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New CH.com Forum › Cluster Headache Help and Support › Medications, Treatments, Therapies › So new at this and NO relief

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So new at this and NO relief (Read 12513 times)

lizardqueen420

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So new at this and NO relief
Jun 2^nd, 2013 at 3:40pm

Second topic posting. I'm beat, I can't get any relief of a headache, my head hurts to the touch. It hurts to type this out and my head is hammering at me, I'm a battering ram or ice pick - I was at the ER twice last week with little relief but I feel like I need to go again. My tablets of Sumatriptan are not working and I don't have an appointment with my family doc until the 12, my narcotics are a hit and miss - yesterday they didn't work so I have not been taking them today but that means then I have NOTHING to take. A shower only works as long as I am in there, I can only drink so much coffee, as well as bang my head against the wall for so long too without breaking the wall down. What do I do? I'm so absolutely tired! Undecided

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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: So new at this and NO relief Reply #1 - Jun 2^nd, 2013 at 6:21pm G'day, from down under. check out the message i just posted to. Re: God Help Me. Hoping this will help you. Hoppy.
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wimsey1

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Re: So new at this and NO relief
Reply #2 - Jun 3^rd, 2013 at 7:50am

You do state you have an upcoming appointment with your doc, and that you've been given suma pills. Please note the pills are nearly universally useless for CHs, as you are discovering. So, in advance of the appointment, call and complain loudly, and ask for injectable suma (imitrex) and while you're at it, push for an O2 Rx. You should at least get a nonrefillable Rx for the shots. They can be very effective in aborting a hit. Good luck and God bless. lance

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Bob Johnson CH.com Alumnus Offline "Only the educated are free." -Epictetus Posts: 5965 Kennett Square, PA (USA) Gender:	Re: So new at this and NO relief Reply #3 - Jun 3^rd, 2013 at 7:54am Please! Don't start another chain. It makes it so difficult to follow you when a new chain, on the same issues, pops up. === What is happening re. finding a headache specialist? It appears that your present doc doesn't have the skills needed
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lizardqueen420

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Re: So new at this and NO relief
Reply #4 - Jun 3^rd, 2013 at 10:38am

Sorry Bob, just thought I would get better luck under the correct category that was specific for CH.

So a update; last night right before bed I was BAD, I took 3 percocets and now I am paying for it. I am not with it, I am very groggy, irritable and still with a headache. I will make a call to the doctor and if I can't get in I will have to make the call on what to do - if I go to the ER or not. This has been going on a week and half already with no relief what so ever on my headache, migraine and cluster.

Have my massage that I am nervous about. Last monday evening I had a major 30+ episode after my massage so we will see what happens after todays...

Curious...if I am having both a migraine and cluster why would the suma tablets not work? Oh what frustration!

And, again apologies. Embarrassed

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lizardqueen420 CH.com Newbie Offline I Love CH.com! Posts: 23 Abbotsford, British Columbia Gender:	Re: So new at this and NO relief Reply #5 - Jun 3^rd, 2013 at 12:05pm Yeah, maybe lady luck does shine on me today? I am going to see my doctor in a hour, the blessed hour. Then off to the massage - maybe I will be able to sleep/nap today blessed wonders of all; we'll see if any miracles come of this appointment first. I'm armed with a headache specialist name and clinic.
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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: So new at this and NO relief Reply #6 - Jun 3^rd, 2013 at 12:37pm Just don't make miracles the main weapon in your arsenal. You'll suffer. A lot. Guaranteed.
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Bob Johnson

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Re: So new at this and NO relief
Reply #7 - Jun 3^rd, 2013 at 12:56pm

Working with both migaine and cluter poses some really complex issues around treatment. Your doctor just doesn't "taste" up to the task.

This may be a repeat but, find a headache specialist--not a general neurologist or pain clinic type. Track record for the last two types is grim.
==
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.
====
Pain meds for Cluster is a no-winner, often increases attacks and doesn't control the pain

Bob Johnson

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Mike NZ

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Oxygen rocks! D3 too!

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Re: So new at this and NO relief
Reply #8 - Jun 3^rd, 2013 at 3:56pm

lizardqueen420 wrote on Jun 3^rd, 2013 at 10:38am:

last night right before bed I was BAD, I took 3 percocets and now I am paying for it. I am not with it, I am very groggy, irritable and still with a headache.

You'll almost certainly be getting rebound CHs / migraines with the daily use of pain killers, showing how they are not an effective option for aborting headaches.

Really do push for oxygen as you can use it as often as you need.

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lizardqueen420

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Re: So new at this and NO relief
Reply #9 - Jun 3^rd, 2013 at 4:34pm

Well, I'm back from the doctor and the massage.

