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tucki

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my husband has cluster
Jun 7^th, 2011 at 9:08am

Hi,

my name is Anke, i live in germany and my english is terrible Smiley

.
My husband has been suffering for almost 11 years to cluster. we want to spend our honeymoon in the U.S.. I wanted to ask whether there is in San Francisco a headache clinic or a doctor who will help us in an emergency. In Germany, he can confirm the cluster by his doctor if this is important for the doctors in San Francisco.
Incidentally, we already flying on 10.06. 6.00 am (German time) and go back on 25.06.
Medicine is allowed on the plane? I think this unfortunately nothing on the web.
I hope you can help us!!

Another question:
Is there a list with current research in the United States? in Germany mainly migraine is investigated right now. I am happy about any current message in the research.

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Bob Johnson

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Re: my husband has cluster
Reply #1 - Jun 7^th, 2011 at 10:39am

LOCATING HEADACHE SPECIALIST

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

2. Yellow Pages phone book [this is a telephone directory in the U.S. which shows businesses, professions.]: 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.

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On-line screen to find a physician.

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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.

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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.
====
Medicine can be carried on the plane but it would be best to have a letter from your doctor which: identifies your husband by name; lists the diagnosis; identifies the medicine which you will be carrying with you. This will also make it easier to pass through U.S. customs.

If he is using a medication in pill form there will be less possible questioning than if he has an injection form of medicine.

Please respond if this is not clear or adequate information.

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« Last Edit: Jun 7^th, 2011 at 10:41am by Bob Johnson »

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Kevin_M

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Re: my husband has cluster
Reply #2 - Jun 7^th, 2011 at 1:39pm

tucki wrote on Jun 7^th, 2011 at 9:08am:

In Germany, he can confirm the cluster by his doctor if this is important for the doctors in San Francisco.

I might think that would be helpful, and maybe recommending administering oxygen at something like 15 lpm.

Quote:

Medicine is allowed on the plane?

This is from a U.S. site:

Quote:

Disability-related items permitted through the security checkpoint include:

Medications and associated supplies

we are continuing to permit prescription liquid medications and other liquids needed by persons with disabilities and medical conditions. This includes:

All prescription and over-the-counter medications (liquids, gels, and aerosols) including petroleum jelly, eye drops, and saline solution for medical purposes;
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« Last Edit: Jun 7^th, 2011 at 1:42pm by Kevin_M »

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tucki

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Re: my husband has cluster
Reply #3 - Jun 7^th, 2011 at 3:21pm

Hi,

thanks for your quick answer!

My husband has a meeting this thursday with his doctor. she is a specialist in chlusterheadache. 2 years ago we found the doctor. before we found her, he do not know what this pain is. last year was the last attack and the first time he take oxigen. but the oxigen do not help Cry

We also have a yellow page phone book (in german "Die gelben Seiten") I will search there, tanks

I don´t know what my husband get from the doctor. I think she will give him some medication and don´t give him oxigen. When oxigen do not help last time, did it help now?

Is my question ok in this thread? I can ask in another new thread, if it is better.

I will read some information here, I want more information about cluster and my english can only be better Grin

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bejeeber

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Re: my husband has cluster
Reply #4 - Jun 7^th, 2011 at 5:08pm

Hi Tucki,

Unfortunately O2 is usually prescribed in a pretty ineffective way, which is low liter flow/ rebreather. I'm guessing that's how your husband has tried it so far.

The chances of success are MUCH greater with high liter flow 100% O2, and details about that can be found in the oxygen info link to the left of this page.

One thing about headache specialists in the US: they often require a CH patient in crisis to wait months for an appointment. Shocked

If your husband has his prescription(s) with him though, hopefully there would be no need for him to go to a US doctor. Cool

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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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Linda_Howell

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Re: my husband has cluster
Reply #5 - Jun 7^th, 2011 at 6:16pm

Willkommen auf dem sie Anke,

Your English is just fine. San fransisco, Ca. just happens to be home to one of our most prominent Dr.s in the treatement of cluster headaches. Dr. Peter Goadsby.

His e-mail address:
goadsbyp@neurology.ucsf.edu

His phone number to make an appointment:

415) 353-8393

He usually answers his e-mail, so if I were you I would send him an e-mail about 2 weeks before you intend to be there and give him the reason why you may need to see him. Let him know you came to this site for the information because he knows all of us and will be speaking at our O.U.C.H in July.

Ich wünsche Ihnen viel Glück und herzlichen Glückwunsch zu Ihrer Hochzeit.

Linda

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Hurt people.....hurt people. Think about it.

