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I dont have a single friend in this world who suffers from migraine..

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Lynette
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I dont have a single friend in this world who suffers from migraine.. Empty I dont have a single friend in this world who suffers from migraine..

Post  Lynette Wed Jan 05, 2011 12:54 pm

I'm looking for friends who could possibly share & understand the difficulty of going through life with this huge dragon on my shoulder called 'migraine'.
After trying everything known to man to prevent & treat this disease, without luck to date, i continue my search for a better quality of life.
The alternative is death & my children would be devastated if i left them. So you see, i'm between a rock and a hard place, most probably like all of you on this site.

I live in Australia, would be happy to talk to anyone regarding any aspect of this disease, especially treatment experiences people have tried.

Help...
Lynette
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Post  Paradox Wed Jan 05, 2011 2:47 pm

Hi Lynette,

I think most of know exactly what you're feeling. Wishing you just wouldn't wake up in the morning.

We understand here. I have many close friends here because we try not to judge.

Welcome. Glad you found us.
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Post  Mini Wed Jan 05, 2011 2:51 pm

I am so sorry about your suffering, Lynette. We do know how hard it is to deal with migriane, and coping with family life at the same time. Specially of you do not get much support around you.
Even if you have loving friends and family, no one knows how bad it hurts, and how difficult it is to carrry on from one day to next all the normal jobs that other people take for granted.
This is a great place - we do understand. So I am glad you've found us.

We also know from experience that we must not give up trying to get a better treatment.
Sometimes it takes few years to find that right doctor, or right combination of medicines before we get better quality of life. But many of us find improvement as the time goes by. It means trying and demanding better medical care, as well as research on interenet and never loosing hope.

What kind of things have you tried in the past?



Last edited by Mini on Wed Jan 05, 2011 3:07 pm; edited 1 time in total
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Post  dcook60 Wed Jan 05, 2011 2:59 pm

lynette, we are glad you found this forum, THE BEST. now you have bunches of friends who understand!

there are many here who have dealt with the monsters for 30-40-plus years. we have a ton of experiences to share. my suggestion would be to spend several hours reading the threads whose titles sound intriguing to you.

but please don't do it all at once; your head will likely protest. i'm on here several times a day, but for just short periods at a time, and i think that's kind of the norm.

those of us with treatment-resistant migraines are here because we want to share what does and doesn't work. there are no panaceas, and you already know that.

we like to help others avoid some of the money-wasting, worthless treatments. (there will always be those who defend them, of course, so let the buyer beware.....)

ask lots of questions and share your own journey, too. we care. dianne

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Post  sailingmuffin Wed Jan 05, 2011 7:27 pm

Hi and Welcome,

Like the others have said, you have founda great forum here. Many of us have refractory migraines. I have tried everything- the only things that have helped for any length of time have been an implanted occipital nerve stimulator, and several medications- mainly zoloft, pristiq, tyleonol 3, klonopin, and zanaflex. I have had migraines for 13 years now- and I am only 3O.

So sorry you are having such a rough time. Feel free to post anytime.

Pain free days,
sailingm
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Post  Lynette Thu Jan 06, 2011 2:10 am

Thank you all so much for your heart felt reply, it means a lot to me to know that there are likeminded people out there who are struggling with the same demon but at the same time, have each others back's here with support and information, ideas, etc.

I remember my first migraine at the age of 15, it included a lot of vomiting & lots of pain.
They were far and few between but as i got older they got worse over the years. Now here i am - 35yrs later and i have been waking up with a migraine every day for the last 2 weeks. This has never happened before. I'm quite afraid. I have made an appointment to see my neurologist for next monday morning (will keep you posted of his advice), am very keen to see him and i Do hope he has something / anything for me.
In the past i have tried all the prescription preventatives that he has thought of, without success, so i am hoping he has something new.
3 months ago i had botox injections around the front of my head & forehead exclusivley to Prevent migraine's - No, it did not work at all. What a waste of $300. I thought it may have been a great investment.

Thank you my new friends,
Lynette

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Post  lissy Thu Jan 06, 2011 3:01 am

Hi Lynette

Welcome to the forum. I only discovered this forum late last year and its been an imense support to me. I think most people here know what its like to wake up every day with a migraine. I spent the greater part of last year with constant migraines - pretty much going in and coming out of a migraine was my daily battle. I've only been dealing with these monsters for 1 year but its been 1 hell of a year! I've had 3 days break from a full on migraine this week which has been awesome. As most have said, please post or email here whenever you like.

I also live in Australia (Western Australia) so its nice to see a few Aussies in here. I was desperate to find someone who understands as well seeing as none of my friends / family suffers from migraines. I think my Aunty had a few migraines when she was younger and my Nan also for a couple of months but that's it. It was such a relief for me to chat with people who truely understand what this is like.

Take care.
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Post  Mini Thu Jan 06, 2011 8:03 am

I forgot to mention, Lynette, that many of us found that one thing that a short course of steroid (prendisone, or similar) often helps to break a constant pain cycle when everything else fails. So you can discuss this with your neurologist.
This is not something that can be used often, as there are side effects, but when everything else fails steroid has been very effective.

You mention also Botox - this has mixed sucess - much depends on the skills of the person who gives you the injection, many doctors simply do not have enough practice in this.

