New CH.com Forum | |
http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl
Cluster Headache Help and Support >> Getting to Know Ya >> New Member - Torry http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1309342665 Message started by Torry on Jun 29th, 2011 at 6:17am |
Title: New Member - Torry Post by Torry on Jun 29th, 2011 at 6:17am
I don't normally do forums so I'm slightly confused as to how they work. Bear with me =P
My name is Torry, I'm a 21 year old female episodic sufferer living in CT. I first started getting my headaches about 4 years ago, my freshman year of college. I thought it was odd that they always happened two hours I woke up and even though they hurt, they didn't hurt enough for me to think to call a doctor. They lasted for about two weeks then go away for a few months, but I never noticed the trend until about a year of having them. Fast forward to roughly a year ago and the present. These headaches became more intense with each cycle. They've gotten so bad that I'm completely debilitated when I have them and the cycles are getting closer and closer together. Not only that but I've started getting more than one a day. I still have the one two hours after I wake up (it doesn't matter what time it is that I wake up) but I also get them in the afternoon and night time. Before I knew what these headaches were, I thought I was seriously ill. I thought I had a brain tumor or was having an aneurism or something. One night it hurt so bad, I almost called an ambulance and almost smashed my head against a wall just so I could pass out. I called my parents though and they said I was over reacting so I didn't call an ambulance. I did, however, schedule a doctor's appointment to have an MRI done. With a clean MRI, my doctor simply diagnosed me with migraines. I was prescribed some migraine medication (the name is escaping me) and it didn't work. All hope was lost. Then one day, I was watching a documentary on an unrelated subject but it temporarily mentioned cluster headaches. I was amazed as every symptom they mentioned matched my symptoms perfectly. I thought I was saved!....until I found out there's no cure. I made a doctor's appointment with a neurologist and I was lucky because he agreed with me that they were cluster headaches. A lot of people tend to have trouble getting an accurate diagnosis but my neurologist said my case is almost text book. These are my symptoms: -Horner's Syndrome -Restlessness (pacing, rocking back and forth) -Severe pain behind left eye (left side every time) -Headache normally lasts about half an hour I was prescribed with the imitrex shot, verapamil, and magnesium. I have yet to try the blood pressure medication and magnesium as I work 7 days a week and am scared to have my BP drop while at work (I'm gonna have to man up though huh?). I have tried the injection once and while it helped within 5 min, I got a rebound headache later; it's like that original headache came back with a vengeance. I plan on trying to blood pressure medication today, as I'm in a cycle and it's unbearable. I know the BP meds and magnesium are preventative so won't help automatically but the cycle is motivation enough to start. I'm sorry for the lengthy message and if there's anything I should have mentioned, let me know. It's wonderful to find a support group as everyone I know thinks I'm over reacting because "a headache can't be that bad". Makes me want to cry every time someone doesn't believe me how much it hurts. -Torry |
Title: Re: New Member - Torry Post by Andy T on Jun 29th, 2011 at 7:16am
Hi Torry
Sorry to hear your suffering, but welcome to the club. I have to say its essential you get onto the prevent meds. It may well be a week or two before it really helps, but its better late than never. Clearly the injections are doing a job, but you'll be limited to what you can take. You might do well to ask your doc / neuro about the possibility of getting onto O2. It seems to work for the vast majority of people on the board. I only came on line recently and following the O2 advice from these guys has made a massive difference to me. Take a look at the yellow link to the left of your screen, its well worthwhile reading. Also look at the Imitrex tips, its possible to stretch out and make the most of your limited dosage. Well I hope your episode is soon over and you get PF All the best Andrew |
Title: Re: New Member - Torry Post by Mike NZ on Jun 29th, 2011 at 7:17am
Hi Torry
We know exactly what it's like to have a CH, either as we get them ourselves or we support people who get them. So there is no way we'd ever say anything like "it's just a headache". Do try the verapamil, this for many (including myself) works great, although it takes about a week or so to build up to an effective dose. Most people get relief between 360mg and 480mg a day, although some go to around 1000mg. Whilst it's building up, many will use a taper dose of prednisione, starting at around 60mg a day and decreasing down to zero over about 10 days. This will give you some relief whilst the verapamil builds up. You didn't mention using oxygen. This is an amazing way to abort CHs. I average 6 minutes to abort mine, going from agony to being pain free. Read up about it with the link on the left. Make sure you get a non-rebreather mask and a high flow rate (the higher the better). Keep reading and asking questions, you've got the collective experience of people with many decades of CH experience between us. |
Title: Re: New Member - Torry Post by wimsey1 on Jun 29th, 2011 at 8:01am
Hi, Torry, and ditto the above. I understand your reluctance to join forums. I belong to a total of two...and this site is very compelling in its depth of knowledge and support. No, there is no cure...but there is help as you've heard above. Is your doc a headache specialist who cares about CHs? I ask this because so many are not, and the fact you were not prescribed O2 right off tells me he may not be up on the most current methods of treatment.
