Hey all!

This is my first post here.  I have had CH for almost ten years now (since I was 18), and have just found this wonderful site!!  

Cycle just started last night with a vengeance after almost a year of dormancy.  Usually I start off at about a 5 or 6 on the pain scale towards the beginning of my cycle, but wow, last night I had three that peaked at 8-9!! Mine usually last about 8-10 weeks.  Looks like this is gonna be a bad one.  Anyone else out there from the Middle Georgia Area that can recommend a good neurologist or physician (that won’t try to tell me about their migraines that are “just like what I have”!!)?  

Also, I am for the first time considering the sumatriptan injections, which I have not put on the table in the past because I am prone to heart palpitations anyway.  Anyone ever had heart problems from the injections?  

Anyway, any advice from the Middle GA area would be much appreciated, and it would be good to know someone else here who does “know exactly what I am going through” (If only I had a dollar for every time I have heard that I could have funded a cure for CH already!  :))  

hi,welcome to the forum


I have a history of various heart arrhythmias / palpitations and have had surgeries for it and now have a pacemaker.

I've never had an arrhythmia / palps from taking a triptan, I do occasionally get some chest tightness, but not every time - I've told my doc about it. Always best to tell them I think anway.

I've never tried the injections, but have tried the sumatripan tablets and nasal spray and the rizatripan wafers - never had any palps with any of them, but whats good for might not be for you. First time I tried a triptan I made sure it was in the daytime with my husband in the house just in case I needed medical help with side effects and/or a ride to hospital! Might sound over-cautious but I've reacted badly to other meds in the past.

Sorry I cant help with neuro recommendations as Im in a totally different country - but sure hope you find a good one soon.

Have you asked your doc about oxygen? I still cant get that out of mine!


take care,

Fran

Welcome to the board. Can't help you with a neuro, west coaster here. You need to find either a knowledgeable neuro.....hard to find for our "unusual" condition....or an open minded doc that will read the research you bring them.

Educate yourself here on the board. Take that knowledge to your doc and learn how to work as a team to manage your treatment. Oxygen should be your first line abortive. A large percentage of sufferers can halt an attack in minutes using oxygen, but the medical community is still slow to embrace this safe treatment, preferring to load you up with highly addictive and useless narcotic pain meds! (end of Joes rant!)

Read the oxygen info link on the left. Bring the info to your doc, be ready to argue and don't take no for an answer! Glad you found us, hope we can help you.

Joe

Ah the Beast returns. What a sumbich he his to!! I have had heart palps for a few years, and don't notice any diff with the Sumitriptan injection at all. Bring it up with your doc though. I can tell you that in my 20's I was shall we say a little on the experimintave side? And enjoyed Psiliscybin mushrooms quite often and had hardly any episodes. Didnt really return till after things got cleaned up a bit. May want to check out clusterbusters. A whole lot of folks here are firm proponets of the O2 as well. Haven't tried that yet but will have the setup as I can get it, gonna be ready for the next Bout, and I don't want anymore pharma help with this bastid.
Jim

Headache. 2004 May;44 Suppl 1:S20-30.
Cardiovascular tolerability and safety of triptans: a review of clinical data.

Dodick DW, Martin VT, Smith T, Silberstein S.

Department of Neurology, Mayo Clinic Scottsdale, AZ 85359, USA.

Triptans are not widely used in clinical practice despite their well-established efficacy, endorsement by the US Headache Consortium, and the demonstrable need to employ effective intervention to reduce migraine-associated disability. Although the relatively restricted use of triptans may be attributed to several factors, research suggests that prescribers' concerns about cardiovascular safety prominently figure in limiting their use. This article reviews clinical data--including results of clinical trials, postmarketing studies and surveillance, and pharmacodynamic studies--relevant to assessing the cardiovascular safety profile of the triptans. These data demonstrate that triptans are generally well tolerated. Chest symptoms occurring during use of triptans are usually nonserious and usually not attributed to ischemia. Incidence of triptan-associated serious cardiovascular adverse events in both clinical trials and clinical practice appears to be extremely low. When they do occur, serious cardiovascular events have most often been reported in patients at significant cardiovascular risk or in those with overt cardiovascular disease. Adverse cardiovascular events also have occurred, however, in patients without evidence of cardiovascular disease. Several lines of evidence suggest that nonischemic mechanisms are responsible for sumatriptan-associated chest symptoms, although the mechanism of chest symptoms has not been determined to date. Importantly, most of the clinical trials and clinical practice data on triptans are derived from patients without known cardiovascular disease. THEREFORE, THE CONCLUSIONS OF THIS REVIEW CANNOT BE EXTENDED TO PATIENTS WITH CARDIOVASCULAR DISEASE. THE CARDIOVASCULAR SAFETY PROFILE OF TRIPTANS FAVORS THEIR USE IN THE ABSENCE OF CONTRAINDICATIONS.

Publication Types:
Review

PMID: 15149490 [PubMed]
============================

Search of PubMed in 3/09 found no abstract later than 2004 and none specific to Cluster Headache.
=============================================================

Neurology. 2004 Feb 24;62(4):563-8.
Triptans in migraine: the risks of stroke, cardiovascular disease, and death in practice.

