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(Message started by: mike321 on Oct 29^th, 2004, 3:23pm)

Title: i wish this pain would go away
Post by mike321 on Oct 29^th, 2004, 3:23pm

My name is Mike and for the last 2 days i've been reading the message boards. So today i decided to join.
Let me tell you what i've been through. I have only slept 5 days out of the last 40 or so days. This pain i have, let me describe it to you-ahh the kip scale you have, if there was an 11 pain meter i'd be at that level. At first i thought it was migraines, but there is definately a big, big difference, i know because i experienced those to in the past. Anyway i've been to my doctor 3 times and all they prescribed were drugs that had no effect on the CH what so ever. I could swear that they made it worse. I've been to emergency room twice. I was almost there Saturday night because the cluster headache i had then almost made me jump in my car and commit suicide. The only thing that stopped me from doing this was, my wife and children lay asleep upstairs. My wife really doesn't understand what i'm going through i think sometimes. But she is starting to learn that this very serious. But you all know exactly what i'm going through. Anyway i use bags of ice alot to hold off on some of CH's but sometime that doesn't work, like on Saturday night. I went to my neurologist Monday and he prescribed Verap and Zomig, well the Zomig according to him was a 30 day supply and i've used it up in 3 days and now i'm assed out for the next 25 or so days. At this present time i'm suffering as i right but i'm only at a kip 3 or 4. But when this thing lets loose i have a feeling i will be either in the hospital or dead, its been like this for the last 29 hours and counting and i'm scrared as hell of what may happen. I would never wish this in my worse enemy. But reading the message boards has definately educated me to lot of things to try, beside prescription drugs. Good luck to all have this disease and may god help those who see's what this to there love ones.

Title: Re: i wish this pain would go away
Post by JJA on Oct 29^th, 2004, 3:56pm

Stay around and read up. You'll soon know more than your doctor if you don't already. I also suggest you have your wife visit this site. It will help her understand that you do not have headaches, you have CLUSTER HEADACHES. Ask questions and you'll get good advice. Welcome.

Jesse

Title: Re: i wish this pain would go away
Post by totka on Oct 29^th, 2004, 4:07pm

Welcome to the machine but sorry for your pain.

on 10/29/04 at 15:56:12, JJA wrote:

You'll soon know more than your doctor if you don't already.

Yes we are all experts on CH. :(
Try O2 and/or Imitrex.

PFDANs from Hungary,

Steve

Title: Re: i wish this pain would go away
Post by nani on Oct 29^th, 2004, 4:09pm

Welcome and I'm sorry you're here. Hang in there. When your next bad headache comes, call 911 and ask the paramedics to give you oxygen in a non-rebreather mask. You can do this more than once and at anytime of the day or night. Many have found relief from that. You don't have to go to the hospital, and that is why they are there. I don't use triptans at all (I can't) but all that Zomig in three days must be bad for you. I think that can also cause rebound headaches. Call your dr and let him know you've used all the Zomig and see what else he can do for you. If the oxygen works ask for a prescription for that. Invite your wife here so she can see the reality and you can both get the support you need. [smiley=hug.gif]

Title: Re: i wish this pain would go away
Post by echo on Oct 29^th, 2004, 4:23pm

Sorry to read that you are going through such a rough bout with the beast.

We definately can relate to what you're dealing with.

Welcome aboard, glad you found us, sorry that you needed to.

Title: Re: i wish this pain would go away
Post by BlueMeanie on Oct 29^th, 2004, 6:53pm

Hi Mike,

Sorry you have to be here but Welcome.

Definately try the 02. Imitrex works for most of us. Make sure you get a complete check up before using it though. Messes with blood pressure and heart.

Keep reading, you may find something that will work for you as everyone around here uses different ways for dealing with the Beast. Hope you find something that works for you soon.

Take care.

Title: Re: i wish this pain would go away
Post by ClusterChuck on Oct 29^th, 2004, 7:15pm

I am SO sorry you are in such pain!!! The pain you are describing is horrendous, but I may have some ~~good~~ somewhat better news for you. You MAY NOT have cluster headaches! I question this symptom:
Quote:

At this present time i'm suffering as i right but i'm only at a kip 3 or 4. But when this thing lets loose i have a feeling i will be either in the hospital or dead, its been like this for the last 29 hours and counting

Cluster headaches DO NOT last that long. I strongly suggest you get MRI, MRA, of the brain, neck and possibly back to make sure nothing else is causing this.

Describe an actual "hit" for us. Where, exactly, does it hurt? How long, from no pain to full pain? How long at full pain? How long from full pain to no pain? What do you do during a hit? How often do you get hit?

Remember, we are NOT doctors, but we do know a lot about it. Give us more information and lets see if we can help more. But, it is VERY important to get the MRA/MRI to rule out other causes. Even if you have had them in the past, this is a new type pain, get them again.

Chuck

Title: Re: i wish this pain would go away
Post by vig on Oct 29^th, 2004, 8:56pm

I agree with Nani, Get your wife to come here and read the supporters section. Maybe if you weren't going through this so alone, you might find it easier. Go on, find Ree and Margi and let them talk to your wife...

Title: Re: i wish this pain would go away
Post by Charlie on Oct 30^th, 2004, 2:22am

Welcome aboard Mike and if you stick around, you'll find lots of good ideas about dealing with this horror.

Here is one that worked very well for me:

Dr. Wright’s Circulatory Technique

What follows is a technique learned from a neurologist:

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. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. 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. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.

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.

Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head 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.

I hope this technique is helpful and I wish you the best of luck.

Charlie

Title: Re: i wish this pain would go away
Post by Wendy1 on Oct 31^st, 2004, 3:05am

Hi Mike,

I am SO SORRY you find yourself at this website...

However, this group is the place to be, read, read, read. We know what we are talking about.

I'm hear to support you and tell you that you are not alone. Suicide, yup, we've all felt that way. If you have to hit ER everyday, you do what you have to do to get through these things. But they will go away.

After 25 yrs (I am episodic) I have found that a huge (I did 360 mg of Regular) dose of Verapamil broke my cycle. It may take a week or so to do this. This is just what worked for me the last time. Please know that not all docs are comfortable with prescribing such a high dose, and some people find they need an even higher dose.

One piece of advice. What works for others may not work for you and vice versa. What works one time, may not the next. DON'T GIVE UP!!!!

We are all in this together. I wish you the best and hope for pain free days for you SOON! Wendy

Title: Re: i wish this pain would go away
Post by mike321 on Nov 1^st, 2004, 10:46am

From the bottom of my heart, i would like thank each and every one of you for your support. I've never felt such warmth from a group of people who are dealing the with the same issues that i'm dealing with. I have been reading alot of the posts. I definately feel that this thing is beatable with all of you guys and girls help. I actually went through the weekend headache free. I slept like a normal human being. Like i said in the earlier post, i am on the Verap so i'm praying that it starting kicking in on Friday. But this condition has definately taught me how to be humble to others. At first i thought this was just all in my head, but then i found this website and WOW, i never realized how many people are suffering from this beast. You all make me feel good and you let me know that its not just in "my head", but that this is actually a disease that Doctors need to really look into. So thanks again and i'll keep reading and posting with my updates.