I also want to encourage you to read the threads on Batch's diet (123 days pain free and I think I know why) as well as the various threads on melatonin. OTC help is found here. Let us know how you progress in battling this most unrighteous beast. Blessings. lance |
Title: Re: New Member - Torry Post by Bob Johnson on Jun 29th, 2011 at 10:08am
Please! A remarkable % of people never fill Rx given by their doc or use the med. Both patient and doc have failed expectations.
Verap does not have a powerful effect on BP and its use by Cluster folks does not often produce a problematic drop in pressure. Worse outcome: you stop using it. But it is the leading med used to prevent/reduce Cluster attacks and you need something more than Imitrex to gain control. And since it takes a number of days to become effective, and dose adjustments may be needed, sooner you start the better. Following outlines its use. This is a widely used approach for Verap and you might print it to share with your doc. -- 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. |
Title: Re: New Member - Torry Post by Torry on Jun 29th, 2011 at 3:38pm
Thanks for the responding so quickly! I'm just going to answer people's questions in one fell swoop =P
I don't think my doctor is a headache specialist, I've looked around and there are none in my area that I can find. However, he does seem to be relatively knowledgable. He's from Russia and apparently they've had more studies on CH's there than they do here. He initially wanted to prescribe me with Lithium but I have Anxiety Disorder so he wanted to hold off on the Lithium. About the oxygen. I think he wanted to try this route first because, let's face it, I'm young. I'm only 21 years old, in school, living on my own, working two jobs just to get by...chances are I can't afford the oxygen lol. However if it comes to it, I'm hoping my insurance will cover it. I know most don't but I have pretty good medical insurance. Does anyone know if Cigna covers O2 tanks? Haven't read the links yet but I will today, as am I starting the meds =P I'd read them now but I've got e shadow and I know it's coming...wish me luck =/ |
Title: Re: New Member - Torry Post by Torry on Jun 29th, 2011 at 3:40pm
Thanks for the responding so quickly! I'm just going to answer people's questions in one fell swoop =P
I don't think my doctor is a headache specialist, I've looked around and there are none in my area that I can find. However, he does seem to be relatively knowledgable. He's from Russia and apparently they've had more studies on CH's there than they do here. He initially wanted to prescribe me with Lithium but I have Anxiety Disorder so he wanted to hold off on the Lithium. About the oxygen. I think he wanted to try this route first because, let's face it, I'm young. I'm only 21 years old, in school, living on my own, working two jobs just to get by...chances are I can't afford the oxygen lol. However if it comes to it, I'm hoping my insurance will cover it. I know most don't but I have pretty good medical insurance. Does anyone know if Cigna covers O2 tanks? Haven't read the links yet but I will today, as am I starting the meds =P I'd read them now but I've got e shadow and I know it's coming...wish me luck =/ |
Title: Re: New Member - Torry Post by RichardN on Jul 16th, 2011 at 8:03am
Hi and Welcome Home
Verapamil and 02 worked for me (came here 02' . . a basket-case after 13 months mis-diagnosis, non-working meds), and even if you have to pay cash, 02 is CHEAP, but order your regulator off of ebay if insurance won't cover . . . about $30 for a 15 lpm regulator . . . same regulator from a med supply could be five times the price. Then get an Op2mask (links on this site) $27.50. Re your friends not understanding your "headaches" . . . go to the top of this board in the "locked topics" section and copy the "Letter to Employers and Colleagues" . . . it will give them some new insight into what you're going through. Keep reading, keep asking . . . you've found the motherlode of ch info/caring/sharing. We DO understand your pain. Be Safe, PFDANs Richard |
New CH.com Forum » Powered by YaBB 2.4! YaBB © 2000-2009. All Rights Reserved. |