After 9 years of dealing with this hell I finally found a neurologist that actually spent the time to take an hour to sit down and just listen to everything I had to say before making an opinion. For the first 6 years I had no idea what was happening and about 3 years ago I randomly ran across the term cluster headache and self diagnosed myself but still could not get anyone to listen to me, they would just tell me I had migraines, write a prescription for pain, and move on to the next patient. There is already a big feeling of relief just having someone confirm it and start a real plan for me but I know there is still a long way to go. Below is the details for what they want to start me on to hopefully break the current cluster and prevent future ones. I know that everyone is different but please let me know if you see anything that obviously seems wrong.

Verapamil: 40MG 1/day for 5 days, then 1 tablet twice a day for 1 week, then 2 tables in the am and 1 tablet pm

Prednisone:  20MG 3 tablets for 4 days, 2 tablets for 4 days, 1 tablet for 4 days, 1/2 tablet for 4 days

Vitamin B2: 400 MG daily

Magnesium: Work up to 1000 MG daily (I am supposed to start with 250 mg tablets and work up as quickly as I can depending on what my stomach can handle)

I am supposed to check in with her every 2-3 days and we will adjust if things do not get better.

I also have a prescription for Oxygen but she had I will probably have a difficult time with getting insurance to help. If insurance will not help how many should I expect to pay for the tanks (I am in the United States)? I see that I can buy the mask on this site and that the mask is disposable, it is a one use mask or will I get multiple uses out of each one?

Thank you!

Hi ericy and welcome,
The Verapamil is a rather low dosage for treating CH's! The normal dosage is 360-480mg/day, some folk have to go as high as a 1000mg/day before they get any relief, and the Prednisone is normally given as a 7 day taper dose until the Verapamil kicks in. As for the Magnesium 400-500mg/day is normally sufficient.

Cheers hoppy

Hi Hoppy and thank you for the information. I will get in contact with the neurologist today to ask about these items and reply back with what I find out. It may just be luck as I would be surprised if the prednisone is kicking in this fast but my nightly visit was only at a 4 instead of the normal 7 or 8 that it has been every other night for the last 3 weeks.

I also thought I would add some additional information since I saw some of the posts for newbies.

I started having these "headaches" shortly after my 18th birthday and I am now 27. Over time I have noticed that my amount of clusters per year have went down but the length of each cycle has increased, is this typical? For the past 3 years my average cycle is 6-8 weeks 2 times a year, in the spring and late fall.

Eric.
Where are you in NC?

Judy

Judy,

I am in Knightdale, just outside of Raleigh.

Eric,

You just need to call one of the O2 suppliers and see if your insurance will cover it for clusters with a Drs prescription (make sure the RX has at least a 15lpm notation for the regulator)

I am on Medicare and therefore had to self pay since Medicare says O2 doesn't help clusters..go figure. If you have to self pay I used AeroCare. M60 tanks are $15 and M tanks $30. The small E tanks were $8 with no limit on how many you could get. However looks like the closest AeroCare to you is Rocky Mount.

Also check with Apria and Lincare. Also be warned each office seems to have their own rules and fees.

As for the cluster mask on this site...definitely get one! I have had mine for over a year and it is well worth the $$. My Neuro even recommends her patients to use the same mask.

Good Luck and please get the O2... it will be a life saver!

Judy
P.S. I'm north of Winston-Salem up near Mt Airy

Rumeke,

Thank you for the information. I did notice that my prescription does not list the lpm so I request a new one. I am glad to hear that the tanks are cheaper than I was expecting but obviously that can still get expensive if you go through the tanks quickly. I will order the cluster mask today.

Howdy. I have always used Lincare....many years self-pay. Judy is right...so ya gotta
get to know the manager...as there seems to be no consistent policy. I've had some
with compassion oozing out of their pores...and a couple who couldn't care less and "we
don't do cash deals for nobody". Ask to meet them...put a face to your name...smooze 'em.


Also...be prepared to pay more...I haven't seen those prices EVER in my experience...
WOW...ch on the cheap....air must be more expensive in Seattle (like everything else!)

Best

Jon

Eric,
I think my RX said up to 12 lpm but all of the regulators they've given me have actually gone up to 15 which will work nicely with the mask.

I think the most I paid was for 2 M tanks a week at my worst. Once I found how life saving it was..we found the money, believe me!

Good luck and here's hoping for pain free nights!
Judy

Judy and Jon,

This is all great information, thank you both. I have found a couple of places near me so I will go in person and visit each of them. I recently purchased my first house so money is tight but I am definitely willing to put some more money on the credit cards to help get some relief.

Judy,

Its cool to meet someone else from NC with the same condition (even though I am sorry that you have it.) it feels weird thinking that you will go through life and never meet someone in person that knows what you are going through.

Like me and many others around the globe, Spring and fall are the [smiley=evil.gif] favourite times to pay you a visit, how long he stays, well that's another story, for me, he would hang around for 8-12 weeks and then just disappear until his next visit.

A good guide to Verapamil is... 2x120mg tabs/day for two weeks.
Then 3x120mg tabs/day for two weeks.
And finally 4x120 tabs/day.
Its also important to have regular blood pressure tests whilst your on Verapamil.

Have you looked into the vitamin D regimen?
You can find all the information on here.
It's had me CH free for the past 4yrs.

Cheers Hoppy

Erich, on the left side of your screen is a button "where we live". Push it. Under NC is a list of 185 clusterheads. 9 in Winston-Salem. Getting together with other sufferers is a great experience. One you'll remember forever.

Eric,

That is the best thing about this site...running into 'neighbors' no matter the reason! The support I have found here helps get me through the long nights when the beast comes to call. I know my old Neuro had 5 chronic and 10 episodic cluster patients before he retired and that was just in Winston.

Sounds like you are being proactive which is great! Hopefully you'll find a good O2 supplier and life will indeed be better. I second Hoppy on the D3 regimen..check it out under  "Anti-Inflammatory Vitamin D3 Regimen and Survey" under "Medications, Treatments and Therapies".

Judy

I got in touch with Batch and will get started on the blood work and buying the vitamins that I need. I also talked with my neurologist about the low dosage of Verapamil and she said she started it that way for two reasons, first my blood pressure was lower than normal when I came in for my visit  and I made a comment about getting side effects from almost every prescription medicine that I take, so she wants to start me off low and make sure I do not have any issues before increasing the dosage.  I am still going through all of the information that batch sent me but it sounds like once that kicks in that I will not need the Verapamil at all but will just need to make sure I keep the oxygen around as a backup.

Thanks for the tip on the "where we live tab" I just moved out of Cary, which is a fairly small city, and I am very surprised to see several people on the list live there. I wish I had joined this site years ago.

Hi ericy
The mask you can buy here on the site is extremely good quality and can be used over and over again.  It will be a long time before you need to buy another one.

ericy wrote on Dec 10^th, 2016 at 11:16am:

I also talked with my neurologist about the low dosage of Verapamil and she said she started it that way for two reasons, first my blood pressure was lower than normal when I came in for my visit  and I made a comment about getting side effects from almost every prescription medicine that I take, so she wants to start me off low and make sure I do not have any issues before increasing the dosage.

Sounds like you've a good neuro who knows CH and tailors how it is treated to match your personal medical history. This is why it is always essential to work with someone with these skills and knowledge as opposed to using our "standard" dose suggestions.

For some unknown reason, many people with CH can tolerate higher doses of verapamil without it significantly impacting blood pressure. So there is possibly potential to go to a higher dose if required.