Ok girlies...need some prayers please and some insight if possible...

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.

Cluster Headaches

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!!!!

Re: Ok girlies...need some prayers please and some insight if possible...

Re: Ok girlies...need some prayers please and some insight if possible...

I just had to give you a hug

I get chronic migraines, so I know the pain... and it blows!

but I'm not on any drugs for it, only because I don't have Rx coverage. I just self medicate.
1 midol extended relief chased with 2 advils and water... when it gets REALLY bad, I do 2 midol and 1 advil.

I know, if I was told the side effects and planned on having kids one day, I wouldn't do it. thats just me, and you can ask anyone that knows me... I'd take the drugs, but i would never risk a child, or the CHANCE of having a child. thats just MHO.
besides that.... if you DO take it, and it DOES work... and you decide its time for a baby... you can't take the drug while TTC or during the pregnancy... imagine the pain then.
this drug isn't going to correct anything, its just going ot hide the symptoms, correct me if i'm wrong.

I'm just saying, I wouldn't do it. how about trying something 'natural'..

Re: Ok girlies...need some prayers please and some insight if possible...

You are in my thoughts.

Re: Ok girlies...need some prayers please and some insight if possible...

Re: Ok girlies...need some prayers please and some insight if possible...

I'm in pharma sales and used to promote a migraine med. I learned all about migraines, tension, and cluster headaches and while I don't suffer from headaches (thank goodness) I can only imagine how horrific cluster headaches must be.

Re: Ok girlies...need some prayers please and some insight if possible...

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Posted by Im_My_Own_Princess

I just had to give you a hug

I get chronic migraines, so I know the pain... and it blows!

but I'm not on any drugs for it, only because I don't have Rx coverage. I just self medicate.
1 midol extended relief chased with 2 advils and water... when it gets REALLY bad, I do 2 midol and 1 advil.

I know, if I was told the side effects and planned on having kids one day, I wouldn't do it. thats just me, and you can ask anyone that knows me... I'd take the drugs, but i would never risk a child, or the CHANCE of having a child. thats just MHO.
besides that.... if you DO take it, and it DOES work... and you decide its time for a baby... you can't take the drug while TTC or during the pregnancy... imagine the pain then.
this drug isn't going to correct anything, its just going ot hide the symptoms, correct me if i'm wrong.

I'm just saying, I wouldn't do it. how about trying something 'natural'..

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Thanks for this. Advil or anything over the counter doesn't work. The ONLY think that makes the headaches go away is my oxygen tank. It TOTALLY s*cks. I guess the medication would hide the symptons per say. They don't really know what cause cluster headaches, they just know they are there. I of course wouldn't take it when pregnant or anywhere around TTC, I can't, as per my sister. When it feels like I've been hit in the head numerous times a day though, I would try anything to make them go away.

My cousin is a nurse practioner and she informed me to try certain vitamins. When I asked my doctor he pretty much told me not to waste my time or money but I'm going to try them anyway. My sister said it can't hurt and like I said, I'll try ANYTHING! It's just REALLY frustrating to have such a rare diagnoses and nothing seems to be really working. The Varapimil does help with not getting the headaches as often, except for the past couple of weeks they are coming on more and more (hense 'cluster')!

Re: Ok girlies...need some prayers please and some insight if possible...

omg I am sooo sorry you're going through this

Re: Ok girlies...need some prayers please and some insight if possible...

That the steroids work...

I don't know much about the shot or about Lithium unfortunately but I hope you get some relief with the steroids. I would agree with your sister takl to your OB I know girls that have been on the shot and some love it, some don't. What about a steroid free IUD also to avoid being on another medication. They are suppossed to me the MOST effective. I know most OB/GYN's won't give them to woman who haven't had kids but maybe under the circumstances they would consider it.

Re: Ok girlies...need some prayers please and some insight if possible...

Praying that the steroids work for you and you are pain free!

Re: Ok girlies...need some prayers please and some insight if possible...

Lots of Prayers and Hugs for you



I am on the shot (actually about to go off it in a month) and love it!! I went on it because of problems I was having with Aunt Flo. I got no side effects like weight gain at all. After about 3 months on it I never got aunt flo- no cramps nothing. I wish I didnt have to go off of it but I have been on for too long.

Re: Ok girlies...need some prayers please and some insight if possible...

that the steroids work.

I used to be on the Depo shot and it was AWESOME. The only drawback (and the reason why I stopped it) was that you have to get it within a certain timeframe every three months, and that timeframe happened to be while I was dealing with a major family emergency out-of-state, so I was SCREWED. Other than that - it's really great! No weight gain, no mood swings, no popping a pill every single day.

Re: Ok girlies...need some prayers please and some insight if possible...

first and then that the steroids work

I suffer from migraines and I take daily meds for it, I've always had migraines, but my doctors always blamed other things for it until about 2 years ago when I got a new doctor and she finally understood and prescribed something. Life is soo much better now with meds that work.

Re: Ok girlies...need some prayers please and some insight if possible...

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Re: Ok girlies...need some prayers please and some insight if possible...

Linda so sorry you're going through this!!! I really hope the steroids work and these god awful headaches will go away!

Re: Ok girlies...need some prayers please and some insight if possible...

i have no advise to offer ... but i can give you plenty of hugs and prayers ... i seriously hope the steriods work out for you!

Re: Ok girlies...need some prayers please and some insight if possible...

Thanks so much everyone! I'm hoping the steroids work but it's not looking good so far, however I'm only on them since Friday so here's hoping.

I have a call into my OB and HOPEFULLY she calls me back and I can speak to her more clearly on the Lithium matter. I thought about a second opinion but a friend of mines sister is a neurologist and when I first mentioned to her my symptoms and diagnosis and agreed with everything the doctor had tried and said (this was earlier this year). She asked who my doctor was and told me there is no reason to come to a second opinion because if I want the best, I've gotten pretty close. My doctor informed me of headached specialists but because a lot of them are cash only pretty much he just calls them for me and then relays back to me. Starting tomorrow I'm going to keep a diary of the headaches so when I return on the 7th to him I can show him how long, what I'm doing and go from there.

Thanks again girls! It's hard to explain how these headaches make me feel (to the point where in the beginning I was in bed for 2 months) but it's nice to know your girls are there to always listen!

Re: Ok girlies...need some prayers please and some insight if possible...

omg i can't even imagine....

Re: Ok girlies...need some prayers please and some insight if possible...

I remember learning about cluster headaches in PA school. You poor thing.. I cannot begin to imagine what you are going through. They are devistating. Hence the nickname 'suicide headaches'. My heart goes out to you and I will pray for you.

Re: Ok girlies...need some prayers please and some insight if possible...

I hope you have luck with the steroids. I see an awesome Headache specialist and he does take insurance not all plans but it may be worth giving his office a call. He is located in the Bronx: Dr. Brian Grosberg, Montefiore Headache Center, 1575 Blondell Ave, Bronx, NY 10461 (718) 405-8360. I suffer from chronic migraines and I do not know what I would do with out treatment from a specialist who really understands headache.