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I can't live like this (Read 6950 times)

raindrops

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I can't live like this
Apr 28^th, 2015 at 9:03pm

I need some shoulders to cry on here. I've had CH since I was 11, but it was only diagnosed a few years ago, because I live in waaaay rural NC, where every headache is a hormonal thing, according to some of my doctors.

I have in the past taken Zomig, oxygen (but I think with the wrong mask), and Verapamil 180 mg.

This round started in February. I tried to deal with it on my own, using the mask, Imitrex (100 mg tablets, but I break them in half because they will only give them nine a month, and I also stockpile them in off months), and the Verapamil. They just won't stop. They've never lasted this long, and I just kept telling myself, it'll stop in a few days.

I finally went to GP today, and got an appointment at Duke University, which won't happen until June. In the meantime, I've been put on 80 mg Prednisone, to taper off over ten days, in addition to everything else.

I'm a kindergarten teacher. I don't smoke, drink, or take drugs. I am overweight, but I have been on a diet and exercise plan since September. Over the past few years, I've been getting 3-4 headaches a day, usually for about a month in February or March.

I've used all of my leave. I am sinking farther and farther into the hole financially. I can barely work a full day of work, and my co-teacher has had to assume a lot of the responsibilities. I can't even go out with friends anymore. If we go to a movie (my favorite pastime), I know I probably will have to leave halfway through if the pain starts to creep back. I work as much as I can, and rush home when the shadow starts, because I only live three minutes away from school. I turn on the O2, and take the Imitrex, and curl up on my knees with my head buried in the couch, squeezing my head until I think it will just shatter. This is multiple times a day, for months. When it's over, I feel so exhausted I can barely move.

I just don't know how I will make it to July. I'm terrified the Prednisone won't work. I'm scared I'll lose my job, even though my boss is super awesome. She says I'm her best language teacher, and she won't lose me. If anything, I'll get moved to a desk job upstairs to develop curriculum, and work as a substitute in the building as needed. I couldn't ask for a better boss. But I'm harder on myself than she is. I hate myself, and I hate that I am weak and out of control. I can't fix them, and I don't know what to do.

I've talked to a therapist before, but not often, as it gets expensive, and never during a cluster, just because I don't want to leave the house. But I feel like, one, day, I'll just give up, and I'll be so out of my mind with pain that I won't be able to rationalize myself out of it.

Someone, out there, please tell me you know what I mean. Please tell me it gets better. Even if you have to lie. Cry

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Peter510

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Don't give out... But
don't give in.

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Re: I can't live like this
Reply #1 - Apr 28^th, 2015 at 11:50pm

Raindrops,

I can totally relate to a lot of your situation. I've been suffering for about 13 years, with the last two being chronic, i.e. Every single day, several times a day.

I too have lost a lot of work time and also gave a boss who could not be more flexible and understanding. I too have colleagues who have taken up the slack time and time again, without complaint. I too beat myself up with guilt over this.

If your boss is offering you an alternative and says she doesn't want to lose you, believe her. Clearly you are a valuable asset to her. Be grateful for that, I am. Lots of CHers have to deal with work pressure and intolerance, on top if their condition. Lots of people have lost their jobs.

My saving grace is the D3 regimen. I started this about two months ago and while I'm not quite 100% pain free ( yet), I'm 90% there. This is a vast improvement from anything I've tried over the years. It's healthy and cheap.

You should get your D3 levels checked straight away. Read everything you can on it, on the thread "123 days pain free" on this board. Devised by an amazing man named Batch, it has been a Godsend for countless suffers.

I wish you the best of luck and believe me when I say that it can get dramatically better in a very short space of time.

Keep the faith. Keep posting here and asking lots of questions.

Best wishes,

Peter.

You don't stop laughing because you grow old....You grow old because you stop laughing.

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Batch CH.com Alumnus Offline Control The Beast With O2 & D3 You Must Posts: 3706 Bremerton, WA Gender:	Re: I can't live like this Reply #2 - Apr 29^th, 2015 at 12:17am Hey Raindrops, Peter is spot on about the vitamin D3 regimen... Check your PM inbox in the upper left corner of this screen... It should say you have 1 new PM. Take care, hang in there... and please keep us posted... V/R, Batch
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AussieBrian

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CH - It's all in your
head!

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Re: I can't live like this
Reply #3 - Apr 29^th, 2015 at 12:56am

It honestly does get better, Raindrops, and we don't have to lie because many of us have been where you are now, and it's a horrible place, but there truly is hope.

Having oxygen already is a great step forward so look at the top left of your screen for the Oxygen Info button. This might give you some beaut clues on how to get even greater relief from this wonderful stuff.

