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Very thankful to have found this place (Read 1602 times)

Venus

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Very thankful to have found this place
Jul 4^th, 2013 at 1:10pm

Hello - I am new here (obviously lol). I guess I just wanted to say that I am very thankful to have found somewhere like this. I stumbled upon your site when I came across an article I found while researching different treatment options for my headaches. I don't really know what to say here - I'm not usually a message board kind of person lol. I have been suffering with cluster headaches for about 4 years now, but only this year have I learned what was actually wrong with me. When I first made this deduction I was very excited to be able to actually KNOW what the problem was - until then I could only speculate on different causes... knowing would lead me to abortion options that actually worked, and prevent me from continually trying to treat conditions I didn't have (such as ALL the rounds of antibiotics I took because they thought it was sinusitis). But my excitement was soon stifled by the revelation that there was no cure for this problem and, because of my lack of medical insurance, my treatment options were next to none. This was devastating. I was going on 5 months into my current headache cycle (which I have since gone into remission - thank the universe!) and it was ruining my life. I have a 4 year old son. He would ask me if I was every going to get better Sad

I didn't have an answer for him. Many times I would get in the shower (to try and distract my nerves from the pain) and have to yell for him, crying and screaming, begging him to bring me my pills (caffeine pills - one of the only things that seemed to help shorten the headache, which is a terrible solution because of the side effects and residual headaches caused by the caffeine). The only other thing that seemed to help was vigorous exercise to induce heavy breathing and high heart rate right at the onset of the headache - this would still take about 20 minutes, and if I didn't catch it in time it wouldn't work at all. I had considered suicide - and if it weren't for my son I probably would have. It is heartbreaking to not be able to explain to him why I cry all the time, or why we can't go to the park, or why I am so tired.
I am new to this problem - when the headaches started 4 years ago I had no idea that this was going to be a life long burden. Because I don't have a real doctor, I don't really have anywhere to turn for help. I've been seen in the ER multiple times, in which they would usually insinuate that I am a drug seeker (even after telling them that narcotics aren't going to do my any good) or tell me that they don't know how to help me at all. The stress of everything is very overwhelming. Even in remission I am constantly waiting for the shadows - for an indication that Hell has returned; worrying about the burden it puts on my family; wondering if I'm going to be able to get through another cycle. Without being able to get a proper diagnosis I am at a loss while at my job; left to try and deal with the debilitation because my superiors don't recognize my problem as a medical condition. I feel incredibly stuck in a powerless situation.
I am very thankful to have fallen into this website - I feel like just being able to talk to people that actually UNDERSTAND my problem will be so helpful to me (as opposed to people that think they understand, followed with stories about their migraines and other headaches that don't even compare to the Demon.) To be able to read what other people are doing to try and seek relief, and how they have overcome their small and large struggles with the affliction gives me hope that I can make it through, and that life will prevail even when I wish that it wouldn't.
I apologize for the novel - lol.... I just wanted to express my gratitude for the ability to be able to connect with fellow sufferers

Thank you so much

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Guiseppi

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Re: Very thankful to have found this place
Reply #1 - Jul 4^th, 2013 at 1:35pm

Welcome to the board Venus, we're glad you found us. Everything that follows here comes with a standard warning. I am NOT a doctor, have never even played one on TV, and did NOT stay at a residence Inn last night. I am simply a 35 year plus CH sufferer who has learned how to deal with the beast. Obviously, the ideal situation would be to get in to see a headache specialist neurologist, I get the impression that's not an option. the problem is, getting an accurate CH diagnosis requires a lot of testing to eliminate other potential issues, including potentially fatal problems, although those are obviously quite rare. All the advice I give you is with the caveat, the best advice comes from a highly trained professional neurologist.

I’ve had CH for over 35 years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach. But first and MOST IMPORTANTLY

Follow this link to the medications section of this board and read the post

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

It’s a vitamin/mineral/fish oil supplement, all over the counter stuff. It’s up to an 81% success rate of those who try it and respond to the survey so you’re just shooting yourself in the foot if you don’t give it a shot. I’m 3 years pain free on it after a 35 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH! It's literally pennies a day so with the lack of insurance it's an option you just have to explore.

