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  New CH.com Forum › Cluster Headache Help and Support › Medications,  Treatments,  Therapies › Freaking Frustrating
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Freaking Frustrating (Read 4952 times)
SimplyBecky
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Freaking Frustrating
Feb 28th, 2011 at 8:46pm  
My neurologist has prescribed prednisone and sumatriptan injections for my CH's.  This is NOT the way I wanted to go.  I specifically did not want to be put on prednisone because of weight gain.  I have enough problems with my weight.  And to be honest, steroids scare the hell out of me.  I asked him about O2, and he said it doesn't usually work.  I asked him if I could try it anyway, but he wouldn't give me an rX for it.  Wtf is the big deal?  I mean, it's O2.  That sounds a lot better and safer than pumping me full of drugs.  To make matters worse, he's the only neurologist within an hour and a half that accepts my insurance.  I don't think he's a bad neurologist.  I just don't get why he doesn't want to give me O2.  He seems certain that the prednisone will clear everything up.

I am aware that a lot of you use O2 through welding shops.  I've talked to my family about this over and over, and they're so uncomfortable with me going that route that it's turned into a fight every time I bring it up.

So I've been taking the prednisone 3 times a day.  It hasn't seemed to help at all.  The sumatriptan was harder to get.  The pharmacy just got it in today, so I haven't tried it yet.  The injections are those air jet injection things.  I know this seems like a funny question, given the fact that CH's are excruciating, but do the injections hurt?  Do any of you experience side effects with sumatriptan?

I'm having attacks nightly now.  I feel like I can't take it any more.  I can't function during the day because I'm so exhausted.  I've missed so much school that I'm close to getting kicked out.  I just want all of this to end so I can have a normal life again.  I feel horrible all the time. 

Is there some way I can demand this doctor to give me O2? 
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« Last Edit: Feb 28th, 2011 at 8:46pm by SimplyBecky »  
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Re: Freaking Frustrating
Reply #1 - Feb 28th, 2011 at 9:36pm  
Sure, you can demand. He can also demand that you get out of his office.

Did you arm yourself when you walked in his door with any of the info you can get here:

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Re: Freaking Frustrating
Reply #2 - Feb 28th, 2011 at 9:43pm  
I just told him about all I had read about how O2 helps so many people on this site.  He said that it didn't help any of his patients that he had tried it on.  I kind of got the sense that he didn't want to be told how to do his job and that he knew so much more than me because he was the doctor.  I'm sure he does know more than me.  I don't understand why he was so insistent about not letting me have O2.
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Re: Freaking Frustrating
Reply #3 - Feb 28th, 2011 at 9:51pm  
The prednisone is usually prescribed as a transitional drug. It'll stop most attacks dead in their tracks, but you can't stay on it very long. Usually 10-14 days. You start out big - 60-80mg for the first few days, then taper down over the course of the next week or so. You can't just stop it cold. Your adrenal glands will freak.

Every doc I've ever talked to said the same thing about taking prednisone - it's most effective if you take the entire day's dosage in the morning, when you first wake up. Simulates your body's own production of the chemical it's replacing.

The reason they call it "transitional" is that it's meant to stop the attacks while you are starting a regular, longer-term preventative, like verapamil or lithium, for example. It takes 7-14 days for drugs like these to build up to therapeutic levels in your body.

Or you could detox completely for 5 days and then bust:

clusterbusters.clusterheadaches.com

I was chronic for years. Now I'm pain free since May, 2010.

I ain't sayin' - I'm just sayin'.
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Re: Freaking Frustrating
Reply #4 - Feb 28th, 2011 at 9:52pm  
SimplyBecky wrote on Feb 28th, 2011 at 8:46pm:
My neurologist has prescribed prednisone and sumatriptan injections for my CH's.  This is NOT the way I wanted to go.  I specifically did not want to be put on prednisone because of weight gain.  I have enough problems with my weight.  And to be honest, steroids scare the hell out of me.  I asked him about O2, and he said it doesn't usually work.  I asked him if I could try it anyway, but he wouldn't give me an rX for it.  Wtf is the big deal?  I mean, it's O2.  That sounds a lot better and safer than pumping me full of drugs.  To make matters worse, he's the only neurologist within an hour and a half that accepts my insurance.  I don't think he's a bad neurologist.  I just don't get why he doesn't want to give me O2.  He seems certain that the prednisone will clear everything up.

I am aware that a lot of you use O2 through welding shops.  I've talked to my family about this over and over, and they're so uncomfortable with me going that route that it's turned into a fight every time I bring it up.

