One sided migraine on and off for 20 plus years/ Hemicrania Continua

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Beachbumgirl
Regular Member


Date Joined Jan 2016
Total Posts : 22
   Posted 6/1/2017 1:58 PM (GMT -7)   
I am a 40 plus female married mom of two boys.
They are now 22 and 26yo. They were little when my migraines began
And I began seeing Neurologist after Neurologist trying to find out why I was getting migraines. No one knew.
Forward 20 yrs. and I was just diagnosed by a headache specialist
With Hemicrania Continua. I was getting constant migraines on one
Side of my head and very few things took it away.
UNTIL we tried a drug called Indomethacin. Taking 75mg three times a day is a GAMECHANGER!!!!!!!!!!!
I never had a resolution to my migraines that quickly. yeah
So everyone does not have this diagnosis, but if you think you may, speak to a headache specialist .

I hope this helps even one person.
tongue

BnotAfraid
Forum Moderator


Date Joined Apr 2012
Total Posts : 7280
   Posted 6/4/2017 9:02 AM (GMT -7)   
Thanks for posting,

This med never worked for me, I am so glad it has worked for You.

I take a combo of topomax and baclofen.

Have a great day!
Peace
Moderator - Depression

"...when the gift of sight is cause enough for jubilation."
Billy Collins from the poem. HIGH

DX: reverse Trigeminal Neuralgia;Cluster headaches; Atypical face pain;Hemicrania Continua; raynauds;complex PTSD; recurring MDD,disassociative disorder;

Beachbumgirl
Regular Member


Date Joined Jan 2016
Total Posts : 22
   Posted 7/19/2017 6:48 AM (GMT -7)   
Sunny days ended after my stomach did not like the Indomethacin pills. I started the same drug in a lower dose (just as strong) rectally. I was taking it three times a day. They were wearing off after 4 hrs.
I visited with my headache specialist.

Last week, I needed to be hospitalized for 3 days to break a 7 day migraine. That was IV dhe and IV Toradol. It finally broke from a level 10 to a 5.
I followed up with him yesterday, I am starting Methylergon Maleate
0.2mg tablets twice daily to start and increasing slowing. He gave me a chart to follow. This can cause unwanted side effects he says, so after 6 months I need a drug holiday.

After taking the first pill last night at dinner, today was the first morning I didn't wake with a migraine.

Has anyone used this drug before??
It's new to me.

I'm starting a new job soon and in the back of my mind all I can think of
is hoping my migraines don't get in the way ๐Ÿ˜Š

BnotAfraid
Forum Moderator


Date Joined Apr 2012
Total Posts : 7280
   Posted 7/31/2017 12:44 PM (GMT -7)   
Yes, I went through that.

However, my co pay was 3k

So my GP told me that a 5day step down of prednisone usually does the same thing.

So next time I tried that and it worked. I would like to say also I get Hemicrania, Trigeminal Pain and Cluster pain all at once, and the Pred. worked for me.

I know it does not work for everyone, but a little more knowledge, is a little more armed to try something else.

Peace
Trina
Moderator - Depression

"...when the gift of sight is cause enough for jubilation."
Billy Collins from the poem. HIGH

DX: reverse Trigeminal Neuralgia;Cluster headaches; Atypical face pain;Hemicrania Continua; raynauds;complex PTSD; recurring MDD,disassociative disorder;

Beachbumgirl
Regular Member


Date Joined Jan 2016
Total Posts : 22
   Posted 1/26/2018 8:56 AM (GMT -7)   
Thank you Trina.
Yes, not cheap to go to MHNI! I have tried steroids in several ways, even being hospitalized for them twice in the last month. They tried high dose IV over several days. They have tried everything I could think of. Even now before we leave Iโ€™m coming the internet for any new data.

Thank you for your help!

Beachbumgirl
Regular Member


Date Joined Jan 2016
Total Posts : 22
   Posted 2/3/2018 8:40 AM (GMT -7)   
hi Everyone. The MHNI was not quite what it was made up to be.
My initial evaluation went fine yet very long ( 9 hrs) with no food on site,
Tip #1- bring a goody bag with snacks,waters. Small meals. I will say there is a vending machine
With odds/waters.
When my evaluation was done, I spoke with Mdโ€™s there to form a plan. My plan included multiple scans
Incl: MRA, MRI with and without contrast and other special studies. One those studies were approved
By the ins company and done. The mds then put you on a list for admission if your criteria. There are
10 single bed rooms. Thatโ€™s it! I was told the waiting could be one week or so, not 3 weeks

So after much discussion, we flew back to our home town. We will do the testing here. Once the testing clears normal, I am researching a Pain Management Physician.

Frustrated to say the least! Poor communication between Staff at the clinic. To their clients. Not one phone call or update after the initial evaluation, one of the RN, said to me yesterday, โ€œ we thought you left yesterday? โ€œ How would you know, there has been no communication!

I did happily find out the drugs on the inpatient unit I have used before. Not a new treatment plan.
I was really hoping this would have worked out.

As Dory says keep swimming! The docs in Michigan where I live agreed on 1 thing: they believe the pain is coming from my neck. Trying some flexeril sparingly it keeps me up all night.


Thanks for listening ๐ŸŒœ
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