As of January 20, 2013, the compiled raw data indicates an efficacy of 80%. 240 out of the 300 CH'ers who have started this regimen and stayed on it for a month or more have experienced a significant reduction in the frequency and severity of their CH... 78% of the 300 CH'ers experienced a pain free response and 60% of the 300 have remained essentially pain free. Episodic and chronic CH'ers respond to this regimen at roughly the same rate.

Preliminary survey results indicate most of these CH'ers were pain free before the end of the third week with some responding in a little as 12 to 24 hours. The average time to respond is five days

So all that follows will be worthless I hope……….but still…

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

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

Since you don't have insurance, look into the welding oxygen route. It's just as pure as medical 02, it has to be or the welds will fail and airplanes fall outta the sky! Wink

This link will show you how to get set up with welding oxygen:

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

Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.

For now, get some energy drinks. If caffeine pills work for you wait until you try chugging an energy drink at the beginning of a hit. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com

Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe

"Somebody had to say it" is usually a piss poor excuse to be mean.

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Bob Johnson

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"Only the educated are
free." -Epictetus

Posts: 5965
Kennett Square, PA (USA)
Gender: male

Re: Very thankful to have found this place
Reply #2 - Jul 4^th, 2013 at 6:22pm

Let's start to get organized. First,
Please tell us where you live. Follow the next line to a message which explains why knowing your location and your medical history will help us to help you. Follow this chain: CLUSTER HEADACHE HELP AND SUPPORT › GETTING TO KNOW YA › NEWBIES, HELP US...HELP YOU
======
I understand that you don't have a doctor now and that you have not had a formal diagnosis of Custer Headache. Looks like you made a bes guess call based on your reading.

Problem is two fold: there are a number of disorders which mimic Cluster but which are no headche disorders. Because of the complexity of this area, having a good headahce doc and, therefore, getting a good work-up/diagnosis really is important.

Finding effedtive-and appropriate--treat depends on knowing what is going on. I'd strongly encourage you to not start treating yourself until you know for sure what you are dealing with. Self-treatment can, at the least, delay getting good treatment. At worst, it can mask someting more serious than Cluster.

So,
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

; On-line screen to find a physician.

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

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

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.
====
While you are starting this search, read some background material on Cluster. The more you understand calmer you will feel, having sense of what is going on and coming to know that effective treatment is available.
--

Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

(Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]
===

Three sites which are worth your attention: medical literature, films, plus the expected information
about CH.

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

------

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

Search under "cluster headache"
-------
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

Full of articles, blogs, book: written by one of the best headache docs in the Chicago area.
Worth exploring. The latest book is in e-book edition, $10; comprehensive and worth buying for
a careful read.
======
The issue with work is very real and compounded by the reality that Cluster is little known. You might consider print this letter and giving it to you boss.

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

======
While it will take time to get a good doc, to work out an effective treatment plan, our promise is that we have all survived and we know that effective treament is available. Patience is your best help right now.

Bob Johnson

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Venus

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Asheville, North Carolina
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Re: Very thankful to have found this place
Reply #3 - Jul 24^th, 2013 at 5:57am

