Migraineurs Support User Group
Grr to Chronic Migraines
About This Group:

A place for migraineurs to discuss anything and everything related to migraines. Topic suggestions: Think of this as a support group for migraineurs. Reach out to group members when ever you need support. Give your support to fellow migraineurs. You, as a migraineur yourself, probably have a wealth of knowledge to share with others. The knowledge that you have could vastly improve the quality of life for another group member. Share share share! Discuss your current acute and preventative treatment plans. Ask others about their current acute and preventative treatment plans. Discuss past acute and preventative treatment plans as well... we can always learn something from what didn't work! Discuss your own personal tips and tricks for lessening the severity of acute migraine attacks. Post about your upcoming GP or Neurologist appointments. Ask other group members questions about what to expect and suggestions on how to prepare. Update fellow group members on your progress... both on set backs (so that we can provide support, suggestions and hope!) and on successes (so that we can congratulate you and so that you can provide other group members with hope!).

Founded by marileew on September 27, 2009
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Grr to Chronic Migraines

First of all hello...just discovered this site! I am Angela, 38 from Canada =)
I have so many questions...and currently have a migraine now...so please bare with me if I don't make sense! And pray I am in the right group to be askin this!

I've suffered from migraines/headaches since my late teens. Only last year did I finally see a neurologist and get a CT scan. I couldn't get the "dye" for the scan because I was only born with one kidney and the neuro said the dye could damage the kidney. Either way, the scan came out good. So, here I am not knowing what causes them. I've done the charts and understand the hormone thing and figured out the barometer (low pressure). My charts show only five days no symptoms =(

The neuro put me on 16 mg of Atacand. Charts showed a slight improvement. I was suppose to go back and see the neuro but honestly...I gave up. He didn't answer any of my questions...just said I was normal!  Currently, am on no meds for migraines...and have gone from maybe 15-20 days migraine free back to five. When I say 15-20...I mean it's a headache not a migraine.

My questions are what have other people tried...either drug wise, or alternative medicines.

Why does ones brain feel like it's bouncing around my skull?

Do others feel like, I don't know how to describe...totally depressed?...before a major attack comes? I don't know how to describe the feeling other than just not right.

If my head is twitching like crazy above my right ear should I be worried?

Is it bad for the migraines to be always in the same spot?

Why are phantom migraines with no pain? Not that I want the pain..but where did it go! What's with the symptoms...confusion, depth perception, light and sound, etc.

And the most important question...HOW do you all get through your day!?

Sorry for rambling..it's hard to concentrate...I hope I made sense. Look forward to any answers and thanks in advance!

Tags: Migraines
Hi!  Did the neurologist feel an EEG was not necessary in your case?  The twitching might be a muscle spasm.  I was diagnosed years ago with 60 percent migraine 40 percent muscular headaches.  The paper would say "intractible migraines".  Intractible I found meant stubborn, hard to manage... an apt description.  

Sometimes I feel very tired before a migraine comes on.  If you get a warning like that, they say eating something and some exercise might help stave it off.  If migraines are always in the same spot, it might be that there is a blood vessel that has a defect that needs repairing- someone where I used to work (before I became disabled) told me of a lady where this was the problem- headache always in the same place, blood vessel was repaired and no more migraines.  Well, I get migraines on one side or the other, sometimes both sides at once and my neurologist I had at that time informed me that lady's situation was not mine.

I have many triggers, from changing sleeping patterns, to certain foods, weather, too much sun, crying, stress, my orthostatic tachycardia syndrome, sleeping in the wrong position, etc..  I have tried drugs in every class of preventative, including ones that weren't labelled for migraine preventative at the time the neurologist tried them on me.  I have done acupuncture, herbal paks, taken prescribed herbs, worked on iron deficiency (which can cause headache I recently learned), cut out foods I found triggered a migraine, use ice wrap around paks for the head.   For awhile, my body was addicted to demerol and it was losing effectiveness for the pain.  Before my hysterectomy I would get huge menstrual migraines.  

Currently, I get migraines about 5 times a month.   Regardless of a maxillofacial specialist recently informing me that TMJ issues do not cause migraines, I feel wearing my flat planed stabilization splint nightly helps with the migraine situation, as the last time I didn't wear it I awoke with a monster migraine.  When I get a migraine, I now take over the counter pain relievers and use ice, paks holding off until evening to also take a phenergan tablet 25 mg.  My emergency medication for migraines is demerol pill- I rarely take it- I believe less than a handful of times a year not wanting my body to get addicted and not wanting it to be ineffective.  I sometimes think about going to an acupuncturist, when things feel like they are spiraling downhill, though I haven't since I've moved to the state where I now live.

How I get through- by God's grace and His mercy and compassionate care for me.
I am going to get a second opinion. I did not trust my neurologist...so when I do go see the new one I will ask about an EEG. I've had them for so many years my family Dr. said that if I were to  have died it would have happened already...she is joking...I try and have a sense of humour about them.

I almost always get them in the same spot, on the right side...twitching above right ear. If I get a migraine in a different spot it makes me nauseated cuz am not use to the pain there. If that makes sense! I will also ask the neurologist about this too. I was thought everyone got migraines in the same spot/side.

I do use ice packs but I put them on the wrist or somewhere far from my head to draw the blood away. I find it more effective then putting anywhere near my head. I currently take Tylenol #3 for pain...no I am not a rebounder. I only take maybe one then suffer the rest of the day. I don't take them everyday. The migraine I had while writing to here lasted one week. I got a bit of relief taking Maxalt RPD...it melts on your tongue..works within 10 minutes! Gave relief for almost 24 hours. =)  I too have narcotic drugs and don't like to take them...I wait until it's really bad..say two weeks non stop pain and I am about to go crazy.

I am healthy today. Trying to catch up to all the laundry, and housework that was neglected last week. It's amazing how I really don't care about life when I have a migraine. I just want to curl up in a ball and hide away. But, I am stubborn. If I did that, half my life would be spent in a dark room by myself. So, I struggle my way through work, come home and neglect my housework until it passes!

Thanks for takin the time to reply! I

I started using ice on my head I think because of something I learned when I was in nursing school- that the cold signal is stronger than the pain signal.  Often times it helps, though occasionally it seems the pain worsens and cold doesn't outrank but rather increases the pain.  But usually it is helpful.  I've never heard of using ice at such a distal location, though I have heard of acupressure and acupuncture to the the hand between thumb and pointer for migraine and the middle finger I think in another culture's medicine with some connection to the head.  

I've tried/taken maxalt, frova, amerge, imitrex, and cafergot, if memory serves me correctly.  I don't think I took tylenol number three for headache typically at least, but did for post surgery.   I did take fiorcet with and without codeine.  Fiorcet is what my grandma used to take for her headaches.  I also took excedrine migraine.

It is important to trust your doctor, so I'm glad you'll be searching for another neuro doctor.  Migraines when especially bad can be dehabilitating and the enjoyment in life can seem to grow very dim.  But knowing that this too will pass helps!
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