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        Cluster Headache Help and Support >> Cluster Headache Specific >> is anyone else out there like me?
        
(Message started by: debbie on Jan 4^th, 2008, 12:47am)

Title: is anyone else out there like me?
Post by debbie on Jan 4^th, 2008, 12:47am

I was just diagnoised Dec 26th by my neurologist. He told me I have cluster headaches. For the last 7 years I've been taking buckloads of antibiotics for sinus infections. From the last week of August until the beginning of March I suffer from chronic pain.

It begins slowly, three days on, three days off. then four days on three days off. By November I don't have any days off. The doc says I'm cluster because I have the pain the same time every year.

On the kip scale, for weeks I never experience anything below a 3. I don't feel like pacing with my worst pain. I don't feel like hitting myself in the head with the worst pain. I want to take hot showers and get hot steam and hot water on my face and cheeks. My pain does not happen on one side on my face. My teeth hurt, my sinuses hurt, my eyes hurt. The light hurts, some sound hurts. I'm nauseated, but I've never thrown up. When I wake up at night it's always at 2-3:00 and I never get back to sleep. The monster lasts for hours not for minutes. I have layers of headaches.

Yesterday I had an oxygen treatment and it releaved several layers of pain and took me down to a 4 on the kip scale and I was happy. I left the urgent care center without dark glasses on. The doc is going to prescribe oxygen for me here at home.

January will be pain every day, but things will begin to break up in Feburary and I will only have a few episodes in March. Spring will bring new life and I will forget the pain and become a normal person and live a normal life during the spring and summer months and I will even forget the pain with the exception of a couple of short three day episodes. Is anyone else out there like me? Cause all I'm reading about cluster headaches is very different from what I'm experiencing. [smiley=huh.gif]

Title: Re: is anyone else out there like me?
Post by Kevin_M on Jan 4^th, 2008, 6:58am

on 01/04/08 at 00:47:26, debbie wrote:

I was just diagnoised Dec 26th by my neurologist.

Yesterday I had an oxygen treatment and it releaved several layers of pain and took me down to a 4 on the kip scale and I was happy. I left the urgent care center without dark glasses on. The doc is going to prescribe oxygen for me here at home.

What was prescribed for you Dec 26th? Yesterday urgent care, oxygen given, which relieved some pain. How was it administered and what is written on the script for oxygen now?

Title: Re: is anyone else out there like me?
Post by Bob P on Jan 4^th, 2008, 7:00am

Cluster headache is strictly unilateral (one side of the head). If yours isn't one sided, you don't have clusters.

Ask your doc to refer you to a neurologist and get a diagnosis from him/her.

Title: Re: is anyone else out there like me?
Post by Kevin_M on Jan 4^th, 2008, 7:11am

on 01/04/08 at 07:00:59, Bob P wrote:

Cluster headache is strictly unilateral (one side of the head). If yours isn't one sided, you don't have clusters.

Ask your doc to refer you to a neurologist and get a diagnosis from him/her.

on 01/04/08 at 00:47:26, debbie wrote:

I was just diagnoised Dec 26th by my neurologist.

My pain does not happen on one side on my face.

I have layers of headaches

This seems to be a neurologist's opinion already. Don't know how it's being treated yet but I might seek a second opinion for more mixed headaches possibly.

Title: Re: is anyone else out there like me?
Post by brewcrew on Jan 4^th, 2008, 7:35am

Quote:

My pain does not happen on one side on my face.

CH is always unilateral. It can switch sides in rare cases, but never both sides at once.

Quote:

The monster lasts for hours not for minutes.

Not unheard of, but with proper treatment a CH can be aborted in as little as 10 minutes.

Quote:

I left the urgent care center without dark glasses on.

Photosensitivity is not usually thought of as a trait of CH.

Doesn't sound like CH to me, but I'm not a neurologist specializing in headache pain. You need to see one of those. There is such a thing as "cluster migraines," where the symptoms are those of migraine but they occur in clusters.

