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Newbies. Help us...help you (Read 85719 times)
john76
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Re: Newbies. Help us...help you
Reply #100 - Feb 3rd, 2012 at 2:16pm
 
i live in brooklyn ny currently and this is my 3rd go round with this nonsense and its killing me. i didnt have any episodes yesterday and today i had 2 already. does this mean the cycle is almost done? im 35yo and this monster is beating the shit out of me. not on any meds because doont have much faith in them due to the inconsistencies in effectiveness. any advice? i feel like ripping my eye out.
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Re: Newbies. Help us...help you
Reply #101 - Feb 3rd, 2012 at 2:29pm
 
john76 wrote on Feb 3rd, 2012 at 2:16pm:
i live in brooklyn ny currently and this is my 3rd go round with this nonsense and its killing me. i didnt have any episodes yesterday and today i had 2 already. does this mean the cycle is almost done? im 35yo and this monster is beating the shit out of me. not on any meds because doont have much faith in them due to the inconsistencies in effectiveness. any advice? i feel like ripping my eye out.


What meds and dosages have you tried that you found inconsistent?

-Gregg in Las Vegas
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Wishing everybody at CH.com less pain w/ more productivity in their lives in 2019
 
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Brynne
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Reply #102 - Feb 3rd, 2012 at 6:34pm
 
Hi. I am a 29 yr old female. I live in N.W. Washington.  I've had CH's for the last 3 yrs. The first time I had one I thought I was going to die. I was scared that I was having an aneurysm or had a brain tumor or something. I went to the hospital and they gave me dilatin (which barely took the edge off) and told me the name of a neurologist. The CH's use to last for a month a round with a month break. But, I've been dealing with this round the last year and a half. No breaks. Its been 1 1/2 yrs without a full nights sleep. The doctors said they couldn't do anything for me because when this round started I was 5 months pregnant and then later breastfeeding. They gave me vicodin. 20 5mg pills to last 30 days. Which did nothing to ease the pain of 1-3 episodes a night. Although I did go to the hospital the first couple times after I was pregnant and they gave me an IV of dilatin.  I am a single mother with a 6 year old and a 1 yr old. Dealing with the Ch's too I'm soo sleep deprived and depressed that I usually stay at home. I'm glad to have finally found a place that understands how bad the CH's are. I hate it when I try to explain it to other ppl and they're like oh ya I've had migraines before. And I'm like NO u dont understand. The only real support I have is from my mom (who I live with), she gets up with me at night and will help talk me through the pain. I really dont think my doctor understands even though I've told him, "look childbirth rated a 3-4 max on the pain scale, the CH's rate 10+." I also get tears running down my face and redness and heat on the same side as the CH. Cry   And afterwards I'm exhausted. Now I am still having CH's but my baby is fully weaned and I dont know which medicine would be most helpful. O2 never really helped me and the side effects of prednisone are horrible for me. Imitrex seemed to help before my pregnancy but the side effects seem to last longer than the CH's. I am going to get another appt with a neurologist and see what he thinks.
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Re: Newbies. Help us...help you
Reply #103 - Feb 3rd, 2012 at 6:48pm
 
Welcome to the board Brynne, we're danged glad you found us. Read this link, Many who found oxygen didn't work were using it incorrectly, using nasal canulas, rebreather masks, low flow rates, all guarante failure. My aborts run about 6-8 minutes huffing 02, many have similar results:

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

Then go to the medications section of this board and read the post" 123 pain free days and i think I know why" A simple anti inflammatory regimen, all over the counter and cheap, and healthy for you even if you don't have CH. It's getting a lot of people pain free. Start at the end and work your way back as it's a work in progress that's regularly getting tweaked. Given where you live you might really benefit from the D-3 part of the regimen.

2 preventative meds to discuss with your doctor, verapamil and lithium. Print this out and take it to your doc, he'll regognize the source:


Headache. 2004 Nov;44(10):1013-8.   

Individualizing treatment with verapamil for cluster headache patients.
Blau JN, Engel HO.


    Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).