A little relief from a intramuscular Toradol shot? Anyone heard of that? The tablets and IV didn't work for me but this is working a little bit for me we'll see for how long.

As for Imitrex injections my doctors office only carries the spray and tablets - she wants to try the Toradol first and the Zomiptriptan tablets also won't give me a Rx for O2 - frustrated! All because ER doctor says its migraines and I told her he didn't even address the Cluster Headache symptoms! I kept my appointment for the 12th and I have to go back for more Toradol injections in the meantime, I'm beyond caring anymore - I know why they are called Suicide Headaches now!

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: So new at this and NO relief Reply #10 - Jun 3^rd, 2013 at 4:55pm Toradol just treats pain. It is an NSAID. It won't do much to prevent future attacks once it wears off.
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lizardqueen420

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Re: So new at this and NO relief
Reply #11 - Jun 3^rd, 2013 at 5:49pm

Except for the other dose I have. Wonderful, treated for pain but nothing long-term. I'm thinking that I might have to go to ER to get the proper script for Imitrex or maybe change doctors. So confused...Everyone here keeps saying Headache Specialist/Neurologist but I am from Canada and that only happens so fast especially when there is only 1 in all of BC and who knows how long that waiting list is Angry

. So I'll just keep plugging along and pestering Roll Eyes

my doctor until she gets sick of me Wink

and can't help prescribe me something to finally keep me away for good Grin

. We'll see if my plan works. Lips Sealed

What's up with the Welders Oxygen? Is that under our read up?

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lizardqueen420

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Re: So new at this and NO relief
Reply #12 - Jun 3^rd, 2013 at 6:43pm

You were right, the pain/headache is back. Took my first Zolmiptriptan a 1/2 hr ago as everyone says so far the tablets are not working for me AT ALL (Sumas or Zomig don't work either) just wish my doctor would dummy up and give me something that would cause me to be PAIN FREE.

Sugar-free Red Bull has Aspartame in it and that is known to cause a headache why would CHers take this? Is the abort worth the risk? Just trying to get a feel as Aspartame is REALLY bad for you but so is CH! Cry

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: So new at this and NO relief Reply #13 - Jun 3^rd, 2013 at 6:57pm I'm wondering if anyone has recommended the following thread to you: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or
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lizardqueen420 CH.com Newbie Offline I Love CH.com! Posts: 23 Abbotsford, British Columbia Gender:	Re: So new at this and NO relief Reply #14 - Jun 3^rd, 2013 at 7:07pm Yes, thank you and on day 3 of the regiment now. Told my GP today at appointment and she is on board so I will get her to test levels in a month. So far no difference, found a big difference when I upped levels to 5,000 over 4 years ago for my Celiac disease but it did take time.
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jon019

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Re: So new at this and NO relief
Reply #15 - Jun 3^rd, 2013 at 7:27pm

lizardqueen420 wrote on Jun 3^rd, 2013 at 6:43pm:

Sugar-free Red Bull has Aspartame in it and that is known to cause a headache why would CHers take this? Is the abort worth the risk? Just trying to get a feel as Aspartame is REALLY bad for you but so is CH! Cry

Hi lq,

Not all sugar free energy drinks use aspartame...many use sucralose...and 5 hour energy shots (2 oz bottles) has neither. Ya just gotta read the labels (aspartame is definitely a trigger for me)......

Best

Jon

The LARGE print giveth....and the small print taketh away. Tom Waits

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Brew

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Re: So new at this and NO relief
Reply #16 - Jun 3^rd, 2013 at 8:24pm

Quote:

...found a big difference when I upped levels to 5,000 over 4 years ago for my Celiac disease but it did take time.

It took me two months before I settled comfortably in the sweet spot (60-110 ng/mL). Here's how it went:

2 weeks at 20,000iu/day

2 weeks at 20,000iu/day WITH a 50,000iu loading dose once a week.

2 weeks at 15,000iu/day

2 weeks at 10,000iu/day

Been at 10,000iu/day and pain free for over a year.

You might want to consider increasing the dosage dramatically for the first couple of weeks.

"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so." --Ayn Rand

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Mac CH.com Old Timer Offline Vitamin D3 Rocks! Posts: 307 Edmonton,Alberta,Canada Gender:	Re: So new at this and NO relief Reply #17 - Jun 3^rd, 2013 at 11:27pm I found a list of 48 Neurologists In B.C. at this link. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or
Back to top	"We hang the petty thieves and appoint the great ones to public office". - Aesop &&portfolio Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or IP Logged

lizardqueen420

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Re: So new at this and NO relief
Reply #18 - Jun 4^th, 2013 at 12:07am

Wow, thanks Mac. There were extra ones, only problem they are not headache specialists but I might have to try them first before going to Vancouver as transportation isn't the easiest for me, funds and babysitters for daughter and funds for that too.

