My doctor is an idiot

[Annette Jones]

I went through 3 1/2 boxes of sumatriptan in two weeks. I called my doctor's office and asked if she could do a pre-authorization with my insurance because I reached my limit and she has decided so make me wait until my appointment in 3 weeks to discuss this. I don't know what I'm going to do. I am literally out of my mind when I get these headaches. I'm new to this website and I completely understand why they are nicknamed suicide headaches. Right now I spend every day wondering when I'm going to get my next headache they've gotten worse over time I cannot function. I've had people call an ambulance despite my request not to because by the time they come the headaches going away.

[mit12]

Annett,

triptans are both a blessing and a curse, they work great but cause rebound headaches. I would suggest trying to figure out something else to controll the headaches and only use triptans for emergencies. I know this is easier said than done, I have been suffering with these for the last 40 plus years. 

[FunTimes]

OXYGEN. Read all about it here and get it as soon as you can. 

[CHfather]

I am getting the very frustrating "Internal Server Error," so I'm hoping that breaking my message into two parts will help. 

You could set up an oxygen system using welding oxygen pretty quickly.  Maybe check with your doctor's office and see whether she is willing to give you a prescription for medical oxygen (which should have been done in the first place).  If not, get started on a welding O2-based system while you look for a better doctor.

Start the D3 regimen.  It helps some people quickly. Not all people or even most people, but you never know, and you want to start it for the future in any event.

 

[CHfather]

(Part 2)  Here's an overview that might help you. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/  Since you're in a pinch right now, be sure to look at the part with the bold heading "Treatments" without O2 . . . 

Too much Imitrex is bad for you, and it can cause your attacks to get worse or your cycle to get longer.  One way to use less is to split your injections.  2mg is enough for most people, but the injector holds 6mg.  Here's some guidance (scroll down 'til you see the videos): https://clusterbusters.org/forums/topic/2446-extending-imitrex/

[Juss]

Respectfully, you are seeing the wrong doctor for the condition. Almost everyone on this forum is. Visit a functional NP, or settle for a functional DO or MD. All western medicine is a pharmaceutical front. Ask your doctor if he is a KOL, Key Opinion Leader. That will tell you all that you need to know.

On that note, you should be able to treat everything with one prophylaxis, at most two. Then, you must target the homocysteine, glutathione, inflammatory markers, and oxidative stress. Your body is in toxic overload. 

Again, all modern doctors are in bed with big pharma and quite often could not care less about you. As long as that bottom line and the mighty dollar is met, they will exploit you for profit and keep you sick. Welcome to the medical-industrial complex.

 Nurse Practitioners are the exception and provide superior  and fundamentally different care. If they are functional medicine or integrative medicine, even better. They only prescribe meta-analysis-proved, clinically proven drugs, with minimal side effects. Translation, what they would prescribe their family. 

I will get hammered for this if you require an abortive more than on a rare circumstance, there is a fundamental flaw with your care, and you need to address the underlying cause(s).

Good luck.

P.S. My Psych NP fixed my Intractable Cluster Headaches and Intractable Migraines, which Jefferson Headache Clinic failed to treat. She did so in a few months from her knowledge in neuropharmacology which neurologists do not have, hundreds of hours in clinical nutrition, which neurologists do not have, and her continual education at neuropharmacology conferences.

The NP did such with a $3 per month drug Toprimate and nutraceuticals that target free radicals and inflammation. My cost never exceeds between the Rx and supplements $65 per month. You tell me. You can have the legal dopers. I never get more than 2 days in bed per month. I used to be bedridden, banging up DHE 3x per day, and Keterolac 2x day, eating over 180 Fioricet per month. Fire your doctor, he ain't qualified.
 

I wish I could find an NP that specializes in Movement Disorders, and Parkinson's. I'd fire this doctor in a NY minute. I hate doctors, except gifted surgeons: I have been blessed with more than a few world-renowned for my surgeries. 

[Annette Jones]

Too bad my insurance won't pay for it the oxygen I mean. But the lady I talked to at my insurance did say that they would pay for it for another condition. I have COPD so I'm going to see if they'll put it in for that.

[spiny]

Hey Annette. They might just do that - provide O2 for COPD. However, That will be a concentrator, which will not deliver the pure O2 that you need for CH or even enough of a flow to help.. You need 100% pure O2 from a non-rebreather mask with a high flow regulator and tank - not a concentrator with a cannula. 

Please take a moment and read the blue banner above for 'New Users' if you have not already done so. It will give you a lot of basic information. 

