Author |
Topic: New Clusterhead with questions (Read 672 times) |
|
Phil the Desert Rat
New Board Newbie
Gender: 
Posts: 30
|
 |
New Clusterhead with questions
« on: Jan 13th, 2006, 8:40pm » |
 Quote  Modify
|
Hey, all.
First, thanks for this site.
On January 1, 2006, at 1:30 in the afternoon, I joined your ranks. Never before having a history of headaches, I was terrified by what I can only describe as imminent death. I went from normal me to abject misery in about 5 minutes, terrified and bewildered by pain so utterly raw and intense that I was certain I had popped an aneurism in my head. Then, nearly two hours into it, it dissipated even quicker than it began. That first day, I had another in the early evening, and yet another woke me from my sleep. Since Jan 1, I get the early afternoon one dependably, the nightly one somewhat regularly (early morning, 3 a.m.), while the third one tends to lurk and strike out of the blue randomly. Mine begin over my right eye, and within 3 minutes, my entire head and neck are in excruciating hell. I feel as if I have rebar jammed up through both eyeballs and into the roof of both eye sockets, and as if I am being stabbed repeatedly through the top of my skull with ice-cold daggers. My forehead turns red, and to the touch I feel as if I am running a high fever, though I am not. While I don't experience a stuffy nose, my eyes both tear, and my right eye is half closed by the end of it all. The best relief I have found thus far is to firmly, rythmically bang my head into either a wall or the floor until it finally breaks.
I have missed nearly two weeks of work now, and have been gripped with shame, fear, and bewilderment when confronted with the thought of somehow explaining this to my employer. To that end, thank you for posting the "Letter to Employers..." on this site.
I have been diagnosed three times now by three different doctors, all of them telling me that I am experiencing cluster headaches. The first was in the ER, after a CT scan...he sent me home with Vicadin (which I now know from experience and from reading here that narcotics do NOTHING for these). The second came yesterday morning from my GP--she prescribed Verapamil (120 mg/day) and Ergotamine (one as soon as I feel a CH coming on, and one every 1/2 hour thereafter until CH abates). The third came from an ENT in the afternoon...he just wished me luck.
Today, I spoke to my HR director about FMLA paperwork. He asked me what was going on. I explained. And you know what? He responded, "Oh, Jesus, I am sorry to hear that. My sister suffers from those. I can't say that I know what you're feeling, but I DO know how debilitating they are..." In a nutshell, I am not to worry about my position, which is a huge relief.
So now I just continue to ride this first episode out, hoping that I will fall into the 2-week cluster, 3+ year remission category. Anything less than this would be just about unbearable. I am really scared about what this condition might portend for the rest of my life.
My questions:
1. Is it normal, after several days of these, to have a constant "low-grade" headache between CHs?
2. Is it normal for the whole front of my head (skin, hair, and eye muscles/nerves) to feel like a million exposed nerves even between CHs?
3. From your experiences, is 120 mg Verapamil/day to small a dose (a pharmacologist friend of my partner suggested nearly triple to quad this dosage, if I understood him correctly)? Additionally, is it better to chew up the Ergoatamine tabs and ram the pulp under my tongue (I don't quite get the sense of taking a pill with a coating on it that will take 45 minutes to dissolve in my guts and work its way through my system, when the need is utterly immediate)?
4. Is short-term memory blur and/or loss normal?
5. Is there anyone else on here whose CH odyssey began coincidentally with a sinus infection?
6. Finally, I am seeing a neurologist next Thursday, who specializes in migraines and CHs. Are there any questions I as a newbie should be prepared to ask?
Thanks in advance to any of you who have read this far, and even more thanks to any responses.
--Phil
|
|
 IP Logged |
|
|
|
burnt-toast
New Board Hall of Famer
Gender:
Posts: 1686
|
|
Re: New Clusterhead with questions
« Reply #1 on: Jan 13th, 2006, 9:08pm » |
Quote Modify
|
My questions:
1. Is it normal, after several days of these, to have a constant "low-grade" headache between CHs?
I don't have any pain between attacks but others might.
