reading some of your stories - but I know I'd be happy for anyone who could "score" like this. (God, I sound like a junkie, don't I?) Good luck to each and every one of you.
Grady
USA - Date: 01/15/99 (Fri) Time: 12:44:30 PM
Howdy everyone:) I am a daily reader of the journal, but an infrequent poster to the journal. I wanted to say thanks! to everyone who describes their symptoms because....yesterday I had my first "aura" (sp?) without any pain. I had little zigzag lights zipping all around my field of vision. Had not so many of you detailed such happenings, I would probably have freaked out completely. Since I knew what it was, I was able to stay calm, take a pill, and continue working. I did have a real head-banger later in the day, but was able to keep it to a dull roar. Anyway, thanks to everyone who posts here. Rhonda...you have many readers who are gratefull to you. Have a pain free day:) Louisa
louisa
austin, tx USA - Date: 01/15/99 (Fri) Time: 12:28:48 PM
Thank you to those who e mailed me about my 6 yo daughter. Is there anyone reading this that has a small child with abdominal migraines? What have you been doing? How do you handle school? My daughter is sick daily and I FORCE her to go to school. Yesterday I knew we were in for a bad night when she got in the van and laid down. As the circles and colors around her eyes changed and darkened , the worse she became. The doctor offered to teach me how to give shots, so I can give her demeral instead of the er. The screams in her sleep tell me her stomach pains are still here.I carry a portible toliet with us. If I can I bring a wagon so she can lay down when we go to parks, amusement centers, etc. We have not been able to enjoy even the simple things any more. A trip to see Santa, the fair, the park, all bring about those dark circles on her eyes, then the vomiting, screams and doubling up.We cancelled the Disney trip we had planned for Xmas break. The school is unhappy with her absences.I plan to start checking home schooling. Is there nothing that will work. NO child should suffer like this. Some of the doctors are ignoring us now. They say there is nothing left to do. Very few meds left to try.They say they are sorry and hope I understand as they hang there head down and walk away. Understand.... NO...My baby hurts and I can't fix it. Please, someone help us find someone who can stop this nightmare and ease her pain. Thank you, Vicki
Vicki <9999@atel.net>
Wmbg, Va USA - Date: 01/15/99 (Fri) Time: 12:14:28 PM
Just curious since I am new to migraines. Never had them in my life and now all of a sudden at 40, I get them? Spent about two months messing with my Dr. who finally referred me to a neurologist who I just saw this week. Said my "visit" was fine, but will have an MRI and EEG. In the mean time take Depakote. If in fact mine are migraines, I do not get bad headaches, only irratating ones, but really really sensitive to light. Almost constantly! Is that common to any of you, or only when you have a headache? Also, many many time I feel small jolts in my right temple area, but not necessarilty "flashes" Some days, they can go on almost constantly..very wierd. I usually feel stranger as well during this time period. Light headed paranoid (for lack of a better word). I really am hating it..
Mark <MChris000@aol.com>
Sac, USA - Date: 01/15/99 (Fri) Time: 12:01:34 PM
has anyone every tried hypnosis to deal with the migraines? i am at the end of my rope and willing to try anything and just wanted to know if it was a waste of time and money, or worth a shot! Please let me know if it has been tried by anyone else.
alicia dagosta <alicia.dagosta@kutakrock.com>
Omaha, Ne USA - Date: 01/15/99 (Fri) Time: 10:50:59 AM
I know this sounds crazy, but soo many people in the journal complain of weight gain with their medications. Some say 30lbs, 50lbs, 10lbs, etc.. Is it true that medication makes you gain weight. What kind, what is your input? I am apprehensive about going on medications and gaining 30 plus pounds. ANY INPUT? DESI
Desi
cherry hill, nj USA - Date: 01/15/99 (Fri) Time: 10:34:42 AM
Hey there to all my migraine buds! Does anyone know what happened to LINDA, the one that has twin grandbabies out in California? I haven't heard from her in ages and am worried about her! Usually she writes in the journal, but I haven't seen a posting from her in a long time!! Do any of you know who I am referring to? Thanks!
