Hi, So i am a Chronic CH'r I am currently on Topamax 75mg, Lithium 450mg, Sumavel Dosepro, and generic pill form Sumatriptain, i also have several samples of zomig pill, and Relpax pill, I am getting my Oxygen delivered tomorrow at 5:30pm Hopefully it will work only time Ive ever got to try it was at the hospital and it never really worked but based off what you guys have told me that was because it was probably not at a high enough flow rate. any who, On Thursday the 28th i woke up and i could not see out of my right eye no CH but it went on for about 15 mins. so i remembered reading something on the warning on topamax about glaucoma, So i called my doctor and he said to stop taking the Topamax and go to the ER or see an opthamologist withing 24 hours. so i went to the opthamologist and got cleared no glaucoma everything looked normal she said she had no idea what could have caused it. well on Friday the 29th i spoke to my Neurologist again and he said starting on the first he wanted me to start the Topamax again but only 75mg. since Friday. I have had about 20-25 CH k-8 - k-10 most of them are at least 1 1/2 a couple 15 and a few 3-4 hours well Sunday they where so bad and i didn't want to keep taking the triptains i had to go to the dreaded ER where the nurse kept saying that Clusters where the same as Migraines and she could totally relate because she gets at least 2 migraines every 5 months ! errrrrrrr >:( last night i had six and couldn't sleep at all i am trying to drink as much caffeine ass possible when i start feeling the attack coming but i have never had them this bad and i have had them since i was 11. Any other suggestions is there anything else the doctor could call me any anything i could suggest to him? also i am really considering getting disability i no i am young i work 2 jobs but i miss so much work from these damn things then i get so depressed about it. Has anyone had success in this?

In my humble opinion, you are experiencing rebound headaches from all the triptans you are taking.

If I were you, I'd try my damnedest to stop the triptans as soon as your O2 arrives. Abort each and every attack with O2 through a non-rebreather mask or mouthpiece at a minimum of 25 liters per minute. Hyperventilate with it.

Someone will undoubtedly come along and tell you that I'm full of it, but having experienced the seemingly never-ending downward spiral of triptan rebounds numerous times in my life, my recommendation would be to give it your best shot. The rebounds you will experience are going to last for a few days, and your first inclination will be to reach for the triptans.

My advice: don't do it.

Talk to your doc about possibly upping the dosage of lithium and combining it with verapamil (my magic dosage level was 900mg lithium and 480mg verapamil per day). It's called by many the "chronic cocktail," and aside from the crappy side-effects, it kept my attacks pretty much under control for years.

Thank you! i have not been only took 2 triptain pills in the last week and at the hospital the gave me the migraine cocktail which has no triptains. I cannot take Verapamill because i have low BP. so they have me on the Topamax and i just started the Lithium about a week ago so i am slowly building up. I do agree that it could be rebounds and i cannot wait to try out the oxygen the right way and see if that will help me. i appreciate the advice. thank you so much.

Just my opinion - the triptan pills are worthless for Cluster headaches.  Only the injections work for me - taking 100 mg pills is about as effective as taking Ibu.

If I were you I would make myself a pain in the butt and get as many injections as they will give you.  You will know if they work - because the pain should be gone within 15 minutes if not much faster.  Also - that two shot in 24 hour max is in my mind BS.  If you have the injections and get multiple attacks - take multiple shots.

I would agree with Brew, though, in I would stop taking the triptan pills.  If you have tried the injections before and they did not work - then I would follow Brew's advice.  I would also then try any and every other concoction mentioned on these boards.  KIP 8-9 headaches multiple times a day has to be hell on earth.

Wish you the best - you will find something to help eventually.  If you were close by - I would give you one of my injection kits just to see if they work.  Same goes with the Nasal by the way - the nasal never worked much better than the pill for me.

Good luck

If I read it correctly, you have 4 forms of triptans to abort attacks (but no useful information about how much you are using all of them, in combination, etc.)

Any doc who if feeding so many meds of the same type to you is suspect.

If at all possible, get thee to a specialist!

LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.


2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

6. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
====
If a specialist isn't possible, have a firm heart-to-heart with your present doc about the triptan dosing.

