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ScottEinDC
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3 months and DEPRESSED
« on: Jan 16th, 2006, 8:02pm »
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I'm into my third month of this cycle.  I can't believe it's gone on this long.  OMG!  I've gotten to the point of complete depression.  All I want to do is crawl under the bed and stay there until it's all gone.  
 
I'm calling my doctor tomorrow to see what more we might be able to try.  I haven't gotten the O2 yet and I'm going to ask about it, as well as seeing a neuro.  
 
I've had the MRI, all is fine.  Tried four different abortive pills and settled on one...Maxalt...and it sometimes works, sometimes doesn't.  
 
We tried some blood pressure medicine, but that made things worse, so stopped that.  
 
I'm taking some melatonin to get me through the night.  
 
I can't stand it anymore.  Today already had three hits.  Another one while driving!!  More often than not I'm pushed to the point of sobbing tears.PLEASE PLEASE PLEASE make it stop.
 
 
 
 
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Re: 3 months and DEPRESSED
« Reply #1 on: Jan 16th, 2006, 8:06pm »
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Hi Scott,
 
You're certainly in the right place to vent.  There's not a one of us who hasn't been where you are.
 
Have you seen this link?  If not, I urge you to follow it, print it out and take it to your doc.
 
http://www.brightok.net/~mnjday/chtherapy.pdf
 
I know of no pills that work fast enough to abort a full blown cluster attack.  Oxygen or Imitrex injects, or nasal sprays are required.  Catch up on your reading and demand a neuro consult and the meds you need
 
Meantime, hang in there.  Glad the Melatonin is helping somewhat.
 
Hugs,
 
Kris
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Re: 3 months and DEPRESSED
« Reply #2 on: Jan 16th, 2006, 8:10pm »
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I'm so sorry, Scott.  Really try for the O2 when you see your doc.  If you take along some printed out info on the use of O2 for CH, it should help.  I know you are frustrated about this, but you will find something that works, at least to abort.  Let us know how you fare with your appointment.  
Patti
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Re: 3 months and DEPRESSED
« Reply #3 on: Jan 16th, 2006, 8:19pm »
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Please TAKE IT EASY. The pain will get to an end and you'll get many PF days/night. In my case, the more I get worried the more pain and attacks I have.
My cycles never last less than 5(five) months, and I also experienced one cycle which stayed 2 months on my right side of the head (I was happy because it seemed to have ended in only 2 months) and then after two PF days I've got 4 extra months on my left side, all in the same package.
As you can see I'm still here, that cycle has ended as yours will also. I hope you get better very soon.
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Re: 3 months and DEPRESSED
« Reply #4 on: Jan 16th, 2006, 8:24pm »
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You need to DEMAND oxygen!!!!!!!!!!
Pills are too slow my friend as most will attest to.
 
You might want to consider zyprexa as an abortive.
It works as quick as imitrex jabs but does not have the nasty side effects!!!!
 
Oxygen Oxygen Oxygen!!!!!!!!!
 
Hang in there my friend.
Try not to worry about how long these things will last and that you can not take anymore.
 
You sure can!
 
It will be over when it is over and that is what you have to accept!
 
It is what it is so take a breath and do whatcha gotta do .
 
Best to you.
 
Believe me we all understand.
 
Eric
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Re: 3 months and DEPRESSED
« Reply #5 on: Jan 16th, 2006, 9:01pm »
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Sounds like it's time for this shit to end.
 
Talk to your Doc about a prednisone taper.
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Re: 3 months and DEPRESSED
« Reply #6 on: Jan 16th, 2006, 9:04pm »
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The long cycles piss me off so much even I stop liking me. God knows they do wear you down. Oxygen gets mentioned a lot on this board. Without it I have no sanity. It works, it works fast, and for the last 10 years it keeps on working. Print out the info on oxygen and bring it with you to your doctor. Used correctly it's a damned miracle, used incorrectly it can be almost useless. As with everyone else on this board, you are in my daily prayers, hang in there.
 
Guiseppi
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Re: 3 months and DEPRESSED
« Reply #7 on: Jan 16th, 2006, 9:06pm »
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You might talk to your doc about the DHE-45 IV (q 8 hrs until the cycle breaks -- usually about 3 days). When I was episodic and got to the point you're at now - that usually did it for me.  
 
But if you do go that route - make sure they know what the hell they're doing.... If you have any questions PM me and I'll bring you up to speed on this method.
 
