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 

Will try that out! thaaaaaaank you

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.
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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"
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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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or On-line screen to find a physician.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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.

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.

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.

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!!!

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.

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

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...
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

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

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!!