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boomer14
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Newbie doctor
« on: Jan 10th, 2007, 5:03pm » |
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Hello all, I am a Newbie to the board other than responding to sstrutt a couple weeks ago. I am 37 and began having CH's at age 18, but was only accurately diagnosed at age 25 during my 2nd semester of med school. I am episodic with typical "spells" lasting around 3 months. Fortunately oxygen is an effective abortive for me unless I have consumed alcohol and then it doesn't really work well(a Non alcoholic beer with less than 0.5% alcohol induced a bad one 3 weeks ago). Before being accurately diagnosed I would typically have 2 or 3 kip 6 to 9 CH's lasting 30 to 60 minutes a day. Alcohol without fail always brings one on for me when in cycle though I can drink any amount without a CH when out of cycle. My time between cycles is typically 9 to 15 months.
When diagnosed accurately in 1995, I was placed on a burst and taper of prednisone as well as Verapamil and was CH free for about a year(thank god as I was heading towards flunking out)
Since then, I taper off Verapamil when my cycle ends and start back on Verapamil when I get the feeling in my head that I am starting a new cycle(kip 2or 3 usually to start with a kip 6 to 9 if I have alcohol). The Verapamil prevents my CH's for the most part, but when I don't get enough sleep, I tend to get 2 or 3 that respond to oxygen for which I feel very lucky. I remember quite well suffering before being accurately diagnosed and still have the occasions when O2 has not been available.
I am currently in cycle and this one has been particularly frustrating in that it has been going on now for 6 mos. I fear that I may have prolonged this one by doing a 2nd b&t of prednisone 3 mos into it. I was desperate as when on prednisone I am Ch free and I had a week in court in a child custody case where I couldn't afford to get CH's.
Since reading the board for the last month and reading ideas of others, I have increased my verapamil to 480 mg(from 360mg)and have titrated up to 9mg of melatonin at night and started on a Cal Mag supplement as well as starting kudzu planetary full spectrum 2 pills twice daily. My normal days are much better now with some days being CH free. However as an ER doc, I work many night shifts and tend to get 2or 3 a night on those nights and the next day when trying to nap I am awakened usually 30 to 60 min into the nap with a CH. In short, I am getting exhausted and the more exhausted I get, the more CH's I get. Again, thank god that o2 works for me as I could not work without it, but I sure am desperately waiting for this cycle to hopefully end. Having to duck into my office to use o2 rather than see patients has its drawbacks as well.
Has anyone else noticed a prolongation of their cycle with prednisone? Any other thoughts or suggestions are appreciated. I really would like to avoid going on an anticonvulsant(as you can probably tell by all the things I have tried in the last month). Thanks Boomer14
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AussieBrian
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Got beer?
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Re: Newbie doctor
« Reply #1 on: Jan 10th, 2007, 5:36pm » |
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Welcome aboard, Boomer,, and sorry you need to be here but you're not self-medicating are you? Can't reccommend highly enough that you get yourself under the care of a good neurologist.
All the best,
B.
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Margi
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Re: Newbie doctor
« Reply #2 on: Jan 10th, 2007, 6:03pm » |
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please be careful combining the verapamil AND the kudzu!! Both lower blood pressure and we've had a sufferer here have some awful results from doing that!
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boomer14
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Re: Newbie doctor
« Reply #3 on: Jan 10th, 2007, 8:41pm » |
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thanks for the concern. I have previously somewhat self medicated though have seen a neuro as well. Currently my fam doc prescribes my meds. I really have had no side effects to the meds other than constipation from the verapamil. I am able to check my bp frequently at work and it has always been normal. I have an appt to see a neuro in 2 weeks who I have not seen before as my previous neurologist left the state.
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Jonny
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Re: Newbie doctor
« Reply #4 on: Jan 10th, 2007, 8:56pm » |
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Lets start with something simple.....are you a guy or a chick?
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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AussieBrian
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Re: Newbie doctor
« Reply #5 on: Jan 10th, 2007, 8:59pm » |
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on Jan 10th, 2007, 8:56pm, Jonny wrote:Lets start with something simple.....are you a guy or a chick?
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Sex, sex, sex, it's all he ever thinks about! Got any beer you can't drink?
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Vulcrania horrendus - twice daily, then two at night in lieu of sleep.