Title: Re: is anyone else out there like me?
Post by Charlotte on Jan 4^th, 2008, 8:49am

I have some similarities, and my current diagnosis is based on guesswork and elimination by my neuro and is similar to "chronic atypical ch, possible paroxysmal hemicrania, SUNCT, with complications from occipital nerve" - and my neurologist has been chipping away for for 16 months and I am doing well at the moment. I also get migraines but they are not in the diagnosis and would usually accompany the peak of the mini-cycles of the chronic ch.

If it is not one sided, where does it occur? temple, back of head, center front, eye/cheek/chin, switch back & forth?

May I take apart "I have layers of headaches." This may actually be different types of TACs.

1. Is there any pain free time in between changes in pain?

2. Are the layers in different areas of the head?

3. Can you sit still or must you move?

4. Do some types of pain (occurring simultaneously) last different periods of time - like seconds, 10 minutes, 20 minutes, 45 minutes, 3 hours? - with breaks in between that kind of pain and how long do those breaks last?)

5. Does the main pain hit suddenly, or build up in stages?

6. Do you get warning signs such as tingles in chin, upper lip, eyebrow?

7. Where do the different layers begin on your head or body?

8. Does one pain start in back on one side, go to temple, and behind eye orbit, and switch back and forth, each for 20 minutes or less, sometimes for hours?

9. Does one layer of pain start in front and continue in jabs and jolts?

You may want to do a search for TAC SUNCT and/or occipital nerve etiology. Indomethacin works for several of these, dosage needs to be found that works, but SUNCT is notoriously hard to treat.

Verapamil and prednisone tapers are frequently prescribed and very helpful for ch, and also helpful for the occipital nerve complications.

I also use energy drinks, which you would need to talk to your doc, neuro, or pharmacist about if you also use verapamil because of the ingredient Taurine which is helpful to ch.

And you might want to read about kudzu, which not only helped with my ch for 14 months but also helped with migraine - before it stopped working.

You may want to have a friend time some of the different types of pain for you as they occur and change as I have found my perception of time is not accurate during hits.

Lizzie - Alien Space Babe - timed me, and thank you, Lizzie - I love you and appreciate you very much!

Good luck to you, and hang in there.

Charlotte

Title: Re: is anyone else out there like me?
Post by rocketman3104 on Jan 4^th, 2008, 9:06am

I agree, Don't sound like Cluster Headaches to me. Than again I too, am not a doctor, but have fought these for alot of years. Sound alot like Migraines, possibly caused by/or aggravating your sinuses.

My right eye is my monsters punching bag of choice. Cluster Headaches are one sided and I don't think mine have ever switched sides in 15 years.

Make sure you tell your Neuro that the pain isn't on just one side. That may make him re-consider his diagnosis (if he's done his home work). Clusters are usally always unilateral. You want the best possible treatment whether it's Clusters or Migraines.

Hope their not Clusters (for your sake), but welome to the family anyways. Lots of good information and people here.

Title: Re: is anyone else out there like me?
Post by nani on Jan 4^th, 2008, 1:50pm

Hi debbie.
I'm sensitive to light and sounds, so it's not unheard of...just rare.
I will reiterate about one sided pain. It doesn't have to hurt on the whole of one side, it can just hurt in the eye and temple... but it does have to hurt on just one side.
You may want to start keeping a headache diary and be very descriptive about your pain. ie: time of day, duration, location and intensity. Go over it with your neuro next time you see him.

Good luck and pain free wishes, nani

Title: Re: is anyone else out there like me?
Post by lionsound on Jan 4^th, 2008, 3:04pm

on 01/04/08 at 13:50:48, nani wrote:

You may want to start keeping a headache diary and be very descriptive about your pain. ie: time of day, duration, location and intensity. Go over it with your neuro next time you see him.