There are many combinations of medications which can help, it's just a matter of finding the mix that suits you. Slamming down a Red Bull type energy drink at the first hint of hit helps many.

There's a batch of vitamins called the D3 regimen a lot of people swear by and it's all here for you.

We're here for you, too, because we care.

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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BarbaraD

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Hugs to ya

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Re: I can't live like this
Reply #4 - Apr 29^th, 2015 at 7:02am

What they all said. The D3 regimen is super great for so many of us. I've been chronic since 97 and have been thru hell, but since beginning the D3 - (Oct 2013) I have NOT been hit at all.

Listen to Batch and do it the right way..

And WE do understand and have been right where you are. And it will get better ..

I'm an accountant and the last two tax seasons (since beginning the D3) have just been Excedrin Headache 1040 - but no CH.

Keep us up on how you're doing .. we're here 24/7 and have BIG shoulders.. Kiss

What don't kill ya, Makes ya stronger!

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raindrops

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Re: I can't live like this
Reply #5 - Apr 29^th, 2015 at 12:35pm

Thanks for the support. Sometimes, it's easy to feel alone. I think that there is only one other person in our entire town that has this.

I was able to work a bit this morning, until I felt the shadow creeping up. I had to leave school at lunch, and my coworkers took over to watch the kids. I felt awful about going home yet again. Took an Imitrex, turned on the O2, and waited it out for about 30 min. I just want the meds to go ahead and work.

I think the Prednisone will help. I hope so. They just want to keep throwing Imitrex at it, but by the time it gets that bad, your life is interrupted. I want a preventative. Verapamil has worked in the past, but it just hasn't this year.

I will definitely research all the advice on this thread. Thanks so much.

My boss is super awesome. She assures me that my job is not at all in jeopardy. It's just my own worries. But, I still feel like a bad teacher and a bad person. I can't believe I didn't contact the Duke center sooner, but I just thought that these would be a fact of life for me forever.

My appointment is still on for July 23 with the cluster specialist (who is apparently very busy). But, I am on an "acute" waiting list, whatever that means. If they get a cancellation, I can take the appointment. But, as I live 7 hours away, it will have to be a lot of heads-up.

So, anyway, thanks again for the support. Off to find a cold cloth.

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Rumeke CH.com Veteran Offline Posts: 173 Westfield, NC Gender:	Re: I can't live like this Reply #6 - Apr 29^th, 2015 at 9:00pm Raindrops...where exactly do you live in NC? Is Winston closer to you?
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Mike NZ

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Oxygen rocks! D3 too!

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Auckland, New Zealand
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Re: I can't live like this
Reply #7 - Apr 29^th, 2015 at 11:31pm

raindrops wrote on Apr 29^th, 2015 at 12:35pm:

Thanks for the support. Sometimes, it's easy to feel alone. I think that there is only one other person in our entire town that has this.

That might be true, but here you're amongst many, many people with CH. Look at the top of the page and you'll see a link with a list of members and there are thousands of us, whilst not everyone is active here all the time, there are enough here that there is an active community. And with people from all over the world there is probably someone around pretty much 24x7.

So you are never alone and we understand CH as we get it ourselves or support someone with it.

I'll also second the use of vitamin D3 as it has given me over 3 years of CH pain free living (just wish it worked for my migraines too).

I noticed you said "...took an imitrex...". Are you taking tablets or using the injections or nasal sprays? We find that the injections or nasal sprays work a lot, lot better, being able to kill a CH in about 5 minutes (just like O2 can do).

Have you read the oxygen page? Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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LasVegas CH.com Sponsor Offline Episodic CH since 11 yrs old, now 50. Posts: 2020 north of the 60th parallel Gender:	Re: I can't live like this Reply #8 - Apr 30^th, 2015 at 12:42am It will get better and you have a wonderful support team right here on this message board. You are not alone! We understand your pain and struggles! -Gregg in Las Vegas
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Bob Johnson

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Re: I can't live like this
Reply #9 - Apr 30^th, 2015 at 9:50am

Way rural East or West? (I lived in Casar for 20 yrs.)
Your fortunate to get a Duke appt but if you're West, would Asheville or Winston Salem-Greensboro. Thinking in terms of travel distance for the long term relationship you will have with any headache doc. (Get back if you want to explore these areas. Can send a guide to looking for a headache specialist.)

Verap dosing should be high for Cluster; upwards of 400-800mg is not uncommon.

Imitrex injection is the only effective route for Cluster. Pills much too slow acting.

Suggest you ask your doc for a sample of the folowing. You'll know, with 2-3 uses, whether it works for you. Was a magic fix for me! And cheap cf. Imitrex!
===
Headache 2001 Sep;41(8):813-6

Olanzapine as an Abortive Agent for Cluster Headache.