2. Is it normal for the whole front of my head (skin, hair, and eye muscles/nerves) to feel like a million exposed nerves even between CHs?
Yes, my hypersensativity lasts until about noon each day following attacks.
3. From your experiences, is 120 mg Verapamil/day to small a dose (a pharmacologist friend of my partner suggested nearly triple to quad this dosage, if I understood him correctly)? Additionally, is it better to chew up the Ergoatamine tabs and ram the pulp under my tongue (I don't quite get the sense of taking a pill with a coating on it that will take 45 minutes to dissolve in my guts and work its way through my system, when the need is utterly immediate)?
I'm at 720mg Verapamil daily combined with 1200mg Lithium Carbonate and 9mg Melatonin 30 - 45 min. before bed. Here are links that will help you better understand meds./dosages.
http://www.nlm.nih.gov/medlineplus/druginformation.html
http://www.drugs.com/
4. Is short-term memory blur and/or loss normal?
Memory issues definitely associated with sleep deprivation.
5. Is there anyone else on here whose CH odyssey began coincidentally with a sinus infection?
No - one day out of the blue while on an airplane - thought I was going to die.
6. Finally, I am seeing a neurologist next Thursday, who specializes in migraines and CHs. Are there any questions I as a newbie should be prepared to ask?
The first question is how many CH paitents the doc. has treated - being a rare disease it's not uncommon for docs. to have no experience with CH patients.
From there you're going to need to do some homework and prep. your questions. The following links should help and there a wealth of information on the site. Some google searches and such will help as well. Knowledge is your best weapon when attempting to find out how knowledgeable your doc. is and finding relief.
If you're not keeping a headache journal - start keeping one determinining your cyles and finding consistent treatments will require work and something better than your memory each time you visit the doc.
http://www.emedicinehealth.com/articles/9362-6.asp
http://www.aafp.org/afp/20050215/717.html
Best wishes on your journey. Let us know how it goes.
Tom
|
|
IP Logged |
Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space.
|
|
|
Karla
CH.com Alumnus
New Board Hall of Famer
One of Many and Never Alone - Join OUCH
 
Gender: 
Posts: 3090
|
|
Re: New Clusterhead with questions
« Reply #2 on: Jan 13th, 2006, 9:13pm » |
Quote Modify
|
1. Is it normal, after several days of these, to have a constant "low-grade" headache between CHs? My ch last 1 1/2 hrs each at a level kip10. Then they reside to like a kip3-6 I call this a shadow. Its a low level ha. You should be able to do a search on "shadow" and come up with some good definitions from the archives.
2. Is it normal for the whole front of my head (skin, hair, and eye muscles/nerves) to feel like a million exposed nerves even between CHs? YES
3. From your experiences, is 120 mg Verapamil/day to small a dose (a pharmacologist friend of my partner suggested nearly triple to quad this dosage, if I understood him correctly)? I tried up to 960mg. which caused my heart to beat irregularly. lower doses didn't work for me so they took me off of it. Many people take this dose and do just fine on it tho.
Additionally, is it better to chew up the Ergoatamine tabs and ram the pulp under my tongue (I don't quite get the sense of taking a pill with a coating on it that will take 45 minutes to dissolve in my guts and work its way through my system, when the need is utterly immediate)? I have never used this product.
4. Is short-term memory blur and/or loss normal?YES
5. Is there anyone else on here whose CH odyssey began coincidentally with a sinus infection? NO. But was sent to ENT to rule out problems with siniuses.
6. Finally, I am seeing a neurologist next Thursday, who specializes in migraines and CHs. Are there any questions I as a newbie should be prepared to ask?