Hi Debbie,
Sorry you are in a lot of pain/
I recommend a headache diary as well.
I get 5 kinds of headaches, there's a party in my noggin, and they can get layered on top of each other.
It sounds like you've got a bunch of different kinds of headache going on at once and clusters may be one of them. You need a good headache specialist to help you figure this out. Not every neurologist is a headache specialist so make sure you find someone who knows how to help you.

Be well and Pain free

Title: Re: is anyone else out there like me?
Post by debbie on Jan 4^th, 2008, 3:49pm

thanks for your concern and replies. A couple of things you need to know about me, first I'm not real computer savy, and second, it's hard for me to be 100% coherent because I'm pretty much always in pain. So bear with me and I'll do the best I can.

Kevin--I was first prescribed by an ENT that I was not having sinus infections the first of December and he gave me topomax and imetrex. I'm up to 50mg of topomax twice a day now and out of 10 pills of imetrex I got them to work 3 times, the rest were failures. The neurologist prescribed me some zomig nasal spray because I went through the imetrex in a week and the insurance says I can only have 10 headaches a month. the nasal works much better, I've slayed two monsters with with those already. The O2--100% o@ at 5-7 liters in facial mask for 30 minutes. At first it did nothing, but after she turned it up twice it began to work. However, it did not take all the pain away.

Bob, Kevin, brewcrewand rocketman--this is my concern too--my pain never has been unilateral. My pain centers in the center of my face. My teeth feel like I need root canals in every single tooth. Both my eyes hurt. I've never had pain in only one side. I see my doctor the first week in Feb and I'll tell him this.

Charlotte--
1. the only time I am free of pain is at the beginning and the ending of the cycle which are the months of september, beginning of october, february and end of march, then the spring and summer months. I have not been free of pain since half way through october. There are always shadows of pain. sometimes I can take vicitin and it masks some of the pain.

2. the layers are like an onion. they build on top of each other starting at my nose.

3. when I'm at my worst I must sit still. the pain is paralyzing. I don't want to move my eyes or even my little finger or my little toes. I want to move when I feel stuff comimg on. I want to walkt it away, run it away, what ever I gotta do, but what happens is that it comes anyway, and I find myself in trouble, because I'm out somewhere and I can't get home.

4. I don't get short types of pain.

5. I get two types of pain. the "migraine"--stimulated my perfume--comes in a matter of seconds--the imetrex works well if I can catch it, but I've only had imetrex for a month. this migraines lasts a good 3 days and it's a paralyzing pain. I lay on my back and don't move. try to sleep-- it's the only way I can be rid of pain. I also get these from certain sounds, but mostly from chemically induced smells.

the second pain "sinus infection" or "cluster headach" comes slowly like the flu. difficult to catch. it's pulsating. it's like a ride on an amusment park and I can't get off. it varies in intensity, layers on top of each other. it's the one I'm not understanding. it wakes me up at night. it's the demon that wants to eat me alive. it's the one I try not to wake up when its sleeping. It's the one I battle.

6. I get warning signs for the migraines--tingling on the roof of my mouth and my teeth.

for the beast, as best as I can figure, sensitivity to light, fever in my cheeks, incoherent conversation.

7. the different layers begin always in on my face. My body feels exhaustion and flu like symptions just because I'm tired.

8. My pain always starts on the front of my face. I don't ever get pain in the back of my head. I don't ever get anything for 20 minutes or less.

9. I never get jabs and jolts.

Hope this helps, these questions actually really helped me I'm going to copy this out and take it to my doc. I had some blood work done yesterday and I'll get an MRI done as well. I'll also research this other stuff you mentioned as well charlotte.

thanks everyone for your imput. It's given me some more stuff to research. I'm still looking for anyone who is like me.

Title: Re: is anyone else out there like me?
Post by Kevin_M on Jan 4^th, 2008, 11:11pm

Hi Debbie, thank you for getting back with some information. I'm familiar only with clusters, which have unilateral pain.

