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mylkmom
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Hi,
This is my first post. I have suffered with this for 15 years, well thats as far back as I can remember,Lol. Anyway, I never went to a doctor for it until this past March because it was not going away. It was every day for a 1 1/2 months. It use to go away after a few days to a week. It varied how long it would say away. It could be a few days or This last time, before I finally went for help it was 6 months with out an attack.
First the Dr thought it was a disk in my neck so I did Phy. Therapy for a couple months. We thought it was working but it turned out I was just In between attacks. He sent me to a Nero.
First he gave me Imitrex Pills. They really didn't seem to help much. Then the Dr. did an MRI and that turned out ok.
So Then he put me on Lamictal.
I had to take half a tablet at bed time for 2 weeks.(it is a 100mg Tablet)
Then half 2 times a day for 2 weeks.
Now 1 whole tablet 2 times a day.
It seems to be working 
He also has me take Imitrex Pills if I think i need too
I can fell like one will start to come on, like the pressure in front of my ear and my neck and back side of my head start to tighten up, but it has not gone into a full blown attack. I was getting it in the whole side of my face and head and down my neck before. It would vary witch side of my head it was on. But mostly it is my left side.
Knock on wood. It's been 2 and a half months now and I am praying this is working and I'm not just In between attacks again. Like I said, I do have feelings like it is coming on but does not become full blown. 
Paula
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Linda_Howell
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Re: lamictal
« Reply #1 on: Dec 8th, 2007, 7:11pm » |
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Paula,
I've read your post twice now. Have you or have you not been diagnosed with cluster headaches?
The drug you refer to is an anti-epileptic/anti convulsive medication. A lot of us have drugs we use that are initially used for other things like this.
You said you've never been to a Dr. for this until last March. Can you tell us more so maybe we can help you?
None of us here are Doctors but in totality we have hundreds if not thousands of years of experience together in this condition, and we will be very happy to help you in any way we can.
Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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mylkmom
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Re: lamictal
« Reply #2 on: Dec 8th, 2007, 8:32pm » |
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I'm Sorry, Yes I have been diagnosed with cluster headaches.
First My Dr. (not the Nero) thought it was migraines and had me on Gabapentin (Neurontin) . It helped some for a while, but I had to start taking 2 at a time, then that stopped working.
Then we tried Imitrex and the same thing happened. 2 at at time stopped working too.
That is when he thought it was my neck. When that didn't work, thats when he sent me to the nero dr.
He said that The Limactal is a Preventive treatment. Although the reason is unclear, some anti-seizure drugs, which are used to treat epilepsy and bipolar disease, seem to help prevent them.
After reading this board awhile ago and people were taking about melatonin I started taking that too.
I'm sorry I didn't post all that earlier. I was trying to give a short version.
Paula
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mylkmom
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Re: lamictal
« Reply #3 on: Dec 8th, 2007, 8:56pm » |
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I found this about Antiseizure medications and Cluster headaches... http://health.yahoo.com/work-resources/antiseizure-medications-for-clust er-headaches/healthwise--ty7356.html
Antiseizure medications are sometimes used to prevent the frequency or recurrence of cluster headaches, which are cycles of painful, one-sided headaches. Antiseizure medications most often prescribed for cluster headaches include divalproex sodium and valproate (or valproic acid).
It is not clear exactly how antiseizure medications work to reduce headaches that involve blood vessels (vascular headaches) such as cluster headaches or migraines. Antiseizure medications are usually taken daily in small doses and then gradually increased until your symptoms subside or the side effects become intolerable. Initial studies show that about half of those with occasional and chronic cluster headaches get relief from these medications when used to prevent cluster headaches. 1
Common side effects include:
* Weight gain.
* Drowsiness.
* Fatigue or lethargy.
* Headaches.
* Nausea.
* Orthostatic hypotension (low blood pressure upon standing).
