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Utterly alone (Read 3342 times)
Mrs.P
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Utterly alone
Nov 19th, 2008 at 9:38am  
Hello. I just found this site this morning, as I am out of work again due to these headaches. I have had CH for about 5 years. Untreated my headaches last 3-5 hrs. I am currently having 3 to 4 a day after 11 months without one. It has now been 2 1/2 weeks of pain. I had no idea that so many other people suffer like this and I am sorry for you but so glad for me. I have felt utterly alone. No one understands how this feels at all. Sometimes I wonder how I can go on like this. My insurence only allows a certain number of shots a month, and so far they have lasted through the series, but this run has lasted so long. I live in terror because I have only 6 shots left. Then what will I do? I try to explain to my husband or friend but they dont understand. They tell me of "bad headaches" they have had, and how I am causing it to get worse by my worrying. I am expecting another headache in 5 hrs. It is like waiting for an exicution. I am drowning in this. Please someone tell me how to cope.
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BMoneeTheMoneeMan
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Re: Utterly alone
Reply #1 - Nov 19th, 2008 at 9:56am  
Sorry to hear about your tough times. There is a tremendous wealth of information here.  Read up. 

BTW, i just have to correct one thing you said, I am a stickler about facts:
You are not alone.  We are all here with you, and we fully understand your pain. 
You are not alone.  Don't ever forget that.

B$
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AussieBrian
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Re: Utterly alone
Reply #2 - Nov 19th, 2008 at 9:56am  
Mrs.P wrote on Nov 19th, 2008 at 9:38am:
...No one understands how this feels at all...

Betcha wrong. Double betcha and then some! Because we know how it feels and we understand completely. From the inside.

Welcome home, Mrs P.  Grab a chair and get comfortable because the amount of information here is almost frightening and it's all yours with bells on.

Where would you like to start?
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My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com
 
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MPMIII
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Re: Utterly alone
Reply #3 - Nov 19th, 2008 at 10:16am  
Welcome to the nuthouse.   You've come to right place.  You are not alone.  You won't find a magic snake oil cure here, but there is a wealth of knowledge on managing the pain and getting back to a "normal" existence.  Read. Read. Read.  Also, give us a run down on your current medication.  Prevents and aborts.  Are you seeing a neurologist?  If not, you need to get one ASAP.  You also need to look into oxygen.  Someone will be along shortly to give you the scoop.  Hang in there and know that it will get better.   In terms of the imitrex shots, you may be able to get a waiver for more shots.  Contact your insurance company and find out if they offer one.   Most insurance companies will allow for more shots with a letter from the doc.  Best of luck and hang in there.   Sorry you had to find us, but it gets better from here on out.

Regards,

Malcom
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Jeannie
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Re: Utterly alone
Reply #4 - Nov 19th, 2008 at 10:19am  
Mrs.P, 

I'm so glad that you found us!  You are NOT alone!  There are many here that will do all we can to help!

Have you ever tried oxygen?  It is the first line abortive around here.  Someone will be along soon to tell you all about it, I'm sure.  I have not used it yet as I am out of cycle right night now.  I do know that it is very effective for 70% of Ch sufferers and causes no rebound HAs.  Imitrex is very effective but it does cause you to get more HAs.    I will be trying not to use it in the future.  Of course, if all else fails, I will resort to it.  It always works for me so I won't say that I'll be able for sure to never use it again.   

Many find it helpful to drink an energy drink such a Red Bull at the first hint of a hit.  Drink it as fast as you can.  Ice also helps many while others find heat more beneficial.  I like to put ice on the back of my neck.  I have a lump there that  I have learned is a "Cluster Lump"... If I apply ice to it during a hit, it really helps.

Feel free to Pm me if you need to.  I'd be happy to offer any support that I can.

Pain Free Wishes,

Jeannie
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Linda_Howell
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Re: Utterly alone
Reply #5 - Nov 19th, 2008 at 11:53am  
Welcome Mrs.P,

I'm kind of a stickler for facts just like Brian.  You said your headaches last from 3 to 5 hours?  That is a bit long.  Are you certain you are having one long headache or are they going away for a bit and then ramping back up? 

