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Re: Newbies. Help us...help you
Reply #75 - Oct 28^th, 2011 at 6:06pm

For Potter:
spiny wrote on Oct 28^th, 2011 at 3:06pm:

Good Afternoon all,

I am new here, but not to headaches.

They started in my 20's, with the standard diagnosis of Migraine. When I tried to explain that they lasted 1-3 hours, not 24 or more, I was ignored. I took lithium and Elavil (?) for two years, along with Demerol when I was loosing my mind with pain. Every trip to the ER, I had to agree to see a Neurologist because when they looked into my eye on the left side, the back was bulged forward. I had already had an EEG that showed an 'abnormality', but no Dr. could explain what it was or why I had it. Then, after 5 years they vanished.
Ten years ago, I started with a killer headache that told me exactly how many eyelashes and eyebrows I had on my left side. Once again, "You have Migraines." NOT!!! Imitrex (?) did not work. After two weeks, they vanished.

Then, I moved to the mountains, 3000 ft up. Not a problem for a year. Then, it started. 6-8 attacks a day, for months. My Dr. down below was lost (Migraines again), so I printed out a paper on CH. with my symptoms circled. He put me on Carbazamine (?) and Demerol pills for pain. That worked well for two years, except when I went off my mountain! Going down, never a problem. Coming up, I was in torture. Was advised to up the Carb to 1200mg max. I did, gradually. My salt tanked, everything I saw was triple vision.

Finally, I was referred to a Neurologist. That response was "Why didn't you come sooner?" This Dr. has helped. Verapamil (?) worked, but it caused Hyperplasia (tissue overgrowth of the gums), so I had to stop taking it. Next came Diltizem (?). Not nearly as effective, but controlled most random CH's and seemed to shorten the spring and fall sessions.

Now, they are back!!!! Attacking at 9:30, 12:00, and 3:00 at night. Needless to say, sleep is NOT happening when you get about 15 minutes sleep between cycles. I was put on Prednizone (?) blister pack. Worked great, till I got down to one a day, and back they came. Called the Dr. and begged to start another course and then a maintenance of two a day for two weeks. Nope, got Prozac instead. Well, being stubborn, I informed the receptionist that I was going to take 5 yesterday and then taper off with the supply of 30 for once a day. They were offended that I was taking the lead since their lead was not working. I slept all night!

At this point, I am willing to lose all my teeth (I think) just to end this pain and will revert to Verapmil (?).

Well, I don't really want to do that. Dr. said O2 was way to expensive and would not prescribe it. Now, this Dr. said that Clusters don't occur at night and I should sleep in a BArca-lounger!!!! Time to take this on myself and just pick up some pain meds 3-4 times a year.

I am trying caffeine and it seems to help with the 3:00am session, but not otherwise. However, I do have a gas welder in the basement and will try the O2 on the next one. Also, there is a dive shop about 100 miles away and they should be able to help me get the setup right without fighting Medicare and paying a fortune. I tried the O2 shop in town for a portable tank and mask, but was told I would have to have O2 scripted for 24/7 to get any portable unit.

I am in NC mountains, past 60, mother of three, and own a retail business. Dr.'s I have found are totally clueless. Current Neurologist is at his wits end and appears unwilling or unable to help. As I am talking to his receptionist, he is providing input in the background but not getting on the phone. His position is that I have so many allergies to meds that he has nothing else to offer but Prozac. I am married and the side effects will not be welcome in my bedroom.

Any ideas? Know anyone around here?

Guess I should post symptoms: Drilling into my left temple is a railroad spike that just came from a blacksmiths tongs. Someone has hooked up alternating current to my left eye which extends to the back of the optic nerve. I know every branch of my trigeminal nerve from the top of my head to my mandible and out my ear. That octapus (?) cannot be put back once he comes out - he is there for 2 hours. My metal headboard is bent, so now I hit the bathtub and run screaming hot water so I don't expose my husband to my wanting to rip my own head off. There I can sit for an hour and continually splash my face gently and cook the rest of me for distraction. Cold makes it worse, perhaps because of the violent nerve pain. I used to be able to lightly touch and stroke my pain back into my temple where it was managable, but no longer. I have had MRI's. MRA's and tests for other head issues, with no positive results. The only test that showed anything was the EEG years ago. The hospital where my Dr works is 1 hour away, so that is a 3 hour trip at night and not a viable option. The local hospital refuses to call my Neuro for guidance and gives a muscle relaxant saying that I am 'drug seeking'.