Jana <JTROUTEN@aol.com>
USA - Date: 01/15/99 (Fri) Time: 10:33:07 AM
Dearest Friends, (HELP PLEASE!) I am coming to you , fellow sufferers' because I am at my wits end. Literally. I am so depressed and confused, I don't know where to go. The situation is, I have been extremely ill due to my migraines since Feb of 98' due to a job mishap. I was placed in a position (cubicle)at work, where I could inhale all fumes, paints and what-not from the nearby construction site (indoors). I sat just a few feet away. At that time my Major Telecommunications company was doing major renovating. I asked security and management numerous times to either be moved or if they could place some type of ventilation around so no one would get sick- Including myself. Nothing was done to say the least. I was told by a security officer at that time that I was complaining over nothing. The 'headache' would pass; and that all women get headaches'. Well, since then I have been so ill that I ended vomiting blood at work and had to take FMLA( Family Leave of Absence) which is medical leave for almost a year and a half.. I have intense migraines that jeaopardized my productivity and my career. I now would have to re-apply to my job and may possibly not get rehired. I have been to five neurologists and numerous doctors,. I ended up in the emergency room numerous times to get shots of demerol and to try to replenish my fluids with bags of I.V. Usually on a weekly basis. Now, I have been denied disability (Social security) because as per the worker, "I need to be blind and crippled", to be qualified for disability. My insurance company (UNUM) thru my job has held on to my claim since last year. They are bsically trying to dismiss all my medical claims, notes, journals, and test findings. They are trying to prove that I had the migraines prior to that day in the office. They see no revelence to my illness and my job. They are in the process as we speak of denying my claim as well. As per Workers Comp,(which I was not told until a year from HR, to file)that I was fine. There were no findings to justify my illness as per Workers Comp. I am appealing. I was sent to San Francisco to see a quack neuroligist that charges $350.00 per visit- all he did was state I may ''possibly''need to see an emotional therapist for stress! He as well stated to Workers Comp that my claim was not worthy or substantiated. Not once did he listen carefully to my pleads of help! He did not once want to hear of my pain, nor of my major concerns of excessive vomiting of blood. I am so tired of it all.. I am tired of crying myself to sleep continously. I am consistently trying to explain to doctor's,neuroligists and the like that this pain is not just in my imagination. I am practically penniless due to all the major mediations & doctors appointments I have had to make to due to my weakness,dehydration, pain, vomiting and so-on. I am hurting. I feel at times why even bother anyone anymore. No one cares in this day in society for others as it once was. For example; I was up from 3:00am until 6:00am this morning trying to relieve a migraine. I feel as if I'm alone. I did feel a little better with an Imitrex injection and Midrin- but, I'm just masking the pain with more nausea. Please, can some one help with any sugestions or referrals to attorneys. I feel so lost. Thanks for listening... God Bless Everyone.. Sandra Jackson
Sandra Jackson <Robsandy1@prodigy.net>
Sacramento, Ca USA - Date: 01/15/99 (Fri) Time: 10:16:43 AM
To Dianna~ hope you made it to Conn ok & that it's not as severe a snow/ice storm there as it is up here in NH?! I tried to do the SunDance for you but it made my head hurt! LOL, oh well... After a few months of not working, first sick time, then leave of absence because of the Migraines & finally quit in Oct, I started a very limited part time job last week. I got a Migraine in the middle of the night after the first day of work. I did only 3 hours yesterday, after waking with a headache but gradually did alright. Woke with another tension type today but lucky I don't work today. My husband says it's not worth it. He wanted me to at least take the winter off. My few hours doesn't add up to much money wise but I feel I have to try. If I don't try to work I feel the Migraines, finally after 33 years of them, have got the best of me. I've given up too much in my life because of the debilitating pain, too many regrets, cancelled plans, disappointments. I'm lucky I'm not a single Mom or trying to make it alone. Some day soon I hope Migraines are accepted as a DISEASE, so DRs, employers,insurance co, & co-workers will understand that we have no control over it, the same as if we had diabetes, asthma, Chron's, or Epilepsy. We need accceptance, the right medication & better laws to help us in the work place. Good luck to all today~
Lynda <rkells@ttlc.net>
USA - Date: 01/15/99 (Fri) Time: 09:33:13 AM
Thanks Ronda for the new format and the place to support each other. Barbara B.- My job is putting alot of pressure on me, too. And they don't understand illness. You would think they would understand since I am a health care worker,but no way. I missed my first day of work yesterday in six months and you would have thought I broke all ten commandments! All I get is "you sure are sick alot" and my supervisor said on the phone today that I have to start taking care of my health! Yesterday would have been five 12 hour shifts this week, how can that contribute to good health? It is all very frustrating. Some of us are not blessed with perfect health. Where is that magic wand? I can say it helps to read everyone's comments and feel that someone, somewhere understands. Ronda, it helps alot. Thanks, everyone for being there! We made it another day!
Brenda Martin <petsgalore@Webtv.com>
Dallas, Tx USA - Date: 01/15/99 (Fri) Time: 04:09:11 AM
Dear Kris, Thank you for your reply; I didn't get your e-mail as we are having problems in that area. Since my recent episode I have had lightheaded times without the pain but usually within a few hours that same old pain hits me. The medication that I am on is 6mg of Methysergide and 25mg dothiepin hydrochloride daily, my neuro calls this a preventative "cocktail". For pain I usually take codiene based meds and when things get really rough an injection of pethidine and anti nausea drugs. In Australia sumatripan type drugs are too expensive for me because of the frequency of my headaches, approx $15-$18 per tablet and I need to take two and they don't always work. Thank you again, maybe you could give me your e-mail address and when we sort out what's going on with ours I can contact you. Linda
LINDA
Sydney, NSW Australia - Date: 01/15/99 (Fri) Time: 01:15:45 AM

 


BACK     INDEX     NEXT