If clusters are involved in your mix, then,

on 01/04/08 at 15:49:45, debbie wrote:

out of 10 pills of imetrex I got them to work 3 times, the rest were failures. The neurologist prescribed me some zomig nasal spray because I went through the imetrex in a week and the insurance says I can only have 10 headaches a month. the nasal works much better, I've slayed two monsters with with those already. The O2--100% o@ at 5-7 liters in facial mask for 30 minutes. At first it did nothing, but after she turned it up twice it began to work. However, it did not take all the pain away.

The Imitrex pills have been pretty ineffective with clusters, Zomig nasal spray is more appropriate. Your results show that.
Oxygen use for clusters is more effective at 12-15Lpm. The nurse turning it up twice may have attained this level but if well under way, it can be difficult get full relief, moreless just stops the accelerating and some subsiding only.

There seems a lot to figure out here and some at this site I see have experience with combinational headaches, which takes patience to work through to treat properly with a headache specialist. I'm sure guidance through this can would be available from some here.

:)

Title: Re: is anyone else out there like me?
Post by Chappy on Jan 5^th, 2008, 12:12am

Debbie,

I have to agree that your description is 98% non-cluster, which you should take as a good thing. The fact that it comes seasonally, and wakes you up at night are the two cluster-like features, but your neuro shouldn't have focused on those over the fact that there are many other features required for a cluster diagnosis.

First, I strongly suggest you visit http://ihs-classification.org/. Click on Primary Headaches, and read through everything you can. Start with migraines. If anything sounds familiar, print it and take it to your neuro. You don't have many months left in this cycle, so if this neuro isn't a "happy nice helpful cooperative" type, quickly find another QUICKLY.

Title: Re: is anyone else out there like me?
Post by Chappy on Jan 5^th, 2008, 12:20am

Debbie,

Don't leave us because you may not be a clusterhead. The people here are awesome, and were happy to help talk you through this until you get a final diagnosis. If noone else is, I am, because I waited 7 years to be diagnosed.

Many of the drugs you'll try are the same that people here have tried, and I know they'll be happy to offer advice as they already have.

Please continue to update us!

Title: Re: is anyone else out there like me?
Post by swimchica623 on Jan 5^th, 2008, 4:03pm

I have to agree with the other posters, you description does not sound like clusters. To me, it sounds like it might be a mix, maybe some sort of migraine? Migraines can come in several forms, or mixed in with another headache. I get plain migraines, clusters, and sometimes nasty hybrids with symptoms of both (even conflicting ones...like the migraine saying sit still and if you move I'll make you throw up, and the cluster saying this hurts so bad you MUST move NOW!). I'd question your doctors diagnosis, on the grounds of the time length, and lack of droopy eye, restlessness, eye tearing, stuffiness, runny nose, and other things other posters have mentioned.
Hope you find releif soon!
Lisa

Title: Re: is anyone else out there like me?
Post by debbie on Jan 8^th, 2008, 2:30pm

you guys have given me a lot to think about. I have started a journal. it looks like I have about 3 flare ups a day. I still don't believe they are unilateral, but what about this, i'm finding that about 20 minutes before I get substantial pain my right hand tingles like it went to sleep. sometimes that will also happen in my feet as well. And sometimes that happens after the pain--not only before the pain.

I have oxygen at home now. the dial only goes up to an 8. some of you talk about a mask. I don't like this thing that goes in my nose. the rush of air hurts my nose--remember a lot of my pain centers in my sinuses, the oxygen helps relax me a lot. where do I get a mask at and what do I look for? you talk about upping the air flow, but right now too much air flow rushing up my nose makes it feel like someone socked me in the nose.

I know these headaches are called suicidal headaches, i don't feel suicidal, but I do feel like I'm disapearing. I really need some pain free time. I've got to have something to do.