The pain is fast in hitting, excruciating, and repetative (?)
I am convinced that you guys are better at this than any Dr I have found in NC.

Big question: Anyone had their iris on the pain side change colors? Dr says it doesn't happen, but I found an article that says it can and does. The article was written by a specialist in iris color (didn't know there were specialists for iris's). Mine started turning much lighter 4 months ago. No glaucoma or lack of blood flow to the eye, so I get to go to a specialist for this now!

Sorry for all the spell errors, I just am racing the clock (wonder why) and could not take the time to correct. I hate drugs!!! At least the ones they have me on now. All shaky, stupid, tired, and hungry.

Thanks to all.

spiny

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Shane

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Re: Newbies. Help us...help you
Reply #76 - Oct 28^th, 2011 at 11:39pm

Hello everyone. Im Shane from Carrollton, GA USA. I just went through my third cycle since being diagnosed with CH although Id say it may have been going on before that but the doctors always blamed my sinuses. I guess Im lucky compared to some being my cycles are around 14 days with roughly a years remission between them. It seems each cycle the frequency of extremely intense headaches has increased with a new symptom this cycle. They would shift sides during some attacks. My left side was always the side before until the right side got a few this cycle. I must say the intensity is much greater when on the left but not saying the attacks on the right side wouldnt stop me in my tracks. Well treatments... I eat meds like candy to little effect a majority of times, hot baths where I put my head in the water seems to dull the edge most cases but its only temp relief. I did try the chiropractic treatment towards the end of this cycle. It ended three days afterwards but that was its normal schedule so I dont know the true effect. This time my life was severely hampered. I could not focus to work, go to my sons sporting games, or anything. I just tried to do all I could between the attack times but after so many headaches I got to all I wanted to do was rest between them. I dont know about everyone else but I have crazy thoughts during them... Sometimes I just think about removing my teeth, eye, etc... I wouldnt do it but it scares me to even have these thoughts cross my mind. Anyway Im open minded to hear others ideas on preventing these or at least reducing their pain.

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Re: Newbies. Help us...help you
Reply #77 - Oct 29^th, 2011 at 8:22am

Welcome to the board Shane. Are you working with a headache specialist neuro yet? We have seen the best results from doing so. There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis. I’ve had CH for 33 years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach:

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time. Given that your cycles only last 14 days, I'd want to ask my neuro about using just prednisone on one of the cycles, see if you can knock it out with just that.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers. As you've probably already figured out, the pain meds don't touch CH, the potential for abuse and side effects tend o far outweigh the minimal relief they provide.

For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe

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Shane

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Re: Newbies. Help us...help you
Reply #78 - Oct 29^th, 2011 at 10:04am

Guiseppi wrote on Oct 29^th, 2011 at 8:22am:

Welcome to the board Shane. Are you working with a headache specialist neuro yet? We have seen the best results from doing so. There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis. I’ve had CH for 33 years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach:

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time. Given that your cycles only last 14 days, I'd want to ask my neuro about using just prednisone on one of the cycles, see if you can knock it out with just that.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers. As you've probably already figured out, the pain meds don't touch CH, the potential for abuse and side effects tend o far outweigh the minimal relief they provide.

For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe

I have used prednisone before. After just finishing this cycle I have decided to preemptive next time. The cycle befor were mainly focused late afternoon and night but that all changed this time. This time I would wake with it, another mid morning, noon, mid afternoon and late at night so basically no relief. I always seem to get a sinus symptom a few days leading to the attacks so I will be at the doctors to get the meds this time at the first signs of symptoms.

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Reply #79 - Oct 30^th, 2011 at 12:22am

Just wanted to pop in and say how much I appreciate all of you being here! I stumbled onto this site researching my daughter’s headaches and found that and so much more in the form of acceptance and support! I use the word “headaches” loosely because what most of us (without CH) think of as a headache are just an annoyance and not a life event.

In an effort to introduce myself I will try and hit the highlights, I am a supporter for my daughter. Since this is my first experience with an online message board I will refer to my daughter by her screen name “Moonlight”, she is now 20 years old and our journey began five years ago when she was 15. At that time she was diagnosed by her GP with migraine and severe light sensitivity, her meds started out with Maxalt for the migraine and something else for preventative and nothing seemed to take hold. She was seen by a Neurologist, had an MRI, sent to ENT, Physical Therapy and finally Psyche Therapy.

