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Cluster Headaches

Posted by @clusterheadsurvivor in Brain & Nervous System, Oct 16, 2011

Hi, I am a newbie here. a 6 year veteran of Chronic Cluster Headaches. I am waiting to have Deep Brain Stimulation Brain Sugery here in Canada.
Has anyone here had it for the same disease? I am a wealth of knowledge within my disease. Done my research, have several videos on youtube and if anyone needs to talk, I am here.
I am a survivor not a statistic. I am a person in a situation not a victim.

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Posted by @nativefloridian, Oct 16, 2011

I like your attitude. Wow, can you give us the links to the videos please? I do not have this condition but do suffer migraine headaches sometimes. I think they are hereditary because one of my grandmoms used to get them also. One of my sisters gets them frequently, mine are under control and very infrequent.


Posted by @clusterheadsurvivor, Mar 3, 2012 Pre OP DBS Surgery POST OP DBS Brain Surgry

with much respect
God Bless
feel free to email me on youtube. i rarely come on here. I will not advocate any use of ilegal drugs, All comments subject to my approval

Native Floridian likes this

Posted by @nativefloridian, Apr 24, 2012

Thanks for the post, hope all is well and that your recovery is rapid. You are brave to undergo brain surgery. Best wishes!


Posted by @joeratliff, Oct 31, 2012

i am 34 years old i have had clustur headaces scince i was about four i have tried every drug known to man legal and ilegal the thing about ilegal drugs is they only stop the pain for a day or two but have such a back fire on the headaces the pain you feel times the pain by a 100 ilegal drugs brought me 10 times the pain than what i needed to go through i respeact that you dont advocate for ilegal drugs i had to say something if it helps one from takeing the path of self medicating then its been worth it all i can say is trust in god and let the doctors due there jobs


Posted by @jennieb, Nov 4, 2011

Good Luck! Please keep me posted! I have only recently been diagnosed with this agonizingly painful condition just a few weeks ago. The headaches stated September 15th and have not stopped on the left side of my head. Coming and going a few times a day. I have seen a Neuologist and they have done a MRA which was normal THANK GOD for that and the MRI did show changes in white matter conclusive with migraines. I am waiting on blood work still to rule out lyme disease. I like to think of myself as not much of a complainer at all and I have (well had) a high tolerance for pain but wow, this has now brought me down to an all time low!! Any advice you can give me would be grealy appreciated. I have 3 beautiful daughters who are very actvice and for the past month and a half I have not been too much fun for sure!!! I have tried a few pain meds., next they ordered oxygen. I like your attitude!! I am so trying to stay possitive!!! Would love to hear back from you!! Thank you in advance!! 🙂 Best wishes with your procedure!!!


Posted by @lindal, Nov 14, 2011

This sounds very close to the idiopathic brain pain that Mayo diagnosed me in March. I would be very interested in your medical history and how they are going to treat you, I was told they didn't know how to treat mine.


Posted by @batch, Dec 18, 2011

Have you tried oxygen therapy at flow rates that support hyperventilation? It may sound scary and there are a lot of old wives tales that caution you not to breathe oxygen this fast, but it is very safe. I've 3000 hours flying Navy jet fighters and all of that flight time was spent breathing 100% oxygen at flow rates well above 30 liters/minute.

I would try this method of oxygen therapy prior to DBS surgery. In addition, most cluster headache sufferers (CH'ers) are vitamin D3 deficient. Have you had a recent 25-Hydroxyvitamin D lab test? It's also known as 25(OH)D and it's the serum level metabolite of vitamin D3. Most CH'ers presenting with active CH have 25(OH)D levels ? 50 ng/mL, (125 nmoll/L).

Take care, V/R, Batch


Posted by @robertklauscher, Jan 12, 2012

Hi. I suffered from debilitating cluster headaches for about 16 years - and then they just stopped! In retrospect my first one came when I was about 28 years old but I never had another one for about 3 years and then they really started in full force! I suffered from them quite often for 16 years but as of now I haven't had one for 12 years. I will still often get the feeling of a precursor - what I have seen referred to as "shadows" - that seems to predict a headache, but it has been 16 years since I have had anything that I could refer to as pain. (I describe it as the difference between touching the top of your foot with your finger and having a horse stomp on your foot.) I just seem to have "grown out of them". During those years, these were hospital-visit, narcotics-treatment kind of attacks that left me exhausted for days. For no discernible reason they stopped. I just wanted to share this anecdotal evidence with current sufferers to provide that little glimmer of hope that one of these headaches may indeed be your last one! Best of luck!


Posted by @sonofpicard, Jan 28, 2012

I started getting cluster headaches around 2002, i'm 29 now and I hadn't had an episode in about 3 years up until about 4 weeks ago. This is by far the worst series of headaches I've ever had. Like most of you, I like to consider myself pretty tough and not a complainer, I've played sports all my life, I know what it's like to get pretty banged these headaches literally make me want to die to make the pain stop and bring me to tears on a regular basis. It's excruciating to such a level that, well, I don't have the words, it's just ineffable. Usually I just thrash about on my bed or floor holding my head, sobbing/moaning/screaming in pain...until they go away, which lately has been around 1-2 hours.
I'm a student and I don't have health insurance, but I did get some immitrex from a low-income health clinic. This medicine can help but only if i take it as soon as I feel the precursor headache or shadow headaches. Unfortunately, more often than not, I'm asleep when I get the headache and it's full blown when I wake up, at which point the medicine seems to have little to no effect.
I'm writing this rather long response for two reasons, one is that it's simply a bit therapeutic for me, writing out my feelings and frustrations (plus it's nice to know i'm not alone with this agonizing condition). Secondly I'm just wondering if anyone has any home-remedies or techniques they've used to manage the pain. Expensive surgery and MRI's are really out of the question for me, at least for the foreseeable future. Has anyone had any experience w/ foods that caused or helped alleviate the pain? Any kind of movement, exercise, or anything else that they've found helps?
If so, please share. Unfortunately I haven't really found anything myself. This is one of the worst parts about this condition, for me, is the helplessness I feel...
Also, to Batch, I take vitamins daily, the ones I take have 100% vitamin D, I'm assuming this is a good source of D3? You seem to have some knowledge about that so I thought I'd ask.
Anyway, this turned out to be quite the reply, sorry for the length, thanks for listening.


Posted by @chipshot, Mar 16, 2012

I have had Trigeminal Neuralgia since 1968 that has been diagnosed as Tic Douloureux and recently as Cluster Headaches. My upper (scalp) and middle (eye/cheek/nose) on my left side are affected by immobilizing sharp pain.
I had surgery (needle) in 1987 at Barrows Neurological Inst. in Phoenix, AZ. by Dr. Shetter and after it was over he told me that all he could promise me was 5 years relief from the pain. He called it almost to the day. Five years later the pain returned but not quite as severe as it was. Dr. Shetter told me he could not repeat the procedure due to it’s location but he could use nerve blocks.
I’ve had the pain back since 1992 and have been utilizing tricks I’ve learned over all those years to survive, work and raise a family until now.
My personal doctor is an Internist and he has been giving me new drugs to see if they help my pain over many years. None of them have worked until this last one and I have been practically pain free for six weeks now. I am taking Gabapentin 300mg (Neurontin) 1-2 per day and I take Hydrocodon-Acetaminophen 5-500 1-2 per day with them. I know whether to take the second set or not because I can literally feel the pain creeping back in my eye and scalp. Most of the time I can get by on one each per day. The amazing thing about them, which I’ve never experienced with any thing else, is that I can actually feel it taking the pain away.

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