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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> new here, what can i do?
        
(Message started by: sarahanne on Jul 28^th, 2006, 11:58am)

Title: new here, what can i do?
Post by sarahanne on Jul 28^th, 2006, 11:58am

this site is so informative and i'm shocked to read other people saying the exact words that are in my head. i had never heard of cluster headaches until 2 years ago, but i think i've probably been experiencing them for as many as 10 years.
my last experience was 2 years ago and was the most intense pain i've ever known. (yes i'm a mom. i didn't go natural, but my epidural wore off...i know pain.) i swore that i didn't know how i'd ever handle that pain again. well, here i am.
since last friday i've had a slight headache at all times. very minor for the most part but periodically i would feel that tell tale poker to the temple. it would only last a few seconds so i brushed it off. until last night. i went to bed late, around 1:30 and awoke at 3:30 in agony. within 30 minutes it was gone. i went back to sleep, exhausted, but two hours later it was back. even worse that time. i rocked and cried for the whole 30 minutes until it just vanished. i was terrified to go back to sleep. i did, only to wake up, again 2 hours later.
now i'm exhausted and i'm terrified to go to sleep. i'm scared the pain is going to hit when i'm alone with my son or when i'm at work later tonight. mainly i'm just afraid of the pain.
i don't know what to do. once you realize you're caught up in the pain, it's almost too late to go to the ER. it'll be over before you ever fill out the 50 forms. how can i go about getting some help for this? i've never been diagnosed with cluster (although i have been diagnosed with migraine and this is FAR worse) and it was a long road. doctors around here seem to think "it's just a little headache." any suggestions would be welcome. i don't know how to get through much more of this. i know so many of you suffer so much more often than i do, and i'm so sorry to sound like a whiner...but god, i can't take it.
thanks in advance for any advice. ~sarah

Title: Re: new here, what can i do?
Post by Linda_Howell on Jul 28^th, 2006, 12:20pm

Sarah,

You don't say what you HAVE tried, so please check out the links to the left. My first reaction though is to tell you to get oxygen. Its safe, cheap and no side-effects. You must have a prescription from your Dr. for it.

Go to the oxygen link on the left, print it out and take it to your Dr.

keep us informed and please know that you are not alone in this. Linda

Title: Re: new here, what can i do?
Post by sarahanne on Jul 28^th, 2006, 12:25pm

thanks for replying so quickly. the problem is i haven't tried anything. (other than crushing my skull.) i had such a difficult time getting a doctor to take me seriously before and by the time i would get to the hospital the intensity would be over. i came really close to going to the ER last night, but didn't want to have to wake my son (let alone my hubby) just to sit in the waiting room for hours. i'm wondering if i should just go to a regular doctor, explain all this to him, and pray he takes me seriously enough to give me some relief. if this goes on more than just today i'm going to do just that. thanks again, sarah

Title: Re: new here, what can i do?
Post by BobG on Jul 28^th, 2006, 12:33pm

Hello Sarah.
Yes, make an appointment to see your regular doctor.
Before you go read everything under the buttons on the left side of your screen. That way you'll be able to discuss with confidence your headaches.
Ask for oxygen (see under the button on the left).
If your doctor can’t help ask for a referral to a neurologist that is knowledgeable about headaches.
Please keep us informed.

Title: Re: new here, what can i do?
Post by Linda_Howell on Jul 28^th, 2006, 12:37pm

Quote:

i'm wondering if i should just go to a regular doctor, explain all this to him, and pray he takes me seriously enough to give me some relief. if this goes on more than just today i'm going to do just that

Do you not have a primary care Dr.? Most, but not all have very little knowledge of this condition called cluster headaches, so we have to be our own best source of knowledge. Oxygen would be my first thing to ask for and after that Lithium, Verapamil, and Imitrex or one of the Triptan drugs. These drugs do have side-effects and your Dr. should cover all bases with you in prescribing them.