Moonlight had to finish her high school years in home study because she was in so much daily pain. We tried to reduce every trigger we could think of, to the point that she is now living a totally isolated life in her 10 X 10 room with all outside light completely blocked out. She uses minimal lighting in the form of a 4 wt blue night light and has numerous layers of colored overlays on her computer screen and DVD player and these light sources are only used for limited periods of time.

After changing her environment to avoid the migraine triggers and finding that she still had these horrible bouts of pain I started researching other headaches and that is when I stumbled onto this site. When I had Moonlight read the descriptions on your site all she could say was OMG, this is what I have been going through, THIS is what it feels like! Her GP said that it is possible that she also has CH but with Moonlight’s issue with light she does not feel that she can survive venturing out into the word of light again in order to see yet another Neurologist. You see, all these years she has been labeled an angry teenager that needs an attitude adjustment; nobody can “see” the pain that makes her so miserable and when she is in pain she can not answer their numerous questions.

On the Kip scale of pain she is NEVER below a 3, she does not remember what a PF day feels like. The theory as to what tipped the pain scale is her 10 years of Martial Arts training that she did without proper protection; her doc said that it is possible that the numerous blows to her head could have caused additional damage to an already compromised system.

Moonlight is currently on Verapamil 40 mg x 3 = 120 mg per day, Elavil 50 mg per day, plus Imitrex 100mg pills when she is ramping up. Before the Verapamil she had been on Propranolol, she has responded better to the Verap. On her level 3 days she writes or plays her guitar. Me, I try to provide anything that helps, but I can’t stay in her room anymore during an attack. It’s just too hard…

I'm not here with any questions, it's just nice to know that there are people ou there that understand that this pain is REAL!

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spiny

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Re: Newbies. Help us...help you
Reply #80 - Oct 30^th, 2011 at 7:23am

Good Morning,

Potter: Sorry for not using paragraphs. I agree with you and normally would properly present it for ease of reading. I was under a very tight time constraint and bursting to talk to someone who understood what I am going through.

Jimi: Thanks. Have you tried the system used in the online store? At that price, I can even afford the more expensive unit.

I have a farm and access to O2 from our welding supplier. Do I still need a script or can I use a canister from my O2 folks? The Dr. is not very helpful at this point and would not prescribe it last week when I asked about it. Actually, he would not take 5 minutes to talk to me on the phone any of the four times I have spoken to his office in the last week or so. Somehow, time does not seem to have the same spatial quality right now during this brain dead piece of life.

This Prozac thing has to go. Side effects are not acceptable and I have not read anything yet that says this is an accepted approach and I do not want to be labeled 'depressed' in the lovely new electronic medical system. I had a diagnosis of COPD that is now available through the new system. The diagnosis cost me the ability to get Supplemental Ins. until I turn 65! I wonder if Prozac is just a guess on his part or has any validity treating Clusters?

Another thing, how do you get people to stop telling you "I know JUST how you feel. I have a migraine right now." So far, no one gets it. I usually reply with something like "I am so sorry. See you later." Perhaps the only place to talk to people who 'get it' is right here.

Thanks for reading. In addition, thanks for replying. It lets me know that someone read what I wrote and then took the time to reach out and reply

Thanks for your time.

I tried an energy drink for the 9:30 beast, but thought of it too late, so I did not get relief. When the 12:00 beast showed up, I drank the last of it and took another round of pain meds. It seemed to work. I will find out more tonight when #1 hits. It is always the worst and longest of my nightly 3 visitors.

My poor husband is so sleep deprived now that I can't stand it! Everytime he rolls over, he checks to see if I am up again. His efforts to help are really loving, and though it increases the stress to be touched, I don't have the heart to tell him to stop. It is the only thing he can do and he really wants to help.

Yes, I need a new Dr. I was hoping someone in NC could help in that department.

Once again, I am scatter brained from lack of sleep and the pressure is building up for another go. What I most want to do now is talk to you guys and I am heading into hell for another short visit.

Spiny

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Guiseppi

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Re: Newbies. Help us...help you
Reply #81 - Oct 30^th, 2011 at 9:29am

To Spiny,

Your doctor is not knowledgeable on CH. I'll leave it at that or I tend to rant and rave at their ignorant arrogance! Wink

Yes you can use your welding oxygen. The 2 keys to oxygen being effective. Get on it as soon as you feel the headche begin. Get 100% oxygen to your lungs, at a rate to support hyper ventilation. No outside air, no exhaled air, just pure oxygen.

Stop trying to explain your pain. Undecided

No one who hasn't suffered a CH will ever understand, I've just learned to be okay with that.

