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Like I said earlier, I'm doing yoga, deep streching, and lots of deep breathing relaxation techniques....but i need addittional help. I feel bad calling my neuro's office AGAIN and saying i need new meds please! but then again, if these arent working, then i need to let her know. Know what i mean?
I'm looking for some comments please. anything.
As I read what you wrote I thought you were in my head writing for me.. If my spelling is off it's because I have a migraine- I agree I can take all the Midrin I can for the day-Ultram and I can take the daily limit of that too but it doesn't even take the edge off any more.The Phenergan works but I have to have the time to lay down and working as you do I can't.Where we differ is my supervisor and co manager when I work both suffer from Migraines not as bad as mine(both females) but they do understand even tho other employess don't.
Because of having stents in my heart there are many anti abortives I can't take-some I've tryed and have had some bad reactions when I started..I've had MRI's Ultra sounds and you name it-and all I ask is that someone runs over my head please.On a scale of 1 to10 I have daily 9 to 13 but I'm single and have to work to keep a roof over my aching head.
It's 5:30AM and I've been up for about an hour with this one.And I have to be into work at 11AM. Another problem I have not being in snow country any more is when the space shuttle goes up or comes down here in Florida I suffer badly.
I hope they find something to help you. I just wanted you to know you aren't alone.
Jody/Midnite
I remember trying to work with a migraine. How miserable can life be? (Thank God I am retired now) I used percocet (which I am cutting out because of re-bounds) and that made me look stupid. Couldn't remember what people asked me to do. I was an Admin and had several requests each and every hour to do things for others. They knew I had headaches and put up with me and repeated but I could see that was driving them crazy. I feel so bad for you because I know what you are going through. My heart goes out to you as I think of what you are going through. Wish I could help. God Bless.
Denise
thank you. 
It's nice to hear someone else who can honestly understand what I'm talking about.
I'm glad you have understand coworkers. I wouldn't want anyone to be in my position. Having a migraine, continuing to work is hard enough without people harping on you for a condition you really can't control fully.
When I take my phrenegan, if the nausea is bad enough, it doesn't make me tired -- so thankfully, i can take it at work usually.
Ive had so many different mri's and cat scans done on me I've lost count. All normal. Pure migraine in action everytime.
Do your migraines usually start in the morning? Mine seem to wake me around 4-4:30am. You said in your comment it was 5:30 and you had been up for an hour with that migraine-- just wondering if yours always started early too. Mine don't ALWAYS start in the morning....usually tho, thats when they do. Weather is a huge trigger also. The snowstorms are wreaking havoc on me. Did you have a problem with snowstorms? you say now you live in florida, how does the heat treat your migraines?
can't wait to hear back. email me if youd like bereasonabledoitmyway@yahoo.com
chelsea
Percocet is strong, it works really well on my migraines, but I can't fully function on it. I have similiar problems that you listed with percocet.
I have to work, I don't have an option-- and your completely right. It just makes the migraine worse to have your coworkers get frustrated and angry with you over something you really dont have complete control over. My boss himself is great. He's a chiropractor and he's seen my migraines in action. But my coworker is another story unfortunately. And no matter which way, or how many ways I try to explain this condition to her, doesn't click with her. It's ok. I can handle it :) ... I've thought of a couple different ways to handle the situation differently next time, so we'll see.
thanks for the good words and blessings.
