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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> NEW TO CLUSTERS< NOT HAPPY
        
(Message started by: jailcop on Mar 12^th, 2005, 9:52pm)

Title: NEW TO CLUSTERS< NOT HAPPY
Post by jailcop on Mar 12^th, 2005, 9:52pm

I am a 44 year old who never heard of a cluster headache until last Thursday. I was driving home from a friends about 10 AM when I started getting a pain in my forehead. Within 10 minutes it was one of the worst pains I have ever. It was so severe I drove myself to the emergency room. After a few shots of morphine I was feeling better. They did a CAT Scan to rule out a bleed in the brain. All there was normal. They gave me a prescription for Vicoden and told me to return if it got worse. Friday I was fine, but today ( Saturday ) it came back with a vengeance. I again returned to the ER, this time they did another CAT Scan and also a Spinal Tap to rule out any kind of vascular bleeding in the brain, again all was normal. This is when cluster headaches was mentioned. I have to do a follow up Monday with my family Doctor to confirm Cluster Headaches as the cause but the Emergency Doctor is pretty sure this is the cause. I'm hoping there is some type of treatment out there that will work without the effects of a narcotic. I am a corrections officer and can not be walking around my cell block stoned for lack of a better word. I look forward to any useful information this site can provide. :-[

Title: Re: NEW TO CLUSTERS< NOT HAPPY
Post by Kevin_M on Mar 12^th, 2005, 11:15pm

[quote author=jailcop link=board=knowya;num=1110682331;start=0#0 date=03/12/05 at 21:52:10]I'm hoping there is some type of treatment out there that will work without the effects of a narcotic. I am a corrections officer and can not be walking around my cell block stoned for lack of a better word. I look forward to any useful information this site can provide. :-[/quote]

Yeah, it's late tonight for me but don't worry, narcotics are a very last thought here. Yes, this is the place for useful information and I hope you get the right diagnosis and if clusters, your description of the pain seems familiar, a good doctor is an important asset, but this place will help immensely with what you may go through. It's especially crazy but indispensably helpful for the pain of clusters. Stick around and work through it with us, there's a lot at stake. Being new, questions and support are well addressed, don't worry.

Hopes of a different and less than cluster diagnosis.

Kevin M

Title: Re: NEW TO CLUSTERS< NOT HAPPY
Post by pattik on Mar 12^th, 2005, 11:43pm

You are still pretty early in the whole process of diagnosis.
You really need a neuro (who knows clusters) as well as a family doctor. Educate yourself as much as possible here on this site. You could start by taking the clustr quiz (link on the left). If and when you get a definitive cluster diagnosis, you can find much useful information here to abort headaches without narcotics. Oxygen helps many of us, and there are also some preventative meds which can help. You will also find links to help friends and co-workers to understand what you are dealing with. We sure hope what you have experienced is not the begining of cluster headaches, but if it is, welcome to Clusterville. :)

Title: Re: NEW TO CLUSTERS< NOT HAPPY
Post by jailcop on Mar 13^th, 2005, 5:44pm

No headach pain so far today, my back hurts from the spinal tap though. Been doing a lot or reading on this site. I hope what ever caused the 2 headachs I had are not clusters but at least if it is I know I'm not alone. Reading what some people are going through is scary. I see the family Doctor tomorrow and ( thanks to this site ) I feel more prepaired to ask questions. THANK YOU

Title: Re: NEW TO CLUSTERS< NOT HAPPY
Post by Kris_in_SJ on Mar 13^th, 2005, 8:57pm

Hi Jailcop,

Love your moniker! Welcome, and sorry you have to be here. Please read the medical info to the left. Print it out and take it to your doc. Also take the cluster quiz. Third request (aren't I a pushy bitch?) check your email. I'm sending a couple of articles that could be of use to both you and your GP (and the neurologist you'll probably be referred to).

Best of Luck and Many Hugs,

Kris

Title: Re: NEW TO CLUSTERS< NOT HAPPY
Post by Gator on Mar 14^th, 2005, 1:26am

Hola, Dude! Welcome to our little Garden of Eden!

I would agree with what has been posted here already. Too soon to jump on a diagnosis yet. First step would be to get with a good neuro with ch experience. An MRI/MRA is a better tool for diagnosing brain problems, especially if you think you may have CH.

Except for rare occassions, narcotics are a waste of time for ch. I've had clusters punch through 200mg of Demerol like I had taken nothing at all. There are meds that are more effective in preventing or lessening the frequency and severity of the attacks and other meds to abort attacks that break through the prevents. If you have ch, these will be the meds you need.

In the mean time, education is the key to getting the treatment you deserve. Read everything in the links to the left and on the OUCH Website. Also read through the threads in the various message boards. Mega amounts of information there.