TJMBeav; thanks, yes i have tried the injection i have 3 Sumavel DosePro and 1 Imitrex which do work but i am trying to conserve them because they are so expensive $50 a shot. The nasal leaves a horrible burning sensation in my nose and then makes it feel really dry but does the same as the pill. usually the pills help but i have to catch it when its like a k-5 or below these CH are showing no mercy and are going from k-3 to k-9 in a matter of seconds i really haven't been taking very many triptain pills tho. I kind of wonder if it may also be  the withdraw from the Topamax because i just started retaking it last night. I appreciate you advice and support Thank you guys so much you are all wonderful..

You should not be using more than one of the triptans in a 24-hour period. Using multiple doses of one, or combinations of the various types you have, is excessive and can lead to rebound attacks. (Rebound: attacks caused by the medicine used to abort a headache. Too much of any pain med, even OTC ones, can lead to increase rate of attacks.)

I think this is a meds management issue needing some skilled, professional guidance.

Bob Johnson; I have sample of Zomig and Relpax I have a prescription for Sumatriptain pill form, and prescription for Sumavel Dospro injectable. I try my hardest to not take any medication i try the water, and the caffeine but i am a single mom with a 4 year old and i don't always have someone there to help me with her so I have to take something to abort it so i can function because i throw up, Ive passed out because my blood pressure got so high from the pain. && i normally have low BP. I am going on wed. when i get paid to get the vitamin d3 and try that too. I go to the Neurology & Headache Treatment Center in Alexandria VA and they are great they gave me the samples because i asked for anything they could spare because money is extremely tight for me. And being i had never tried anything other then Maxalt which did not work for me they told me to take those not to mix them within 24 hours and figure out which one works best for me. I have only been going there for about a month and a half now. Thank you tho for all the info. Very much appreciated

Im sad to hear your getting slammed so hard.
a  friend of mine suggested i go to START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Its something that has worked for many Cluster Headache suffers. With the way your getting hammered, and all the RX meds now swimming in your blood, It couldnt hurt to read about it for a few minutes.

Best,
Coach Bill

Thank you will do. !

So i talked to my Neurologist and he is putting me on the prednisone taper thinks that will hopefully help. Oxygen will be delivered today so i will keep you all posted.

I found that tryptans and caffeine only led to rebound headaches for me while I was in cycle. I'm probably a moderate to light case at best, but during the worst of it I was getting 3-4 hits a day. Once I kicked the tryptan pills and caffeine to the curb, the rebounds dropped off and the cycle began to slow down.

Besides the good advice everyone has given you already...I think you are going to find oxygen, when you get it, to be a savior.  If your Dr. specified a regulator that goes to 15  lpm, you should be o.k.  25 to 45 of course would be MUCH better.  I have a 25 lpm regulator and if I get on the 02 at the very first twinge of one coming on..I can abort it in less than 10 mins.

   Let us know how the 02 is wroking when you get it. :)

I'm with Linda, my aborts on 02 run 6-8 minutes. Hope it works as well for you. I drink a Sugar Free Red Bull in between my breaths on the oxygen. It seems to speed the abort, and pushes the come backer attack a little farther down the road. Crossing my fingers for you.

Joe

Thank you guys, I very rarely drink caffeine anymore Because the Topamax makes soda taste like metal. The Doctor has put me on the Prednisone Taper which i know is going to help. He also started me on Indomethacin Because he was just wondering if i may have been misdiagnosed and may possibly have Hemicrania Continua he said he doubts it but it is worth a shot. Normally you can tell within 48 hour if the medicine is helping you because you will be headache free however i am on the Prednisone so i wouldn't know until the prednisone wears off. So i guess we will see. Oxygen is being delivered today they called and rescheduled. i will let you all know when i get the regulator what LPM it is and how it works. Yesterday night i had 6 Headaches. I don't know how i am going to survive this. I am at 75mg Topamax, 500mg Lithium, Prednisone Taper (just started yesterday), and Indomethacin 25mg ( just started yesterday). so lets see what happens.

I'm sorry you're going through that.  The only time I've been that bad is the three weeks I tried lithium.

I suspect the heat wave may have something to do with it, and I agree with everyone else that triptans cause rebounds. Topamax can cause all sorts of "visual effects." What medication did you add most recently?  Or did you start taking all of these at once?

Have you tried all of the easy alternatives  (Water, cold ice packs on your neck or cold shower, D3 in large doses)?