chels
I wonder if the three of you couldn't sit down when you have time and talk about it. Get it all out in the open. If anyone had trouble with me or my headaches I would sit down and we had a conversation. Not yelling......I always waited for the right time and we had a nice talk. One example was I was getting trained to run the phone system. Huge. My trainer knew it inside and out and all the numbers to everyone. When she would show me, she went very......very fast. Some people don't like others being able to do their job and if I wasn't catching on quick then she looked all the better. Get it? So many play that game. So I asked her to come outside with me and we sat down. I explained that I could see that she was very good at doing this and I hoped some day I could do the same. I told her that in school some instructors are good and then some real smart ones are not so good. They know the subject so well they can't understand why you don't get it. I went on to say I thought that was the problem here. (She was putting a lot of pressure on me "I have to get you trained! - I want to move on to my new job." ) I told her that I thought she knew the system so well and was having trouble explaining it to me and I asked her to slow down! I can't go that fast in the learning process. If she wanted to get on with her new job then she really needs to slow down and I will get it. I made her feel good about how well she could do the job. And at the same time I made her understand that I couldn't learn that way. It was hell until we had that talk. I would leave, go to the Doc's office and get a shot and then come back with half a brain and try to follow her again. Not until I talked to her (real nice-making her feel good) did she understand what she had to do. You have the support of your boss and that is huge 
Maybe you can explain to him and then the three of you sit down. Something has got to take the pressure off of you. Ohhhh how I have been there. Let me know how it goes. God Bless.
i am affected by the change of seasons too. although i am sure you have probably triied every thing, i found big results in changing my diet. also the only thing that seems to work for me when the weather is changing, are steriods- either IV or oral. they stop my migraines in their tracks. i feel your frustration with co-workers, i have experienced a number of unsympathetic people in the work place. i have finnally reached a point where taking care of myself is the priority. i don't care what my co-workers think, because i can't change it. good-luck, and know your headaches will get better!
well, i have had two different types of steriod treatment, but the one that seems to work is IV decadron 20mg once a day for two days. this is what my neurologist has ordered for me several times with good effect. also, in regards to diet, i have celiac disease. many people with migraines have undiagnosed celiac. i found my headaches becoming very bad during the past three years, despite avoiding many migraine triggers. however, i discovered that it wasn't just aged cheese i needed to avoid, but all dairy. casien is a protien in dairy that can cause an immune response. after cutting ALL dairy from my diet, my headaches improved quite a bit. i would suggest you try the dietary angle. an "elimination diet" is hard work, but is rewarding when you figure out what is making your head hurt. due to the type of immune response your body has, you may find that a food ingested may not cause a headache untill several days later. i wasn't able to connect the dots until i read about this in a newspaper article. the reason no treatments work is because you are continually ingesting food which are triggering an immune response which then causes the migraine. going the dietary route isn't easy, since when you feel lousy, you want comfort food. but living without migraines daily is worth it!! i have also started a 'whole food diet', cooking from scratch, to avoid processed foods, and my headaches are even better now. hope you find this helpfull- let me know if you have any other questions- it is at times a demoralizing, isolating condition- but things can get better!!
Dear Chelsea,
Sorry to hear that you struggle with migraines. My name is Josee short for Josephine and I am 51 years old. I have struggled with this pain since I was 3 years old. In those old days all I was ever given was an adult aspirin and laid down in the dark with cold compresses. Over the years medical science has grown and now there are a lot of medications. I have tried everything. I am so sensitive to Morphine and all its derivatives. I also live with the daily pain. It never goes away. As I have aged my pain has become more intense. I am finding out since August 23, 2008 that I have a combination of hemiplegic migraines and refractory and intractable migraines. All I know is; they are horrible. I do not wish this pain on anyone. It takes over every thing. It is difficult to do anything. I am fortunately disabled due to the migraines for 6 years now. It was tough financially. Thank goodness I have 2 wonderful sons who took care of me and still are fighting the battle with me. You are ok for giving up on topamax for the third time. That medicine does so much harm. I do not understand why it is used as an abortive. Keep writing ... and I hope we will all be able to help each other. There has to be nice doctors who will take mercy on us. Most doctors at the emergency rooms do not have any knowledge of migraine disease here in Phoenix, Arizona. I usually wait until the pain has made me pass out and then I call the paramedics. Make sure you keep a list of all your medications and everything you are allergic to. Thank you for writing about the lumbar puncture and the blood pressure. That is one test that has not been done on me. I will suggest it to my nuerologist at my next appointment. One of your questions about Intractable migraines... the pain does not go away. My nuerologist treats mine with a cocktail of toradol and phenergan. Another question you had was about the medicine thorazine and for me the answer is yes. I also had tremors/twitches. Riding that medicine was tough I don't remember what was given to me to counteract the contractions.