=======================================
SLOW-RELEASE VERAPAMIL

Dr. Sheftell applauded the protocol for verapamil used by Dr. Goadsby and colleagues, which entailed use of short-acting verapamil in increments of 80 mg. “This method was suggested by Lee Kudrow, MD, 20 years ago as an alternative to slow-release verapamil,” Dr. Sheftell noted.

“I would agree with using short-acting verapamil, rather than the sustained-release formulation, in cluster headache,” he said. “I prefer the short-acting formulation with regard to ability to titrate more accurately and safely. My clinical experience anecdotally demonstrates improved responses when patients are switched from sustained-release verapamil to short-acting verapamil.”

Dr. Goadsby agreed that his clinical experience was similar. “There are no well-controlled, placebo-controlled, dose-ranging studies to direct treatment. This is one of those areas where clinicians who treat cluster headache have to combine what modicum of evidence is available with their own clinical experience,” Dr. Sheftell commented


Hang in there, there's a wealth of info here we'll all try to help you!

Joe
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Franky
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Re: Newbies. Help us...help you
Reply #104 - Feb 15th, 2012 at 4:05am
 
Hello.

I'm 26 and I live in Croatia. I've been having cluster headaches on and off for almost 6 years now. Both my parents are doctors so after they realized I'm not having normal headaches or migraines it was up to them to see what was wrong. With no disrespect to doctors who know what they are doing most of them in Croatia don't. I was diagnosed with CH but as it is not that common here (I was the first this doc saw, he was around my age so kinda figures).
I'm a "lucky" one I guess since the remission period of my headaches is pretty long. Most of the time it's 3 months on, 3 months off, if I’m really lucky it’s 6 months off. The headaches on average last and hour/hour and a half. Two nights ago was the worse one I’ve ever had and lasted around 2 and a half hours. Tonight it only lasted an hour and a half. Every headache turns me into a whimpering madman. No pain I’ve ever had comes even close to this.
I've had asthma attacks (not so severe) in the past and they always occur during a CH episode. I've used just a regular Ventolin inhaler, but during the "shadow" phase of CH using Ventolin only makes things worse (from what I understand due to the rapid dilation of blood vessels when I start to breathe normally). My parents prescribed me corticosteroids and that helped, but since that's not a permanent solution due to the side effects.  I am currently waiting to get Verapamil hoping it will help.
My attacks occur only during the night at 3am sharp, so my limitations as far as “normal” life is concerned are very few. Just the normal exhaustion and depression. I live alone with my closest friend lives 1 hour away but she provides social support enough for 10.
I hope I can learn more about my condition here and try to help others.

Edit: Once my grandfather tried to call an ambulance because the headache was so severe I was screaming and bashing my had against a wall (not so smart but I was out of my mind) they refused to come because "they are not sending an ambulance for a headache"
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« Last Edit: Feb 15th, 2012 at 4:10am by Franky »  
 
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Re: Newbies. Help us...help you
Reply #105 - Feb 16th, 2012 at 9:05am
 
Welcome to the board Frankie. Have your folks read this link:

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

It's the safest, fastest abortive available to you. My aborts average 6-8 minutes just breathing pure 02. It must be used correctly or it won't work so do take the time to check out the link. Then just start reading like crazy on this board. You'll be qualified to teach your doc all the latest and greatest treatment options for CH. Glad you found us, i hope we can help you.

Joe
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Re: Newbies. Help us...help you
Reply #106 - Feb 17th, 2012 at 10:47am
 
Hello My name is Angela and I live in Wilmington NC. I have not officially been diagnosed but am thinking this is the most likely possibility as to my condition. I have for about 2 years in a row now out of the blue been experiencing daily headaches on one side of my head (right) right behind my eye that last all day on and off for a duration of 5-6 weeks and then also out of the blue they go away and do not return for almost another year. Through Internet research this has made me believe the clusters fit the bill the most. At this point the headaches when I am experiencing are really bad but not as severe as I have heard in some peoples stories but I am afraid mine will eventually get to that point. It scares the heck outta me. Do they normally start off moderate and then progressively get worse during each cycle?
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Re: Newbies. Help us...help you
Reply #107 - Feb 17th, 2012 at 11:22am
 
Hi Angela,
Sorry to read you are experiencing such pain and frustration. 