Please check out what we are now referring to as the "Batch Regimen." It's a daily supplement of over the counter vitamins and minerals, that's providing an incredible amount of relief to many on the board. Go to the medications section of this board. Look for the post "123 pain free days and I think I know why." It's a long read but worth your time. Hang in there, we do understand!

Joe

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Re: Newbies. Help us...help you
Reply #82 - Oct 30^th, 2011 at 9:40am

Good morning Barbara, I'm just a little south of you down here on the "right coast!" I assume you're already working with a headache specialist neurologist, given what sounds like some complex neuro issues.

The first thing I would do is get your daughter on the "Batch Regimen." Go to the medications section of this board and read the post "123 pain free days and i thnk I know why." It's all over the counter stuff, but when you see the number of people showing massive improvements in their headaches by using it, it's a little hard to ignore.

Then try her on oxygen. It's critical you get a home set up as one of the two keys to making oxygen work is getting on it as soon as she feels the attack starting. The other key is geting 100% oxygen to her lungs at a rate to support hyper-ventilation. That's where the high flow regulator and non re breather mask come in.

Her verapamil dose is very low for CH purposes, some go as high as 960 mg a day. You must be monitored by a doc before you increase that dosing though as not everyone can tolerate the higher doses.

Visit our sister site:

Clusterbusters.com

They use non traditional methods to deal with CH. Don't be scared away by the sounds of the "non-traditional" These treatments have given a normal life back to some of our more severe sufferers.

As aparent of two girls, now 28 and 26, my heart aches for you. Smiley

Joe

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Re: Newbies. Help us...help you
Reply #83 - Oct 30^th, 2011 at 11:28am

Thanks for the info Joe, she is taking Omega 3 and Vitamin D3 daily but at much lower doses, I will continue to research dosage and talk with her doc. Her doc has been very conservative with her dosing because Moonlight will not leave the apartment to be seen in the clinic because this always brings on a Kip 10 headache. I take her blood pressure and pulse at home and forward the information on to the doc. I will also look into getting her on oxygen. Thanks again for the welcome!

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spiny

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Re: Newbies. Help us...help you
Reply #84 - Oct 30^th, 2011 at 8:17pm

Hi Guiseppi,
I tried some O2 today, using a wet washcloth as a filter and exhaling away from my source. While I only managed a minute or two, I hyperventilated to increase my consumption.

I am going to order the unit I saw here tomorrow. It works and I am sure that if I get the unit in a close location and not on a 2 foot tether, I will stay with it the full time as well as be able to get to it about 10 minutes sooner.

Your rant or rave would probably make me feel better! So much insanity over the years, yet they assume we are the ignorant ones and resent our knowledge of anything in their field.

I will take in the 123 post. I had already started on vit. D-3 last week. It just sort of seemed logical, since the days are so much shorter.

I wonder: When fall comes and folks start closing the windows and doors and heating with recirculated (partly) air, are we reducing our available O2 inside our homes, are we abetting the beast?

spiny

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Re: Newbies. Help us...help you
Reply #85 - Oct 30^th, 2011 at 9:49pm

I don't think reduced 02 triggers a CH. Some have tried using nasal canulas while they sleep, runing a low flow 02 all night hoping to prevent an attack from starting. I haven't seen any successes posted. Obviously this doesn't qualify as a double blind publishable study!! Grin

....but does indicate that low 02 levels aren't the culprit.

Joe

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Re: Newbies. Help us...help you
Reply #86 - Oct 31^st, 2011 at 8:25am

Maybe not a 'publishable' study, but likely more valid than some that are published! Wink

One other question - is it common for others to get a Cluster from ascending to a higher altitude while experiencing no issues when descending to a lower altitude? I generally run about a 75% chance of a bruiser when going back up my mountain. Usually, it will be an isolated incident, not the beginning of a session. However, if I have to travel the up/down route more than once in a week, it could mean a rough week Sad

Here's hoping that we all have a wonderful day. As for me, I had a FULL nights sleep.