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boomer14
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Re: Newbie doctor
« Reply #6 on: Jan 10th, 2007, 8:59pm » |
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A simple guy
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nani
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Re: Newbie doctor
« Reply #7 on: Jan 10th, 2007, 11:55pm » |
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Hi boomer. Welcome. The most success is seen with kudzu when you plan your doses around your CH activity. If you are normally pf during the day, you may want to split your doses so that they fall about 2 hours before your most active times (or biggest hits). So, if you can plan a nap, take the kudzu 2 hours before you lie down.
Perhaps drinking a RedBull during those night shifts could help, too?
Here's an FAQ about kudzu, not very professional, I know. It's based on info gathered by kudzu testers.
http://www.kudzubusters.com/KudzuFAQs.doc
Good luck and keep us posted.
pain free wishes, nani
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froggy
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Re: Newbie doctor
« Reply #8 on: Jan 11th, 2007, 12:12am » |
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Just in time Nani, I was just going to ask you how the kudzu is going. I remember when you were just starting on it. I'm glad to hear it's going well for you. Thanks for the link. That's the very next thing to try.
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froggy
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Mattrf
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Re: Newbie doctor
« Reply #9 on: Jan 11th, 2007, 1:39pm » |
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Hay Boomer, welcome to the board, sorry you have CH and had to find us but it’s always nice to get a new member especially one who is a doctor and can give some really good impute to discussions.
Sure hope you get some relief soon and find what works best for you.
Keep us up to date with how it goes.
Matt
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There is no stronger a person then one who can deal with brain pain and still function.
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Salvelinus
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Re: Newbie doctor
« Reply #10 on: Jan 11th, 2007, 7:01pm » |
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on Jan 10th, 2007, 5:03pm, boomer14 wrote:| Having to duck into my office to use o2 rather than see patients has its drawbacks as well. |
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I hear ya. I am an inpatient PT, and I can't just drop my patient when I feel a hit coming on. That's why preventatives are so important for me.
on Jan 10th, 2007, 5:03pm, boomer14 wrote:| Has anyone else noticed a prolongation of their cycle with prednisone? Any other thoughts or suggestions are appreciated. I really would like to avoid going on an anticonvulsant(as you can probably tell by all the things I have tried in the last month). Thanks Boomer14 |
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Prednisone has been so much more effective for me than medrol packs. But I can keep a medrol pack on hand for when I need it quickly. As for my other meds, I'll share them with you:
Riboflavin (Vit. B2) 200 mg bid
Magnesium 250 mg bid
verapamil er 240 bid
Those are my current prevents. I'll say that for me, the B2 and magnesium have been excellent, and worked so well for the current cycle that I avoided the steroids while the verap. is building up.
What ended my last cycle is indocin. There are some here who had no luck with it, but for me it killed the cycle when nothing else did, and I had the longest remission of my life. I wish I could remember the dosage, but I'm sure you could figure that one out.
Boomer, I feel for you. You have other responsibilities that override taking care of yourself, but if you don't take care of yourself you cannot take care of anyone else. It's an extremely frustrating position to be in. I hope and pray that you will find relief soon. Stay strong.
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Namaste,
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Again."
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boomer14
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Re: Newbie doctor
« Reply #11 on: Jan 15th, 2007, 2:51pm » |
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Thanks all for your concern and suggestions. I am going to stop the kudzu I believe as I really haven't noticed a difference with it. I plan to add the riboflavin to my regimen of:
Verapamil ER 240 BID
Melatonin 9mg at HS
cal/mag 3x day
My symptoms are manageable other than when my circadian rhythmn gets altered by my evernights at work. Then those nights and the next day are at times pretty bad, but nothing compared to my days without oxygen.
I am going to be in Florida on vacation in early Mar and was wondering what others have done in regards to oxygen(i will be flying there). Hoping this darn cycle will be over by then. Not being able to enjoy a few coronas on the beach would be frustrating.
Also, My partner was detailed on a new sleep med rozerem that acts on Melatonin receptor sites. Melatonin has for the most part helped me avoid overnight hits and I hesitate to try it instead. Anyone tried it?
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TonyG1
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on Jan 10th, 2007, 5:03pm, boomer14 wrote:| Has anyone else noticed a prolongation of their cycle with prednisone? |
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Hi Boomer - So sorry you have CH and are in pain  --- glad you found the site !!  I was looking at the original post - my personal experience is that prednisone hasn't extended any cycles for me -- verap seems to extend my cycle -- whereas if I were med free it might run 4 to 6 weeks -- last time the cycle ran about 12 weeks; however, the verap certainly decreased both the intensity and frequency of the attacks! Somewhat of a trade-off -- a shorter cycle with much more intense and frequent attacks OR longer cycle with less frequent and intense attacks -- I will always opt for option #2 !! 
