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3 weeks into a cycle (Read 3818 times)
PGHgirl
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3 weeks into a cycle
Apr 16th, 2010 at 11:31am
 
Hello,

I get Clusters every two years for about 5 weeks at a time 2-4 times a day for the past 16 years. I am now 3 weeks in this cycle and I have gotten only 2 a day I have have been using my trex 4mg injections for about 1 week everyday I am going to the Doc today to try and get O2. My question is can you develop an immunity to trex? For me it still works but I am worried that it will stop working if I keep taking it everyday till the end of my cycle which I pray is very soon.
Also I have not looked into other options since my last episode 2 years ago any ideas?
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« Last Edit: Apr 16th, 2010 at 11:37am by PGHgirl »  
 
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Pfunk
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Re: 3 weeks into a cycle
Reply #1 - Apr 16th, 2010 at 11:46am
 
I have been using the 6mg injections as long as I can remember and they have always worked for me. From time to time one would not work. But I could go back to it on the next hit and it would work again. The O2 is a very good idea as too much trex may tend to give some people "rebound" headaches. Good luk and PF wishes to you.

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Re: 3 weeks into a cycle
Reply #2 - Apr 16th, 2010 at 7:28pm
 
mine are allot like yours , every couple years  for several weeks , I have learned from this site that its a good idea to try and take a prevenative also , then your trex or o2 to abort or stop one thats comming , I tried to do it without this cycle and payed for it , many take verapamil , I am now , and if I have to steroids.
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Re: 3 weeks into a cycle
Reply #3 - Apr 16th, 2010 at 11:11pm
 
This is only my second cycle, so I'm not an expert by any means.  But the 02 in the last cycle (at 15lpm's) only reduced my headaches ... it never really got rid of them ... and then I would get hit again.  This cycle, I have the 25 lpm O2 (which works like a charrm .... love it love it love it), but I still keep my Trex just in case. I also this cycle started taking Flova (and a few other meds, which are the same ... just different manufacturors) which seems to be keeping the headaches away. I did that when I was in high cycle and getting hit about 8 times per day.  The o2 at high flow rates (some people can get results with lower flow rates, but that didn't work for me ... everyone is different though) is definitley a winner in my book ......... cheap, fast, and no drugs ... what more could you ask for ?
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PGHgirl
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Re: 3 weeks into a cycle
Reply #4 - Apr 18th, 2010 at 6:27pm
 
I went to my Dr. and was told to keep taking the trex and that o2 was a bad idea. The Dr. I had 2 years ago was great then we moved so I had to find a new Dr. and he has little knowledge of clusters. Not good!

Smiley

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« Last Edit: Apr 18th, 2010 at 6:29pm by PGHgirl »  
 
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Mike Bernardo
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Re: 3 weeks into a cycle
Reply #5 - Apr 18th, 2010 at 6:57pm
 
I don't know the answer, as I am a new slave to the Beast, and am 4 months into this crazy trip. I hope you feel better soon. Just an FYI, I use Sumavel and it works on my HA. So far, 2 shots. first one lasted almost a week, second one was today, so the jury is still out.
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Re: 3 weeks into a cycle
Reply #6 - Apr 18th, 2010 at 7:36pm
 
PGHgirl,

Punch the Beast multiple ways, with more than one weapon. 

Abortive:  O2 first, trex when caught without O2
Transitive:  steroid, e.g. prednisone (caveat emptor)
Preventive: verapamil, lithium

Sounds like you're relying on the Trex alone, and there may be better ways to consider.  O2 works for me (with pred some times), until verapamil kicks in to prevent.  IMHO daily O2-ing beats daily Trex-ing.

Fox
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Mike Bernardo
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Re: 3 weeks into a cycle
Reply #7 - Apr 18th, 2010 at 8:04pm
 
Clarification: I always say Sumavel, which is "Trex" that everyone else refers to. Just a different name brand (Sumatriptan). It is a beautiful thing, even if it is $80 a pop.
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Re: 3 weeks into a cycle
Reply #8 - Apr 18th, 2010 at 10:38pm
 
Read thru the link below from the Michigan Headache & Neurological Institute. Current O2 flow rates are a minimum of 15lpm.

