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Greetings all...struggling through another cluster (Read 501 times)
Anthony A
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Greetings all...struggling through another cluster
Mar 6th, 2019 at 12:36pm
 
Hi All,

First post here after lurking for a bit over a year. Iíll start off with a thanks to this community for making me feel somewhat sane once again.

I am 30 years old and to the best of my memory I† have been suffering from cluster headaches since around freshman year of high school. I saw many doctors throughout high school and college and it has not been until my cluster last year that a doctor finally diagnosed me with CH. A big part of this diagnosis was the amazing amount of information on sites like this and others. Back in high school there was very little online to help figure out what was going on. You'd expect doctors to know this insteadÖSad.

CT scans are normal except for a 3 x 3 mm aneurysm arising from the ophthalmic segment of the left ICA. No doc has mentioned a connection between that and CH but i'm seeing a new neurosurgeon next week along with getting a second opinion of my whole diagnosis from Diamond Headache Clinic.

My cluster last year spanned from october to around february. It wasn't until mid jan of that cluster that my doctor started me on 40mg of verapamil 3x a day. This, plus what I assume my cluster ending kept me 99% headache free until this past december when the beast returned in the middle of the night. After a few headaches I knew I was in a cluster and started my bland diet. Relief was minimal. CH pain spiked at around a Kip 9 and have been getting 4-5s since then.

I† went through 2 medrol dospacks that seemed to work but CH returned a day or so once off them. My doctor ramped me up to 180mg ER of verapamil and then to 240mg. 240 seemed to help but I started experience side effects in the form of headaches all day and major fatigue (could not function). Back at 180 the CH kicked in again and he prescribed topamax which I only took 1 pill of because the possible long term vision side effects freaked me out (I already have crappy vision due to kerataconus). Nex, he wanted to try depakote which I do not want to take either because of long term side effects. One positive thing is that I got my doc to prescribe my oxygen and i should have it tomorrow. Yay!

To abort I have been using imitrex pills or relpax† which seem to work if I take it in time. Thankfully the headaches are much more controllable on the higher doses of verapamil. The constant hits/twinges and shadows are so draining though. I try to stay positive but i've basically been a shell of myself for the last 2+ months.

I also started the d3 regimen last weds but things donít seem any different, yet. I have also been taking benadryl morning and nights.

Anyways, that was a lot more than I intended to write. Greetings, All.

Any glaring things that I am missing that I should try?
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« Last Edit: Mar 6th, 2019 at 1:42pm by Anthony A »  
 
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Batch
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Re: Greetings all...struggling through another cluster
Reply #1 - Mar 7th, 2019 at 2:41am
 
Hey Aart,

The neuologists at Diamond are among the best...† That said, they still don't know or understand vitamin D3 therapy as a CH preventative... Download a copy of the anti-inflammatory regimen CH preventative treatment protocol at the following link and take a copy to them.

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Did you start the vitamin D3 regimen with the 12-Day accelerated vitamin D3 loading schedule at 50,000 IU/day for 12 day?

Please let me know and keep us posted.

V/R, Batch
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« Last Edit: Mar 7th, 2019 at 2:51am by Batch »  

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, thatís as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
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Anthony A
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Re: Greetings all...struggling through another cluster
Reply #2 - Mar 7th, 2019 at 3:33pm
 
Hi Batch,

I was following the "two-week vitamin d3 loading schedule" in that document. Which means I was about to start decreasing d3 despite no improvement with CH. Unfortunately, Attacks have increased in the last ~48 hours and seem to be happening at unexpected times.

What do you think I should do?

EDIT: I now see the 12 day schedule on the "Anti-Inflammatory Vitamin D3 Regimen and Survey" post
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« Last Edit: Mar 7th, 2019 at 5:03pm by Anthony A »  
 
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Mike NZ
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Re: Greetings all...struggling through another cluster
Reply #3 - Mar 8th, 2019 at 12:42am
 
Batch is the D3 guru, which has helped so many of us. I'm hoping that you'll soon be benefiting from it.

Quote:
CT scans are normal except for a 3 x 3 mm aneurysm arising from the ophthalmic segment of the left ICA. No doc has mentioned a connection between that and CH but i'm seeing a new neurosurgeon next week along with getting a second opinion of my whole diagnosis from Diamond Headache Clinic.


CH is a primary headache, so an aneurysm can't be causing CH. However it could be causing other issues. With the diagnosis of CH (Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register) being a set of symptoms / frequencies, plus the ruling out of any other possible cause, there is room for the symptoms you get to be due to something else. So working with good, experienced, knowledgeable specialists is essential.

One caveat about seeing any surgeon is that they often like to solve things using surgery.

With verapamil a 240mg / day dose is still fairly low with many needing 360-480mg/day and some as high as 1000mg/day, but of course side effects can interfere as you have experienced.

