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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Please note: Posts are not automatically added to this journal. If you desire a prompt posting/response time, please use this site's discussion forum. Also, please try to use the discussion forum for question/response types of entries. The journal is intended to be a place to accumulate experiences and information, which can be used as a reference to those who wish to learn more about what it is like to be a migraine sufferer. Thanks!

Hello everyone,
I did not know there were so many suffering from migraines. This is my first time on a chat room. I am 49 and have been suffering since I was in my teens. I only had them every once in a while. The last couple of years I have had them more often, sometimes lasting for a couple of days at a time. I have been to the ER where now they know me when I walk in, that's sad. Beginning of last year I had so many that I missed alot of work. In August they never went away. I have them 24/7. I was on topamax for prevention of the migraines and also I have seizures. The topamax was helping for awhile but in August it seemed like it just quit working. I started going to a Nuerologist and they did a MRI and found an anrysm, but it was too small they said to cause the migraines. They tried different medications and none worked. Alot I had already tried through the years. They finally did Botox - which I had to pay myself because the insurance wouldn't cover it. That didn't work. They then tried an occipital nerve block - also had to pay myself. Didn't work. The nerologist said that I have a chemical imbalance and that I would need to see a Pain Management Doctor because all they can do now is give me drugs. I started seeing the Pain Management and he asked if anyone had done an xray of my neck, I told him no. They did one and found that my spinal cord was being pinched, so they did surgery. They were hoping that would help - no such luck. I am to the point where I don't know what else to do. I lost my job of 19 years last August when I couldn't work any longer. I am still unable to work. My husband & I are about to loose our home because I am unable to work. People told me to apply for disablity so I did a couple of months ago. No telling how long that will take or even if they will except it. I have never heard anyone being on disablity due to migraines.I didn't want to cause I thought I would get better and be able to work again. Has anyone had the same symptoms of having them all the time or the doctor saying they have a chemical imbalance? I would like to hear from anyone that has or has any other ideas, I am all ears. From the blondie that is about bald from pulling out my hair not knowing what else to do. Thanks

Colynn <leftie@hughes.net>
Sunday, June 14, 2009 at 19:59:37

Hello to all!! Im 23 years old, And I have been having a contionus mirgaine since december 2008. Around that time frame I was at work and noticed that i was Having a bad headache, but i didnt think anything of it, because i have a very stressful job. Than i started to noticed that i was having the headache everyday. I started taking tyenol and asprin but no releif. Than i was having sharp pains in my ears so went to the Emergency Room. They gave me antibiotics. I started taking them and had no relief. Than i went to a specialist who advised that i didnt have an ear infection. to make a long story short i went to a neurologist,after trying 20 different medicines, nothing worked. He referred me to a headache specialist, Dr ford( aka Mr. Rudeness of ford headache clinic in bham al.) Needless to say he still couldnt help me! Than on top of that i told him that I couldnt work because of the painful 7 month headache and he told me " well i have mirgaines and i work everyday so does all my other employees who suffer!"

Nikki <Nikki39101@aol.com>
Saturday, June 6, 2009 at 21:11:11

I'm shocked that I haven't discovered this site until now! Thank you, thank you, thank you! I'm sure to be a frequent visitor. I've read some of the discussion threads and, although saddened by the pain of my fellow migraineurs, it is a relief to me to find somewhere I can share with others who understand what I'm going through. I'm a Wife, Mom & Grammy, with a lot to live for, but a diminished quality of life at the present time. My migraine disease began rearing it's ugly head when I was 14, but I was misdiagnosed back then with "tension headaches". Later, at age 22, my attacks became much more frequent and longer-lasting, and I was finally correctly diagnosed. Over many years, I've had some "better" times, with fewer attacks, but currently I'm having one of those "worse" times. I'm 49 years old and with intractable/refractory migraine. I'm being treated by Dr Urban from Diamond Headache Clinic in Chicago...challenging, since I live in Upstate NY. I'm hoping that he'll eventually be able to help, but feeling a bit discouraged right now. I just wanted to "introduce" myself. I'm exhausted from fighting this pain all day. But I'll be back soon. Jane

