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  1. Like
    sontye reacted to jon019 in 4 years and still going   
    I would just like to add...to the always pertinent, consistent, and delightful support from CHf. O2 should be the first resort provided to ANY clusterhead...from ANY physician....and I don't care what their "training". The literature is OVERWHELMED by the evidence for its efficacy!!! Myself....I would estimate over 5000 hits aborted by OXYGEN (that may be a low estimate). My sanity...maybe my LIFE....owed to a few green headed tanks..... a proper non-rebreather mask...well defined technique....and folks like you will find here and at ch.com.......................................
  2. Like
    sontye reacted to Batch in Just got diagnosed   
    Hey Sontye and Bilal,
    You're vitamin D3 deficient... so it's not what you're doing that's affecting your cluster headache (CH)... It's what you're not doing...  i.e., You're not taking enough vitamin D3 and the vitamin D3 and cofactors and that's what is contributing to the frequency, severity and duration of your CH... 
    See your PCP or neurologist for a lab test of your serum 25(OH)D.  A dime will get you a dollar if your results don't come back under the following normal distribution curve of lab results reported by 257 CHers who took this lab test before starting the anti-inflammatory regimen with at least 10,000 IU/day vitamin D3 plus Omega-3 fish oil and the vitamin D3 cofactors...

    The odds are better than 80% you'll have a favorable response with a reduction in the frequency of your CH from an average of 3 CH/day down to 3 or 4 CH/week in the first 30 days after starting the anti-inflammatory regimen with at least 10,000 IU/day vitamin D3, Omega-3 fish oil and the vitamin D3 cofactors.  Better than 50% of the CHers who start this regimen experience a complete cessation of CH symptoms within the first 30 days after starting this regimen...  You can find a copy of this regimen at the following VitaminDWiki web site at the following link.  Discuss it with your PCP or neurologist when you ask for the lab test of your serum 25(OH)D. 

    The 25(OH)D lab results for CHers experiencing a favorable response to this regimen or a complete cessation of CH symptoms are illustrated in the following normal distribution curve. 

    At 55 cents a day for a very safe, very effective and very healthy alternative to the Rx meds you've been taking to prevent your CH... Why are you waiting?
    Take care and please keep us posted.
    V/R, Batch
  3. Like
    sontye reacted to CHfather in 4 years and still going   
    Very glad to hear of this progress, sontye!  With oxygen, you'll stop attacks in less than 15 minutes, so please don't rely too much on what's working okay now, when you could have something even better.
  4. Like
    sontye got a reaction from spiny in Just got diagnosed   
    Thank you Batch...I have started that regimen it is making a huge difference!!  Posting here so others know it is working!!!   I'm so happy that everyone shared it, it's been amazing I have cut my attacks down from 1-3 hours to less than an hour, they haven't stopped being a daily thing but my hopes and faith are high that it will happen.  I am very greatful for all the input and assistance.  CHfather sent me the link right away and I had a ton of input so to all of you thank you for the support you provide to us it's so nice!
  5. Like
    sontye got a reaction from spiny in 4 years and still going   
    Dallas, Spiny, CHfather:
    Thank you!  I will get the regulator/non-rebreather I'll see what I can get my hands on.  Thank you for the strings and the d3 info buying everything today, I have some of it so will start and also ask my primary to pull my blood to see where I am to start with.
    Again I can't thank you all enough this has been a really good experience for me and I hope it's ok that i may be throwing a few more questions out there as time goes by.
  6. Like
    sontye got a reaction from Bilal in Just got diagnosed   
    I am new here and poking around, I hope it's ok to say something.  I too have noticed if I am on my tablet I will experience a greater "hit" as well.  Just so you know you aren't alone...and I see I am not either so it's helpful for me as well to read your experience.
    I have had mine for 4 years.  When I first got them it was not a pattern right away but it did develop into one and I am nocturnal.  Initially it was during the day for a minute.
    My thoughts go out to you for less pain !!