So I've been taking the prednisone 3 times a day.  It hasn't seemed to help at all.  The sumatriptan was harder to get.  The pharmacy just got it in today, so I haven't tried it yet.  The injections are those air jet injection things.  I know this seems like a funny question, given the fact that CH's are excruciating, but do the injections hurt?  Do any of you experience side effects with sumatriptan?

I'm having attacks nightly now.  I feel like I can't take it any more.  I can't function during the day because I'm so exhausted.  I've missed so much school that I'm close to getting kicked out.  I just want all of this to end so I can have a normal life again.  I feel horrible all the time. 

Is there some way I can demand this doctor to give me O2? 


I don't have any advice, but my husband is going through this same thing right n ow. His doctor gave the Imitrex injections and prednisone, but acted like the oxygen was something to try maybe later on if needed. Ugh, doctors.

Can you try to ask it another way, maybe phrasing it like "I'm having trouble understanding why/can you help me understand...."

I prefer just insisting on things but I'm told it won't wor k:\
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Re: Freaking Frustrating
Reply #5 - Feb 28th, 2011 at 9:54pm  
SimplyBecky wrote on Feb 28th, 2011 at 9:43pm:
I just told him about all I had read about how O2 helps so many people on this site.  He said that it didn't help any of his patients that he had tried it on.  I kind of got the sense that he didn't want to be told how to do his job and that he knew so much more than me because he was the doctor.  I'm sure he does know more than me.  I don't understand why he was so insistent about not letting me have O2. 

That's why I asked if you were armed. Print the studies out and give them to him. Send them if you can't drive that far. He's not going to take your word for it. And yes, he has an ego problem. Provide him with the studies.
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Re: Freaking Frustrating
Reply #6 - Feb 28th, 2011 at 10:13pm  
Becky I'm sure it will be difficult to get another appointment right away, but perhaps you can call the neuro after a day or two and let him know that although you expected some relief from the prednisone, it hasn't happened and you are more concerned about the potential side effects.

Then say, Doctor, I'd like to send you some of the research I've found on oxygen therapy, for your reconsideration. I'll forward it over today (and get it in the mail!) and call you in a couple of days to give you a chance to read it. Then print out everything we have here, plus what Bob Johnson posts regularly.

Maybe that will help? Heck you're doing his other patients a favor too!
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Re: Freaking Frustrating
Reply #7 - Feb 28th, 2011 at 11:51pm  
Sorry you're dealing with all that jazz.
You need to search this site or OUCh and print out literature with peer reviewed articles .

If you choose to use omitted you may want to consider the injections via syringe and vial or at least the auto injectors which you can take a part so that you can use what you need without over doing it.

Keep pushing for oxygen and have your family read the information too! They need an education as well

Good luck
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Re: Freaking Frustrating
Reply #8 - Mar 1st, 2011 at 8:19am  
Hey Becky,

This isn't an isolated problem. 

Too many PCPs and Neurologists still refuse to prescribe oxygen therapy as an acute treatment/abortive for cluster headache and that frustrates all of us who know how well it works to abort our cluster headaches.

The attached abstract from the cluster headache survey many of us took (1134 to be exact) in 2008 gives a breakdown why physicians refused to prescribe oxygen therapy.

The abstract also lists oxygen therapy as being 70% effective in aborting cluster headache.  This figure is consistent with the latest study of oxygen therapy by Dr. Peter Goadsby.

The following link provides the EFNS guidelines on the treatment of cluster headache and other trigeminal-autonomic cephalalgias.  You'll note that oxygen therapy is at the top of the list of acute treatments for cluster headache.  You might want to print a copy of this standard of care for cluster headache and take along for your next appointment with your neurologist or send him an email with the link and the attached abstract.

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When you do finally see your neurologist ask him what oxygen flow rate he prescribed that didn't work and did he specify a non-rebreathing mask?  Finally you might ask if he provided any training for his patients on how to use oxygen therapy effectively?  The home oxygen delivery folks will not provide this training out of fear of litigation.  They'll only show you how to attach the regulator to the oxygen cylinder and oxygen mask tubing to the regulator.

Finally, I own my own 0-60 liter/minute regulator, Oxygen demand valve, and O2PTIMASK™ kit so my cost per abort before insurance worked out to $1.00...  With insurance, my co-pay worked out to 20 cents/abort.  Contrast that with a 6mg. stat pen shot of imitrex that costs costs $80... an imitrex 12mg. nasal spray that costs $20 per abort and a 25mg. imitrex tab that costs $7 and you'll see that oxygen therapy has a much greater bang for the buck.