I know you said you have Imitrex, but were you diagnosed as having CH? 

As evident from a lot of peoples posts here, including mine...a great many of us would be lost with-out 02  (see button below)  Wink
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Re: Utterly alone
Reply #6 - Nov 19th, 2008 at 11:53am  
To repeat, YOU ARE NOT ALONE.  Damned glad you found us. The only thing I can add is you need to look into prevent medications. That's a med you take while you are "on cycle" to reduce the number and intensity of your hits. If I had to rely only on imitrex I would be using 2-3 shots a day while on cycle.

When I am on cycle I use lithium, 1200 mg a day, blocks about 80% of my attacks. Takes about 10 days to reach a therapeudic level in my system, I use a prednisone taper to get me through that time period.

Then we need to get you on oxygen. 30 years of dancing with the beast it is my primary and most effective abortive. I rarely have to resort to those expensive imitrex shots anymore. You will need to read Chucks oxygen link under the meds section, spells out, with beautiful full color pictures, exactly what you'll need.

You are not alone and we DO understand.  Smiley Smiley

Guiseppi
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Re: Utterly alone
Reply #7 - Nov 19th, 2008 at 1:22pm  
No way. NOT alone. It is like waiting for an execution, if your waiting. It will come when it comes, try not to get wrapped up in it. You have to have an abortive, too much pain to wrestle with. Imitrex, 02, coffee, energy drinks. Have a treatment plan and some timing and you can battle it out with much less pain.
all the best
the bb
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Mrs.P
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Re: Utterly alone
Reply #8 - Nov 19th, 2008 at 2:42pm  
Thank you all SO MUCH!! Not just for the info, but for the support. I read so much this AM, and with the support  you all have shown, I went out to my Dr. More on that in a min.
I was diagnosed with CH a few years ago but thats about it. He gave me no info or anything after the cat scan. Until today I didnt even know that these were uncommon.  I felt like evryone else must handle it better than I was.
When I have a headache it is all on the left side. My sinus is full yet my nose runs. My left eye waters and I get covered with sweat. Those are the easy symptoms. The pain is life stopping. After I am left feeling like a rag. Untreated they do last very long. I am unsure if they are fading and coming back all I know is it takes forever to  be gone. With my Imitrex they last about 1/2 hour.
After reading my first three responses this morning I just sat and cried. Thank you, Thank you Thank you!!!! Your kindness has done more for me than any meds.
Just not being alone has changed my outlook, and after reading so much I took off to my doctor without feeling like I was being a "big baby". He has given me propranolol er 120MG. He said he wants to try that first, and if that doesnt help he has 1 more pill to try but that is "heavy duty". Unsure really what that means. Then, if THAT didnt work, he would finally give me a referral to a neurologist. I am in an HMO so I cant just go on my own. I asked about the oxygen but he dismissed it and wanted to try the pills. Has anyone taken these? Does oxygen need a dr. order?
Thank you all so much. You've no clue how much you've helped.
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Re: Utterly alone
Reply #9 - Nov 19th, 2008 at 2:53pm  
Ask your doc to give you the referral to a neuro NOW!
Beta blockers (propranolol) are not the proper medication for cluster headaches.

Oliver
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Re: Utterly alone
Reply #10 - Nov 19th, 2008 at 3:07pm  
Some here use welders 02.  It is the same as the medical grade, I'm told.  You do not need a script for it!

Jeannie
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MPMIII
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Re: Utterly alone
Reply #11 - Nov 19th, 2008 at 3:34pm  
Mrs. P,

Get a referral to a neurologist ASAP.   Sounds like you doc is not up to date on treatment for clusters.   You need to get on a preventative.  I use Verapamil.  It has worked wonders for me.  I'm a chronic and it keeps my hits away 90% of the time.  If I miss two days of it, I get slammed with five or more hits a day.  Downside of Verapamil is my memory sucks, but hey, I've forgotten what it was like to have a memory.   Armed with literature from this site and a good neuro, you should be able to get this beast under control.  You should not have to wait for some relief.  Insist upon the referral.  Best of luck.

