On-Line Migraine Journal

The on-line migraine journal is intended to be an area for migraine sufferers to post their migraine histories and experiences.

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Hi everyone!

ALL who write in this journal RELATE to how we each feel or have felt dealing with migraines. ALL the numbers of meds we try, the alternative treatments, etc., etc., so I am going to try and give short versions to get to the point. Please bear with me.

I'm 54. Migraines have been with me since 1990. 2006 they discoverd I had a PFO. A hole in the heart which causes you to lose rich, oxygenated blood from your heart to your brain. Causing blood vessels to constrict. Thereby, migraines! Put me on aspirin, beta-blocker and a "non" narcotic pain pill...which only works on low level migraines.

The relationship between the migraines and the PFO was FAST becoming MORE common NATION wide as the next two years passed. My doctors were implementing new treatments and our goal was to cut back the frequency and the intensity.

July 1, 2008 I was offered a 3-month trial of botox injections. The botox company had given my neurologist free samples and I only had to pay a small fee for the adminitration of the botox. My insurance approved this trial.

The next 3 months were migraine FREE!!!! I could not believe the benefits the injections had provided! I was a new person...I felt like I had a life again.

Then when my neurologist and I wanted to do another set of injections...my insurance company DENIED the botox injections! They denied the appeal! Denied me GLOBALLY. Reasons...not FDA approved. Not "medically necessary"...despite the superb results. They said they could not approve it because all they had were like 6 years of studies. That is not enough for them.

Of course, if I had $2000 dollars out of pocket...I could get the injections. Yeah, I'll toss them that in 20's!! LOL!

My question. Has anyone had botox injections and had positive results and did your insurance company cover ANY aspect of this treatment????

I've LOST hope. Finally FOUND WHAT would benefit me more than I could have imagined and now I CAN'T afford it.

Email me if you wish to offer any response. Just put "responding to journal" so your email won't go to spam!

Be well! HUMOR: never leave home without it!!!

connie s. <rebelcas@yahoo.com>
Friday, January 9, 2009 at 21:21:09

Hello everyone. I wrote about myself on here back in June. I haven't had any migraines or headaches since April or May because of Zoloft. I recently tried to taper off of the Zoloft. I was down to a half a pill for 2 days. The second day I was really stressed out cleaning my house all day for a showing the next day. At the end of my stressful day, I was watching a movie and got the visual symptoms. I didn't think much of it because it has been so long since I had a migraine. After the visual disturbance, I had the "walking fingers", where each of the fingers of my right hand fell asleep one at a time. Sorry to say, I'm back on Zoloft full strength again and I'm feeling a lot better. I just don't want to take Zoloft for the rest of my life! Also, is it normal to get migraines on the one side of the head all the time? I read that they usually switch sides. Anyway, I always get them on the left side of my head and have the aura on the right side of my body.

Cydney <cjrenshaw06@yahoo.com>
Monday, January 5, 2009 at 08:36:51

Hi. My name is Laurie. I am 31 years old. I am a wife and mother of two boys (currently 4&5). I started having migraines when I was 16 yrs old. At first, they were only a couple times a year, and never more than an hour or two. I could usually sleep it off if I layed down before it got too bad. After having my second son, they became much worse and more frequent. I currently take Maxalt, but it just isn't working as well as it used to. A year ago, my migraines would last two to three hours, I would throw up after the first hour and then the worst of the pain would be gone and subside by the third hour. Two weeks ago (12-15-08) I had the worst migraine ever. It came on fast and hard. Maxalt didn't ease it. I wanted to cry, but that only made it worse, laying down didn't help. Then, my arms and legs went numb and I had that sensation, like when you have a nightmare that you can't scream when something bad is happening. Then I blacked out. I was out for three hours, after two hours of pain. My husband was worried and kept checking on me to see if I was still breathing. He said I looked like nothing he's seen before with illness. The fact that he was so worried, has me worried. I have never had one hurt so bad, with the numbness following, or slept for so long after. Today, I had another migraine, not as painful, but still, with a feeling of paralysis and slurred speech. I've never had migraines so close together either. The most frequent prior to this, was maybe once a month or every other month. This is the third migraine this month and it worries me. I don't have insurance, but I know I should get looked at. I am worried something more is going on. I had a cousin, that suffered from migraines for years, then two years ago, started having such bad ones, that they did an MRI and found a tumor the size of an tennis ball. So, needless to say, I am a little freaked out. If anyone out there can tell me anything, please send me a message. Maybe I just need a different migraine medication? Thank you in advance for any words of wisdom anyone can provide.