MrsJane <woolley.jane@gmail.com>
Tuesday, June 2, 2009 at 22:18:17

Hi Amanda
I am so sorry to hear about such a difficult time you are
having, especially with a toddler! Whenever you have
weakness, or any kind of stroke symptoms, you must go
to the ER and not leave without an MRI or CAT scan. I
do have the types of migraines you describe, their my
weird or really bad migraines. The odds of stroke goes
up alittle with people who have chronic migraines. Since
you already have had ischemic attacks, or mini strokes,
coupled with your blood pressure, you just can't ignore
them, so please don't. I had a terrible year and a half
a couple of years ago when it was found that I had
neurological involved Lymes. It was hard to find treatment
since I never tested positive(not uncommon back then). also
something that I know from others (not myself) that
uncontrolled high blood pressure causes severe headaches.
If you already suffer from migraines it can make it
worse. Some thoughts. Please contact me anytime. I will
keep you in my prayers that you get the answers you seek!


donna <donna.gonzalez77@yahoo.com>
Tuesday, June 2, 2009 at 21:19:37

Wow, I had no idea there was a place I could go online and talk to other migraine sufferers. I am 20 yrs old and have suffered from migraines since I was little. In the past year and a half they have gotten very severe. They are constant, never stop, I suffer from severe pain in my right eye, extremely high blood pressure, dizziness, fatigue, and mini-strokes. I can't function most days of the week and I have a 15 month old daughter to take care of. I've been to doctors, neurologists, and the ER, so many times and no one can tell me anything other than "o, its just a migraine". They send me home with pain pills that I don't want and nothing gets done. I get severe twitching from these headache, migraines or whatever it is. As of the last month they have gotten much worse. The right side of my body is always weaker, my right arm and leg is always cramping, and somedays I wake up I can't get out of bed because I feel like I fell down a flight of stairs. I have these times where I just freeze and I can't move or talk. That's one of the scariest feelings ever. My blood pressure goes crazy(189/117) is the highest its been and my doctor never questioned it. I've been on so many medications for various things and I just want the doctors to not give up any more. I want them to look into other things that could cause them. Any migraine sufferer can agree that its "not just a headache". You cannot function like this. My life and been turned upside down in the past year and a half and I can't even remember most of it. If anyone can relate to anything close to this and have been able to figure anything out PLEASE let me know!

Amanda <anmeek2007@yahoo.com>
Thursday, May 28, 2009 at 17:47:59

Hi There,

I am going to be joining all you sufferers out there, i have had migraines now for 11 years, i suffer from the whole hog, blurd vision, loss of feelings to my tounge and hands, i cant hardly talk, head pounds, i get sink and have the runs, this usually last a day for me. I tend to find it the hardest when working and have to leave due to the illness which makes me feel bad and i think i am going to get the sack. i have recently been given stress tables which i think have brought on my migranes so i have stoped them to take a zomig which helps with the migranes when at worst.

I have noticed a few things which i have stopped having which bring on a migraine, cheese, blackcurent, milk, coffee, chocolate, but the main thing hat i find to stop is the stress.

i would to talk to other migraine sufferers.

Kelly <kmarkham_99@yahoo.co.uk>
Thursday, May 21, 2009 at 10:24:22

just wanted to bring some hope to all of you in pain..since 1998 i've SUFFERED extreme headaches..was diag. with migraine..you name it i've tried it over the years..so about 8/9 mts ago i started getting severe pain in my right ear,right hand side of my neck, right shoulder & right arm..& since Jan I've been in the A&E 7 times with the severity of the pain..on one visit to the A&E a doctor suggested that i may suffer from TMJ & told to get it checked out with my dentist..so after just one visit the dentist was able to tell me that my lower jaw was out of place..I had braces for 3 yrs in my teens & i never wore the retainer afterwards & as a result my jaw slipped out of place..for 4 weeks now I've been wearing a 'splint' at night & I am new person..no more pain..I can not begin to tell you how wonderful i feel..its like i got a new head :)... I know every case is different but i just wanted to share this with you all as it may help someone & relieve them of their pain..for one moment i never thought that could have been a problem but through unreal pain i finally saw the light at the end of the tunnel..take care x