I live in North Carolina. As far as my medical history goes as pertaining to this problem - I have had teeth pulled, I have been treated for chronic sinusitis, I have been treated for chronic ear infection (sometimes my right eardrum swells when I have an attack) and I have seen an opthamologist (who removed a very unsightly tumor from my left eye but informed me that my pupil dilation was not a problem being caused by dysfunction in the eye). All while I was still married and had medical insurance. As much as I most certainly agree with you about needing to find a good neurologist - like I said before, professional medical treatment really isn't a viable option for me. I am a single parent, work 2 jobs, and have no medical insurance. I could apply for NC state medicaid, but they will force me to take child support out on the father of my child. That is something that I just can't bring myself to do, not because I don't think he should pay - I deserve the money, but because he can not afford to pay; so if I make him pay child support he can not afford to live, or have anywhere to live, and then my son doesn't get to see his father anymore because he is homeless/has no electricity/has no food... My son getting to see his father is more important to me than getting child support, but unfortunately it is a very stupid clause to be able to qualify for any sort of financial assistance. They do not care if you already have a verbal agreement, or if you agree that child support is unnecessary - it is not an option. I have never felt more stuck in my life. With that being said, I am more than well acquainted with exactly what cluster headaches are and most of the other disorders that mimic/present themselves with similar symptoms. I have spent the last 3 years vigorously researching everything I could possibly think of to figure out what is wrong with me so that I could try and help myself. I also have the advantage of being well studied in various branches of medical science. I mainly study infectious disease and the mechanisms that certain viral and bacterial organisms use in correlation with the bodies own function, but am well coursed on basic nerve function, advance anatomy, and general immune response process. I actually study these things for fun to break up the monotony of quantum physics and chemistry. I have spoken with a neurologist about my problem (I come in contact with them along with various other medical specialists at one of my jobs) but have never officially been seen by one, thus never having a "proper" in my medical records diagnosis. I do understand your concern with self diagnosis and I COMPLETELY agree; if there was any way that I could go and see a doctor that didn't involve hurting my little boy I promise I would. If you know of another option that doesn't involve forcing me to take out child support or paying thousands of dollars that I don't have PLEASE PLEASE let me know. This is RUINING my life. But, as of now, like previously stated I am pretty stuck. They won't even treat me at the emergency room anymore because they think that I am a drug seeker (I can only assume due to my only symptom being "mind crushing headache" that they can't find any cause for, and my battle with adult onset acne [which makes me look like a meth addict] that I would also very much LOVE to see a doctor about) even after blatantly stating that narcotics would not help me.
Thank you for the letter about cluster headaches to help my employers understand what is going on. At one of my jobs they are very understanding, but at the other job no matter how I try to explain it they are still under the impression that I can just suck it up and keep working. It probably won't change anything, but them understanding will make it easier to explain why I have to spend 45 minutes in the cooler banging my head and rocking back and forth without seeming like a crazy person.
Thank you SO much for the advice about the wielding o2 - I am well aware that the most recommended abortive treatment is oxygen, but it is virtually unobtainable without a doctor. I am also going to try the vitamin/mineral/fish oil treatment. I have read about endless possible otc home treatment options (such as chlorophyll) but hardly any have had any real study to back it's claim. I would love to be able to see a doctor and have a long term treatment plan, but for right now I will settle for anything that will help me get through this one headache at a time one day at a time. Until I can solve my insurance problem, that is all I can really do.

« Last Edit: Jul 24^th, 2013 at 6:13am by Venus »

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wimsey1

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Re: Very thankful to have found this place
Reply #4 - Jul 24^th, 2013 at 8:14am

Wow...your story is both complicated and compelling. Out of curiosity, what are you studying? You mention several areas for fun, and it sounds like you are engaged in an academic program for chemistry. Or is that fun too? Has nothing to do with the topic at hand, but working two jobs and raising a family while going to school is exactly what I did. I'm glad for it, but can't imagine doing it again.

As for your CHs...clearly you are going to need prevents and aborts that do not require a Rx. If you research this site long enough, you will find many otc suggestions as replacements for what is normally a Rx. Right now, the most popular and apparently effective is the Vitamin D3 regimen, but there are others. For example, search "kudzu."

For aborts, energy drinks and high flow O2. Again, you can find a way around the need for Rx for the O2 and the drinks are available everywhere. There are other "tricks" used for aborts, which sometimes work for some people. It's mostly trial and error until you find something for you: vigorous exercise, frozen peas on the affected side, head stuck in front of the freezer or a/c, lots and lots of water, intentional hyperventilation etc.

These aren't always the best way to go but can work. Hang in there, good luck, and God bless. lance

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Mike NZ

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Oxygen rocks! D3 too!