Laurie Bell <cnlbell@gci.net>
Wednesday, December 31, 2008 at 21:59:24

Hello all,

I have suffered from migraines my whole life, since I was 6 years old and it felt as though nothing ever worked. It seems as though nobody really listens to you when you speak of your pain and the advice you get is often lukewarm and useless, so you give up.

Migraines became a research interest for me, as I am in healthcare and I managed to find so many remedies that can help, ranging from medicines, to natural to lifestyle changes. Through my profession I come across so many people whose migraines are not under control and have managed to help quite a few with relatively simple solutions, compared to what they had been through already. There is no single miracle remedy- we are all different, and as such need different cures to suit our needs, lifestyles and personal trigger factors.

Please check out my website, www.managingmigraines.com where I have entered a lot of the information that I have come across. I have also written a book, Managing Migraines, which elaborates on all of this in an objective and unbiased way, so as to help you find something to deal with your pain.

My migraines are under control now- from getting 9 to 12 a month, I now am migraine-free or get at most 2 a month.

I hope that the information I can give through the website and book can help you find something to heal you and improve your quality of life.

Take care,
Claire Houlding

Claire Houlding <claire@houlding.net>
Tuesday, December 23, 2008 at 10:57:40

Hello, My name is Tammy and i'm 27 years old. Ive been suffering from migraines for the past 13 years. Just in the past 3 years they have truely began hindering my life. I have already been released from one job due to missing time from work and am currently in jeopardy of losing another job. My main issue at this time is that because i have lost my job i no longer have insurance. I have been at my current job for almost 5 months, medical insurance isn't available until 6 months. I currently have an outstanding medical bill and when i call my dr. to make an appt they can never get me in, they only send in a rx to the pharmacy. I went to pick it up today. A packet of imitrex and a rx of amitryptaline, the bill was almost $800. Of course I had to leave the script there. I cannot afford to pay for my medications. I have went to see about getting on family health plus however because i currently make more than the standard i was denied for health benefits. I have spoke with human resources about this problem, they said that if i can get a note from my Dr. that they may be able to fight for me if it gets to the point of employment termination. I am dangerously close at this point. I have notified my dr. of the situation, and asked if he would write something up regarding my migraines. I was told that i need to schedule an office visit, and he could then refer me to another neurologist. however i have tried and can never get in. Without insurance it seems noone is willing to help. At one point i was sufferering for 4 days, this migraine wouldn't go away and I couldn't get in to see a dr. I went to the ER, the dr there accused me of trying to get a fix. My mother, who took me over because i couldn't drive, was furious. She had asked the attending at the ER for a note so I can turn it into work. He did write a note for that one day but stated that he couldnt' write one for the few days prior that i already missed because migraines don't last more than 1 day and he wouldn't enable me to skip work. Anyways, I didn't know if there were any suggestions or help that you could think of. I have checked the different avenues and it doesn't seem like there is any help out there. I fall between the cracks simply because i am physically able to work, i'm single and have no children. I found this site while looking for an online support group. I'm hoping to find other people who may have been in my situation. At this point I don't know what else to do. My job is in jeopardy, i can't afford my medication or dr. visits however i can't get any assistance because i supposedly make too much. There are times when i feel like i need to just give up my job and see if i can then get some assistance with medical but i'm just not like that. I'm a very strong willed woman and i have a hard time letting other people help me, i always want to do everything on my own and i fight hard to keep it that way. Any suggestions would be great. I apologize for this long drawn out message but it's a long story, more than that is written, and i'm just not sure what my next step should be.

