Leaderboard

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

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!!!

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

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!

Hi, 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 -Sontye

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... http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 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. http://is.gd/clustervitd 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. http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/798/#798 http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1393027277/2/#2 http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/1425/#1425 http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/1465/#1465 http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1324046404/278/#278 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

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!"............... Best Jon

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.

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.

Well he certainly sounds like a great friend to have. Good for you. I've met people who'll outright say its ridiculous when i try to talk about it and make a list of what they've dealt with and others who'll stop and listen to what i have to say. Really even just having an open mind is a great deal of help for any person with any problem. It at least gives them someone to talk about it with

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.

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.

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.