Rozen TD.
Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and TWO PATIENTS BECAME HEADACHE-FREE AFTER TAKING THE DRUG. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE.

PMID 11576207 PubMed

--------------------------------------------------------------------------------

Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
=====
Very important that you get a solid diagnosis and not assume you have Cluster. There as many conditions which mimic Cluster but are not headache disorders. One reason to work with a headache specialist.
===

It will help us to direct you to good sources of assistance if you will tell us where you live (city & state, if U.S. or country). At the Home page: Help button-->Edit & Profile --> Location. (This will add your location, just below your name, every time you post a message.

Bob Johnson

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raindrops

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Re: I can't live like this
Reply #10 - Apr 30^th, 2015 at 6:41pm

This is all such great advice. I actually live in Cherokee, NC. But, I've learned I have to go way out of town for any good help. I do have a headache specialist in Asheville, but he does things that just don't make sense. Like he won't increase the Verapamil, and hasn't in a year. He didn't order the right mask for oxygen through insurance, so I had to make due with what I had. Even with the information here, it didn't convince him. He thought the flow rate was excessive. And, he only gives me 9 pills and 2 injections per month. He says that is the maximum safest dose. So, I usually make him prescribe them every month and stockpile. Even with breaking down the shots and the pills to stretch them out, I still have days where I can't get the relief I need. I've told him the pills were too slow, but he said I just need to take them sooner. I take them as soon as I feel the shadow!

I'm excited about Duke, because everybody says they are the best. I even muddled my way through some of their literature. The doctors there say that they can run tests over my summer vacation (thank God I'm a teacher). When I'm officially their patient, they can write my scripts, and they can communicate with emergency room staff here as needed. I just can't believe I suffered this long before I became proactive. I guess after 20 years, you just get used to it.

I want to thank everybody on this board for your support. When I posted my original messages, I think that I was as desperate as I have ever been. With the support and information on this board, I was able to finally get some relief. The Prednisone, while making me look like a big red balloon, has been an absolute godsend. I can feel the spectre sort of receding. Only two headaches today, and both a bit later than usual! So, progress.

Thank you all again, and I hope that I will be able to offer you support, comfort, and hope as you have done for me.

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Rumeke

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Westfield, NC
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Re: I can't live like this
Reply #11 - Apr 30^th, 2015 at 9:50pm

So happy the steroids are working for you and you are getting a break from the pain!

I use a Dr Paul Martin in Winston who is very good and treats a lot of cluster patients. I can usually get in to see him in a few days when I am in cycle if you want to give him a try while waiting on your July appointment. He pushed O2 (a Godsend), set my verapamil at 240mg twice a day and is cool with the D3 regimen or whatever works.

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TonyP134

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Re: I can't live like this
Reply #12 - Apr 30^th, 2015 at 10:32pm

Dear Raindrops!
I completely empathize with you! I have been on imitrex for a while and nine tablets a month doesn't cut it. Now I have a combo of Relpax and Imitrex just to get through the month! I have had two different procedures and nothing has reduced the CH's. My neurologist now is going to start Namenda to see if that reduces the headaches. It does get better. I am not giving up and hope Duke helps out! All the best!
Tony Wink

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Peter510 CH.com Alumnus Offline Don't give out... But don't give in. Posts: 966 Wexford. Ireland Gender:	Re: I can't live like this Reply #13 - Apr 30^th, 2015 at 11:06pm Hey Raindrops, Delighted to hear things are easing a bit for you. Your last few posts certainly have a much more positive and optimistic tone, which is great. Did you read up on Batch's D3 regimen? If so, whatcha think? Peter.
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Bob Johnson

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free." -Epictetus

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Kennett Square, PA (USA)
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Re: I can't live like this
Reply #14 - May 1^st, 2015 at 6:50am

It's sad to run into such a jerk!

While you are waiting for the Duke appt, explore for other docs closer to you. May open some options for long term care.
==

LOCATING HEADACHE SPECIALIST

1. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

2. Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

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

; On-line screen to find a physician.

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

Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

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

NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
=====================================================================
WHY A HEADACHE SPECIALIST IS RECOMMENDED

Headache. 2012 Jan;52(1):99-113.
Cluster headache in the United States of America: demographics, clinical characteristics, triggers, suicidality, and personal burden.
Rozen TD, Fishman RS.

THERE REMAINS A SIGNIFICANT DIAGNOSTIC DELAY FOR CLUSTER HEADACHE PATIENTS ON AVERAGE 5+ YEARS WITH ONLY 21% RECEIVING A CORRECT DIAGNOSIS AT TIME OF INITIAL PRESENTATION.