  7. Like
    sontye reacted to Dylan the potato in Having pain downplayed   
    So im a tad nervous. I've been diagnosed for a little while and i haven't yet actually interacted with anyone else who deals with this before and i thought here would obviously be the best place to get other sufferers perspectives. I'm 20 years old though ive been dealing with it since i was 18. Before my diagnosis i didn't even know what CH is and..right now im still adjusting to all this. I've had a tendency to have trouble interacting with people who don't have CH and actually have become a bit fearful of telling others about it due to some actually getting angry with me when i describe the pain I've been dealing with..like they're appalled with how much im "blowing it out of proportion." I've had a lot of negative responses from people i try to reach out. Most people try to avoid me so they don't have to hear about it and i'm not trying to make them uncomfortable i just want a little support. I hate that everyone sees me as whiny and overdramatic now.   Any way..im sorry for all the off topic rambling about my current state of mind..i kinda was just curious to hear some other people's experiences with having their pain downplayed or how others have responded to what we suffer with here,and just vent here a little bit, and if maybe there's any tips you have on interacting with others that'd really help..im just kinda confused and lost right now
  8. Like
    sontye reacted to Batch in CH lasting longer than 3 hours- Are they Shadows?   
    Hey CoolestNurse,
    Welcome to Clusterbusters...  Having a medical professional in our midst is always a treat... even more so when the medical professional suffers from the same headaches as the rest of us...
    What I would suggest is you need to see your PCP about lab tests of your serum 25(OH)D.  8 years providing information outreach on the benefits of vitamin D3, Omega-3 fish oil and the vitamin D3 cofactors has produced a wealth of data...  For starters, cluster headache sufferers (CHers) and migraineurs presenting with active bouts of headache are almost always vitamin D3 deficient/insufficient... i.e., a serum 25(OH)D less than 30 ng/mL (75 nmol/l).  Moreover, if these headache sufferers take sufficient amounts of vitamin D3, (10,000 IU/day plus all the cofactors, better than 80% of them experience a significant reduction in the frequency of their headaches from an average of 3 CH/day down to an average of 3 CH/week.  54% of them experience a complete cessation of CH symptoms. 
    Migraineurs have a similar response to this regimen except they need a higher maintenance dose of vitamin D3 in a range between 15,000 and 25,000 IU/day.
    Download a copy of the anti-inflammatory regimen CH and MH preventative treatment protocol at the following link and discuss it with your PCP...
    This is not a joke and I don't sell anything.  I've been providing information outreach to migraineurs and CHers on the benefits of this regimen and vitamin D3 since December of 2010.  If you've any doubts about starting this regimen, click on the following VitaminDwiki link.  It will take you to a page at that site that's all about my work with CHers taking this regimen with vitamin D3 and the cofactors.
    If you’re still in doubt about starting this regimen, see your PCP for the 25(OH)D lab test.  The normal reference range for 25(OH)D is 30 to 100 ng/mL.  It's a very safe bet your results will come back less than 30 ng/mL.  As CHers and migraineurs, we need to keep our serum 25(OH)D concentration up between 80 and 120 ng/mL.  I also suggest you read the following posts by other CHers who started this regimen.  I have hundreds more just like them.
    Please feel free to ask questions... Most CHers have them when starting this regimen...  I'm here to help.
    Take care and please keep us posted. 
    V/R, Batch 
  9. Like
    sontye reacted to jon019 in Just got diagnosed   
    Shadows are weird...at one point a shadow...for me...was just the prelim for a hit. But as, spiny says...they don't always presage one. Mostly now, it's what I live with....sometimes all day (can I say a fella can get used to them (considering the alternative) without pissing you good folks off?) Fortunately...you will eventually learn the difference...which I really can't explain.....you just know this aint gonna progress. Odd in other ways, shadows are really hard to "kill" for me....very resistant to O2, energy drinks...and I don't waste a Zomig on one anymore...gotta save them pricey/insurance restricted bullets..........and usually a single point of pain rather than the trigeminal pathway.....
    BTW...guess I haven't been paying attn...don't recall hearing about ginger ...and I eat crystallized ginger and drink ginger beer regularly. Probably cuz I'm just too dumb to recognize "hey that worked!"...............