Using oxygen flow rates that support hyperventilation (≥25 liters/minute) oxygen therapy is nearly 100% effective with abort times averaging 7 minutes depending on the pain level.  Abort times this short rival imitrex injections but there's no side effects with oxygen therapy...

Take care,

V/R, Batch
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« Last Edit: Mar 1st, 2011 at 8:20am by Batch »  
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Re: Freaking Frustrating
Reply #9 - Mar 1st, 2011 at 8:26am  
Becky,
This may sound drastic but you may need to fire your Doctor and find one who will work with you.
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Re: Freaking Frustrating
Reply #10 - Mar 1st, 2011 at 8:31pm  
Brew wrote on Feb 28th, 2011 at 9:36pm:
Sure, you can demand. He can also demand that you get out of his office.


The bottom line Doc is, Iv'e got a Glock in my trousers and you aint gettin outa here until I get my cylinder and mask (@25lpm)

Brew, having said that..If I was inside 'Broken Britains' Penal system..
I wouldn't have any trouble IN THE LEAST getting O2!....

I am very sorry peeps, just the Vodka and dusted off my soapbox for a rant!
Will be more behaved tomorrow, honestly!

Nite,nite!

Gary
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Re: Freaking Frustrating
Reply #11 - Mar 16th, 2011 at 6:23am  
Becky,

I'm so sorry to hear that you're having to go through this nonsense with your neurologist.  I am very blessed that it was actually my g.p. that SUGGESTED O2 as a treatment for my cluster headaches!

As for prednisone, I usually have to go on a 10-12 day stretch of it a couple of times a year for breathing issues.  Ironically, it makes makes my psoriasis and psoriatic arthritis practically clear up (not a bad side effect, actually), but coming off the steroids suck big time.  For me it's incredibly painful.  Everything being relative, it's in no way as painful as a cluster headache and not even nearly as bad as some of my worst migraines, but it's internal and in my tissues from my shoulderblades up.  It's a very strange pain.  I hope you don't have to deal with that on top of everything else.

I will keep you in my prayers!  Good luck!
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Re: Freaking Frustrating
Reply #12 - Mar 16th, 2011 at 8:56pm  
Thank you.  His reasoning behind no oxygen is that it's too dangerous and only as a last resort will he give it to me.  There was a guy in this area who recently had has house burn down because of his oxygen tank.  It killed a few people.  That doesn't help matters much. 

I was taking prednisone three times a day.  Thank God it didn't make me gain weight.  That's what everyone said it would do, and I have enough problems with that.  I've actually lost about 15 lbs. over the last few weeks, but I'm sure that's stress related.  I'm just not hungry any more.  When I went off the prednisone, the only thing I noticed was that my heart would beat really fast and hard.  I'm not sure if that was prednisone related or not.  Sometimes I'd be sitting on my couch doing nothing, and my heart rate would be around 130 beats a minute.  I thought that was strange.

I'm on topamax now, and it's doing nothing.  I have another appt. with my neurologist next week.  Tomorrow I'm going to the chiropractor.  I've never been to one before, so I'm sure I can benefit from it in some way.  If he can take the ache out of my neck, that will make my day.  I bet most of my tension headaches are from that. 

I've got so much crap going on from side effects of sumatriptan and other stuff that I haven't felt myself in months.  At least my family is able to joke about it with me and not call my medications "crazy pills" like a lot of other people in my life are doing.  As long as I'm able to laugh about something, I don't feel so hopeless.

Anyway, thanks for thinking of me.  If you hear of a strangled neurologist in western PA, it's probably my doing.
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Re: Freaking Frustrating
Reply #13 - Mar 16th, 2011 at 9:25pm  
Quote:
If you hear of a strangled neurologist in western PA, it's probably my doing.


    I'm happy to see that you still have a sense of humor.   Believe me...it is a needed frame of mind around here.

   IF, after trying everything you can to get this Dr. to do what is right for you,. please try welders 02.   No prescrition, cheaper actually and a bigger tank that will last a lot longer.   There is NO difference between medical and welders 02 so it's safe.   

An e-tank cost me 10.00.
A  welders tank is 4 e-tanks and cost me 24.00

I wish you luck and one more thing....Do NOT forget that you suffer one of the most painful conditions there is.  Therefore you are strong and tough.  Be brave and do not take NO for an answer.

We're all with you Becky.   

