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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Another newbie
        
(Message started by: lemutt23 on Aug 19^th, 2007, 7:16pm)

Title: Another newbie
Post by lemutt23 on Aug 19^th, 2007, 7:16pm

Hi everyone!

After suffering from what I thought was a migraine for nearly 5 weeks, my doctor finally diagnosed me with cluster headaches just 2 weeks ago. I have always suffered from migraines and looking back on my medical history, my doc thinks that I have been suffering from CH for a couple of years now and we just assumed they were bad migraines. How wrong we were. I am just glad that he finally listened to me when I told him that these headaches just didn't feel like my regular migraines. There was something very different with these headaches. After describing the pain, where the pain was, and when I was getting the headaches - TaDa! A diagnosis.

My husband gets frustrated when I have an episode and doesn't fully understand how painful and debilitating the headaches really are. I think he thinks I am being dramatic. I also have a 10 month old daughter and no one understands how difficult it is to care for her when during a cluster.

I have been headache free for 3 weeks now but I am terrified of when the next episode/cluster will come my way. I get nervous when making plans or heading out for the day because I never know when another headache will hit me.

Although I hate that I have had to find this website, I feel fortunate that I came across it. It will be nice to "talk" to others who know what I am going through.

Title: Re: Another newbie
Post by luveemom on Aug 19^th, 2007, 10:47pm

Hello,
Welcome...I am new too....sorry to hear you have CH....but glad you have found this site! The people here are wonderful, and very supportive.....you'll feel like part of the family in no time! I am a Mommy too, I have 4 teenagers and a 5 month old...I am chronic and have been in this cycle now for 5-6 weeks, my pregnancy was pretty good, only 1 or 2 episodes. I know how you feel, my husband has left work many times to come home and help me with the baby because I cannot function lately. We are here to help, if you need to talk just send me a message, pm, or email. You are not alone anymore!
Again Welcome!
Alicia

Title: Re: Another newbie
Post by Ray on Aug 20^th, 2007, 12:01am

Welcome LeMutt:

I'm also sorry that you've had to seek out this corner of the "web" but glad that you've found us. Perhaps you could tell us a little about what tools you are using to control the headaches?

Spend what time you can to read on this site, click the links on the left, there is much to learn about this condition.

I understand the anxiety about going out for fear of another cluster headache (CH). Also the lack of your spouse to truly understand what is going on. My Ex- thought I was jealous of her pregnancy and that I was making this all up.

Your best tactic is to learn all you can about your condition and what tools there are to control it. Oxygen is often the best choice (see the link at left).

There is also a chat room here and several at the OUCH website. Nobody is going to understand you better than we can.

Welcome to the site and I wish you peace and pain free days and nights.

Ray

Title: Re: Another newbie
Post by DennisM1045 on Aug 20^th, 2007, 7:58am

Hi, Welcome to your new home! Many of us have been through the same things you describe. The good news is that you have a diagnosis. People on this site collectively posses and share more info than the typical GP or Neurologist. So read, read and then read some more. Then you can work with your Dr to get your arsenal built up for when the beast returns once more. I hope that isn’t for a long time - if ever.

On the supporter front, I’m very familiar with your husband’s reaction. I get the same from my wife. She vacillates between being very supportive and being very frustrated. I think it is just too much for her to believe I’m in that much pain and there isn’t anything she can do about it. I’m only recently diagnosed too (June) so I’m hopeful she’ll get it eventually. In the mean time join me in drawing strength from the great folks around here. Also, see if you can get him to come here to this site. Get him to read a copy of the colleague letter on the OUCH site: http://www.ouch-us.org/chgeneral/colleagueletter.htm.

The fear of getting hit again can really take the shine off the pain free time we have. Don’t let the beast stop you from living your life. Enjoy your 10 month old and your husband. Fear can be paralyzing if you let it. This mind set is probably the most important thing I’ve learned from this site. It gives you hope and puts your pain in perspective. CH isn’t terminal. The pain does go away eventually.

Wishing you many PFDAN.

-Dennis-

Title: Re: Another newbie
Post by Guiseppi on Aug 20^th, 2007, 10:32am

Welcome to the board...and what Ray said! Let us know what your regimen is, what you use for a preventative when you're on cycle, what you use when a headache starts, how you use it. Hundreds of years worth of experience on this board, maybe we can make some suggestions.