I sincerely hope you do not have Cluster Headaches, but if you do, there is no better place than right here for information and support.

Title: Re: NEW TO CLUSTERS< NOT HAPPY
Post by jokrs2 on Mar 14^th, 2005, 2:03am

Welcome, but not to the nightmare :(. The people here sure understand what you are feeling. I was misdiagnosed for 20 years and ended up addicted to Morphine Sulfate for 14 years every day like clockwork. I never really got any relief until a doctor prescribed me my first triptan, I believe it was Maxalt. I then moved on to Imitrex. The problem was I was still taking the Morphine and that was probably just giving me HUGE rebound migraines, so I'm with Gator in saying opioids are not the answer and are just another problem. I am trying to get along with just Kudzu right now and am having some breaks in the cycles now. Hope you find answers and have pain free days and nights. Blessings, Joe
ps. went through my 5th day today on withdrawal from the morphine. And Kris is not a bitch! ;;D ;;D

Title: Re: NEW TO CLUSTERS< NOT HAPPY
Post by tom222 on Mar 14^th, 2005, 3:34pm

Hi all...not new to CH's but am new to this site, and found it interesting. I am 42 and I have been SUFFERING for seven years with CH's, and this cycle is the worse ever. Its good to know...or maybe not....that others have these things also. I have never felt pain the way I have been feeling it for the last four nights. Thank god I have a Dr. that understands and does not hesitate to get me the trex without all the BS of having to see him first.

Title: Re: NEW TO CLUSTERS< NOT HAPPY
Post by jailcop on Mar 14^th, 2005, 3:51pm

Well I had my follow up with my family doctor today. He made an appointment for me to see a neurologist Wednesday. There looking at this being either Clusters or Migraines but still have a few other things to look at like the fact I have high blood pressure. I'm not sure I understand the difference between Clusters and Migraines, what is the difference ? My pain is not one sided, it goes across my forehead from temple to temple. He said Clusters are normally one sided is this true ? What is the link for the quiz that is referenced I can't find it ? Sorry for all the questions but I'm the type of person who like to get as much information as possible before doing anything so I have a better understanding of what's going on. No real pain today just a dull throbbing but nothing I can't handle. I'm really glad I found this site. Well I have to go pick up my blood pressure medication, I look for to any help you can provide.
on 03/13/05 at 20:57:09, Kris_in_SJ wrote:

Title: Re: NEW TO CLUSTERS< NOT HAPPY
Post by pattik on Mar 14^th, 2005, 4:03pm

on 03/14/05 at 15:51:13, jailcop wrote:

My pain is not one sided, it goes across my forehead from temple to temple. He said Clusters are normally one sided is this true ? What is the link for the quiz that is referenced I can't find it ?

Hi again jailcop,
Clusters are always one-sided and have other traits as well. The link for the cluster quiz is on the left side of your screen-the fourth link from the top. The link just above it will explain some common cluster traits. Please check this info out before you see your neuro. It will help him/her to help you. Good luck with your diagnosis, and I'm glad that you are seeing a neuro to get this figured out.
p.k.
:)

Title: Re: NEW TO CLUSTERS< NOT HAPPY
Post by jailcop on Mar 14^th, 2005, 4:13pm

One more question, what are cycles ? How long are they etc. I'm not sure I know what they are.

Title: Re: NEW TO CLUSTERS< NOT HAPPY
Post by pattik on Mar 14^th, 2005, 4:23pm

Many, but not all CH'ers get their headaches in episodes, or cycles. They can last for a few weeks to a couple of months, and these episodes can come a couple of times a year for some. Please look around this site to get more specific information to help you get a diagnosis.

Title: Re: NEW TO CLUSTERS< NOT HAPPY
Post by jailcop on Mar 14^th, 2005, 4:29pm

I hate to be a pain, but maybe something is missing on my screen. I still can't fine the Quiz. What am I looking for that I can't seem to find....Thanks

Title: Re: NEW TO CLUSTERS< NOT HAPPY
Post by jokrs2 on Mar 14^th, 2005, 4:35pm

Right on Pattik. As a chronic for many years I am typically always in cycle with perhaps a couple of decent days a year but hopefully that is starting to change with recent results with Kudzu and learning from others and their experiences in the posts. Getting off morphine is my most recent accomplishment and I have NO doubt that the Kudzu helped lessen the withdrawal and now I can feel my own endorphines working again. What a blessing. I hope your cycles or demon hits are short and end completely. Joe

Jailcop. The left side is missing on my parents "webtv". Are you using something similar?

Title: Re: NEW TO CLUSTERS< NOT HAPPY
Post by jailcop on Mar 14^th, 2005, 4:43pm

Jailcop. The left side is missing on my parents "webtv". Are you using something similar........No regular PC but still nothing to the left.