lisa <dooballa77@hotmail.com>
Wednesday, May 13, 2009 at 15:07:59

Hello All!!!!
I'm new to this forum. I'm actually new to the whole support group thing. I was very sorry to hear about all those poor souls who are in so much pain. To all of you I wish you the best on your journey to finding the help you need.
I work in a hospital in the sleep lab. I too avoid the ER like the plague. It can be good and bad when the doctors know who you are and you come in frequently for pain shots or IV medication. They really don't like it much when you tell them what works for you and it's a medication they don't like to give as a first line treatment. They always want to start with baby steps and in the meantime you are the one who suffers. Doctors, I swear......
Here is my story...I am 40yrs old, I was diagnosed with migraines when I was 29. I had been getting them for years but always thought they were related to my allergies and sinuses. Then the day came that I had a CAT scan and I was in the middle of a headache, surprise my sinuses were clear, imagine my shock. It never occured to me that I ould have migraines. I was living in AZ at the time and also worked in the sleep lab. I suppose that gives me a sort of head start as we in the lab deal with pulmonoligists, PhD's, Family Pratice and neurologists. I had the pick of the litter. He diagnosed me with allergy induced migraines and gave me Relpax samples with vicodin for break thru pain. This didn't work. I then switched to Torodol pills these worked for a while. I got married, got pregnant, moved to WA and continued to get migraines. anyway long story short I had two children back to back and was unable to take anything to strong. Now my boys are 2 and 3 and I'm trying to get a handle on the pain. I get them about 2 times a week and they can last up to 3 days. I am currently taking Relpax for rescue, topomax for maintence, tramadol for break thru pain, this really doesn't seem to be working. I've tried all the other mellow pain killers and they no longer work. I'm afraid to ask for something stronger, I don't wan the Dr. to start thinking that I'm a druggie. They really don't like to give narcs here. I have gone off the birth control pills in an effort to find out if it is a trigger. I have a food trigger. I know that I have a weather, fragrance, chemical and general strong odor issues. If anyone has any suggestions about what to do for th tramadol please let me know. dolphingirl@hotmail.com

Dolphingirl <dolphingirl>
Monday, April 27, 2009 at 00:06:18

I have read some current posts discussing the disease Tardive Dyskinesia. Recently a family member of mine has been diagnosed and we have found it to be a result from taking the Reglan.

The Chronic use of Reglan (Metoclopramide) has been linked to permanent neurological damage. The symptoms are rarely reversible and there is no known cure, although in some cases, symptoms may lessen or resolve after treatment has stopped.

I have been searching the web to obtain information and have found a new forum site that has provided more information. See www.tardivedyskinesiasupport.org

Rashell <creativesymmetry@yahoo.com>
Tuesday, April 21, 2009 at 14:53:38

Has anyone else out there determined weather to be the trigger of their migraines? I have kept a journal for over 5 years now trying to determine what might be the trigger. Only until I moved to Montana did I discover weather patterns is the only constant. Whenever there is a high pressure system that builds over head I get a migraine. I have tried so many medications (like most of ) in the 12 years I have suffered and have found no relief.

Anyone else have this in common?

JB <barnosky@gmail.com>
Tuesday, April 7, 2009 at 19:53:33

hello i am a 21 year old single mom to a 10 month old. and let me tell you raising my daughter with daily migraines is one of the hardest things i have to do. i feel so guilty because i feel like i am not a good parent because i cant be my old self like i used to be. my neurologist cannot figure out why i am getting my migraines like i am, and they cant find anything to help ease the pain.

The only thing they have found to work is taking 4mg tablets of diladed. they take the pain away and make it to where i am able to function normally and take care of my daughter. but of course they wont give me anymore besides the few they gave me the first time, becaus he doesnt believe in pain medicine. and no one will listen to me when i tell them that i am not becoming addicted to them and that they really do help. it is very frustrating.

does anyone else have any suggestions on what i can do? i am at my breaking point in life. i go to bed with migraines, and i wake up with them. its a constant cycle. they are making me very depressed. and to where i always have to have someone watch my daughter for me usually because they are dabilitating. ugh!

katie <westrekatie@yahoo.com>
Monday, March 30, 2009 at 13:59:22

3 things not to do while you have a migraine and are on drugs:

1. Talk to your boss.
2. Go to a parent-teacher conference.
3. Go shopping at Costco.

I know this from my experience today.