If you have had them for what you think is 10 years now...I can almost guarantee that you are in cycle and it will get worse before it gets better. See a Dr. as soon as possible so you don't have to suffer longer than you need to. In the meantime breathe deeply from an AC vent or fan..drink strong coffee(the caffeine is a vaso-constrictor) and don't be taking any naps. ;)

Linda

Title: Re: new here, what can i do?
Post by sarahanne on Jul 28^th, 2006, 3:34pm

i had yet another one an hour ago. as soon as my husband gets home from work i'm headed to the doctor. i'm wondering: everyone mentions imitrex injections. in the past i've taken relpax (sp?) and it's done wonders for my migraines. would relpax in pill form be helpful as well? ~sarah

Title: Re: new here, what can i do?
Post by Charlotte on Jul 28^th, 2006, 3:48pm

I think pills take too long to get into your system, but maxalt melt is freeze dried and melts on your tongue - for me it works half the time.

Print out info to take with you. Ask about O2, preventatives, & abortives. Make sure the dr understands the frequency and rapidity of onset.

For now, do you have ice packs or a bag of frozen peas to use as an ice pack?

Did you try some caffeine and cold air like Linda suggested?

Later, between hits, read everything you can.

good luck.

Charlotte

Title: Re: new here, what can i do?
Post by starlight on Jul 28^th, 2006, 4:32pm

sarahanne,

I am sorry you are in this kind of pain. Getting oxygen is a great idea. Definitely ask your doc to see a neurologist. One other thing I will suggest is, since you don't need a prescription for it--melatonin. I get hit like you--frequently during the night--the melatonin helps me although I do need to keep upping the dose. For clusters it is recommended that you try a 9-10 mg dose about an hour before bed. Anyway, just a suggestion that might help tide you over until you see a doc. Good luck and please let us know how it goes for you.

Starlight

Title: Re: new here, what can i do?
Post by starlight on Jul 28^th, 2006, 4:40pm

PS. If you get it, make sure you get the vegetarian kind--although I haven't seen any that aren't vegetarian. Good luck!

Title: Re: new here, what can i do?
Post by walkertexasranger on Jul 28^th, 2006, 10:07pm

Sara,

Welcome to the board!! Start reading and get yourself to the Dr., then the healthfood store and start on the Taurine, Mel, and Kudzu.

The sooner the better, IMO!!!!

Keep telling us how you are doing.

Sis - sent you an IM!!

Mark

Title: Re: new here, what can i do?
Post by sarahanne on Jul 29^th, 2006, 4:05pm

thanks everyone for the replies and concern. and the information! went to the doctor last night and he gave me maxalt. it worked like a charm and i was able to sleep last night. right now i feel the dull ache that could...get ugly but at least i've got some relief if i need it. i do plan on checking out those natural remedies when i have time to get to a store. thanks again. ~sarah

Title: Re: new here, what can i do?
Post by BobG on Jul 29^th, 2006, 7:49pm

on 07/29/06 at 16:05:06, sarahanne wrote:

maxalt. it worked like a charm and i was able to sleep last night.

;;D :D :)

Title: Re: new here, what can i do?
Post by sarahanne on Jul 31^st, 2006, 12:21am

i have a couple questions and have some news, but first i want to thank everyone for responding to me and for all the information that is on this message board. i honestly do not know how i'd be surviving this episode if i weren't privy to all this information. i have received so much help, support and faith that i can get through this just by being here and i'm inspired by all of you. i just told my husband that i want to reach through the computer and hug you all. sharing such a hideous common bond really does bring people together and it has brung out the best in all of you.

my news comes next. thanks to what i've read on other parts of the site and board (and yes, my doctor too) i have started magnesium. this morning (3am) i was hit with a 7 and had to use my maxalt but tonight i felt the shadows growing worse so popped a 400mg of magnesium and chugged a red bull...i beat the bitch!!! i can't believe it but i managed to stop that attack at a managable level. yeah it hurt, but i stopped it in its tracks. i'm so happy i had tears of joy and relief. i work retail so it's not like i can pop a maxalt whenever i feel like it. it was glorious to find something that may help me avoid using drugs all the time. just wanted to share my success with everyone, it's all thanks to you guys. [smiley=hug.gif]

now my question. tomorrow i'm going to have my hubby drive me (i'm still too leery of going any further than down the road) to the natural foods market. i've read about kudzu, tourine and magnesium (which i'm not interested in giving up). what i want to know is...can i take all of these together? or a combination of some not others? and if i use red bull, should i not take the tourine? i'm just curious what others think would be effective and safe as a preventative measure as well as what could help me take as few drugs as possible. let me just say that i hate taking meds, because i hate the stoned-typed side effects. i will take them, of course, because the pain is beyond words, but i'd rather prevent or significantly dull. also, my insurance will only cover 12 pills. i've already taken 3 in 3 days. i've rambled enough. i'm exhausted and scared to sleep...but i'm off. thanks for everything. ~sarah