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TonyG1
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on Jan 15th, 2007, 2:51pm, boomer14 wrote:| Also, My partner was detailed on a new sleep med rozerem that acts on Melatonin receptor sites. Melatonin has for the most part helped me avoid overnight hits and I hesitate to try it instead. Anyone tried it? |
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FYI Boomer -- Just did a quick drug interaction check:
Verapamil can cause increases in the amount of Ramelteon in the blood. Taking these drugs together can increase the risk of serious side effects
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pubgirl
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Re: Newbie doctor
« Reply #14 on: Jan 15th, 2007, 7:00pm » |
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Hello Boomer
r.e 02 . Unless you aren't in the UK-was thrown by your Union Jack flag and reference to your neuro "leaving the State" check with whoever is the Home Oxygen supplier for your area as they can supply a list of countries they have an arrangement with.
Many European countries are covered by the contracts but the USA may not be.
Some airlines will also let you carry 02 with written permission, but the portable tanks don't last long.
Also you can be referred to the London Institute of Neurology and see Prof Goadsby himself if you wish to. Your GP just has to refer you. The waiting list for an NHS appointment is about 3 months though I think.
Also have you joined OUCH UK yet? You might find it useful and you would be welcomed, doctor or not (we have quite a few doctors who are members)
Wendy
P.S. Hate to suggest advice to a doctor but if your cycle really is unmanageable, wouldn't upping your Verap dosage (with ECG of course) be a better idea than repeating the steroid bursts? I am sure you know that the steroid treatment is an exceptional one, not for regular use and your Verap dose is really pretty low for a CH sufferer.
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Calling all Brits (and anyone else- all welcome) Join OUCH UK and help us fight CH together
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burnt-toast
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Re: Newbie doctor
« Reply #15 on: Jan 17th, 2007, 10:53am » |
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Boomer,
I usually start off by saying work closely with your doc. on all medication issues but…
My treatment is for a chronic condition with reasonable predictability of activity fluctuation within a chronic cycle. (3 to 5 month low activity periods averaging 3-4 attacks per week followed by 7 to 9 month high activity periods averaging over 4 attacks daily).
In my case, I’ve have had little success with traditional abortive therapy (Oxygen, Imitrex, Zomig, Caffergot). Drinking very hot tea and applying ice packs directly (no towel between skin and ice pack) to my eye, forehead and temple provide relief consistent with Oxygen/drug therapies but the advantage seems to be that using ice may reduce the number/severity of attacks (more monitoring is needed to confirm this). Drinking very hot liquids and adding ice packs to your current regiment of successful abortive therapies may provide some additional benefit without risking side effects.
Following two contiguous years of severe activity, treatment/control of my CH was initiated by increasing doses of Lithium Carbonate until measurable improvement was experienced at 1200mg. Leveling off at this dosage provided reasonable control for about 24 months before uncontrollable activity resurfaced. After experimenting with several compatible drugs, adding increased doses of Verapamil provided measurable relief at 720mg. Increasing to 960mg improved CH symptoms even more but caused painful leg swelling. Dosages were leveled off at 720mg and this combination has provided reasonable control for over a decade. However, I want to point out that if I vary from my med. schedule by over an hour or forget a dose – I’m in trouble and it sometimes takes days to regain control over attacks. Sticking with a tight regiment is important.
At 6'6"/230# I tolerate 720mg Verapamil/1200mg. Lithium Carbonate well and they have been life savers but if I could tolerate more Verapamil I would take it. At these levels monitoring liver/heart function several time a year should be mandatory to catch potential problems early. I guess what I am saying is that there is a need to find the balance between relief and tolerable dosage levels and experimenting with preventative treatments using combination drug therapy can be effective.
Prednisone was added to my options three years ago to abate increasing CH activity - not as a preventative. My use consists of 520mg. tapers spread over 2 or 3-week periods at the first signs of increased CH activity. Prednisone is relatively new for me - used 1 or 2 times per year. Results have been mixed providing control roughly half the time and being ineffective the other half. It appears that the earlier Prednisone is used when symptoms begin to increase the more effective. I haven’t had enough time to confirm anything but now keep a prescription on standby so that I can test the theory. Prednisone hasn’t lengthened the high periods of my cycles but it has clearly shifted them. With each use, peak activity has steadily shifted from early fall through early spring to early spring through mid fall/early winter. Other than an indication that Prednisone can affect CH activity, I’m not sure what you can take from this.
I hope this helps in some way.
Best Wishes,
Tom
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