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tucki CH.com Newbie Offline I Love CH.com! Posts: 12	Re: my husband has cluster Reply #6 - Jun 8^th, 2011 at 7:39am Thanks for the info. The answer will help me Thank you for congratulation we married last year in july i learned english in school. It is 11 years ago and I try the best We have a son, he is 2 years old. My husband became the cluster when he was 16 years old. Could our son also became cluster?
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wimsey1

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Re: my husband has cluster
Reply #7 - Jun 8^th, 2011 at 8:32am

Greetings, tucki. When I was last in Germany (Gross Zimmern) I could not find any source of Oxygen other than those little cans. Too little and too costly. Since then, Batch has informed me he knows how to get O2 when in Germany. So it is around, and it is the best, but you can't travel with it on the plane. For that you may need a nasal spray form of sumatriptan or DHE. Point is, if Batch can get O2 while in Germany, I betcha a German can get O2 from the same source while here in the states. He's on line here a lot and if you write him, he'll get back to you. As to your question, yes, it is possible this is genetic and can be passed along, but it is not a certainty as far as I know. Deal with what is in front of you. There are enough worries for today. Have fun while here and enjoy your time in the states. God bless. lance

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tucki

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Re: my husband has cluster
Reply #8 - Jun 8^th, 2011 at 8:56am

Hi, i hope you had enjoy Germany

(how do you say the past? Embarrassed

)

my husband has a big oxigenbottle, like thise one in a hospital. I will tell him your info, maybe it is the wrong oxigen. I also will aks Batch what he would do. I remember last time my husband take imigran, but the cluster came back 4 hours after the injektion, maybe sumatriptan will work. We find something which will help him, I´m confident

I guessed that Max could get it. But we hope, that he will not get it!

If the people there only half as nice as you, we will have a great honeymoon Smiley

(I hope you understand me Cheesy

)

Is anyone of you flew in phase with cluster? Have you tipps for us? 14 hours fly... it will be a challange

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« Last Edit: Jun 8^th, 2011 at 10:41am by tucki »

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bejeeber

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Re: my husband has cluster
Reply #9 - Jun 8^th, 2011 at 1:36pm

tucki wrote on Jun 8^th, 2011 at 8:56am:

I remember last time my husband take imigran, but the cluster came back 4 hours after the injection, maybe sumatriptan will work.

That is fairly common for the attack to come back after 4 hours, unfortunately. It's one of the reasons this imitrex (imigran) tip is so critically important to be aware of - especially on a long flight:
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This could make it possible for your husband to abort multiple attacks with just one injector's worth of imigran on a long flight.

And just so you know, sumatriptan and imigran are the same thing.

Some of us in the US believe the 'friendliness factor' of the general public differs from region to region. I know that Seattle (in the northwest) and Nashville (in the south) are two places I've lived where folks are pretty friendly.

No comment about New York City. Cheesy

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« Last Edit: Jun 8^th, 2011 at 1:37pm 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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tucki CH.com Newbie Offline I Love CH.com! Posts: 12	Re: my husband has cluster Reply #10 - Jun 8^th, 2011 at 2:34pm My husband could have multiple attacks in the plain, but this could be abort with one injektion? I will whrite you tomorrow what his Doctor said and what he get from her. Interesting... both are the same thing. thanks for the link, I will read it tomorrow. It's too late for a proper translation
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Mike NZ

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Oxygen rocks! D3 too!

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Re: my husband has cluster
Reply #11 - Jun 8^th, 2011 at 3:36pm

tucki wrote on Jun 8^th, 2011 at 8:56am:

Is anyone of you flew in phase with cluster? Have you tipps for us? 14 hours fly... it will be a challange

I have had no problems whilst flying with 41 flights so far this year, although most of them were under an hour, with only two 7 hour flights.

You should be able to take imitrex with you on the flight, but do check with your airline.

Ich habe kein Problem mit deine Englisch. Es ist viel besser als mein Deutsch.

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tucki CH.com Newbie Offline I Love CH.com! Posts: 12	Re: my husband has cluster Reply #12 - Jun 8^th, 2011 at 3:46pm Thanks for answer Your German is very good! We will check with the Airline. We want a "pass" from the doctor, I think it could be help.
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bejeeber

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Re: my husband has cluster
Reply #13 - Jun 8^th, 2011 at 5:11pm

tucki wrote on Jun 8^th, 2011 at 2:34pm:

My husband could have multiple attacks in the plain, but this could be abort with one injektion?

