Hi, I am a New Member, from Great Neck NY. I had cluster headaches for 7 years. I feel like that is a biblical milestone. I am so glad to come across this site, and for the first time, the water method. I am trying it for 2 days and it seems to be working, but my head is tingling all the time, and I wonder if I am getting drunk from water. Is that actually possible? I mixed some Emergen-C into the water for electrolytes. Thanks for your help and support! Sorry if I missed some protocols. :)

Welcome to the CH.com, 29 yrs with CH here. I learned to fight it best from this site. Learning about CH ourselves is in our best interest, most Doctors/Neuro's know little about the newest treatments.

I've used the water treatment with limited sucess, it did help but not enough. What meds or other treatments have you used? You'll find many here. Look into vitamin D3, this is having great results including myself. Oxygen is my best friend.

Don

What Don said...and welcome aboard Jordan....

Some folks have indeed found water therapy to be useful....although it never worked for me.
I would be cautious beyond electrolytes as too much water will wash out your water
soluble vitamins like the B's (and especially B12 which you REALLY need as most folks are
deficient), C, Folic, et al......I'd take a full range supplement twere I you....

O2 is also MY friend.....

And most definitely try the Vitamin D3 regimen...found here:


New CH.com Forum › Cluster Headache Help and Support › Medications,  Treatments,  Therapies › Anti-Inflammatory Vitamin D3 Regimen and Survey

...for some reason I cannot post the link itself......many...at least %80.... have found relief/benefit
with this mixture

Best

Jon

Similar thoughts to Jon on the water x3. It doesn't get too much attention on here in recent years.

I'd strongly second the suggestion on the vitamin D3 that works so well for many of us.

That is an excellent suggestion! I have tried many things. Amazon.com is a wonderful gift for CH, and I basically went and put everything remotely relevant into my shopping cart late into the night when I couldn't sleep and I am in pain. I happen to have D3 delivered to me, but I never opened the bottle. Taking them right now. What is the recommended dosage for a CH sufferer? I makes a lot of sense for me! I grew up on a sunny island, but now am in NY winters -- and so I never knew such seasonal patterns could exist. Superman meets Krytonite. My CH is worst during the winter when there is least sun.

I don't have a prescription for oxygen, so I was trying kundalini yoga breathing. The youtube video is "Kundalini Yoga for Headaches Part 1 - Treatment with Anne Novak" but I can't post the link. It is interesting that in part 2 she says that dehydration is the main cause of headaches, and then as part of my websurf, I came to this site with the water x 3 method. This is how I got started here. At the same time, I also started Topamax, exercise, trigger point massage, and that meditation video. So far, all seems to be working. I wake up with some minor pain, drink some water, but it never develops to a full headache.

Well that is my most recent answer. Previous to this, I tried some aryuvedic medicine with limited success.

Cheers everyone in the North! Winter Solstice is here, and so we will get more sun soon. I am also taking a lot of vitamin D now, along with Omega 3, Ca and Mg. It is already helping! Who knew that I could just make my body think it was the summer...

I am reducing my dosage to Topamax given that Vitamin D seems to be helping...and then perhaps I can slowly switch to verapamil.

Does anyone have any advice on how to do so? It says that Topamax should be taken twice daily -- but I was wondering if the instructions for migraine sufferers do not apply for CH nighttime sufferers. I could cut the daytime dose, or I could half my dose.

jordan7815 wrote on Dec 21^st, 2016 at 10:59am:

I am reducing my dosage to Topamax given that Vitamin D seems to be helping...and then perhaps I can slowly switch to verapamil. Does anyone have any advice on how to do so? It says that Topamax should be taken twice daily -- but I was wondering if the instructions for migraine sufferers do not apply for CH nighttime sufferers. I could cut the daytime dose, or I could half my dose.

JORDAN! WE aint Docs...ask your neuro...or better yet your friendly neighborhood pharmacist...
I'd steer clear of the warehouse store  version of those tho...in my experience they are so busy that you are simply an annoyance..............

Best

Jon

Typically you come off a medication like that slowly in a similar manner to how you ramped up the medication. But everyone is different and you should work with your doctor who knows your own medical history as to what is the best approach for you.

Thank you for the responses. I really appreciate it.

I am now off Topamax and on Verapamil. A rough start that does not yet show that Verapamil is better for reducing CH attacks. However, Topamax has a lot of side-effects that I am happy to see gone. Finally, while more CH attacks under Verapamil, they have shifted to midnight rather than 5am. I can sleep by the 3rd or 4th shadow, and so I get better rest by getting it over earlier, even if so far more numerous.