Bob Johnson

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BarbaraD CH.com Alumnus Offline Hugs to ya Posts: 8333 Douglasville, TX Gender:	Re: I can't live like this Reply #15 - May 1^st, 2015 at 8:22am Get on the D3 regimen while you're waiting. It won't hurt you and just might do some good. It's worked wonders for so many of us. What are you "waiting" for?
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Rumeke

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Westfield, NC
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Re: I can't live like this
Reply #16 - May 2^nd, 2015 at 9:58am

Raindrops

Call Dr Paul Martin
175 Kimel Park Dr, Winston-Salem, NC 27103
Phone:(336) 768-6347

Tell them you have been diagnosed with Clusters and are in the middle of a cycle and need help. He usually keeps some appts open for CH patients so he can see them asap. My family Dr actually got me in to see him the same day...and I had no insurance at the time. He didn't even charge me for the visit! A very caring experienced Dr who treats a lot of CHeads both episodic and chronic.

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winner19

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Re: I can't live like this
Reply #17 - May 9^th, 2015 at 3:50pm

Hey raindrops,
I know how you feel I have Chronic CH but I have found some improvement I guess its because of Vit D3 regimen and steroids. I don't have a job but I'm a student and it has put a drastic effect on my studies. My teachers support me a lot and ready to help me whenever I need help. They say I'm good student. Just hang in there friend you are not alone and you will get better

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Zishan CH.com Newbie Offline I Love CH.com! Posts: 1	Re: I can't live like this Reply #18 - May 20^th, 2015 at 1:35am I have had a almost similar history, very suffering. I thought i could find some solutions here, anybody who can help me?? Tomorrow i have an appointment with a dentist to check this out- a friend referred me, hope it helps. How di i make help request to everyone here. Anyone cured of cluster headaches.
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Mike NZ

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Oxygen rocks! D3 too!

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Auckland, New Zealand
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Re: I can't live like this
Reply #19 - May 20^th, 2015 at 3:55am

Hi Zishan and welcome

If you have CH then a dentist can not make the CH go away by doing anything to your teeth. Quite a few people have tried this route and have had teeth removed with no change to their CH.

You need to work with a headache specialist who will have the skills and experience to properly diagnose you and get you started on a preventive to cut down how many CH you get plus abortives to kill off CHs.

Start reading everything you can here and you'll soon now more than most doctors.

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kiritz

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Re: I can't live like this
Reply #20 - May 24^th, 2015 at 1:11am

There are a number of red flags in your post suggesting that you are not getting appropriate treatment for your headaches. First of all, oral imitrex hardly works for anyone. You need the subcutaneous self-injector. 4-6 mg. should abort a headaches within 10 minutes. It does so for most patients. Second, you need access to oxygen at at least 15 liters per minute through a rebreather mask. Again, 10-15 minutes aborts headaches for most sufferers. Finally, the standard of treatment for verapamil is to START with 80 mg three times a day and gradually increase the dosage. Periodically, you'll need an EKG to make sure no heart issues are emerging. Peter Goadsby, one of the world's leading researchers, gradually increases the verapami until levels as high as 960 mg daily. It is clear to me that you need a doctor who is more familiar with the standard of care currently available. Your typical GP will not necessarily know what to do, as cluster headaches are not seen every day in a general medical setting. Message me if you want more ideas. I am not a physician, just an experienced cluster headache patient.

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wsnurse

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Re: I can't live like this
Reply #21 - May 24^th, 2015 at 11:15am

Hi There,
I to understand what you are going through. I am a nurse, single mom with chronic CH . the last 8 weeks have been brutal.

3-5 CH a day. I take it d regiment, verapamil 720 mg, o2 12-15L and just finishing a prednisone taper, which took the edge off but only for a few days. parametric pressure change is really hard for me. I miss work, leave for a few hours and come in late. I have a great boss. I too stopped going out to movies, social functions, music and ANYWHERE too loud as this is a trigger. Nobody in my life really understands the debilitating pain. My teenage boys are tired of a unavailable mom. The time in between I take care of trying to maintain something normal, dinner, cleaning the house a shower. I dread grocery shopping..

It takes every ounce of energy some days just to follow a conversation and appear present. relationship gone....

I do know I can keep going be cause I have so many times before. I live for the CH 2-3 free hours IN BETWEEN CH a day I can do things and be present.
You are not alone and I understand.

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BarbaraD CH.com Alumnus Offline Hugs to ya Posts: 8333 Douglasville, TX Gender:	Re: I can't live like this Reply #22 - May 25^th, 2015 at 9:04am Well, I said it once and I'll say it again -GET ON THE D3 REGIMEN!!! And don't say it doesn't work ..it does for almost everyone on here who has done it correctly (send Batch a PM if you've got questions).
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