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Hi everyone! I haven't written in quite awhile, things have been going well-- less headaches, and less intensity- up until november 24th.
With the snow storms returning, it seems to have kicked my migraines into high gear. I'm still working with my neurologist. I'm struggling with my meds-- which dont seem to be working. I'm on 37.5mg of Effexor ER a day, maxalt mlt, midrin, ultram, and zofran. I still practice yoga, deep breathing, and stretching everyday. I have had a #8-9 migraine weds night, thurs night, sat night, sun night, and all day monday (which this one landed me in the er-and had to leave work early).
My midrin only seems to work if i take 2 with a maxalt and a phrenegan 25mg suppository at the beginning of a headache, then 1 more an hour later. Even then it doesnt get rid of the headache, just brings it down to a 3-4.
My ultram does not work-at all. Has anyone used this medicine before? any comments?
The zofran is supposed to be the "Caddilac" of anti-nausea meds, but my phrenegan seems to work the best still. Anyone have any comments on zofran?
So monday my migraine started at 10am. At first i thought it was going to be a sinus headache, so i took advil cold and sinus.
10:30 i got my aura, sparkling lights as if i was going to pass out so i took my maxalt mlt. 11:30, no better -- full blown migraine. 25 mg suppository of phrenegan, and 2 ultram. 12:00- nausea better, but pain is still around a 8. My right eye was drooping (which is the norm for the really crappy headaches), and my eyes felt like they were going to explode -- but i kept working.
I have really unsympathetic co-worker who can make my life hell on migraine days. starting at about 1:30 i started throwing up -- repetedly. Anything and everything i put in my stomach came right back out. I worked for 2 hrs like this! Now i work the patient checkin/out desk at my Health Center so i had to keep leaving patients to run to the bathroom.
Finally 4:00 i had hit my breaking point- i didnt leave my co-worker an option, i was leaving bottom line. I went straight to the ER and after I threw up a couple of times on various chairs and one nurse they put me right back to a room. They gave me my usual cocktail, which initally brought my pain down to a 6-7. They also had sinus xrays taken just to make sure it wasnt orginating from a hidden sinus infection -- which it wasnt and i knew that, but i conceded -- and i was right. my xrays were perfect :).
They had to give me pain meds 4 times before i left, and I still left with a headache--it was down to a 3-4, but still there. Since I'm having such issues with my meds working, the nice ER doc sent me home with EXTRA STRENGTH vicodin, which helped me throughout the night after I got home.
Now, i have to discuss my pain meds with my doctor. The midrin and ultram simply arent working. and with the frequency and intensity of my headaches worsening I need more then just maxalt and a daily maintence med. Im really frustrated. I've tried 10 different meds since May, and I'm not seeming to get much luck. I also think with the stormy weather my headaches are worse and need stronger meds.
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'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