Read the oxygen info link to the left<==. Ask your dr for oxygen in a nonrebreather mask at 8-15 lpm. You will need a larger regulator for this high a flo rate. Breath for 15-20 min and ha will be gone. Works for most. It worked for 2 years for me and then quit working. Sucked big time. Ask about using IMitrix ns(20mg) or injection (see imitrix tip to left <==) It shows how to split a shot into 3 shots making it last longer at a lower dose. Good luck!
|
|
IP Logged |
Karla
suffer chronic ch
ch.com groupie since 1999
Proud Mom of Chris USMC Semper Fi
|
|
|
thebbz
CH.com Alumnus
New Board Hall of Famer
Ow,Ow,Ow
Gender:
Posts: 2181
|
|
Re: New Clusterhead with questions
« Reply #3 on: Jan 13th, 2006, 9:32pm » |
Quote Modify
|
Check out the links on the left. Take the quiz. Good luck with the neuro. The pain is more often than not one sided. That would really suck with the demon slammin both sides. Take the good advice of the previous posts.
All the best. Read read read. Riding out an episode is valiant at best I could never do that.
jb
|
|
IP Logged |
It wasn't me I didn't do it
|
|
|
FramCire
CH.com Alumnus
New Board Hall of Famer
Life like a froward child must be humored a little
Gender:
Posts: 847
|
|
Re: New Clusterhead with questions
« Reply #4 on: Jan 13th, 2006, 9:39pm » |
Quote Modify
|
Honestly the phrase "Is it normal" is such a tough one to answer. CH has so very few "normal" traits. Everyone seems to have diffeent experiences but chances are someone around here has had something like what you have.
As a 1st timer, congrats at finding this place (and using it early). Get O2!!!! Make sure your insurance covers it too!. I do want to reinforce reading the OXYGEN INFO tab on the left of this page. GET THE RIGHT MASK (or the clustermasx one that is a fave around here).
Anyway, I have found that I can set a clock to my HAs but the severity varies inside each cycle almost like subcycles and I can experience horrible pain levels even between HAs. the worst part is getting other HAs during an episode and not having any way to treat it.
Anyway, welcome aboard. I wish I had more to offer.
|
|
IP Logged |
You've overstayed your welcome since the day we met but it doesn't seem to matter to you. No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do
|
|
|
Phil the Desert Rat
New Board Newbie
Gender:
Posts: 30
|
|
Re: New Clusterhead with questions
« Reply #5 on: Jan 13th, 2006, 9:45pm » |
Quote Modify
|
thanks, all, for the replies thus far.
I was puzzled by the dual sided headache once it's in full-blown mode, asked my GP about it. She said that though CHs are usually one-sided, in some people (and unfortunately for me) at their peak, a CH will involve both sides of the head. Seems I lucked out (@*%$#@!!!). At peak, everything within a 12-inch radius of my brainstem is in full-blown nuclear fission mode, though it's my right eye that seems to take the brunt of it (red, droopy and weepy afterwards). The "rebar through the left eye-socket" is very real, though.
Also, now that I know these in-between HAs are "shadows," do the worsen throughout a cycle? Mine are. And my right eye is pretty much weepy throughout the day now as well. Two weeks into this, god I hope it ends soon.
--Phil
|
|
IP Logged |
|
|
|
Kris_in_SJ
New Board Hall of Famer
There's no place like home.
Gender:
Posts: 1539
|
|
Re: New Clusterhead with questions
« Reply #6 on: Jan 13th, 2006, 9:45pm » |
Quote Modify
|
Hi, and welcome.
You have great questions and they all deserve an answer. What you need to keep in mind, however, is that each and every one of us is different in our symptoms, as well as what works for us.
1. What your describe as a constant, between heahache pain is what most of us call "shadows." My entire first cycle was a 12 week shadow. It's like a cluster waiting to happen, or the beast reminding you it's not far away. Sometimes, a really strong coffee or expresso will help. If you've been prescribed oxygen, that might help, as well,
2. I'm sorry, but I've never heard of a cluster sufferer having pain in the middle. One side or the other - sometimes switchiing - but never in the middle.
3. I'm a true believer in Verapamil - if used in appropriate amounts. For me, that's never been below 480mg/day.
4. I believe it's very common to lose track of time during a cycle. For some reason, you only keep track of the time day - when is the hit going to come? I tracks weeks, rather than days.
5. Most of us would agree that we have had more sinus infections than we could count - if they were really sinus infections.
6. Please read the medical info to the left and take the cluster quiz. Take the printouts to your doc.
Good questions. Keep reading this weekend. Take it all with you to the doc. Also, follow any and all links regarding treatment and diagnosis.