Regards,

Malcom
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Re: Utterly alone
Reply #12 - Nov 19th, 2008 at 4:12pm  
Alone no more Mrs.P

Looks like you have got some great advice already.

You definetly need to see a neuro and try some preventatives.

I'm new to using O2 and I'm here to tell ya, I wish I would have known about it 35 years ago.

                                     Good Luck To Ya
                                             JPC
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BMoneeTheMoneeMan
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Re: Utterly alone
Reply #13 - Nov 19th, 2008 at 4:15pm  
We're SO glad you got a lift up this morning.

Like Oliver said, try to find a Neuro.  Propranolol is not commonly used for CH.  Verapimil is very commonly used.  Both are blood pressure meds, but they are different.  One is a beta blocker, the other is a calcium channel blocker. 

Also, 120mg to start on propranolol seems quite high.  I take it for another condition i have, and I take 40mg a day.  I know some people that take 20mg or even 10mg a day. 

It's a bright new day, Doll!  The sun always shines here.............or maybe that is just the reflection from Tony's bald head.

Grin
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Re: Utterly alone
Reply #14 - Nov 19th, 2008 at 5:12pm  
BMoneeTheMoneeMan is correct that Inderal/Propranolol is not commonly used for CH (although it has been in the past, way long past).  My husband used/was prescribed it when he was first diagnosed and that's been over 25 years ago.  I also agree that 120 mg is a relatively high dose to start out with.  Be prepared, it may knock you for a loop, make you real tired and zap your energy.

With everyone else, get to a neuro.
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Re: Utterly alone
Reply #15 - Nov 19th, 2008 at 9:06pm  
i am and the others are always around for you and no you are alone no more. we understand.
however your doc is not in tune with ch obviously.
propananol is quite useless for ch (at least for me) verapamil is much better, your doc sounds very un informed about o2.
yes welders grade is used by some here due to difficult doc's.
i am get a bit tweaked about dr's that wont let their god complex go long enough to actually help you.
but i wont get started.  you will come to know there are great family here and now you are part of it.
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Re: Utterly alone
Reply #16 - Nov 20th, 2008 at 12:25am  
The first neuro that I went to prescribed propanolol  --40 mg.  Absolutely no effect on the CH.  found a new doc, a great neuro,  and got on different more effective medication for me ( verapamil 660mg a day)  stopped the pain but I believe it extended my cycle- its a trade off though-  I was sure glad to be pain free.  Please be sure if you get a script for o2 that you get the proper flow rate- my first neuro ( the one I fired)  prescribed me 02 and it only went to 8lpm.  I used it but it wasnt too effective for me because of that.  Next cycle,  I'll know better. 

I also might ask your doctor what this heavy duty med is that he is thinking of next.  That way you can research it first and see if it is a med that is indicated for the treatment of CH>  You can arm yourself iwth loads of info to take back to your doctor regarding effective meds and the research associated with it should propranolol not work out for you.   Read read and then read some more.  There is tons of info on this board to steer you in the right direction and provide some answers to this complicated problem.  It is likely you'll have to be a step ahead of your doctor on this one-

good luck-

Kelly

Kelly
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Re: Utterly alone
Reply #17 - Nov 20th, 2008 at 6:38am  
Welcome to Clusterville -- and know you will NEVER be alone again.

Now, about your doc. Sounds like a nice guy who just doesn't know anything about CH. O2 has been established AS the first line of treatment for CH - he just hasn't been keeping up. On the meds board Chuck has a post you need to print out and take to him --INSIST ON A SCRIPT FOR IT!!! Be sure it is at least 15 (25 is better) liters per minute with a non-rebreather mask

Red Bull at the first sign of a hit has helped a lot of us to abort a hit. And melatonin at night (6-15mg) helps a lot of us get some rest at night.