Title: Re: new here, what can i do?
Post by nani on Jul 31^st, 2006, 12:28am

Hi Sarah. Welcome.
Kudzu, magnesium and melatonin can be taken at the same time. The kudzu will act as a preventative. Taurine supplements also work as a prevent, but Red Bull is mostly used as an abortive. I'm no dr, but if it were me, I'd start with kudzu and Red Bull to abort, and leave the extra taurine out for now. Keep looking at oxygen.... it works very well for mosr of us.
pain free wishes, nani

Title: Re: new here, what can i do?
Post by Weatherman on Jul 31^st, 2006, 1:18am

Hi Sarah,

Sorry for your pain.

As usual we are all a bit different. All we can do is tell you things that work for us and hope you'll find an approach that works for you. Here's what broke my recent cycle very well. I have yet to try magnesium.

- a 3 week prednisone taper (60mg 1week, 40mg 1 week, 20mg 1week)

- Beta blocker (for my blood pressure) (most use the calcium blocker varapamil but I couldn't use both)

- 6 Nature's Way kudzu per day

- 1000mg Taurine supplement per day

- 9mg melatonin at bed time

- had O-2 and red bull ready to abort but havn't needed them since day 2 of the pred taper.

I'm now a week after the taper and still no ch at all. Looks like the cycle is completely broken. Without this treatment, I would still have at least 3 weeks left in my cycle so it's been a great success for me. The side effects from the prednisone can be a little hairy but to be pain free, I found it well worth it.

Again, different things work for different people. This is just what worked for me. You may find it worth a try.

Good luck....God Bless!

Doug

Title: Re: new here, what can i do?
Post by Ladybug314 on Jul 31^st, 2006, 8:15pm

Hey Sarah,

Sorry your here... I started 7/11 of this year and have tried different suggestions. So far the best bet (FOR ME) Is Verapamil 3x's a day and Imitrex when I know I am going to get the Big One coming in.... I just started Verapamil on Friday and today is Monday But I have gone all day without a headache<<<Lucky Me....I did try Kudzu for a couple weeks.. gave me the (meet the toilet so to speak) and the Melatonin at night (Insomnia last night from 12:30 to 4:30 up at 5:30 to get ready for work. So as I end this Verapamil and Imitrex for the Major pain coming on..
GL and We all need it....... God Bless This site :)

Title: Re: new here, what can i do?
Post by chopmyheadoff on Aug 2^nd, 2006, 8:11am

hi sarahanne,
i was near suicide after being chronic and undiagnosed for 7 years. I couldnt cope with the pain anymore.

Then i was referred to a neurologist who put me on verapamill , since that (2 months ago) i have only had one mild headache which i got rid of instantly with a shot of imitrex.

i forgot what pain free life was like, and im having fun finding back out !!

get to a neuro and get some meds, u dont have to be in this pain. Iv sent u a pm

Title: Re: new here, what can i do?
Post by sarahanne on Aug 2^nd, 2006, 11:53am

again i wanted to thank you all for your help. every night for the past week i've been awakened with at the very least a 6. i've taken to chugging a red bull in order to abort and (for me) it really works. i also hit the natural foods store and i'm taking magnesium, kudzu, taurine and melatonin. last night i woke up before the beast had taken a full hold and chugged a red bull. i completely killed it. i only had pain for about 5 minutes total. this is wonderful. i think it must be the result of a combination of everything. i'm not knocking it, i'm thrilled. my insurance only covers 10 pills a month and i've already taken 5 so i need an alternate way to fight this beast. and i really prefer vitamins and supplements over drugs. thank you all for your help. let's see how today and tonight work out. ~sarah

