Hemicrania Continua

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higgyyggih
New Member


Date Joined Nov 2015
Total Posts : 1
   Posted 11/10/2015 12:12 AM (GMT -6)   
Hi everyone,

I was doing an internet search and noticed there were some posts on here about Hemicrania Continua. I just wanted to send out an introduction and hopefully meet some others with the condition. I am 34 years old and was just diagnosed with this condition. Everything started out with a sinus infection a few months ago followed by pain on one side of my head that wouldn't go away. My doctor and I thought it was the sinus infection returning so we resumed antibiotics but it didn't help and eventually the pain got so bad I went to the ER. First time they just gave me pain meds and sent me home...second time thankfully the doctor suspected something more and I got admitted to the hospital for five days. The in-patient neurologist I saw was the first to mention the HC, but none of us thought it was that at first...turns out she was right. I'm now figuring out what dose of the Indomethacin is right for me (so far I have two days without pain at a total of 200mg a day and we hope to switch to extended release once we know what the right dose is). The only downside is the stomach side effects...we're trying a mix of ranitidine and omeprazole, but I can't say my stomach is very happy. Would love to hear from others what their experience has been!

Sherry--Anchorage, AK

BnotAfraid
Forum Moderator


Date Joined Apr 2012
Total Posts : 7483
   Posted 11/10/2015 12:06 PM (GMT -6)   
Hi Sherry,

I don't take you particular med, however I do have stomach issues with my meds.

I eat yogurt with my meds, sometimes two. I also keep a store of drinkable yogurts, because sometimes it even hurts to eat yogurt.

Water is important, I am topomax so I need it more that most to avoid kidney stones. However, hydration can help avoid episodes of sharp pains.

In the resource thread at the top of this forum is a mingraine diet link.
I suggest you give it a look and perhaps try to follow it for a few weeks as best you can. I find that it does help. Especially eliminating Red and Yellow food dyes from my diet. Easier said then done. Read the labels at the store, you may become overwhelmed. Start where you can. Alaska I think would be tough in a whole food diet.

I drink 8-10 10oz of water a day, to give you an idea. No soda except gingerale for stomach ache and tonic water for leg cramps/RLS

I hope this helps.
Peace
Trina
Moderator - Depression
Be still and know there is Peace.

Kabir says: "Student tell me, what is God? He is the breath inside the breath". from the poem Breath.
DX: reverse Trigeminal Neuralgia;Cluster headaches; Atypical face pain;Hemicrania Continua; raynauds;complex PTSD; recurring MDD,disassociative disorder;

LYaz
New Member


Date Joined Nov 2015
Total Posts : 1
   Posted 11/15/2015 7:57 PM (GMT -6)   
Hi Sherry,

I have also been diagnosed with HC after many years of doctors telling me I just had migraines. I am currently on Indomethacin 3 times a day for a total of 100 mg per day. I am trying to slowly reduce my dosage (I used to be 150 mg per day) but it is proving to be difficult. I am currently scouring the internet to find alternatives to Indomethacin as it is also very hard on my gastrointestinal tract. My neurologist recommended a few natural alternatives such as magnesium, butterbur, riboflavin and melatonin as supplements to try. I also read great things about Boswellia for Indomethacin Responsive Headaches (IRH).

I hope you have more luck than I do getting off of Indomethacin. Unfortunately, research is limited for IRH syndromes. It sucks.

BnotAfraid
Forum Moderator


Date Joined Apr 2012
Total Posts : 7483
   Posted 11/17/2015 9:56 AM (GMT -6)   
LYaz,

do you eat small meals through out the day? and have food with the med?

I eat yogurt with my meds and have 4-6 small meals a day. Drink tons of water. Definately helps the gastro issues.

I tried the natural route back in 2007 and the pain came back full blast with a vengence. I was not spared anything. I hope you have better results.

Peace
Trina
Moderator - Depression
Be still and know there is Peace.

Kabir says: "Student tell me, what is God? He is the breath inside the breath". from the poem Breath.
DX: reverse Trigeminal Neuralgia;Cluster headaches; Atypical face pain;Hemicrania Continua; raynauds;complex PTSD; recurring MDD,disassociative disorder;
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