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Topic: Sufferer and Survivor for 32 Years (Read 1005 times) |
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KatzPurr
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Sufferer and Survivor for 32 Years
« on: Mar 6th, 2008, 9:46pm » |
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I guess I will start with a brief background and go from there. In April I will be celebrating my 20th wedding anniversary to a wonderful man who has been supportive and always helpful in my battle with cluster headaches. I also have a 13 year old son and my 65 year old mother who lives with us both providing never-ending understanding and concern. It is difficult for them because they hate to see me in such great pain knowing there isn’t much they can do, but I appreciate just having them around to provide loving support.
My story begins at age 12 when I experienced my first cluster headache in 6th grade. It was an experience that I will never forget. It only lasted 5 or 10 minutes, but the pain was unlike any I had ever had before. It felt like someone was literally driving a railroad spike through my left temple and when the pain finally subsided, I hoped it would never return. Unfortunately that was not the case and I’m now 44, so I’ve been a sufferer and survivor for 32 years. I also get migraines and tension headaches, but any of you who get those too know that there is no comparison to the horrible beast that is personified in a cluster headache.
My ch have been mainly episodic. Up until about 10 years ago, I pretty much suffered from these bouts like clockwork every year. Most often they occurred at the same time and with similar patterns as they had previously. Then the ch would go into complete remission until the next bout hit. Usually I would start getting the ch about a week apart until they would bunch together into two or three a day and then finally ending in up to 6 or more a day before disappearing completely. As they increased in frequency the intensity also grew from maybe 3 or 4 up to 10+ ch by the end. You all know that’s when there are not enough medications on this earth to stop the pain. And speaking of meds… well since I have been dealing with these evil monsters for so long you can bet that I’ve tried just about every drug known to mankind. I have also tried everything from herbal remedies to acupuncture and even O2, which was successful once in the ER many years ago, but never worked again. I have gone to doctors, neurologists, had cat scans… the whole nine yards, but to no avail. The only medication that I have found to work with any reasonable effect is Imitrex. The injections are the quickest and best method, but unfortunately Imitrex in any form has a horrible rebound effect. Also the maximum dosage is supposed to be only twice a day, which poses a problem when having more than two ch.
When I was around 32 the attacks started spreading out to 2 years and then 3 years. My last series of attacks was about 3 years ago and until they started up again in December. This time the pattern has been a little different. I had several ch, but then they went away until January. I had several more that month and then they disappeared once again until February. And now I have had them steadily ever since the middle of February, with the ch increasing in numbers and intensity. Wednesday I had the worst ch of this bout and even 100 mg of Imitrex didn’t abort it completely. After 90 min. of 10+ the pain reduced to about a 4, so I could finally drive myself home where I then added an Oxycodone to the mix, which finally seemed to alleviate my pain. In any case, I’m now getting the ch about twice a day and hoping they will go into remission soon. My strategy the past couple of bouts has been to simply manage the pain until the ch leave. Most often by the time I can get in to see a neurologist anyway, the ch are gone. For me there is only a brief window of about 2 to 3 months to experiment with new remedies etc., and so while I’m certainly open to new ideas and/or suggestions, I don’t like to waste huge amounts of energy running around to specialists who want to use me as their guinea pig.
So that’s my deal. Feel free to provide any insight you have to offer as it will be greatly appreciated. I am thankful to be a part of a support group where we can help one another, even if nothing more than to know there are others who suffer and who are willing to listen.
Thanks for your time,
KatzPurr 
P.S. Thanks for your response Superdave. I suspect the O2 setup I had was not sufficient. It was only a nose breather, not a mask like what I had when I was in the ER. I had a heck of a time even getting a doc to get the script set up for me. I suppose giving it another try with proper output might be worthwhile.
P.S.S. I also realized when reading the information someone posted about making Imitrex injections last longer, that I can actually take 4 halves of my 100 mg tablets... duh! I have no idea why that never occurred to me before. Usually a half will do the job unless the ch is very severe, so I can cover 4 attacks in one day which rocks!
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| « Last Edit: Mar 6th, 2008, 10:45pm by KatzPurr » |
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Superdave
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Re: Sufferer and Survivor for 32 Years
« Reply #1 on: Mar 6th, 2008, 10:13pm » |
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Hello KatzPurr,
Welcome, glad to have you here, Sounds like you could teach us a thing or to.