I get an MRI today. I have figured out that flourescent lights kill me--they trigger the migraine, headache, monster--whatever it is. I am figuring things out. thanks for the help. I am reading the stuff you guys write to each other, I'm on the web reading everything I can, I'm reading what you tell me too, I'm journaling.

thanks

Title: Re: is anyone else out there like me?
Post by debbie on Jan 8^th, 2008, 10:05pm

I just figured out the pain I have that won't go away--it's shadows. I have shadows. I have lots and lots of shadows. so how do I get the caffine? I don't drink coffee. the topomax I'm taking absolutely turns me off all carbonated drinks. I've been taking those diet pills that have caffine in them, but I don't notice any difference except now I really don't want to eat anything. if i can get rid of the shadows I can have some pain free time right? all i have to do is get rid of the shadows? help me get rid of the shadows!

Title: Re: is anyone else out there like me?
Post by BarbaraD on Jan 9^th, 2008, 8:31am

First of all -- take ALL the topamax BEFORE bedtime (it works better and you don't get the side effects).

Go to a medical supply place and get a NON REBREATHER MASK for your O2 -- the nose thingy DOES NOT WORK at all and is useless!!!!!

Caffeine -- coffee -- Red Bull (open a can - leave it in the fridge until you need it -- it will go flat and you'll not have the carbonation - then chug-a-lug it). They also make caffeine pills (health food stores) and taurine caps (same place). Pop some of them at first sign of headache.

Let us know what happens..

Hugs BD

Title: Re: is anyone else out there like me?
Post by debbie on Jan 9^th, 2008, 6:53pm

you guys are so great. thanks for all the imput, not just the direct answers you give me, but I read everything. I told my husband about the shadows yesterday, and he took off last night and didn't come home until he found me some caffine. he brought me home "extreme energy." It's lots of caffine in a little bottle. I took it first thing this morning and no kidding the shadows shrunk considerable within minutes. I got a little jittery, but really, I've had a pretty good day. I got hit twice with headaches, but they were like a 5-6 on the kip scale. I really feel good. He also ordered the masks on the internet on the site someone gave to the labodomy girl. All the information you guys gave to her was a godsend to me. thanks to all--your a lifeline to me.

Title: Re: is anyone else out there like me?
Post by debbie on Jan 10^th, 2008, 10:22pm

gotta vent. yesterday was a great day, today was hell. what did I do to deserve this. I got hit every two hours today. the first one was bad the second worse the fourth a screamer I couldn't get the oxygen to work and had to use a zomig. the fifth I was hyperventlating so bad I didn't think I'd be able to breath the oxygen through my nose, now it's only one hour later and i'm back on the oxygen. I took that stupid energy twice that seemed to work so well yesterday and it did nothing for me today. I'm so angry and exhausted. I was going to sew with my friends today, and I couldn't go. a month ago I never even heard of cluster headaches, two weeks ago I didn't believe in my diagnosis, and today I'm angry as hell.

Title: Re: is anyone else out there like me?
Post by Melissa on Jan 10^th, 2008, 10:29pm

on 01/10/08 at 22:22:03, debbie wrote:

gotta vent. yesterday was a great day, today was hell. the fifth I was hyperventlating so bad I didn't think I'd be able to breath the oxygen through my nose

I'd skip the nose cannulas entirely and suck directly through the tube until you can get a regulator that goes up to 15lpm + a non rebreathable mask.

Sorry for the multiple attacks, but hang in there!

Title: Re: is anyone else out there like me?
Post by debbie on Jan 10^th, 2008, 10:52pm

yea, ordered the masks waiting for them to get here. and I'll ask the doc for a higher oxygen tomorrow. I hate using the zomig up. I watched the video on those masks and it looks complicated. I hope I can figure out how to use them when them come,. cause I'm, pretty useless when I get hit.