It's more like he could give himself partial dose injections (which are still very effective), so the amount of medicine contained in one syringe could abort 2 or 3 attacks for him, and he wouldn't be in danger of overdosing or anything. This could be something to take into consideration when the doctor is deciding on what form of imigran to prescribe.

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« Last Edit: Jun 8^th, 2011 at 5:12pm 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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deltadarlin CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 3823 Downsville LA Gender:	Re: my husband has cluster Reply #14 - Jun 8^th, 2011 at 8:01pm You are flying over her on June 6, correct? Go ahead and e-mail Dr. Goadsby, if you haven't already. Maybe if you're lucky, one of the clusterheads in the SF area will pop in here and see your post. carolyn
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wimsey1

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Re: my husband has cluster
Reply #15 - Jun 9^th, 2011 at 7:49am

Quote:

maybe it is the wrong oxigen

Not likely, but...it needs to be 100% pure O2 and not a mixture of room air and O2. Also, the flow rate should really be higher than many standard O2 regulators allow. Most will only go up to 10 or 12 liters per minute. We want 15-25 liters per minute, or more. And the mask should be a nonrebreather mask...one that will not allow room air in while breathing in.

You really need to check with your airline about taking an injectable needle on board with you. They may not allow it; I'm not sure. But...you can take an imitrex nasal spray with you, or something here called Migranal nasal spray. Both work pretty well and fast.

By the way, the past tense of "enjoy" is "enjoyed." And yes, I have enjoyed all my trips to your beautiful country. My wife was born in Dieberg, and we stay with her family. Blessings! lance

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tucki

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Re: my husband has cluster
Reply #16 - Jun 9^th, 2011 at 8:35am

Hi,

we talked about the Oxigen yesterday. The O2 is ok, it is a big bottle 10l and 200bar (100% O2). The mask is the right one and he takes 15l per minute (it is regular up to 25l per minute).
He took the oxygen for 20 minutes and broke off. We did not know that O2 longer than 20 minutes may be inhaled.
Next time he will take more than 15l per minute. He will not break up the inhalation before the attack stopped. Maybe it was the mistake.

My husbands doctor give him 4 medication, a nasal spray, frovatriptan, verapamil and cortison. The O2-bottle is full, so we didn´t need a new one.

Well, I can not speak good English, but read and write works better. Positive side effect to write in a english forum Grin

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Kevin_M CH.com Sponsor Offline withered branches grow green again. Posts: 8754 Michigan, USA Gender:	Re: my husband has cluster Reply #17 - Jun 9^th, 2011 at 2:00pm tucki wrote on Jun 9^th, 2011 at 8:35am: My husbands doctor give him 4 medication, a nasal spray, frovatriptan, verapamil and cortison. Is the nasal spray imitrex (imigran)? That would be fine to bring. Is the preventive verapamil helping to reduce the number of cluster attacks?
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tucki CH.com Newbie Offline I Love CH.com! Posts: 12	Re: my husband has cluster Reply #18 - Jun 9^th, 2011 at 9:19pm I don´t know... sorry, our taxi will come in 10 minutes... I will answer until we are back in germany thank you @all!!!
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tucki

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Re: my husband has cluster
Reply #19 - Jun 28^th, 2011 at 3:12am

Hi,

we are back in germany and we don´t wanna stay here Cry

... it is so great in america!!

The time was great! The amarican people are friendly and nice! We fell in love Smiley

back to topic...
we tought my husband will be attacked, but nothing happened! Smiley

He had cold attacks (kalte Attacken), all symptoms but no pain. His eye became red, the nose was running (did you say "running nose" ? I don´t know how I explain it), but no pain.
It wasn´t the right time for cluster. Normaly he will be attacked in autumn. We were worried about the flight, because the cold attacks came some days before we flew. I think the attacks will come in autumn and maintain their normal rhythm.

thank you all. I will stay here... you are very nice and my english getting better in this blog Grin

maybe researcher found something which will help all of you!

I wish all of you a painfree future!!! I hope something will be found what kills the damon in your head!!! Kiss

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wimsey1 CH.com Alumnus Offline I Love CH.com! Posts: 2457 MA Gender:	Re: my husband has cluster Reply #20 - Jun 29^th, 2011 at 8:11am Welcome back, tucki. I'm so glad you and your husband had a pain free visit to America. Yes, it is a beautiful country, but I found Germany so as well. Keep us informed and read the site. Jump in to help others. It's why we're here. God bless. lance
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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: my husband has cluster Reply #21 - Jun 29^th, 2011 at 8:41am So thankful the trip home was uneventful! Stick around, your education will be ongoing. Thanks again for being such a proactive supporter. Joe
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