Go ahead and vent. We've all been where you are. When I went chronic, I spent two years in the house. It was NOT a good time in my life. But you get over it.... eventually....
 
Hugs BD
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Re: 3 months and DEPRESSED
« Reply #8 on: Jan 16th, 2006, 10:35pm »
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If you asked for people to reply who had never been seriously depressed during a cycle, I bet you wouldn't have a single reply outside of newbies who are in their first couple of weeks.  We have all been there!!!!!!!!  
 
It WILL END!!!!!  You WILL FIND RELIEF!!!!!!!  
 
This beast plays with your head and your body and messes with it, vent here, cry here, yell here, whatever it takes but don't let it take you down.  We have all been there and it does get better and easier.  My cycle started just before Thanksgiving and I haven't slept more than 4 hours in a night since.  I get 3 HAs EVERY night at 6, 10 and 1 and each last 2 or more hrs usually even with O2.  
 
HOWEVER, O2 still knocks the pain down to a level that is much easier to live with almost every time.  YOU MUST GET IT.  DEMAND IT.  FIGHT FOR IT.  It is cheap, safe, easy , and effective (as much as anything is without side effects except dry mouth).  MAKE SURE YOU GET THE CORRECT TYPE OF MASK.  Read the tab on the left.  NON REBREATHER!!!!!  NON REBREAHERR!! !!  NON NON NON.... trust me... veyr important and the respirtory therapist wont know, so you need to write it down and make sure you get the right one.
 
I will be praying for you, as I do pray for all you guys that you find more pain free days ahead.  Even a day of just shadows would be refreshing, I bet.
 
Anyway, you are not alone.  In fact, welcome aboard.  If it took you 3 months to get depressed, I am damn impressed.  You are a ton tougher than I am.
 
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Re: 3 months and DEPRESSED
« Reply #9 on: Jan 17th, 2006, 12:14am »
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Hi Scott
 
You and I are in the in the same timeframe in our cycles 3 months. Most days I gotta catch myself to avoid the depressing thoughts.
 
After 30 years I know that this is the worst part of CH that we have to overcome. You try a new med, new doc whatever. Each time we find our hopes dashed having thought that at last something will work, then bam.
Depression can not only set in but it grows stronger with each hit.
 
Today I had a 2hr lunch with a former business partner of mine who at 55 is going through some major shit with severe arthritis, just found out he has adult onset diabetes, his appendix ruptured a couple months ago and he developed a serious infection he is still fighting. He has added about 60 pounds as well in the last year due to all kinds of stuff.  
He has been highly successfull in his life financially. But worked himself close to death physically.  
I asked him if he ever gets depressed and he said one day he was then he had to get back to work. Like us he doesnt sleep, only with different pains.
I told him the difference between he and I is the fact for me that I know a day will come when I wont have the pain.  
At that point I knew that I could not have said anything worse because his eyes welled up with tears and he said now I am depressed because the real difference is his problems will only get worse. We can see a light somewhere out there waiting for us to reach it.
 
Walk in the sunshine, wander in the woods, spend time alone in fresh air watching a tree grow, go out on the town with the exits in sight, laugh about the absurdity of our pain, Know that the pain itself can only make you stronger, Know that you are working through pain that others can never understand and above all know that a light is shining near the end. Then we can get back to it, its just a small setback in the journey we walk.
 
 
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Just for some additional support.
« Reply #10 on: Jan 17th, 2006, 12:15am »
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I have been suffering for 12 + years and just found trhis site.  Depression is ahuge part fo this (normal under such circumstances), but reading, learning and participating really helps with the psychological aspects. Talking to outsiders doesn't work for long, no one gets it unless they have been there.  All that you hear is about the bad HA they once had.  
 
While you are at your lowest, jump on here and read, read, read, read.   I know that is not always possible, but as soon as the eyse will focus well enough, there is always a story, tip, or chuckle to help you through.   Finding this place has been a real life saver for me this time around and better prepared me tp deal with the rest of the world strange as it seems right now.  
Pred tapers, Verapamil, and O2, O2, O2, are my weapons of choice and have reduced my twelve + week cycles down to about 2-3 weeks once a year with few K10 events.
 
 
All the best  to you and many PF moments.
 
