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firefightercharlie CH.com Newbie Offline I Love CH.com! Posts: 1	No relief found Jan 2^nd, 2011 at 3:01pm I have been having headaches for over 15 months. After several tests the Dr put me on verapamil. He has increased it to the max dose but no relief.It has caused my BP to spike and he says the drug won't do that anyone else had this happen?
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bejeeber

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Re: No relief found
Reply #1 - Jan 2^nd, 2011 at 3:21pm

I'll let others advise you on Verapamil, but it sounds like you may be in a very common predicament - the "lousy doctor" factor. As a general rule doctors don't know how to treat CH.

Fortunately we have banded together here though and many of us have found really effective ways to fight off CH thanks to the info and advice found here.

Your'e a firefighter?!! Man I bet you have easy access to oxygen with a demand valve type system! Funny how a solution is hiding right in front of us sometimes. please go directly to the oxygen info link over there to the left of this page, and read up about it, then get on that O2 at the onset of your very next attack and huff/hyperventilate away in order to abort it - probably within minutes!

Then please hang around, research, and ask questions, so you can figure out your best comprehensive plan of attack, and if you continue working with a doctor, hopefully find a headache specialist.

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« Last Edit: Jan 2^nd, 2011 at 4:57pm by bejeeber »

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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Bob Johnson

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free." -Epictetus

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Re: No relief found
Reply #2 - Jan 2^nd, 2011 at 3:52pm

There are many disorders which appear to be cluster headache but which arise from other disorders. That the Verap. hasn't help suggests that you need a more comprehensive work-up to eliminate other possible causes for the headaches..
===
LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. 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.

3. 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.

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

or

; On-line screen to find a physician.

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

or

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.

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

or

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.

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Bob Johnson

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Guiseppi

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Re: No relief found
Reply #3 - Jan 2^nd, 2011 at 4:05pm

Bob and Jeeber both make good points. Next time an attack starts, grab the green tank with the demand valve and start huffing away. The keys to oxygen therapy, your lungs must get ONLY 100% 02, no outside air, no exhaled air, nasal canulas and rebreather masks do not work. Demand valve or a non re breather mask at a minimum flow rate of 15 LPM, preferably higher. Start huffing at the first sign of an attack, I can abort in 6-8 minutes.

I use an old paramedic push button regulator. I'm a retired deputy, used to go to the FD to abort my attacks, they gave me one of their old push buttons, works sweet!

Bob makes an EXCELLENT point. The brain is a complex organism! (I know, duh!) Wink

It's critical you get a good work up and an accurate diagnosis to have the best chance at a succesful treatment regimen. The good news is, if it is CH, you've only just begun to scratch the surface of the available treatment options.

Good luck on your diagnostic journey, if the 02 works to abort, that'll be a big step towards your diagnsois, keep us posted!

Joe

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seaworthy CH.com Hall of Famer Offline Posts: 706	Re: No relief found Reply #4 - Jan 3^rd, 2011 at 7:21am Quote: As a general rule doctors don't know how to treat CH. No longer true if you do your homework.
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wimsey1

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Re: No relief found
Reply #5 - Jan 3^rd, 2011 at 9:00am

seaworthy wrote on Jan 3^rd, 2011 at 7:21am:

Quote:

As a general rule doctors don't know how to treat CH.

No longer true if you do your homework.

Not to speak out of turn here (OK, I will) but I think bejeeber and you are saying the same thing, if by homework you mean finding a good headache specialist, or even if you mean self-educating and then respectfully educating your own doctor. We still get a lot of nonsense and outdated opinions expressed by doctors who really never dealt with CHs. Just think of how many times we hear about both drs and insurance companies balking at prescribing O2. But I agree, I think things are picking up largely due to communities such as this. Blessings! lance

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seaworthy CH.com Hall of Famer Offline Posts: 706	Re: No relief found Reply #6 - Jan 3^rd, 2011 at 9:39pm No we are not saying the same thing. I dont believe that as a "general rule" that "doctors don't know how to treat CH." Was once true but not so much any more. In the last 10 years or so I have had to switch Doctors 3 or 4 times for various reasons. Each of those new Docs were CH educated and/or open to cutting edge treatments.
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wimsey1

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Re: No relief found
Reply #7 - Jan 4^th, 2011 at 8:14am

seaworthy wrote on Jan 3^rd, 2011 at 9:39pm:

No we are not saying the same thing. I dont believe that as a "general rule" that "doctors don't know how to treat CH."

Was once true but not so much any more.

In the last 10 years or so I have had to switch Doctors 3 or 4 times for various reasons. Each of those new Docs were CH educated and/or open to cutting edge treatments.

