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warning to all on preventatives and abortives (Read 7691 times)
boski
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Re: warning to all on preventatives and abortives
Reply #25 - Jul 14th, 2010 at 8:38am
 
I'm on Topomax and it's ok. Takes awhile to build up so don't
expect it to work over night so to speak.  May take weeks to
get on a level strong enough to help.  Good Luck!

Can always stop them if you don't like them.
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Pinkfloyd
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Re: warning to all on preventatives and abortives
Reply #26 - Jul 15th, 2010 at 12:46am
 
I think the key point in all of this is to get educated on whatever treatment you are using so you can make decisions based upon what is best for you and also to know what is happening if you start getting side effects.

I just read where someone had been on 85mg of prednisone for 5 months straight. I would not want to experience the detox from that.

I also spoke to someone that had been addicted to oxy (all prescribed) from long standing migraine treatment. During her detox from the oxy, she was prescribed 7 different meds to treat the migraines as a replacement for the oxy.
Not only do the migraines continue, but she couldn't figure out why she still had slurred speech and bad memory loss. one of the drugs she was prescribed....400mg of Topimax.

Her doctor had told her ZERO on possible side effects on any of the 7 drugs se had been prescribed. (at least she didn't remember ever being told any side effects)

So...everyone tries to do the best they can....including the docs.
The responsibility is on the patient to know what they are putting into their bodies and how it is effecting them. With the Internet, it's not that difficult.
Most people are are multiple meds to treat their clusters. Even the PDR the doctor might read on the meds you are on, the PDR does not say how YOU will react to a 5 or 7 medication cocktail.

People will read the side of a Wheaties box but not what's in one of those little pills. We've all been brought up to trust our doctors. The FDA wouldn't approve it if it wasn't safe and my doctor certainly wouldn't prescribe it if it wasn't safe.

Be careful
Be smart
Be your own best advocate

Bob
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Mike NZ
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Re: warning to all on preventatives and abortives
Reply #27 - Jul 15th, 2010 at 1:20am
 
When I saw my neurologist, as she was writing the proscription, she said to always read up on whatever drugs any doctor proscribed. After all it's your body that you're putting the drugs into and it is you who will be impacted by any side effects, etc.

And if you get side effects, knowing what the potential side effects are will help you identify them early and make the appropriate changes in consultation with your doctor.

As with anything, knowledge is power.
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MJ
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Re: warning to all on preventatives and abortives
Reply #28 - Jul 15th, 2010 at 1:43am
 
Pinkfloyd wrote on Jul 15th, 2010 at 12:46am:
I think the key point in all of this is to get educated on whatever treatment you are using so you can make decisions based upon what is best for you and also to know what is happening if you start getting side effects.


So...everyone tries to do the best they can....including the docs.
The responsibility is on the patient to know what they are putting into their bodies and how it is effecting them. With the Internet, it's not that difficult.
Most people are are multiple meds to treat their clusters. Even the PDR the doctor might read on the meds you are on, the PDR does not say how YOU will react to a 5 or 7 medication cocktail.

People will read the side of a Wheaties box but not what's in one of those little pills. We've all been brought up to trust our doctors. The FDA wouldn't approve it if it wasn't safe and my doctor certainly wouldn't prescribe it if it wasn't safe.

Be careful
Be smart
Be your own best advocate

Bob


Well said Bob It's worth repeating.
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Dying in Omaha with CH
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Re: warning to all on preventatives and abortives
Reply #29 - Jul 18th, 2010 at 11:37pm
 
We have tried some of these meds and other treatments as well, here is our experience with them:

Verapamil - low heart rate also, also becomes dependent on the drug, and do believe it turned from episodic to chronic. No real relief noticed either, considered unsuccessful.

lithium - feeling of loopyness, mood swings (after all, it is used to treat bipolar cases too). No real relief noticed either, considered unsuccessful.

Sumitriptan Injections (6mg) (Nerve tranquilizer) - only 2 a day, causes rebounds prolongs cycles and increases intensity over time.  Nerve tranquilizer therefore wipes you out for the rest of the day.  Sometimes followed by nausea.  Did get relief quite quickly from this one, at least temporary relief until the next day.
There is a new needleless form of this injection that uses a CO2 cartridge to basically force the liquid through the skin and it disperses into the blood stream.  These are EXTREMELY painful (I prefer a needle), the first one I took caught me off guard and went off with pretty good force, causing it to push away from my skin and none of the medicine went in.  Also had the glass part at the tip bust and stick into my skin in one case.

Predisone (pill-form steriods basically)- works great at the beginning, especially when started with a "booster" steroid shot from physician, but will find one's self needing more and more and longer usage to keep of CH, also causes irreversible side effects such as vision impairment when used for long periods of time, causes acne, hair growth in "new" places where hair wasn't present before, causes extremely high levels of testosterone release, followed by very low, causing both mental, emotional and sexual side effects.

Medrol Dose Pack (also a steroid) - Same side effects for the most part as prednisone.  Also taken with an injection of a more powerful and short term steroid administered by a physician.  Used to get steriods into system faster for quicker relief giving the pill form of the steroids time to take effect.