  10. Like
    sontye reacted to dmlonghorn in Just got diagnosed   
    Interesting, thank you! I have My wife has some "Ginger Beer" in the fridge, know if anyone has tried that? Despite the name, it contains no alcohol.
  11. Like
    sontye reacted to CHfather in Just got diagnosed   
    For shadows, try ginger.  If you can get some raw ginger, slice or grate a bunch if it (maybe a tablespoon if grated; more if chopped) and simmer it for 10 - 20 minutes in a couple of cups of water. It should feel really strong when you drink it.  You can add honey, sugar, etc.  Crystallized ginger and real (strong) ginger candy are also good (for shadows, anyway).  Candy from Ginger People is strong.  Make your own crystallized ginger candy: http://www.foodnetwork.com/recipes/alton-brown/candied-ginger-recipe-1944906  Someone once posted "Ginger and honey on toast. Yum!"
    Energy shots (5-Hour Energy, for example) are also sometimes good for shadows.
  12. Like
    sontye reacted to spiny in Just got diagnosed   
    Hey Bilal!
    I only have one add to put out there. It sounds like you are on Extended Release Verap - taken twice a day. The older short acting variety has been shown to provide better relief. You can tailor the taking to when you normally get 'hit'. You just want to keep them spaced out. Say 4 hours between.
    I used to take mine at noon, 5pm, and 9pm. Most of my hits are nocturnal, so I took most of my preventative later in the day.
    The D3 Regimen is very effective for many and not expensive. Just over the counter vitamins. You would likely see some results in about two weeks. It is really good at reducing the severity of hits and slowing ramp up time. Some patients have gone pain free with just these vitamins.
  13. Like
    sontye reacted to CHfather in Just got diagnosed   
    Naturally, you should have an MRI.  Everyone with CH-like symptoms gets, or should get, an MRI. 
    If you're not going to have an MRI, then you might as well treat it as CH and see what happens.  I didn't want to say this in response to your first post for fear of scaring you, but for many people with CH, the first attacks and cycles can be more mild than what they experience later. So you need to learn about managing it. Sumatriptan tablets almost never help CH, because the attacks ramp up too fast for the tablets to take effect. If your attacks are predictable, you could try taking a tablet or two a couple of hours before you expect it, but you really want to try the nasal spray. 80 mg/day of verapamil is a very, very low dose, also not likely to have much effect. Maybe your doctor is proceeding cautiously, and will steadily increase that dose. It also takes a while for verapamil to get into your system, which is why some doctors give a steroid (prednisone) taper to reduce the pain while the verap has a chance to take effect.  For your next attacks, try some of the things I listed, probably starting with the energy shot.
  14. Like
    sontye reacted to CHfather in Just got diagnosed   
    I'd say that usually the misdiagnosis goes the other way: CH is diagnosed as any of a number of other things (sinus problems, migraine of course, tension headaches, tooth problems).  But a class of headaches called hemicranias is very similar to CH.  You should look that up.  The good thing about hemicranias is that they're preventable with an anti-inflammatory drug called indomethacin; the bad thing is that indomethacin can be very hard on the digestive system.
  15. Like
    sontye reacted to Dallas Denny in 4 years and still going   
    G'mornin Sontye and welcome to the community!!
    Looks like Spiny and Chf have covered all the bases for you but I'll chime in on the weld ox work around......I've been using it for almost 10 years with no I'll effects......you just can't let the welding supply know you intend to breathe it!!
    Dallas Denny 
  16. Like
    sontye reacted to spiny in 4 years and still going   
    Meds: That makes a lot of sense to me. We have members who are on a whole cocktail of drugs and still in pain. Which is ridiculous. But, with the pain being so bad, they continue the drugs.
    And your doctors office is horrible to make you come in monthly to get renewals!!!! You are not taking pain meds after all. What a racket.
    I use the V8 Energy drinks. Love them. I can't take energy drinks or shots - they hit that return to sender button in my tummy and out they go!! And I use caffeine pills too.