Hang in there,
 
 
Rich.
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Re: 3 months and DEPRESSED
« Reply #11 on: Jan 17th, 2006, 1:41am »
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hi scott,
 
i really do sympathise with you on both counts -the ch and the depression . i suffer with bi-ploar disorder which is a cyclical mood disorder , that can be triggered by lack of sleep and stress etc..  
needless to say the ch have taken their toll on me ,in more ways than one and my depression has been very severe this time round .
ive been having the ch for approx 5 months now , and have been suicidal lots of times , its like a double whammy effect.
all i can say is that i think finally this forever cycle might be slowing down , i am 'only' getting hit twice a day and once at night , which is alot less than a month ago , when i thought i seriously would be better off dead - i just couldnt cope anymore .
but , i have , i am still here - i have only just found this site , and realised what it is wrong with me , so i dont have any meds or abortives etc,, yet . i am seeing neuro very soon , and praying for some relief .
as far as the depression side of things go , i have antidepressant drugs and mood stablizers which i take daily , but due to the ch , im not sure what cycle is causing what symptom , its all very complicated and hard to live with .
i have 2 children , who need me , and they are the only reason im still here and fighting , i dont/cant work , and most days feel like my life is over , and there is no point going on , its awful.
 
i really hope you get some relief soon , for both , try to stay strong xxxxxxxxxxxx
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Re: 3 months and DEPRESSED
« Reply #12 on: Jan 17th, 2006, 7:00am »
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Hey Scott-- ( Great Name) I'm pulling for you to have the cycle leave ASAP !! Good Luck with the doctor-I'm confident it will end soon. My most recent cycle was about three months before it started to tail off. Hopefully your cycle will be ending soon !!!---Scott--NY
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Re: 3 months and DEPRESSED
« Reply #13 on: Jan 17th, 2006, 8:41am »
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Everyone,
 
Thanks for all yoru kind words and prayers and all that.  It means a great deal coming from folks like yourselves who have been dealing with this as much as I.  I'm 30 and have been dealing with these for 15 years, my last 'remission' was almost two years, so I guess the beast needs to make sure I don't forget him.  It's just so nice to know there are others out there....I've shared information from here with my boss, partner and others and they are always confused and don't understand it.  I have to say that it's really just a migraine to get any sense of getting through...and we all know they are nothing like migraines.  So with the pain of the hits and the frustration of not having anyone understand what you're going through...ahhhh!  
 
That said, I hope to make some headway today with my Dr.  I'm really just going to try to get him on the phone and have him recommend me to a Neuro....love my GP, but I know the brain ain't his specialty.
 
Best of luck and hugs to you all!
 
Scott
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Re: 3 months and DEPRESSED
« Reply #14 on: Jan 17th, 2006, 8:52am »
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We have seen too many folks who find neuros just as unable to deal with complex headache as their primary care doc.
 
I'd suggest you looking for a headache clinic or a doc who has experience and INTEREST in working with headache.
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Re: 3 months and DEPRESSED
« Reply #15 on: Jan 17th, 2006, 10:34am »
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Things will get better.- at least you know what the trouble is= we spent a long time just trying to find out what the heck was happening!  We eventually found a family practitioner that actually knew what CH's were! He prescribed doxepin (an older anti-depressant that is not much used now) and it worked as a preventive for quite a while. However, even with increased dosage it seemed to have stopped being able to prevent or stop a cycle- so we have just tried the RC seeds. (See our Seeds Diary posts) Still taking a low dose of doxepin.
   He also gave us a prescription for O2 but told us we would probably have to pay for it, since CH is not one of the recognized reasons for O2. The first service was expensive- we had to pay monthly rental for the little cart that holds tank and $20 per tank .  Then a friend told us about buying a used cart from another service so we found one that would sell us a used cart-$20 I think- AND because we have to pay cash for the tanks, they sell them to us for $12- instead of $20.  We have not yet tried the special mask= but the O2  (along with ice pack on forehead) certainly does help overcome the CH's fairly quickly, if you start it right away.  
Good luck with whatever you try- and if it doesn't work- keep trying until you find what works for you.  We had NO luck with neurologists- long waits (a couple of months) for a first app't- and endless follow-up visits to try different meds, etc.-  CH sufferes want and need IMMEDIATE  help! If a Dr. does not understand that, he/she does not understand CH!  
  Remember that there ARE things that ARE helping people.  One will work for you. Many people believe that the Maker, when the world was new, made a cure for every ill- we just nave find it! Good luck - and may your seArch for help be blessed. AZ
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Re: 3 months and DEPRESSED
« Reply #16 on: Jan 17th, 2006, 1:17pm »
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1.  My insurance company didn't pay for O2 last year but this year they do.  You should fight for it.  Have you Doctor write a letter.  O2 is probably the most effective thing we got.
 