Tammy <tlw2332@hotmail.com>
Friday, December 5, 2008 at 19:49:42

Hey, I'm Tate, I'm 16(almost 17!) and I have been suffering from migraines for about a year and a half. It's terrible.
I took Topomax for a short while at the beginning but it gave me heart palpitations. I then switched neurologists and was put on Elavil. Elavil was working alright, but I had noticed a change in my mood and I didn't want to be medicated anymore. (I have a dislike of anti-depressants when prescribed for things other than depression.) I foolishly stopped taking Elavil cold turkey and had a mental breakdown of sorts. I then weaned off of it.
Now, after taking it for about 4 months, I am having more frequent and severe headaches. A few weeks ago I had a 4 day migraine. I also have abdominal migraines. I often miss school because of my migraines, I have missed probably 30 days in the last 3 months. My parents often yell at me in the morning when I tell them I have a migraine or a stomach ache, or that I just feel terrible in general. This is unhelpful and annoying. My mother tells me, "Tomorrow you are GOING TO SCHOOL!" She implies that I'm missing school on purpose and I'm not. They don't understand that I can't "rally" in the morning. I dread having to tell them that I am sick.
Currently, I am also suffering from insomnia, most likely brought about because of my migraines. I spend hours reading about migraines. Recently, hole in heart disease was linked to migraines, and my parents and I have been wondering whether I may have it because I have unexplained heart problems like palpitations and chest pain. However, I have been thinking I may have seritonin defieceny disorder. I have a lot of the symptoms, migraines, insomnia, anxiety (very severe), and mild symptoms of OCD. I'm trying not to diagnose myself, but it's very hard. I desperately want a reason for my headaches, even if it's unfixable, I just want to know why.
I feel like I will never be cured of this illness and feel rather hopeless. I've looked into support groups but there are none close to me here in NJ.
I currently am looking for a new neurologist because my previous one moved practices to Ohio. My parents are rather forgetful and/or cannot find a doctor that takes our insurance.
Anyway, good luck to everyone else here. I hope we all get better someday.

Tate <tatekuhn@yahoo.com>
Thursday, November 13, 2008 at 03:10:12

Hi I am 26 years old and have had migraines since early high school, about 16 yrs old. In the past 4 years I have been struggling with controlling ones that I get every single day, they never seem to completely go away. I have tried several medications (Topomax,Inderal,etc.) and some have worked for maybe 6 months to a year and then suddenly stop working and then I end up taking so many pain meds (Fioricet) that I get rebound migraines. I finally got a doctor to refer me to see a neurologist, which I am hoping I can get some answers. I feel for a lot of the people on here, it is so hard to function in daily life when you are having a migraine and if you have them daily it is a painful struggle to hold down a job, especially when most people don't understand the pain. I am an engineer and have recently had trouble with my job because of being on a computer for 8 hours straight everyday, it throws my migraines into some of the most severe I have ever experienced. I am just glad there are sites out like this so I know I am not alone and that I need to continue to work with my doctors and look to others suggestions to try to get them under control.

Stacy <svanbus@gmail.com>
Thursday, October 30, 2008 at 09:35:48

Well, I really don't know where to start. I have been diagnosed with hemiplegic migraines since I was 20. Unlike some of you I am lucky enough not to have the extreme nausea and vomitting, no aura, or sensitivity to light or sound. Instead I suffer from stroke like symptoms: drawing of the face to one side, tingling and numbness of one side of the body, slurred speech, inability to focus and concentrate and when this passes that's when the horrible headache comes crashing down. It started out just happening 2-3 times per year but in the past year and a half things have gotten so bad that I've been put on Topamax to try to control them. I've had car wreck within the past 3 weeks and since then I'm missing 2-3 days of work a week and I've now been put on beta blockers and they won't increase the Topamax because of the memory loss I'm having as a side effect of it. So I know I'm just a step away from losing my job and unless you've been there you don't understand and trust me, my husband doesn't understand how a person can feel so bad all of the time. HELP!!!!!

Bridget <bridgetdavis107@hotmail.com>
Tuesday, October 21, 2008 at 10:22:29

I was wondering what you can do after you take your 2 abortive medications and you get no relief? What is your next step? Can someone please answer this for me. I have had migraines for about 6 years and they are hereditary. Classic Migraines with Aura. I also have Chronic Daily Headaches. My husband and I have been arguing about what I can do. I usually give in and do and get a shot at the hospital. Which is usually Demerol and Visteral. They work great except it takes me a full day to recover. Please help, any input is welcome.


