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Old 03-11-2013, 07:24 AM   #1
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so desparate... what else is there to do???

My migraines rule my entire life. I've had them since 1994, but only since January have I had daily migraines or tension headaches. My primary doc and my neuro have thrown out so many meds for me. Imitrex is not working anymore! I refuse to take Cambia b/c it's way worse than vioxx even though it does help a little (i have thrown it up a few times).

I had quite the scare about a month ago. I was so desperate that I almost died (very unintentionally). I used to be on fentanyl patches for severe back problems, but I came off and only take a percocet if needed for my back. Well, on day 16 of this migraine streak...I put on a patch with the intentions of being sedated so I could sleep a couple days and thought if I wasn't stimulated that I'd break the migraine. Well, not being sleepy enough at bedtime, I put another patch on....[stupid!!!]...I am no longer tolerant to these patches...and next thing I remember is paramedics and firemen putting me on a stretcher...my husband woke to find me barely breathing and gasping for air . I just needed relief and no one could figure anything out. Spinal tap was normal, CT scan normal, MRA normal....so bandaid of toradol/reglan/benadryl slapped on and released. Got into a neuro 3 days later and the migraine broke after an imitrex injection and a cambia. My gosh, my eyes and head was so sore. But since then, they come every couple days with tension HA's b'n.

I feel like I've tried every med except inderal. and ive never tried botox. The more time goes on, I get so angry...I wish everyone who knows me would have one migraine b/c I feel they have no clue what I go thru. I am starting to get bad thoughts....but no, its a selfish act and I would never leave my 3 kids...although I feel they are neglected right now.

And I keep reading about all these rebound headaches!!! Every med I take gives rebound headaches! I don't know where to turn....or what to do...I can't go on much longer like this....

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Old 03-11-2013, 07:39 AM   #2
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Re: so desparate...what else is there to do???

I truly feel for you, as I have migraines, so does my daughter, and they are awful. I have a few suggestions to consider. Has anyone explored the reason you have so many? I am talking about looking for signs of vasculitis, an inflammatory condition inside the blood vessels that can trigger migraines. This can be picked up on MRA, an MRI with contrast that shows up the brain vessels, and by blood tests showing inflammation. Vasculitis can occur by itself or in conjunction with autoimmune, connective tissue disorders, like lupus, for example. Your neuro can run those tests with follow up by a rheum if anything comes back positive. There are many good migraine meds, and many preventive meds. You definitely should be on preventive medication, and there are several. I would try every one until you find what works. I would also research "chronic migraine" for more info. You need to be a squeaky wheel and if your current Drs aren't helpful enough, try to find a headache specialist neurologist (some sub-specialize in headache). I hope you have had a thorough work-up to look for vascular abnormalities, like an MRI, in past, but the MRA is actually better for this problem.

 
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Old 03-11-2013, 01:33 PM   #3
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Re: so desparate...what else is there to do???

anyone heard of intracranial hypertention where they do a lumbar puncture and take out some spinal fluid to relieve some pressure? then they put you on lasix?

I am grasping at anything here. I live in NC and the closest place for medical marijuana is DC but you have to be a resident. I know someone who went up north to get some for their daughter who had cancer but not well enough to ask them how they got it. I would try anything at this point...do you guys know anything about this and does it help with migraines? I've read that it does. I'm on SS disability at age 37 due to my back, migraines, anxiety and depression and I've read it can help with all these....

 
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Old 03-17-2013, 01:41 PM   #4
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Re: so desparate... what else is there to do???

I have chronic migraines too and have suffered from them for 30+ years. I have tried everything from hypnosis to botox (years before it was even available as a treatment in the U.S.) to all the medications out there and everything in between. I was hospitalized last year for five days with what they called a "status migrainosus", a really debilitating migraine that would not go away even with all the hospital treatment, which finally subsided two days after I left the hospital (7 days total). That one was the worst ever. I have been on all different home medications, from narcotics to Imitrex and by far the one that works best for me is Zomig. Within an hour to an hour and a half the migraine is gone and I can go on with my day. I have also been in migraine study that was marijuana, which I don't recommend as a migraine treatment, as soon as the "high" wore off I had the headache again. I think it only masks the pain not takes it away. I agree with "ladybud" in that has anyone ever figured out the cause of your migraines, could it possibly be stemming from your back problems?

 
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Old 03-18-2013, 10:54 AM   #5
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Re: so desparate... what else is there to do???

Thank you so much Amery and Ladybug for your attention to my questions and situation.