Another antiseizure medication currently being evaluated for the prevention of cluster headaches is topiramate (Topamax). Preliminary studies indicate it also may be an effective medication to prevent cluster headaches, but more research is needed. 2
Paula
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Bob_Johnson
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Re: lamictal
« Reply #4 on: Dec 9th, 2007, 9:08am » |
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I'm a bit uncomfortable with a doc trying you on a med (lamictal) for which there is no track record until you have tried the well established meds (and experienced failure). Personally, I'd be challenging him on this decision but that, I admit, reflects my comfort level with working with docs.
The Imitrex pills are NOT the best choice for cluster. They simply work too slowly for most folks. The injection form is effective in the 90% area to abort an attack.
If you want to discuss options, print this out and give it to him. It can serve as a tool to gentle challenge him without getting yourself into an uncomfortable position.
====
http://www.plainboard.com/ch/chtherapy.pdf
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)
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| « Last Edit: Dec 9th, 2007, 7:21pm by Bob_Johnson » |
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Bob Johnson
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txbeck
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Re: lamictal
« Reply #5 on: Dec 9th, 2007, 12:13pm » |
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Congratulations, Paula, on finding something that is working for you. Topamax has been working for me and at 100 mg per day I have no side effects to speak of either! I don't know why anti-convulsives work, but as long as they do that's what matters. I've fought this beast for 44 years and this is the first time I've had any armor.
Don't let anyone discourage you. There are no experts. We are all learning together...including our doctors. Some are more willing to acknowledge that than others, though.
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Becky
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mylkmom
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Re: lamictal
« Reply #6 on: Dec 9th, 2007, 2:21pm » |
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I don't really like the Imitrex but I only had to take it 1 time sense I started the lamictal and it was a few days after I began.
I looked up "antiseizure cluster headache" on google
There are many links that relate to antiseizure med's that seem to be working for some people. I guess I will wait and see. But so far so good. The only time I notice one coming on is when I didn't take my med on time. But after I take it the symptoms go away. Thats why I think it is working for me.
Txbeck, I'm so glad to hear your having luck. It does help me to feel encouraged. I just wish they find out what causes these so we don't have to take med's the rest of our lives.
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justthe2ofus
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Re: lamictal
« Reply #7 on: Dec 9th, 2007, 2:45pm » |
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on Dec 8th, 2007, 6:56pm, mylkmom wrote:
I can fell like one will start to come on, like the pressure in front of my ear and my neck and back side of my head start to tighten up, but it has not gone into a full blown attack. I was getting it in the whole side of my face and head and down my neck before. It would vary witch side of my head it was on. But mostly it is my left side.
Paula |
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What your describing sounds like Clusters except for the switching sides. Although possible, it is rare for them to switch sides like that.
As mentioned in the prior posts, the Imitrex pill is virtually useless, you need to speak with your doc about the Imitrex shot. The ha's are usually gone by the time a pill kicks in. The shots work within minutes (the longest it has taken me was 15 min. the shortest was immedietly).
I wish you luck and lots of pf days.
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mylkmom
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Re: lamictal
« Reply #8 on: Dec 9th, 2007, 3:07pm » |
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Thanks justthe2ofus, GL to you too!
I'll ask my Dr about the shots.
The switching sides does not happen a lot. Only a few times. Usually after I have gone awhile without having any but not always. It seems to mostly be on the left.
Does everyone have it go into the face too?
One time I even had a blood vessel in my eye break. I guess that is what it's called.
Has that happened to anyone?
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Monty
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Yes, I often get it down the side of the face through the jaw. The eye gets puffy and droops. I have had some redness of the white of my eye, probably a small blood vessel that broke or blood leaking from inflammation and blood pressure.
If lamictal is working, I would stick with it. It has some properties in common with valproate and lithium.
Wikipedia says that it is occasionally associated with Stevens-Johnsons syndrome (which is can be bad) - this seems to happen when people stop taking it for a while, then resume full doses suddenly. Or if people take lamictal while taking valproate, or having just come off valproate.
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