New here - My Hubby's story

[Angel]

Hi - My hubby has been suffering from CH headaches for 18 years now and has been chronic for the past year. Personally I think he became chronic when his neuro started giving him lithium & Verap crap! He has also been on 85 mg prednisone for 5 months but has been off since May!THANK GOD! That is a nasty drug! He also take 2 nasal zomig a day which helps most of the time!Keeps the headache away for 10 to 12 hours! He tried imitrex but felt sick after and got bad rebound headache after. We have tried multiple time to bust but no success. But then learned that detox was a must so he did and is now off lithium and Verp since last Wednesday. Has been hell for him got kip scale 10 headache 5 times last Saturday so decided to try 1gm of shrooms and has been a bit better since!Got some Magnesiume and ordered RC seeds and should get them soon! Can't wait to try this treatment! We are very hopeful! Still on zomig but today hasn't taken any but is by the O2 tank constantly! Read a lot of post here and I think you are all awesome and very supportive! Thank you I already feel at home here!  It's been a very though year ...hope this will give him relief!

[Psiloscribe]

5 months on 85mgs of Prednisone? Wow, did you have to stock a 2nd refrigerator?

If you tried dosing while on the prednisone, that would have blocked everything for sure. its the same with the triptans like zomig.

I hope we can help.

Welcome aboard,

Bobw

[Angel]

Hi again - If anyone could give any tips on the best way to  use the RC seeds it would be much appreciated ! Since my hubby is chronic would it be better to bust with shrooms ? Only problem with shrooms is that it's hard to find but still has about 1gr left and he will try them Thursday. The seeds should arrive early next week ! I will keep you all posted!

[Angel]

I know Bob it's terrible amount of prednisone! He is struggling as we speak to not take the zomig. But he is plugged to the O2 tank!! Beats the headaches but has to return to the thank every half hour! I guess he won't be getting much rest tonight! How long off the zomig should he be before starting the shrooms or RC seed treatment? It has been almost 24 hours since his last zomig...he is struggling big time right now!

[Bejeeber]

Hi Angel,

I'm no expert at all on busting, so I think it's great that your talking with BobW, who is quite the expert.

I can tell you though that judging by the cases I've followed, and my own experience with RC, if it was me in this situation I'd go straight for the big guns. Mushrooms (if they can be found).

[Texas Cluster]

hello Angel, sorry he suffers like he does, I feel for him but relief is around the corner now that you have the RC's ordered.

I have been chronic for three years and was about to lose all hope and then I found Clusterbusters doing research on the clusters and thank my lucky stars I did..

I have done 4 doses of RC's and I cant tell you the difference it has made for me AND my family..

I started out with 10 and wished I did 30 and that may be where he wants to start.

the day after my first 2 doses were trying for me, I got all emotional and very exhausted but after the first day the 2nd turned better days and after the 3rd and 4th dose..I will never be with out the R.C's in my fridge, now I will always keep them in stock for sure...I feel much better not getting 10 attacks a day I am now sleeping every night with out the beast as an alarm clock...

just make sure you have the o2 on hand when starting it and the non-re-breather is important as well in my opinion cause the mask never really did anything for me I also noticed a big difference when I was taking a big drink of water about every 2 minutes when taking the o2 they seem to go away faster now.

its been about 3 weeks and I am just starting to get shadows and might be doseing for them soon.

but whats important is that the seeds are ordered and I wish him the same results I had only better

    Darrin

Texas Cluster

[Angel]

I'm very worried right now...my hubby went off his lithium & verapamil a week ago so he can try busting but now his headaches are worst then ever!! Today was a terrible day! He is trying to stay away from zomig but if he does he get one headache after another even the O2 wont help today! We know he needs to go off the zomig but he just can't handle right now it's to much! 4 kip 10 headaches today  I'm worried that he wont be successful with the RC seeds if he doesn't go off the Zomig! What are we suppose to do now! Can he go back on verap & lithium to help ease the headache and still be successful with the seeds. Also wondering if he can go to the emergency to have a Occipital nerve block injection....maybe that would help ease the pain while trying to go off the zomig! Help! :'(

[Mad6string]

Can he go back on verap & lithium to help ease the headache and still be successful with the seeds. Also wondering if he can go to the emergency to have a Occipital nerve block injection....maybe that would help ease the pain while trying to go off the zomig! Help! Cry

He needs to detox before trying the seeds or anything else. They were blockers for me.

mad6string

[alleyoop]

Can he go back on verap & lithium to help ease the headache and still be successful with the seeds.