Title: Re: new here, what can i do?
Post by sarahanne on Aug 14^th, 2006, 12:28am

i'm still here. i have one maxalt melt left and i'm scared to go to sleep.

i did have a few pain free days, which was indescribable. problem is the beast came back worse than ever. during the day it is manageable. i'm able to chug a red bull and keep it down to a 4/5. the night ones are killing me though. last night was the worst ever. an easy 9. i don't say a 10 cuz i think a 10 would kill me. i just don't know what to do to get some sleep. i'm taking 6mg of melatonin a night and still within 2 hours i'm awake, crying and rocking. anyone have any suggestions?

the doctor i used to go to is no longer in my insurance provider. i am calling my hubby's doc tomorrow, but as a new patient i have no idea how long it'll be til i can get in to beg/plead/grovel for oxygen.

i am immensely thankful for all the knowledge i've gained here. i attribute my luck fighting the day attacks to the kudzu, taurine, etc that i learned of from all of you. thanks. now if only i could sleep.

Title: Re: new here, what can i do?
Post by georgej on Aug 14^th, 2006, 1:23am

I'd increase the melatonin to 9 mg. Then to 12 if that didn't work. I'd be a bit more conservative after that. 9 mg is extremely unlikely to do any harm.

In cycle, I regularly take 9 mg melatonin. Out of cycle, I continue to take at least 3 mg. I'm not going to kid you--it's not a miracle cure, but in my experience, it seems to decrease the number of hits--particularly the nighttime hits that occur in REM cycle sleep.

Also, continue the magnesium, but add a calcium supplement.
Calcium seems to increase the effectiveness of the magnesium. Take the supplements every day. They are not abortives, but may act as preventives--most likely your previous experience with the magnesium and red bull aborting a CH was due to the red bull, not the magnesium.

I'm happy to hear you had some PF time. You seem to be episodic. How far into the cycle are you--what number of weeks? You may be on the downslope.

Hang tough. It WILL pass.

Best wishes,

George

Title: Re: new here, what can i do?
Post by sarahanne on Aug 14^th, 2006, 1:47am

thanks, george. right now i'm avoiding sleep because the big ones hit at night. i have a 5 going on right now and i just chugged a red bull. i will not let this one get me. i don't think i'll still be awake when the 3am beast hits though. that's why i'm ok during the day. if i feel it coming, just those few seconds, i can beat it. but sleeping doesn't afford me the time. and i get nailed with pain.
i think once this one goes away i'll take 9mg of melatonin like you suggested. if all else fails i take my last maxalt tonight and BEG for meds somewhere tomorrow.
my first big attack was on the 26th of july i think. the 28th is when i went to the doc. for a week or two before that i was having shadows, some quite intense, that i was equating with regular, obnoxious headaches. now i know better. they were the beginning. my last cycle, two years ago this month, lasted four weeks. i pray i'm almost done. but this time is much worse in intensity and quantity.

thanks a ton. hopefully i can get some real sleep tonight and head to the doc tomorrow.

wishing you no pain, sarah

Title: Re: new here, what can i do?
Post by LeLimey on Aug 14^th, 2006, 5:19am

Good luck with the doctors today Sarah
Let us know how you get on okay?
love
Helen

Title: Re: new here, what can i do?
Post by serendipity on Aug 14^th, 2006, 6:37am

Sarah, be sure to read up on and print out the oxygen info. For a lot of us it works better than any other abortive out there, it works QUICKLY, and it won't turn your liver into swiss cheese.

Good luck today! I'll be thinking about you, and like Helen said, please keep us updated.

Title: Re: new here, what can i do?
Post by maureenv on Aug 14^th, 2006, 10:56am

Hello Sarah

Glad you found something to help. In fear of sounding like a broken record I really strongly suggest you try o2. My last cycle after much needed pushing from others on this board I finally went and tried oxygen, thinking something so simple couldn't possibly work . I ended up crying cause it worked so well and had been suffering for to long needlessly.
I now have a tank with me at all times and it works. There are small ones for traveling so you can feel o.k. to drive yourself anywhere and bigger ones for home. It really made me feel like I was taking my life back and wish the same for you.

Good luck to you,
Maureen