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If your Dr won't listen about O2, you should find one who will. Overuse of Imitrex can kill, O2 will not.

Don

Please see Bob Johnson's post about triptans for more accurate info.
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« Last Edit: Apr 19th, 2010 at 1:45pm by Skyhawk5 »  

Though I walk through the valley of the shadow of the Beast , I  have O2 so I fear him not.
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neuropath
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Re: 3 weeks into a cycle
Reply #9 - Apr 18th, 2010 at 11:17pm
 
Get yourself O2 and a new doctor. A doctor who thinks that O2 is a bad idea and that imitrex only instead of preventatives is a better idea is not someone I would want looking after me.

Imitrex should not be the anchor of your treatment, but a second line abortive when you have no access to O2.
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Bob Johnson
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Re: 3 weeks into a cycle
Reply #10 - Apr 19th, 2010 at 10:39am
 
Neurology. 2006 Oct 10;67(7):1128-34. [Publisher's note: information  correct as of 1/27/09.]
Risk of ischemic complications related to the intensity of triptan and ergotamine use.

Wammes-van der Heijden EA, Rahimtoola H, Leufkens HG, Tijssen CC, Egberts AC.

Division of Pharmacoepidemiology and Pharmacotherapy, Utrecht Institute for Pharmaceutical Sciences, Faculty of Science, Utrecht University, The Netherlands.

OBJECTIVE: To investigate whether the intensity of triptan and ergotamine use, in specific overuse, is associated with the risk of ischemic complications. METHODS: We conducted a retrospective nested case-control study using data from the PHARMO Record Linkage System. All patients with more than one prescription for either a triptan or ergotamine were initially identified. Cases were all patients who were admitted to the hospital for an ischemic complication. Matched controls were assigned the same index date as the cases. The determinant was the intensity of use of triptans and ergotamine during 1 year preceding the index date. OVERUSE WAS DEFINED AS USE OF > OR =90 DEFINED DAILY DOSES DURING THAT YEAR. Conditional logistic regression was used to estimate odds ratios (ORs), adjusting for confounders. Stratified analysis was used to estimate the risk for both patients using and those not using cardiovascular drugs. RESULTS: A total of 17,439 patients received more than one prescription. A total of 188 cases and 689 controls were identified. Triptan overuse was not associated with an increased risk of ischemic complications (OR 0.96; 95% CI: 0.49 to 1.90). Overuse of triptans in patients concomitantly using cardiovascular drugs did not increase this risk. Overuse of ergotamine turned out to be a risk factor for ischemic complications (OR 2.55; 95% CI: 1.22 to 5.36). Patients overusing ergotamine and concomitantly using cardiovascular drugs were at highest risk (OR 8.52; 95% CI 2.57 to 28.2).

CONCLUSIONS: IN GENERAL PRACTICE, TRIPTAN OVERUSE DOES NOT INCREASE THE RISK OF ISCHEMIC COMPLICATIONS. OVERUSE OF ERGOTAMINE MAY INCREASE THE RISK OF THESE COMPLICATIONS, ESPECIALLY IN THOSE SIMULTANEOUSLY USING CARDIOVASCULAR DRUGS.

PMID: 17030745 [PubMed ]
============

Headache. 2004 May;44(5):414-25.Related Articles, Links
Consensus statement: cardiovascular safety profile of triptans (5-HT agonists) in the acute treatment of migraine.

Dodick D, Lipton RB, Martin V, Papademetriou V, Rosamond W, MaassenVanDenBrink A, Loutfi H, Welch KM, Goadsby PJ, Hahn S, Hutchinson S, Matchar D, Silberstein S, Smith TR, Purdy RA, Saiers J; Triptan Cardiovascular Safety Expert Panel.

Department of Neurology, Mayo Clinic Scottsdale, AZ 85259, USA.