The fact that you're still "afraid" of a cycle starting tells me you probably don't have oxygen yet. Read the link on the left, then DEMAND it from youtr doctor. He'll say no. Print out all of the oxygen info and demand it again, if he still says no get a new doctor. It has almost no side effects, is cheap, and is incredibly effective. I can abort a headache in less then 10 minutes, sometimes in as little as 6 minutes, just by firing off the oxygen.

So when you get a minute tell us a bit about yourself, and if you can, talk hubby into joining the board and hanging out in the supporters corner. It will help him a lot in the understanding department.

Guiseppi

Title: Re: Another newbie
Post by lemutt23 on Aug 20^th, 2007, 11:21am

Thank you for the welcome wishes.

I wish that I could say that we have a great plan in place for when my headache starts, but we don't. My doctor has been very up front with me and told me that he doesn't know too much about CH and so he is learning as he goes. ::) We are in the process of getting me referred to a headache clinic in Boston to get my headaches better under control.

So right now, I have a supply of imitrex (injections, nasal spray, and pill) and take it when my headache starts and hope that it does something to help. Someone mentioned oxygen - my doctor did give me oxygen in his office a few weeks ago to see if it helped at all. It worked well and told me that if I had another really bad attack (he doesn't understand that they are all bad!) to come in and he would give me oxygen again. He is a great doctor, but like I said - not too familiar with CH. I had to beg him to write me the script for imitrex after I did some research of my own and discovered that this was a med that worked for a lot of sufferers.

Again, thanks for the welcome. :)

~Meghan

Title: Re: Another newbie
Post by DennisM1045 on Aug 20^th, 2007, 12:42pm

Meghan, check your PMs. I use a Neurologist in Lawrence MA. I sent you his contact info.

edited -- I also sent an e-mail to OUCH requesting that he be added to their Dr list. That list can be found here: http://www.ouch-us.org/chgeneral/doctors.htm

-Dennis-

Title: Re: Another newbie
Post by southwalessunshine on Aug 21^st, 2007, 7:55am

Your experience sounds so much like my own experience. I was diagnosed withmigraine from a young age but it got worse when I was around 18, and only got diagnosed with CH a few months ago. I too was coping with mis diagnosis with young kids and very often was left alone for months with them as my husband at the time was military and posted away and I was in Germany, miles away from family. So I understand how life becomes one long blur of pain, feeds and anxiety. However 15 yrs later i understand the condition alot better and thats down to this site. I had tried most of the meds on offer by the doc for my "migraines" already and am on Sumatriptan/imitrex tabs and injection now. But it wasn't enough. This board made me realise I had to demand 02 from the doc and now I have it. Although I got the wrong prescription forst, I finally got it all correctand set up yesterday, and after 9 weeks solid attacks I was ready to go for it.......and I suddenly was pain free! Don't know whether to be happy or sad about that one? Anyway, I suggest you go ask for 02 from your doc. If you're one of the lucky one's you can suck on that and be pain free really quickly and it shouldn't interfere with how you care for your child. I'm pretty sure people will be along soon with more in depth info about 02 (as I'm still an 02 virgin right now) and maybe other suggestions.
I felt the same happiness as you did over finding this site but it was overshadowed by sadness too. The reality of all of our situations is, we were dealt a bad hand, but with a place like this to go to, that hand will start to look a little better. I hope you find your answers.

Title: Re: Another newbie
Post by Callico on Aug 22^nd, 2007, 12:28pm

Welcome aboard. Sorry you are here!

You have a GREAT Dr!!! You don't realize how many of us deal with Drs that "know" it all, and won't take any input from us. If he is willing to admit that he needs to learn more about CH you can take info from here and share it with him. Also, refer him to this site and to O.U.C.H.

Oxygen is an excellent abortive for most of us, iIF used properly. Otherwise it does nothing. RedBull or one of the other energy drinks with Taurene works well for me if I slam it down without stoppping at the first sign of an attack.

Look into Kudzu as a preventative. You will find info on it on the Meds and Treatment page of this site. It has worked wonders for me.

Dennis gave you an excellent link for your husband, and for your friends and family as well. Print it out and share it with them. THat is not to gain pity, but understanding. Then, get your husband to the site, and have him become a part of us. We have quite a number of supporters on here that are invaluable to the rest of us, and we can use one more, plus hHE needs the support from us until he gets a handle on what is going on.

Jerry