Thank you if you read this. I hope I answered a question or two. Please feel free to write to me again with any more comments/questions.
Sincerely,
Josee
Hi Josee,
Thank you for sharing your story with us. Some people find it very helpful to write abou Migraine disease. I hope it helped you.
Hemiplegic Migraine, a rare form of Migraine disease, often starting in childhood, and the only Migraine attack accompanied by true motor weakness. You probably know already but, it can be a difficult condition to diagnose as some of its symtptoms may mimic other vascular disease and it can also look like epilepsy, stroke or other conditions. A full case history with all symptoms, and complete neurologic work is needed to rule out conditions. Click on the following link to continue reading more about this condition: Hemiplegic Migraine - The Basics.
Topamax can be a tough medication for some people, for others it is the medication that makes all the difference in their lives - less pain. It is actually a preventive medication, not an abortive. There are so many medications available it is easy to get them confused. We have some very good information on this topic you may be interested in: Preventive, Abortive, and Rescue Medications - What's the Difference?
I am so sorry for what you have to go thriugh, I too suffer from the same migraines and just got 6 injections in my head but I don't think I will ever do it again. I too take maxalt but it seems to work well for me but I just started taking it and it seems to keep making the headaches come more often. Not sure, but the injections have put me in bed for two days now. I hate the weather changes one day maybe I'll move somewhere the wather doesn't change!
Chelsea, I thought I had it bad with 10-14 headaches a month.I take Imitrex when I get headaches. I had also took Midren, no good on that one. I have gone thru a bunch till Imitrex. So I can not give you very much info. I feel for you on the pain and some people just don't get it. Mine is usually on the right side temple. I've been to the Nerve Doc, two of them. Basiclly, they cannot help me or can seem to find the problem. So I learn to live with it. Well. I hope you find some relief. Have a Merry Christmas and SMILE *___*
Jessie
Hi Chelsea,
I came across your website looking for help on my own migraines. I see we are in the same boat. I'm only 23 and have been dealing with migraines for only a year now. It seems like forever to me. I always feel like I am the only one dealing with migraines and there is no one out there who can feel the pain I feel on a daily basis. A headache is a headache but dealing with a migraine for more than a day is the worst thing possibly I can ever experience. I've been to a neurologist who is supposed to be the "best" the practice but found that the whole staff is no good and all they want to do is just give me prescription after prescription without talking to me and letting me tell them how I feel. I've tried maxalt, axert, naproxen, imitrex (pills, injections) I'm currently taking Topamax for the 2nd time (which I don't feel like it's working) but my dr. insists that I keep taking it. Last spring I went a whole month with a 24/7 migraine attack and in the of Aug-Sept they finally went away I thought to myself I was finally free. I went on doing what I try to do everyday until the end of December came and my worst enemy came along...they returned. I too thought it was sinus related as I deal with those too. But that wasn't the case. I returned back to my dr. only to find myself waiting 30 min and to finally see him for 10 min and to find myself with 2 prescriptions and and samples. I'm back on the Topamax. I'm told that I can't take over the counter medication because it will cause rebound headaches and I can't take to much of my Trexamet medication because it will only to the same those are only "emergency" pills. Well my days are always emergency days. I had a reaction to the side effects to topamax so I only take it at night time im currently on 100 mg. They put me on prednisone only to find that I had an allergic reaction to it. I've only had a CT scan done and that was only because my mother ask to have one done my dr. was never going to do one, and that was in the beginning of my 1st set of headaches of last year. I'm going to a new neurologist next week to see if he has another opinion. I feel like there is. I don't know. Im back on my 24 hr headaches and I'm on day 2 right now. Normally I have headaches everyday but not for 24 hrs. Going to bed with them and waking up with them is the worst thing ever. Going to ER hasn't been on my list...don't know what exactly they could even do for me. I hope the best for you and hope your migraines ease up on you. Take care.