Thanks,
spiny

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Reply #87 - Nov 9^th, 2011 at 1:05pm

I am 20 years old and attending university in Boston. 2 years ago I started getting these headaches. My mother said it was because I was drinking too much or smoking too much. She said I had to get myself a healthier lifestyle. I am physically fit and a very active person. I didn't drink or smoke more than the average college kid but in the spring of last year I started to get them worse and worse so I swore off of drinking and smoking (that was about 5 months ago). I thought that was the remedy. I had no headaches all summer long. I came back to school in September and had no problems for the first month. Then I started to get them again. I figured it was stress and lack of sleep bringing them back and I had a cold at the time too. I thought dehydration may have been an issue too with the air becoming dryer. But between being captain of the sailing team, playing on the tennis team, studying engineering and taking classes I found some time to sleep and get myself more healthy. Yet the headaches have not gone away. I can feel them coming and I know there is nothing I can do about it. I drink lots of water as soon as I sense it and sometimes take Excedrin migraine pills. But its always the same. That burning behind my right eye. I become hot and uncomfortable and the pain increases until its unbearable. Surges of pain make me want to dig into my skull and pull out the pain. Getting them during class is the worst, I can't focus anymore, I sit there and cradle my head begging it to stop so that I can figure out what the professor is talking about. The ones that wake me up at night are just as bad. I lie awake for nearly an hour. Just waiting for it to go away. I get them almost everyday at some point or another. It is a godsend the days I dont have them or even the days where its shorter and not as painful. But they have been occurring so frequently lately and so intensely, I started to do some research. This wasnt just my lifestyle this was something else. Now I have found out about cluster headaches and I will have my first appointment with a doctor about them next week. Is there anything I should know or any advice you have for someone who has just started to learn about cluster headaches?

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LasVegas

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Re: Newbies. Help us...help you
Reply #88 - Nov 9^th, 2011 at 2:18pm

Sorry to read you are suffering. You are not alone. Most of us here understand your pain. The others here are educators and supporters of those who understand your pain. You are not alone.

Get yourself some energy drinks containing 1000mg Taurine and caffeine such as Redbull, Monster, Rockstar, etc. Chug a can as fast as you can at onset of an attack, this should help. The faster you get the Taurine/Caffeine combo into your digestive system, the better. Hopefully using one of these energy drinks will provide you some pain relief.

Over The Counter meds such as Excedrine, Tylenol, Aspirin, Ibufrofin have not been effective for most who reported using these OTC drugs. In fact, pain meds such as Lortab, Percocet, Morphne, etc have not been effective for most who reported using these prescribed painkiller drugs. OTC and Pain meds often will not only provide relief to the CH pain, but also create additional attacks, called rebound attacks. Might consider staying away from OTC products and painkillers.

Read as much as you can about CH's. The best info available in the world about CH's is right here on this website.

Take the cluster quiz, left side of your screen.

Read and learn and ask questions as needed.

You will want to talk with your doctor about abortive treatments such as Oxygen therapy and Triptan medications such as Imitrex injections or nasal sprays. Imitrex pills are generally worthless to CH survivors, as the pills take too long to abort an attack.

Learn the Imitrex Tip-left side of your screen.

Try water therapy-left side of your screen.

Test cold and/or heat to help ease the TORTURE by the DRAGON.

You will want to speak with your doctor about your symptoms and print off that cluster quiz to share with your doctor.

Transitional meds such as a Prednisone taper and Prevntative meds such as Verapamil ahve proven very helpful for most of us who suffer.

Everybody reacts differently to meds, dosages, etc. This is going to be trial and error. What worked last cycle, may/not work this cycle.

Try to keep a diary, a headache log showing times of day/night you are attacked, duration, what you did to abort an attack if applicable, possible triggers, etc.

There is so much to read and learn here that it could take days, weeks or months. So try not to be overwhelmed trying to absorb all the knowledge at once, start with the left side of the screen and click on each of the tabs and work your way down.

Good Luck and again, you are not alone Wink

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« Last Edit: Nov 9^th, 2011 at 2:26pm by LasVegas »

Wishing everybody at CH.com less pain w/ more productivity in their lives in 2019

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Potter

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Re: New to the game
Reply #89 - Nov 9^th, 2011 at 2:27pm

Maar10 wrote on Nov 9^th, 2011 at 1:05pm:

