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        Cluster Headache Help and Support >> Cluster Headache Specific >> Depressed
        
(Message started by: AfraidOfTheDark on Apr 16^th, 2006, 6:20pm)

Title: Depressed
Post by AfraidOfTheDark on Apr 16^th, 2006, 6:20pm

I'm finding myself sinking into a depression. Whenever I'd get a new cycle, it was always one CH a night, and I'd always be able to abort it with Prednisone. This cycle started early March and two packs of Prednisone didn't stop it. I've also been hit with anywhere between one CH to 4-5 CH a day. I haven't gone back to the doc b/c I have no insurance and I feel too guilty about the bills when hubby is the only one working.

Last night was nearly rock bottom. I had an attack at 2am and 4 am, they were bad but I got through it, they lasted the usual 30 minutes. Then I had another at 6am that lasted 1 1/2 hours. I had worked myself into hysteria and hyperventilated, the CH died just at that point. I was truly ready to lose it.

The thing that bothers me is my husband doesn't care. He tells me to go to the doctor in such a way that makes me feel guilty. "I guess I'll have to get the money out of Christmas savings..." I want him to say he's seen the pain I go through and I should do what I need to do, he'll take care of it somehow. When I get up in the mornings and I need a shoulder to lean on and just talk about it, I want him to act like he cares, not like he can't be bothered. When he hears me suffering in the middle of the attack some night, I want him to occasionally not pretend that he doesn't hear, I want him to just remind me that he's there for me.

Maybe I just expect too much. Some people just don't realize that sometimes the hardest part of dealing with CH is just feeling so damn alone. I am not used to dealing with this much pain in a cycle, I just don't know how much more I can take. :-[

Title: Re: Depressed
Post by AussieBrian on Apr 16^th, 2006, 6:43pm

Really sorry to hear that and know just how you feel. Wouldn't wish this on anyone but if once, just once, they were to experience a serious hit then the world would be a different place.

Title: Re: Depressed
Post by D_Robinson on Apr 16^th, 2006, 6:56pm

You are not alone. There are a bunch of people here to talk to.

I know exactly how you feel actaully. This time for me has been pretty much the same emotionally. I really try to be easy on my wife thru these sleeping in another room since I crawl the walls while I wait for the meds to work, and well when my head hurts with a ch I do not want to be held I want to to be left alone to flinch walk talk to myself, tell myself to be stronger then what is going on around me whatever it takes to get thru the pain, but in the morning yes I would like a hug, and like you it was not there. I got a lot here where it be someone liking a joke I posted here or being able to relate to someone else here or reading how someone was strong going thru a ch at work.

Meds wise, my view I have had good insurance and bad insurance, and well pain is pain, get the meds you need to get thru it. This time around my first prescrip was 500 bucks which 100 bucks was my decutable and then insurace then covered 50% of the rest and my wife just went bug nuts over the whole deal. The last time we had not medication coverage. Really made no sense to me till I thought about this.

I think her stress level is high since there is nothing she can do to help. Every night I go to sleep alone awaiting pain and there is nothing she can do about it. Now she does not understand the pain since she has only seen it, and has not gone thru it. My wife did not want to discuss the headaches or what I was going thru at all, not in the morning or evening. She would just avoid me. Finally last week she broke down luckily for me. I like you I bet tried everything.

Christmas is a long way off, get yourself healthy now, and well Christmas will take care of itself.

and if you need to bend my ear feel free.

David

Title: Re: Depressed
Post by marlinsfan on Apr 16^th, 2006, 7:19pm

Hi Dark, welcome home. You have a lot of reading to do if you're aborting with Prednisone. That's used to knock the cycle off track, but it won't abort a headache.

Here's a link to a document that has lots of info on meds:

http://www.brightok.net/~mnjday/chtherapy.pdf

I keep my nighttime hits at bay by taking Melatonin. 9 mg 30 mins before bedtime does a lot of good to me. You can buy it cheap at the supermarket or walgreens, in the vitamin section.

Also, coffee is a good abortive for many here. Actually, caffeine. Strong coffee, mountain dew, red bull are good to take as soon as you feel the headache coming on.

If you are able to get it, Oxygen would be your best bet.

PF wishes.

Title: Re: Depressed
Post by unsolved1 on Apr 16^th, 2006, 7:46pm

Maybe you need a new doctor AND a new hubby !

You're never alone!

Goodluck!
UNsolved

Title: Re: Depressed
Post by chewy on Apr 16^th, 2006, 9:07pm

Welder's O2 might be your answer.

