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        Cluster Headache Help and Support >> Cluster Headache Specific >> How do I survive this?
        
(Message started by: kr300 on Dec 12^th, 2007, 11:42pm)

Title: How do I survive this?
Post by kr300 on Dec 12^th, 2007, 11:42pm

Hi. This is my first post. I just found this website and thought I'd try to get some help here or at least some understanding.
I don't think I can do this anymore. I can't get help. No one understands.
This started for the first time for me in early October of this year and I have several of them every night now always at the same time. I can't stand the pain. It is just unbelievable. I'm afraid to go to sleep because if I fall asleep they come for sure. So I've been living on very little sleep. This is adding to the problem because I'm so tired now I'm starting to not care anymore about anything.
No one will help me at ER, at my doctors, at open clinics.
I'm losing my job because of my absences from work.
I was first treated like they were tension headaches and lately that they are migraines. But I have had migraines and I feel that they are a walk in the park compared to these. From the symptoms list on this site and at the Mayo Clinic site, it seems like I have pretty typical cluster headaches.
The treatments (a narcotic and maxalt and Inderal (propanolol) so far) I've been given don't do anything. People laugh when I say this, but I really feel like I'm being tortured every night. The earliest I can get in to a neurologist is February so that's how serious they think this is. I feel like ripping the face off the next doctor that tells me to just lie quietly in a dark room.
I don't know how anyone survives this. I am starting to think that it would be better to die.

Title: Re: How do I survive this?
Post by nani on Dec 13^th, 2007, 12:03am

on 12/12/07 at 23:42:38, kr300 wrote:

I am starting to think that it would be better to die.

I know what you mean, I've been there. Trouble is, not having clusters is much less enjoyable when you're dead.

Welcome home. It looks like the first thing you need to do is find a headache specialist for a proper diagnosis.
While that's in progress, read all you can here. There are decades of combined experience here, all of it helpful.

Read up on: Energy drinks, it seems the combo of caffeine and taurine can abort headaches for many of us.
Kudzu supplements, on the medications board, works as a prevent for many CH and migraine sufferers.

Oxygen, there's a link on the left.

Finally, start keeping a headache diary. It may help the neuro diagnose you. Note the time of day, duration and intensity of each attack.

Keep us posted.
pain free wishes, nani

Title: Re: How do I survive this?
Post by BaseballCoach on Dec 13^th, 2007, 12:06am

Hey! I'm new here so I can't offer nearly as much as most people, but please don't feel that way! You will get help and it will feel so GREAT....

I use imitrex injections and they ALWAYS make the pain go away....the only problem i run into is that I run out every so often...My neurologists is good about "squeezing me in" because he knows how bad ch's are. He's also really good about giving me imitrex samples when i run out....Most on here suggest O2, but it didn't work for me....I would suggest you go TO a neuro....and keep going until you find one that listens when you tell then you are pretty sure you have CH's...tell them there is no way you can wait any longer and you need relief now....Good luck and keep us updated..

Title: Re: How do I survive this?
Post by Redd on Dec 13^th, 2007, 12:10am

Ok...in the inerum till you get the neuro appt. Energy drinks at the first sign of an attack. Slam a Red Bull or equvelent (or two) The caffiene and tourine combo can be a great abortive to many of us.

Try ice packs to the back of your neck. On the side of the pain. Many find ice (or a bag of frozen peas or corn to help). If cold isn't your thing try a hot shower with the hot water hitting the site of the pain. Some find heat better than ice.

Not sure where you live, I didn't look. But if in the South and you can get your face near an air conditioner suck in the cold air from that.

You say nights are your worst times, try 9-15 mg melatonin 30 minutes before bedtime. If after 3-4 days this is not effective to help you sleep try adding 50 mg of Benedryl at the same time. This can interrupt the REM cycle and help you sleep threw the usual hit times. You'll want some caffine in the morning to get rid of the sleepy hangover feeling but a good strong cuppa Joe works every time.