I am 20 years old and attending university in Boston. 2 years ago I started getting these headaches. My mother said it was because I was drinking too much or smoking too much. She said I had to get myself a healthier lifestyle. I am physically fit and a very active person. I didn't drink or smoke more than the average college kid but in the spring of last year I started to get them worse and worse so I swore off of drinking and smoking (that was about 5 months ago). I thought that was the remedy. I had no headaches all summer long. I came back to school in September and had no problems for the first month. Then I started to get them again. I figured it was stress and lack of sleep bringing them back and I had a cold at the time too. I thought dehydration may have been an issue too with the air becoming dryer. But between being captain of the sailing team, playing on the tennis team, studying engineering and taking classes I found some time to sleep and get myself more healthy. Yet the headaches have not gone away. I can feel them coming and I know there is nothing I can do about it. I drink lots of water as soon as I sense it and sometimes take Excedrin migraine pills. But its always the same. That burning behind my right eye. I become hot and uncomfortable and the pain increases until its unbearable. Surges of pain make me want to dig into my skull and pull out the pain. Getting them during class is the worst, I can't focus anymore, I sit there and cradle my head begging it to stop so that I can figure out what the professor is talking about. The ones that wake me up at night are just as bad. I lie awake for nearly an hour. Just waiting for it to go away. I get them almost everyday at some point or another. It is a godsend the days I dont have them or even the days where its shorter and not as painful. But they have been occurring so frequently lately and so intensely, I started to do some research. This wasnt just my lifestyle this was something else. Now I have found out about cluster headaches and I will have my first appointment with a doctor about them next week. Is there anything I should know or any advice you have for someone who has just started to learn about cluster headaches?

Find a competent headache Doctor so as to rule out more sinister causes for headaches.

Potter

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Guiseppi

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Re: Newbies. Help us...help you
Reply #90 - Nov 9^th, 2011 at 4:45pm

Welcome to the board Maar, Potter is right, you need a referral to a headache specialist neurologist. If it's not CH, the faster you get a diagnosis the better. If it is CH, it'sa lifetime affliction, so time spent early on working with a specialist is time well spent!. Are you working with a headache specialist neuro yet? We have seen the best results from doing so. There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis. I’ve had CH for 33 years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach:

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.

Go to the medications section of this board and read the post "123 pain free days and i think I know why." It’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s a long read, worth the time.

For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com

Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe

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Elise

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Re: Newbies. Help us...help you
Reply #91 - Jan 2^nd, 2012 at 11:05pm

Hi Everybody,
I am a 30 year old war veteran who has been out of the service for something like ten years (medical discharge, unrelated) I am being treated for PTSD (another super, wicked fun condition) and I am currently living in RI.
I have not been diagnosed...only diagnosed with "migraines" (HA! good joke!...I WISH they were migraines!) I am joining this sight to get advice and HELP! I don't know who to go to or what to tell them...I have realized that "these aren't simple migraines" for a little over a year now....how did I figure it out you ask? because I had one sooo bad that it made me contemplate...well, you all know what it made me think about...anyways, so I typed into google "**that thing** and migraine...and it came back with "cluster headaches - "suicide headaches" so...I read...and the more I read, the more I was like, "Oh my God, THAT'S ME!!!!!"....I'm still learning...and because I don't know and haven't known that much about these monsters until recently it has been hard for me to keep an accurate diary...especially since my doctor doesn't seem to "get it"...which, how could I expect him to if he doesn't experience these things himself...but I digress...I could not keep an accurate diary because even as late as last night while scrolling through pages online and reading I realized that there are soo many symptoms that I have that I don't even realize are symptoms...so I don't write them down...and when People tell you to write down "everything"...what does that mean exactly...but, for instance...I didn't know that other people with cluster headaches get "restless" and take part in what one site refered to as "almost autistic looking motions" and one site refered to as "the pain dance of torture"...that one made me laugh out loud! For real! I thought I was just in so much pain that I had to move around to try to take my mind off of it...I didn't realize that part of the headache was the eye watering and nose running....I just thought that I was crying silently (since when I have a bad one I go in between not crying one minute and doing the cry of the "dying cow" as my husband so lovingly refers to it, the next!) I didn't know that sweating was common! I just thought that my pain was so severe that my body was almost in a "shock" type of mode...nor did I know that a common symptom is anger...I just thought I was wicked pissed at God for letting this happen to me!...so how could I have kept an accurate diary of all of these things if I didn't know they were symptoms...what did I keep a diary of? weather, time of day, what I ate, what I drank... Sad