From the LSA FAQ:

Why take these steps? Is it worth the added pain from stopping all medications for 5 days prior to starting this treatment? This may be best answered by your responses to the following questions.

Is the thought of this 5 day period worth it to end the continuing cluster cycle and all the preventives and abortive medications you are presently taking every day?

What toll, monetarily, mentally and physically, are you paying each day the current cycle continues?

Is this 5 day period worth taking if it will stop your cycle?

If you have only a couple weeks expected before your cycle would normally end, you may want to wait and consider this technique as a preventive against your next cycle and not as an abortive for the current cycle.

Do your cycles seem to last longer since you've added some prescription meds? Is the frequency increased even though you may be able to treat some attacks with an abortive?

Other factors to consider:

Yes, some people report increased pain and frequency of their clusters during this detox period. Many other people report a decrease in cluster activity a day or two after stopping their medications. Be sure to taper off any medications that need to be tapered and not suddenly stopped. It is best to discuss this with your doctor. Any time you alter your medication plan, you should discuss it with your doctor.

This detox period may not end up being as bad as you may fear.

One of the most effective abortives for clusters is pure Oxygen.

This is also one abortive you can continue to use without adversely effecting this treatment.

http://www.clusterheadaches.com/cb/yabbfiles/Attachments/FAQ_LSA.htm

bobb

[Bejeeber]

Angel - here's a post from the Theory & Implementation forum/topic: "First Time With RC Seeds" if it's of any help to you:

"CArl wrote on Yesterday at 8:53am:

One must reduce Verapamil gradually, it's not advisable to just stop taking it.

If my memory serves me right.

You remember absolutely right!! there`s a rebound effect on the adrenalin and nor-drenalin. If i remember correctly  I had tojust stop taking it because of heart beat down to 37, and the rebound effect was not that nice. but they thought it was ok, because of not using it because of heart, and my young age. so, i don`t know about you, but i wouldn`t ex rec it, if you can avoid it.

When I dosed the first times, i couldn't`t detox from everything, it was just not possible at the moment.

It still worked, i think it just took me a little longer to get the real results. but it did night and night. that`s my excperience at least.

Wish you good luck

[alleyoop]

When I dosed the first times, i couldn't`t detox from everything, it was just not possible at the moment.

It still worked, i think it just took me a little longer to get the real results. but it did night and night. that`s my excperience at least.

I agree Bejeeber.  I myself, have never been successful at tapering off of the verapamil, and I have tried multiple times.  But I still have had some success (enough to still be here advocating after over 5 years) with busting.  In my mind, it is the best treatment out there to date.

bobb

[Angel]

THANK YOU SO MUCH everyone for all the help and advice! I really appriciate it !! It's been a very thought day for my hubby ! We went from all excited about busting with the seeds to very discouraged about detoxing from the zomig!! He really tried hard not to take his zomig and being constantly glued to the O2 tank for the last 3 days with some success! But today the O2 didn't do much! The zomig has always been such a lifesaver for him that it's very hard for him to go off! After his 4th hit in 6 hours at a kip 10 level he just got discouraged! I don't blame him! Just seeing him when I came home from work discouraged and in TERRIBLE pain was heartbreaking for me and my 6 year old daughter  If it's not better tomorrow I will have to bring him to the er since his Neuro and our family doctor are on vacation till august. Hopefully they can give him a Occipital nerve block injection or something to ease his pain!! Now who knows when he will be able to try the seeds.....trying very hard to stay positive! Thank you again everyone! Feels good to have a place to vent and get some advice from people who go through the same thing! He is exhausted now but a least he is sleeping! Hopefully he will have a good night sleep. I will continue to read all your posts and try to learn more on how to help him!

