My name is Jessica, I'm 28 yrs. old, and have had clusters since I was 18. When I experienced my first one, I thought it was just a really bad migraine. I'd have them on and off months at a time. Lasting from 15-25 minutes. Years went by, still thinking I had the worse case headaches ever! I was visiting my mom and brother in Denver Co, when one evening I was awaken by a "headache". I cant help but to scream, kick my legs, and cry my eyes out. It woke my mom and brother up, and it worried them a lot! They've never seen someone that had a headache and would be in that much pain. My brother ended up taking me to the hospital. Once I saw a doctor, I explained to him my symptoms...and I was diagnosed with clusters in 2006. That was the first time I ever heard of clusters. I was prescribed Imitrex injections that was the best thing since sliced bread. The moment a cluster would wake me up, I'd inject the imitrex...but I would suffer from a few annoying side affects. After that episode was over, I did all the research I could on this disease. Finding out that it only affects .1% of the population, and most are men...I thought, WOW, lucky me. Well, it's been 2 whole years since I had a cluster until the beginning of December. I remember the night. I was awaken by a little pain to the left side of my head...starting at my eyeball. I sat up and thought, OMG, it's happening again. I really assumed that I was blessed and would never have one again...since it had been 2 years. Since that first one I've had them EVERYDAY, atleast 4 times a night! I've gone and seen a doctor twice and got meds. I bought the generic imitrex nasal spray, which actually made my headaches worse. Then I got hydrocodone that I would take right before I'd fall asleep to see if that would work, but it hasnt. I ended up getting Imitrex nasal spray, and that's not working either...although it didnt make my headaches worse like the generic. Here's my problem. When I tell someone I have cluster headaches....all they here is "headache" and dont think twice about it. I dont think my boyfriend understands how painful this is for me. He already thinks I'm a drama queen. For the last month and a half, EVERYNIGHT, I wake up...sit myself up in bed...hold the left side of my head, rock back and forth, and cry my eyes out for about 15 minutes. To see my boyfriend laying next to me with his eyes closed, pretending to be asleep...which is IMPOSSIBLE with how loud I am...kills me inside. I feel like he doesnt care. He's been around me while having clusters for 7 years now. I dont think he understands how horrible I feel for those few minutes. I'm exhausted, cant get ANY sleep, stay up for hours...SCARED to lay my head down, I feel like taking my eye out with my bare hands, and bashing my head against the wall...while pulling out all my hair. These headaches are getting the best of me, and I think its even ruining our relationship. I ask him to comfort me while I'm having an episode...but he just excuses himself by saying...it's not going to help. I cant do it anymore...I gave up on going to the doctors, I'm giving up on medication...I just dont have the strength. I'm sooo weak. I pray every night that this will all go away soon! I'm sooooooooooooo happy that I found this site! I dont think many people understand what we go through, unless you've experienced what we experience. Hopefully this support group will help me get through the tough times!  God bless you all!

---

Have a read here: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

I'm sorry you had to seek us out.....but I'm glad you found us. Welcome!

Ok, Jessica... you need to find a good neuro and get on a prevent.

O2 O2 O2... That's the abort that works for about 70% of us. Used properly it will abort a CH in a few minutes and it beats meds.

Try chuging a Red Bull or another energy drink at the first sign of a hit. That helps a lot of us.

Melatonin at night (6-15mg) before bed will a lot of the time get you the sleep you need at night. It helps you thru the REM sleep where the CH hits. It's worked for ME for years. Helps me get rested up for the daytime hits.

But finding a doc who you can work with is essential to dealing with these headaches.

As to the boyfriend... wish I could give you a magic cure for that, but... either he will come around (you might try bringing him to this site and letting him talk to some of our supporters - who are really wonderful) or he won't. Except for my 8 year old grandson, my family is about like your boyfriend - "oh Mom has one of her "headaches" AGAIN!" It's not easy, but eventually you get used to it.  :(

But now you've got US here for support and we're here 24/7, so let us know what's going on and what we can do to help you. We're really a good bunch of folks.