My diary: Fail
But here's the deal, I've gone to my PCP and like I said....DON"T GET IT....what do I do? who do I need to go see? a neurologist!?!? What words do I need to use for them to understand my desperation...(years before I had ever heard the term "cluster headache" I had gone to the ER for a "migraine" and I had told the dr that I hoped it was brain cancer and that it killed me quick!)
I also feel horrible for my kids (I have a 10 year old and a 10 month old) I can't imagine how scary it must be for the my 10 yr old to watch...I feel like I should have never had children because when I am caught up in the throws of one of these things I feel like I'm the worst parent in the world...I feel like my kids are going to be traumatized more by these then I am...watching your mom cry, scream, pound walls (because that's all I can do sometimes), rock, pace, pray for the pain to stop, sob uncontrollably and at times not be able to make coherent sentences...and never make eye contact...I can't imagine how scary that must be. Right now I take zomig for them but....that used to work...i also take (usually on the same days)...I don't know what questions I didn't answer, I hope my "history" is complete enough...but that's the basics...I'm looking for any help that anyone can give me...and honestly...just want to talk to people who understand the sheer horror of these things...because no one I know gets them. Sad

not that I'd wish them upon my worst enemy....thank you, Elise

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Re: Newbies. Help us...help you
Reply #92 - Jan 3^rd, 2012 at 12:41am

Hi Elise

With complex headaches you need to work with a neurologist who specializes in headaches. Cluster Headaches (CH) are pretty rare and few doctors have much experience of them, even most neurologists.

Don't worry about having a perfect headache diary, the one I keep for my CHs has the date, day, time, duration, where I was, pain level (1-10), any medication I used and any other comments (where the pain was, what it felt like, etc.). That has been more than enough detail so far.

To diagnose CH, it is pretty much a case of doing tests, like an MRI, plus observations, looking at your diary, etc. to determine what type of headache or possibly headaches you have.

Read the excellent post by Guiseppi which is just above yours. What he wrote applies very much to you too.

Then read and read, you'll soon learn more about CHs than most doctors know.

And ask any questions you've got, people here will try to answer them.

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JackBurton

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Re: Newbies. Help us...help you
Reply #93 - Jan 11^th, 2012 at 12:28am

Hello, I am Christina, I am 32 y/o stay at home mom. I have a wonderful and sympathetic husband who also has cluster headaches but hasn't had one in 2 years with no treatments. I live in northern Ohio. I've been working with my family doctor and will be seeing a headache specialist next month. I was diagnosed with cluster headaches in the ER 2 weeks ago after a very severe migraine sent me in and when I described the pain around my eye, the doctor wanted to try O2 and since it worked he diagnosed cluster headaches.

I recently saw my family doctor and she prescribed verapamil at a low dose then titrate up, I go back in 2 weeks. She also gave me a prednisone pack and an order for oxygen at home. Home health care delivered it today and it's all ready to go. I am lucky to have good health insurance for it not to be a hassle.

I have been having severe migraines in episodic patterns for the last 3 years. Looking back some were clearly cluster headaches, and some were clearly migraines. Migraines meds have been hit or miss, what works once may not work the next time. I tried Topamax but the side effects were too severe. I've tried to keep journals, but especially over the last year the head pain has been evolving. For instance I had no migraines during summer and fall except like clockwork every month I would get a severe, writhing on the ground painful migraine that very well could have been a CH. Now the pain has come back more frequently but with unwelcome friends. I have what seems to be constant nerve pain in the back of my head and along my jaw and cheekbone (trigeminal neuralgia?)

I am healthy, and I have had multiple tests to rule out anything else. MRI/MRA of head and spine, multiple CT scans of head, bloodwork, general neuro exams. Other than seeing a headache specialist and following what my family doc has prescribed, there isn't much else I feel like I can do.

But I am still worried and confused. Isn't a cluster headache supposed to last for up to 2 hours? Mine can last up to 8 hours and beyond. I've gone to the ER so many times this year and feel like a loser doing so, but after 2-3 hours I simply cannot take the pain anymore. With a regular migraine, even a severe one, I can at least take a large dose of benadryl and fall asleep. Not these. Ugh.

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Guiseppi

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Re: Newbies. Help us...help you
Reply #94 - Jan 11^th, 2012 at 8:50am

Welcome to the board, sounds like your GP is on the right track and knows CH based on your initial treatment. We have several members of this board who like you are dual diagnosis, CH and migrain.

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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Read this link to make sure you get the maximum benefit out of your oxygen. Pay particular attention to the masks they describe, "Non Re Breathers" and the flow rates, we find 15 LPM is a bare minimum with some going as high as 45 LPM to get relief. If any of this is confusing ask questions. My abort times run 6-8 minutes, been a total game changer for me.

Go to the meds section and read the post "123 pain free days and i think I know why" A daily vitamin/anti inflammatory regimen that's providing a lot of relief for CH'ers.

Get the hubby on board here too. Sounds like he's off cycle, but the beast being what he is, he's probbaly going to come back. Knowledge is your best defense against the beast. We'll help all we can.