2.  There is a letter that was written to explain CH for friends and collegues that I have used a few times and is great.  
 
http://www.ouch-us.org/chgeneral/colleagueletter.htm
 
Print it out and let your friends and co-workers read it.  It does a good job explaining things.
 
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Re: 3 months and DEPRESSED
« Reply #17 on: Jan 17th, 2006, 5:21pm »
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Have you tried Migranal for your clusters?  It has really helped with mine.  As soon as I feel it coming on, I do the nasal spray twice with 15 minutes inbetween each.  It has worked so far.  Have had them for 6 years now.  Only attacks me in spring and fall so far.  
Hang in there pal.
Bill
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Re: 3 months and DEPRESSED
« Reply #18 on: Jan 17th, 2006, 5:27pm »
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WildBill: I am waiting 2 weeks now for my Migranol now that my insurance company says that i can have it.  How long does 1 dose work for you.  My Doc says it should work 24 hours but can be repeated 1 time within 24 hours if needed.
 
Migranol is expensive and very tough to get through insurance but if it works, I will be thrilled.
 
My Dr wants me to take it 1 hour before my usual 6 PM HA and he thinks it will allow me to sleep all night.
 
Your thoughts?
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Re: 3 months and DEPRESSED
« Reply #19 on: Jan 18th, 2006, 12:47am »
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Hang in there, Scott!  Wish I could offer more than that, but I'm new to this.  From reading through the replies to your post, you're in capable hands, and I've learned much just in reading this thread.
 
--Phil
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Re: 3 months and DEPRESSED
« Reply #20 on: Jan 18th, 2006, 1:20am »
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I think there are many of us who understand what it is like.
 
Cry because of the pain. Cry because you have it and don’t want it. Cry because you feel powerless to do anything about it…
 
Whatever you do don’t let it beat you. You fight back with everything you have and keep pushing forwarding to make it better.
 
It may not get better, may even get worse, but as long as you have it set in your mind that your not giving up and you have decided that your going to beat it no matter what then you have already won.
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Re: 3 months and DEPRESSED
« Reply #21 on: Jan 18th, 2006, 7:25am »
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Quote:
You might talk to your doc about the DHE-45 IV (q 8 hrs until the cycle breaks -- usually about 3 days). When I was episodic and got to the point you're at now - that usually did it for me.  

 
Ditto. When the pred. taper fails this is also my strategy. Last cycle lasted 9 months and was broken by the DHE IV.
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Re: 3 months and DEPRESSED
« Reply #22 on: Jan 18th, 2006, 10:50am »
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Scott,
 
I'm so sorry that the beast is giving you hard time right now.... hug  I recall very well the depression which CH brings. I know how horrifying it is when cycle goes on and on. I have tried more meds than I want to recall, but eventually maxalt and verpamil worked with me. I think it's a good idea to talk with your doc - I do hope that your doc knows ch well - and see what else is in there.
 
Lots of things can help out; magnesium and eating more fruits and veggies and less sugary and salty stuff made my attacks milder. I once got aborted ch attack with ice cream!
 
The important thing is to keep the faith: something will work. Your cycle will end. Remember that, okay? It's easy for me to tell this to others, because I know that it's possible to be PF /after being episodic and then chronic, getting depressed and losing faith, yet trying).
 
And always recall that here at ch.com there are always people who will understand what you're going through. This is right place to vent.
 
Best wishes & PF time,
Sanna
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Re: 3 months and DEPRESSED
« Reply #23 on: Jan 19th, 2006, 5:20pm »
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I am bi(polar!) and have found that a good way of dealing with both is o2 and Lamictal.  Lamictal is good because it is a mood stabilizer and anti-convulsant, not many side effects - unless you get the rash.  It can replace a couple of meds that you might be taking and the anti-convulsant part of it seems to help with the headaches.  Interestingly some of us smell weird odors during CH season.  This is also common with people who have epilepsy.  At any rate it may or may not help.
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Re: 3 months and DEPRESSED
« Reply #24 on: Jan 19th, 2006, 10:26pm »
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Scott,
CH and depression go hand in hand. Treat yourself. Remember as long as you still are in the fight, you win.
Hope your feelin better. Your not alone.
jb jammin
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