Great news on the oxygen - read up the best info at - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Imitrex pills work pretty slow for aborting CH. I'd ask about the injections / nasal spray which can work in around 5 minutes. Even when you've got O2, having as second method is great as lugging around O2 isn't always practical or possible (e.g. when flying).

Keep us updated with how you get on and any more questions.
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Batch
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Re: Greetings all...struggling through another cluster
Reply #4 - Mar 8th, 2019 at 12:36pm
 
Hey, Aart,

Sorry the anti-inflammatory regimen hasn't kicked in to provide some relief from your CH.† The best course of action based on feedback from CHers with the same problem is to double the magnesium dose to 800 mg/day split 400 mg in the a.m. with breakfast and 400 mg with the evening meal.† Starting a week to 10 day course of Benadryl (Diphenhydramine HCL) at 25 mg every 4 hours throughout the day is a good way to combat allergic reactions...† These can be subclinical, i.e., no obvious or outward symptoms... but the allergic reaction is still there pumping out histamine.†

Just be careful and not drive as this much diphenhydramine will make you drowsy.† If you need to drive or be sharp as a tack during the day, wait until you're home for the day then take 50 mg as you walk through the door and another 50 mg at bedtime.

The other helpful course of action is to start an Atkins or ketogenic dite and drink at least 2.5 liters of water a day.

Adding at least 300 mg/day CoQ10, 1000 mg/day Turmeric (Curcumin), 4 grams/day vitamin C and a good probiotic have also helped CHers in your shoes.

Remember to see your PCP or neurologist in two weeks for the 25(OH)D lab test.† If your serum 25(OH)D is not up around 80 ng/mL, you'll need a higher maintenance dose of vitamin D3.

Take care and please keep us posted.

V/R, Batch
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« Last Edit: Mar 8th, 2019 at 12:36pm by Batch »  

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, thatís as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
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Anthony A
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Re: Greetings all...struggling through another cluster
Reply #5 - Mar 8th, 2019 at 10:18pm
 
@Mike Nz - thanks for the info! Regarding the aneurysm, thankfully this type has a very low risk of rupturing and even if it did it would bleed into some other vessel. It'll be interesting what a different surgeon and 15 years later makes.  Im surprised my current neurologist has never mentioned nasal spray or injection. That could have helped immensely in the past.

I'm very excited to have finally received the 02 today! They didn't have a rebreather mask so i'm still waiting on that. In the meantime I made the redneck 02 reservoir bag that I read about on here (thanks Batch!) and ordered the 02 kit from this site. Hopefully all this 02 equipment just gathers dust but it's great to know I have multiple options now Smiley.

@batch - I have 500mg magnesium pills. Do you think 2 X 500 is in the safe zone?

I have been taking 50mg benadryl two times a day along with allegra (which I always take) and have recently added zyrtec as well to see if that helps.

Interesting note about the atkins or ketogenic diet. That is basically the opposite of that I am doing. I have been eating a lot of bread, pasta, crackers, and cereal since I felt they were safe and never triggered a headache. Something to think about but don't think i'm ready to go that route just quite yet.

Thanks so much for the help! I will keep you all posted and report back when i get labs done.
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Batch
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Re: Greetings all...struggling through another cluster
Reply #6 - Mar 9th, 2019 at 4:19am
 
Hey Anthony,

Nothing wrong taking 1000 mg/day magnesium as long as you split the dose AM/PM to avoid osmotic diarrhea.

Glad to hear you finally got some O2...  Please keep us posted.

V/R, Batch
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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, thatís as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
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Skyhawk5
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Re: Greetings all...struggling through another cluster
Reply #7 - Mar 10th, 2019 at 11:16pm
 
Hate to tell you this. A rebreather mask is the wrong one. We need a non-rebreather. Huge difference.
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Though I walk through the valley of the shadow of the Beast , I  have O2 so I fear him not.
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Anthony A
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Re: Greetings all...struggling through another cluster
Reply #8 - Mar 15th, 2019 at 1:51pm
 
Skyhawk5 wrote on Mar 10th, 2019 at 11:16pm:
Hate to tell you this. A rebreather mask is the wrong one. We need a non-rebreather. Huge difference.


Whoops, definitely a typo. Good catch.

The O2 seems to work great for me. However, I definitely need to lay off it for a few to really see if the CH is gone. The first few times using it I felt like it wasn't aborting so I took an imitrex out of fear and during that pause the CH went away (obviously not from the imitrex since it happened so fast). Despite feeling like it wasn't aborting those first few times, it undoubtedly controlled the headache from spiraling out of control until I took the breaks and felt almost total relief. Amazing.

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« Last Edit: Mar 15th, 2019 at 1:56pm by Anthony A »  
 
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