Linda

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Re: Freaking Frustrating
Reply #14 - Mar 16th, 2011 at 9:46pm  
Hi Becky,
I am so so sorry that you are going through this, and believe me I know EXACTLY where you are coming from - just 6 weeks ago, I was in your exact same position. I had a screaming match in my neurologist's office because he refused to let me try O2. He was so insitent that I had migraines, and wanted me to go on Topamax for a few months to see if that helped.

Then Brew gave me a kick up the proverbial, and told me that there was only so much that the guys here could do to help me, and that I was the only one that could go and get the O2. So I started digging - I was lucky, a friend of mine arranged the theft of a tank of oxygen from a hospital. And it worked for me, my diagnosis was confirmed, and I managed to get a legal supply. I hope you can find a way to get your hands on some oxygen...... I'm sure that my doctor was like what the others have said about yours - his ego got in the way. If your doctor won't listen to the information you take him, I sure hope you can find another one who will.

All the best.........
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Re: Freaking Frustrating
Reply #15 - Mar 16th, 2011 at 10:39pm  
I do indeed know about the welding O2 as an alternative.  Batch told me all about it.  The problem with this right now is that my family (mainly my mother and little boy) is very nervous about me using it.  We've talked about all of the options, and I agreed to not get a tank from a welder until my neurologist exhausted all of his efforts.  She'd be more comfortable if I got it from him.  I told her that you all said it was 100% O2, but they're just not comfortable with it.  My mom is worrying enough.  I know that it's MY problem and that I'M the one going crazy, but I need my family's support more than anything right now.  They're partly in this with me.  If that sounds like a poor excuse, then so be it.  I just know that I need them to worry as little as possible.  The more worried and scared my son is, the worse it is for me.

I'm not quite sure what my neurologist's next step will be.  So far, he's only tried sumatriptan injections, prednisone, and then the topamax.  I'm not sure what he has left to try before he'll prescribe O2.  I guess I'll find out next week.  I'm still hopeful.
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Re: Freaking Frustrating
Reply #16 - Mar 17th, 2011 at 12:04am  
Becky, it's obvious to me that your Neuro is covering his lack of knowledge about O2 for CH. With statements like, "it's too dangerous", it will be difficult to educate him. I've been using O2 for CH some 21yrs.

Below are some direct quotes from my "OXYGEN PATIENT INSTRUCTIONS" handbook.

"Oxygen is very safe to use when you create the proper environment. Oxygen will not explode or burn, but it will increase the flammability of objects near the concentrated oxygen. It will also cause anything that is burning to burn hotter and faster."

"Keep all oxygen equipment at least 10 feet away from any source of heat. Common sources to be concerned with are: open flames, stoves, space heaters, furnaces, smoking pipes, cigars and cigarettes."

"Never use grease, oil or other petroleum products on or near any oxygen equipment. Simply using oil based hair products, hand lotions or petroleum jelly (Vaseline) when handling oxygen equipment can place you at risk. Use only water based cosmetics or creams."

Hope this is useful.   

Best of Luck, Don
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Re: Freaking Frustrating
Reply #17 - Mar 17th, 2011 at 12:35am  
I don't know that it will convince my neurologist, but I'll definitely show my mom.  I think she is more worried about it not being 100% O2 though. 

I feel like there's another reason he doesn't want me to have O2 and he's not telling me.  There are 3 different neurologists in that office, so I'm going to ask to see another one.  While it would probably be unethical for him to say anything negitive about my doctor, he might at least be more open to things and less cocky.
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Re: Freaking Frustrating
Reply #18 - Mar 17th, 2011 at 12:42am  
Sorry, I should have said these are quotes from  my Medical Oxygen Patients handbook....

Don

What dose is the Prednisone? For most of us we start at 60mg a day and taper off over 7 to 14 days.
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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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Re: Freaking Frustrating
Reply #19 - Mar 17th, 2011 at 7:56am  
SimplyBecky, I'm not usually one to rouse rabble, or even to arouse one person to become a rabble, but I'm going to have to go with this: you're being way too passive...with your family and your doc. I'm not saying you ought to start armed insurrection or even be rude, but listen girl, it's your pain, and your responsibility to address the pain. Get a small O2 tank for starters (an E tank for example) and read up on what you need to do to get hooked up. Sometimes the idea of those big green monsters are too much at first. But at any rate, take charge of your life here...no one else will! And for goodness sakes, switch docs. This one sounds so much more interested in his own opinion than in helping you. There. I've ranted, but you need to act. These can fade on their own but why wait? Good luck, and God bless. lance
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Re: Freaking Frustrating
Reply #20 - Mar 17th, 2011 at 8:19am  
And I'll step in here again and agree totally with Lance. They have no idea what your pain is like - you can describe it til the cows come home, but they've never felt it.