A lot of us have had to fight for O2, the best abortive out there. It is nuts. Medicare just approved it for CH so the oldies can get it now. Many of us, myself included, use a welding set-up for our O2. It is the same as medical, but comes in a heavy tank of steel as opposed to the medical aluminum tanks. So, it is heavier to haul around. It requires no script and is cheaper than medical.  

A lot of CHers on here will say that you are better off to find something else for preventing hits than triptans. Over time they can be bad for you, so many will search for another abortive to replace it. That may be just O2 or it may be the D3 Vitamin Regimen, or busting. 

You might ask your doctor for a short course of Prednisone to get a break from the hits. Long term use is bad for your hips and shoulders, but a short good break can be a huge help. Also, it's another drug that should not be taken for a long time due to damage to you body. It seems that with meds, we walk a knife edge over help on one side and harm on the other. We have to learn so much on our own it is nuts. But our health requires it.  

Stay with us and perhaps we can help steer you to a pain free future. 

 

[FunTimes]

Annette

Tell them you are going to pay out of pocket and I bet you the price will drop and you get a better deal. You just need someone on the other end of the phone that is willing to work with you. I think mine went down something like 200 bucks a month by paying out of pocket. Things have changed alot in the last 2 years and it is a constant fight with my oxygen company but stay on them and they will most likely give in to you. Last time I had to call I was told due to the oxygen tank shortage they are saving it for people who really need it, I told that to say that again and listen to the words coming out of her mouth. I had my 3 tanks delivered the next day. I am no longer allowed to get the smalled E tanks so they now only bring me larger M and M60 tanks. Makes no sense but more o2 for me so F them!

[CHfather]

8 hours ago, spiny said:

You might ask your doctor for a short course of Prednisone to get a break from the hits.

This is very good advice, but if your doctor is an idiot (I think you have a new one, who might or might not be), it's important for you to know that the standard prednisone "dose pack" won't really work well.  Here is the recommendation from one primary CH resource: "Corticosteroids in the form of prednisone 1 mg/Kg up to 60 mg for four days tapering the dose over
three weeks is a well accepted short-term preventive approach. It often stops the cluster period,
and should be used no more than once a year to avoid aseptic necrosis."

[spiny]

Good advice CHF. I do use the dose pack too, with good effect. Fewer days, but good relief for me. My Neuro just gives me a script for three of them per year. I am good till I go down to one a day.  Perhaps I am just lucky there. And it is easier with a 'regular' doc to get that script if that is the way you have to go.

It is amazing what a few days off can do for your mental health. 

[Juss]

As I offered before, I should have active business accounts at an HVACR supply house (RE Michael) and a Refrigeration supply house (United Refrigeration). After all, I was next in line for the service manager at an HVACR company full of former RE Michael executives. And, I knew a few at United Refrigeration. It comes with being near headquarters.

 If the accounts are active, and in your location, you have access to industrial Oxygen. And, as I explicitly stated before, you won't have access to any refrigerant purchases, nitrogen, welding supplies, tools of the trade, and things of that nature. For the record, I am not losing my EPA 608 universal. That may come in handy. 
 

My HVACR, NATE, and gas fitter licenses are expired, but that should not close the accounts. Again, no freaking R22, R404A, R404B, R410A, and so forth.

[Maryo52]

Amen to prednisone taper. Sometimes you need your sanity restored.

[picaresque]

Have you tried cannibis?

[BoscoPiko]

2 hours ago, picaresque said:

Have you tried cannibis?

I'm not sure who your question is addressed to but I'll chime in and say yes.  I think most of us have and it has no effect on ch..

[MaxHead]

Annette,

Be prepared to try many possible solutions. What works for one person will quite possibly not work for the next. What works for you now may not work six months from now. 

Topiramate appears to work (thank goodness) for Jess. My life improved significantly once I tapered off of it after 3 years and doing so had zero effect on my rCCH. Verapamil helps me some (shortens the duration) but I’ve read many say it doesn’t help them at all. 

Try it all but don’t dally with meds that don’t seem to help  if you aren’t sure, then they aren’t helping  

At all costs try O2 as others have suggested. It has no negative effects but for a large percentage of CH cases, it is an effective abortive. The biggest issue for many people is getting access. I would consider getting a different doctor. 

General neurologists typically know little - or worse, they “know a little” - about cluster. I see a neurologist at a teaching hospital (medical school). Check the closest hospitals to you and see if someone on staff has a cluster specialty. I drive (or more accurately, someone drives me) 5 hours round trip 1-2 times monthly for treatments (occipital nerve blocks, experimenting with Botox…not helpful at all so far, etc.). 

Wishing you good luck with your battle. Expect it to be continuous and ever-changing. You must be curious, courageous and in control of your care.