How are you doing emotionally?  At that really bad period of my life, I was suicidal.  Do you have enough support?

Lydia do you see Dr. Stark? I just moved from fort Belvoir. I went to the head ache treatment center in alexandria. I saw Dr. Khosla. He isnt there anymore but i know Dr. Stark is there.  They are pretty good there. I was upset when Dr. khosla left. Dr. khosla sent me to John Hopkins in Baltimore and that helped alot too. Good people there.

I first started with the Topamax and prednisone taper then about a month and a half later i started lithium, I got my oxygen delivered yesterday. I have now started on Indomethacin as well so i'm seriously like a walking zombie with horrible heartburn. lol. Emotionally i'm hanging in there, I have my times when i get depressed and because i'm a single mom and i feel like my CH prevent me from being the mother i want to be and i really don't have very much help. I am staring to have really bad anxiety attacks as well. I do see doctor Stark and he is amazing he called and talked to me for over 45 mins the other day. I am also on the waiting list at Georgetown University Headache Center but its like 6 months. I have tried the ice packs and cold showers i was going to try the D3 but since i'm on the Indomethacin and that's an anti-inflammatory anyway i figure ill hold off.

Once you've decided that you have had it with all the mainstream chemical/pharmaceutical treatments; once you're done with feeling like a zombie; once you realize that to most doctors, every problem is nail so they only give you varying sizes of hammers; once you're done with all of it, maybe you'll read the clusterbusters website and Batch's vitamin D3 regimen with some interest.

The best, most lasting treatments for this horrible condition, and the ones with the least number of side effects, are not the ones your doctor will prescribe. If he did, he would be putting himself out of business.

Some of us have tried to lead you to the water. Now it's up to you to drink.

is it safe to take D3 while on Indomethacin?

Yes.

I will pick some up today.

Have you read through the entire thread?

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

It's more than just picking up some vitamin D3. You have to take fish oil capsules (Omega3 fatty acids), and some minerals with it, lest your body's metabolism of the D3 starts leaching the minerals it requires from your bones. You have to take calcium, magnesium, zinc and vitamin K (some recommend taking additional vitamin A as well).

You also need to get a baseline serum 25(OH)D level so you know where you're starting. You want to end up between 60 and 110 ng/mL and be able to maintain it there. Although I would highly doubt it, you may not even be vitamin D deficient. And don't just take your doctor's word when the test comes back and he tells you you're within the normal range. "Normal" to the medical community is not what a clusterhead is shooting for.

I don't know how to put this gently or diplomatically, so I'll just say it: You have to take control of your own treatment, and stop taking what a doctor tells you as gospel. Being a sufferer of a very rare condition already makes you more of an expert than he is.

I agree with Brew about taking charge of your own treatment.  Definitely look into the side effects of every medication you're taking.  Some things work, but not enough to take them given all the side effects.

If the indo works it should work within a couple of days.  If it works, you have a different kind of headache.  If it doesn't, it will just give you an ulcer.  Stop taking it if it's not working for you in less than a week.


Try and reach out to someone in your life and ask for help. You need it, for mental health alone.

I agree My Neurologist said to give it a couple days after the prednisone taper to see if the indomethacin is helping today is day 3 on Prednisone and Indomethacin (one more does of prednisone) along with the regular Topamax an Lithium and I just had a Headache K-8 for about 1 1/2 Hours. So i really doubt i have Hemicrania Continua. But I honestly am at the point of trying anything to have a life again. ! I will be stopping at the pharmacy on my way home and picking up as many of these vitamins as i can afford =/

You might find D3 in high enough doses difficult to find at a pharmacy.  Try Walmart, Sam's, Costco, or health food stores for 5000IU capsules.

So how did the oxygen work?

I got the Vitamins and i have only had to use the Oxygen once worked okay took around 20mins or so but i caught it when it was only around a k-5. but idk if i will want to wait 20 min possibly longer if i wake up with a k-10... i guess that is when i will go for the Sumavel.

The night time wake ups can be tough. I'd dream I was having an attack, dream I was aborting it with oxygen, dream it wasn't working, by the time I wake up it's really got a good toe hold and is much harder to abort. Took to keeping the E-Tank leaning against the bed all rigged and ready!