I'm sure you can all add to this list...

Nene <mjzski@aol.com>
Wednesday, February 25, 2009 at 00:17:59

Hello, fellow migraine sufferer.

I am 62 years old with no income. Not working a high-stress job is the most important migraine relief I know.

I have suffered from migraines for at least the 37 years since attempting suicide at age 25, and probably longer. Until about 10 years ago, I thought that the periorbital pain around my right eye was sinus and treated it accordingly. But one day I was having a migraine and went to an ENT, who examined me and told me I had no congestion in my sinuses whatsoever. Likewise, an eye surgery clinic told me that the problem was not in my eyes.

During my first visit to a neuro, I was having a migraine, and I was not taking it very well. I was in pain; he thought I was insane. He prescribed lithium (for bipolar?) and no pain meds, so I continued to suffer for several months under the care of this vaunted super-doc. Eventually I told him he was incompetent and didn't know what he was doing. I don't know what he did with that, and I don't care.

Another neuro diagnosed cluster headaches and prescribed Inderal� (propranolol hydrochloride) to lower my blood pressure, which I had never considered high. He also prescribed Midrin and Maxalt� for emergency pain relief. I take Zoloft�, and therefore I can't take triptans, such as Imitrex�. (Yes, I know that Maxalt� is a triptan, but it isn't contraindicated with Zoloft�.) Taking a Benadryl or Tylenol-PM before sleeping for eight hours works wonders.

Freshly baked pizza (riboflavin) with tomato sauce (lycopene) help keep the migster (migraine monster) away.
Avoiding eyestrain from excessive computer viewing helps.
Avoiding driving into the sun and exposure to bright sunlight helps.
Avoiding caffeine, chocolate, and overdoses of sugar helps.
Avoiding stress or emotional upset helps (bye-bye big money job).
Getting 7� to 8 hours of sleep on a regular schedule helps.

But I still have other severe headaches that cause me to lose jobs:
sinus headaches on my forehead;
"burning scalp" headaches on the top and front of my head;
temple headaches above my ears;
tension headaches in the back, down into my neck;
and an inoperable bone spur inside one neck vertebra, which pinches on a nerve which goes down my neck and across my left shoulder.
I take naproxen for the latter, but I rarely take NSAIDs for the others because of rebound.

I can't find work, but if I should be able to get another job, I need some way to cope with the chronic headaches without excessive sick time and without biting someone's head off.

John <junkm452@yahoo.com>
Thursday, February 19, 2009 at 00:37:09

I was just curious...has anyone tried any of the anti-convulsants to prevent their migraines. I started getting migraines around age 18, made the round of doctors, pain specialists, nothing really worked. I was given Depakote for something different when I was about 30 - a good size dose - and for several years. It actually worked, I no longer got migraines, still go headaches, but they were not migraines. I now take something called Topomax. I still get mild to sometimes migraine headaches, but I can live with that. Topomax is a tradeoff, stomach problems, serious memory problems...I even had one doctor tell me that that doctor who prescribed it to me at that dose was crazy and better have good malpractice insurance...he thought a few natural oils ought to cure my migraines...

C. Zeller <czeller83312@yahoo.com>
Tuesday, January 27, 2009 at 12:30:33

Out of a sense of wanting to feel in control of something, I started a headache blog.
My feeling is that I will be more disciplined and focused in my efforts to get better if I am held accountable by my blog (and hopefully some readers of it!)
Anyway, here's my blog URL: http://headusersguide.blogspot.com/
The first entries are mostly just background, but my goal is to keep it updated with what I am trying and how well it is working.
BTW -- I actually have one friend who has migraines, so I know I'm not alone -- but it was good to stumble across this forum and find others who understand the nightmare of migraine.

Sarah Christine <smoore0704@yahoo.com>
Sunday, January 11, 2009 at 16:46:49

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