Another treatment with quite a high success rate is an injection at the base of the skull, (on one, or both sides at the very top of your neck) with the mixture of painkiller like lidocaine, and steroid combined. This injection can seriosuly reduce the pain for some people, even for ar long period of time.
But again, you need a highly experienced doctor to perform the injection so it hits the very right spot.

You might discuss some of this options when you see your doctor on Monday. Good luck and let us know the outcomes.
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Post  mxgo Thu Jan 06, 2011 8:16 am

Lynette said:
i have been waking up with a migraine every day for the last 2 week

When I told my neuro that I was waking up with headaches most nights, he prescribed Baclofen. The few times that I tried it, it seems to work. I have not used it much, since my acupuncture sessions seem to be working.

Before that, the only thing that worked (on moderate headaches that is) was ice packs.

Martin
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Post  02R96 Thu Jan 06, 2011 8:52 am

Hi Lynette,

Welcome to the forum. I'm one of the few guys that hang out here. I've been dealing with migraines for well over 10 years. Lost two jobs because of them. Nobody really knows what they are like. Some members of my family think I'm a drug addict because I use so many pain killers. I had a six day stretch over Christmas (starting on Christmas Eve) where I had a nonstop headache. I just stayed in bed most off the time. I've been to all kinds of doctors and spend thousands of dollars trying to figure out what the cause is. No luck yet.

Sometimes it can feel like you don't have a friend in the world. If you don't get migraines, you'll never understand what it's like. It's not just a headache. But you have friends here, so don't be a stranger. Lots of good information is shared so if you have a question, don't hesitate to ask!

Cheers!
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Post  estre004 Thu Jan 06, 2011 12:57 pm

Lynette - yes, a steroid pack would probably interrupt the cycle. Welcome to the forum!

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Post  Guest Mon Jan 10, 2011 5:56 pm

would you tell me a little about your acupuncture i.e. how many sessions did you have before noticing an improvement, how many sessions are you having per week etc. I believe you have chronic daily headaches-migraines as I do. Also, are you having a lot of improvement or a little...thanks: Gail

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Post  mxgo Mon Jan 10, 2011 7:07 pm

Gail asked:
would you tell me a little about your acupuncture i.e. how many sessions did you have before noticing an improvement, how many sessions are you having per week etc. I believe you have chronic daily headaches-migraines as I do. Also, are you having a lot of improvement or a little

First of all, I believe that my chronic daily headaches are caused by muscle tightness. So far, I tried four acupuncturists for my headaches. The best one, on the first session, the headache was still there, but my head was clear, the gastritis was gone (for that day only), and lower back was better. I could still feel the headache, but I felt good. Unfortunately, this man lives about 2.5 hours away: San Jose California.

My sister who is a migraineur of 45 years and lives in San Jose, went to him with weeks of chronic headache, vertigo, and upset stomach. After her first session, she told my brother-in-law, lets go eat, I'm really hungry. She goes once a week for the migraines and IBS. She laid off for about a month, the headache came back in a milder form. After returning to him, she emailed me, saying I feel so gooooood.

Here in my home town, I went twice a week for a month, now I am going once a week. Unfortunately, I can not predict which session is going to give me relief for more than two or three days. However. there was one week where I was not sure if I had a headache or not for most of that weeks. If a headache did come up self massaging the back of my head gave me relief. But, on the next session I had moderate headaches for the next four days, I took Midrin twice during those days. She was trained in Japan in the Japanese Meridian System.

I will try to make it to San Jose next month to see family and the acupuncturist. To be fair to this acupuncturist, my neck and shoulder muscles are no longer as tight, as they were with the San Jose acupuncturist.

As to improvement, my headache pain level, before neuromuscular therapy and acupuncture, was moderate with nausea and mild dizziness with occasional forays into severe pain levels. The preventative side effects were not good, but the abortive Midrin did cut down the headache to mild with slight grogginess. Now the pain level is mild, with an occasional moderate pain level day at least once a week.

On a side note, I had my PCP check my Vitamin B12/Folic Acid and Vit D deficiencies. Both deficiencies can cause muscle pain and headaches. My Vit D deficiency is very low, (the B12 and folic acid levels were high, so I have an appointment with the PCP to get the levels up. Hopefully, that will help with the muscle tightness and cramping, thus helping the headaches.

As others have said, try one for 6 to 10 sessions, if there is no improvement, try another. They all use different meridians or combinations of meridians to treat headaches. I recommend trying one educated in China, Korea, or Japan. They have quite a bit of more experience.

Martin


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Post  lissy Tue Jan 11, 2011 3:18 am

I also have very regular Acupuncture sessions - 1 -2 a week depending on how badly things are. In terms of pain relief for me, there a number of needles he uses on my face and within an hour (some people feel relief instantly but my brain seems to take a while to register these things), the pain has gone away completely from my head. It really helps relieve my neck pain too. The downside is it only tends to last a day or so before gradually coming back. I have certainly noticed the difference between different acupunctures though so its definately trying a couple of different ones if you find no relief.

Interesting about your low levels of VitD Martin - I also have low levels and have been on a supplement to get them up. I've just posted a new topic about homocysteine levels and the role of Vit B12, B6 and Folic Acid which may be of interest too. Something I'm going to look into a bit more.
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