Hmmm...Okeydokey. I'm glad you have had such good medical intervention, and drs who are knowledgable. That hadn't been my experience until I sought out a headache specialist. In fact, the drs I saw both as a GP and in the ER were much more interested in how "it felt" than they were in learning more about the disease. For many of them, I was the first and only CH they ran across. So all I'm sayin' is: if your dr isn't CH knowledgable, find one who is; and, this ought not substitute for one being personally knowledgable about CHs. Blessings. lance

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: No relief found Reply #8 - Jan 4^th, 2011 at 11:42am It was my GP who wrote the R_x for O₂ I still have on file with Apria - some 20 years ago. Guess I'm one of the fortunate few.
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seaworthy CH.com Hall of Famer Offline Posts: 706	Re: No relief found Reply #9 - Jan 4^th, 2011 at 5:26pm I recently went to an allergist for some sinus issues I have been having. He was extremely knowledable regarding Ch which came as somewhat of a surprise and indicates to me that Doctors "as a general rule" are no longer ignorant of CH.
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thebbz

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Re: No relief found
Reply #10 - Jan 4^th, 2011 at 5:46pm

Some are good, some are not. Some know about CH. Some do not. And now back to our program.
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Quote:

Verapamil may cause side effects. Tell your doctor if any of these symptoms are severe or do not go away:

constipation

heartburn

dizziness or lightheadedness

headache

Some side effects can be serious. If you experience any of the following symptoms, call your doctor immediately:

swelling of the hands, feet, ankles, or lower legs

difficulty breathing or swallowing

slow heartbeat

fainting

blurred vision

rash

nausea

extreme tiredness

unusual bleeding or bruising

lack of energy

loss of appetite

pain in the upper right part of the stomach

yellowing of the skin or eyes

flu-like symptoms

fever

If you experience a serious side effect, you or your doctor may send a report to the Food and Drug Administration's (FDA) MedWatch Adverse Event Reporting program online [at Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

or by phone [1-800-332-1088].

What storage conditions are needed for this medicine?
Keep this medication in the container it came in, tightly closed, and out of reach of children. Store it at room temperature and away from excess heat and moisture (not in the bathroom). Throw away any medication that is outdated or no longer needed. Talk to your pharmacist about the proper disposal of your medication.

In case of emergency/overdose
In case of overdose, call your local poison control center at 1-800-222-1222. If the victim has collapsed or is not breathing, call local emergency services at 911.

Symptoms of overdose may include:

dizziness

blurred vision

slow, fast, or irregular heartbeat

seizures

confusion

difficulty breathing or swallowing

What other information should I know?
Keep all appointments with your doctor and the laboratory. Your blood pressure should be checked regularly to determine your response to verapamil. Your doctor may also order certain lab tests to check your body's response to verapamil.

If you are taking certain extended-release tablets (Covera HS), you may notice something that looks like a tablet in your stool. This is just the empty tablet shell, and this does not mean that you did not get your complete dose of medication.

Do not let anyone else take your medication. Ask your pharmacist any questions you have about refilling your prescription.

It is important for you to keep a written list of all of the prescription and nonprescription (over-the-counter) medicines you are taking, as well as any products such as vitamins, minerals, or other dietary supplements. You should bring this list with you each time you visit a doctor or if you are admitted to a hospital. It is also important information to carry with you in case of emergencies.

Other names
Iproveratril Hydrochloride
In this page
Why is this medication prescribed?
How should this medicine be used?
Other uses for this medicine
What special precautions should I follow?
What special dietary instructions should I follow?
What should I do if I forget a dose?
What side effects can this medication cause?
What storage conditions are needed for this medicine?
In case of emergency/overdose
What other information should I know?
Other names
Brand names
Brand names of combination products

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Guiseppi

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Re: No relief found
Reply #11 - Jan 4^th, 2011 at 5:57pm

Started at age 12 diagnosed at age 20, if thats not bad doctors idk what is. But here my rant ends. I hope to rely on you guys in the future, as the only consolation upon finding out i have this persistant condition is the thought of support from others. This site is amazing. Thank you fellow clusterheads.

From a first time poster today. As long as I keep seeing newbies post this, and it's damned near a daily occurence, I'm going to have to side with Lance. We have a LONG way to go in the education department. I will continue to push newbies to seek out a Headache specialist neurologist, to have the best shot at an accurate diagnosis and an effective treatmnet regimen.

Joe

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thebbz

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Re: No relief found
Reply #12 - Jan 4^th, 2011 at 7:04pm

Quote:

Started at age 12 diagnosed at age 20, if thats not bad doctors idk what is. But here my rant ends. I hope to rely on you guys in the future, as the only consolation upon finding out i have this persistant condition is the thought of support from others. This site is amazing. Thank you fellow clusterheads.

From a first time poster today. As long as I keep seeing newbies post this, and it's damned near a daily occurence, I'm going to have to side with Lance. We have a LONG way to go in the education department. I will continue to push newbies to seek out a Headache specialist neurologist, to have the best shot at an accurate diagnosis and an effective treatmnet regimen.

Joe

Your so cool sarge, I couldn't agree more. It only took me about 10 GP's and 3 neuro's right at 14 years to get a diagnosis. I didn't get treatment till I came here. Wink

the bb

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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: No relief found Reply #13 - Jan 4^th, 2011 at 7:09pm My OTHER brother from a different mother! Love you BBzzzzz! Joe
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bejeeber

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Re: No relief found
Reply #14 - Jan 4^th, 2011 at 7:16pm

Glad to hear that some doctors are knowledgeable or "open", but my experience plus the constant, incessant stream of people appearing here that have been ill treated/diagnosed by doctors gives me the very distinct impression that doctors as a general rule do not know how to treat CH.