Cheap and effective.

Title: Re: Depressed
Post by nani on Apr 16^th, 2006, 10:54pm

You'll fight a better fight if you turn your depression into action. Welders oxygen...look at the oxygen info link on the left. Have a look at kudzu. Everything you ever wanted to know about it is contained in this thread (and the threads linked in it):
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1110584362
You can look over at www.clusterbusters.com. Get this depression dealt with though. It's only going to make things worse. I understand it, but I've learned that I can't give in to it. Hang in there, OK? You've got us now, and we're a pretty good support system. :)
pain free wishes, nani

Title: Re: Depressed
Post by GuitarBill on Apr 17^th, 2006, 3:11am

I just want to let you know you are never alone. About your hubby...it might not be he doesn't completely care but for sure he does NOT understand. NO ONE understands this pain except us here on this board. And I think it frustrates the people in our lives that don't understand the agony. When I was a kid, my parents had no idea the severity of the pain, and it angered them because of the lack of info on CH. I do believe there is a remedy for you, but it always seems like it takes forever to find (I know it did me..)
Please understand....we all are going through the same hell...and it's very easy to get depressed. But in my opinion, anyone who lives with these things are stronger than any human being on earth. Please keep us posted!!!!

Title: Re: Depressed
Post by alchemy on Apr 17^th, 2006, 3:29am

you are not alone here. we all know just how you feel. unfortunately our loved ones are left to try and deal with these the best they know how. it's hard for them because they don't know what it's like but can see what we go through, this can breed frustration on they're part. your husband may be feeling this and what sems like a cold reaction from him is actually his inability to fix the problem. see the doctor the rest will work out. don't forget were always here. jim

Title: Re: Depressed
Post by Bigsouth1999 on Apr 17^th, 2006, 12:00pm

Hang in there, dark. Your with people who understand what your going through. There's a lot of info on this sight that can also help you hubby understnd what your going through. I suggest printing it out and maybe slipping it into his lunch box or putting it where he can see it and has time to read it. It may help him understand the pain. You shouldn't have to deal with pain just because your without insurance. If it were me, I'd do what ever I have to do. But NEVER feel bad about making yourself feel better! After all, with out you, where would your hubby be?

I truly hope this cycle ends for you soon. My family and I will do our best to pray for you.

Title: Re: Depressed
Post by superhawk2300 on Apr 17^th, 2006, 1:44pm

Hi,

I can relate but in the opposite way. My wife is very loving and understanding - to the point of being a additional pain - I do not want people asking me questions during an attack - even if it is to see if I am OK.

I offer this suggestion, find some time when your hubby is ready to listen and try to explain what you are feeling, about the headaches, going to the doctor, and how he reacts - in the specifics. Before you dismiss the idea please read all the post.

I am not being sympothetic to him, rather trying to suggest something that might get postive results for you.

Most people have no way of relating to our condition - everyone in the world has felt terrible pain at times, but no one can know how you truely feel - he cannot be BLAMED for he behavior as he no way of understanding what you are going through or what he is doing that you do not like. (are you sure he doesn't care? maybe he feels gulity or blamed or bad or helpless, or worthless about your attacks? Ever ask him how he feels about it?)

Most people assume things about partners in everyday life, period. Throw in the hell of a CH with its level of pain and the rareness of it and the shitty misnomer of a name (head "ache" my ass) and you are going through something very normal I think, assuming by both partners.

I find when I:

1) am clear in how I feel

2) and am clear with what I want

3) and clean with my actions

things workout best.

Clearly tell him how you feel in a way you think he can relate to (about the headaches - hitting your thumb with a hammer but in the head or whatever fits for you) and follow with how you feel about how he treats the situation (I feel......)

Figure out EXACTLY what you want. Lots of times people are sure they don't want something they feel they are getting (i.e. treated bad) but then when they are asked what they DO want I am surprised at how often they answer "Well, I don't know" or something very vauge and shoot the whole process down themselves. Clearly state what you want (not "I want you to treat me better - "better" is an opinion - how will he know if you get it? Tell him what it looks like "I want you to hold my hand after my headache is gone" or I want to you ask me how I am after an attack". Then he will know exactly what you want him to do and you are giving him the change to succeed in getting what you want.

Resond accordingly. You yourself need to take responsisbility for being clean and clear and getting what you want. Help him help you. If you can't get what you want there consider the all of the alternatives and start the process over until you get what you need.

Take the first risk and give him something authentic and he may follow suit. Yell and make him feel guilty (which he may already feel) and he will get more defensive.