Tell us about your o2 rig that didn't really work for you,
Was it a non rebreather mask and did you have a large volume of oxygen flow? at least 15 lpm there is a pretty high success rate for o2 but the set up really needs to be correct for the application
Superdave
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Wow! you mean it's just in my head?
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George_J
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Re: Sufferer and Survivor for 32 Years
« Reply #2 on: Mar 7th, 2008, 1:07am » |
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Welcome, Katzpurr. I'm a long-timer myself, and an episodic as you are.
For the best description (with photos) of a proper oxygen setup for CH that I've seen here, go to the Cluster Headache Specific Board, look for the post pinned to the top: "Helpful Hints--Must Read", go to the second page, and scroll down to Batch's post. Should give you a good idea what you ought to be looking at if you're inclined to try oxygen again--and I definitely encourage it.
Used properly, oxygen has been shown to be an effective abortive treatment for about 70 percent of us.
All the best, and again--welcome.
George
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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Bob_Johnson
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Re: Sufferer and Survivor for 32 Years
« Reply #3 on: Mar 7th, 2008, 8:50am » |
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Three medical reports which may give some comfort.
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Headache. 2004 Feb;44(2):178-82.
Frequent triptan use: observations on safety issues.
Robbins L.
Department of Neurology, Rush Medical College, Chicago, Ill. 60062, USA.
OBJECTIVE: To examine the safety of frequent triptan use over extended periods. For a small group of patients with refractory migraine plus chronic daily headache, triptans are effective. METHODS: This retrospective study primarily evaluated the cardiac safety of daily triptan use in 118 patients and, in addition, hematologic tests were assessed. Each patient had utilized a triptan for a minimum of 4 days per week for at least 6 months. Patients with rebound headache had been withdrawn from the triptans. Most patients (97 of 11 averaged 1 tablet daily; most would occasionally go for several days without a triptan. Forty patients had taken a triptan for 6 months to 2 years, 37 patients from 2 to 4 years, and 41 for 4 or more years. RESULTS: Routine hematologic tests were performed periodically on all patients, and no abnormalities were attributable to triptans. Almost all patients had an electrocardiogram, and no abnormal electrocardiograms were felt to be related to triptans. Cardiac echocardiography was performed in 57 patients. The 10 abnormal echocardiograms were not due to triptans. All 20 cardiac stress tests revealed normal findings. Adverse events were minimal; 9 patients described fatigue due to triptans, and 5 had mild chest tightness. CONCLUSION: This long-term study of 118 patients indicates that frequent triptan use may be relatively safe.
PMID: 14756859 [PubMed - indexed for MEDLINE]
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Headache. 2005 Sep;45(:1069-72.
Treatment of Cluster Headache Attacks With Less Than 6 mg Subcutaneous Sumatriptan.
Gregor N, Schlesiger C, Akova-Ozturk E, Kraemer C, Husstedt IW, Evers S.
Background.-Subcutaneous (SQ) sumatriptan 6 mg is effective in the treatment of acute cluster headache attacks. However, patients sometimes benefit from a dose less than 6 mg. Objective.-Therefore, we designed a prospective open study to evaluate how many patients benefit from a dose less than 6 mg SQ sumatriptan. Methods.-We enrolled 81 consecutive patients with cluster headache and recorded their use of SQ sumatriptan and oxygen. Patients regularly using SQ sumatriptan 6 mg were advised to treat attacks with doses less than 6 mg and with oxygen. Efficacy and side effects of the different treatment options (6 mg, 3 mg, 2 mg, and oxygen) were evaluated. Results.-As a result, 74% of the patients using SQ sumatriptan 3 mg showed efficacy and 89% reported efficacy after 2 mg. Seventy-nine percent reported side effects after the use of SQ sumatriptan 6 mg (29% severe side effects). After the use of 2 mg SQ sumatriptan, only 50% of the patients reported side effects, none of these were classified as severe. Patients' preference was 41% for 6 mg sumatriptan, 28% for doses less than 6 mg, and 31% for oxygen. Conclusions.-We conclude that sumatriptan in doses less than 6 mg can be effective in the acute treatment of cluster headache attacks. We suggest that patients should have experience in their individual efficacy of sumatriptan doses less than 6 mg. (Headache 2005;45:1069-1072).
