Ok girlies...need some prayers please and some insight if possible...
Original post by ourwedding9510
About a year ago I got diagnosed with a rare conditions called cluster headaches (aka sucide headaches). Only about 1% of the population has them and they are most common in males (just my luck right?). I enclosed a link for those of you who are curious about them.
ANYWAY, to put it into prospective, when a headache comes on it feels like a 6'3', 250 lb man took a 2x4 to the right side of my head. My headaches last for about a half hour but are the most painful thing I have ever experienced! I have tried almost every medication you could probably think of. I am currently on Verapimil and now the doctor is trying steriods again (I tried this once before, even IV and it didn't help). When a headache comes on the only thing that helps is pure oxygen (I have a tank in our apartment). We don't know what the triggers are because they come on all the time at different times. I get up to 8 a day (they were down to 1 every other week or even longer but now are back full blow).
If the steroids don't work the dr advised me that I will need to go on Lithium. I IMMEDIATELY called my older sister (she's an OB-GYN in Jersey) and spoke to her about it. She told me it's a REALLY strong drug that I will have to have monitored every so often. And she also informed me I CANNOT GET PREGNANT ON LITHIUM! We aren't planning on having kids any time soon but she told me that we can't even have a mistake as our children will come out deformed. Now I'm TERRIFIED! What if it does work and when we want to have kids, I have to go off of it and the pain starts again? What if it doesn't work? The dr said more drastic but didn't explain. What if I get pregnant on it? My sister told me to call my OB and ask her to go on the shot (it's more realiable). Is anyone on this? Do you love it? Side effects? I also have to ask the dr how long I have to be off the lithium before we can start trying and how long do I have to wait to go back on.
Please pray that the steroids really work! These headaches are going to be the death of me I swear! And I'm too scared to go on this Lithium for too many reasons but at this point I'll try ANYTHING!!!!!!
Thanks for listening girls!!!!
SoonToBeMrsCampos
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Re: Ok girlies...need some prayers please and some insight if possible...
Also.. I am usually totally not into holistic medicine- AT ALL. However, what about trying accupuncture?? Some people rave about it for certain issues.
I do not recommend going 'all natural'. But what about doing accupuncture along with what your dr recommends (meds, 02, etc). I feel like if your at the end of your rope, why not try all avenues open.
I know in fertility, our pts see an accupuncturist for 'therapy' (or whatever it's called) and come to us for their 'real' treatment. --if that makes any sense.. I think of it as 'therapy'.
Spring143
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Re: Ok girlies...need some prayers please and some insight if possible...
stacey516
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Re: Ok girlies...need some prayers please and some insight if possible...
Wishing you all the best!
bluj786
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cateydee
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Re: Ok girlies...need some prayers please and some insight if possible...
Posted by SoonToBeMrsCampos
Also.. I am usually totally not into holistic medicine- AT ALL. However, what about trying accupuncture?? Some people rave about it for certain issues.
I do not recommend going 'all natural'. But what about doing accupuncture along with what your dr recommends (meds, 02, etc). I feel like if your at the end of your rope, why not try all avenues open.
I know in fertility, our pts see an accupuncturist for 'therapy' (or whatever it's called) and come to us for their 'real' treatment. --if that makes any sense.. I think of it as 'therapy'.
i was goingto recommend acupuncture as well. it definitly cant HURT and it certainly might help! Let me know if you want a recommendation.
MisyMiss32
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Re: Ok girlies...need some prayers please and some insight if possible...
SummerBride10
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Re: Ok girlies...need some prayers please and some insight if possible...
Can't really offer any advice- just lots of love and hugs
stinenandy2010
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Re: Ok girlies...need some prayers please and some insight if possible...
Dh gets cluster headaches, however we found out he only gets them when we fly. It is something with the altitude that brings them on.
I hope you get better soon, I understand the pain you are in. Maybe its best to talk to your Ob about your TTC plans and how the medicine will affect that. Best of luck to you and I will keep you in my prayers!
ourwedding9510
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Re: Ok girlies...need some prayers please and some insight if possible...
Thank you SO very much girls! DH lives by accupuncture but I'm scared that if she tried to put them anywhere need the area where I get the headaches I might scream! Even my head hurts when I touch my hair because of the sensitivity the scalp has from the the headaches. I'm going to think about it though. My neurologist turned down all of that kind of medication but it doesn't hurt and the union I am in has free accupuncture at the union hall for 6 visits and then I can go whenever I want to DH's girl if it helps.
I'm going to look into the headache specialist as well. I had a couple headaches yesterday but today so far so good. I'm on my 4th day of the steroids and they actually seem to be decreasing the amout of headaches I get a day.
I also spoke to my OB and she informed me to take my BC for 3 months and then break for a week. She said the depot shot can cause headaches which would defeat the purpose so she adviced that this would be the best solution. If I have to go on the lithium she said she would want to speak to me more often to montior to with the BC and to just check in. As for when we are going to TTC she told me then I have to speak to my neurologist on how long it stays in my system. I'm going to try not to think about it right now and just pray the steroids work!
I appreciate all the prayers and advise you have all given me. This truly is a bunch of heartfelt and considerate woman!
FutureMrsSoltan
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Re: Ok girlies...need some prayers please and some insight if possible...
miamimerger
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Re: Ok girlies...need some prayers please and some insight if possible...
I used to suffer from massive headaches...the kind you faint from because they are so painful. The last one I had was in the summer of 2009 when I was in the middle of leading a meeting of 200 high school students. That was embarrassing to all of a sudden tell a colleague I had to leave, and I ran out of the room mid-speech. It was SO painful, DH had to come and pick me up. It was just like the headache you're describing, NOTHING helped, and it lasted for about an hour (felt like forever though).
My headaches stopped after I got my wisdom teeth out in August 2009. Every specialist that I went to told me that wisdom teeth have nothing to do with headaches, and if I've heard that, it's just a myth. Over a year later, and I beg to differ from all the doctors .
I don't really have advice to give, just lots of positive energy...I hope the steroids work!
flibbertigibbet
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Re: Ok girlies...need some prayers please and some insight if possible...
Dude... I have experienced cluster headaches before.
You have every bit of my sympathy!!!
Can you ask your neurologist for any other options?
I think sometimes they do botox as treatment for headaches -- could be worth looking into.
What other meds have you been on?
ourwedding9510
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Re: Ok girlies...need some prayers please and some insight if possible...
Posted by flibbertigibbet
Dude... I have experienced cluster headaches before.
You have every bit of my sympathy!!!
Can you ask your neurologist for any other options?
I think sometimes they do botox as treatment for headaches -- could be worth looking into.
What other meds have you been on?
Thanks Becki! I saw on clusterheadaches.com that they do botox. I think that's one of the options that he's got in mind with the more drastic ideas that we are going to start trying. I can't even remember how many things I've been on. I tried Topomax (I'll NEVER do that again), Imetrex pens, steroids, and so many other meds I can't remember but they either didn't work or I had really bad side effects. I'm on Varapimil right now which isn't too too bad, I still have a side effect from that but I counteract with it Fiber pills.
I will mention the botox to him when I go there. He gave me a shot in the back of my head once but I don't remember what it was. That was a little less then a year ago and it KINDA helped but it hurt like hell and made my head numb for about 8 hours (it was SO weird) LOL!