Just my 2 cents - its not all roses but I shared with the intent of maybe giving you something to change your situation for the better.

Hope you feel better and if you need anything specific feel free to let me know. I'm going through a cycle that fits your description and I used to fit your other description as well. I usually do 4-6 killed by prednisone and after 2 doses I'm into week 15.

Please be well and ring if you need anything.

Jamey

Title: Re: Depressed
Post by AfraidOfTheDark on Apr 17^th, 2006, 2:22pm

Wow, many heartfelt responses! It means a lot to be in a place where so many others can instantly understand what it's like to be a clusterhead. I think it's like some of you said, it's really impossible for someone to understand if they haven't experienced it before. The term 'cluster headache' sounds way too simple. What's the first thing that comes to mind when you hear the word 'headache'? Tylenol. Pop some Tylenol and you'll be fine. Some think you're making a big fuss over nothing. You need to spend hundreds of $ on doctor visits and meds over a headache? O...k.

I'm feeling quite a bit better today. Yesterday I was sick all day because I'd gotten so worked up over the three previous attacks. I took some Tylenol PM and went to bed. By some miracle, I didn't have an attack, and I slept like a baby. It was very much what I needed.

You guys are probably right. My husband probably cares more than he lets on, he just doesn't know how to share his thoughts. He's never been one to really sympathize. Of course I don't want him in my face during an attack, but at the same time I don't want him snoring and completely oblivious to my pain. Yeah yeah, I can't have it both ways. Hey, who says we're capable of being rational during and immediately after an attack?? ;;D

I made an appointment for tomorrow morning. I hope like hell this wont cost an arm and a leg. It's already a burden as it is. I'm nervous about exploring other meds and remedies, all I'd ever needed was Prednisone.

Thanks again to each of you for sharing your thoughts. It truly helps to know I'm not the only one.

PF wishes,
Mandy

Title: Re: Depressed
Post by superhawk2300 on Apr 17^th, 2006, 3:24pm

Mandy,

Another tool is to find a Doc that is willing to give you some samples of meds. Mine does that when I am out and my insurance say "no more".

This helps me lots when I am "out of insurance" and would help your costs too.

Also what meds are you using as abortives? Most are big time expensive - it appears users here are able to help sometimes and the welding O2 is something I am going to do very soon myself and seems to be a very affordable treatment - look into that.

Glad you got some sleep! That alone helps me big time!

Jamey

Title: Re: Depressed
Post by AfraidOfTheDark on Apr 17^th, 2006, 3:47pm

Jamey, I've never used anything other than Prednisone. The only other thing I have tried is chugging water at the onset of a hit, but it seems to have mixed results. Sometimes it works well by dulling the CH to "bearable" immediately, and other times it seems to not work at all.

I will definitely ask the doctor about samples, it would surely help me. We have a family of 5 on one income, so money is tight. I posted on the meds section about what meds to ask about and what the out of pocket costs may be. (I'm kinda scared about trying O2) I'm concerned about the costs of new drugs as the Prednisone only cost $16. Strange how the Prednisone had always aborted the cycle before, I've just now read that it's only supposed to act as a transitional therapy, and used in conjunction with something like Verapamil.

Yeah, the uninterrupted sleep was wonderful. Hope it was enough because my shadows are telling me I wont be so lucky tonight! ::)

Title: Re: Depressed
Post by thomas on Apr 17^th, 2006, 4:14pm

Try some melatonin before bed, it's really cheap and eliminates the night time hits for some people.

Title: Re: Depressed
Post by superhawk2300 on Apr 17^th, 2006, 8:20pm

Mandy - ask for some triptan samples ASAP. Those will pay for themselves, and if you had to pay for them the cost would be more than the visit cost - never leave the doctor empty handed, especially paying out of pocket!

Have you shared your money matters with your doc. My doc, and it sounds like lots of others, will give samples to people WITH insurance because the stuff is so expensive. My insurance, which is pretty damn good, covers 6 pills a month or Relpax, 6 of Imitrex, and 9 of Frova.

Find a triptan you like by asking for samples of a couple each - if he gives them up that will be enough for at least 6 or so nights. As I was told - do NOT mix them. Wait 24 hours before switching to another one.

Try the O2 - most people report great results. It works pretty good for me, but it sounds like less than most people and I still LOVE it - and it is really cheap after the inital cost. I have not setup a home rig yet (my insurance is better with the 02 than the pills and I have a small tank left) - Ask Jonny about the 02 - he is the man and he will definatly help you get setup and cheap!