OK, tried my first Red Bull, made my headache a shadow for awhile but it tasted like carbonated cough syrup. I hated it! I'm going to try a 5 hour energy next time.

You guys are all are so helpful. Brew with the D3 regiment you have found that works, what do you mean by 50,000 loading dose?

Thinking I may need to change doctors but a Neurologist/headache specialist can change that I think. I remember when I had to suffer before getting diagnosed with Celiac disease, sometimes it takes the medical field awhile to admit to technologies that will work. So I will probably get the proper treatment eventually but it will take me time to get there unfortunately that is Canada's failing health care system for you.

Cheers Cheesy

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slpierce1988

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Re: So new at this and NO relief
Reply #19 - Jun 4^th, 2013 at 1:18am

I also have both migraine and cluster.

I had never tried sumatriptan before I started getting clusters, just Maxalt (rizatriptan) for my migraines which worked, and continues to work, wonders. Now that I have clusters, I also use the sumatriptan injections, which, consequently, works wonders for the clusters.

On that note, the suma does nothing for my migraines, and the Maxalt does nothing for my clusters (even if it is a long-lasting cluster). I'm not suggesting that sumatriptan doesn't work for others' migraines. I am suggesting that, for a cluster, I would not trust anything that requires swallowing to abort the attack. But that is just my opinion. Sometimes you have to take what you can get, unfortunately.

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: So new at this and NO relief Reply #20 - Jun 4^th, 2013 at 7:06am Quote: ...what do you mean by 50,000 loading dose? Exactly what it says. Once a week I would take 50,000iu instead of the daily 20,000iu for that day.
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wimsey1 CH.com Alumnus Offline I Love CH.com! Posts: 2457 MA Gender:	Re: So new at this and NO relief Reply #21 - Jun 4^th, 2013 at 7:26am Quote: What's up with the Welders Oxygen? We have several posts on welder's O2. Do a search and take notes. You can set yourself up and bypass a stubborn doctor. Just note you will need to purchase your own regulator and mask. God bless. lance
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lizardqueen420

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Re: So new at this and NO relief
Reply #22 - Jun 4^th, 2013 at 1:39pm

Looked into the Welders O2 Thanks again.

My right eye is red and watery today as well my nostril. Is it common to have LOTS of cluster attacks? I even had one IN the shower. I have ANOTHER doctors appointment tomorrow for the Toradol and a referral, this is ridiculous. I can't live like this anymore. Also very dizzy and nauseous today.

My husband will be the guy that looks into the Welders O2 for me, I'm not the woman for that. (I can barely type this my hands are shaking so badly and my head and eyes hurt).

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slpierce1988 CH.com Newbie Offline I Love CH.com! Posts: 23	Re: So new at this and NO relief Reply #23 - Jun 4^th, 2013 at 4:14pm If you got a cluster in the shower, was the water fairly warm/hot? Heat = vasodilation. Showers usually trigger one for me.
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Kevin Z

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Re: So new at this and NO relief
Reply #24 - Jun 4^th, 2013 at 6:41pm

I just wanted to know if you have beed tested for sleep apnea? And also how many others have beed tested/diagnosed with sleep apnea? I think I know whats causing our clusters. It seems that most ppl have them during the night or a really bad one in the morning. From experience I know that when I had a really bad one NOTHING helped to stop the pain. But there are preventative measures that you can take an DON'T give up on them too early. Batch has a thread on taking vitiman D3 and omega 3 fish oil, this sould help the inflammation.

I believe the headaches are caused by the lack of oxygen in the bloodstream, while your asleep the muscles still burn ATP but at 1/3 the rate, what happins is the lack of oxygen starves your muscles and tendons and ligaments which dosen't allow the muscles to burn the ATP but instead burn glycogen which causes lactic acid build up in your body. Which in turn causes inflammation. This is why oxygen therapy works for most CH sufferers. 1. Because short trem oxygen helps the body to produce endorphins and 2. long term will help increase blood o2 levels which should decrease inflammation form lactic acid build up. So if you don't have oxygen do deep breathing exercises before you sleep and when you wake, also a humidifier will help your lungs to absorb o2 faster and more effeciently especially if you live in a dry climate. Careful of any foods that cause inflammation and stay off sodas and caffeine. Caffeine will help short term because it helps you to produce endophins but long term it will dehydrate you and make your body use more oxygen. And when you get some relief do some biofeedback and sensory deprivation and see if your body will tell you where your pain is coming from, you dont want to do it while your in pain though cause its hard to focus. I hope you find relief soon and i hope this helped.

Also does anyone else have fatigue and joint aches along with the headaches?

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