Hall GC, Brown MM, Mo J, MacRae KD.

Institute of Neurology, University College London, UK. gillian_hall@gchall.demon.co.uk

BACKGROUND: Triptans are widely used to treat migraine but have been associated with stroke, myocardial infarction (MI), and ischemic heart disease (IHD) in case reports. OBJECTIVE: To estimate the incidence of stroke, cardiovascular events, and death in a migraine cohort, stratified by triptan prescription, and investigate whether the risk of these events was increased in those treated with triptans. METHODS: Migraine patients and matched nonmigraine control subjects were identified from the General Practice Research Database. Computerized records were searched for triptan prescriptions, stroke, TIA, MI, IHD, death, arrhythmia, and confounding variables. Incidence rates were calculated and migraine groups compared with controls using a Cox model, adjusting for confounders. RESULTS: Of 63,575 migraine patients, 13,664 were prescribed a triptan. There was no association between triptan prescription and stroke (hazard ratio [HR] 1.13; 95% CI 0.78, 1.65), MI (HR 0.93; 95% CI 0.60, 1.43), or other outcomes studied. The larger group of migraine patients not prescribed a triptan had an increased risk of stroke (HR 1.51; 95% CI 1.26, 1.82) and IHD (HR 1.35; 95% CI 1.18, 1.54) and a decreased risk of all-cause mortality (HR 0.72; 95% CI 0.65, 0.80). CONCLUSIONS: IN GENERAL PRACTICE, TRIPTAN TREATMENT IN MIGRAINE DOES NOT INCREASE THE RISK OF STROKE, MI, CARDIOVASCULAR DEATH, IHD, OR MORTALITY. TRIPTANS ARE PRESCRIBED TO THOSE LESS AT RISK OF THESE EVENTS.

Publication Types:
Research Support, Non-U.S. Gov't

PMID: 14981171 [PubMed ]

Rock,

There's a list of recommended docs on this board or the OUCH board somewhere -- someone can post a link to it (I'm not quite that computer literate).

Sorry you're getting hit - Oh heck it's JUST a headache - what's your bitch? ::) ::) ::)  Yeah we've all heard that one - just kidding you...

O2, Melatonin, Red Bull, Frozen Peas.....basic emergency kit for CH. And read, read, read..... There is a world of knowledge on this site. Ask questions - someone will be along to answer them... we're here to help you.

And remember ONE thing -- WE DO UNDERSTAND...

Hugs BD

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. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE  On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box.  Call 1-800-643-5552; 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.

Thanks so much to everyone for the help!  You guys are awesome!   8-)

I would have responded earlier but I have been in "Zombie" mode for the last week due to 30 min of sleep and an hour and a half clusters five times a night!  

I had not tried frozen peas  :)  Ahhh, natures goodness....

RockstarJJS wrote on Mar 27^th, 2009 at 11:53am:

Thanks so much to everyone for the help!  You guys are awesome!   8-) I would have responded earlier but I have been in "Zombie" mode for the last week due to 30 min of sleep and an hour and a half clusters five times a night!   I had not tried frozen peas  :)  Ahhh, natures goodness....

You haven't got o2 yet?

 Kinder gentler Potter

What meds are you currently taking for CH?

I invested in an ice/heat pack at CVS for 14 bucks. Works over and over.

How ya doing with getting a doc? And we'll start sounding like a broken record but really really push for oxygen. Coming up on 31 years with these damned things and it's still my first line and most consistently effective abortive. Do read the link on the left, "oxygen Info" as how you use it is critical to its success.

Joe

Thanks for all the replies!  

Things are going GREAT!  I found a doc up in Atlanta that is very familiar with clusters.  He put me on Prednizone (sp?), Verapamil, and Caphregot and got me some oxygen.  I must say that this is the most maneageable cycle I have ever had being on all of this.  Great tips on this forum regarding oxygen too!  The respritory therapist  told me to keep it between 8-10  ;D  We all know how well that works, so I am dialing it up a bit

Thanks for all the help and support!  You guys rock  8-)

RockstarJJS wrote on Apr 13^th, 2009 at 9:58am:

Thanks for all the replies!   Things are going GREAT!  I found a doc up in Atlanta that is very familiar with clusters.  He put me on Prednizone (sp?), Verapamil, and Caphregot and got me some oxygen.  I must say that this is the most maneageable cycle I have ever had being on all of this.  Great tips on this forum regarding oxygen too!  The respritory therapist  told me to keep it between 8-10  ;D  We all know how well that works, so I am dialing it up a bit Thanks for all the help and support!  You guys rock  8-)

Good on ya.  Keep on huffin.

     Potter

How does he have you use the cafergot? Is it in oral form? Curious because I use it and hardly ever see it prescribed.

I'm one who oxygen works almost every time, but the CH returns within 20 minutes of shutting off the 02. Now I pop an oral cafergot, and fire off the 02. The 02 beats it down, the cafergot buys me up to 12 hours pain free time. Hoping it keeps working as well for you!

Joe