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Auckland, New Zealand
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Re: Very thankful to have found this place
Reply #5 - Jul 24^th, 2013 at 5:40pm

Quote:

I actually study these things for fun to break up the monotony of quantum physics and chemistry.

Chemistry being monotonous is easy to understand, but quantum mechanics? That is much more fun by far although for many it is enough to give them a headache.

You really seem to be stuck between a rock and a hard place over the rules around getting assistance. This is one thing that you need to make your own decision, but from what you've said it is very obvious that your love for your son is more important that your CHs. Since we know what CHs are it really shows how important he is to you.

Do try the vitamin D3 approach. It has worked very well for a lot of us, so hoping it can work for you too.

For oxygen, many people who have been unable to get medical oxygen have resorted to obtaining welding oxygen instead, just not telling anyone that they will be breathing it. Instead they come out with reasons like oxygenating a fish tank and similar.

As Lance said, check out things like energy drinks which can for many reduce the intensity and duration of a CH.

Keep reading and asking questions, you'll learn a lot.

« Last Edit: Jul 24^th, 2013 at 10:23pm by Mike NZ »

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Venus

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Asheville, North Carolina
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Re: Very thankful to have found this place
Reply #6 - Jul 24^th, 2013 at 8:57pm

To answer everyone's questions - my primary interest is in Physics - quantum physics, astrophysics... ect. But unfortunately that is not a very good career choice, so I major in chemistry and minor in physics. I study medical science because it interests me. Quantum mechanics is VERY exciting and intriguing - physics in general is probably my favorite thing in the universe (because it dictates the being of our universe... you see what I did there? lol). But it can make for some pretty dry reading and sometimes I need some good ol' fashion medical horror (infectious disease) to liven in up a little bit sometimes lol.
I very much don't want CH to ruin my life (like they have been) but my son loves his father, and if he couldn't see him because of me it would break my heart - and I can't live with that. I would rather my own life be ruined than to ruin the life of a innocent little boy who deserves better than that.
While I was researching CH I read a very short (one or two sentences) passage that said there might be a link between D3 and CH - but it was not very informative and mentioned it more as a long shot theory instead of actual information. I find this VERY interesting - when I was pregnant I had a horrid D3 deficiency. They told me that if I didn't start taking tones of it, my baby was going to be born with rickets. I have a slight allergy to sunlight (it causes me to get physically sick), and my deficiency was so bad that it completely ruined all of my teeth (because the body can not absorb calcium without vitamin D). It never occurred to me that this was a problem that would follow me out of pregnancy. I spoke to my midwife today (we are fairly close) and told her what was going on and about the D3 - she gave me a good dosage plan for someone my size (I only weigh 100lbs) and I just took my first one with dinner. I am hoping that even if this doesn't cure my problem, it will help allow me longer remission or shorter cycles. Also - I am very fortunate because my brother is an ex military wielder - who now works for a company that fabricates exhaust pipes for various machinery, and has plenty of access to wielding o2 tanks. I never would have thought of it on my own and am SO INCREDIBLY thankful that someone mentioned it here and gave me access to information on how to use it. All of you have been very helpful and it feels nice to be reassured that I am in fact not stuck, I can help myself, and it will get better. Thank you so much

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Mike NZ

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Oxygen rocks! D3 too!

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Auckland, New Zealand
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Re: Very thankful to have found this place
Reply #7 - Jul 24^th, 2013 at 11:59pm

I've met some extremely good chemistry professors with amazing skills at solving Schroedingers equation for complex organic molecules (often seeming to be more skilled at this than the physics ones). It is a fascinating area, especially when you get to understand the equations behind it. Truely mind bending stuff when you first start to get to grips with it though.,

For the D3 approach you've figured out with your nurse, do give the details as it is likely that it may be lower than what is required. Batch is the expert in this area, so if he doesn't respond here I'd send him a PM.

It looks like you're also picking up other useful info. I hope this helps to make a difference.

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