Hugs BD :-*

Oh thank you soooo much! I'm willing to try whatever...I dont have health insurance...so all these doctor visits and meds have been out of pocket...I've spend A LOT and it's been a waste. Not really motivating you know?! I just cant get over my boyfriend...after the cluster this morning, we got into a HUGE fight! I called him heartless...maybe it's just a mix of anger, and frustration...IDK, I hope that I get use to being ignored when I feel like I'm dying. I will look into your suggestions! Thanks again!

1) Oxygen

2) Send your friend here to read what other people say

3) Stay away from the Hydrocodone

Hey Jessica Marie,

Sorry the imitrex nasal hasn't worked. The imitrex injections you had success with before are so expensive, I know, but they are generally regarded as the most effective form of imitrex. Read this info please because it will cut your   expense for injections at least in half (!!) and reduce side effect risk too: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Using O2 to abort attacks and having some injections on hand as a backup just in case can be a good way to go.

So yeah, if you really want to experience as little suffering as possible you need to dedicate yourself to learning as much as possible right here and then putting your plan of action into place. Don't count on EVER finding a doctor who you can just entirely trust your care to and go along with whatever he/she says., because that's just one big prescription for more very painful times.

You're right of course that naming this condition "headache" is a very misleading mischaracterization. It's basic fundamental human nature though  to become desensitized to the suffering of others when seeing it over and over year after year time after time. Thats just normal. IMO you'd be better off focusing your attention on counterattacking this beast in the most effective ways possible (there are lots) and away from seeking sympathy from your boyfriend or anyone else.

One more thing, if you haven't found this out the hard way already: Don't drink alcohol while in a CH episode!! For most of us it triggers a massive hit.

Hi Jessica, welcome to the club that no one wants to belong to.  But since we are all here together, welcome.  I tend to be here during my cycles to read up on stuff, but the more you read before your cycles the better off you will be.   I am a daytime episodic sufferer and the judicious use of caffeine has helped over the years.  Probably wouldn't work well at night.  I pop a nodoz or a couple cups of coffee or a big coke when I feel the first tickle of my cluster friend and often that alone can kill the onset.  Sometimes it just shows up several hours later.  Sometimes no help.  Different things seem to work for different people and there are some great tips here on this website.  I have never dabbled in the pharmecueticals although I have never been chronic. 

I have had good success at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE if you haven't checked their website, take a look.  Seriously check it out.

As for the unsympathetic mate and friends? welcome to that club too.  I had the best luck when I sent my people the sample letters from this website.  For my close relations, I have sat down with them and explained it, while not in my cycle, that way there is not a lot of emotion or craziness.  Make sure it is a time that they are ready to listen and in a good mood. 

"oh you get migraines? I get those.  Just take aspirin, aren't you light sensitive?"  I think we have all heard that a million times.  I now start every cluster discussion with "it's not a migraine" and people still ask me if it is a migraine.  It's kind of funny (sort of).

Good luck and hang in there.  Get reading and try stuff out.

Shaggy

Oxygen works.

        Potter

If you need to see a doc and have no insurance and depending on your income, you could try the St. Louis University medical school.  Almost all medical schools run clinics based on income.  As to meds, the same applies, if yoru income isn't that high, you may qualify through certain programs.

And I'll second what the others have said O2 works.

Hi Jessica,

Definitely have a look at the 02 info to the left hand side of your screen, it has been a life saver for many of us. Some on the board without medical insurance use welders oxygen as a cheaper alternative. I have never tried this myself so I couldn't give you any sound advice that would help. Feel free to ask more questions and we'll do our best to answer....



Lefty...!

Hi Jessica,

I started getting the CHs around 18 too.  Same side of the head as well.   I went untreated for about 8 years.  I've found tremendous relief following the clusterbusters treatment.  I'm currently in cycle, and it's been the mildest one I've experienced.  I also slam 2 Red Bulls at any twinge of a 'headache', and it usually knocks it back. 

Your boyfriend sounds like a callous jerk.  There's a good chance you're going to be getting cluster hits for  the foreseeable future, and you deserve a strong supporter. 