Relpax works the best for me, then Imitrex but I get the Frova first because it has9 pills to a box, not 6 - and seems to stay in the system a bit longer and helps with the morning after shadows as well.

If your doc doesn't give you decent amount of samples find another one. Hell maybe find a new doc every month as long as they give you samples :)

Once you know what works the people may be able to help you out. You are NEVER alone here!

Mmmmmmmmm........Samples..............

Title: Re: Depressed
Post by GuitarBill on Apr 18^th, 2006, 1:51am

Hi again...just wanted to say that you should give O2 a try for sure! I love it for 2 reasons:

1. It works and works fast.
2. 0 side effects.

And thanks to this site I found a few different cost effective options as my budget sucks. But when it comes down to it of course, the important meds are the preventive. With a preventive that doesn't work well, you can suck down as much O2 as you want...and ten minutes later you're immobilized again. I've sucked down entire tanks on many occasions! I used to take Prednisone....but I regretted it in the longrun, especially when it stopped working. I have been taking Verapamil for 5 years and it has worked better than anything else. I'm back in pain, but I've been using the Kudzu (which I found thanks to this site again!!!!) root along with Verap and I have had great results.
The problem we face is finding the right abortive and preventive meds that work well and everyone's different. Different results, side effects, etc. Explore every avenue you can...it's worth being away from pain!!!!!

Title: Re: Depressed
Post by TxBasslady on Apr 18^th, 2006, 3:28am

on 04/16/06 at 18:20:55, AfraidOfTheDark wrote:

I'm finding myself sinking into a depression. I just don't know how much more I can take.

Mandy,

The truth is..you can take alot more than you already have. It's survival.

You're a classic clusterhead....we've all had these same feelings at some point. The best thing is that we're here....and you never have to feel alone again. When you feel the loneliness and the depression setting in...come here, and say what you feel.

I felt all alone until I joined this board. I never in my life needed support till CH tried to take over my life. In sheer desperation I searched for answers to my pain. I found this forum, and my life changed dramatically.

My husband tried to help me thru the bad times....but I needed the help and experiences of folks here. My life was turned upside down.....and I could not have made it without the sufferers and supporters here. My husband traveled and was gone from home for a month or two at a time. In his absence, I spent many hours here....and I realized that I could deal with CH and the pain without him. At some point in the last 8 or 9 months, he expressed how hurt he was that I seemed to not need him in order to deal with the pain. I didn't apologize....but I told him that I had to deal with my own pain in whatever way I felt. He doesn't come home very often anymore.

Sometimes we have to accept things we would rather not. CH is one of those things. We can't stop it and for me, the more I try to stop it....the worse it gets. Every time I changed meds....or sleep patterns...it got worse. Prednisone worked for me twice. First time I got 197 pf days. Second time was only 42 days. I never tried it again because the hits were much worse after taking the Pred. I took the Kudzu for 10 months and then my doc gave me 02. Things have been really good for me since. The CH breaks thru sometimes..but I've had more pf time since being on the 02 than I ever had with meds (except the Pred).

Maybe you can find a CH sufferer close to where you live. It's a life changing experience to be in the company of another who suffers. I can't describe the feeling....but it's the best cure-all.

I sure hope things go well at the doc today. Let us know...

BTW...I love the screen name you chose....it so much reflects the true feelings of one who suffers with CH.

PF vibes,

Jean

Title: Re: Depressed
Post by BarbaraD on Apr 18^th, 2006, 7:36am

Mandy,

Try some Black Coffee at the onset of CH (before it gets up past a Kip 5). this works for me most of the time. That along with some O2 saves on meds. Red Bull also is great for aborting at a low level pain to keep from going up on the scale.

I'm with everyone else on the O2. It has 0 side effects an works for so many of us if used right. Check the usage on the left and be sure to use it right.

Melatonin at night to help get thru the REM sleep will get you past the exhaustion part and give you the strength to get thru the days.

Finding the RIGHT doctor is essential. You need one who you can relate to and who can relate to you. Also one who gives samples. My neuro always loads me up with a WalMart sack full of samples on every visit (I don't have insurance).

And look at the light at the end of the tunnel -- this cycle will end.. some of us don't have that to look forward to (I'm chronic and haven't been out of cycle since 97), so you're not as bad off as you could be.

As for the depression - stay around here - we'll do what we can for that. I don't know of a person on this board who hasn't been there. But just knowing you're not alone should help some. We're here and we DO understand.