Kristen
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I'm sorry to hear your head is bothering you again. Re-reading your SharePosts brought me back up to speed on you. Let's see if I can do anything to help.
Midrin, maxalt are abortive medications that stop the Migrainous process. Ultram is a rescue medication taken when abortives fail or can't be taken and Zofran helps with nasuea. You don't take them every day, right?? Certain OTC and/or prescription medications if taken two to three days a week may cause Medication Overuse Headache and then NO preventive medication on earth will work. Period.
At one point when we were talking about IIH you mentioned that your CSF pressure "wasn't" elevated (I think you said it was 190) but after some fluid was removed you felt better. See, here's the thing - 190 may be to high for you and contributing to your Migraines/headache. Other people with IIH can have a reading of 190 and be fine, it's when they get to 200+ that they have a problem. So - my point here is we just can't go by numbers alone. We have to take in account symptoms too. Intractable headache is not a diagnosis, just a difficult headache to treat. Migraine with aura, Migraine without aura, and IIH are all diagnosis. Is it time for another spinal tap to reduce your head pain? This could be why none of the preventive medications are not working. I seem to have them about twice a year to reduce the pressure. And our pressure reading are different at various times, but if you get relief, then that is pretty definative. Have you had your eyes checked lately? The IHRF is a good site for IIH information.
Sinus is alltogether another issue. In November I had the opportunity to go to the American Headache Society's Headache Conference in Scottsdale, Arizona. Teri and I attended a session on sinus and Migraine. During this presentation it was clear that most patients labeled as having sinus headache were infact acutally have a Migraine. With these "headaches" nasal congestion and sinus pressure are found in over 63% of people, along with light and sound sensitivity. The bottom line here was pretty clear, most of the time it is a Migraine, not a sinus issue just as suspected. For more infomation click HERE.
Let me know what you think, ok?
Hi Nancy!
1. I know the limits for my meds. most of them cant be taken everyday, or more than 2 days in a week. I know that maxalt and midrin are abortives. Ultram was supposed to be a rescue med but it does not work at all for me.
2. Yes I felt better after the spinal tap, but my neurologist said my level wasn't elevated enough to be IIH. Also, if your not put on a diueretic after the spinal tap, your fluid level will return right to where it was before the tap within 48 hrs or so. correct?
3. I am diagnosed with migraine with aura, intractable migraines. They come on hard, stay for a long time, and i have a hard time treating them.
Do you know any information on a MIDAS form some doctors use to determine the level of disability in migraine patients?
I am struggling with my migraines again. I had them under control for a while, but it really seems as if the snowy weather, the storm systems have kicked them back into high gear. Weather, pressure changes are triggers for me.
I can't remember what else you wrote, and it won't let me scroll back through your comment till I close this box, so I will continue this in the next message!!!
chels
Well.....Not sure what to say here. Although I do know there are medications that may work better for certain conditions like IIH, like carbonic anhydrase inhibitors, which may help with your intractable head pain. These drugs include diamox (acetazolamide) and neptazane (methazolamide) - Teri takes diamox, I take neptazane. Carbonic anhydrase is an enzyme needed in the production of cerebrospinal fluid (CSF) and many other areas in our bodies. When the fluid is inhibited, the production of CSF and intracranial pressure decline.
You could discuss trying a carbonic anhydrase inhibitor with your doctor. Some doctors also use combinations of medications with these, like other antidepressants, beta-blockers and calcium-channel blockers could be used, depending on the individual.
Always so much to think about!
My brain might explode with all the information I've taken in and thought about! Your right, there is always so much to think about!.....
I was on diamox when i was first diagnosed with IIH, along with elevil (anti-depressant). My current doctor did not put me back on diamox this time, because according to her my pressure was not high enough to be a contributing factor in that round of headaches- instead kept me on effexor xr.
now, Im just waiting for a cancellation at my doctor's office so I can meet with her again and try to straighten this out.
thanks again for all the info, and good words.
it means a lot.
chelsea