Title: Re: is anyone else out there like me?
Post by rocketman3104 on Jan 11^th, 2008, 9:27am

Debbie. One thing you might try is DEEP, Rapid breathing until you can get a non rebreather mask.

Put the O2 hose end in your hands and cup your hands around your nose and mouth. Take in a deep breath and exhale outside your cupped hands. Cup back around your nose and mouth and repeat. Try this in Deep rapid breaths. Not shallow rapid (hyper-ventilating), but rapid deep breaths in kind of a rythym. This used to help me. Hope it will you, untill you get the right set up.

You want to try and get all O2 and no room air when you do that, crank up the regulator and try not to breath your exhaled air.

Title: Re: is anyone else out there like me?
Post by debbie on Jan 11^th, 2008, 10:14am

thanks, I decided I needed to practice some of this stuff when I have my head together. I couldn't even change my tank yesterday, if my son wasn't here I don't know what I would have done.

Title: Re: is anyone else out there like me?
Post by DennisM1045 on Jan 11^th, 2008, 2:56pm

Hi Debbie,

I really doubt that 8lpm O2 is going to help much. Certainly the nose canula isn't helping either. For now, sucking O2 right out of the hose sound like the best you can do.

There is evidence that cold air can help. Try some cold air in the freezer or put your face right up to your car air conditioner on high. Take in huge gulps of it.

If the Dr can perscribe 12lpm the O2 supplier will have to give you a valve that goest to 15lpm because they don't make a 12lpm valve.

Hang in there. I hope you get a break soon.

-Dennis-

Title: Re: is anyone else out there like me?
Post by debbie on Jan 11^th, 2008, 10:44pm

so i got my masks today, I practiced, I can see why the 8 isn't going to work, it doesn't fill the bag up fast enough. I don't think I can get anything changed until monday, cause I gotta get a hold of the doc dont I? i can tell a huge difference with the mask. so far the o2 has never completely aborted all the pain, it's just relaxed and calmed me down, hopefully if I can get a higher number this will work. the day was better, feel like i'm climbing out of dante's hell

Title: Re: is anyone else out there like me?
Post by Jonny on Jan 11^th, 2008, 11:05pm

Get diagnosed!

Title: Re: is anyone else out there like me?
Post by debbie on Jan 13^th, 2008, 1:07am

lol, thats what started all this isn't it?

I'll leave you all alone for the last weeks of this cycle of mine. For those of you following this story, I'll end it this way, I go back to the doc in three weeks. the meds i'm on and the help you've given me have enabled me to have some pain free time between headaches. I've learned how to abort a headache and get rid of the shadows (the things I called layers of pain).

I have had a lot of side effects from the topomax--tingling in my hands and feet, anger, disorientation, and anxiousness-I learned this from reading your comments and threads. I didn't know I was having side effects from the medication, I thought I was going crazy. I decided from the things I learned from you, that I'll stay on the topomax until I talk to the doctor and let him begin to prescribe the correct coctail for me. Knowlege is power and I can live with that. thanks for your patience and care. I'll introduce myself in the spring when my head is clear and i'm myself again.

debbie

Title: Re: is anyone else out there like me?
Post by Callico on Jan 15^th, 2008, 10:28pm

Don't go away! You are not bothering us. If nothing else you need an outlet to help you think things through. you will rarely have anyone react badly to honest questions or concerns. There are a lot of people here who are here only to help others. Some are those who's CH has been gone for years, but still hang around to support the rest of us. There are even a couple who have never had CH who are here to support, and a couple who were married to sufferers who have divorced and still are here for the rest of us. All I'm saying is that this board has allowed us an outlet not only for our own need, but has also allowed us to reach out and help others. You have been given some great advice and help, so don't feel like you have to leave just because you don't have a handle on things yet.

Hope you get some relief soon. Keep taking one day at the time, and don't borrow from tomorrow's grief, or disregard todays good moments for anticipation of tomorrows better times.

Jerry