Hugs BD

Title: Re: Depressed
Post by superhawk2300 on Apr 18^th, 2006, 8:19am

Guitar Bill,

Just an FYI - mt doc warned me not to over do the 02 - breathing pure o2 for extended periods can damage your lungs my man. 10 mintes a day at 12-15 lps is what he recommended.

Good to see metal is alive and well. I spent my early years playing guitar in 80's cover bands.

Maybe I'll unpack my rig and blow the dust off - you think I can still get tubes for a H&K Access pre-amp?

Ah, the good old days.....

Title: Re: Depressed
Post by vietvet2tours on Apr 18^th, 2006, 11:43am

on 04/18/06 at 08:19:43, superhawk2300 wrote:

Change Doctors.

Title: Re: Depressed
Post by Bigsouth1999 on Apr 18^th, 2006, 12:55pm

One more thing Dark. When I first went to the doctor he looked at me like I was an alien or something. It was because some doctors don't really no much about cluster headaches.

Be sure to PRINT off any and all relative information from this sight that can help you, help your doctor understand the severity of your CH's. Believe me, you don't want to go through the trile and error approach to things. It may take forever to get some relief.

I printed off most of what's on the left side of this page to illistraight exactly what my symptoms were and what meds were available. I am the most informed patient he's ever had. Trust me, it couldn't hurt...

Title: Re: Depressed
Post by Dragnlance on Apr 18^th, 2006, 1:28pm

Mandy,

Don't give up, not ever. If nothing else, get mad. Get mad at the monster in your head, get mad that the doc isn't helping. Get mad and use it.

I have one suggestion besides what is already said.

Try Kudzu. Get the stuff that is labeled "extract".
I use it with fantastic sucess. It has reduced the number, the intensity and duration of the hits. For a chronic CHer, that is saying a LOT. Try Kudzu. It can be found at any health food store. Cost is between 8 and 17 dollars for 60 pills. I take it twice a day, breakfast and supper. You might need to take more. After a week you will know.

Whatever happens, don't give in. Talk to us, give someone your phone number and they will call, but dont go jumping off a cliff. We are here, we understand and we can help, at least a little.

Praying for you Mandy...

Lance

Title: Re: Depressed
Post by AfraidOfTheDark on Apr 18^th, 2006, 2:26pm

I'm in much better spirits these days. And I still can't get over the sheer amount of support on this site. That alone is a huge help. I think as long as you know that someone understands, you'll be ok. It's when you start feeling alone that truly eats away at you.

I went to the doctor today, very nervous about what to expect. But she was surprisingly informed and understanding. After hearing about the financial worries, she put me on a sliding scale fee that dramatically reduced my bill. I was really thankful for that. She also worked with me to prescribe a preventive that was inexpensive (Verapamil) as well as giving me some Imitrex samples (I didn't know you could take Imitrex orally). She said if the Imitrex works, she'll give me more samples if I still need them. She wants me to get a CAT scan, but I can see many of you have done so with no results, and sheesh, I can't pay thousands of $ for one right now. So I think I'm gonna cancel the scan unless things get much worse. Right now my cycle still appears to be normal, the meds just aren't working the same.

Anyway, I still consider myself extremely lucky to be episodic. Those of you who are chronic have got to be hands down among the strongest souls on the planet. Thanks again to all of you for your words of encouragement, they have surely helped me to refocus the past couple of days. :)

Be well,
Mandy

Title: Re: Depressed
Post by Charlotte on Apr 18^th, 2006, 3:28pm

I'm glad you're feeling better. I'm with you in this site has made a difference how I feel, better than medicine.

Good luck.

Charlotte

Title: Re: Depressed
Post by Jasmyn on Apr 18^th, 2006, 3:34pm

on 04/18/06 at 03:28:13, TxBasslady wrote:

Mandy, Jean could not have said it better. You hang in there Girl and until you can get hold of the O2, try to get the Imitrex injections or another triptan that is more fast working than the Imitrex tablets. [smiley=hug.gif]

Title: Re: Depressed
Post by superhawk2300 on Apr 18^th, 2006, 6:38pm

on 04/18/06 at 11:43:22, vietvet2tours wrote:

Change Doctors.

Why would I do that? He is a friend of mine who gives me the strightdope, not the medical community line or the insurance company BS. 100% Oxygen at very high levels over a long period of time can be toxic and very harmful to one's health and can can cause problems like oxygen toxicity. For more information call the American Lung Association at 1-800-LUNG-USA .