Blue Cross/Blue Shield of Alabama won't pay for my Imitrex Injections and I am taking over the counter meds Advil Migraine, Extra Strength Tylenol and so many others it would make a junkie envious. I am so scared to go to bed at night as I wake up and have two to three clusters a night.  Topamax is causing my feet to tingle and go numb.  Prednisone makes everything taste awful (talk about a great weight loss drug). I feel like a walking zombie and the shadow is still there in my left temple during the day.  I tremble and shake all the time now and don't know if I will ever be normal again.  This is the longest cycle for me as usually it is just 4 weeks.  Last week CVS tells me the Relpax the ER prescribed will cost me $540 Ouch.  Drug companies don't care about people just the all mighty dollar.   Why couldn't I be normal?   Why didn't O2 work?     My wife wants me to call the Neuro (Dr. Hamp Greene) again but why he don't ever want to see me and can't even get my scripts correct.  GOD PLEASE MAKE THEM GO AWAY!!!

Thanks but the O2 doesn't work even at the hospital

O2 will usually only work if administered at the very onset of an attack, and if it's a strong attack, high flow rates of at least 15 LPM, with a non rebreather mask are often required.

Did you receive O2 right at the onset of an attack at the hospital? As you may have already noticed, doctors and hospitals commonly get things wrong when it comes to CH.

Anyway, lots of other possible ways to drive off this beast.

I think you should call your neuro and get an appointment.  While you are waiting, there are a bunch of things you can try.

1) Put away the tylenol, advil, etc.  These do not work for cluster headeaches and are dangerous if you use more than the dosing instructions on the bottle recommend.  Some of these OTC drugs contain the same ingredients so you can get an overdose if you are using multiple brands on the same day, even at the recommended dosing level.

2) Tell us how you are using the oxygen.  This is really important.  Do you have a non-rebreather mask (the best method) or are you using nasal cannula?  How soon after your first symptom do you start the O2?  What flow rate do you use?  How many minutes do you use the O2?

3) See the tips on this site about using Red Bull or other caffeine/taurine drink to support your O2 usage.  I've never tried it, but it seems to work for a lot of people.

4) Melatonin is a cheap OTC prevention drug that works for some episodics who get mostly nighttime headaches.  See the tips on this board about dosing recommendations.  I'm a regular episodic with nighttime headaches that run April 1 to May 15.  I started at 3 mg then titrated up to 6mg this cycle.  I have not had a nighttime headache since I hit the 6mg mark.  Some people need to titrate to higher doses to get results.  The regimen I've seen listed on this board is to increase by 3mg every 5 days up to 15mg or until you get a result.

Things you should discuss with your neuro:

1) Feet tingling - this could be a symptom of peripheral neuropathy and you need to talk to your neuro asap to find out what is causing it.  I think topomax is prescribed off label to PREVENT peripheral neuropathy.  I'm doing chemo right now and am taking a similar drug (Neurontin) to treat my peripheral neuropathy.  Ask your neuro to explain what symptoms he is trying to treat with the Topomax.

2) Trembling and shaking - this could be a side effect of Lithium, but you don't list that med.  You need to talk with your neuro to find out why you are having this side effect.

3) If your preventatives are not working, talk to your neuro about other choices.  For example, Verapamil is a blood pressure lowering drug with relatively few side effects that works for many people with CH.  You can search this board for other preventative choices.

4) If you're not happy with your neuro, start looking for a new one (but still make an appointment with your current one - you can always break it if you get another neuro in the meantime).  There are a lot out there, and they differ tremendously in their office manner, knowledge of CH, and willingness to work with a patient.

Hope this helps,
Laurie

Will BC/BS pay for generic imitrex tablets, or nasal spray, or sublinguals like Maxalt?  Maybe they're scared of the price of the brand-name drug, but the generic works just fine (at least for me) -- sometimes they'll pay for tabs if they won't pay for injections.  I know the tabs take longer to work, but they do work (again, at least for me), and maybe your insurer will pay for them. 
Also, maybe your local Wal-Mart or Target carries them?  If so, they'll be much cheaper than your local Walgreens, CVS, or whatever.
I've been there with the no-sleep thing -- 20 days without more than two hours at a time.  Doc likened it to PTSD,  which I think is true.  You need to get to a neuro who knows this beast and will give you the right meds that you can afford.

Did they say why they won't pay for it?

(((Hugs)))

It's hard we know, but we all know what you're going through.  Neither o2 or imi works for me.  You really should stop with the over the counter stuff, you could be seriously damaging your liver, especially when combining them with so many other medications.

Thank God Imitrex works for you.  Some of us are not so lucky.  A lot of neuros hand out free samples like candy.  Call yours, explain your insurance isn't paying and ask for 1) a letter of medical necessity for your insurance company and 2) free samples to use until this gets resolved.  Then use the tips recommended to stretch one dose into multiple doses.

Prednisone could be what's making you jittery.  Sometimes for how little good it does you it's better to just go off of it--it has a tendency to make things harder to handle, at least for me, and it also seemed to make between hit shadows worse AND made it harder to sleep when I wasn't having a hit, which is a disaster.

The food issues and the tingling in hands and feet are very common side effects with Topamax.  When I went on it the tingling was so bad I had trouble walking sometimes and also saw bursts of color around every source of light. Side effects decrease a bit with time, so if you're still ramping up your dose, slow down the increase a bit and give your body a chance to catch up.  If you're not ramping up your dose you may want to ask your neuro about that too.

Also, the Topamax should make you sleep through the night if it's at the correct dose.  Ignore instructions to take it in two doses (some in morning some at night) and take it ALL at night.  It has a very long half life so this shouldn't have a negative effect on you.  Instead it should knock you out into peaceful sleep for at least a few hours.  Dosing this way also reduces some of that daytime brain fog, or at least it did for me.

One other thing that really seemed to help me:  Try to stick with a schedule.  Try to go to bed at exactly the same time every night, try to get enough sleep even though you're afraid of it, this really does help me a great deal.  When you're not SO overtired it's easier to not be in such distress the rest of the time.

wow, my heart goes out to u...i am envious of ppl who are not afraid to fall asleep...how many mg of topamax are u on...im on 100mg...idk if i can tell a difference, but i have the shaking too...my neuro prescribed me a beta blocker called propanolol(spelling may not be right) but that has helped with my shakes along with klonopin 2mg 3x a day...im in school to be a beauty stylist...would u come to get ur hair cut from shakes mCgee here...prob not! i used to be so confident to cut hair now i have zero...i am new to this site but sooo happy that i found it!