Joe

haha.. I was just wondering the other day if other people had "cluster" dreams.  I do!  I am dreaming, but thinking, this is not a real cluster, it's in my dream, it's going away..but then BAM, I have to face that it's reality, come out of the dream and the cluster is going strong.
.
good to hear another experience.

[quote][/quote]
took around 20mins or so but i caught it when it was only around a k-5.


Yes, the night-time hits can be tricky to abort...BUT during your waking hours...do NOT even let it get to a K-5 before you get on it.  You will notice a differance, believe me.

Linda_Howell wrote on Jul 9^th, 2012 at 12:50pm:

do NOT even let it get to a K-5 before you get on it.  You will notice a differance, believe me.

Linda, you can tell before a K-5 that you've got one coming on?  Even my shadows start with a K5.  Sometimes I get irritable or moody and that clues me in, and sometimes a family member will tell me by looking at me before I have a shadow, but generally by the time I know something's coming on it's a 5 or 6.

I use the 02 even for shadows.

Joe

Just wondering?  Has anyone ever got on the 02 for like 10mins before bed? not for a hit or shadow.. Kinda just as a preventive?

Let me know....

Coach Bill

I've done that, it has never prevented a "scheduled" attack that far in advance.  What I HAVE done, is started the o2 a little while before the usual hit.  It still came, but never materialized.

just my experience...
J.

coach_bill wrote on Jul 9^th, 2012 at 9:17pm:

Just wondering?  Has anyone ever got on the 02 for like 10mins before bed? not for a hit or shadow.. Kinda just as a preventive? Let me know.... Coach Bill

Yeah, I tried that a time or three. Didn't work.

Guiseppi wrote on Jul 9^th, 2012 at 9:43am:

The night time wake ups can be tough. I'd dream I was having an attack, dream I was aborting it with oxygen, dream it wasn't working, by the time I wake up it's really got a good toe hold and is much harder to abort. Took to keeping the E-Tank leaning against the bed all rigged and ready! Joe

What Joe said! I usually get hit around 2AM. I abort as soon as I wak up. If I get hit again 45 minutes later, I abort and stay awaked awhile to see if it's over. If the beast comes sniffin' around, I hit it with migranal or trex. blessings. lance

Quote:

Linda, you can tell before a K-5 that you've got one coming on?

Oh heavens yes!!!!  The signs, even at a KIP 1 or 2 are unmistakable.  Like Guiseppi said, the 02 is good for shadows, so even at a KIP 1 or 2, if it turns out to not ramp into an all out head-banger, you are still ahead of the game.

so i do not have Hemicrania Continua, Being i was on the Idomethacin for over a week and in 72 hours had 10 CH all k-8 & k-10 I am taking The D3, Fish Oil & Calcium Citrate I am on Verapamil now, Topamax, Lithum and Melatonin. I was hospitalized on 7/11/2012 because i Kept having the headaches back to back and even with the Zofran, i was throwing up from the pain ( i no not typical with cluster headache's, But its how my body deal with pain. weird i know ) i was so dehydrated the had to give me 3 bags IV fluids and had to poke me 4 times because my veins where so thin and had to use an Infant IV. They are not coming from rebounds i haven't been using the triptains, during all those headaches i only used one and that was the Sumavel. I am at a total loss. I fill like the Verapamil is my last hope.

Lydia, I am more sorry than you can imagine. My CHs have never ceased, but the kind of thing you are experiencing only happened twice in the past 10 years. Since then, I manage. O2 is a huge part of it, but only a part. Know I am praying for you-for relief, for courage, for advice from knowledgable doctors. No one should have to go through this agony. When I get hit today, and I will, probably more than once, I will remember you again and again. God bless. lance

thank you for your kind words, and prayers! I pray for all of you as well, i pray one day they find a cure. None of us should have to live like this.  :'(

Another thing my Neurologist has done is he is now giving me a small amount of dalaudid a month ( i know rebound headaches, addiction, not really gonna touch the pain ) But the Triptains ( all of them ) cause me to panic, get very anxious, and even with Zofran i throw up so bad i dehydrate myself. Not to mention the next day my stomach is totally messed up I still will take them but sometimes i get 4 3hour CH a day K 10 and i cant just take that without seriously considering suicide. Hopefully Verapamil will be my answer and i will not need any of these meds any more.