    Suggestion - I take caffeine preemptively. I expect a hit at 8pm, so I take caffeine at 6pm-7pm. No 8 o'clock hit. The 10:30pm one will still come, but I do get some sleep that way.  You might try it.
    I am going to push you to get the vitamins for the D3 Regimen. Not expensive and very helpful. I think that you will be pleasantly surprised! It really does make this more bearable even if you don't get pain free from it - slower ramp up and lower intensity hits when they come. Well worth the effort!!!
  17. Like
    sontye got a reaction from CHfather in 4 years and still going   
    CHfather...Thank you for all the assistance, I thank you very much.  This has been really helpful to me and I will see what I can do regarding the o2 I know it is a great tool for me, I just gave up because of the doc and frustration.  I am glad your daughter has a family member like yourself and I know I say it a lot (but I only say what I mean) you are appreciated!
  18. Like
    sontye got a reaction from spiny in 4 years and still going   
    Thank you for responding to me I really appreciate this!!!
    Some background, I was on verapamil time released 250 twice a day it took about 2 days to work, along with the prednisone I think it was 5mgs a few times a day.  I stopped because the cost was crazy and I am a regular jane worker with paycheck to paycheck income so 290 dollars for the verapamil and then the prednisone and the rental of the oxygen and mask and yadda yadda, plus the neurologist monthly to get the scrip at 45 dollars a pop for a "specialist" and always feeling poo pooed when calling the office to try to get it filled without having to go in...nope gotta come in...and the doc is 2 hours away.  I know it almost sounds self destructive to stop but in weighing how well does it work compared to when I do it on my own it really was about the same so medication free (debt free) is working about the same.  So I am all game for other alternatives here.
    I have found drinking red bulls has helped me never really realized the ingredients in there but I think the taurine part is in there.  caffeine is helpful I chug a mountain dew. So I will look into the pills.
    I am hoping this responds to both posts?  I guess I will see.  I will for sure try the v8 energy drink.
    Cold air actually triggers me to have a worse attack...I have tried it...Hot compress on my necks seems to help some, hot shower only if I am not full blown in it.  I will try my hands and feet though.  I have become more aware of when an attack is coming so I do sit up, this does help a lot.
    I try to get up and move but, for some reason my attacks take my legs away...I can not walk well at all I can barely form words and the next day my tongue stays swollen so I actually slur some for a while.  The gland under my tongue gets huge that is one of my "hey it's coming" notifications from my body.  
    I have copied and pasted this on a paper so i can try some of these things, I am in a cycle now so I am excited for something to work additional...I thank you very much for this!!!!!!  Really as I type with tears in my eyes, really thank you!!  I will read up on the D3 and everything you all put here.  I have been following this site for a while, I was afraid to write anything so i am glad I did.  Again Thank you!!!
    My family is awesome, they don't understand but they are awesome, you are right I am very lucky for that.  My husband does the same he walks or carries me to where I need to go brings me the toilet paper to blow my ever running nose and eye and asks if I need anything else, then quietly steps away and keeps others from coming to my "aide" as he knows there is nothing to be done.
    With much appriciation
  19. Like
    sontye reacted to CHfather in 4 years and still going   
    An initial welding oxygen setup will cost you ~$250, depending on what size tank you get and what you are charged for it (prices vary a lot from place to place).  You'll want to buy a mask (<$10 to about $30, depending on whether you get a standard non-breather mask or the mask that's made for CH) and a regulator (~$50), and you need a big adjustable wrench.  You get the tank from any welding supply store (you can find the stores through google).  We can walk you through more specifics (where to get a mask and regulator; what to say and not say when buying the tank). Let us know if you want more info.
    Prednisone for CH is usually prescribed as a taper, where you start with a fairly high dose (could be up to 60mg/day, but probably not that high in your case) and then take lower doses over the course of two or three weeks.  That sounds to me like a lot of $ for verapamil + pred. O2 can add up.  