Title: Re: NEW TO CLUSTERS< NOT HAPPY
Post by Magman on Mar 14^th, 2005, 4:51pm

on 03/14/05 at 16:43:38, jailcop wrote:

Jailcop. The left side is missing on my parents "webtv". Are you using something similar........No regular PC but still nothing to the left.

Jailcop, here are the links to the items listed on the left-side menu....
Cluster Quiz
http://www.clusterheadaches.com/quiz.html

Cluster Traits
http://www.clusterheadaches.com/traits.html

Oxygen Info
http://www.headachesupportgroups.com/oxygen/oxygen.htm

Cluster Survey
http://www.clusterheadaches.com/survey/index.html

Kip Scale
http://www.clusterheadaches.com/scale.html

Title: Re: NEW TO CLUSTERS< NOT HAPPY
Post by jailcop on Mar 14^th, 2005, 6:08pm

Thanks for all the help, I'm putting everything into a database and will take it with me to the Doctor..

Title: Re: NEW TO CLUSTERS< NOT HAPPY
Post by don on Mar 14^th, 2005, 7:43pm

Quote:

Reading what some people are going through is scary.

It sure is my friend but know these four things:

1. You are not alone, we know the pain
2. CH is not curable but it is treatable
3. The pain can be managed without narcotics.
4. Although it may seem unfathonable while under attack, there are worse things than CH.

Title: Re: NEW TO CLUSTERS< NOT HAPPY
Post by jailcop on Mar 14^th, 2005, 8:01pm

The pain I had was like when I had Kidney Stones but at least kidney stones can be removed. I would be hard to remove the brain although my wife says I don't use mine much. LOL
on 03/14/05 at 19:43:12, don wrote:

Title: Re: NEW TO CLUSTERS< NOT HAPPY
Post by don on Mar 14^th, 2005, 8:24pm

Quote:

although my wife says I don't use mine much.

At least she acknowledges you have one. Your already ahead of the game.

Title: Re: NEW TO CLUSTERS< NOT HAPPY
Post by TomM on Mar 15^th, 2005, 8:50am

JailCop--The links MagMan gave you are good. Be sure to educate your self on this but try very hard to NOT self-diagnosis. Many of us here have been around for years dealing with this and know a great deal but we are not doctors.
The three pieces of advice from me are:
1) Skip the narcotics--they tend to cause re-bound HA's (headaches).
2) Get to a Neurologist who knows HA's.
3) This board is a great group of supporters. Use it to its fullest.
Good Luck and welcome to loony bin!
TomM 8)

Title: Re: NEW TO CLUSTERS< NOT HAPPY
Post by jailcop on Mar 15^th, 2005, 10:29am

I'm on my way to the Doctors now, can't wait to see what he comes up with.

Title: Re: NEW TO CLUSTERS< NOT HAPPY
Post by sandie99 on Mar 15^th, 2005, 1:10pm

on 03/14/05 at 19:43:12, don wrote:

Amen to that.

Whatever you have, I am so sorry that you're hurting... :( I've suffered from several different HAs over the years. I do hope that you'll get diagnosis and treatment soon! :)

Best wishes,
Sandie

Title: Re: NEW TO CLUSTERS< NOT HAPPY
Post by jailcop on Mar 15^th, 2005, 8:20pm

I saw the neurologist today. On the way home another much less severe headache occurred in a different area of the head. Luckily I had 2 codeine pills with me, it made the drive home a bit difficult ( 20 miles ) but the pain went away quickly. The diagnosis is THUNDER CLAP HEADACHES. The doctor is very sure it's not clusters or migraines and still wants to do an MRI to rule out a blood flow problem. He didn't give me a way to combat the pain other than to go to the hospital for treatment if it's really bad. He said this type of pain is not likely to last or reoccur, as he put it they just happen sometimes. People will go through this and when it's over you may never get them again. The pain I had today started as a stiffening in the back of the neck followed by pressure on the top of the head ( not the forehead like before ) after about 20 minutes the pressure turned to pain. Not severe but enough to make you feel really lousy. I took the pills and when I got home I hit the couch and fell asleep. When I woke up an hour later the pain was gone but the pressure is still there. I informed the doctor all about what I had read about clusters but he said although some of the symptoms are similar there not the same. Well if anyone knows anything about Thunder Clap Headaches let me know, even the Physicians Assistant who did the initial exam on me today didn't know anything about them.

Title: Re: NEW TO CLUSTERS< NOT HAPPY
Post by TxBasslady on Mar 16^th, 2005, 2:29am

Welcome to the board.

I've never heard of these headaches...