Many hugs,
Kris
|
|
IP Logged |
I'm a small woman in small town being chased by a VERY BIG BEAST!
|
|
|
E-Double
CH.com Alumnus
New Board Hall of Famer
Are we ourselves?
 
Gender:
Posts: 6458
|
|
Re: New Clusterhead with questions
« Reply #7 on: Jan 13th, 2006, 9:55pm » |
Quote Modify
|
Both eyes at same time?
Or do they ping pong between attacks?
I ask this because CH is defined by strictly unilateral attack.
If it were just @ night which yours are not, the bilateral attack might suggest hypnic headache but the autonomic features suggest a TAC.
The other stuff is pretty consistent though.
I have no experience with Ergots. They are however a very old school medication. You may ask about triptans such as imitrex injection.
I have had pain in between attacks.
Your verapamil dosage is very low.
Memory is definitely shot.
You may want to ask for a trial of indomethacin. Many doctors will actually use a short trial to rule out CH.
It is also possible that you have multiple headache types which developed like you said literally out of the blue.
I am troubled though that you have been diagnosed by 3 different professionals with CH and not one has provided you oxygen.
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
you also may try melatonin to help you get through the night pain free. 6-12 mg. has helped many of us prevent night time attacks.
Whether it is true CH or a CH variant as there are out there, I sure hope you find relief.
Pain Sucks!!!!
Best to you,
Eric
|
|
IP Logged |
I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
|
|
|
BlueMeanie
CH.com Alumnus
New Board Hall of Famer
Gender:
Posts: 1178
|
|
Re: New Clusterhead with questions
« Reply #8 on: Jan 13th, 2006, 10:34pm » |
Quote Modify
|
Hi Phil and welcome to Clusterville.
Your headaches do sound much like CH's. Agree with the headache in the middle as others have said, but sometimes another type of headache can come about before, during, or after a Cluster according to some people.
As you will find out, everyone who has Clusters have different meds that work or don't work. It's kinda a trial and error thing. Hopefully prevents will work for you. You never mentioned Triptans. I've suffered for many years and no meds worked for me until I discovered Triptans. Imitrex shots are very fast acting and can usually rid a CH within 10 minutes allowing you to return to work or whatever it was you where doing prior to the attack. For me, it's the greatest invention ever made by man. If you have heart problems, unfortunately, you can't use them. Check with your doc.
Many Clusterheads swear by 02. Read the info to the left of this page. It is some pretty good stuff for aborting CH's.
There are different triggers. (things that not necessarily cause an attack, but bring them on prior to the normal time schedule). You will learn what your triggers are as time goes on. Alcohol should be avoided at all cost. You will learn pretty quick about that. Other triggers can be smells, food, smoke etc.
Hopefully you're episodic. If so, your CH's shouldn't last too long. I believe the avarage time for episodics is around 8 weeks or so, hang in there, you may be almost done with your cycle.
Good luck Phil.
|
|
IP Logged |
|
|
|
gobby
New Board Junior
I wish I had Migrains instead!
Gender:
Posts: 58
|
|
Re: New Clusterhead with questions
« Reply #9 on: Jan 14th, 2006, 1:59am » |
Quote Modify
|
Hey Phil,
Sorry to hear you're probably one of us now, but you are in the right place. I'm don't think anyone on the planet knows more about these god-awful things than these folks.
I'm not going to be much help other than to say "yes" to the low grade headache in between attacks. When I'm at the height of my cycle I get these. They,re not like clusters at all, just regular old headaches, and just painful enough to bother me. Sometimes 2 aspirin and a coke take care of those for me.
Sorry I couldn't have been more helpful.  But glad to see you found us early.
Best Pain Free Wishes 
Oh ya - My main trigger is alchohol and seems to be for many people. You may want to avoid it. I don't go near it at all when I'm in cycle.
|
| « Last Edit: Jan 14th, 2006, 2:02am by gobby » |
IP Logged |
Things that don't kill us only make us wish we were dead.
|
|
|
BarbaraD
CH.com Alumnus
New Board Hall of Famer
Hugs to ya
Gender:
Posts: 5164
|
|
Re: New Clusterhead with questions
« Reply #10 on: Jan 14th, 2006, 6:39am » |
Quote Modify
|
Phil,
Welcome to Clusterville. sorry you're here, but this is the place to come with CH.
