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New cycle need to vent to someone who understands (Read 1122 times)
mainer
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New cycle need to vent to someone who understands
Apr 1st, 2010 at 8:35am
 
My husband has had clusters for about 17 years now. He is a little over a week into his spring cycle. The last 3 nights have been tough. Yesterday started with the first imitrex injection at around 9am. The second was at 7:30 pm. Another 1/2 around 11pm then 1/2 at 1:30 am this morning. O2 3 times during the night aborted more till 6am. Then another injection. So many shots this close together scares me.

80mg Verapamil daily out of cycle works. He  started 160mg week ago and jumped up to 400mg 3 days ago. I hope it kicks in soon. Have order in for non re-breather mask. Maybe that will abort more hits.

He is afraid to sleep... I am afraid to sleep... I hear him moaning and wake him for O2.

Sorry if this is long winded but others dont understand! You try to explain to them and they tell you, "Oh I get migraines and just cant function." I dont feel my husbands pain when the Bug as he calls it in chewing behind his eye. I do understand what he is going through. I have cried with him when he is at a 10+, held his head when he is at a 10+ so that he wont hit himself, taken him to the ER at midnight for head stitches when I was not fast enough to stop the iron flashlight to the skull, run for cool cloths..new O3 tanks, and hidden the guns.

I guess I feel better for venting. Thanks to all of you who are here. I have been coming to read for more years than I want to. To the guy that posted something about people hear being unfriendly.. you are wrong!

One last thing. My first visit here had an account of a man who went to the cellar so his family would not hear to use his choice of weapons, a telephone. That described my husband to a T. Is there a chat room here anywhere. I have looked and can not find one.

Thanks for listening!!!! Tonya
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Iddy
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Re: New cycle need to vent to someone who understands
Reply #1 - Apr 1st, 2010 at 8:48am
 
Hi Tonya...sorry to hear that the Beast has returned for your husband

Sounds like your doing all the right things. One other option is the energy drinks. The Red Bulls, RockStar's etc.
Slamming one down on the first indication of an onset can be very effective.

You sound like a wonderful supporter, thank you.

All the best and I hope the Beast will leave your husband soon. Smiley

Iddy
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neuropath
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Re: New cycle need to vent to someone who understands
Reply #2 - Apr 1st, 2010 at 9:17am
 
Many here use Melatonin to make nights more manageable. Maybe an option for your husband. Often dosages of 9-10mg are recommended here, but I would start lower and gradually increase in small steps, as required.

Your husband sure is lucky to have you, Tonya!
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Guiseppi
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Re: New cycle need to vent to someone who understands
Reply #3 - Apr 1st, 2010 at 9:26am
 
Welcome to the board, God we love our supporters. Don't know where I'd be without mine. Check with his doc about a short prednisone taper, going from say 80 mg a day to zero over a 10 day period. I get 100% relief while on prednisone, gives my prevent, lithium, a chance to get a toehold and start fighting the beast off. A nasty long term med due to all its side effects but great for a short term prevent.

If you haven't already, read the oxygen info link on the left side of the board. Small adjustments in how you use it can dramatically increase the effectiveness and speed of the abort. Critical points being non re breather mask, high flow rate of at LEAST 15 LPM and get on it at the first sign of a twinge.

Wishing him a short ride.

Joe
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mainer
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Re: New cycle need to vent to someone who understands
Reply #4 - Apr 1st, 2010 at 9:42am
 
Thanks for the ideas. I will for sure check on the melatonin. We do have an emergency stash of prednisone that doc prescribed about 5 years ago. Unfortunately he was also hit with Pustular Psoriasis on hands and feet. We are struggling to get that in control. Prednisone will help the clusters but make the psoriasis worse. On bad days he walks on tip toes. Why is it that you have to trade one evil for another?
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Bob Johnson
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Re: New cycle need to vent to someone who understands
Reply #5 - Apr 1st, 2010 at 11:46am
 
When you get the "I have migraine" routine try responding with comments some women cluster folks have said: the pain is worse than that of child birth!" Perhaps that will convey cluster pain more clearly.

You didn't mention your medical support: working with a headache specialist?

Many folks use up to 900mg Verapamil:
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Headache. 2004 Nov;44(10):1013-8.   

Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.

    Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).

=======================================
SLOW-RELEASE VERAPAMIL

Dr. Sheftell applauded the protocol for verapamil used by Dr. Goadsby and colleagues, which entailed use of short-acting verapamil in increments of 80 mg. “This method was suggested by Lee Kudrow, MD, 20 years ago as an alternative to slow-release verapamil,” Dr. Sheftell noted.

“I would agree with using short-acting verapamil, rather than the sustained-release formulation, in cluster headache,” he said. “I prefer the short-acting formulation with regard to ability to titrate more accurately and safely. My clinical experience anecdotally demonstrates improved responses when patients are switched from sustained-release verapamil to short-acting verapamil.”

Dr. Goadsby agreed that his clinical experience was similar. “There are no well-controlled, placebo-controlled, dose-ranging studies to direct treatment. This is one of those areas where clinicians who treat cluster headache have to combine what modicum of evidence is available with their own clinical experience,” Dr. Sheftell commented.
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Might be interesting to try an alternative to Imitrex and see if it works. YOur doc can give a sample and within 1-3 uses you will know whether it helps.

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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And see the PDF file below.
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Re: New cycle need to vent to someone who understands
Reply #6 - Apr 1st, 2010 at 10:23pm
 
Tanya,

Thanks for being there for him!  You don't know how important that is!  To many here have had their spouse get up and leave them because of the inconvenience of dealing with CH.  I guess "For better or worse..." didn't mean anything to them.  Those of you who stick with us make all the difference in the world.  My wife knows when to leave me alone, but is there for me when it is all over to just hold me while I'm trying to put myself back together.  Just knowing she is there provides SO much comfort and stability.

I would second what Joe said about the oxygen.  I used to think it didn't work for me.  I had been using 15lpm through a regular nonrebreather mask.  It helped, but wouldn't kill the beast and got to be more truoble than it was worth.  Last summer I was convinced to try it again at 25lpm and with the new O2ptimask (available in the ch.com store).  I can now kill an upper Kip level hit within 5-8 mins.  I wouldn't be without it!

Bob, as always, also gave you some excellent info.  Please follow up on it.

In the meantime, give your husband a big hug from all of us and tell him we've got your back.

Jerry
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Re: New cycle need to vent to someone who understands
Reply #7 - Apr 1st, 2010 at 10:44pm
 
Tonya, welcome to CH.com. No need to apologize for the long post, that's why we're here. I'm in cycle too. With the O2pti mask (available here) and high flow (25lpm+) O2, I'm controlling my hits well.

Not sure if the O2pti mask is what you ordered but if not I highly recommend it. Some things that help with aborting with O2 are to hyperventilate the O2, breathing deply and exhaling completly. Another trick I use is take as deep a breath of O2 as I can, hold it a few seconds then exhale as much as possible and then some. Repeat as needed.

That 5 yr old Prednisone may have lost some potency and I don't think it's a good idea without the Dr. Can't say I haven't though.

With a good O2 setup the Imitrex can be kept to a minimum. I stop over 95% of my hits with the O2pti mask and a regulator capable of 25lpm and higher. 15lpm is considered the minimum needed, if less works we can turn it down.

Most Dr's and O2 suppliers are only aware of 15lpm, so most times we have to buy our own regulator.

We can help you find what you need.

Best of Luck,  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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mainer
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Re: New cycle need to vent to someone who understands
Reply #8 - Apr 2nd, 2010 at 8:56am
 
Hi Everyone, I cant thank you all enough!!! I gave my husband a printed copy of all your replies. He was reanding and grabbed a tissue. Your thoughtfullness brought him to tears. That is not an easy thing to do. We are not used to people being so kind to us. We are more the givers and usualy get crapped on in the long run.

Anyway.. Melatonin will not be an option as it will react negatively with his enbrel (autoimmune supressor). I will order the O2 PTI mask even though oru O2 supplier is getting something. Will also check into meds that Bob suggested. We have the BEST Neurologist!!! Karl Sanzenbacker out of EMMC in Bangor Maine if anyone near needs one.

Again THANKS SO MUCH!!! It means more than anyone could know to have you all here!     Tonya
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Guiseppi
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Re: New cycle need to vent to someone who understands
Reply #9 - Apr 2nd, 2010 at 9:14am
 
Your hubby's a lucky man Tonya, good supporters rock! Wink

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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