[Bejeeber]

That's a very tough spot your husband is in right now, and I know we are all feelin' for him.

I wish I could say I've heard of occipital nerve blocks being done at an ER before, but I'm afraid I haven't, and I hate to say it, but I have to wonder if they would offer much besides opiates at an ER that you don't already have on hand (O2 and Zomig).

Hopefully I'm wrong about that and someone can correct me here.

At this point I should probably check to be sure - is your hubby taking the most effective approach with the O2, which would be high liter flow (such as 25 LPM or above) and a non rebreather mask such as the optimask?

[Angel]

Yes he does have a non rebreather mask. He usually is able to abort with 8lpm. Should he start taking 25 lpm? I will let him know! Thank you!

[birdman]

He should be at 15 lpm at a minimum if not 25lpm.

[alleyoop]

He should be at 15 lpm at a minimum if not 25lpm.

Birdman is right.  15 lpm is usually sufficient to abort CH, although of course 25 lpm is better.  What will make the difference between the two is the holding bag that you use.  The small bag that comes with most masks does not hold nearly enough oxygen.  I use a one gallon freezer bag (attached with rubber bands) and usually have my regulator set at 11 lpm, even though it goes to 15 lpm.

It's only when I can't get to the o2 fast enough that I have to go over 11 lpm.

bobb

[Bejeeber]

Since the O2 didn't do too much today I would say absolutely he should crank that LPM up considerably - maybe starting with 15 LPM and if that's not working keep going up from there.

Problem is though that it's mostly just special (online) order regulators that will go up that high. I've heard that dive shops - if you have any in your area - can be a local place to get a hi flow regulator (a different "demand valve" type).

Something to keep in mind is that the O2 will also run out a lot quicker at a higher LPM, but hopefully offsetting that will be his ability to abort attacks quicker. Some of the most knowledgeable and experienced O2 aficionados report routinely being able to abort a hit (at a high LPM) within 5 minutes.

The high LPM could really make a big difference - anything below 25 LPM doesn't do jack for me when I'm being hit hard with the CH attacks, and I, as many others do, hyperventilate it at the onset of a hit. Also, many report that the taurine and caffiene combo in an energy drink such as Red Bull can help the O2 stay effective longer, if the drink is downed quickly right at the onset.

The folks over at the clusterheadaches.com message board tend to be the gurus about O2 - I'm always telling people over there to also check out this forum, and if you haven't signed up there, it could be worth your while for continuing O2 advice.

Here's a good read on the O2 subject from that site:

http://www.clusterheadaches.com/O2/index.html

[edit]: Like Alleyoop, I have also rigged up a big reservoir bag to my mask, in my case a big plastic trash bag. Not very glamorous looking  but it works.

[alleyoop]

The high LPM could really make a big difference - anything below 25 LPM doesn't do jack for me when I'm being hit hard with the CH attacks, and I, as many others do, hyperventilate it at the onset of a hit.

Of course 25 lpm is better than 15 lpm, but unless you are late getting to the o2, I believe that 15 lpm is sufficient as long as you have a large enough holding bag.  The ones that are provided with most masks are woefully insufficient.  I use a gallon freezer bag attached with rubber bands and rarely have to go over 11 lpm.

bobb

[Texas Cluster]

someone correct me if I am wrong, but I remember learning that zomig was okay to use, its the verapamil he should detox from..

the verapamil made my clusters worse in numbers and in severity..I had to detox from it just cause of that,and the ergotomine but then Dr's put me on Lyrica after that while I was here learning about busting and I detoxed that fast...don't think I even took it but 10 to 15 days..then went straight to busting and PF now for the most part..shadows are showing now..

but if I remember correctly zomig was alright,  the nasal 5mg one shot nasal spray..if we learn its alright Angel go get that coupon I posted in General category here..

