Is cycle coming to an end?

[Sammers]

Hello

I am new here.
I suffered my first CH in 2017 altough then it was not diagnosed as CH. Since the 1st of august i am having my second cycle which is a lot more intense then then first time in 2017. Fortunatly the neurologist diagnosed me pretty fast. He gave me verapamil 240 (2 pills a day), imitrex for the really heavy attacks and sumatriptan tablets if I feel the attacks come. (Works for me after 40 minutes) I am taking the verapamil for 7 days now and since the last 4 days i did not suffer massive attacks anymore. I still feel its there (sensitive eye and temple)
Is it a sign the cycle is coming to an end? I am getting an MRI the 2nd of october to rule out chronical CH.

Thank you!

[Freud]

The MRI will rule out anatomical anomalies that cause CH like pain. Your Ch is considered chronic if you go a year with no more than a 3 week break. A few things to get this rolling. First imitrex pills are next to worth less. Try and get the imitrex injections. It’s best to get the 6mg shots and break them down so you get 2-3 doses per injection. The injectors stop a CH in 5-15min. You should have oxygen as well. It’s a life saver. Often aborts an attack in 3-10min.  Lastly the extended release verapamil is not as favorable as using the 80mg immediate release tabs. But if it’s working for you then great. Also @Batch has a vitamin D protocol that has helped a lot of people.

[FunTimes]

I would not think your cycle is ending I think the Verapamil may be kicking in. It can take up to a week for you to start feeling the effects from that. Most times your doctor will give you a Prednisone taper to hold you over until the Verap starts to work. You are better off without the prednisone, that can do some harm to your joints.. 

MRI is good to rule out any other things that may be going on and like Freud said you will want to look into getting oxygen to abort your attacks. I also will down a 5hr energy drink at the start of a cluster to help the oxygen kick in faster for a quick abort or to help some of the stubborn ones go away. 

Tuns of information on this site and everyone is here to help so read as much as you can and ask questions.. 

[Sammers]

Yes i think the verapamil is working for me(thank god). Just hoping it works untill the beast goes to sleep and sleeps for a long time.. Monday i get my blood checked to see my vitamine D values. I will talk about Oxygen with my neuro when i see him 2nd of october.

Thank you for answering!

[FunTimes]

Oxygen is the best option for aborting. you will most likely need to order your own regulators for the flow rate of up to 25lpm  you can get them from amazon. You will want at least a few E tanks and 1 M or M60 tank

This regulator will work on E tanks

https://www.amazon.com/EverOne-Oxygen-Regulator-Liters-Connection/dp/B07L9P7V55/ref=sr_1_fkmrnull_1_sspa?keywords=25plm+oxygen+regulator&qid=1554376658&s=gateway&sr=8-1-fkmrnull-spons&psc=1

This one will work on the M and M60 tanks

https://www.amazon.com/Oxygen-Regulator-Standard-Body-CGA540-protector/dp/B00BXRBJG8/ref=sr_1_fkmrnull_3_sspa?keywords=540+CGA+oxygen+regulator+0-25lpm&qid=1554376819&s=gateway&sr=8-3-fkmrnull-spons&psc=1

 

[Sammers]

Its strange, i asked my neuro about Oxygen and he replied it only works in 50 % of the cases and it's difficult to get it at your home. Here i read a lot people are helped with Oxygen and it has no side affects. Will try to convince him in the next appointment.

I am pretty optimistic the cycle is ending, the fog in my head is lifting a little bit more every day.

[Dallas Denny]

Welcome to the community sammers!

If you're in the US getting O2 and getting insurance to pay for it can be a real PITA!

I'm on Medicare and they won't cover it for clusters....so, I bought a large cylinder of welding oxygen, a welding oxygen regulator, and the Clustero2kit mask and set up my own rig....cost me about $375 and refills/exchange runs $23.

O2 is a clusterheads best friend!

Rules and regulations vary in other parts of the world.....very easy in some and hard in others!

Dallas Denny 

[Sammers]

I live in Belgium. If the neuro prescribes O2, the insurance pays a big part of it.

Just need to convince him to prescribe it. But for now i am good with the verapamil, I did not have an attack for the last 3 days!

Thank you for the information Dallas Denny!

[BKP]

On 8/29/2019 at 9:41 AM, FunTimes said:

I would not think your cycle is ending I think the Verapamil may be kicking in. It can take up to a week for you to start feeling the effects from that. Most times your doctor will give you a Prednisone taper to hold you over until the Verap starts to work. You are better off without the prednisone, that can do some harm to your joints.. 

MRI is good to rule out any other things that may be going on and like Freud said you will want to look into getting oxygen to abort your attacks. I also will down a 5hr energy drink at the start of a cluster to help the oxygen kick in faster for a quick abort or to help some of the stubborn ones go away. 

Tuns of information on this site and everyone is here to help so read as much as you can and ask questions.. 

I've heard of the energy drinks working for people. For me, they make it feel 10 times worse. Sigh....

[jmurrell62]

While there is no such thing as a sure thing, O2 is the closest thing to it.  When I was diagnosed and got O2 my world changed, for the better.  

[Pebblesthecorgi]

Even if O2 only works for 50% of cluster sufferers it is irrational not to try it.  Its safe, cheap and effective.  The cost burden is less than any other intervention.  I will never understand the thinking of someone in medicine when they deny trying a treatment because it does not work for everyone.  There are very few one size fits all conditions in medicine and many medical interventions and treatments have less than 50% efficacy.  We do not hesitate to "try anything" for a cancer patient even if there is a less than 10% chance of efficacy.  Lives are interrupted, rendered nonproductive  or ended because of inadequate treatment of cluster headaches.  There is a special place in hell for those who deny the opportunity to try O2 or deny reimbursement for O2.

[BKP]

On 9/6/2019 at 9:30 PM, Pebblesthecorgi said:

Even if O2 only works for 50% of cluster sufferers it is irrational not to try it.  Its safe, cheap and effective.  The cost burden is less than any other intervention.  I will never understand the thinking of someone in medicine when they deny trying a treatment because it does not work for everyone.  There are very few one size fits all conditions in medicine and many medical interventions and treatments have less than 50% efficacy.  We do not hesitate to "try anything" for a cancer patient even if there is a less than 10% chance of efficacy.  Lives are interrupted, rendered nonproductive  or ended because of inadequate treatment of cluster headaches.  There is a special place in hell for those who deny the opportunity to try O2 or deny reimbursement for O2.

Yeah, that's the problem. Some doctors just do not want to prescribe oxygen for these. And I know people make their own oxygen tanks but its so expensive (for me anyway). Luckily for me, the D3 regimen works pretty well for me along with some jumping jacks if one really comes strong.