My CH's (Cluster Headaches) started when I was 10 or 11 yrs old.  My middle school, high school, college and many of my adult years were misdiagnosed by doctors.

In 1999 I discovered this website and took the Cluster Quiz on the left side of your screen-yellow tab.  Every single question/answer indicated I had CH's and self diagnosed myself.  I brought my research from this website to a qualified headache specialist who confirmed my diagnosis.

I suggest, if you already haven't, to take the Cluster Quiz.  You should get to a headache specialist/neurologist who can confirm your diagnosis and rule out anything else that may mimic CH's and/or be an issue within your head.

Most doctors are not familiar with CH's as it is a very rare disorder.  You will need to be a self advicate by reading from this website, comprehending your knowledge and sharing your new expertise with your doctor.

Proper CH treatment includes (1) Transitional medication, (2) Preventive medication and (3) Abortive medication.

Do read and understand the value of each of these three treatments for best control of your cycle and life.

When you feel like venting, this is the place, as we understand CH pain moreso than anybody as we also suffer.

After you have clicked on all of the yellow tabs and read each of the sections of threads of topics with reply posts, do ask questions.

I found a list of recommended doctors close to Wilmington you may consider scheduling an appointment.  This list of doctors is recommended from other CH sufferers that are in your area.  The list is from the OUCH (Organization for Understanding Cluster Headaches) website.

In Newark, Delaware...
Dr. Sung Ho Bae Neurosurgical Associates

In Philly...
Dr. Steven Mandel
Dr. Stephen D. Silberstein Jefferson Headache Center
Dr. William B. Young Jefferson Headache Center

There are other recommended docs in PA listed on the OUCH website, but these should be a good start if the doc in Newark is of no interest.

Just remember, you are not alone!  Most members on this site are helpful and will offer sound advice to you.  Don't delay scheduling an appointment with a qualified headache specialist, do your own research on this website to better your understanding of CH's and start your treatment ASAP.

You will get through this! Wink

-Gregg in Las Vegas
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Re: Newbies. Help us...help you
Reply #108 - Feb 18th, 2012 at 9:54am
 
What Greg said! If it is CH...and it sounds like you may be in our select group....it's a lifetime condition. So the sooner you start working with a qualified headache specialist neurologist, the better. Mine started in my late teens, without the severe attacks, and without the clockwork like regularity that begin in my 20's and 30's. I'd really push you to continue your research on this board, but get thee to a specialist!

Joe
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Re: Newbies. Help us...help you
Reply #109 - Feb 18th, 2012 at 2:45pm
 
Hi, I'm 41 and from Yorkshire in the Uk and was diagnosed last year with clusters by my own GP who has an interest in headaches.  I was sent for various tests, MRI etc and all came up clear so was sent to York Neurology department for them to give a definite diagnosis.
It was Clusters and they put me on Verapamil which seems to damp down the attacks to a level I can cope with.  They tried me with a sumatriptan injection which worked on the headache but absolutely floored me! Nearly passed out on the floor!
I'm now on my second bout exactly one year on and so know it will last 12 weeks.  Only 5 more to go!  The verapamil is working and my Dr is now trying me with a sumatriptan nasal spray which is much better.
Having read a few posts I am going to try the ice packs for one thing, but also noticed it affected someone else's teeth.  Have suddenly found my own are very sensitive.
Just appreciate that there is somewhere like this to talk about it.  My GP is brilliant and very supportive but explain why you are stamping about crying from only one eye and everyone looks blank!  Often feel like sayin it's a migraine as that would elicit some sympathy for a change,
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Re: Newbies. Help us...help you
Reply #110 - Feb 18th, 2012 at 6:30pm
 
Jacey wrote on Feb 18th, 2012 at 2:45pm:
Having read a few posts I am going to try the ice packs for one thing...