BACKGROUND: Health care providers frequently cite concerns about cardiovascular safety of the triptans as a barrier to their use. In 2002, the American Headache Society convened the Triptan Cardiovascular Safety Expert Panel to evaluate the evidence on triptan-associated cardiovascular risk and to formulate consensus recommendations for making informed decisions for their use in patients with migraine. OBJECTIVE: To summarize the evidence reviewed by the Triptan Cardiovascular Safety Expert Panel and their recommendations for the use of triptans in clinical practice. PARTICIPANTS: The Triptan Cardiovascular Safety Expert Panel was composed of a multidisciplinary group of experts in neurology, primary care, cardiology, pharmacology, women's health, and epidemiology. EVIDENCE AND CONSENSUS PROCESS: An exhaustive search of the relevant published literature was reviewed by each panel member in preparation for an open roundtable meeting. Pertinent issues (eg, cardiovascular pharmacology of triptans, epidemiology of cardiovascular disease, cardiovascular risk assessment, migraine) were presented as a prelude to group discussion and formulation of consensus conclusions and recommendations. Follow-up meetings were held by telephone. CONCLUSIONS: (1) Most of the data on triptans are derived from patients without known coronary artery disease. (2) Chest symptoms occurring during use of triptans are generally nonserious and are not explained by ischemia. (3) The incidence of serious cardiovascular events with triptans in both clinical trials and clinical practice appears to be extremely low. (4) The cardiovascular risk-benefit profile of triptans favors their use in the absence of contraindications.

Publication Types:
Consensus Development Conference
Research Support, Non-U.S. Gov't
Review

PMID: 15147249 [PubMed - indexed for MEDLINE]

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Skyhawk5
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Re: 3 weeks into a cycle
Reply #11 - Apr 19th, 2010 at 1:44pm
 
Thanks Bob, I obviously needed to read that. Going to correct my statement.

Don
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Though I walk through the valley of the shadow of the Beast , I  have O2 so I fear him not.
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PGHgirl
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Re: 3 weeks into a cycle
Reply #12 - Apr 19th, 2010 at 1:52pm
 
I had the worst HA of my life 10++ this morning so exhausted! I am working on finding another Dr. to give me o2 and tonight I am trying Melatonin any idea on how much I should take?? 


Also thank you for all the advice soon as I get a new Dr. then I will be able to try new ideas.



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Bob Johnson
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Re: 3 weeks into a cycle
Reply #13 - Apr 19th, 2010 at 4:00pm
 
If you are having a run of 10+, really suggest you use a heavy duty abortive--Imitrex or Olanzapine.

I doubt that Melatonin, etc. will help with such intensity.
=======
Headache 2001 Sep;41(8):813-6 

Olanzapine as an Abortive Agent for Cluster Headache.

Rozen TD.

Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and TWO PATIENTS BECAME HEADACHE-FREE AFTER TAKING THE DRUG. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE.

PMID 11576207 PubMed

--------------------------------------------------------------------------------


Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
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Bob Johnson
 
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PGHgirl
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Re: 3 weeks into a cycle
Reply #14 - Apr 19th, 2010 at 4:19pm
 
Hi Bob

I took the trex with the HA this morning it took about 20 mins
and I did get relief. I was just thinking of taking the Melatonin to help with my sleep pattern. Not sure if it will do that or not?

I have been taking the trex 1 a day for about 10 days and I have 6 more days and I run out of my stockpile then I will have nothing to take. I can not afford more trex and I have no health care coverage I have the trex from when I had Ins. I stocked up.  Also this is why I have such a bad Dr. no health Ins = poor Dr. and poor care.




Praying for PF days!!
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« Last Edit: Apr 19th, 2010 at 4:22pm by PGHgirl »  
 
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Re: 3 weeks into a cycle
Reply #15 - Apr 19th, 2010 at 5:45pm
 
I wish there was a way we could have donations on this site and someone could moniter the money to make sure its paid directly to the o2 place or to the pharmacy for verap , etc , I know I would give , yes I could't afford more then 10 a month , but no one should have to go without here that needs help with these damb headaches , no one, It just ticks me off to no end .
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Re: 3 weeks into a cycle
Reply #16 - Apr 19th, 2010 at 7:12pm
 
Hi PGH Girl,

The reports I've seen here from fans of melatonin have them taking around 9 mg before bed, and sleeping thru the night with no attacks.

Didn't work for me, but IMO it could be worth a try for you. I'll probably even try it again in the future for the heck of it.

Have you become aware of the ClusterBuster approach to fighting CH yet, as outlined in this Newsweek article?