If we agree that high flow 100% O2 is one of the very best abortives, and the absolute winner in the non-toxic abortives category, then any doctor who knows how to treat CH should offer this, right? How many here have had a doctor volunteer such a prescription?

Seaworthy? Any of your docs volunteer 100% high flow O2?

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« Last Edit: Jan 4^th, 2011 at 9:37pm by bejeeber »

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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seaworthy CH.com Hall of Famer Offline Posts: 706	Re: No relief found Reply #15 - Jan 5^th, 2011 at 6:28am Quote: Seaworthy? Any of your docs volunteer 100% high flow O2? All of them and the allergist suggested it.
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37-41withrestrictions

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Re: No relief found
Reply #16 - Jan 15^th, 2011 at 5:15am

[font=Comic Sans MS][/font][color=#0000ff][/color]

I'm unsure if I can just join into a discussion as only registered with this site this week!

I live in the UK and have to say that the treatment I have received in relation to GP's seems to mirror whats being said, I think my referral to the neurologist was done because the Dr was fed up with me!!! and didn't know what else to do!
However my neurologist has been great and discussed O2 therapy very early on but she wants to try me on meds 1st, I am on verapamil and have recently had the dose increased to the max but I'm still getting clusters Embarrassed

and have recently noticed an irregularity in my heartbeat... back to the docs for me I think!
I also take sumatriptan at the onset of an attack but it absolutely floors me.
I have to say I have had 2 nights without an attack but know its only a matter of time

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If you see something you want.. reach out and grab it with both hands.....just watch out you dont get a smack in the chops for grabbing the wrong thing!!!

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Mike NZ

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Oxygen rocks! D3 too!

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Re: No relief found
Reply #17 - Jan 16^th, 2011 at 4:18am

37-41withrestrictions wrote on Jan 15^th, 2011 at 5:15am:

[font=Comic Sans MS][/font][color=#0000ff][/color]

I'm unsure if I can just join into a discussion as only registered with this site this week!

I live in the UK and have to say that the treatment I have received in relation to GP's seems to mirror whats being said, I think my referral to the neurologist was done because the Dr was fed up with me!!! and didn't know what else to do!
However my neurologist has been great and discussed O2 therapy very early on but she wants to try me on meds 1st, I am on verapamil and have recently had the dose increased to the max but I'm still getting clusters Embarrassed

and have recently noticed an irregularity in my heartbeat... back to the docs for me I think!
I also take sumatriptan at the onset of an attack but it absolutely floors me.
I have to say I have had 2 nights without an attack but know its only a matter of time

Of course you can join in any discussion, don't worry about only having been registered a week.

Verapamil is a good preventive, but it isn't 100% effective so you'll always get some CHs, however a lot less than you were having before you started taking it. It can also take a week or so to become effective, so don't expect instant results.

I'd really work on convincing your neuro to let you have oxygen to abort CHs that do happen. It's really so much less harsh on your body than sumatriptans and it won't "floor" you.

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bejeeber

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Re: No relief found
Reply #18 - Jan 16^th, 2011 at 12:15pm

seaworthy wrote on Jan 5^th, 2011 at 6:28am:

Quote:

Seaworthy? Any of your docs volunteer 100% high flow O2?

All of them and the allergist suggested it.

Really? All of your doctors volunteered (as in suggesting it without you needing to request it) O2 with either a demand valve system or an optimask type non-rebreather mask with a high flow regulator that goes to at least 25 LPM?

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« Last Edit: Jan 17^th, 2011 at 1:17am by bejeeber »

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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BigCoffinHunter CH.com Veteran Offline The man in black fled across the desert Posts: 204 x0\|Schenectady\|USA\|\|0\|0\|NY,New_York	Re: No relief found Reply #19 - Jan 16^th, 2011 at 5:53pm Just an aside, where do you find a company that can supply a 25lpm regulator? I had to contact several O2 companies before finding one that could provide a 15lpm regulator.
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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: No relief found Reply #20 - Jan 16^th, 2011 at 8:43pm I find them on E-Bay and craigs list. My wife recently found me one that goes to 45 LPM, fits my E-Tanks, $20 on E-Bay. Joe
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bejeeber

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Re: No relief found
Reply #21 - Jan 17^th, 2011 at 1:16am

It may be worth your while to seek out a 45 LPM like Joe's.

I know I have to hit it at 45 LPM when in peak cycle in order to abort an attack.

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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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E-Double

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Are we ourselves?

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Re: No relief found
Reply #22 - Jan 17^th, 2011 at 7:15am

Do you have a diagnosis of CH?

Disregard all of the banter...
Yes oxygen is damn important!
A good doctor is important!!
Verapamil is a first line preventative medication for CH.

Those who do not have CH may have come across Verapamil when they have high blood pressure

You said it caused a spike in your BP...are you taking anything else?

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I can't believe that I have to bang my Head against this wall again. But the blows they have just a little more Space in-between them. Gonna take a breath and try again.

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