This is where I am today. My Neuro increased my topamax to 200mg a day from 100mg I was already on. She put me on 1000mg of Magnesium, 400 mg of vit B2. My husband searched the internet and found this suppliment called "Feverfew" and it's found in many migraine "formulas"...so we went and bought that at GNC and now I take that twice a day. The reviews I read on it from the vitaminshoppe and GNC said time after time that their neurologist recommended this....so thought I'd try. My Primary, the next day put me on Lisinopril, a blood pressure med that is preventative like topamax. When I looked that up online, I saw rave reviews....plus it makes me feel better bc my BP is fine but when I have a migraine, (checked at docs offices, ERs and at home my heart rate is 130 and BP up to 150/110...so I like the BP med. I've taken it four days now and was woken with a migraine at 6 am the last two days, but I caught them early and imitrex and phenergan actually worked this time and went back to bed. When I go back to neuro, I'm going to ask for the generic of Midrin...that's one I've never tried and I've been on imitrex since 1994 and it's loosing its effects. I hope she complies. Taking imitrex so often makes me nervous bc I just turned 40 and there is heart disease in my family and when I worked as a cath lab nurse, I saw young women coming in having had a heart attach after taking imitrex (not artery build up, but spasm due to constriction of blood vessels). And I think I already mentioned that I won't touch the Cambia again bc it's way worse than vioxx that they pulled from the market in 2004 for all the cardiac and stroke deaths. Anyway

I had an MRA, Cat scan and Lumbar punction b/c my White blood cell count was elevated to rule out meningitis. My primary last Friday drew all the blood I requested which was a repeat WBC count, Female hormones which I will get to in a minute, panel of allergy tests since I'm not a candidate of scratch test due to a med I'm on, full panel of autoimmune disease, lyme disease, SED rate, cholesterol panel, and thyroid panel including a reverse T3 and fasting blood sugar. I think that is it?? I am supposed to be called on this Friday with results. Oh yeah, and a gluten Iag test. I've tried going gluten free for a couple weeks but didn't seem to help...but just found out it can take up to 3 months to get out of your system.....my husband wants me to go off dairy.

Lastly, about my female hormones....I have a theory. The time frame correlates perfectly. For over 3 years my body made too much prolactin (had MRI and no pituatary tumor)....but with high prolactin levels comes extremely low or zero estrogen levels and my body acted like I was in menopause. I wasn't and am not. Bc me and hubby wanted another baby, my egg reserve and quality and fsh and all is great...no where near menopause...but my brain wasn't communicating with my ovaries to make estrogen and therefore I would not ovulate. I took medication to take prolactin down. Started spontaneously bleeding and kept going and ended up having polyp taken out of uterus in Nov. Fast forward to now. I'm now on my 3rd
REAL period which obviously means my body is making estrogen...could all these almost daily migraines be my body trying to get used to the estrogen that it hasnt had in over 3 years?? In college 1994, I had to come off the pill bc they said the estrogen in the pill was causing the migraines. Could I be onto something?? Could it be this simple??

Still a mystery.....thanks so much for trying to help me figure it out and thanks for the suggestions!!

 
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Old 03-23-2013, 07:15 PM   #6
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Re: so desparate... what else is there to do???

I have taken generic Midrin for my migraines for years and it works great for me, very quickly. It is hard to find as the manufacturer seems to be phasing out production, but you might be able to with a little extra effort. It works well for tension headaches too-just different directions on dosing. Let us know what your results show when you get them.

 
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Old 03-25-2013, 09:50 PM   #7
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Re: so desparate... what else is there to do???

I have had chronic tension headaches/migraines for the last 15 years (or so) and I took Midrin for a long time, until I couldn't get it anymore. Now, my doctor has me on Treximet. It seems to work pretty well. It makes me pretty sleepy, which Midrin did as well, but it makes me feel about the same as the Midrin did and if it doesn't fully get rid of a really bad migraine, it at least knocks the edge off, which is as much as I can hope for sometimes. More often than not, though, it gets rid of it. For me, the cocktail has been some combination of: muscle relaxer, beta blocker (currently Propranolol), mild anti-depressant like Amitriptyline... but my new neuro took me off that because it wasn't doing much and switched me to Zonegran which is an epilepsy drug, and birth control which regulates my hormones. The cocktail seems to be working. I can definitely tell when I'm off any of my meds. I have headaches more frequently and more intensely. Prevention is definitely the key. If you have back problems already and you're having chronic headaches that you know are tension related, you might talk to your doctor about physical therapy, specifically for your headaches. I'm currently in PT and I'm seeing good results. I've noticed more small, annoying headaches, but fewer knock-me-out migraines, and the therapist thinks it may just be my muscles adjusting to new motions and changes in my posture. You've got to find the cocktail that works for you and again, if you can't get ahold of the Midrin, which I can only find sporadically, try the Treximet.