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« Last Edit: Apr 19th, 2010 at 7:24pm 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.
bejeeber bejeeber Enter your address line 1 here  
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Re: 3 weeks into a cycle
Reply #17 - Apr 20th, 2010 at 7:16am
 
Hi!
I am brand new to this board.  I have suffered from CH for years now.  Like others, they come and then go for a year and then come back-at around the time the seasons change- going into Spring.
I have something to contribute.  I read once about the guy that did exercise and it stopped his headaches.  The last time I was in a CH period, I started doing the deep knee bends, and it really worked.  I even ran up and down the stairs.  I am now getting up (when I feel it coming on and it wakes me up) and am doing jumping jacks in my living room.  It really has been helping.  It seems to abate the pain before it gets to the crescendo.  I don't know why (unless I have missed it) more people are not talking about the beneficial affects of getting the blood flowing as it seems the jumping jacks are doing for me.
I still have an appt. to see the headache dr., cause the last time she gave me steroids and something else (don't recall since last visit was two years ago) but it did work form me. 
So, the combo of the drugs and the exercise seems good.
I started getting a headache in a diner yesterday and went intot the bathroom- did the jumping jacks and then sat down, and the pain abated.
I hope this helps others who are also suffering.
Robert
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Re: 3 weeks into a cycle
Reply #18 - Apr 20th, 2010 at 4:57pm
 
I am willing to try the jumping jacks if I can muster up the  strength next time I feel a CH coming on.

Still trying to get a Dr. to give me the o2   
Sigh Smiley

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« Last Edit: Apr 20th, 2010 at 5:00pm by PGHgirl »  
 
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Re: 3 weeks into a cycle
Reply #19 - Apr 21st, 2010 at 10:19am
 
Hi,
It really is important to try the physical exercise once you feel the slightest inkling that the headache is coming on.  I know it's tough to imagine getting out of the bed to then start to do jumping jacks, but we all know that we'd rather be out of the bed doing that then being out of the bed with our head in our hands with the pain.

I keep doing this and it has been working-and I'm a definite CH sufferer.  So please, please, please- try this and see if it works for you.  I amreally surprised that no one else (at least I don't seem to find it) has discussed this possible help,here on this message board.
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Re: 3 weeks into a cycle
Reply #20 - Apr 21st, 2010 at 11:11am
 
PGHgirl wrote on Apr 20th, 2010 at 4:57pm:
I am willing to try the jumping jacks if I can muster up the  strength next time I feel a CH coming on.

Still trying to get a Dr. to give me the o2   
Sigh Smiley


    Buy your own o2, no muss no fuss no script needed.

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Re: 3 weeks into a cycle
Reply #21 - Apr 21st, 2010 at 11:46am
 
Robert61 wrote on Apr 21st, 2010 at 10:19am:
  I amreally surprised that no one else (at least I don't seem to find it) has discussed this possible help,here on this message board.


I have read a lot of people saying excercise helps them.  Excercise triggers it for me at times.  Some people like the hot shower, some like the cold.  Try stuff and see what works.

--Shaggy
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Re: 3 weeks into a cycle
Reply #22 - Apr 21st, 2010 at 9:49pm
 
Below is a link with a tip on how to split your Imitrex.
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Don
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Though I walk through the valley of the shadow of the Beast , I  have O2 so I fear him not.
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Re: 3 weeks into a cycle
Reply #23 - Apr 21st, 2010 at 10:08pm
 
Robert61 wrote on Apr 21st, 2010 at 10:19am:
  I amreally surprised that no one else (at least I don't seem to find it) has discussed this possible help,here on this message board.


The search function isn't always that great here I'm afraid, but we have discussed it many times, including fairly recently, and extremely vigorous exercise 'til you drop is a CH aborting method that I can say has worked for me on occasion.

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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.
bejeeber bejeeber Enter your address line 1 here  
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Re: 3 weeks into a cycle
Reply #24 - Apr 22nd, 2010 at 7:23am
 
I use exercise alot to deter the constant/daily shadows.  More often than not it works.  Have been known to avoid a hit this way too.  And it keeps my son happy ... nothing like running around the oval kicking the footy  Smiley
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