Hi! First time I am posting on this website :)
Well, I will introduce myself, I am Tiffany, 31 years old and have been suffering from cluster headaches since I was 25 but no doctor diagnosed it as a cluster headache until two years ago. When I was 25 they were terrible but not as bad as they have been the last 5 years. 2 years ago they got to the point where I literally would wake up from my sleep, walk around, go outside, lean against the wall that was cold so I could focus on that and not the pain...this would go on for weeks. My boyfriend at the time, could not understand why I was freaking out so much about those INFERNAL aches, and was frustrated also because I would not get a good night sleep for months, and maybe I would sleep 2-3 hours a night until I would wake up from the pain and the I would be completely OUT OF IT! I went to sooooooooo many neurologists and they all told me to take migraine medication etc...of course it did not help, because it wasn't a migraine... I finally decided to look on the internet, and researched my symptoms and finally figured out what was wrong. After so many MRI'S, no usefull meds  I practically auto diagnosed myself jaja and went to a neurologist and told him that I had cluster Headaches...this was two years ago, and he prescribed Amytripline. It was amazing, from one night to the next I was pain free...miraaaacle!!!! ....Was on Amytriptiline for 2 years, until about 1 month ago it all started again. I went to the same doctor, he upped the dose, did not help. He prescribed Paxil, I took it for one day and OOOOOOOOOOOOH NOO, it was terrrrrrrrrrrrrrrrible, a apart from waking up in the middle of the night, I had horrible shakes, really weird thoughts...so I called him and told him that it did not suit me AT ALL...I then decided to go to another Doctor, he prescribe Topamax, and the same thing happened, it went terrible wrong with me, took it for 3 days, still had horrible attacks druing the night, and once I would wake up I could not go to sleep again, so I stopped taking it...(I usually sleep with a tank of oxygen next to my bed, as soon as I wake up with pain, I take oxygen but it only delays the attack...it will calm it down in 20 minutes, but an hour later it will attack again....) so basically, I have not slept more than 2 hours a night for the past month. I really do not know what else to dooooooooooooo, I am so tired. Tthank GOD I have no kids, and am not married. I can't imagine what it must be like for other people who suffer from this and have to take of a family...
I am just desperate to find something that will make this go away...again  :(

Hi Tiffany,
Check out the vitamin D3 regime on this web site it has a
80% success rate of being pain free. Also pop down to your
local pharmacy and get some Melatonin tabs, you need to
take 10-15mg before going to bed, they have a good record
for getting you through the night without those wake up
calls.

Hoppy.

Will try that out! thaaaaaaank you :D

Hi Tiffany,
On the Melatonin it can take up to two weeks to kick in
so don't give in to soon. Also have a look at, re -D2
Sean 0308 on the main board under "Cluster Headache
Specific". Batch has put the whole vitamin D3 regime
that you need to follow. You will need to have a blood
test after being on it for 1mth to see what your 25 (OH ) D
level is.You need a serum concentration level around 80 ng/ml for the regime to work.

Wishing you good luck, Hoppy.

Please!   It will help us to direct you to good sources of assistance if you will tell us where you live (city & state, if U.S. or country). At the Home page: Help button-->Edit & Profile --> Location.
=========================
While your experience with docs is all too common around here, it's also not wise to attempt self-diagnosis and self-treatment. This is a complex area of medicine and there are a number of disorders, some rather serious, which mimic Cluster. Getting a sound diagnostic work-up is wise.

See:
Link to: cluster-LIKE headache:

IN: "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"
==========
Finding a headache specialist is the soudest route, if at all possible.

LOCATING HEADACHE SPECIALIST

1. 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.

2.  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.

3. 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.

4. 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.

5. 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.

Bob's right. And on that note, who prescribed the O2? What flow rate, and what equipment? Your description sounds like a standard 5-7lpm rebreather mask set up. Not terribly helpful for us. Read the link at left and you can find attacks aborting in under 5 minutes. Also, what about Imitrex shots, Migranal, Zomig, verapamil? Did no one mention any of these? Sounds like you need a really good headache specialist and not a standard neuro. God bless. lance