Title: Re: How do I survive this?
Post by George_J on Dec 13^th, 2007, 1:03am

on 12/12/07 at 23:42:38, kr300 wrote:

Well, if you have cluster headache, you've come to one of the few places where people do understand. We've all been where you are now. And we'll try to help as best we can.

on 12/12/07 at 23:42:38, kr300 wrote:

I don't know how anyone survives this. I am starting to think that it would be better to die.

It's not. Life's a great gift, and it's worth any price that must be paid. CH is just the price that those of us here must pay. Others may not have to, but we do. That's just the way it is.

Most of us have had these for years. Many here are chronics--i.e., have them daily, year-round, year in and year out.

It's this way: You didn't ask to have them, but there they are. So your choice becomes--what will I do about that?

There are effective ways to control the attacks. Some of the folks here have mentioned a few. You can learn to take control of this thing, and learn to live with CH. People here do that every single day.

Your attitude is the key--you can choose to be a victim, or you can choose to be a warrior. We often say that clusterheads are the toughest people in the world--and they are.

You're one of us. We won't let you give up.

So let's get started, eh?

Best wishes, and welcome home,

George

Title: Re: How do I survive this?
Post by George_J on Dec 13^th, 2007, 1:55am

A couple of things you can try before you see the neurologist:

As others have mentioned,

1. Cold. A bag of frozen peas placed on the back of your neck, or on your face, or ice wrapped in a sopping wet cloth. Cold can reduce the pain of an attack, as long as the compress is in place.

2. Energy drinks with caffeine and taurine, i.e., Red Bull, etc. Sounds nuts, but for some it can stop an attack completely. For me, it won't work on a full blown attack, but it can eliminate a "shadow" (a weaker attack). You have to chug it. Get it down as quickly as possible.

3. Stop the narcotics if you haven't already done so. They don't help many of us at all (me included), and may cause rebound headaches.

4. If you haven't already figured this out, QUIT USING ALCOHOL IF YOU ARE DRINKING. For a large proportion of us, alcohol is a trigger when we're in an active cycle. I won't touch the stuff when I'm in cycle--it's a guaranteed headache. Even a swallow will do it.

5. If you're anywhere near a fire station when you're having an attack, stop in and ask to try oxygen with a demand regulator, or at 15 liters per minute with a non-rebreather mask. We've found that the paramedics are often willing to let us use their oxygen to abort an acute attack. If oxygen works for you, you'll see that it may completely kill a full-blown attack within ten minutes. If it works, that's valuable information--oxygen is the primary abortive of choice for a large proportion of us.

6. This will sound impossible, but it is not. When you get hit, try not to panic. Breathe deeply, and relax as much as possible. Fighting a hit will often make it worse. Very difficult, I know, but it's worth it.

7. Spend some time talking to the folks here--there's lots of good information, and plenty of people who are willing to help you get through this thing.

Again, welcome.

Best,

George

Title: Re: How do I survive this?
Post by Bob_Johnson on Dec 13^th, 2007, 6:54am

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3. Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. http://www.achenet.org On-line screen to find a physician.

5. http://www.headaches.org/consumer/index.html Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.
=====================
http://www.headachedrugs.com/pdf/ha2006.pdf Dr. Robbins site. Then explore the entire site by deleting everything following. com/ and then hit enter.
=========================================================================
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)

http://www.plainboard.com/ch/chtherapy.pdf

Title: Re: How do I survive this?
Post by barry_sword on Dec 13^th, 2007, 7:15am

I can't say anymore than what has been said already, but please try to get your Neuro to let you try the o2, at 15lpm and a non-rebreather mask. It is my godsend. Print the o2 info to your left and show the Neuro.

You are not alone with this and WE UNDERSTAND what you are going through. Hang in there and anytime you need a shoulder or need to vent, Clusterville is open 24/7.

You will survive this! Welcome to your new home.
Barry

Title: Re: How do I survive this?
Post by Guiseppi on Dec 13^th, 2007, 10:07am

You've already rceived some excellent treatment advice, from people who are living what you're living. That's one of the things this board does.