It seems impossible for me to find Oxygen. I finally got a prescription but nowhere to fill it. Found one place so far, but they are away for the holidays.

Red Bull cuts my attack duration from 40 min to 20 min, but I have to drink it early and fast. I do it once a day as I want my sleep, right before the first night attack which should be the most painful. I am still doing lots of vitamin water with Vitamin D and related cocktail to aid.

I got an exercise bike and inversion table now. I spend some time on them on the really bad attacks at night. At minimum, it puts my mind/blood on my thighs or clears my sinus.

Just sharing my experience, and as always very grateful for suggestions. Happy New Year!

jordan7815 wrote on Dec 26^th, 2016 at 11:01am:

A rough start that does not yet show that Verapamil is better for reducing CH attacks.

It takes 7-10 days for verapamil to take effect and if you change the dose, a similar time for the new dose to become effective. Whilst most people get relief at 360-480mg/day, some go to around 1000mg/day, but only change your dose working with your doctor.

Thank you for the useful information. 7-10 days!

I am currently on 120MG x 2 pills per day, and follow the doctor's instruction until my next appointment next month. He said I could take it anytime. Is it better if I do 1 per 12 hours, or 2 at bedtime? I am torn between spreading it out, versus taking both close to the Beast arrival at night.

Still waiting for O2. This holiday schedule is making it hard for me to get it filled.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

This shows that on average people taking a verapamil dose get their maximum concentration in their blood about two hours after taking the dose. So taking the dose just over 2 hours or so before the normal CH arrival time may help prevent that CH. However it may just simply result in the CH arriving at a different time.

So I'd experiment by trying what happens if you take the dose with that timing and if it moves, potentially split the dose to match the timing.

Hi,

In my experience it took 1060 mg/dy (divided doses) in high cycle....and 480 mg/dy in low.
Had some success by timing doses to expected hits...didn't move the hits in my case.

240 mg/dy doesn't sound like enough but you will know...hopefully your neuro will be willing to up dosage if necessary. Should have an ECG prior to start and when upping dosage significantly as verapamil can effect heart rhythm (temporary...returns to normal if med stopped)

Keep up with the water and add fiber as verap can stop up the gastro works if not mediated..

Best

Jon

PS...you WILL love O2...... 8-)...don't give up on acquiring

Thanks for the tips, jon.

O2 delivery FINALLY coming today! $30/month. Why did they want to charge me $200/month for a concentrator machine previously? Everyone in NY just wants to charge the insurance company more $$$.

Note to self: Keep pushing for the right stuff!
Hope everyone else is having a PF day!

I am happy to report that the combination of everything I did finally gave me a pain free night, after a 10-day CH streak. This is probably the longest since diagnosed 7 years ago. Recently, a good day "New Hope" is followed by an "Empire Strike Backs"....so fingers crossed that this does not happen. Will report back.

Wonderful to see how you're progressing in battling the beast. Long may you stay in control of it.

Mike NZ wrote on Dec 31^st, 2016 at 2:34pm:

Wonderful to see how you're progressing in battling the beast. Long may you stay in control of it.

Thank you, and Happy 2017 everyone. Today is my 3rd pain-free day. My right eye still goes to a kip 3 max, but O2 keeps it away.

I work out on my bike and take those vitamins. I discovered that the dose makes me nauseous unless I get a good size meal before. I drink lots of water mixed with electrolytes.

The "Batch" breathing technique seems to be working out. I got my 12 lmin flow rate, but I suspect that I don't need it that high. I squeeze the bag when I inhale and hold, and exhale out of the mask. The bag is always more than full when I come back around.

Jordan, Hopefully like lots of us here that's on the vitamin D regimen and pain free, you to will be able to wean yourself off Verapamil with your doctors help and stay pain free.

Hoppy

Hoppy wrote on Jan 3^rd, 2017 at 10:18pm:

Jordan, Hopefully like lots of us here that's on the vitamin D regimen and pain free, you to will be able to wean yourself off Verapamil with your doctors help and stay pain free. Hoppy

40 days of CH pain in 2016, but the last 6 days have been pain free. That streak ended this am. Even though it only hit a 5 with everything I threw at it, O2, red bull etc., it is discouraging psychologically...but I am grateful for the good streak and the pain of 5.

The funny thing is that I "know" I am having a second attack right now, but I am completely pain free. It is the slightest tingling sensation, but it is the right interval after the first attack. The O2 is keeping it away.