Frozen peas are our friends. Also consider chugging a Red Bull-style energy drink at the first twinge of a hit. Many find it helps a lot.
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My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com
 
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Re: Newbies. Help us...help you
Reply #111 - Feb 19th, 2012 at 1:42pm
 
Hello all,

I have been a CH suffer for about 15 years. I was diagnosed at about 16 and I am 32 now. I started getting CHs when I moved to Denver from Phx during the mid 90's. Originally it was thought that I had severe sinusitis and was put on antibiotics and decongestants for many years. After I was finally diagnosed - by a PCP who actually knew his stuff - I received imitrex, o2 therapy and prednisone to help me abort CH during my cycles. I am episodic and usually go about 12 to 18 months between cycles. I was a long time smoker and drinker throughout my years of CHs. Since, I have been sober for nearly 3 years and smoke free for close to a year and a half. I am also diagnosed with adult ADHD and panic disorder, which the ladder is in remission.
I went close to 5 years without a CH cycle and thought I grew out of them. My CHs are always on the right. I have problems with excessive tearing, red eye, drooping eyelids, nasal drainage, and intense pain around the eye, temple and forehead. During my cycles I constantly blow my nose to try and release the pressure in my head. My CHs last usually 30 minutes to an hour and occur 1 to 3 times a day ( usually during the afternoon and night).

I was CH free for close to 5 years. During that time I made a lot of changes in my life. I was on an antidepressant for 4 of the 5 years that I didn't have CHs. Also, I moved to AZ and got sober 3 years ago. I lost close to 50 lbs as a result of changing my lifestyle. I went back to school and changed careers during this time as well. Before my current cycle came on, I started to get really intense allergy attacks after running outside in PHX.
Today I just finished my sec prednisone taper and I am feeling like my cycle is almost over. I saw a PCP who prescribed me cardiezem and imitrex injections to abort. He didn't go the o2 route due to insurance issues ( according to him).
I forgot to mention, 1 week before me current cycle began I weened completely off of Celexa a drug I was on for most of the time I was CH free. I have been taking Vyvanse for ADHD for nearly a year - if that helps?

I'm sure I forgot to mention something, however, I tried to be as thorough as possible.

Maybe someone has a similar story or can relate.
Have a great weekend!
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Re: Newbies. Help us...help you
Reply #112 - Feb 20th, 2012 at 1:47am
 
Hi and welcome

I see that you've got prednisone as a preventive, however this should not be taken long term as it is pretty harsh on your body and long term use can result in significant issues. We normally use it as a short term preventive as a taper dose over 1-2 weeks whilst a longer term preventive, like verapamil, lithium or topomax, builds up to an effective dose. However some people with very short cycles do just use the prednisone, but this isn't too common.

I am not sure why your PCP didn't go the oxygen route as this is a lot cheaper than using imitrex injections and there are no side effects. I kill off my CHs in about 5 minutes using 25lpm as a flow rate and a non-rebreather mask.

People in the US will be able to give you better advice about dealing with insurance companies.


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Re: Newbies. Help us...help you
Reply #113 - Feb 20th, 2012 at 7:57am
 
Hi Guys thanks for the great advice I finally had to go to see a physician Saturday because the headaches were just not holding back! He prescribed me the  Oral pill form  Imitrex and is referring me to a Neurologist to follow up. I must say the Imitrex has worked wonders for me. After only a day on it the pressure and pain behind my eye is gone and upon a full blown attack once I take this it aborts pretty quickly. Must be a wonder drug. I will update you guys once I go to see the Neurologist.
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Re: Newbies. Help us...help you
Reply #114 - Feb 20th, 2012 at 10:03am
 
Here's hoping the neuro you see is up on Clusters. If you like the oral form of imitrex, wait until you try the injectable...complete relief in a matter of  minutes.

Discuss oxygen with the doc, the best of the aborts in my book. Read this link ahead of time so you know the set up you need. I kill my attacks in about 6-8 minutes just huffin the 02, good stuff:

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

Good luck with the neuro.

Joe
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Re: Newbies. Help us...help you
Reply #115 - Feb 21st, 2012 at 1:31pm
 
Hi My name is Kevin. I am 37y/o male from Pennsylvania. I have been diagnosed with clusters by my Dr. She is a neuroligist at Mt sinai school of med, center for headache and pain medicine. I am currently on Inj DHE,Depakote 1000mg twice daily,Namenda 20 mg twicw daily, verapimil 720 mg,and dilaudid 8 mg tab for pain if it works. I am in the middle of an episode that started 21/2 weeks ago. i recently had my longest attack to date lasting over 4 hrs. If i did not have my wife and son i would no longer be here right now.  Cry
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Re: Newbies. Help us...help you
Reply #116 - Feb 21st, 2012 at 7:59pm
 
Hi Kevin...welcome aboard!