Welcome Jessica,

I have a couple of suggestions. 

1. O2 for abortives.
2. See Clusterbusters for alternative preventative therapies.
3. If you're not into the Clusterbuster rout, then look into Kudzu.
NOTE: All of these three are affordable requiring no health insurance.

4. Give your man an option to support you or leave.  I gave my wife those options many years ago before we were married.  Luckily for me, she is a supporter.

Best of luck and ask us anything.

Cheers,
Chad

My bf saw me have an attack for the first time last week. I always assumed before that he completely didn't get that my headaches weren't just any old headaches that I was making a big fuss about. Anyway, ever since he saw me screaming in pain for half an hour, he has researched everything even more than I have to try to help me. And when I can't leave the house, he has been bringing me supplies on his way to and from work and being very supportive. One thing I do have to say, is that you need supportive people around you when you suffer from CH. Its very important.

Jessica,

Check out the letter in this post:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

I have used it to help new bosses understand what I will be dealing with when a cycle starts, and what I need from them, which is mostly understanding and a little flexibility during a cycle.  I copied it and added a few personal remarks in the letter to emphasize or de-emphasize some of the points in the letter, as it applies to me.  In all cases the letter hit home, and there were no challenges to my behavior or work performance from them, during the cycle.  They cared, and that's what I needed.

I've also needed understanding and support from housemates, when I was sharing a summer rental and a cycle hit.  Essentially - "When an attack hits, you'll see me going a bit crazy.  Leave me alone, please.  There is little/nothing you can do to help, and it will likely frighten you to watch.  If you can help, I'll let you know."

But bosses and housemates aren't my partner.

In a closer personal relationship, you might expect more.  It's a personal thing, and you know what you want/need in terms of support.  Many of us just want to be left alone during an attack, but it sure is comforting to have the overall support and understanding between attacks.  Although I'm skeptical others can truly understand a CH experience, many try and some do exhibit a clear realization that this is not "just a headache".

As other members suggested, the Supporters here can help your Supporter, if he is willing to at least listen.

You will likely find that nobody, outside these Boards, understands quite what you're dealing with.  There is a certain sense of isolation in that, which takes a while to accept, and 'shake off' the remarks and attitudes that just "don't get it".   Some of my closest friends still "don't get it", and they remain my closest friends, because I love them, and I cannot blame them for not getting it - CH is just too weird and too rare to find general acceptance and understanding out there.  You will find it here.  I did.  Maybe your boyfriend will too.

This is no act for a drama queen.

Ditto on all the advice on treatment.  There are ways to manage this.  O2 + verapamil is working for me (I learned it here), but your mileage may vary.

Best of luck,
Fox

Another thought...  Do you think your boyfriend might be as scared as you are (or close)?  Feeling helpless like you do?  Many men won't accept such fear and helplessness, and denial is such an easy cop-out. (Not that it's fair play.)

Not defending, just sayin'

As much as we want help with CH, it is hard to define practically, what exactly will help.  Understanding & compassion is a good start.

Again, the Supporters here can probably help both of you.  I'm single, so what do I know?

Fox

Quote:

Here's my problem. When I tell someone I have cluster headaches....all they here is "headache"

Except for around here, I stopped saying "cluster headaches" entirely.  If someone asks, I say I have a rare neurological condition that causes excruciating pain and leave it at that.  I am sorry that your BF is so unsupportive and thinks you are a drama queen.  Personally...I'd find another BF.

Linda

Check your PM's, Jessica.   


Welcome to CH.com.

Jeannie

Oxygen works very good most of the time, Imitrex for when O2 doesn't. Also try chugging down a Monster energy drink, it helps. Have your boy friend do some reading on this site and he might be more supportive when you need him. I know the feeling when my wife is sleeping beside me and I'm dam near screaming. She never wakes up.... Not too fun.