I really do hope you can get to the bottom of everything. At certain points in my life, I've had up to 5 or 6 headaches a week. People don't understand how I can do things like go to work with a headache or go to a concert... it's because I have no choice. I've lived with them since I was in elementary school. I don't allow them to run my life. I force myself to go out and do things, even when I don't feel like it. Sometimes I have to leave the concert or the double date early, sometimes I have to go to the bathroom at work to puke, but by god, those headaches only have the power over me that I let them have. And I keep fighting, every day. So keep fighting!! You might not feel like you're winning, but every day you will get closer to finding your cocktail of drugs, and your doctor that just makes everything click for you. I promise, there will come a day that you WILL claim victory... even if it's just a week or a day without pain... that week or day is WORTH IT. And you will relish every second of it. Remember how I said I used to have 5 or 6 headaches a week? Now, I have maybe 1 every two weeks. It may not seem like a lot to some, but to me, and other sufferers like me, that's HUGE. Keep fighting. You'll get there.

 
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Old 04-01-2013, 10:43 AM   #8
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Question Re: so desparate... what else is there to do???

I feel for you dear. I too have suffered with them since the mid 90's. Everyear they have steadily got more severe, lasted longer, and continually change. I have many of your concerns too. I have had botox- no effect. Had to quit job and find a different line of work and now the ER is not an option. Please tell me about cambia and why you are so against it if it gave you relief. My average daily headache responds to nothing and I transition from one type of pain to another. Sleep is very difficult most nights even w/ meds. If I get the stabbing excruciating pain on temple my 6mg imitrex injection works. (only if it is on temple) anywhere else no.

 
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Old 04-01-2013, 04:33 PM   #9
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Smile Re: so desparate... what else is there to do???

So sorry you are going through this!!!! I too, have had migraines. My neurologist at Vanderbilt finally got me on the right dose of medication of Vitamin B2, Topamax, 10 mg Amitriptyline, and 250 mg Depakote ER. It took 1 month before the daily headaches went away, but they finally stopped! Depakote does cause weight gain, so you have to try to stay physically active. Best of luck!

 
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Old 04-03-2013, 02:08 PM   #10
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Re: so desparate... what else is there to do???

Quote:
Originally Posted by praybelieving View Post
My migraines rule my entire life. I've had them since 1994, but only since January have I had daily migraines or tension headaches. My primary doc and my neuro have thrown out so many meds for me. Imitrex is not working anymore! I refuse to take Cambia b/c it's way worse than vioxx even though it does help a little (i have thrown it up a few times).

I had quite the scare about a month ago. I was so desperate that I almost died (very unintentionally). I used to be on fentanyl patches for severe back problems, but I came off and only take a percocet if needed for my back. Well, on day 16 of this migraine streak...I put on a patch with the intentions of being sedated so I could sleep a couple days and thought if I wasn't stimulated that I'd break the migraine. Well, not being sleepy enough at bedtime, I put another patch on....[stupid!!!]...I am no longer tolerant to these patches...and next thing I remember is paramedics and firemen putting me on a stretcher...my husband woke to find me barely breathing and gasping for air . I just needed relief and no one could figure anything out. Spinal tap was normal, CT scan normal, MRA normal....so bandaid of toradol/reglan/benadryl slapped on and released. Got into a neuro 3 days later and the migraine broke after an imitrex injection and a cambia. My gosh, my eyes and head was so sore. But since then, they come every couple days with tension HA's b'n.

I feel like I've tried every med except inderal. and ive never tried botox. The more time goes on, I get so angry...I wish everyone who knows me would have one migraine b/c I feel they have no clue what I go thru. I am starting to get bad thoughts....but no, its a selfish act and I would never leave my 3 kids...although I feel they are neglected right now.

And I keep reading about all these rebound headaches!!! Every med I take gives rebound headaches! I don't know where to turn....or what to do...I can't go on much longer like this....

 
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Old 06-18-2013, 01:40 PM   #11
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Re: so desparate... what else is there to do???

Have any of you had a sleep study done? Apnea causes headaches too.

 
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