However, I did use the google search and it looks as if these can be pretty serious. Sounds like your doc ran the correct tests to rule out the serious stuff.

Keep us posted...let us know how you're getting along.

I'm retired from Law Enforcement.....I didn't get CH till 8 years after retirement. Know what you mean by walking the cell blocks....for sure you can't afford to be in a drug induced state.

PF vibes and good luck!

Jean

Title: Re: NEW TO CLUSTERS< NOT HAPPY
Post by Fudge on Mar 16^th, 2005, 11:57am

Be Happy, you've had a long time without the ch's, im 16 an i've been having them for 3 yrs already. Also, would anyone else describe theirs as High pitched or is that one just me? Got to say, most doctors are decidedly lacking in the knowledge department when it comes to these things, i've been from muscle spasms to hormones to migraines and back, no use whatsoever! :-*

Title: Re: NEW TO CLUSTERS< NOT HAPPY
Post by jailcop on Mar 16^th, 2005, 2:15pm

Started my blood pressure meds today and also 500mg Naproxin. The MRI/MRA are set for the end of next week. No real head pain so far today but the back of my neck is getting stiff so one may be on it's way. It's back to work day tomorrow so I hope I feel better than this or the inmates will suffer.

Title: Re: NEW TO CLUSTERS< NOT HAPPY
Post by tom222 on Mar 17^th, 2005, 3:59pm

Its been three days for me now without this beast waking me in the middle of the night. Hopefully the Prednisone kills the cycle again, thank god for trex though, nothing seems to help me quicker than imitrex. Hopefully I have fallen to the floor for the last time this cycle squeezing my head like I was trying to break a walnut.

Title: Re: NEW TO CLUSTERS< NOT HAPPY
Post by jailcop on Mar 17^th, 2005, 7:49pm

I have had nothing for 5 days now, how can something that hurts so bad just go away......Can't wait for the MRI.

Title: Re: NEW TO CLUSTERS< NOT HAPPY
Post by TonyG1 on Mar 17^th, 2005, 11:10pm

on 03/17/05 at 19:49:07, jailcop wrote:

I have had nothing for 5 days now, how can something that hurts so bad just go away......Can't wait for the MRI.

I had an MRA & MRI today (for my own peace of mind) .. follow-up with Neuro in Early April ... until then I'm presuming no news is good news ... I can tell (even with verapamil being a factor) I think I'm finally out of cycle... no more shadows !!! ;;D

I wish you & all others on the board well and many PFDANs !!!

T.

Title: Re: NEW TO CLUSTERS< NOT HAPPY
Post by jailcop on Mar 18^th, 2005, 5:02pm

I wish you & all others on the board well and many PFDANs !!!
Since I'm new to this board what does PFDAN's mean. I'm guessing Pain Free Days And Nights ????

Title: Re: NEW TO CLUSTERS< NOT HAPPY
Post by jokrs2 on Mar 18^th, 2005, 7:00pm

Jailcop absolutely right PFD&N's to you

Title: Re: NEW TO CLUSTERS< NOT HAPPY
Post by jokrs2 on Mar 18^th, 2005, 7:03pm

Congrats TonyG1. GREAT to hear! Praying for you and your success with being PF. Blessings, Joe

Title: Re: NEW TO CLUSTERS< NOT HAPPY
Post by Jonny on Mar 18^th, 2005, 7:25pm

on 03/16/05 at 11:57:09, Fudge wrote:

Be Happy, you've had a long time without the ch's, im 16 an i've been having them for 3 yrs already.

Ive had them "Chronic" for 30 years......count yourself HAPPY!

Title: Re: NEW TO CLUSTERS< NOT HAPPY
Post by jailcop on Mar 30^th, 2005, 10:33pm

Well the results are in, I had my MRI/MRA and they found nothing, everything is normal. So the thunder clap headaches I mentioned in my first post NEW TO CLUSTERS>NOT HAPPY are of unknown origin. I have a follow up next week to discuss the options but there really are none. As my doctor told me I may never get another HA or I could get one now, there is no way to tell. I want to find out if there is anything I can carry with me to help abort the pain if it hit me at a bad time. If I'm home I can take the Vicoden and just wait it out since the generally seem to only last and hour or 2. But I am an avid motorcycle rider and golfer and If I'm 200 miles from home I need something to kill the pain quick. I've been basically pain free for almost 2 weeks now, I've had a couple of rumbles of pain in the temple but nothing to warrant anything more than a few Tylenol but I always get nervous that another thunder clap is coming. As I have mentioned before they go from 0 to full on agony in 2 minutes or less. Well I'll keep to posted on what the Dr tells me next week. Thanks to all you wonderful caring people for all the great help and information you have provided me....