The other "thing" we do is make damned sure every one gets taken care of. PM me and I'll be on the phone with you in a second offering any support/help I can give you. Let us know what part of the world you live in so we know who is close to you. You aint alone anymore.

Guiseppi

Title: Re: How do I survive this?
Post by sandie99 on Dec 13^th, 2007, 12:04pm

First of all, welcome. :)

Secondly, check, if you can get an appointment to see a neuro earlier - you might get cancellation appointment, who knows? (I know too well how hellish it is to wait for over a month for an appointment with no working meds).

If you haven't tried hot/cold combos, coffee, energy drinks, caffeine tablets, taurine tablets, ginger ale... then give them a try. Do you take magnesium tablets? If not, adding them to your daily routine can also help (once I first added them, they actually stopped one hit and lowered the intensity of the hits).

You are not ALONE. You can find people of all ages who understand what you're going through almost any time of the day and night. If you want to talk, vent, ask, share, chat, advice, experiences, whatever, we're here. Let us know what's going on.

I know very well how depressing illness ch can be. I'v e been through "cluster blues" bouts myself, I know how low ch can make one feel. But I'm here - I decided not to let the beast win. When those dark feelings hit you, come here and let us know. This is one caring family.

Wishing you lots of Pain-Free Days,
Sanna

Title: Re: How do I survive this?
Post by billyjoe on Dec 13^th, 2007, 1:09pm

I can relate to the long wait to see a Neuro. Because I had a history, I was able to get my GP to prescribe the drugs I had in the past to hold me over until I saw my neuro. Perhaps you can find a GP that can prescribe something to help.

The only other tip I can add is pacing. If you haven't noticed yet, sitting in the dark does not help. Walking around does help, a little. Some find more strenuous exercise helps more and some find it a trigger.

Hang in there. This too shall pass.

Title: Re: How do I survive this?
Post by Chappy on Dec 14^th, 2007, 5:52am

kr300,

Just wanted to say - please hang in there! My struggle started 8 years ago, and it took that long to get a diagnosis. The progress was slow, so the symptoms weren't clear enough to diagnose CH right away for me, but once I found the right medications I found they really could give my life back.

First and foremost, two things the others have said are extremely important. I suffer from chronic cluster headaches that could have been avoided if I had been diagnosed earlier. 3 years ago a pain doctor started prescribing narcotics to me, morphine sulfate ER and Vicodin, which took away some of the pain for about a year. Before that I self-medicated with alcohol when the pain was too much to take. Eventually the headaches became daily and nightly, and never ceased, and from what I've read narcotics turn cluster headaches into chronic cluster headaches, and you DON'T want that! I've also learned that alcohol takes the pain away for a night, but makes them worse over the next few nights, but the effect wasn't obvious at first.

The most effective treatements seem to be one treatment in each of these classes. Since your headaches are waking you up when you fall asleep, you should be able to convince your doctor that CH is a likely diagnosis and get him/her to prescribe something before your February appointment to get some relief.
Imitrex (injections or nasal) - nasal was the first thing that ever stopped my headache after 2 years
Oxygen
Topomax (or some other anti-seizure med)
Verapamil (maybe only if your bp gets high with headaches - buy a bp monitor to use at home to check)

BEG your primary doctor for some of these - don't wait!!!!

Start the following right now, since you don't need a doctor to buy these. I found that that these helped before I even knew I had CH.
Melatonin, 9-15mg 30 minutes before bedtime
Red Bulls or energy drinks in the morning (don't drink them more than 7 hours before bedtime) - Caffeine and Taurine are great for CH and migraine-type headaches

Finally, here is one thing I learned. It's great to go to neuros and specialists that your insurance will pay for, but an offic visit costs about $100 or so. If you're suffering, it may be worth it to just open up the yellow pages and call every neuro in your area to find one who can take you as soon as possible. Or, call the neuros in your insurance network and tell them how desperate your situation is, and maybe they'll take you sooner. When you're dealing with an illness like this, you have to learn to be a little pushy, because many doctors aren't going to treat your condition aggressively, and you could end up suffering much longer than you need to. Once they prescribe something, if it doesn't work, get on the phone and ask for the next solution. If the doctor you're seeing isn't responding, fire them and find another. All doctors are not created equal, and many are happy to let you suffer two months between each visit.