A lot of people I spoke to had concerns about the "dangers" of using pure oxygen. Hell, isn't almost everything we do dangerous? Driving a car? Crossing the road? Even the fish you have for dinner tonight could give you food poisoning. You could be allergic to the medication the doctor gives you. What do you do? You educate yourself about the risks, and you do what you can to reduce them.

Beat your neurologist around the head with an O2 tank - preferably when it's full - and then when he gives you the script you need to get an ongoing supply, the pain will be reduced for both of you  Cheesy

But seriously..... your mother obviously cares a lot, but you gotta do what you gotta do to help yourself here first, and give yourself your life back first.

I think my second cycle has finally ended, but now that I have a headache specialist that believes me and I have my O2, the next cycle (while I am still dreading it!!!) is nowhere near as scary as it would have been if I was still where you are - which is where I was 6 weeks ago.

Good luck... keep pushing..... you'll get there. Be strong!!!!! It WILL be worth it.
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Re: Freaking Frustrating
Reply #21 - Mar 18th, 2011 at 9:49am  
Hi Becky -
I can't speak for anyone else, but I find the Sumavel ridiculously painful!  I would rather have the shots any day.  Plus you have to use the whole dose so when it's gone..it's gone.  I find pinching my tummy and using it there to be much less painful than the leg, surprisingly.  I used it once in my thigh, screamed some choice words and ended up with a golf ball size bruise.  The stomach leaves a welt for about an hour and then just a tiny dot.  Stay two inches away from the belly button though.  Oh and it makes a REALLY loud noise so be prepared for that too.  Good news, it works incredibly fast (longest for me was twelve minutes) and I could care less how bad it hurts when I have a CH.
Hope you work things out with your doctor and are PF soon.
Oh and I started a Prednisone 6 day pack and have been PF for the last two days and nights now.
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Re: Freaking Frustrating
Reply #22 - Mar 18th, 2011 at 2:11pm  
Melby29 wrote on Mar 17th, 2011 at 8:19am:
Beat your neurologist around the head with an O2 tank - preferably when it's full - and then when he gives you the script you need to get an ongoing supply, the pain will be reduced for both of you  Cheesy



Good one Melby.  Grin

Sounds to me like it's time to let your rebel flag fly Becky (and maybe head straight to the welding supply place for your O2, telling the family "SCREW YOU - I'm not going to allow your pathetic ignorance to keep me from non toxic relief from the worst pain known to medical science anymore" - if that's possible).

It's truly sad, but CH'ers who strictly go through their doctor for their treatments are so often the ones who end up suffering tremendously.

As far as other things that probably couldn't hurt to try are concerned, have you seen the recent thread here about high dose vitamin D3 - like a whopping 15,000 iu a day? I was pretty skeptical about it, wasn't even paying much attention, but now people are trying it and some are reporting dramatic results (!!) This is the one I'm talking about:
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« Last Edit: Mar 18th, 2011 at 2:15pm by bejeeber »  
CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.
bejeeber bejeeber Enter your address line 1 here  
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Mike NZ
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Oxygen rocks! D3 too!


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Re: Freaking Frustrating
Reply #23 - Mar 18th, 2011 at 4:20pm  
bejeeber wrote on Mar 18th, 2011 at 2:11pm:
[quote author=2C040D03185358610 link=1298943981/20#20 date=1300364341]
Sounds to me like it's time to let your rebel flag fly Becky (and maybe head straight to the welding supply place for your O2, telling the family "SCREW YOU - I'm not going to allow your pathetic ignorance to keep me from non toxic relief from the worst pain known to medical science anymore" - if that's possible).


I totally agree with you on this point.

My better half is not comfortable around any gas appliance like the fire or the BBQ (although fine with the gas hob), but has zero issues at all with oxygen.

Since oxygen does such an amazing job at aborting CHs, this is a time for your family to take a back seat and realise just how important oxygen is.

Once you've got oxygen and are using it well you'll wonder why on earth you didn't get it sooner. Then you'll be like so many people here in helping people to get it.
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Melby29
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Re: Freaking Frustrating
Reply #24 - Mar 18th, 2011 at 7:07pm  
I'm so grateful to the guy who stole the tank of O2 for me from the hospital, after my neuro refused to let me try it, that I am now living with him  Cheesy Cheesy Cheesy Cheesy Cheesy Cheesy Cheesy
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