Melissa Engles <melissa.engles@chsinc.com>
Thursday, October 9, 2008 at 13:47:51

Merry Christmas all. I hope everyone has a good year, and less headaches. Today, I'm feeling pretty good. I had a headache from Saturday to Monday. Three days, not too bad a short one this time. Anyway, hope everyone just does well. Peace

tracey <tranurse@yahoo.com>
Thursday, December 25, 2008 at 20:53:44

I have been suffering from headaches since 2001 following a car accident. They were completely debilitating for about two years but they remain chronic and usually have a daily headache . most of the time they arent too severe enough to restrict me from doing anything. However, I usually have to take some kind of medication daily, even if just an NSAID. LIkely have MOH syndrome so i stopped triptans, its been about ten days now. I dont feel any better not any worse so I am trying to stay away from them as long as possible. I might start migranal and do the burst protocol. I really dont want to go inpatient for DHE infusions and I am not even sure if I could get admitted and have insurance pay. Anyway, nice to find this site. Sorry that there are so many people suffering but also nice to know that I am not alone.

david <dagsel_19116@yahoo.com>
Friday, December 12, 2008 at 23:02:38

hey you name it i have tried it my latest experement has been oxygen theripy no luck have also done botox just left me with a heavy forehead have done all the preventatives no luck and all the triptans my neurologist told me my best alternative is to abort the headaches with staydol demerol or nubain and need to mix them up to keep from becoming tolorent to them i also use phenergan for upset stomache years ago i used reglan with asprin it worked ok. have you noticed that most neurologist are like talking to a door.

scotty <harrissrj@yahoo.com>
Wednesday, October 1, 2008 at 03:04:33

I have been having Headaches every day of my life, for the past 21 yrs, since i can remember. I have seen various doctors since i was little that put me on different medications that had no effect. Last yr my headaches got so bad that i couldn't even fuction in college. I went to see my doctor and she put me on imatrex that as soon as i took it during a coming on migrane i was laid out. My headache was amplifid and i had to be carried in the house. My doctor then put me on sezure medications, sleep meds, antidepressants, all at the same time. I was having nose bleeds almost every day with the headaches.

I finally said enough is enough so i went to a neurologist. The last medication he put me on was nortriptyline and to take it daily at night. I did this and it seemed to work for a while but then kind of didn't have any more of an effect after a few months of taking the medication. I ended up still having to take the medicane at night and advil three or four times a week. Even on the days when my headaches aren't as bad, to where i have to take advil, i still have headaches. Im not doubting my doctor im just not sure if he specializes in headaches. I live on the eastern shore of maryland so its hard to find good doctors around here.

No over the counter medicane seems to really help my headaches and my headaches will be amplified during my period. Stress doesn't trigger my headaches it only makes them worse and when the stress is gone my headache pain decreases but is still there. The headaches are only on the left side of my head and sometimes i have aura vision (see spots) or things will go dark and then come back to light. When i was younger I used to have numbness only on the left side of my body. My mother had headaches and my sister has minor ones. My mother also has tyroid problems and so did my grandmother but im not sure if that has anything to do with it. I've had MRI, Cat scans done in the past as well finding nothing.

Megan <thegatheringstorm88@yahoo.com>
Monday, January 26, 2009 at 05:01:27

Hi I'm Celeste and I just found this website today.
I am 21 years old and have been experiencing migraines every day since I was 13. Every year they progressively get worse. I have been on every single migraine medication that I can be on including anti-epileptics, anti-depressants, beta-blockers, etc. My physician said that we've officially tried everything, and I'm on my third neurologist. I've even tried massage therapy and naturopathy. At some point in high school I was put on Tylenol #3, then Tylenol #4, then Percocet. About two years ago I had to do a percocet detox. After about a month of being on no painkillers I started taking Tylenol #1. It worked at first, then I had to increase dosage, and now I am immune to codeine. A few months ago I started buying Oxycontin for the pain and it worked like nothing else. Unfortunately I developed a bad addiction and I am now detoxing again. Let me tell you, Oxy detox is nothing like Percocet detox. I've been off them for about a week and the symptoms are terrible. Shaking, sweating, restless legs and arms, fatigue, depression, diarrhea, and the migraines on top of that. I had to quit my job (my third job lost to migraines) and I have to go on disability.
I am just feeling like this is the end of my story, and I am never going to get better.

Celeste <maliceinthunderland@hotmail.com>
Monday, September 22, 2008 at 01:20:34

hi all. i'm back. i have a migraine today, started around one or two this afternoon. i know, what am i doing on the computer? my kids got home from school, the dog jumped on the bed and they wanted supper. i slept from about 2:30 to about 5. hope everyone is fine.

tracey <tranurse@yahoo.com>
Monday, September 15, 2008 at 18:41:25

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