Ergotomines (Cafergot) is what I use when I have to. There is a Cafergot PB supository that works faster than the pills, but make sure it's the PB one or you'll get awfully sick at your stomach. The cafergot works LONGER than the triptans, but is bad on your stomach. And there is the DHE-45 IV (about 3 days every 8 hours will sometimes end a cycle).
Most here favor the triptans, but as was said before - it can mess up your heart.
For the "shadows" you might try some strong black coffee. It constricts the blood vessels and will sometimes abort an oncoming CH.
Melatonin at night before bed (9-12mg) will "sometimes" get you some rest at night. I've found when you wake up at night - DO NOT TRY TO GO BACK TO SLEEP if you have any indication of a CH - get up immediately and get some coffee down. That will sometimes abort one for me and keep it from going full blown.
O2 is great - if your doc doesn't suggest it ASK for it. It works on so many of us. But get the RIGHT mask. And get the right regulator (15 LPM). A low regulator won't do any good at all. Read up on the O2 usage before you use it. As with all things - it can cause harm if used improperly.
Memory loss just goes with CH. Get some post it notes and live with it. Between the pain and the meds, you'll do good to finish sentences for a while.
Make sure your neuro LISTENS to you. Interview him/her. How many CH patients has he/she treated. What does he/she know about CH? Read the links on the left and go prepared.
The best advice any of us can give you is READ READ READ the links on the left and be prepared.
Again, sorry you had to find us, but we're here 24/7 and we DO know how you feel and what you're going thru.
Hugs BD
|
|
IP Logged |
What don't kill ya, Makes ya stonger!
|
|
|
marlinsfan
New Board Hall of Famer
I love this place!
Gender:
Posts: 876
|
|
Re: New Clusterhead with questions
« Reply #11 on: Jan 14th, 2006, 7:42am » |
Quote Modify
|
Phil, welcome. Others have answered your quetions, so I'll simply post the doc on treatments that you should read and bring to your doc:
http://www.brightok.net/~mnjday/chtherapy.pdf
Also, you're read it before, get Oxygen. Demand it. Don't leave the neuro's office without a script.
Watch what you eat. My triggers include alcohol, nuts, tomatoes, and aspartame. Coffee does me very good at killing attacks before they become full blown.
Melatonin is great for controlling your 3 am attacks.
PF wishes.
Jose
|
|
IP Logged |
|
|
|
Roxy
CH.com Alumnus
New Board Hall of Famer
Gender:
Posts: 2282
|
|
Re: New Clusterhead with questions
« Reply #12 on: Jan 14th, 2006, 10:02am » |
Quote Modify
|
Sorry that you've had to join the crowd. I woke up one day thinking I had an aneurysm also. Mine hasn't stopped since that day. Luckily you were diagnosed quickly, but get some 02 fast. Call your GP and see if she can get it arranged for you. Read the 02 page here and make sure you get all the right things (mask, regulator, etc).
I don't have pain too often between hits, but I know a lot of people do. I also don't have the hypersensitivity to the head, but I did at first. It may be just because all of your pain receptors are new to feeling this kind of pain. I think my memory loss is just due to age....  .
One thing I have learned, the banging of the head just makes it worse for me.....and I was a world class head banger. I now grab my 02 mask, while rocking back and forth (at home I use a rocking chair)....but I focus on breathing and visualize the pain leaving my head. I know if I start the pacing....crying....head smashing....I am screwed and the pain will get away from me.
If you want to try to get a nights sleep Nyquil, Benadryl, Dramamine will sometimes help you get through the night without a hit. You might be a little groggy in the morning though. Don't be disapointed if the melatonin doesn't work.....it lights me up something terrible, but it does help a lot of people.
If you're doctor will agree, you can try a pred taper to break your cycle. It works for most episodics also.