Get a referral to a neuro and make SURE the neuro KNOWS something about CH (question him/her about it). If he/she doesn't FIND ONE THAT DOES!  We've all found out over the years that not all neuros know what they're doing and can do a lot of harm.

A prevent is important. The drugs of choice are lithium, verapamil and topamax. The aborts of choice are O2, Imitrex and Cafergot.

One thing to be noted - WE ARE ALL DIFFERENT AND REACT DIFFERENTLY TO DIFFERENT MEDS. So what works for me, might not necessarily work for you (but then again it might).

Do NOT ever be afraid to be an ADVOCATE in your treatment. Doctors don't treat that many cases of CH and most of the time don't keep up on what's new or what helps. They only get about 6 hours on "headaches" in med school (all headaches), so the poor guys just don't know. We have to EDUCATE them. Even my neuro (who is great) always asks me if we've come up with anything new on ch.com when I visit him. So never be afraid to TELL your doc what YOU want.  Remember they're just "practicing".

Again, welcome to Clusterville. Sorry you HAD to find us, but glad you're here. Ask questions, vent, but just make yourself at home. There'll be someone along to help.

Hugs BD
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Re: Utterly alone
Reply #18 - Nov 20th, 2008 at 11:36am  
Cry I too am very sorry for you.  I am not a CHer, but my 37 year old son is.  As for your husband, get him on the "supporter's" link.  He needs to know that CH is nothing like migrains.  While most people, I have surmized from this board" do not necessarily want someone with them all the time, it is important that someone is around, aware and willing to help.  When the beast comes to visit our house, my husband and I are both on alert.  Adam has found his "position" in the living room.  When the hit first starts, I help him get settled in his space, get the O2 going, get him a soda, although I am going to pick up some red bull today, get him a blanket and other things he is comfortable with, everyone is different.  Then, I go to another room.  Because he does not feel like calling me, we have some hard candy on the table by him and he thorws one to hit the wall in the hall. That's my signal that I might be useful.  He also knows that during the night to wake me up so that I can do whatever.  I come to work a lot of days looking hung over, but he goes to work after & during these attacks.  I have come to realize that I have never had and hope to never have the kind of pain he experiences.  When I have an ache or pain and complain about it, I look at him and apologize.  I have nothing to complain about.
You might also try finding CHer's in your area.  Where are you, by the way?  You can go to the meetings and gatherings and see if anything is planned in your area.  We are trying to get a NC and SC going, just get together and know that you ARE NOT ALONE.

Feel free to PM me if you want.

Hang in there  Smiley

Louise Also known as "mamaweezer"
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Re: Utterly alone
Reply #19 - Nov 20th, 2008 at 8:47pm  
Mrs. P:

Sorry you have to deal with this horror but you are indeed not alone. I was stunned that there are so many and so many varieties. I too, took propanolol. It has a very iffy history for CH but I think it was helpful. I have to say that I'm a rarity.....not many have had luck with it. What worked better for me is this technique that I learned about 20 years ago:

                                         Dr. Wright’s Circulatory Technique:

I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. Think of feeling your pulse in your hand. Increased circulation will result in a reddening and warming of the hands. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Try experimenting between attacks. You will find that it gets easier with practice. Every now and then it will work almost immediately. I lived for those moments.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

I used to try to imagine I was pushing blood away from my neck into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.

Charlie      
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Re: Utterly alone
Reply #20 - Nov 21st, 2008 at 6:52am  
Hi Mrs. P and welcome. Sorry your not getting the support you need from your hubby, but you sure will from all of us. You are with your new family now that understands your pain.

Please get an appointment with the neuro, you need a doc that understands CH's. I will also push the o2 as it has been a god send to me and most here.

100% o2 with a 15 lpm regulator with a non-rebreather mask. Get on the o2 at the very first sign of an on-coming hit. The o2 stops my pain within minutes if caught in time. I also take 480mg daily Verapamil as a prevent but talk to your doc (hopefully your new neuro) about what might work for you.

I just wanted to say hi and we are here for you.

  Barry Smiley
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