Tiffany wrote.
Hi! First time I am posting on this website
Well, I will introduce myself, I am Tiffany, 31 years old and have been suffering from cluster headaches since I was 25 but no doctor diagnosed it as a cluster headache until two years ago. When I was 25 they were terrible but not as bad as they have been the last 5 years. 2 years ago they got to the point where I literally would wake up from my sleep, walk around, go outside, lean against the wall that was cold so I could focus on that and not the pain...this would go on for weeks. My boyfriend at the time, could not understand why I was freaking out so much about those INFERNAL aches, and was frustrated also because I would not get a good night sleep for months, and maybe I would sleep 2-3 hours a night until I would wake up from the pain and the I would be completely OUT OF IT! I went to sooooooooo many neurologists and they all told me to take migraine medication etc...of course it did not help, because it wasn't a migraine... I finally decided to look on the internet, and researched my symptoms and finally figured out what was wrong. After so many MRI'S, no usefull meds  I practically auto diagnosed myself jaja and went to a neurologist and told him that I had cluster Headaches...this was two years ago, and he prescribed Amytripline. It was amazing, from one night to the next I was pain free...miraaaacle!!!! ....Was on Amytriptiline for 2 years, until about 1 month ago it all started again. I went to the same doctor, he upped the dose, did not help. He prescribed Paxil, I took it for one day and OOOOOOOOOOOOH NOO, it was terrrrrrrrrrrrrrrrible, a apart from waking up in the middle of the night, I had horrible shakes, really weird thoughts...so I called him and told him that it did not suit me AT ALL...I then decided to go to another Doctor, he prescribe Topamax, and the same thing happened, it went terrible wrong with me, took it for 3 days, still had horrible attacks druing the night, and once I would wake up I could not go to sleep again, so I stopped taking it...(I usually sleep with a tank of oxygen next to my bed, as soon as I wake up with pain, I take oxygen but it only delays the attack...it will calm it down in 20 minutes, but an hour later it will attack again....) so basically, I have not slept more than 2 hours a night for the past month. I really do not know what else to dooooooooooooo, I am so tired. Tthank GOD I have no kids, and am not married. I can't imagine what it must be like for other people who suffer from this and have to take of a family...
I am just desperate to find something that will make this go away...again   

I agree with Bob and Wimsey, but reading that you have
had many MIR's to rule out any other underlying problem
it would be in your best interest to start taking the D3
Regime hopefully to become pain free. Also take the
cluster quiz, the link is on your left of this page.

Hoppy.

Thank you for the information, I guess since I am new to this posting thing I left some things out. I am from La Paz, Bolivia...South America, and it is REALLY hard to find a specialist or even remotely someone who knows about cluster headaches. Yes, I know that one should not auto diagnose one self but after being completely desperate and finding that everything that every neurologist told me, was useless I started looking on my own online. I know there are other headaches that mimic CH, but I am pretty sure I have this. About the oxygen, I prescribed that to myself. My 84 year old grandmother has to use oxygen because of the altitude here ( we are at 3600 meters above sea level) , so she has an extra one, that holds up to mmmm dont really know how many liters, all I know is that I can bump it up to 15 liters a minute, that is it and it has helped, a bit.
It is 8 pm here, I have not slept at all and basically had a nervous breakdown at work today...jaja..its tragic comedy, Last night I went to bed at 1..woke up at 3 a.m, and the whooooole thing started again. I even tried to go out for a jog, thinking it would help..and nothing, it went away at 5...I fell asleep again, woke up at 6....again...the same thing. Anyway this has been like that for a couple of nights, before I would get only one, that would completely drain me, and I would sleep fine after that, now its one after the other and I can already feel it coming and just brace myself for it. Anyway, hauled myself to work, and during lunch...I thought no one was there so I tried taking a nap...BAD IDEA...I ended up crying and rocking myself back and forth at a corner and two co workers where there and I could not even beaaaaar to hear them talk, so after the whole thing went away....I apologixed...they must think I am a nut case jajajaj :P
So, sorry for writing so much, but I guess that I hate whining to my family about this, my friends, my boyfriend, I dont let anyone see me when I am in that condition because I know that they will be worried again and not know how to help me, like two years ago.
About the injections...
We dont have that here, Imitrex, Could not even find Melatonin :/ Will keep looking in drug stores or maybe order online? thanks for reading! and thank you soooooo much for the tips
Will ask my PCP if the do the 25 OH D test, and will try to get the vitamin d3 regime started as soon as possible... I am EXHAUSTED...and even afraid to sleep tonight because I know what awaits :(

Hi,
Try chugging down (very fast) a red bull or something similar at the very first sign of an attack. It's the combination of caffeine and taurine  in a sudden hit that does the trick so any high energy drink with those ingredients will do.
I t doesn't work for every one but many people on these boards swear by it, so it's worth a try. Hell, anything is worth a try.

O2 at 15lpm can be a help, but it is boosted tremendously by a nonrebreather mask. Check out the optimask for sale here. You'll find it is so much better than what you are using. And Imitrex is Sumitriptan. If you look that up you are likely to find whatever it is under the brand name sold in Bolivia. It is unlikely they do not have it. Hang in there and keep fighting. God bless. lance

Thank you for the tips!! as for the Sumatriptan, I have tried it before, but they only sell the pill form here, SUMAX..and it takes way to long to kick in, so by the time it kicks in sometimes the beast is gone. I have tried crushing it, and mixing it with water hoping that my system would abosrb it faster, but no luck with that. My neuro also told me to try, Tramadol? but the same...it takes too long :/ Now he told me to take a pill that contains Codeine and Acetanimophin and Ketorol...did not help. At least last night I slept like an angel after almost two weeks with basically 2 hours of sleep per night...so I have recharged my batteries :) I will try and order the O2 kit online, and Melatonin too. And stock myself up with redbull for tonight.

Thank you!!!

