New to the group and suffering

[Willy 4]

Hello all, I am 27 years of Age and was diagnosed as a sophomore in High School.  Traditionally,  occipital nerve blocks have worked for me in the past.  I used to live in Upstate NY, where my headaches were cyclical with the seasons.  I recently moved to Florida, and had almost 2 WHOLE YEARS of relief.  I began showing symptoms of shadow headaches about 2 months ago, and a month ago fell into what I have known as a traditional cluster.  I don't have insurance, and have received 2 nerve blocks in the past 2 weeks, 1 being 3 days ago.  I have had 9 headaches since the latter. I use O2 at home.   I also have sumatriptin pills 100mg.  Those seem to help.   Any suggestions on what could get me out of this cluster?  And does anyone know of a good Neurologist in the Tampa Bay area.  

Thank you

[Dallas Denny 505]

Welcome to the community Willy!!  Sorry you had the need to join us!

Good to see that you have O2!!

I'd suggest that you clue your doc in on the sumatriptin (imitrex).......for the vast majority of clusterheads the pills just don't work fast enough.....the imitrex nasal sprays work a bit better, but if you have to resort to the use of trex, the best option by far is injections.

The best thing you can do in my opinion is read up on the anti inflammatory vitamin D3 regimen in our files section......you can start on it immediately once you have acquired all of the co factors but you will need to have some bloodwork done to establish your baseline levels.......we've watched this regimen work in folks life with ch for closing in on 10 years.....works well for about 75 to 80% of folks to either reduce the frequency and intensity of their hits or become painfree!!  The originator of the regimen, Batch, is active on the forum so ask any questions you might have and someone will have an answer!

The last option is busting and you'll also find extensive info on that in the clusterbusters files or the share your busting stories section of the forum.

Dallas Denny 

[Brain on fire 417]

Hi Willy, not much to add... This group changed my life. Welcome aboard.

[xBoss 57]

Welcome to the forum. You can fix your problems here or at least help a lot! For me it was as simple as busting.

[Dan32 1]

@Willy I'm very new here as well so would be inclined to put other people's advice ahead of my own but wanted to chime in.

I also have had nerve blocks in the past, but I also found a medication called Verapamil was really effective. It's a blood pressure med with very little side effects (constipation, can lower heart rate at high doses) and I was taking 2 x 240mg/day when I'm in my cluster period. Would still get some shadows but it has been the biggest help to me, you just need a prescription for it. Most people recommend getting the standard release, not the slow release, and I would take it for a few weeks until I felt like I'm free of cluster. It wasnt something that would abort a headache in progress, but after a few days taking it was like the inflammation got under control.

As I understand it though it's not effective for all CH sufferers but the fact you'd previously had success with the nerve blocks rang true for me so wanted to throw it out there. I'm ordering what I need for Batch's D3 vitamin regimen now so I can have 2 x lines of defence.

[Freud 284]

I’m out of likes for the day =-( but @Dan32 brought up a very good point. There are mixed feelings here about verapamil. Most of the regular contributors here have tried it at some point. I was on 800mg a day until I stopped it months ago. It is important to get an EKG every time they raise your dose as well as check your blood pressure. I tolerated up to 800mg any more gave me blurry vision. I was about to wean it off when my Ch started to get worse I decided not to change anything. But i was fairly sure it wasn’t doing me any good. I now get hit all day and every hour I’m sleeping. But I did get a side effect called calcium channel blocker released peripheral edema. Additionally bc I was in such an “over dose” my cardiologists words ( my neuro insisted on a cardiology follow up after raising each dose when I got above 300+mg a day) I got anasarca it total body swelling. I knew my stomach was getting bigger but I thought the wet gain was from another drug. One day I looked down at my belly. Hopped on a scale and I gained over 15lb in a few months. Next day my legs blew up like balloons.  Called my cardio we rapidly weaned the verapamil half way, then titrated it off over the next couple of weeks. Edema left w a little help of Lasix and I was back to normal in no time. But there are many folks it works miracles for. Like batches D protocol mentioned above. Everyone is different and our CHs change all the time. A little experimentation is in order. I should also warn you verapamil has been a potent blocker for some folks that try to bust. So if you want to try busting. Many of our first line treatments. Don’t start the verapamil yet. Don’t be afraid to discuss all these options give your doc this website and encourage them to take a good look. There is a busting/ mm study that just finished up at Yale. And a study in Switzerland enrolling patients for an LSD study. Busting is a safe (for most read precautions) and effective way to either prevent s cycle or abort one. Hit the blue button at the top of the screen...

[Willy 4]

Update: @Batch @Dallas Denny @Brain on fire @Dan32 @xBoss @Freud

Thank you all to reaching out to me, It means a lot.  I followed the Anti-Inflammatory Vitamin D3 regimen and just completed the loading period. It has been very successful for me so far. I hope you are all doing well.  

[spiny 499]

That is great Willy!  Success is awesome when kicking CH to the curb. Nothing like getting your life back. 

[CHfather 880]

Some of this might be helpful.  It includes basic info about busting as well as other treatments. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

[Brain on fire 417]

Awesome news Willy! Thanks so much for letting us know.

[Dan32 1]

Great news Willy, glad to hear!

[Into Light 55]

Hi Willy

i haven’t tried him, since mine works with me...but

there is a CB approved neuro in Venice FL.

fui

[ChrisK 3]

On ‎9‎/‎8‎/‎2019 at 5:09 PM, Dan32 said:

@Willy I'm very new here as well so would be inclined to put other people's advice ahead of my own but wanted to chime in.

I also have had nerve blocks in the past, but I also found a medication called Verapamil was really effective. It's a blood pressure med with very little side effects (constipation, can lower heart rate at high doses) and I was taking 2 x 240mg/day when I'm in my cluster period. Would still get some shadows but it has been the biggest help to me, you just need a prescription for it. Most people recommend getting the standard release, not the slow release, and I would take it for a few weeks until I felt like I'm free of cluster. It wasnt something that would abort a headache in progress, but after a few days taking it was like the inflammation got under control.

As I understand it though it's not effective for all CH sufferers but the fact you'd previously had success with the nerve blocks rang true for me so wanted to throw it out there. I'm ordering what I need for Batch's D3 vitamin regimen now so I can have 2 x lines of defence.

Dan,  My cardio guy has me on 240mg once a day for my blood pressure,  when I'm in a cycle,  it goes to 240 twice a day.  It usually works well for me.   I am also on the D3 regimen. I was diagnosed when I was in my late twenties as well.  I just turned 60 and the frequency has dropped a lot in the last couple of years.  The support I get from this website is great just by reading posts.  The D3 is the best recipe.  Good luck!