That's quite a list of meds...makes me wonder if there are other health issues besides ch. Entirely your business...and I have no intent or desire to question your Doc's decisions...so, just some comments for your consideration.

I don't see O2...check out the Oxygen link to the left. It MAY just relieve you of this med combo...it sure did me.

Many here find that a preventative  (like  verapamil) and an abortive like zomig nasal spray or imitrex injectable are effective controls....along with an initial prednisone taper to allow preventatives time to become effective.

Again...the oxygen may allow elimination of all of that.

The reported experience of this group is that multiple meds create a situation where one does not know which are helping and which are not...it's thought that one or several...given a reasonable time frame to work...will prove out or not.

Pain killers rarely work...and have considerable negative potentials...

Best wishes...stick around and read, read, read.....we can help...

Jon



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Re: Newbies. Help us...help you
Reply #117 - Mar 2nd, 2012 at 3:07am
 
I'm not sure if my husband is a sufferer of cluster headaches but either way I feel so helpless in the quite obvious pain he is in.  It started suddenly a few nights ago around 11 at night and I had to force him to go to the ER.  He was pacing incessantly and said it felt like his right eye was being crushed.  Now I've read a pretty substantial amount of information and posts from different sites and what he was describing to me sounds exactly like what most of the people who post here suffer from too.  My husband is only 27 years old but for the last few days, he has almost noticeably aged due to his pain.  My husband is also active duty with the United States Air Force and his career is EOD, so he disarms the IED's or "bombs" that news channels talk about a lot.  He has had reconstructive surgery on both feet and ACL surgery, yet he says that this new pain in his head is the worst pain he has ever felt in his entire life.  We are afraid to tell the base doctors about what is happening because he might lose his security clearance meaning his job, and he only has 3 years left until he is out for good.  I apologize for this being so long but I wanted to explain our situation and hopefully emphasize my extreme feeling of uselessness and hopelessness towards his horrendous pain.  I would greatly appreciate any and all comments and/or suggestions about what my first step should be to help him. 
Sincerely, In Desperate Need Of Advice
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Re: Newbies. Help us...help you
Reply #118 - Mar 2nd, 2012 at 3:15am
 
My husband recently was prescribed Wellbutrin about 2 months ago for mild depression.  He only took it for less than 3 weeks but about a week or two after he was off them, he suffered from what the doctor called a cluster headache.  He's been in pain for over 5 days now.  Is there any possibility that the Wellbutrin could have contributed to this sudden change?
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Re: Newbies. Help us...help you
Reply #119 - Mar 2nd, 2012 at 10:58pm
 
Not sure about the Wellbutrin causing headaches, I haven't heard of it before. Sudden onset head pain is not something to take lightly. It's quite possible it's the onset of CH, but there are numerous other more serious, even rarely life threatening conditions, that need to be eliminated before a solid diagnosis can be made. All easy for me to say as I'm not looking at getting booted from my retirement with only 3 years to go.  Cry

While he is navigating the VA Medical system....can be a nightmare from other posts I've read......I'd suggest he start with what we call the Batch Regimen. A daily vitamin/anti inflammatory supplement that's helping alleviate the attacks for many. Not a cure, but even if it's not CH it's a healthy daily regimen. Go to the medications section of this board and check out the post "123 pain free days and I think I know why" For attacks, have him try chugging an energy drink, Rock Star, Monster, any containing the combo of caffiene and taurine. Many can abort or at least really reduce the intensity of an attack that way.

Keep pressing for a solid neuro work up, we always worry about teaching somebody to mask pain, only to discover we allowed a condition to deteriorate while we treated only the symptoms.