High-flow Oxygen - Occational relief if started use at first sign of headache, didn't work if started at moderate or peak times of pain.  Needed to carry oxygen tank EVERYWHERE we went just in case a headache came on, not only a pain in the you-know-what to transport constantly, but also quite embarrassing for a 33 year-old smoker if seen in public.

Migranol Nasal Spray - First of all, VERY expensive, effective most of the time for relief at time of onset, but no long-term relief.  Causes some nasal side effects such as dry nasal cavity, runny nose and nausea/drowsiness.  Can also cause the "drips" in the back of your throat inducing the gag reflex and causing vomitting.

Chiropractic treatment - currently undergoing treatment 3 times per week doing adjustments in neck and spine, also a physical therapy type program that stretches muscles in neck.  Haven't noticed any improvement with the CHs, but not a bad idea to get everything aligned properly either.  Have experienced some cases where it seemed that the appointment would cause the onset of a CH immediately following the session.

Next treatment that is being considered: acupuncture.  Far-fetched, I know, but we are desperate and exploring all avenues right now.  Have read posts that claim it works wonders.  If no relief from the acupuncture, it may be time for the last resort, deep brain stimulation surgery.  But hoping to find a cheaper, less invasive treatment before that is done.
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boski
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Re: warning to all on preventatives and abortives
Reply #30 - Jul 19th, 2010 at 1:14am
 
Hey Dying

How much Verap? Don't feel dependent, will need to come off
slowly if that's what you mean but it seams to help with
verap and topomax. 


Imitrex comes in vials and you can stretch it out, I get 6-8
doses from 2 vials.  Don't feel nearly as wiped as if I would
trying to deal with a few hrs of pain.  Cheesy
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Re: warning to all on preventatives and abortives
Reply #31 - Jul 19th, 2010 at 10:00am
 
omaha...sorry I missed you. I was just there Saturday visiting my daughter. With due respect, I suggest that you commit to a lifestyle change and develop a plan for attacking CH. The pain is severe enough for most of us to be inconvenienced whether it be quit smoking of lugging around an O2 tank. O2 will abort a HA 90% of the time, but you have to be committed to it and follow procedures decribed herein carefully. Complain all you want that nothing works, but things do work and there is no need for a CH sufferer to suffer! Read about O2 here and then visit clusterbusters.com for alternative treatments. Then do what you want, but to others out there reading...THERE ARE SOLUTIONS THAT WILL ELIMINATE YOUR PAIN...
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alleyoop
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Re: warning to all on preventatives and abortives
Reply #32 - Jul 19th, 2010 at 10:03am
 
Dying in Omaha said:
"Next treatment that is being considered: acupuncture.  Far-fetched, I know, but we are desperate and exploring all avenues right now.  Have read posts that claim it works wonders.  If no relief from the acupuncture, it may be time for the last resort, deep brain stimulation surgery.  But hoping to find a cheaper, less invasive treatment before that is done."



Have you considered busting your CH?

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Re: warning to all on preventatives and abortives
Reply #33 - Jul 19th, 2010 at 10:11am
 
Jim, if you are willing to try something else. Visit chusterbusters.com. Alternatives discussedthat have had great postitive results.
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Lizzie2
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Re: warning to all on preventatives and abortives
Reply #34 - Jul 19th, 2010 at 10:35am
 
This thread was heartbreaking for me to read, and I hope very much that AO will come back and maybe reconsider leaving the boards. 

The fact is that side effects can and do happen.  Not every person will experience every side effect and there is sadly no way to predict who will receive each one.  You can read all the labels and product information you want, but it still leaves you with the ultimate very difficult decision of weighing risks and benefits without fully understanding which side effects are the worst to worry over and which ones could be more likely than others.  Also, the desire for pain relief from CH is going to outweigh for many the remote possibility of getting some rare side effect.  For me, having AVN from years of steroid use, I've agonized over this at length.  Had someone actually told me that steroids could potentially cause AVN but the risk was small, I'm not sure it would have stopped me.

I think where this needs to come in is in physician guidance regarding side effects.  People should be told about AVN as a potential problem from steroids, but then told what to look for and what the patient and doctor can do together to make sure they head this off or at least catch it extremely early if it does happen.  And stepping away from the specificity of that example, for all medications - it is important for patients to be advised by their doctors for what things to look for, and then their doctors to be receptive to the patient calling in about negative effects.  Proper monitoring of side effects is a big deal.  Not doing so is poor.  And then not acknowledging the suffering that your patient has gone through (even if you don't take on personal responsibility for something that comes as a result of a medication side effect, but still at least say "I'm very sorry that happened to you - here is what we are going to do now")...  It all makes a difference and I think people who have good relationships with their physicians can get through even experiencing some catastrophic side effects.

I wouldn't ever recommend to anyone to bow off of all prescribed treatments, but it is an individual decision and one that should be in open conjunction with a good doctor that you feel you can trust.  What I took away from this was that AO felt abandoned by his doctor, and that is very sad indeed.  Weigh the risks and benefits of everything you do - and while it is true it is only you that can decide what you will put in your own body - there is no crystal ball that will tell us who will get which side effect.  Careful monitoring after starting new medications with awareness of potential is paramount.

PF wishes to all,
Carrie
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