They're Back.....

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

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

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.

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

having people get frustrated and/or angry with me with a headache just makes my migraine worse!.....My boss is phenomenal but my coworker is another story.  I thought of a couple different tactics to use next time this situation presents itself.

Thanks for the good words.

They have tried steroids to break my migraine cycle, and they didnt work.  which one did you try, does it work differently IV style?  What changes have you made in your diet with the weather changes? any ideas? I would appreciate any suggestions!!

thanks for the good words

chelsea

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!!

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?