Tramadol, codeine etc etc  WILL NOT work so don't waste your time and money, and build up hope of relief. My neuro told me that even morphine does not work for clusters, as it is a primary headache (where the nerve itself is in pain) and it will not respond to pain killers.  If you can get your doctor to prescribe sumatriptan auto injections you will find they work in 5 - 7 minutes.
Maz.

Thank you Maz, will not even try taking the codeine. But as I mentioned before, they don't have the injectable form of sumatripan here ( Bolivia ) :( so I am just relying on O2, anything cold ( Ice packs...wet towels...), give the Redbull tip, a try... until I find a way of getting the injectable form of Sumatriptan. :)

Hello Tiffany,
Sorry that you are in pain.  You may have asked your doc already about Zomig (zolmitriptan) Nasal Spray but if you have not....It works pretty fast as an abortive for me.  I think you should look into that if possible.  They really help my headaches.  I use Zomig and Oxygen while in cycle.  I am in week 11 right now of a cycle and I have used about all my Zomig that I had stocked up.  It is a life saver.  Pain Free wishes are going your way.

Thank you....and yes, I have asked about Zolmitripan and all other triptans, but they only have the pill form here, no nasal sprays, no inhaling meds, no self injections... just pills. I am trying to see if I can get an Uncle of mine to get a presciption for me from the States, and get it sent down here (Bolivia, South America) but I highly doubt there is a chance of any mailing device sending medications that have prescription, will find out. As for now, the closest thing ( That I read about, and am sure that I can get, is Lidocaine...and use it intranasaly?) sorry if my english is bad a times haha...anyways, I asked my Nuero about this option and he completely refused to even look in to it. Asked another Neuro also, and the same thing.
So...I have to work with what I have.

:) After sleeping like a baby last night (after 2 weeks oh helll) lets see what happens tonight....my best wishes for all of you !!!!!!!!!

For now I just have

Hi Tiffany,
Have you tried Imigran in 50mg/100mg. I used 50mg pills
and took one at the first sign of an attack with a very
strong cup of coffee, they used to knock it on the [smiley=hammer.gif] pretty quick.

Hoppy.

Lidocaine was fairly useless for me. Many of us suffer those nasty night hits you describe. It is a challenge to keep sane umder those conditions. I find even laying down to try and sleep will trigger an attack. Some methods used to battle that are sitting up in a recliner (only minimally reclined), or sitting in a chair with a stack of pillows on the table. You may find melatonin will help, and the mask you are ordering from here may just be a game changer.
Of course a proper diagnosis from a "Headache Specialist" Neurologist is critical... that said, it doesn't seem likely you will find one right away in your location... So print out this PDF to go over with your current Neuro...
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Thank you ttnolan, will do that. And thank you Hoppy :) Will try with Imigran. And will go over the pdf with my neuro. As for now, I am still taking amitriptilina  ( two years ago it worked as a profilactic and they left me on it, upped the dose now but has made no difference. So maybe with the pdf they can help? hope so.
thanks again!!!!!!!!

my best wishes your way :)

Hellouuuu Smiley

Ok, don't know what is happening here, but 5 days ago I started taking magnesium supplement, (500 mg effervescent  and still am on Amitriptiline and this is my second PF day Roll Eyes have slept like a baby for two nights in a row...This last cycle has been going on for 6 weeks,( only one PF night about 2 weeks ago) I don't want to be hopeful and think that it is gone, but maybe the magnesium helped in some way? Or the amytrptilne kicked in? I do not know. As I mentioned before I tried:

Paroxetine (Paxil)
Verapamil
Topamax

My neuro put me on amitryptiline 50 mg , 2 years ago, after going through a 12 week cycle and from one day to the next the CH went away. This cycle, upped the amytriptiline to 100 mg, and no response...then tried adding the topamax, verapamil, paroxetine...but nothing.

I don't know if this is giving me a break? Is it the magensium?... Don't know but I am enjoying and LOVING every single second that I am PF.

Best wishes!!!!!!!!!
Back to top

If it's working, keep it up. As for the sumatriptan, it sounds like you have a cooperative doc, so perhaps he'd write a Rx for an online pharmacy? There are a couple out of Canada that might work. You can search "online pharmacy" and get their address. You do need to fax a copy of your Rx but then your order is sent in the mail. You do have to pay cash though. Sumatriptan in vials, along with insulin syringes and needles, allow you to use a self-selected amount to stop the cluster: 2-6mg instead of the auto select 6mg only. Worth a shot. blessings. lance

Yeah...not working anymore, don't really know . This beast just MORPHS and plays arouuuuund!!! :/  had 6 attacks every night-morning for the last 2 days...am exhausted. Stocked up with Sumax in pill form (smashed it up thinking it might be absorbed faster
) stocked up with red bull...coffee and 02...hopiiing...tonight I can finally sleep!! :)

Am thinking about travelling to the nearest country
(Chile) where I can get Imitrex...and see a specialist there, not really getting help from my Neuro here. Have an appt with another one on tuesday, and then I decide if I travel or not....

PF days and nights for all!! :)