  20. Like
    sontye reacted to CHfather in 4 years and still going   
    You can find all sides to the question of how pure welding O2 is compared to medical O2, from it's purer to it's the same stuff to it's not as pure.  I only know that maybe 15 - 20 percent of people with CH use welding O2, and of the people we know of directly, none has reported having an issue.  My daughter (the person in my family with CH) has used it for almost ten years now. 
  21. Like
    sontye reacted to spiny in 4 years and still going   
    Welcome sontye! I see that CHF has given you a great start with suggestions. One I will add is that since you are nocturnal, as am I , sleeping in a recliner helps. Just grab some pillows and crank back the recliner till you are comfy. Keep your head above your heart. Will you still get hit? Maybe. Will it be as bad? Not likely - you wake sooner. Others will put pillows on a table and use that method.
    Yes, breathing exercises can also help. Especially if you are caught out in public. The main idea is to get rid of the NO2 in your lungs. So, exhale fully, like a breathing test with a crunch at end it possible. Then inhale deep and hold that for a bit. Up to even 30 seconds. Then big exhale and repeat. Then just breath deep in and out rhythmically for the duration of the pain or until you to to a safe place. Cold air does work best.
    If you go with energy shots, you can always have some in the car. Same with coffee. Works best if taken at the very beginning.
    I strongly suggest that you read up on the D3 Regimen and try it. Just healthy vitamins and it can really make a huge difference. Lower pain level, shorter hits, or complete remission. Not bad at all.
    I am the 'lady' (term used rather loosely) of the house too. My husband was determined to 'help' for the first year. That was rough. He finally understood that he was not able to help in any way except to get out of my way. Don't ask, don't offer, don't do anything that requires a response from me - it all makes the pain worse. Just make sure that there is O2 in my tank!!! I use welding O2 BTW. No, no, no says insurance. So, you go around and get the best abortive available at you local welding supply. Yes, it is safe. 
    Yes, it is worrisome when you feel that you are letting your family down. But you are not! Look at it this way - You are appreciative that they can and do help out. They are glad to have something that they can do to help ease your suffering. It strengthens a lot of families when they work together with this mess. I am so happy to read that they are supportive!!! Some are not. There is no way for them to know our pain and I am glad they do not. Just be my support group. Sounds like a great little group at your house!
  22. Like
    sontye reacted to CHfather in 4 years and still going   
    sontye, I gotta ask a few questions.
    Did you stop taking verapamil because it wasn't helping, or because of side effects? (Because it often doesn't help much until you get to considerably higher levels than most doctors prescribe, but it can help a lot when the levels are right.)
    Are you willing to try the vitamin D3 regimen that has helped very large numbers of people with CH?  Helps prevent cycles, prevent attacks, and make attacks less severe.  https://clusterbusters.org/forums/topic/1308-d3-regimen/
    If you're not willing to fight your insurance for O2 (federally funded insurance, such as Medicare and Medicaid won't fund it), are you able/willing to set up a system based on welding oxygen?  Having O2 is such game-changer.
    Have you ever used injectable or nasal-spray sumatriptan? 
    Have you looked at the materials on busting in the numbered files in the ClusterBuster Files section of this board?  Not for everyone, but often makes a very big difference for shortening cycles?
    Here's some info about a bunch of things people do:
    Caffeine/taurine. For some people, caffeine alone can help to stop an attack or lessen the severity of the attack. Some folks keep strong coffee on hand for that purpose. Some folks use caffeine pills.  Because some ingredient in energy beverages in addition to caffeine is believed to help with attacks (believed to be taurine), many people use those. I recommend energy shots (such as 5-Hour Energy) at first sign of an attack. Shots are quick to drink down and they have more caffeine than energy drinks, such as RedBull, that are much larger. Many people say the shots work best for them when they are as cold as possible. For many people, energy shots/drinks don’t keep them up even if they drink them at night. Some people take taurine pills along with caffeine pills.
    In addition to all the “standard” energy beverages, some people like “V-8+Energy” drinks: https://www.campbells.com/v8/products/  There is a list here of the amount of caffeine in different beverages: https://www.caffeineinformer.com/the-caffeine-database
    “Brain freeze.” You can drink ice water through a straw aimed at the roof of your mouth, with the objective of creating “brain freeze,” or hold something cold, such as frozen juice concentrate, against the roof of your mouth.