I keep them on hand in case I cant get to the o2

    Darrin

Texas Cluster

[Guest]

Hello Angel,

Give your husband my regards, & a big hug to both yourself, & your daughter.

To begin the busting treatment, & turn your back on the conventional Meds is one of the hardest decisions your husband is going to have to take.

For many CH sufferers, who have had years on high dose Verap/Imigran/etc. IMHO we are no more than street junkies, created by a medical profession who have only second hand meds to offer in industrial strength quantities.

The pain your husband is now facing, is not only a build up of too much medication, but also a withdrawal from years of dependency on pain killers. Non of which were ever intended for treating CH.

We will do anything to stop the pain, which is why we will take handfuls of pain killers, given to us by our doctors. I often wonder how bad many of us would really be, if we had said "NO" to more pain killers.

IMHO, the cleaner your husband can be before busting.

Then the more of a chance he stands of the treatment being successful.

Shrooms will increase the odds of success for him, if you have access to them, & again IMHO, I would take 3grms dried, & hit it hard. Wait 5 days at least, & repeat the process again, & again if needs be.

I know how difficult this must seem, because I have done it.

I was in the same position your husband was in many years ago. I am now pretty much PF for most of the year, & I am no longer addicted to pain killers.

Pisses me right off, that in today's modern medicine.

Doctors can use maggots, & leaches, but are not allowed to put a family back together with a handful of mushrooms.

I wish you all the luck in the world Angel.

CArlxx   

[yury66]

Well sayd!! I'm going through a de tox process after being turned into a cronical suffere from doctors giving me mega doses of verapamil and imitrex now i'm down to 150 mg a day of verap and i won't touch imitrex doing my best with oxy 12lt x min at night during my usual REM crisis I  am trying to figure out how to cultivate shrooms at home I hope to succeeed couse i want NO MORE MEDS!! and i want my life back..thank's to this group I'm trying to get things together

[Guest]

I'm going through a de tox process I  am trying to figure out how to cultivate shrooms at home 

Hello Yury,

I'm sure you will begin to feel much better, once your system has detoxed. You may even feel an improvement in how your CH attacks you.

In the meantime, whilst you are waiting for your shroom crop. Why not have some RC seeds at the ready. It will do no harm to dose with RC's.

Good luck.

CArl...

[tingeling]

Hi

Welcome to the both of you

How are the family doing?

Have you ordered the seeds?

I think there`s a big difference between 15 and 25 flow. 15 works sometimes, but it takes much more time. at once he feel anything coming, little tingling feeling f ex, he then runs to the o2? The faster he get`s to it, the better.

If you feel as a family, he can`t manage to detox.... Sometimes if very exchausted and fatigue, it seems unbearable if pain rambles up even more.

I didn`t detox the first time. And it didn`t work the way it sshould, but it worked enough for me to detox.

It is best to detox of course, and if there`s any meds that you can not combine, he has to. But i just want to mention it, if he feels it gets to much at the time.

Wishing you all the best :)

[Mad6string]

but if I remember correctly zomig was alright,

Any triptan is a blocker.

Mad6string

[Angel]

Hi Tingeling ! Thank you that is very good to know! My hubby wasn't successful at detoxing last week, well everything except the Zomig. Which usually gives him many hours of relief! He tried very hard last week but got hits after hits of kip 10 Ha's! He got very discouraged and I was terribly worried so decided to bring him to the er and they gave him some 70mg of prednisone for 1 week which gave him a bit of relief.

We will try again in the next few weeks to detox. We will get our shrooms this Sunday and the seeds this week! And he will start dosing even tho he is still on the zomig maybe like you said it won't to the full effect but maybe help him just enough to detox from the zomig!

I'm very positive that this treatment will work ! We just need to be patient and stay positive! Thank you all so much for the great advice and being there for us It means A LOT! It's been a rough week for all of us but we will get through this!  I will keep you all posted once we start the detox process soon. Watch out BEAST were coming after you >