All of you are awesome, and I thank you all for your comments, suggestions, and support! I'm sooooooo happy to of found this site and see all the caring people that UNDERSTAND what it's like to have CH's. I think my cycle is coming to end. Instead of having 4 everynight, I'm starting to have only 2 every other night for the last week!  :D I havent gotten 02 YET, that's next on the list! I'm a huge procrastinator...Thanks again everyone!

I think all the suggestion you've had are good. I would really sit down with your boyfriend and talk to him when you are not having a cluster. My husband can't stand the fact that I am in pain and that there is nothing he can do- it doesn't mean he's not sympathetic. Also I would get him to look at some of the video so he can see that you aren't the only one out there and a drama queen. If none of these help him see the light you need to concentrate on you, and either except the fact that he's an uncaring ass or move on.

Suggestion on the boyfriend front. Most of us have a place we go to "ride out" our hits. I can't stand to expose my wife to my clusters. She knows about them and sees the periphery but I pretty much go and hide at the first sign of a hit. I would never even dream of sitting in bed in the middle of the night to make her hear me rock and moan and cry.

So, unless you live in a one room apartment, finding a place to remove yourself and ride out the storm is better for you and the relationship. In each of the houses we've lived in I always had a go to area that I felt was my headache spot. Sometimes it was the middle of the living room rug in the middle of the night and I'd wake up in a wrecked twist on the rug. One house had a huge closet that I loved to sit in because it was pitch dark.

Supporters deal with things different ways as do sufferers. Your boyfriend knows you're going through hell. Your making him go through each headache right next to him isn't right and (again, unless you guys live in one room) does make you a bit of drama queen.

So give him a break and you may also find that the privacy is good for you too. I find that it allows me to not add the stress of worrying about what my wife must be thinking or worrying about - which just adds to the stress that is in your brain. Ease up - if he's been through 7 years of this it isn't going to cluster headaches that freaks him out.

Get yourself some O2, set it up in a quiet place in your home and go to it when you get hit.

Scott

seasonalboomer wrote on Jan 26^th, 2010 at 6:41am:

... finding a place to remove yourself and ride out the storm is better

While partners can react differently, I'm in a bit of agreement.

Memory still of an oncoming hit and caught without any meds during simple pleasant conversation in the kitchen, I simply sat there waiting if maybe it would not get bad in a wrong decision eliciting her concern.  Staggering to a different position kneeling with head on a chair in the girl's living room I managed to mumble assembling a baggy of ice to her for what began to exceed bareable, but been there before many times.  Subsiding to maybe a six or seven in what seemed nearly an hour, I chanced a drive home for oxygen and that was that.

For me it was over, just another hard lesson learned and then satisfying pf time.  Not so for her; a constant inwardly held silence of pacing fret during the hit's elapsing time and a related memory since made me feel she suffered lastingly more.

Since, reassuring with an elsewhere departing "I'll be ok" seems alright.

Quote:

Your making him go through each headache right next to him isn't right and  (again, unless you guys live in one room) does make you a bit of drama queen.

Before finding this site, I would have never let Randy see me get hit. For 17 years he had no idea what I went through. I was afraid that if he did he would think, "It couldn't be THAT bad."
I greatly under estimated him.

  I still prefer to be alone during my visits from the beast. But, for those rare times when I feel the need for him to just be near me, he is AWAYS ready to help me in any way.  That's what it is to be in love. 

Jeannie

Omg! It's been 2 years ...and they're back!!  :'( I hate it sooooo much!! I can't take it!

We're here for ya, Jess. Always will be.

Got an ice-pack? Red Bull?

You know we care.

Yes, and I appreciate it so much. Thankful w/ finding this place. Never tried the ice pack or red bull. I'll give it a shot. I can't believe it...2 years w/ not one cluster! Ugh, but now they're back!

Happend to me the same way...years of peace then they came back harder then ever before.   A few weeks and I seem to be through it.  I pray it is another two years before it comes back.  Did you ever try the O2?  I can't tell what really worked for me.  I mixed some triptans then started on redbull, the vitamins and O2 all at the same time.  But the cycle ended quickly afterwards.  I was exhasted for a week even after they cleared.

Post what is and isn't working.

Best of luck Jess!
Mark