    Melatonin at bedtime. Melatonin is depleted in people with CH during their cycles. Some people find that it helps to supplement it. You could start with about 10mg, and go up or down as appropriate. Some people get into the high 20mgs, or even low 30s, before they reach a level that helps. Needless to say, you have to find what works without making you dysfunctionally groggy. Not wise to take both melatonin and Benadryl at night (see Benadryl entry below).
    Feet in very hot bathtub. There’s a theory that this moves blood from your head to other parts of your body. Some people find that putting their hands in very hot water also has an effect on attacks. People have reported that going from feet in a hot bathtub to a cool room and back to the hot bathtub helps the effect. Some people don’t just stand in a very hot bath but will sit or lay in the hot water.
    Ice packs. Help some people.
    Benadryl. Allergy-related conditions seem to flare up CH. Some people take Benadryl, 25 mg every 4 hours and 50 mg at night. As tolerated. Not at night if you are also using melatonin. Probably if you are trying Benadryl, you might skip the melatonin. Other anti-allergy medicines, such as Claritin, seem to help some people.
    Cold air. One study showed that inhaling cold air was nearly as effective as using oxygen. Air conditioning vents in the home or the car are good for this. If it’s cold outside where you are, you could try that.
    Vigorous exercise. Some people find that vigorous exercise (running; doing jumping jacks, etc.) will stop or slow down a CH attack.
    Lime/baking soda. One fellow said that this helped his attacks: the juice of a lime or two along with a teaspoon of baking soda in a cup of filtered (non-tap) water.
  23. Like
    sontye got a reaction from dmlonghorn in 4 years and still going   
    I currently am medication free outside of going to go get botox injections on my own accord.  I tried oxygen and it was not prescribed properly and my insurance also will not cover for me to have it.  I randomly decided to try botox and for what it's worth it does dull the pain down to a 9 from an "oh my god just knock me out" level.  My bouts range from 30 minutes to 3 1/2 hours (or more) the later includes vomiting and wanting to shoot myself (which I wouldn't do but if someone would knock me out I would be grateful at that point). 
    I was on Verapamil (with hesitation from the Doc) and prednisone (which turned my beautiful smile a lovely tinge of yellow).  I was also put on a lot of other things, went through CT's, MRI's, etc. etc. prior to the docs finally figuring out that I had CH.  I like my beer so when I get my bouts I have to say goodbye to that for at least 6 weeks and then I get a break of about 8 weeks and then they are back on again.
    I guess I just wanted to reach out, for the first time, to someone who understands my anxiety, and confusion.  I feel bad for my family members that have to see me endure this.  I am a woman so I always feel like I am a burden when this is happening (okay, I am not boohooing here I'm just old fashioned and I take care of most of the family, chores, etc. with a very big smile because it is what I love to do) and I feel I am supposed to be stronger than this "headache", which kicks my a** literally.  I am exhausted afterwards and can't get up to make dinner or do my normal thing.  I feel like I've been run over by a truck for half the day the next day.
    When I first got these it was from nowhere.  I have had them now a little over 4 years and am somewhat used to them and my pattern.  They have become the norm for everyone around me.  I say "ok bustin' out" and off I go to some spot to endure whatever it decides to provide (my pain level is usually never lower than an 8-9).  I am a very outdoor person and very social so often times I am not in the comfort of my own home.  I choose not to allow CH to stop me except for the minutes/hours it takes to get through one.  I am also a night CH sufferer, usually about 30 minutes after I go to sleep but there are a few day time episodes here and there (scared the crud out of my co-workers one afternoon, that was embarrassing!!!).
    I have become very good at breathing exercises, which help a lot in the beginning until it gets in my teeth then I am a wreck.
    I guess where I am going here is thanks for letting me vent.  Everyone around me is hugely supportive but no one knows what this is and how much it hurts and how anxious it makes you knowing when whatever o'clock rolls around and here we go.  Anyways, I digress...here's wishing you pain free days and less anxious times.