Joe
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Re: Newbies. Help us...help you
Reply #120 - Mar 5th, 2012 at 11:07am
 
Hey all, amazing to find other folks that suffer these attacks like I do,  I am a 44 yr old caucasian male living in KY USA. I have been having clusters for about 25 years. The following is my testimony.

My attacks began (I call them attacks because "headache" is a severe understatement) when I was 18 or so. at first they were fast, severe and thankfully rare. at first I thought they were like brain freeze but worse and no flavor.
Of course they soon changed into a regular thing. Once a day at 6:00 Pm Id have an attack that took 15min to reach peak then would quickly dissipate after that.

My first try at professional treatment was to go to a chiropractor, He took Xrays and found an issue with the curve of my neck bowing forward instead of backwards.
I started treatment, and although it helped my back and neck pain, it didnt seeem to have any real effect on the clustrs. I continued treatment for about a year and, found out also that I have one leg .812" longer than the other(confirmed with full length X rays). and have been wearing a shim in my boot ever since. Still little if any effect on the clusters.

My second attempt was to go to the pain center at miami valley hospital under the care of a neurologist named Dr. Demergen. He diagnosed me with "chronic cluster headaches", and started treatment with  an egot derived drug called "methergiside". Im gonna be honest I hated that crap. at first I had constriction of the arteries in my legs. I felt like  I had ran a marathon, the Doc claimed it was a common side effect and reduce the dosage 50%, I basically had 3 wks of living hell trying to get the dosage right. I ended up taking 1/4 pill 1x a day from the original dosage of 1p x3x. I went from 1 attack a day to about 5 attacks. I was extremely irritable and restless and, basically became a jerk to all my friends and family. regularly losing it and flying into a rage which is not a normal part of my personality. I quit the meds and the Doc, went back to the chiropractor and, after the first adjustment went immediately back to having my nice stable predictable 1 daily attack.

I pretty much went with my daily attack at 6PM for the next 12 years. and continued sporatic chiropractic care, with varios chiropractors.

It was after that I began seeing some relief due I believe to the repeated chiropractic care and lmprovement in my physical posture from correcting the leg length issue. A new chiropractor suggested that possibly the weight of my hair wich was waist length, may be contributing to my headaches. I scoffed at first but eventually I took the plunge and cut it all off. and it actually helped a bit. within a few weeks of the "haircut" and regular adjusments from the new chiropractor I had my first attack free day since my symptoms went chronic at age 19 roughly 14 years. I got to the point where I would be cluster free for months and at the first sign of "shadows" as Ive heard them termed here I would go get an adjustment and be attack free for a few more months. That chiropractor passed away, and I went for about a year without chiropractic care. It was the recurrence of the clusters that drove me to seek another Chiropractor and, within a week of resuming regular adjustments. I was once again attack free.

There is hope, this was not an overnight fix, it took years to get my spine in good enough condition to experience relief and, although I still occasionally have clusters they are no longer chronic, the severity is no where near the debilitating pain attacks I suffered daily for many years and, their recurrance is definitely related to neglecting my chiropractic "tune ups" as I call them.

My theory is that when muscle tension reaches a certain point it begins to feedback like a microphone set in front of a live speaker, when the microphone is moved away or turned away from the speaker the amount of sound feeding back into th mic gets below a certain threshold the feeback stops.
The chiropractic adjustments eventually result in muscle tension falling below the treshold that triggers an attack. This is only a theory and honestly it does not answer the timing issue of the daily attack. Possibly it is linked to other physiological factors I know nothing about.

It is my sincere prayer, that this can help some of you find relief or at least give some hope. I have to say I never though I would have the opportunity to share this with anyone. God bless you all and, thank you to whoever it was that started this site Im hoping to become a regular visitor and, learn even more about you all. Smiley
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Re: Newbies. Help us...help you
Reply #121 - Mar 5th, 2012 at 11:53am
 
It's your hypothalamus.