Have one of your doctors prescribe a triptan for you. I wouldn't suggest Imitrex, as it seems to cause more clusters. Zomig nasals work great, and will keep the ch's from coming back for close to 12 hours. You can also get some triptan pills (Relpax, Zomig, Frova, Amerge) which you can use as a preventative. I will take one before going to dinner, movies...whatever, and I know I'll not get hit. I try not to use them much, but it does make life somewhat normal.
Good luck, and keep us posted,
Roxy
|
|
IP Logged |
Only two things are infinite, the universe and human stupidity, and I'm not sure about the former. (Einstein)
I used to have a handle on life....but it broke.
|
|
|
Richr8
New Board Hall of Famer
It's all about today...
Gender:
Posts: 1396
|
|
My experience.
« Reply #13 on: Jan 15th, 2006, 1:33pm » |
Quote Modify
|
Phil,
Sorry to hear you have joined us. I am, I hope, coming off of my latest cycle, and just reading your story makes me cry. I guess really understanding makes a very profound connection, but there is hope. My first three cycles I went undiagnosed (this was my fourteenth year) and was prescribed various narcotics and sleeping aids to address the problem. This nearly drove me insane and I suffered greatly until I found a good neurologist. Now, with maintenance on Verapamil, intervention with Prednisone, and abortive measures with O2, my cycles are much shorter and less intense. If this one is done, as I think it is, we beat it in three weeks as opposed to 12 weesk in the early years. 60mg of Prednisone seems to do it for me. Now for some of your questions.
1. Is it normal, after several days of these, to have a constant "low-grade" headache between CHs? Definitely! If these get too annoying, 40 mg.of Relpax will get rid of them fro me although I try to limit it's use.
2. Definitely again.
3. I take 480mg of Verapamil even off cycle. I am not sure what it is doing for me. I have never taken ergotamine althugh Imitrex has worked and i know you want that dissolved instantly. The Prednisone seems to be what breaks my cycle. Again 60mg of Prednisone is the magic number for me.
4. What was that again?
5. Mine did. In 1992 I had a serious sinus infection that ended in my fist CH bout.
Here it is again. Get Oxygen! It work for me about 50% of the time right now. I just ordered the Clustermask set-up so hopefully that percentage will go up once I have that.
Again, sorry you are with us, but if you are where you are, you are at the best place to be. I miss a lot of work too, and don;t worry about it as much in year fourteen as I did in the beginning. CH is a disease over which we have no control, and we sure as heck earn the time.
Wishing you many PF moments and all the best,
Rich
|
|
IP Logged |
pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
|
|
|
CrazyDog
New Board Newbie
Gender:
Posts: 34
|
|
Re: New Clusterhead with questions
« Reply #14 on: Jan 15th, 2006, 7:33pm » |
Quote Modify
|
My understanding is that cluster headache diagnoses without history of cluster periods with remission should be treated cautiously.
Just to be safe and rule out other causes I would ask for an MRA (Magnetic Resonance Angiography), if they don’t want to do that then ask for an MRI.
If it takes its course like typical episodic CH upon first occurrence in a patients life do we know enough about the disease for Phil to predict what might happen with this first cycle?
|
|
IP Logged |
WaltD
http://www.waltdavis.net/crazydog-ch-profile.pdf
|
|
|
Phil the Desert Rat
New Board Newbie
Gender:
Posts: 30
|
|
Re: New Clusterhead with questions
« Reply #15 on: Jan 16th, 2006, 8:08am » |
Quote Modify
|
Thanks, Crazydog. My first round seemes to have broken yesterday. Not sure what this means, other than thankfully, this morning is the second morning in a row that I have awoken with zero pain. I do meet Thurs with a neuro, and will have more certainty with a diagnosis (hopefully). I do know that my CT scan was clear, though not sure what value a CT scan offers in CH diagnosis. I will ask about a MRA/MRI, though I suspect he will want that anyway. He deals with CHs, so that gives me some hope. Thanks again, and I'll keep you all posted on Thursday's results.
--Phil
|
|
IP Logged |
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss