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maryo
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desperate & need to vent
« on: Dec 29th, 2007, 3:06pm » |
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How unique -- desperate and need to vent. Probably applies to most of you reading this. But indulge me, OK?
I never really got officially diagnosed with CH. Over some 20 years I went to various docs, neuros, chiros, acus, homeopaths, and others. Everyone seemed puzzled by my history of symptoms. When I took the survey on this website, I fell right in the middle of the bell curve. My doc had told me I didn't have clusters because only 5% of sufferers are women. So next time I saw my doc, I stated that it was time to talk about my cluster headaches, pre-empting any question I had them. Actually it was a neuro who got me started on the right treatment path. But eventually my doc and I came to address the problem as partners, which made me feel (finally) comfortable. Unfortunately he retired this year.
I was episodic for about 25 years -- usually November to January. The last three years the headaches became more chronic and at the same time milder and slower to come on. Five minutes of oxygen and they were gone and I was asleep in another 2-3 minutes. I kept telling my husband (we've been married 5 years) that this was a picnic compared to episodes in the past.
You know that joke about hell -- the guy is led in by the devil to view his choice of three rooms. Cutting to the chase, he chooses the room with the most favorable conditions -- everyone is standing knee-deep in shit sipping coffee. But as soon as he joins them, the devil calls out, "Coffee break's over, back on your heads again."
This year I am having my worst episode ever -- 4 or 5 a night. The oxygen is less effective. When I turn it off the cluster returns. The doctor I saw this week called these "rebound headaches" (from O2??). This was not a comment that reassured me that we are on the same page. I know she's the medical expert, but she's not the expert when it comes to ch. Sometimes they forget that.
This forum is fantastic because I know very very few people who understand or try to understand what this syndrome is like. Even after you try to explain, they say things like "Do you suppose it's stress?" Would anyone say that to a friend with cancer? Or MS? No!! But when you have headaches, people seemed determined to help you understand that it's psychological.
This is problematic for me in the midst of my worst cycle ever. I feel more alone than ever, which compounds my hopelessness. My husband is extremely patient and accepting. However, today I am very very discouraged, and yet he announced he was going out to Home Depot, which is 45 minutes away. I've spent most of the day crying. I even confessed to having thoughts I haven't had for a long time, specifically, driving into a tree. So I was amazed he thought leaving me alone was ok.
I realize I sound pathetically whiney and on the pitty pot. But I so need to vent and be understood. It means a lot to me to have this website, and this forum.
So tonight I'm going to up the melatonin. They started me on 120 mg long-acting Verapamil, which has lowered my BP to 102/65 with a pulse of 52. So I cannot take much more, but I am to add 20 mg of short-acting Verapamil at bedtime. Obviously I have the O2 ready bedside w/ the nonrebreather mask. I do use Migranal as an abortive and have imitrex but with the palpitations they give me I'm reluctant to use imitrex.
Any suggestions or feedback would be appreciated!
Thanks for listening.
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Linda_Howell
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Re: desperate & need to vent
« Reply #1 on: Dec 29th, 2007, 3:14pm » |
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Welcome Maryo,
First of all you DO know that 02 does not cause rebounds right? Oh good, now that we got that out of the way. 02 is a life-saver for so many.
120mg. of the Verap is a bit low but if you can't take any more than that you can't.
Have you tried ice packs to the affected side, strong coffee or the high energy drinks like Rock Star, Red Bull and others. The caffeine as well as Taurine in them work very well in aborting a HA if it hasn't ramped up too high on the pain scale.
Please don't drive into a tree. The environmentalists will never forgive you.  Just come here and ask questions and vent to us. We all understand.
Linda
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Annette
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Re: desperate & need to vent
« Reply #2 on: Dec 29th, 2007, 3:26pm » |
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Hi Maryo
Sorry to hear you are doing it tough but have you discussed other preventives with your doc? Verapamil is not the only preventive. CH is a neurological condition and it involves nerves so often neuroleptic meds such as Lithium, Neurontin, Topamax ... can be helpful. Many chronics are on Lithium-Verap combo.
If you cant take triptans as arbortive due to heart palpitation then talk to your doc about Zyprexa. It works very well as an abortive for many of us without the cardiac side effects and its a lot cheaper than triptans. The only side major side effect of Zyprexa is weight gain and diabetic risk and so you need to discuss it with your doc.
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Brew
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Re: desperate & need to vent
« Reply #3 on: Dec 29th, 2007, 5:01pm » |
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One little warning: If you're taking verapamil, talk to your doc about taking taurine or any energy drinks containing taurine. I don't know the chemistry behind it, but it can cause heart problems.
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nani
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Re: desperate & need to vent
« Reply #4 on: Dec 29th, 2007, 8:53pm » |
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on Dec 29th, 2007, 3:06pm, maryo wrote:My husband is extremely patient and accepting. However, today I am very very discouraged, and yet he announced he was going out to Home Depot, which is 45 minutes away. I've spent most of the day crying. I even confessed to having thoughts I haven't had for a long time, specifically, driving into a tree. So I was amazed he thought leaving me alone was ok.
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Hi mary. I certainly understand feeling desperate and needing to vent. You've been given med advice, so I'll just concentrate on 2 things.
I often feel like driving into a tree. It's kind of a joke to myself when things get stressful (not just CH related).
I have also felt like I want to just die during a CH attack.
And finally, there have been times in my life when I've actually been suicidal due to clinical depression.
These are 3 different things. If you feel you might be depressed and actually suicidal...see a therapist and get on meds.
Your husband cannot babysit you 24/7, nor is he trained to deal with such a situation.
As far as his trip to Home Depot... maybe cut him a little slack. Imagine being home with him while he suffers, and gets discouraged, and is generally a bummer (not that you don't have a right to be, mind you)...and then you think "Hey, a shoe shopping trip would make me feel better!" Hopefully, he wouldn't begrudge you that.
Hang in there, come here to vent and be understood, and keep reading...
pf wishes, nani
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maryo
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Re: desperate & need to vent
« Reply #5 on: Dec 30th, 2007, 12:26am » |
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Thanks everyone!
Well the taurine is a concern when one is taking verapamil. I guess it warrants conversation with the doc. I am supposed to check in with her once a week by phone.
As far as my hubbie -- no he can't babysit me 24/7. However, on my worst day in years it was good he stuck around.
I think I have a lot of built up frustration from the years of non- or mis-diagnosis and misunderstanding from all but the coolest of close friends. Also, this escalation of clusters is the latest of several losses or disappointments I've experienced since June of this year. Plus sleep is a bigger issue than ever before. I was always able to fall back into a deep sleep for 3-4 hours after a bad cluster in the past, whereas now I have one or if I'm lucky, two hours between headaches and sometimes do not get back to sleep -- which is a blessing in one sense (no headaches generally when awake), but a curse in that sleep deprivation is accumulating.
Well I'm loaded up on meds & melatonin, and ready with O2, we'll see what happens tonight.
It's great to have informed, understanding, empathetic feedback.
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Linda_Howell
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Re: desperate & need to vent
« Reply #6 on: Dec 30th, 2007, 12:48am » |
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We all understand that frustration hon.
Hope you had/have a good nights sleep. Let us know in the morning how you are. O.K.? Please.???
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| « Last Edit: Dec 30th, 2007, 12:48am by Linda_Howell » |
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Bob_Johnson
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Re: desperate & need to vent
« Reply #7 on: Dec 30th, 2007, 9:10am » |
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The whole abstract worth reading--but one sentence re. oxygen and rebound. This has been reported in the med literature elsewhere, sometimes described as a headache which quickly returns after the oxygen is stopped. Sometimes explained as: Oxygen suppressing the attack and it redeveloping when Oxygen stopped.
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Neurol Sci. 2004 Oct;25 Suppl 3:S119-22.
Cluster headache: symptomatic treatment.
Torelli P, Manzoni GC.
Headache Centre, Section of Neurology, Department of Neuroscience, University of Parma, Via Gramsci 14, I-43100 Parma, Italy. paolatorelli@libero.it
The clinical management of cluster headache (CH) attacks requires a symptomatic treatment that is rapidly effective in resolving or significantly reducing symptoms. First-choice drugs for the symptomatic treatment of CH are subcutaneous sumatriptan at a dose of 6 mg and 100% oxygen inhalation at a rate of 7 l/min for no more than 15 min. Sumatriptan acts by suppressing pain and the accompanying autonomic phenomena, with no substantial differences in its mechanism of action between episodic and chronic CH. The drug can be used for prolonged periods without loss of efficacy or safety and its side-effects are generally mild or moderate. Oxygen inhalation has a number of advantages over drug therapy: it is free from side-effects, has no contraindications--unlike sumatriptan, it can be used in patients with cardiac, cerebral or peripheral vascular disease and with kidney, liver or lung disease--acts rapidly and can be administered several times a day. Its disadvantages are that it is scarcely practical and may induce a "rebound effect". Sumatriptan nasal spray, zolmitriptan and dihydroergotamine nasal spray are scarcely effective. After the introduction of sumatriptan, ergotamine tartrate has been relegated to a secondary role in the symptomatic treatment of CH. Among other non-drug and topical drug treatment options, hyperbaric oxygen therapy and the intranasal application of 10% cocaine hydrochloride and 10% lidocaine in the sphenopalatine fossa have also proved effective.
PMID: 15549518
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Dr. Robbins says that the sustained form of Verap is less effective than the immediate release form.
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Agree with a trial of Zyprexa but, the side effects noted, really pertain to patients who are using it dailyl. Since most CH need less frequent dosing I would not be put off giving it a trial.
Suggest considering lithium: has been effective in chronic CH.
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Bob_Johnson
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Re: desperate & need to vent
« Reply #8 on: Dec 30th, 2007, 9:42am » |
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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;44:1013-101 .
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Bob Johnson
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Bob_Johnson
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Re: desperate & need to vent
« Reply #9 on: Dec 30th, 2007, 9:45am » |
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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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maryo
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Re: desperate & need to vent
« Reply #10 on: Dec 30th, 2007, 9:50am » |
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Good morning,
I had a decent night. Have decided to sleep separately from my husband so he doesn't have to suffer along with me. Went to bed at 12:30 along with various pills plus a dose of benadryl, headaches at 6 and 7:30. O2 worked well on the 6 am headache but not well at 7:30 so popped a couple of cafergot. Was on the verge of needing to pace and wondered if people drag their O2 tanks around the house while pacing?
Had a question for Linda -- did you ever have trouble w/ docs beileving you have ch because you're female? I once was prescribed alprazolam (which is for anxiety) after going to the doc asking for a stronger pain reliever and explaining the headaches were so bad I was afraid to go to asleep. I work in the medical field (in an ER) and I am very familiar with the propensity of nurses and doctors to view a woman in pain as high strung and anxious.
Anyhow, I'll try the short-acting verapamil. Thanks for all the info and advice. We've had a lot of cloudy days here the last month. Today it's sunny and that should help! Also, thanks for caring.
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Brew
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Re: desperate & need to vent
« Reply #11 on: Dec 30th, 2007, 11:39am » |
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on Dec 30th, 2007, 9:50am, maryo wrote:| Was on the verge of needing to pace and wondered if people drag their O2 tanks around the house while pacing? |
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I don't. I have a 50-foot hose that works pretty well for the times I've needed to pace. Although I've become an edge-of-the-bed rocker, so it's kind of superfluous.
Get yourself a long hose if needed. I'm sure your med supply place would be happy to provide.
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Linda_Howell
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Re: desperate & need to vent
« Reply #12 on: Dec 30th, 2007, 12:06pm » |
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Quote:
Had a question for Linda -- did you ever have trouble w/ docs beileving you have ch because you're female? |
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NO. But I am sure I am the only woman here who hasn't. I was diagnosed by one of the best in the field of headaches. Dr. Lee Kudrow. Almost all the women here will tell you horror stories just like yours.
If you PM your address, I will be happy to send you a 50 ft. hose. Linda
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DennisM1045
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Re: desperate & need to vent
« Reply #13 on: Dec 30th, 2007, 12:14pm » |
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Hi Mary,
I'm glad you reached out and started this thread. I'm a pacer and a rocker. It all depends on what's working at the time. Like Brew I have a 50' hose that I trip over frequently.
Funny how things look better in the light of a new day huh. Keep fighting, asking questions and trying new ways to kick the beasts butt. That's why we're all here. Fast driving and trees are never the answer. Come vent here instead - every time.
-Dennis-
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BarbaraD
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Re: desperate & need to vent
« Reply #14 on: Dec 30th, 2007, 12:18pm » |
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Mary,
You said you have trex but then you said you popped a couple of cafergots... you do know NOT to take them together don't you??? This can be a lethal combination.... Be careful....
And no Linda, you're one of two. Nobody told me women didn't get CH until I came on ch.com - then I think BobP was the first to mention it.  I was just dumb until then and didn't know about that. I was diagnosed at Scott and White by some guys who didn't know any different and thought wimmens could have them...  Guess you and me are doing a pretty good job of trying to prove BobP wrong ain't we?  (Mary I'm kidding with Linda)
Hugs BD
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maryo
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Re: desperate & need to vent
« Reply #15 on: Dec 30th, 2007, 12:18pm » |
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I think tomorrow I need to call and get my verapamil changed to short-acting and get an EKG -- in other words, take the bull by the horns.
I'm getting O2 delivered this week and I'll have them bring 50' of hose. Good idea. Thanks for your offer Linda. You have been so helpful.
It's also on my list to find a doc who will study up on this stuff before presuming to know what to do
Going out for a walk with my faithful dog now . . .
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maryo
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Re: desperate & need to vent
« Reply #16 on: Dec 30th, 2007, 12:25pm » |
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Yeah I know not to mix cafergot w/ trex. Because good to be reminded.
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Annette
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Re: desperate & need to vent
« Reply #17 on: Dec 30th, 2007, 7:14pm » |
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Just one more thing Maryo, dont let the dog anywhere near your 50' hose, either your dog will get tangled in it or it will have an unsurpassable urge to sink its teeth into the hose and the next time you pace around puffing on your O2 the bag wont inflate properly !
Painfree wishes to you and good luck with it all.
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