        Potter
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Re: Newbies. Help us...help you
Reply #122 - Mar 5th, 2012 at 11:01pm
 
I have been diagnosed with CH's for 2 years now, I am male, age 42, 6'3", 210lbs and have suffered for 5 yrs.  My CH's started back up 2 weeks ago.  Before being diagnosed, my MD 1st started with a cat scan (negative) which led to sinus surgery. Then MRI (negative), then sleep study (no Stage 3 or 4 sleep) I was given a CPAP to try for thirty days, I felt more rested but at this stage I was in remission from CH's.  My insurance would not pay for CPAP so I bought one myself & still use weeknights.  I live in Charleston, South Carolina and my CH's usually begin at the end of February beginning of March and last for 3 months.  My MD finally did a little research and discovered that all my symptoms pointed to CH's and I was diagnosed. 

Pre-Cluster Headache Triggers/Symptoms:
1. slight headache on back of neck
2. burning sensation also on back of neck
3.  Sunlight in eyes on way home from work
4.  high humidity = achy & dull whole head headache
5.  exertion ie: bending down, sometimes sex
6.  talking loudly for extended periods
7.  Drink ie: beer  (casual drinker maybe 10 beers a yr)
8.  extended time outdoors (sun, heat , humidity)
9.  exercise
10. noise (extended loud)

During Cluster Headache: (always left side)
1. Worst pain -located above eye
2. pain -on cheek
3. pain -right by ear lobe toward cheek
4. pain -upper left jaw & teeth
5. pain -back of neck
6. eye tears (left)
7. nostril runs (left)
8. can't stand, pace, exercise
9. sensitive to light & sound
10.  sometimes sweat thru ice bags 
11. try to sit still but can't, pound legs switch, pos. regularly

Medications:

Last year: Verapamil , imtrex pills, butalbital spray & tons of Excedrin migraine

This year: Verapamil, imetrex spray and Nucynta

Baaaaaaaa Humbug!!!!!  Not sure if the Verapamil does anything.  I think the imetrex works sometimes but truthfully am I just being fooled if I don't actually go to a full CH.  The Butalbital seems to work sometimes & lessen the pain, but when CH was over, I felt drugged and need to sleep.  Hard when you have work to do.  The Nucynta is a pill and seems to take 30-40 min to kick in and has worked but geez 30-40 min is not abortive.  Then left feeling drugged again.  I have tried everything I can get my hands on & have things ready for my timely night wake-up calls sometimes 3 a night, feeling symptoms now but only get 6 sprays of imetrex per script and find myself missing taking them & getting slammed just trying to preserve meds.. 

That's pretty much my story, plus my symptoms are increasing and I need to prepare. Just my luck, it's bedtime and need to be up for work @ 4:30  ugh...

Not glad I'm not alone but it has been nice to have this site as tool for trying to kick these CH's.
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Re: Newbies. Help us...help you
Reply #123 - Mar 6th, 2012 at 9:10am
 
Take a look at this link, these are doctors recommended by other CH sufferers who are more up to date on treating CH:

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

Then check out this link on how to use high flow oxygen. My aborts run 6-8 minutes, that's from onset of symptoms to pain free, just by huffing oxygen. Great for the night time hits as it lets you go right back to sleep with no med side effects:

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

Then go to the medications section of this board and check out the post "123 pain free days and i think I know why." It's a daily vitamin/anti inflammatory regimen that's providing a LOT of relief for people on the board. The best part is even if you don't have CH it's  a healthy daily regimen. If it doesn't work you're only out $5-$10 bucks!

Continue to read these boards, in no time you'll know more about CH then most of the specialists out there! Glad you found us, hope we can help you.

Joe
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Re: Newbies. Help us...help you
Reply #124 - Mar 7th, 2012 at 8:17pm
 
Thank you for the reply.  Columbia, SC is a bit far away to switch up Dr's.  I am satisfied with my Dr. so far since this is new to both of us.  From things I have read on this site he got the Varapimil & Imetrex right, it's the abortive that seems to be the missing cog.  I have an appointment this Friday and will be mentioning the O2, sounds like a good option.  A little concerned being a smoker but I think I can separate the 2.  Should I mention that he also put me on DexPak a 6 day series of pills 6, 5, 4, 3....  maybe to compensat for the time the varapimil take to get in your system.   The reason for the imitrex sparing is not on my Dr. it's my insurance co. putting limits on how many I can have, so now since I know the game I will be stockpiling every 5 days.  Thanks again.  -Tim
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