Joe

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japanzaman

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Re: Newbies. Help us...help you
Reply #95 - Jan 19^th, 2012 at 9:15am

I live in Japan and have been dealing with clusters for ten years (four cycles to be exact). I consider myself fortunate in that Prednisone has worked quite well for me in in clearing up my bouts up to date. My remission periods have also been quite long (four years and some change between the previous one and this one).

However, I understand that there are no guarantees with this disorder and I can only hope the pred helps kill this cycle (2 weeks, 7 headaches). I was first diagnosed back in Texas while at college, and the doctors here in Japan have a good understanding of the disorder and were quick to to give me prednisone this time around.

If the pred doesn't work, o2 seems like the next best bet.

The headaches for me are totally random. Sometime in the morning, sometime in the afternoon, each lasting about an hour or so.

I don't fear the pain- it's the interruption it brings to my life that I fear the most. I teach, and I've had to literally walk out of class when a nasty one came up during school. I've stood in front of elementary aged students going through an activity while on the inside I'm doing everything I can to keep from grimacing and slamming my fist into my face.

My wife is Japanese and very understanding, but she doesn't speak very good English and therefore can't read up on this disease as well as I can. Still, after watching me during a couple of my bouts, I think she gets the point!

I've lurked these boards for quite a while, usually when I'm in the middle of a cycle and promptly forget about this site after the cycle finishes. I'll try to pop in a little more this time, but hopefully not too much! Grin

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Guiseppi

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Re: Newbies. Help us...help you
Reply #96 - Jan 21^st, 2012 at 9:52am

Glad ya stuck your head in Japanza! I used to HIDE from this board when off-cycle as I was convinced even thinking about CH would start another cycle! Don't feel you have to post all the time, but please visit often enough to stay up with the most recent developments in treatment. So if the pred ever does stop working....crossing my fingers that never happens to you....you'll have some back-up plans to jump to.

Joe

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japanzaman CH.com Veteran Offline I Love CH.com! Posts: 210 Fukuoka, JAPAN Gender:	Re: Newbies. Help us...help you Reply #97 - Jan 22^nd, 2012 at 10:12am So far so good... had a couple of shadows but no full blown headache yet. Still, dosage is high right now so we'll see what happens over the next few days as I taper down.
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KKM123

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Re: Newbies. Help us...help you
Reply #98 - Jan 31^st, 2012 at 8:44pm

Hello,

I am 33 and live in Hawaii on the island of Kauai. I started having headaches last year on a daily basis with worst happening evenings and mornings. Primary Doctor sent me to a neurologist. I was asked to keep a headache diary and was logging 20-25 headaches daily. I was asked to take pictures when my face drooped and my eye got red so I did.
I have gotten mri's, CT scans, and was finally diagnosed with CPH in november. I have been responsive to indomethacin but stil

l find myself having headaches at least twice a day but not more than 5. I have tried verapamil, ultratram and topiramate. I had allergic reactions to tropimate and verapamil made my headaches worse. Today I got an occipital nerve block administered.
I have a basic understanding of treatments for EPH and CPH mostly being indomethacin. Unfortunately, My neurologist believes that I also have migraines. Kind of feel like a lab rat with all the different medications.
When the headaches are severe I have constant nausea and pain on the left side of my head mostly above my left eye. The eye redness and tearing doesnt necessarily mean I have a headache but will normally come before a bad one. When its over if feel very tired. Other then that its mostly throbbing and distracting making it hard to concentrate.

well nice to meet you all, hopefully I can get some useful advice and in time help others.

Thanks

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Guiseppi

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Re: Newbies. Help us...help you
Reply #99 - Feb 2^nd, 2012 at 9:51am

Welcome to the board KM. Great to hear you're working with a neuro, with a complicated plate like you have, a GP would be a bit out of his element. A couple suggestions to try:

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Read this link and talk to your neuro about getting home oxygen prescribed. Since discovering oxygen, I've all but eliminated my use of imitrex. I average about 6-8 minute aborts of my attacks. When you can abort your attacks that quickly, you don't get left with those horrible shadows, that aching head feeling I believe you describe between attacks.

Go to the medications section of this board and read the link "123 pain free days and i think I know why." It's a simple daily anti inflammatory regimen, healthy for you with or without CH, and it's providing a lot of pain free time for members of the board. Cheap, healthy anyways, certainly worth a try.

Glad you found us, keep reading, knowledge is your best ally against CH!

Joe

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"Somebody had to say it" is usually a piss poor excuse to be mean.

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