Title: Re: How do I survive this?
Post by nani on Dec 14^th, 2007, 10:17am

on 12/14/07 at 05:52:43, Chappy wrote:

I suffer from chronic cluster headaches that could have been avoided if I had been diagnosed earlier.

No, not getting a diagnosis doesn't cause one to become chronic.

on 12/14/07 at 05:52:43, Chappy wrote:

3 years ago a pain doctor started prescribing narcotics to me, morphine sulfate ER and Vicodin, which took away some of the pain for about a year. ... and from what I've read narcotics turn cluster headaches into chronic cluster headaches, and you DON'T want that!

Also, no. Narcotics don't work well for clusters (they take too long) and narcotic use doesn't make you chronic. They can cause other headaches, like medication overuse headaches, and they are a cluster trigger for some people... but using narcotics does not make someone chronic.

on 12/14/07 at 05:52:43, Chappy wrote:

I've also learned that alcohol takes the pain away for a night, but makes them worse over the next few nights, but the effect wasn't obvious at first.

Alcohol is a trigger for many of us... avoid it. I'm having trouble believing that it could take the pain away for a night, or at all. Even if it's not a trigger for you, it won't likely help.

kr300...how are you doing? Check in, OK?

Title: Re: How do I survive this?
Post by Karla on Dec 14^th, 2007, 1:50pm

Quite often with chronic pain comes depression and helplessness and wanting to end it all. Not all people experience this but some do. Please talk to your dr and let him know how you are feeling mentally. Let him know that these ha are making you feel suicidal and helpless. They have antidepressants that you can take that can make all the difference in the world for you. It sure made the difference for me when I was at the end of my rope. If you don't find a difference on the antidepressant don't give up. Go back to your dr and let them know so they can adjust the dosage so it is right for you. Please also post here and get phone numbers so you are not alone in this fight.

Title: Re: How do I survive this?
Post by vietvet2tours on Dec 14^th, 2007, 2:06pm

On the outside chance you come back oxygen will empower you.It gives you a weapon against ch.

Potter

Title: Re: How do I survive this?
Post by octobermay on Dec 14^th, 2007, 2:11pm

hi, your story sounds like mine. I havent been diagnosed by a dr yet either, so i dont know how much help i can be. just wanted to let you know that i know EXACTLY what you are going through. i went through the same thing with always getting one when i sleep, so i felt like i had insomnia because i was so afraid. then i would be soooo tired i didnt care either. i felt trapped in my own head- no way to escape. and I have 2 young kids to keep up with. Mine went away after 8 1/2 weeks. I hope yours comes to an end soon. different things work for different people. if you need anyone to talk to, i am here.

Title: Re: How do I survive this?
Post by BarbaraD on Dec 14^th, 2007, 3:36pm

kr???

What happened to you -- Check in. Now you've got us concerned.

Hugs BD

Title: Re: How do I survive this?
Post by Linda_Howell on Dec 14^th, 2007, 5:19pm

KR,
you give us no indication of where you live. [smiley=huh.gif] If you ever come back here let us know. We can help you get a neuro that is familiar with CH near you.

Title: Re: How do I survive this?
Post by christophercheek on Dec 16^th, 2007, 1:39am

hi kr.

I know what your going through I've had these things for 16 years they are nothing nice. remember nothing is more precious than life, take the advice these wonderfull people have given you. I am eposdic for the time being but 2 years ago I had a 5 year stretch end that was chronic with no more than 2 days pain free.. right now i believe I'm at the end of an eposode..I have found nothing that works in the 16 years that prevents them I Pray you find some thing that works for you. the energy drink thing seems to cut mine down from an hour to 25 to 30 min. I am also here if you need someone to talk to.....

Chris

P.S. pain free wishes for you..