PMID: 16109122
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Funct Neurol. 2000 Jul-Sep;15(3):167-70. Related Articles, Links
Sumatriptan overuse in episodic cluster headache: lack of adverse events, rebound syndromes, drug dependence and tachyphylaxis.
Centonze V, Bassi A, Causarano V, Dalfino L, Cassiano MA, Centonze A, Fabbri L, Albano O.
Dept of Internal Medicine and Public Medicine, University of Bari, Italy.
This observational study was designed to examine the pattern of sumatriptan use in patients with cluster headache using more than the recommended daily dose of subcutaneously injected (s.c.) sumatriptan. Thirteen patients suffering from episodic cluster headache were asked to record the characteristics of their attacks and drug intake for 1 year. All reported a high daily frequency of attacks (more than 3 per day) and the related overuse of s.c. sumatriptan. The results show that the overall incidence of adverse events among patients receiving sumatriptan injections for the treatment of cluster headache is low. The extended administration of this drug in episodic cluster headache did not result in tolerance problems or tachyphylaxis. Only 4 patients experienced minor adverse events and recovered more slowly than the others. They suffered from migraine without aura and cluster headache, and showed a family history of migraine. Even though they must be viewed with caution, due to the observational nature of the study and the low number of patients included, these results suggest that the profile of sumatriptan may differ in cluster headache compared with migraine.
PMID: 11062845
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| « Last Edit: Mar 7th, 2008, 8:56am by Bob_Johnson » |
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Guiseppi
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Re: Sufferer and Survivor for 32 Years
« Reply #4 on: Mar 7th, 2008, 10:16am » |
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The advice you've already been given is a lot to digest so I won't pile any more on ....yet....except to push the 02!!
The nasal canulas are worthless for delivering 02. CH requires your lungs get 100% 02 and nothing else, that's the only way you'll get the therapeudic effect we need. I've been dancing for almost 30 years and it is still my number one abortive. I can be pain free in 6-8 minutes using the oxygen, please consider re visiting it.
Other then that, get your supporters to log on and hang out with the other supporters. My wife's been with me 28 years, she's the one that fond this board for me and saved my sanity! They'll find some understanding souls they can bitch to when you're really struggling with the beast.
I'm so glad you found us, you're not alone anymore! 
Guiseppi
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KatzPurr
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Re: Sufferer and Survivor for 32 Years
« Reply #5 on: Mar 9th, 2008, 3:58pm » |
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 Thank you everyone for your replies and helpful advice. The ch are coming too frequently now and I'm using up my Imitrex way too fast, so I'm headed to the Doc tomorrow hopefully. We'll see what we can come up with and perhaps I will re-visit the whole O2 option.
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| « Last Edit: Mar 9th, 2008, 4:00pm by KatzPurr » |
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Superdave
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Re: Sufferer and Survivor for 32 Years
« Reply #6 on: Mar 9th, 2008, 4:28pm » |
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Hi again KatzPurr,
Sorry to hear your suffering so much (I feel your pain)
You might try chuggin some red bull or any energy drinks containing tuaren and caffine, It doe's wonders for many of us, it may help get you through the night.
Big hugs  wishing you a pain free night
Superdave
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Wow! you mean it's just in my head?
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BarbaraD
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Re: Sufferer and Survivor for 32 Years
« Reply #7 on: Mar 11th, 2008, 9:07am » |
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You might talk to your neuro about switching from Imitrex to Cafergot (ergotomine) for an abort. I did this years ago and have found the ergotomine (an old drug) to be a lot more effective (for me). It comes in tablets and supportories (if by chance you get the supp. make SURE you get the Cafergot PB ones or you'll be throwing up your insides). It seems to last longer with a lot less side effects.
Red Bull at the first sign of CH will sometimes abort a hit. It's worth a try.
O2 is a given around here. Most of us swear by it. It's safe, cheap and works for most of us.
Melatonin at night (6-15mg) for those night hits. Helps you get the rest you need at night. Works for a lot of us.
Remember, not everything works for all. It's still trial and error, but read read read. Something here WILL work for you.
Hugs BD
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